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					          COMMONWEALTH OF AUSTRALIA



   Official Committee Hansard

                SENATE
STANDING COMMITTEE ON COMMUNITY AFFAIRS


       Reference: Patient assisted travel schemes

             FRIDAY, 13 JULY 2007
                         PERTH




                 BY AUTHORITY OF THE SENATE
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                                   SENATE STANDING COMMITTEE ON
                                        COMMUNITY AFFAIRS
                                          Friday, 13 July 2007

Members: Senator Humphries (Chair), Senator Moore (Deputy Chair), Senators Adams, Allison, Boyce,
Carol Brown, Patterson and Polley
Participating members: Senators Barnett, Bartlett, Bernardi, Birmingham, Mark Bishop, Boswell, Bob
Brown, George Campbell, Carr, Chapman, Cormann, Crossin, Eggleston, Chris Evans, Faulkner, Ferguson,
Fielding, Fisher, Forshaw, Heffernan, Hogg, Hurley, Hutchins, Joyce, Kemp, Kirk, Lightfoot, Ludwig, Lundy,
Marshall, McEwen, McGauran, McLucas, Milne, Nash, Nettle, O’Brien, Parry, Payne, Robert Ray, Siewert,
Stephens, Stott Despoja, Watson, Webber, Wong and Wortley
Senators in attendance: Senators Adams, Humphries, Moore, Polley and Webber
Terms of reference for the inquiry:
  To inquire into and report on:
The operation and effectiveness of Patient Assisted Travel Schemes including:

    a. the need for greater national consistency and uniformity of Patient Assisted Travel
       Schemes across jurisdictions, especially the procedures used to determine eligibility for
       travel schemes covering patients, their carers, escorts and families; the level and forms
       of assistance provided; and reciprocal arrangements for inter-state patients and their car-
       ers;
    b. the need for national minimum standards to improve flexibility for rural patient access to
       specialist health services throughout Australia;
    c. the extent to which local and cross-border issues are compromising the effectiveness of
       existing Patient Assisted Travel Schemes in Australia, in terms of patient and health sys-
       tem outcomes;
    d. the current level of utilisation of schemes and identification of mechanisms to ensure
       that schemes are effectively marketed to all eligible patients and monitored to inform
       continuous improvement;
    e. variations in patient outcomes between metropolitan and rural, regional and remote pa-
       tients and the extent to which improved travel and accommodation support would re-
       duce these inequalities;
    f. the benefit to patients in having access to a specialist who has the support of a multidis-
       ciplinary team and the option to seek a second opinion;
    g. the relationship between initiatives in e Health and Patient Assisted Travel Schemes;
    h. the feasibility and desirability of extending patient assisted travel schemes to all treat-
       ments listed on the Medicare Benefits Schedule – Enhanced Primary Care items such as
       allied health and dental treatment and fitting of artificial limbs; and
    i. the role of charity and non-profit organisations in the provision of travel and accommo-
       dation assistance to patients.
                                                                          WITNESSES
ALI, Mrs Norzaini, Private capacity .............................................................................................................. 74
ATKINSON, Mr William Thomas, Chief Executive Officer, Shire of Sandstone...................................... 66
BAILEY, Ms Belinda Ellen Scott, Director, Cancer Services, Cancer Council WA.................................. 22
CHARLIE, Mr Brian, Aboriginal Program Coordinator, Health Consumers Council ............................ 32
COLLET, Mrs Annie, Welfare Officer, Sir Charles Gairdner Hospital .................................................... 48
DEVERALL, Mr Clive, Chair, Cancer Voices WA...................................................................................... 22
EDMONDS, Mrs Julie, National Manager, Transplant Housing and Live Organ Donation,
Kidney Health Australia.................................................................................................................................. 89
ESLICK, Ms Susan, Manager, Health Strategies, WA Country Health Service ......................................... 1
FYNN, Ms Noreen, Chief Executive Officer, Carers WA ............................................................................ 42
HILLENBRAND, Mrs Janice Gail, Welfare Officer, Sir Charles Gairdner Hospital .............................. 48
KOSKY, Ms Michele, Executive Director, Health Consumers Council...................................................... 32
MACE, Ms Jennifer, Acting Head, Social Work Department, Princes Margaret Hospital for
Children ............................................................................................................................................................ 48
MILLS, Mr Kenneth Richard, Acting Area Director, Corporate and Finance, WA Country
Health Service..................................................................................................................................................... 1
NELSON, Dr Carmel, Medical Director, Kimberley Aboriginal Medical Services Council Inc. ............. 82
O’FARRELL, Mrs Christine Helen, Chief Executive Officer, WA Country Health Service ..................... 1
PATTERSON, Mrs Sharon, Senior Welfare Officer, Social Work Department, Princes Margaret
Hospital for Children....................................................................................................................................... 48
PEARSON, Mr Keith, Chief Executive Officer, Shire of Ashburton.......................................................... 66
THOMPSON, Ms Charlene, Private capacity............................................................................................... 74
Friday, 13 July 2007                           Senate                                          CA 1


Committee met at 9.05 am

ESLICK, Ms Susan, Manager, Health Strategies, WA Country Health Service

MILLS, Mr Kenneth Richard, Acting Area Director, Corporate and Finance, WA Country
Health Service

O’FARRELL, Mrs Christine Helen, Chief Executive Officer, WA Country Health Service

   CHAIR (Senator Humphries)—It is my pleasure to declare open this public hearing in Perth
of the Senate Community Affairs Committee. The committee is taking evidence in its inquiry
into the operation and effectiveness of patient assisted travel schemes—PAT schemes.

  I welcome to the committee hearing representatives of the Western Australian government.
Thank you very much for being here. I understand information on parliamentary privilege and
the protection of witnesses has been provided to you. As departmental officers you will not be
asked to give opinions on matters of policy, although this does not preclude questions asking for
explanations of policy or factual questions about when and how policies were adopted. We have
a submission from you, and we want to thank the minister for having made sure the committee
had a submission from the Western Australian government. We have some questions to ask you,
but would you like to begin with an opening statement of some sort?

  Mrs O’Farrell—Thank you very much. We have prepared a short bit of information to
expand on the submission, which we hope is helpful. I am going to ask Sue Eslick to walk
through that quite quickly. We had in mind that it might be more beneficial to leave room for
some questions and answers. We are happy to assist as much as we can.

  CHAIR—That is great; thank you.

   Ms Eslick—I thought I would give you a brief overview of the PAT Scheme in WA, some of
the issues from our perspective and our vision for the future of the scheme. First of all, I will
give a quick introduction to the WA Country Health Service. It is fairly unique. It is a single area
health service for the whole of country WA. We have over 70 hospitals and over 40 nursing posts
in the WA Country Health Service.

  Sustainability of health services is one of the major issues which we are grappling with all the
time. We have a really dispersed population of about half a million people spread across vast
geographic distances. As you would be aware, there are huge workforce shortages and increasing
costs. A lot of our work and reform around country health services is to try and improve that
sustainability of services. One of our key strategies and models for doing that is to try and
develop a regional network model of services. In each of our seven health regions, we have
identified one hospital as the main hub hospital from which we are trying to increase the critical
mass of staff, skills and expertise, to provide a broader range of services in the regional hospital
but also support and coordination to other services in that regional network. That is the model
we are working in. Transport is a key strategy within that. We are trying to build up the capacity
to coordinate patient transport services across the region. Do you want to expand on that,
Christine?


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CA 2                                           Senate                            Friday, 13 July 2007


  Mrs O’Farrell—No, I think not. I just want to add that Sue has had several years now of
involvement in the strategic ongoing development of the PAT Scheme and the reason I have
asked Ken to come along is that he is currently working in our area office but he has worked at a
high level oversighting the administration of the PATS as it operates in various regional settings,
and most recently for several years in the goldfields region.

   Ms Eslick—I will move on to the PAT Scheme. The PATS in WA is for rural residents. I think
it is slightly different to schemes in some of the other states, where the interstate schemes
integrated into the same scheme. We have a separate scheme for interstate travel which is
managed through the Chief Medical Officer’s office.

   The PATS subsidy is aimed at levelling the playing field between country and metropolitan
areas. We recognise that everybody has costs associated with access to medical specialist
services and quite often in the metropolitan area those costs can be quite considerable. People
living in the metropolitan area can have to travel sometimes up to 80 kilometres to get to a
medical specialist, so those people have costs too. What we are trying to do is equalise it by
providing the subsidy.

   Apart from the subsidy, the PAT Scheme also has some associated functions which I think are
quite important for us, particularly for the remote locations, with the logistic management of
patient travel. We offer all patients the assistance with organising their travel, and in the more
remote locations it is actually quite a considerable job—we play a sort of travel agent role, if you
like. I will come back to that in a moment.

  In terms of administration of the scheme we are increasingly moving towards a more
regionalised model. In the past PATS was administered by each of our small local hospitals. As I
say, we have over 70 hospitals, and each hospital administered PATS separately. We are moving
towards a much more regionalised administration of the scheme, partly to improve consistency
of application and improve efficiency but also to build up that regional expertise of travel and
bring together the knowledge of PATS with the knowledge of things like what services local
specialists can provide, what the local transport options might be for a patient and the linkages
with the metropolitan area so that PATS is part of an integrated program of trying to increase
access to specialist services and is not seen as an isolated patient travel subsidy scheme.

   We thought we might provide very briefly a couple of examples of the sorts of PATS claims
which we administer. Most of our PATS applications are fairly simple, such as for one-off trips
for patients who are reasonably self-sufficient and are just claiming a fuel subsidy. They are
quick and easy to administer and the level of the subsidy is usually quite small. Probably the
majority of our trips would fall into that category, but a considerable number of our PATS trips
are fairly complex. Patients with chronic conditions—for instance, cancer patients—often need
to make frequent trips to Perth, have to be here for extended periods of time and need to visit lots
of associated specialists and allied health services.

  Mrs O’Farrell—It is quite a complex scheduling paradigm. It is not a matter of simply
arranging for a travel reimbursement; there is quite a lot of travel agenting, scheduling
appointments and packaging it all together.




                                      COMMUNITY AFFAIRS
Friday, 13 July 2007                           Senate                                           CA 3


   Ms Eslick—For those patients we need to try and make sure that, for example, they do not
have to go back to the GP for a PATS referral every single time they need to come to Perth. But
at the same time we need to make sure that they do not automatically come back to Perth for
treatment or for a follow-up appointment that could be done locally. We need to try and make
sure their appointments are coordinated so that we can minimise the number of times they come
over to Perth.

   Some of the issues for those people that often mean we need to look at exceptional
circumstances are things around escorts: do they need an escort; is it possible to get an escort
who can be with them for an extended period of time; is there suitable accommodation available
in Perth? Quite often people might need to return home during the course of a treatment and that
would be an exceptional claim for PATS. There is some fairly complex decision-making
involved in some of that.

   The other example we wanted to give was, for us, the most complex and it involves patients
coming from a really remote location. For example, for a patient who needs to come to Perth
from somewhere like Balgo, we have very complex logistic arrangements to make which really
do require local knowledge. The trip from Balgo would involve finding somebody who lives in
the community who can drive the patient from Balgo to Halls Creek. The patient would then be
picked up at Halls Creek and often kept at Halls Creek hospital. We have a transit lounge
arrangement there where they are given some food. They can rest there until the Greyhound bus
comes through. I think that bus comes through at 4 o’clock in the morning, so we need to make
sure that the patient gets on the bus. They travel to Broome. Again, somebody needs to meet
them in Broome. They might need to stay at the hospital and be given some food and somewhere
to rest until the aeroplane leaves Broome for Perth. In Perth they are picked up by our meet-and-
assist service and we make sure that they get either to their accommodation or to their
appointments. Then we need to reverse all of that to get them home.

  All of their costs will be paid for directly by the health service. There is also a fair amount of
work to do in preparing the patient for the trip. They are simple things like making sure the
patient has clean clothes and shoes—Qantas will not let patients on the aeroplane without shoes,
so all of our health services have a box full of spare shoes—and making sure they have their
personal requisites, their appointment details, some money and access to their pension if they are
away for a long time. That is the job which PATS clients and the local health service providers
have to do for those patients.

   Mrs O’Farrell—I just might add that there is a lot of work involved at the local level in
packaging up all of that for the person. That is done by people who are at the local level and who
have a good understanding of the local issues and dynamics. For the person to come back, the
work is organised typically by a social worker in a metropolitan hospital who has none of that
knowledge. Our challenge is to put in place an intermediary to try to help those metropolitan
people access and contact the people they need to and to try to make a seamless repatriation
capacity for the patient, because the propensity for these patients to get lost, to be sent the wrong
place, to miss connecting legs or to not be picked up by one of the staging post hospitals or
nursing posts along the way and looked after is pretty high. These are low volumes of patients,
relatively speaking. The higher volumes of users of PAT schemes are generally the people who
live closer to Perth. They are more easily able to navigate the system and access the benefits.



                                      COMMUNITY AFFAIRS
CA 4                                            Senate                             Friday, 13 July 2007


They have their own private travel and they can manage to get into the metropolitan area and
access their appointment quite competently on their own.

   The percentage of these difficult patients is actually quite small, but in fact they take up the
largest amount of time. The biggest resource is the social work and packaging, arranging travel,
scheduling appointments and so on for those people. Of course the costs are high, but they are
the people who are in most need of the escorts. The reason we have put this meet-and-assist
service into our Perth centre is to try to coordinate the arrangements and provide a really
experienced, competent, on-the-job all the time, very responsive, flexible service to try to help
people both at the regional level and also in the metropolitan area make things work for that
particular group of patients.

  Ms Eslick—On the issue of escorts, our experience is that quite often escorts who come down
with a patient are not always the best option for that patient. The escorts themselves are often not
familiar with the city and do not know their way around hospitals, so they are not really able to
help the patient navigate through the hospital system when they are down here. We are told
anecdotally that sometimes they do not stay with the patient and can be hard to find when the
patient is ready to return home. Often, the escorts themselves are in need of support when they
are down here, so it is an additional burden for our health services rather than a support for the
patient. For those reasons, we have established the meet-and-assist service.

   Mrs O’Farrell—We have a lot of people who travel with escorts and, if escorts are needed,
we do not have a problem with escorts going with the patient at all. But, in our experience, it is
sometimes difficult to find escorts who are more competent than the patient and who are not
equally as intimidated by the whole thing as the patient. In some cases they can be of little value
to the patient. So, for those sorts of people, this is the value of the meet-and-assist service. It is
better, in our experience, to be very exquisite about packaging the journey and making sure there
are no breaks and vulnerabilities—that everything is really well lined up and the person is cared
for, met and assisted all the way through—than it is to simply say, ‘An escort will do the job’ and
have two people who get lost and do not make connections. That is our philosophy.

  Ms Eslick—For example, we have arrangements with Qantas where patients who have special
needs will be met by Qantas at the airport, put on the plane early, given special meals and a
special seat, shown how to use the toilet if they have not been on an aeroplane before and given
over to somebody else at the other end.

   I have just listed some of the issues for us in administering PATS; it is not an exhaustive list. I
think you will see from the submissions that quite often we get accused of being inconsistent in
the application of the scheme but, on the other hand, there are accusations of not being flexible
enough. That is quite a hard balancing act for us. Really rigid application of the PATS guidelines
will not take account of individual circumstances for the patient, so we try and administer the
guidelines as well as we can but still with some flexibility for individual circumstances. I think it
is much easier to be flexible when the costs are quite low.

  One of the examples which we often come up against is around escorts. If the patient is
coming from the south-west and they are travelling in their own car, approving an escort for that
patient is actually not going to cost us very much, because the travel subsidy will be the same
and we might just have to pay an extra $35 accommodation subsidy for an escort. So it is very

                                      COMMUNITY AFFAIRS
Friday, 13 July 2007                            Senate                                           CA 5


low-cost for us. So people in the south-west are probably more likely to get approval for an
escort than somebody perhaps from further away, where we are talking about an extra $1,000
airfare.

  Mrs O’Farrell—And there is the potential for a not very competent escort as well.

  Ms Eslick—So the guidelines around escorts, as you are aware, are about if the patient really
needs an escort for their medical condition. So, if they physically need the support of the escort,
we might be a little bit more flexible around the sort of psycho-social support if it is somebody
coming in their own car and it is not costing very much.

   Mrs O’Farrell—We noticed when we read the submissions that there was a lot about
inconsistency and a lot about flexibility. We are flexible. We have a delegated arrangement to
every region to be able to flex around the guidelines for individual circumstances, and they do
because we do not have a generic consumer group here. We have vast differences between
regions and distinctly different groups of patients, so there does need to be a lot of flexibility and
we do accommodate that. Hence, there is a perception of a lack of consistency. But I do not
know how you have both. You cannot have a flexible scheme and then have it be highly
consistent. So we kind of keep consistency at a broad level but have a great deal of case by case
flexibility to try to match up circumstances for individual families or patients. We understand
that the perceptions of those two things are coming through as issues, but that is our point of
view on that.

   Ms Eslick—The second point I want to talk about is the universal scheme versus targeted
assistance. PATS is the universal scheme; it is open to everybody in country WA. Many of the
applicants who access PATS access it perhaps only once a year. They claim a very modest fuel
subsidy, and I suppose for them that fuel subsidy does not make a huge difference to their
financial situation. A one-off specialist appointment is relatively affordable for many people. Our
view is that many people who are most in need of financial assistance to access specialist
treatment are those people who live furthest away. They have the furthest to travel, they are on a
very low income and they make multiple trips because of a chronic condition, and we would like
to be able to provide more support to those people. But the effect of any increase in fuel subsidy
is diluted across all applicants and in fact it just means that the people who are most in need of
assistance end up getting very little extra money.

   Mrs O’Farrell—This is one of the issues we have tried to get around in PATS. In Western
Australia, with its seven regions and a lot of people in regions where we are providing a pretty
basic level of services, especially with specialist services, you can generate a very significantly
greater cost basis into PATS and give individuals a relatively small benefit because of the
dilution effect. So, last time we tinkered with the benefits in the scheme, we tried to make a
deliberate decision to target some additional resources for the people who would benefit from it
the most. A lot of people we spoke to felt that that was quite acceptable and fair, because the
great majority of users of PATS are one-time travellers in a year. Therefore the cost of accessing
health care is not very great in the scheme of things, and a small contribution towards their fuel
costs in a service travel scenario is a reasonable thing to do. So, rather than increase the fuel
subsidy for everybody, we sought to provide more benefits, particularly to the people with
chronic conditions who need to be managed on an ongoing basis in one year. If they need to
travel more than four times, they automatically become eligible for a higher subsidy. I think that

                                      COMMUNITY AFFAIRS
CA 6                                            Senate                             Friday, 13 July 2007


is something that is a good foundation for us to build on. It is certainly seen by people as being a
lot fairer. If we continue along that line we can feel a bit comforted. We can build on the
approach that you can increase the level of benefit and the level of reimbursement for targeted
groups of people and constantly flow greater benefit to the higher users and the people who will
benefit from it the most. It can get away from the dilution effect, which costs everybody a lot
more money but does not give any particular individual a sense of it being of greater benefit to
them, given their particular circumstances and the costs they bear in having to access a quite
expensive health kind of environment.

  On that point, we do not want to get into a really complex process for assessing people’s level
of income either—

  Mrs O’Farrell—Means testing.

   Ms Eslick—but the health concession cards, we do recognise, are a fairly clumsy way of
deciding whether or not people are on a low income. I will very quickly speak about the other
issues. We have a very poor transport infrastructure within rural WA. One example is that the
only commercial operator for the Western Desert folded quite recently. So people living in the
Western Desert now have no means of transport to their regional centre.

   The capacity of our regional centres, unlike the eastern states, is actually very small. All of our
regional centres except Bunbury have a population of less than 50,000. There are few specialist
services and few procedural services, and that is likely to get worse. In terms of PATS, we think
that in the future we will probably need to fly more people to Perth, not fewer, but at the same
time we do not want to threaten the viability of the regional services we have by subsidising
people to fly over them and come to Perth where the service is available locally.

  Our vision for the future: we would really like to streamline the administration of the scheme
and move right away from our current paper based scheme, which we recognise as fairly archaic
with the availability of technology which is around today. In the future we would like to move to
a network scheme which is electronic and perhaps linked to GP patient management systems,
hospital outpatient booking systems and electronic fund transfer payments—a really streamlined
administration that is patient friendly. We also want to integrate patient subsidy scheme PATS
much more closely at that regional level with other strategies for assisting patients to access
specialist treatment. So there would be things like telehealth, visiting specialist services, perhaps
coordinated discharge planning—

  Mrs O’Farrell—Other transport.

  Ms Eslick—Yes, other transport arrangements with Perth—the shared care type arrangements
with Perth services. We also want to improve the logistic management of patient transport—
again, through our regional services and through further developing the meet-and-assist service
Chris spoke about earlier.

  Senator ADAMS—I have a lot of questions. Firstly, while we are on the technology now with
the south-west McKesson scheme, has that been evaluated yet?

  Ms Eslick—Yes.

                                      COMMUNITY AFFAIRS
Friday, 13 July 2007                              Senate                                             CA 7


  Senator ADAMS—What were the results of that?

   Ms Eslick—The results of the evaluation were that both patients and doctors have a high
degree of satisfaction with the scheme. There were some changes from the way it was first
intended to be operated to the way it was finally operated, but a high degree of patient and
doctor satisfaction were the main outcomes of that.

   Mrs O’Farrell—It works very well in an environment where you have a very generic cohort
of patients. They are reasonably close to Perth and most of them travel surface. They are a group
of patients who are generally able to navigate the system and look after themselves competently.
It is a matter of reimbursing for fuel costs, so it is a very streamlined way for them to get access
to their benefit.

  Senator ADAMS—I have had a number of GPs going the other way and saying that, no, they
are not happy and the patients are not happy. Also, there are problems when they insist that they
see Bunbury specialists and when they are not able to get to Perth to see specialists.

   Mrs O’Farrell—The McKesson arrangement does not change the eligibility criteria. PATS is
still administered on the basis of access to the closest specialist. So, if a specialist is close, that is
the one you are expected to go to. If you want to go to another one, PATS will not provide the
assistance. Nothing about McKesson’s contract changes that.

  Senator ADAMS—That is not the evidence—they have been refused a trip to Perth when the
specialists have not been available in Bunbury.

  Mrs O’Farrell—They should not have. If no specialist is available, they are eligible to go to
Perth.

  Senator ADAMS—Unfortunately, that is not happening with that service.

  Mrs O’Farrell—I do not know the magnitude of it not happening.

   Senator ADAMS—You talk in your submission about the nearest appropriate specialist. I
wish that were happening but it is not. As you know, I have been involved in this for probably
the last 12 years, at least, in this state, and things are not changing; more and more people are
being disadvantaged. As to saying that PATS is available to everyone, I have evidence from a
number of GPs that they will not even mention PATS to anyone who does not have a health care
card. That means a lot of rural people, especially at this stage with people who are working and
living in agricultural areas, are not travelling very well; things are not good. They are probably
the people who need access to specialists and they are being denied it.

   Mrs O’Farrell—It is a scheme that is based on GP referral, so we rely on GP referral. It is a
scheme that is essentially based on giving you assistance to get to the closest specialist. If the GP
has reason for thinking that is not the most appropriate specialist for this particular patient they
are able to say that in their referral. So the scheme is open to being used the right way but it is
also, because of the administrative clumsiness of the scheme, open to being misinterpreted. We
have a lot of overseas trained doctors out in the country now and a lot of doctors who have
become quite disengaged from mainstream services, so the connection with the patient to the

                                        COMMUNITY AFFAIRS
CA 8                                          Senate                            Friday, 13 July 2007


scheme is often premised upon the quality of care at the GP level, which is out of our hands. Our
challenge is to try to make it as user friendly for GPs as it is for patients.

  Mr Mills—Where we do become aware of a situation where a patient may have travelled and
the GP did not tell them about the scheme because they did not think of it at the time or they did
not think that the patient needed the assistance for whatever reason it was, if the patient comes
back to us subsequently with the appropriate documentation, we will generally be able to
organise assistance for them retrospectively to make sure they do get that assistance and they do
not miss out just because they did not know about the scheme and did not ask about it or because
the doctor forgot to tell them about it or give them the form.

  Senator ADAMS—How long is it since you were in Kalgoorlie?

  Mr Mills—I was in Kalgoorlie until two months ago. I have been in Kalgoorlie for the past
eight years or so.

  Senator ADAMS—Have you seen the submission that came from Barry Haase’s office in
Kalgoorlie?

  Mr Mills—No, I have not.

   Senator ADAMS—There are 30 people that have accessed PATS mainly out of Kalgoorlie
itself and a number from Carnarvon and other areas of his electorate. There is obviously a huge
problem there with your PATS clerk at Kalgoorlie. It would be worth you looking at those
submissions. The next issue I would like to talk about is the hospital budgets versus PATS and
the clerks or the administration area that administrates PATS. The GP insists that someone is
going to a specialist and then the PATS clerk says: ‘No, you can’t go there. You have to go
somewhere else.’ We have had a number of submissions coming up with these issues. Once
again, where is this system breaking down? It appears to be that the flexibility that you are
talking about is not there. A lot of these people unfortunately consider that bucket of money to be
theirs and they are all very powerful in the community. This is with these small communities.

   Mrs O’Farrell—There is a couple of issues in that. The PATS clerks are not the clinicians and
are not allowed to fiddle with the referral but they do have a job to make sure that the patient is
eligible. We have a lot of doctors who simply refer patients where the patients want to go and
when the patients turn up the eligibility cannot be met. It may be a referral to a general surgeon,
we may have a general surgeon available in that hospital, and the PATS is declined. That may be
one aspect.

   The other aspect is an issue I wanted to bring up anyway. This is the rub here: there is no
budget for PATS. We are allocated a budget, I allocate a budget to regions, they allocate budgets
to the health care units and PATS has to be paid for within that budget. It may be very helpful in
the future if we could have a stand-alone line item budget for PATS based on a more generous
application of the scheme and based on what PATS cost and indexed annually. We would love
that. My proposition to you is that that would be a great way to go, because as long as PATS
money is integrated with hospital budget money, there is no saving to a hospital if a patient has
to be sent on PATS to Perth. We have to pay for PATS and pay for hospitals, so there is always a
tension between PATS and the operation of budgets.

                                     COMMUNITY AFFAIRS
Friday, 13 July 2007                            Senate                                           CA 9


   So, yes, we do administer it, but we are forced to administer it as tightly as we can within the
guidelines while still being flexible and sympathetic to individual patient circumstances. Yes, our
PATS clerks are there to make sure that the patients who are going are eligible to go. You
mentioned the group of GPs who just do not bother referring patients to PATS, and there is a
group of disadvantaged patients because they are missing out. That is one group of GPs. There is
also a group of GPs who just refer patients to wherever they want to go but, unfortunately, they
are not eligible. It is left to our PATS clerks to manage that interface with the patient, and we
often get a lot of complaints because patients say, ‘My doctor said I can go and some PATS clerk
told me I can’t.’

  Mr Mills—Some of our PATS clerks are subjected to some fairly unreasonable treatment at
the hands of the people they have to decline applications for.

   Senator ADAMS—Some of their patients are too, unfortunately, and these are the ones that I
think you will hear about from Michele Kosky later on. It really is very difficult. This is about
the patient. This is where I feel that the system really and truly falls down. Surely the patient’s
health is the important thing. If they are able to go to the most appropriate specialist and be
treated appropriately, they are going to cost the health system a lot less in the long run. My
whole basis for this comes from that: right throughout the submission it is about cost. As far as I
am concerned it is about patients, and you now how passionate I am about rural people. You
come from a rural area. I do too. I just hate it when my people, who really and truly are the most
honest, hard-working people, are treated in a way that they are being denied something, and so
they do not have treatment. It is just unfair.

   Mrs O’Farrell—I absolutely agree with you. Our difficulty is that we are accountable for
managing budgets as well as caring and advocating for patients, and we have to sometimes make
some tough decisions. If we have customer relations problems from area to area in the way that
PATS clerks are handling people—and I think we probably do have; we have a lot of sites and a
lot of these people. I think we have some really fantastic people out there, but we probably have
some people who could do better in the customer relations area—we try and deal with those
issues as they come up.

  Senator ADAMS—What training do they have?

  Mrs O’Farrell—Some of them have had good training and have lots of experience. More
recently, though, with the staff turnover and the difficulty in getting experienced people it is a
matter of getting people and training them on the job.

   Mr Mills—Because of the difficulties that are involved it is actually a very difficult job to fill.
When a PATS clerk goes on leave we are frequently faced with the situation that nobody wants
to do the job; it is an unpopular job. When you do it, you cop an uncomfortable degree of heat. It
is not a highly paid role. So just getting people into that job can be quite challenging.

  Mrs O’Farrell—It is, of necessity in our world, a rationed scheme. So whoever gets the job
of managing the front line at a customer relations level has a tough job. Some of them are very
good at it and some of them are probably a bit officious.




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  Ms Eslick—That is one of the reasons why we are looking to try and increase the
regionalisation of the scheme. In the bigger regional centres we have a full-time PATS clerk who
can have training, who has some expertise and a lot of knowledge about the scheme. In small
hospitals the person who is administering PATS is doing it as just a small part of a larger job, and
they often do not know the scheme as well as they might.

  Senator ADAMS—Getting on to your regionalisation plan for the administration, how are the
patients physically going to get their forms back if they do not have any electronic
communication?

  Ms Eslick—In the current times of paper based forms they can still take the form to the local
hospital and it will be faxed through but it is hoped that, in the future, doctors will be able to
email the form from their surgeries through to the relevant hospital.

  Senator ADAMS—And the patient will not be required to go back and get it signed.

  Ms Eslick—Quite right.

   Senator ADAMS—There are cases now where, because the PATS form is so cumbersome,
GPs are insisting the patient go back for another session to have their PATS form filled out and
signed. It is all becoming just a little bit too difficult. There is also the other thing about the
scheme not being marketed. One of your health services and a very good director of nursing
whom I have known for a long time said, ‘There is no way that we are going to advertise PATS,
because of the hospital budget.’

  Mrs O’Farrell—What is the point of marketing?

  Senator ADAMS—That is right: it is all about cost. But where do the people fit in? But you
have said that. I just think we have got to really turn this thing on its head and look at it.

  Mrs O’Farrell—I do not disagree with you; it is just that we are not in a position to do that.

  Senator ADAMS—I realise that.

   Senator MOORE—I have a couple of questions, some of which you might be able to take on
notice and get some more information on. I am particularly interested in the meet-and-assist
program, which generated one line in your written submission but considerably more in your
presentation, and I would like some more information. If I can refer you to the evidence we took
in Alice Springs, we spent a lot of time talking with people about the ownership of the patient
from the time they leave a community to the time they get back. I think the scheme you have
described is addressing that. I would like to get an idea of who funds it. Is it linked to the
Aboriginal and Islander medical services? How does it link in with the community? What is the
budget and for how long is that system funded? How many people are employed and what is
their training basis? If I can get that information on notice rather than take time now, that would
be good.

  Ms Eslick—Okay, we will send some written information about that.


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  Senator MOORE—I would like to know what the appeal system is for the PATS process. I
am sure you have read the submissions presented to the committee, and there are some others to
which Senator Adams referred, in which individual people put their cases about having to come
back three or four times. Your submission does not tell me what the appeal system for PATS is in
Western Australia.

  Mr Mills—The process generally is that, if an applicant for assistance is dissatisfied with the
decision, they would then approach the regional director of the health service in the region
concerned.

  Mrs O’Farrell—I have delegated authority for the regional directors to make a decision based
on the merits of the case. It is then referred to me, and quite often people write to the minister.

  Senator MOORE—Is there ministerial discretion?

  Mrs O’Farrell—Absolutely.

   Senator MOORE—So the minister can overturn a decision. In the submission we have from
Cancer Voices, in Bunbury—we could use any submission but I thought it is easier to talk about
this one because it actually gives a case. I am not quite sure which health service it fits into but it
is about an issue with oncologists and where PATS had actually talked to someone locally. The
GP had suggested two doctors in Perth who specialised in the type of cancer that this patient had.
In this case the patient said—and I know it is anecdotal—‘I was refused PATS even though my
GP tried to insist. After three months of treatment in Perth, it was agreed to give me PATS but
not for all the previous visits.’

   The reason I am asking this question is that we talked earlier about the GP being the medical
referral and the PATS person being administrative. The guidelines say, ‘Most appropriate
surgeon,’ and I know you could debate for three years about what ‘appropriate’ means in that
sense, but, increasingly, people with cancer are focusing around one form of treatment. So this
was in Bunbury and the GP had said on the referral, ‘I want the patient to go and see these
specialists’—I would imagine in Perth and I would imagine at one of the specialist hospitals—
and they had to keep going and getting their treatment, not knowing where they fitted with
PATS. Also in that process is the degree of stress and concern at a most vulnerable time. In that
type of case, when a GP has actually put on the referral, ‘I want Claire Moore to go to this
hospital to see this specialist,’ and allegedly the PATS person has said, ‘There is a person in
Bunbury who has the skill to treat your condition,’ what happens then?

  Mr Mills—It is not sufficient for the doctor to simply say, ‘I want this patient to go to
specialist X.’

  Senator MOORE—Why?

  Mr Mills—Because we know that in a lot of instances, unfortunately, doctors are pressured. I
have spoken to many doctors over the years about PATS and their experience of it. Some doctors
are subjected to a great deal of pressure from patients demanding to go either to a particular
doctor they have may have seen some time before who is not the nearest doctor or to a particular
location, and the doctors do not see themselves as owning the scheme. If someone is going to

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say no to a patient they will say to me, ‘It is going to be you. It is not going to be me as the
patient’s doctor.’

  What we do in those sorts of circumstances if the doctor feels that another specialist other than
the local specialist or the nearest specialist is more appropriate, we would ask them for a
justification for that. It is not the PATS clerk who would be doing that. We would expect the
PATS clerk to go to someone who is a relatively senior clinician, it might be a senior nurse, it
might be the medical director of the local facility, and have them discuss the situation with the
GP who is making the referral and then say, ‘Okay. I am satisfied with the explanation the doctor
has given. It is appropriate for this person to go to the specialist in Perth.’ Or, ‘I am not satisfied
with the explanation. The patient could be reasonably treated locally and if they want to go to
Perth, then that is a personal decision that they are making and they will not be eligible for
assistance under the scheme.’

  Senator MOORE——What time frame does this cover?

  Mr Mills—It should be prompt.

   Senator MOORE—I am deeply concerned with the time frames we have heard about in the
several areas in which we have heard evidence now, in the sense of the urgency of getting
treatment as quickly as possible in many conditions, but particularly with cancer. I know this is
not just in WA; we heard similar evidence in Alice Springs of allegations of pressure and the
ownership of the decision. Some people say it should be purely medical but then some people
say their medical practitioners are too close and perhaps are not the most objective decision
makers. That is something we will have to talk about. It comes up consistently. What I am
unhappy about is that this trauma is going on at the same time as the patient is least able to take
ownership of the situation and it can go on for a long time.

   Mrs O’Farrell—It doesn’t generally. If there is a clinical issue, that is generally the easiest
thing to deal with because it is simply a matter of getting a clinician to speak to the clinician and
sort it out. Often there is no good reason clinically. It is often the case, as has been pointed out,
that the patient has pressured the doctor. The doctor has said, ‘I am not going to own this
problem. I am going to leave it to the health service to sort out,’ and we are the odium. When it
is discussed between two clinicians, it transpires that it is simply an idiosyncratic patient
preference not a clinical need, and that the local service can handle it quite well. So that is then
the decision that is enacted by the PATS people and that is what then sometimes results in the
unhappiness of the patient.

  Senator MOORE—How is that decision documented?

  Mrs O’Farrell—I do not know. It may not be.

   Mr Mills—It may or may not be documented. It is not necessarily appropriate for detailed
clinical information to actually be recorded on the administrative form. It may simply be a
discussion between the medical director and the GP who made the referral. The medical director
will then simply advise the PATS clerk, ‘I support approval of this claim’ or ‘I do not support the
approval of this claim.’


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  Senator MOORE—Who communicates that to the patient and their family?

  Mr Mills—That would be the PATS clerk.

  Senator MOORE—I will end with this: in terms of me as the patient, how do I find out that
someone above me has decided that it is a result of my pressure on the GP and has overturned
my preference?

  Mr Mills—I would expect that you would be told that on discussion with the GP it has been
determined that this service can be provided locally and therefore you are not eligible for
assistance if you want to travel to Perth or to wherever else.

  Mrs O’Farrell—Ideally, if the patient is unhappy with that they would be channelled
immediately through to the regional director for either correspondence or personal interchange
which quite often happens.

  Senator MOORE—First of all, I seek your form. The NT government and the ACT
government bought their forms with them to show them to us. Senator Adams has mentioned a
couple of times the complexity of the WA form and I have not seen it. That would be useful. We
would like to see the kind of PR stuff that is put out to explain to me as a patient what my levels
of appeal are and how I would be able to take that up. Are the forms in here?

  Ms Eslick—The form is not but the appeal process should be detailed in there.

  Senator MOORE—I just think that clarity of appeal would be useful.

  Ms Eslick—Before you move on, could I just add that we hope that, for cancer patients
particularly, access to services will be vastly improved. We have recently appointed cancer care
coordinators in each of our regions and one of their roles is to assist patient access to treatment
and advocate for patients.

   Mrs O’Farrell—We aim for a better level of communication between the patient and the
health service brokered by the cancer coordinator. I go back to the fact that this is a rationed
scheme and it is based on a financial assistance to patients who are unable to access the care they
need locally. If the services are available locally—we put a lot of money into making the
services available locally—we try our best to get people to use those services unless there is a
compelling clinical reason which needs to be discussed between clinicians. It is not a PATS clerk
decision to deny a patient access to an appropriate specialist service and it is often subjective
around what is appropriate or not. But again it goes back to the fact that this is a guideline based,
rationed scheme and that is the current policy premise on which we operate it.

  Senator MOORE—Has the money run out?

   Mr Mills—PATS is part of a hospital’s budget. Every dollar that is spent on the PATS is a
dollar that is not available to employ doctors or nurses, or buy medical equipment or whatever
else it might be. Obviously at the beginning of the year when you get your budget you look at it,
break it up and say, ‘This is what I am going to plan to use this money on and I will put $2


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million’—or whatever it might be—‘on the line for PATS.’ But if that runs over and it becomes
$2.5 million, that has to be picked up by cutting back on other items within the budget.

  Mrs O’Farrell—It costs what it costs, and we do not constrain any healthcare unit or PATS
group of people by saying, ‘This is your budget and if you run out, you run out.’ They are not
managing to a budget. They are managing a patient service. It costs what it costs.

  Mr Mills—So we do not stop paying PATS assistance at the end of the year because we have
run out of money. We still have to pay everything that comes through the door, but the source of
the money for that is the hospital’s budget.

  Senator ADAMS—And if the hospital’s budget is overrun?

  Mrs O’Farrell—We have to manage that as an area health service. Some hospital budgets
overrun, some do not. We have to balance out the money. That is our job.

   Mr Mills—We go into debt but potentially we go into deficit and we finish up with a cash
flow problem.

  Ms Eslick—I think the numbers of trips is around about five per cent, but I can give you the
accurate figures.

  Senator ADAMS—It is a huge growth and it is over Australia.

  Ms Eslick—The growth in expenditure is higher than the growth in the number of trips and
that is largely dependent upon the price of airfares.

  Mrs O’Farrell—That is the cost of travel.

  Senator WEBBER—We received evidence in Melbourne, obviously the success of the
scheme is not only a financial issue but depends on the personalities that run the scheme. In
Victoria we heard evidence—was it in Bendigo?

  Senator MOORE—Yes.

   Senator WEBBER—Bendigo obviously had an issue with their PATS clerk too because it
was not working very well either but other areas were. So that is obviously an important
ingredient. One of the other issues that has been raised is not only the commitment to PATS but
the development of other ways of delivering medical services within remote and regional
Australia. We have had companies that come and see us looking at developing more oral forms
of treatment for cancer, telehealth and what have you. Could give me an outline as to how we
balance those two and make sure that we therefore channel people to PATS only when they need
it and keep them home as long as we can for the psychosocial support that they need?

   Mrs O’Farrell—It has always been the underpinning policy in Western Australian rural
health that money is better spent on providing services locally. So we have tended to channel a
lot more money into getting specialists visiting and doing outreach services and, more recently,
into trying to get people scheduled for telemedicine based services, to limit the number of times

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people have to travel. So maybe in an episode of health care whereas people might have needed
to go up and down or down and up to Perth several times, we can reduce that to once or twice
and do a lot of work-up and consultation services around using telemedicine. Increasing services
locally has been what we have been all about.

   The difficulty I think for us is that we are losing ground. We have had quite a lot of success in
recent years but we are losing ground with that strategy at the moment because the workforce
shortages that we forecast five years ago are now with us and they are getting worse. So we have
lots of vacancies, we have lots of services where the skills mix is skewed and out of plumb; we
have lots of services that are completely failed and we have some that are so fragile—they work
some days and not on others. The Pilbara region is absolutely in tremendous difficulty at the
moment with fragile services. We have enormous numbers of overseas trained doctors who are
not familiar with the Western Australian system and who have varying skills mix, so our services
have never been so challenged.

   To try and operate PATS in the same old way as it has been operating in an environment where
the services that would ordinarily be available locally are sometimes there and sometimes not, is
starting to create some more tension. So I am not surprised that you are getting evidence at the
moment around unhappiness. You may have a take on it, others providing you with evidence
may have a take on what it is all about, but I would put it to you that we have a deeper
understanding of what is causing that because we know more than anybody, in every region,
what the forces and factors are that are pounding on our health services at the moment. So I
think we are on the cusp. Perhaps this is time to come up with a patient access financial
assistance scheme that is a bit more friendly to country people in the current environment than it
has been in an environment which assumes you have got a pretty good and stable fleet of
services out in the region. We just do not have that stability at the moment and we are probably
not going to have it for quite some time. We would say, as a health service, advocating for our
country people, that there is a financial assistance scheme that needs to be redesigned to
accommodate people’s needs in that environment.

  Senator POLLEY—Should that be a national scheme?

   Mrs O’Farrell—We do not do it 100 per cent perfectly and there is a lot of room for
improvement, but I think strengthen the scheme locally, work on administering it in a much
more user friendly way here and build the benefits up. I would strongly suggest targeting those
benefits to the highest users and the most disadvantaged people as we have already started it. It
is capable of being improved. It is better to work on better administration of it locally. I think
there is a compelling case for increasing the level of benefits because country people are just not
getting the access that they used to get. Obstetric services are becoming harder to deliver.
Anaesthetic services are harder to deliver. General surgeons are in scarce supply; they threw
away the mould and they are not making generalist positions. Procedural trained GPs that are
willing to go out into the bush, which are the backbone of our country hospital system, are not
being made any more. I would contend, that is just going to be the way the rural health service
delivery is going to be. That is why we have introduced a regional hub-and-spoke model because
it is the only way we think that you can try and maintain at least some services in a region in the
face of those workforce difficulties. I think what is needed now is to craft an access and financial
assistance scheme that fits within that environment, rather than one that was built back in the
1970s and 1980s based on all the old assumptions.

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   Mr Mills—I think the risk with a national scheme is a one-size-fits-all type of approach when
you have got such a vastly different situation in, say, Victoria and the eastern seaboard, where
you have got a lot of very large regional centres with teaching hospitals and extensive specialist
resources. The sort of network that works there does not necessarily meet the needs in a massive
state like Western Australia that does not have those very large regional centres and those centres
of specialist expertise which people can access from almost anywhere within the state within a
relatively short distance.

   Mrs O’Farrell—If the government is unable to provide reliable services in the bush—as it
cannot in many places in Western Australia—then it should provide a fair and reasonable and
easy to access financial assistance scheme. I contend that it would be a great thing for Western
Australian country people. I contend that the management of that should be integrated, but I
think it should be financed as a country benefit scheme. The old IPTAS scheme was, and the
PAT Scheme has become embedded just with ordinary hospital operating budgets and I think it is
a social justice benefit for country people that should be a stand-alone item.

   Senator WEBBER—The only other issue I want to raise, particularly given what is currently
going on in Perth, is the $35 a night accommodation fee. That is one thing that is constantly
raised because there is a shortage of provided accommodation, as I am sure Cancer Voices will
tell us. You cannot find anywhere to stay in Perth for $35 a night, particularly if you are coming
here for an extended period for cancer treatment or the like. Would it be feasible for the
committee to recommend something with respect to that fee?

  Mrs O’Farrell—Yes. I do not think it is a high enough level of benefit. We have looked at
changing it, but we are simply not in a financial position to do so. I do not think the fair-minded
person would see it as being a reasonable contribution to the real costs of accommodation.

   Senator POLLEY—Thank you for your submission. Tasmania has far more diversified
regional challenges in health because all its population is dispersed around the state, so we know
very well what it is like for patient assisted travel. When I was talking about a national scheme
we have had complaints that people who do move from region to region or from state to state
find it confusing because there is not a standardised administration of PATS. Do you have any
comment on that?

   Mrs O’Farrell—I do not know how material that issue is. I do not see it as a major material
issue. I think states should run schemes that are unique and designed to meet the needs of those
patients. Whether there is some benefit in at least a sort of overriding national set of criteria
guidelines—probably.

  Mr Mills—I think it will always have to be administered differently, because of sheer issues
of geography and how you can deliver a service in a very large state with a sparse population
compared to smaller states with more concentrated populations.

  Mrs O’Farrell—WA tends to fare fairly badly out of national schemes, so I do not have—

  Senator MOORE—We are reminded of that regularly in this committee.



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   Senator POLLEY—In relation to the specialist service in Bunbury and whether or not that
specialist is adequate for the care of a patient as opposed to a patient’s preference to come to the
city, what criteria is used to assess a specialist’s ability to treat patients?

   Mrs O’Farrell—It goes to the system of credentialing that we have and clinical governance.
The various specialists have skills and qualifications and credentials. For us, these people are
typically private practitioners in the southern part of the state. They provide services in our
hospital on a fee-for-service basis. They go through a credentialing process and they are
accredited to provide a certain range of services. So if that individual is accredited to treat
particular types of cancers, then that is in the system and on the books. If the case is that this
particular patient has a cancer for which there is a specialist in Perth, who is on the leading edge
and is doing different things, and that patient would benefit from that and if the specialist locally
is not strong in that area then there is a compelling case.

   I am not saying that it transpires that there is a perfect process every time and I do not think
we get it right all the time. When people fall through the cracks it may be that we are not quick
enough and sensitive enough to the patient’s needs. There may be a degree of clumsiness around
managing that particular process. We are vulnerable to that sort of thing, because we are
operating this scheme in so many different sites with so many different people. It is largely a
private GP referral base that is operating in a private world. They are not always that interested
in participating in the PAT Scheme so they will often express enormous frustration with it. But
when you ask: ‘What would you like to make it easier for you so you can understand what
services we provide locally, what the local specialists are credentialed to do and how can we
help you redesign the forms and make it easier?’ we often get the response, ‘Go away, I’m too
busy. I’m not interested.’ They are not an easy group of people to harness, to get their
intelligence and guidance as to how we would design the system in a way that suits them in their
very busy practice world and for them to provide what they want in terms of a better quality
service for their patient, although we work on that and we have some good success in some
areas.

  Senator POLLEY—What is the average waiting period to see a specialist in regional areas?

   Mrs O’Farrell—It is very quick. To that extent, I think country people have much better
access. There is a much higher level of access to a bed based service than there is in the
metropolitan area. There is a much higher level of access to a high-quality and, generally, local
nursing home place; to respite care for aged people; to a home and community based service; to
GPs; to specialists; and, to operating services in the main. Where we can provide services,
people do enjoy fairly rapid access to a locally provided fairly user-friendly service. In an ideal
environment, their private GP and their private specialist is also the GP or the specialist treating
them in hospital. It is fairly seamless when it works well but, as I have said, it is starting to
become quite fragile and in some places it is breaking down a little bit. So the connections and
linkages that were all premised on this nice local arrangement are being challenged a lot because
of workforce problems.

   Senator POLLEY—You have talked about flexibility, and I listened carefully to the
comments in your opening statement on escorts and the fact that, for some patients, their escort
is in some ways more of a hindrance than a help to them. What balance do you put in place for



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the psychological benefits of having someone who can give that sort of support to a patient who
has to travel with serious illnesses?

   Mrs O’Farrell—As much as we can. Ideally, if there is somebody who will be very
vulnerable and has language challenges, tensions and anxieties related to their health condition,
it is preferable to find a competent escort. It is a much better deal for us to have a really
competent escort. We have a lot of trips, a lot of patients accompanied by escorts. Escorts cost us
a lot of money and we do not consider the financial aspects of whether we send an escort. It is
really about the need for an escort and the competency of the escort.

  Senator POLLEY—I have served on a hospital board and I had difficulties to make a stand-
alone budget work. What process would need to be put in place to achieve that?

   Mrs O’Farrell—I am talking about a line item in the allocation. It would be a good look if
state governments, within their health budget, provided a stand-alone item that is almost a visible
contribution—‘This is the PATS allocation. It is based on this set of criteria, on these sorts of
benefits. It is annually reviewed; it is annually indexed and it is cost based.’ And it just sits there,
it is allocated, it is integrated with our budget, but people have a very tangible idea of the state’s
contribution to assisting country people. I think there would be some benefit in making it visible
and setting it up on the basis of a fair and reasonable set of guidelines and benefits and making it
much more friendly, easy to access and a bit more generous.

  Senator POLLEY—What is the federal government’s role in this stand-alone budget? Do
they need to have a stand-alone budget item for PATS so that they take a responsibility so the
community can see that the federal government is also contributing?

  Mrs O’Farrell—They do not allocate a PATS’ budget to the state. All of the Commonwealth
moneys for health coming to the state are packaged up through the health care agreement and it
probably would be a bit difficult.

  Senator POLLEY—It may be something that needs to be on the COAG agenda?

  Mrs O’Farrell—Possibly. There may be some value in that. Perhaps getting everyone to sign
up to at least some broad guidelines. If you could get all the states to sign up to those, it may be
useful.

    Senator ADAMS—Just on the escorts, psycho-social versus medical seems to be one of the
biggest bugbears of the lot. It is really difficult. I am now coming from the point of view of the
south and Kalgoorlie—I think we will leave the north, because we know the problems and, in a
way, they are probably a bit more difficult. With respect to someone who is having long-term
treatment, a case just came to me and it created quite a lot of angst. A woman had a very nasty
cancer and had an adverse reaction to her treatment, so it meant that she ended up in intensive
care for five days. While the husband was there at the bed and doing everything possible, he was
staying at Crawford Lodge. He was then billed for the five nights that she was in hospital. He
was not considered to be a carer, so he was billed the full amount for the cost of the
accommodation. There are all these little things that happen, yet he was there and she was very
ill.


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  Mr Mills—Are you saying he was not regarded by Crawford Lodge as an escort or he was not
regarded by PATS as an escort?

  Senator ADAMS—Because his wife was in hospital and he was therefore not doing the escort
duty, in brackets, he was charged five nights full accommodation at Crawford Lodge. That,
apparently, is in the rules. These are the things that do not help. They had problems with whether
he was an escort, because he could not be there to help her medically. I think in this day and age,
especially for people with cancer, it is very difficult for people coming up to the city and not
being able to have someone there with them. It is a long time and the whole thing just backfires,
but I just thought that was terrible.

   Mrs O’Farrell—I think that goes to the point I was making about trying to package and target
some benefits to particular groups of patients. There is probably a case to do that with cancer
sufferers—because the idea is to get them to the best service—and to have a good advocacy
program so that all of their various complex needs can be met and, if there is a psychosocial
issue, have somebody who is able to translate that and influence a course of action for that
patient. There is room and a need to be more generous in the benefits for patients generally in the
country, but particularly for certain groups of patients who will be accessing a lot of services and
going through a lot of stress and trauma. They need all the help they can get. Our scheme does
not differentiate for those people. It is a standard scheme for all people—for example, if you
have an ingrown toenail and you need to get it chopped off. So there is lots of scope to make it
much better. The problem currently for us is that it is a highly rationed scheme and it has to be
managed as another expenditure, because it is not capped. We do not cap it. It costs what it costs;
therefore, it is a significant budget pressure point for us. We try to administer the scheme so that
we filter out the people who are not eligible. We are obviously under some pressure to keep our
budget management intact. But, if it were better funded, there would be scope to better design it.

   Mr Mills—In a scheme like this you have got two choices: basically you either open the
floodgates and provide a high level of benefit to everybody who walks in the door at enormous
cost or you try and fence it in some way by putting some rules around who gets an escort and
who gets an airfare as opposed to service et cetera. As soon as you do that, you have drawn a
line. There are always going to be the set of cases that are only just over the line and that are
going to feel aggrieved that they have missed out and someone else has got it. So wherever you
draw a policy line like that, you are always going to come up against this problem of cases that
are very close to where the line has been drawn.

   Mrs O’Farrell—Take the temptation—and I have often thought about it—to just open the
floodgates. What would really happen? We would have what we have always been afraid of: not
only the exponential cost factor, but also the services that you have got in the regions might
erode even further because some of them are based on economic viability for the practitioners. I
doubt that they would thank us if we opened up an avenue for people to come to Perth and
bypass local services. But I ask myself: could you get around that? The patients are now given
choice. You are in a market where you have got to be competitive so you go and offer value and
all of the benefits that you can to the patient and it is up to you to seduce those patients to use
your service because the power is in their hands: they have got a choice. It is not really now a
scheme that is governed around forcing them and channelling them to you. I have not explored
that in terms of the impact, but with PATS the more you try to build in—‘We’ll have this benefit
for that and that benefit for this group of people’—the difficulty is that you then make the

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scheme more and more cumbersome to administer. Then, as Ken says, there are always these
people who do not quite meet the criteria, so you have got avenues for more and more
complaints. It has remained as being operated on a fairly standard guideline basis with pretty
much one size fits all and with some scope for some flexing at a regional level. So it would be
yes, we could change it; we could make it worse and more difficult to administer but generate
some benefits to particular groups of people or we could just say, ‘Just let them have what they
want,’ and look at what is the impact on local services from that.

  Senator MOORE—Chair, could I ask a question on notice?

  CHAIR—Yes.

  Senator MOORE—Ms Eslick, one of the things you did mention was the change in transport,
given that some company had fallen over.

  Ms Eslick—Yes.

   Senator MOORE—We had similar evidence in Alice Springs and I put a question on notice
there as well. Being totally ignorant of the Western Australian transport system, I ask: whom do I
ask about what transport is available? We have consistently had evidence that for people who are
ill buses are not the best way to go but it could be the only way to go. What piqued my interest
in Alice Springs was a statement that the Indigenous air services had closed. I am wanting to find
out this: how do we find out about the transport system in WA and what is available? I think that
is an issue that crosses over with this inquiry.

  Ms Eslick—That would be the department of planning and industry.

   Mrs O’Farrell—Generally, it falls to us as the funder of last resort and we will end up having
to charter aircraft.

  Senator MOORE—That came out consistently about PATS, and your leaflet talks about it on
the premise that there is—

  Mrs O’Farrell—PATS is not a transport scheme. PATS is a financial assistance scheme. It
depends upon the availability of transport and often it is not available and it falls to us to find a
solution.

 Senator MOORE—If we get some information on transport, we can go from there. That
would be very useful.

  CHAIR—We are running out of time. I have got a few questions that I might ask you to take
on notice as well if you wouldn’t mind. There was mention in your submission of adjusting the
level of fuel subsidy and so forth. Is there a benchmark or a targeting of a level of assistance that
people might be thought to require to access the scheme on an equitable basis? That is, are you
aiming to cover roughly 20 or 30 per cent of their costs or a percentage of their travel costs and a
small percentage of their accommodation costs? Any sort of idea of benchmarking or targeting
would be useful in understanding how that works.


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  There were a few comments made in other submissions which I like you to get back to us on,
please. Page 4 of the Cancer Voices submission makes reference to a patient from Kalgoorlie
who complained that even if they got the lowest level of subsidy they were not allowed to
choose the method of transport that they would use: rail, bus or vehicle. Would you like to
comment on whether or not that is an accurate criticism?

  Mr Mills—Yes, I can say categorically it is not. They have a choice. What they do not have a
choice of is air, but they have a choice as to this: if they want to take their own car that is fine, or
we can organise for them to go by bus or by rail.

  Mrs O’Farrell—And we pay the same benefit.

  CHAIR—So they could not take the car subsidy, the per kilometre subsidy, and still fly?

  Mr Mills—No.

  CHAIR—On page 2 of the Health Consumers submission there is reference to the problem of
PATS allowing a return flight during an extended period of stay in another centre if the cost of
the accommodation of a patient between appointments becomes more expensive than the cost of
the flight. They refer to the case of a patient who was required to stay for six weeks between
appointments because it was still cheaper for them to stay than it was to fly them back to
wherever they came from. A confirmation of whether that is the case would be useful.

  Finally, there are a couple of points in the submission from Princess Margaret Hospital. They
say that they have been requesting PATS pamphlets for over six months without success. If that
could be confirmed that would be useful. You mentioned the idea of electronic accessing of
applications. Can we have some sort of outline of the time line for when people might be able to,
for example, make an online application under PATS, if that is part of your envisaged
improvements to the scheme?

   Thank you very much for the time you have spent with us today. It has been very enlightening.
I offer our thanks for the submission which Minister McGinty has provided to the committee.




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[10.49 am]

BAILEY, Ms Belinda Ellen Scott, Director, Cancer Services, Cancer Council WA

DEVERALL, Mr Clive, Chair, Cancer Voices WA

  CHAIR—I welcome representatives of Cancer Voices WA and of the Cancer Council of WA.
You have had information on parliamentary privilege, the protection of witnesses and evidence
given to you. We have submissions from both your organisations and we thank you for those. We
have questions that we would like to ask you but, firstly, I invite you, if you wish, to make a
short opening statement to kick things off.

  Mr Deverall—I would like to circulate some additional comments which supplement the
written submission from Cancer Voices Western Australia. We are a consumer group. We are not
a support group. We are there to advocate on behalf of cancer patients and their carers in the
context of delivery of services such as treatment and psychosocial support.

   One point I would like to make to begin with is that all the support groups I am involved with,
and also the advocacy groups, I think without exception recognise that there is not a bottomless
pit of money to meet the needs of cancer patients and their carers. But what they do require is
transparent, easy-to-understand information. In the event that funding is not available for
something, whether it is a drug or transport, then people need to know what is available and
what is not available so that they can make their own arrangements. I think that is very important
in the context of this particular service and other issues relating to supply and demand.

   The written submission that we have put in was the result of bringing together 23 patients, and
four carers staying at AH Crawford Lodge, which is the Cancer Council’s country patients’
accommodation facility in Perth. Due to the high demand, they are having to provide extra
accommodation. The quotes that you have seen in that written submission are very much the tip
of the iceberg. Many patients feel inhibited about being critical of systems and services and
doctors and allied health personnel, so you really have to provide a threshold to encourage them
to describe what their experiences have been.

  Certainly the frustrations with PATS relate to the lack of clear information and a tremendous
amount of subjective decision making. Some of it relates to general practitioners—a generation
of general practitioners who regard the PATS scheme as part of socialised medicine and so do
not, in some instances, even mention it to some patients and will only very reluctantly sign the
appropriate paperwork. We also get some subjective decision making by PATS officers, and the
success and failure, as we see it, of the PATS scheme in Western Australia relates to the nature of
the person administering it at ground level. Again, that is something of a patchwork quilt. We
have asked for some considerable time for guidelines on the administration of PATS but have
never actually been provided with a copy.

   There is the issue of time: decisions can be given to patients within perhaps only 48 hours of
when they are due to go. Then they are rushing around, either ringing an 1800 number, or trying
to get hold of a PATS clerk who is not there because they are on holiday and have not been able

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to fill the position on a temporary basis. Many patients in the end just wash their hands of it and
walk away. It all becomes too much because they are sick people as well. So we have, I think, a
growing population of patients who, in the end, make their own way.

   In Western Australia radiotherapy is only available in Perth, whereas in the other main states
radiotherapy is available in regional centres as well. It is recognised virtually as an international
standard that around 50 per cent of all people who develop cancer require radiotherapy, either
curatively or palliatively. So we have a large percentage of people who get cancer and have to
come to Perth for treatment. Most treatments involving radiotherapy take weeks—six to eight
weeks for palliative radiotherapy and 12 weeks, or sometimes longer, for linear accelerators and
curative radiotherapy.

  If patients, because of the frustrations in dealing with travel and accommodation, decline to
have radiotherapy—as follow-up to their surgery or their chemotherapy, or sometimes even
preoperative radiotherapy which is to try to reduce the bulk of a tumour before they undergo
surgery—then these patients obviously prejudice their survival by not having that radiotherapy.
There is evidence from previous national inquiries, particularly in the context of breast cancer,
which endorses that scenario with patients: because of the frustrations of dealing with travel and
accommodation and other social issues, they are not following up with radiotherapy.

   Multidisciplinary treatment is in its infancy in Western Australia. There are perhaps one to
three multidisciplinary units in terms of the modern description of multidisciplinary care. There
is no multidisciplinary treatment in the regional centres because of workforce issues and
infrastructure. It is intended to provide regional cancer services which are up to national and
international standards, but at the moment regional cancer services rely on visiting specialists
and many of those will be general surgeons with no particular experience of specialised cancer
management. This is what has been described in previous inquiries as the cancer lottery. Who
they end up seeing is, I think, for regional patients, one of the main issues. The general
practitioner will recommend that they go to Perth to see a particular cancer specialist,
particularly if they have, say, head and neck cancer or cancer of the pancreas, but, no, they get
referred to the visiting specialist, who may well be a general surgeon who has no volume in
terms of treating patients with particular types of cancer. Again, this is prejudicial to the survival
of the patient. There are numerous reports in the WA cancer and palliative care network of
patients who ultimately arrive in Perth who have been poorly managed because the initial
referrals were inappropriate. This is where PATS overwhelms the clinical decision making and is
inappropriate in terms of the best needs of the patients.

  We understand there is no line item in the Department of Health in Western Australia’s budget
for PATS; it relates to what is available in the regions. If there is insufficient money to fund
people under PATS then telehealth or telephone hook-ups are essential in the context of at least
one multidisciplinary team review of each country cancer patient’s case after pathology and
radiology have been undertaken.

   As a group of consumers, we discuss this backwards and forwards all the time, because PATS
is like the Ben Hur of psychosocial issues relating to cancer—it just goes on and on—and we all
realise that there is probably no solution in terms of money. But, in terms of improving the
system and making it easier to understand so that people can make their own decisions and be
included in the decision making as opposed to having decisions delivered to them at the eleventh

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hour adding to their distress, we put up this proposal of widening the Medicare safety net, means
tested if necessary, so that travel and accommodation are added to the costs of supplementary
treatment for non-hospital care.

   Ms Bailey—As mentioned earlier, I am representing the Cancer Council and we work very
closely with Cancer Voices. The Cancer Council in Western Australia feels well placed to
comment on the PATS issue because of the unique situation of our Crawford Lodge which is the
only metropolitan accommodation facility for country cancer patients. Since 2001, we have seen
and housed 16,000 cancer patients who have come from rural Western Australia. At the moment,
per month we are turning away 30 to 55 cancer patients who have to come to the city for their
treatment and cannot find cheap accommodation in the city. We are very well versed with the
PATS clerks, the PATS administrators, and we very much see it as an administrative scheme, not
a clinical scheme. Any sort of future recommendations around access and financial schemes for
patients is a real Pandora’s box, and certainly that is what we hear from patients because they see
the system as it is, just for accommodation and travel, as a very, very complex system.

  Because we have such a lot of experience with the PATS system and we have been working
closely with consumer groups, last year we did a local investigation with the PATS clerks and the
patients to find out how they are experiencing the system. Clearly that has formed part of our
submission. The feedback we got from those patients and from the administrators was
particularly interesting. There is a whole lot of dissatisfaction with the system, whether you are
working in the health system as a PATS clerk or whether you are a patient at the receiving end.
We also held a consumer forum just a couple of months ago where accommodation and travel
was a key theme of the day. We got a lot of feedback from cancer patients about the issue.

  I think that the biggest issue that the Cancer Council sees currently is that in relation to PATS
our health department does not have a database that differentiates cancer patients from
somebody who is having an emergency obstetric issue in Port Hedland. It does not matter what
you have, the PAT system is a one-size-fits-all system. That is clearly not appropriate for cancer
patients because we know they have unique psychosocial issues different to anybody else with
any other sort of acute or chronic condition, which is well-evidenced by the fact that the
NHMRC have specific psychosocial guidelines for cancer patients. If you look at any other
chronic disease, like diabetes or arthritis, there are not NHMRC psychosocial guidelines for
those conditions. There are for cancer because it is the most feared and the most frightening and
the most devastating diagnosis a person can get. We know they get anxious and we know they
get depressed and we know they need support. So the fact that our system does not identify
whether you are a cancer patient or not and that it does not consider whether you have different
sorts of psychosocial needs, we believe are two areas where the system could really improve.

   Again, building on that, there is no benchmarking data for the PATS scheme at the moment
and therefore we do not know how you can improve the system if you do not know what your
starting point is. Administratively there are all sorts of ways you could improve the system.

  CHAIR—Thank you both very much for those opening statements. I have a question about
the point raised in the Cancer Voices’ submission about the need for an easy to access appeal
system. Do you think that should be a system that is internal to the health department in New
South Wales, say, to a senior administrator? We were told that even the minister at the moment



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can effectively field appeals on the PAT system. Should it be semi-judicial like the AAT? How
had you envisaged such a scheme working?

  Mr Deverall—I think the important thing about appeals is that the clinical needs are
considered by somebody who knows what the clinical issues really are. We are very concerned
about the decisions that are made by, say, a nurse, however senior, in some of the country towns
as to whether that patient should or should not go and see a visiting surgeon, who is, 99 times
out of 100, a general surgeon, or whether they should be referred to Perth, to somebody who has
high-volume throughput on particular types of cancer. If the wrong decision is taken, the results
can be disastrous. The clinical thing is very important when you have a chronic disease such as
cancer, especially if it is a late diagnosis.

   In terms of the administration, it is about making sure that the appeals can be heard in time.
The message we are getting back from people is that it is Friday, they are due to travel on the
Sunday for treatment to commence on the Monday and nothing is happening. They are ringing
this number. It is about organisation methods.

  CHAIR—That would suggest that a non-judicial scheme is probably the best one.

  Mr Deverall—A good thing, yes.

  CHAIR—So the PATS ombudsman or somebody in the department.

  Mr Deverall—Someone that you can get hold of.

  CHAIR—The Cancer Council submission makes reference to the role of specialists in being
able to influence outcomes with the PATS, and you quote a particular case study on page 3:

My haematologist/ oncologist wrote a letter stating I required a carer while in Perth. This request was rejected by my
PATS clerk as I was deemed well enough to look after myself.

There was conflict between the PATS bureaucrat and the specialist. The comment has been made
to us in other evidence that sometimes the doctors get too close to the patients and the doctors
are likely to accede to a request from a patient or recommend a higher level of service because
the patient does not feel confident or they have a relationship with the patient and they want to
give the patient a sense of support. The comment has been made that it should not be they who
are making those decisions or it should be second-guessed by somebody else with the clinical
knowledge within the PATS, such as in the local hospital. What is your response to that?

  Ms Bailey—My response is that I think that is totally off the track. The reality is that, if you
have a diagnosis of cancer—and every diagnosis is unique—and you want your husband, your
wife, your daughter, your son or your mother to be with you because it is so frightening and your
doctor thinks that is that is reasonable, I would think that is where it stops. People do not put
pressure on you when they are really sick just because it is going to save them $35 a day. They
put pressure on you because they are absolutely terrified that they are going to die. These doctors
know that. I am not going to stand here and support all the doctors and the decisions they make,
but the reality is that, when sitting there with somebody who is facing a death sentence and they
want their partner to go with them because they know that they probably could get by on their

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own but they are really fearful, anxious or depressed, someone with a really good medical
qualification is not going to say, ‘I think we should get a second opinion on that.’ I think it is a
cop-out, personally.

  Senator MOORE—We have even heard comments made that doctors could be being bullied
by patients into making decisions. I think that is one step beyond being too close. I would like to
have something from a consumer perspective about that comment, about there being a feeling
that perhaps doctors could be bullied into making recommendations about treatment.

  Mr Deverall—I might be the patient from hell because I probably know too much.

  Senator MOORE—That is possible!

  Senator WEBBER—That’s not nice!

   Mr Deverall—I think general practitioners know their patients and, if they do not know their
patients, they should go and do another job. I cannot see that as a let-out; I really cannot. You are
always going to get informed patients, the internet is fuelling that all the time, and they are going
to ask questions. There are other means, we hope, being developed that doctors can refer patients
to to get information that is not generally more immediately available to them, but, in terms of
bringing pressure to bear on them to make decisions about referrals, I really cannot see that
happening.

  Ms Bailey—We are talking about assistance with travel and accommodation, and GPs and all
medical practitioners in the rural areas are dealing with this stuff all the time. They might get
bullied into prescribing antibiotics for an ear infection when we know the evidence is not around
that, but I do not think they get bullied into signing a blue form so that the patient’s husband can
come with them to Perth to get their cancer treatment.

  Senator MOORE—I do not want to dob anyone in, but I was talking about patients doing
that just for the sake of going to a doctor in Perth rather than Bunbury.

  Ms Bailey—Yes, I agree with Clive.

   Senator ADAMS—Thank you both for coming. I think we will start with accommodation.
Crawford Lodge does a wonderful job. PATS is being used more and more, and because of
technology we are finding far more rural patients with cancer, and they of course have to come
to Perth for treatment. Where do you see the future as far as your accommodation goes? You are
stretched to the limit now. You have people being turned away, and a number of those people do
not have treatment because they cannot afford to go and stay anywhere else. Could you give us
an idea about your plans for the future?

  Ms Bailey—The council’s future planning at this stage recognises that we are never, ever
going to be able to meet the needs of all the rural patients who are going to need
accommodation, no matter how many facilities we plan to put in place. However, planning
within the available resources over the next five to 10 years includes the redevelopment of
another site which will have a facility for up to 30 cancer patients and their carers, if necessary,
in the metropolitan area. Then Western Australia has, in part of its health reform plan, a

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submission for a big, new Fiona Stanley Hospital in the metropolitan area. We have put
ourselves on the plan to hopefully have a site there. But that is realistically—

  Senator MOORE—Co-located.

  Ms Bailey—Yes—hopefully co-located with the Leukaemia Foundation as well, because that
really would make a lot of sense. At the moment we are actively increasing our accommodation
availability and access, and then there is a plan for the future. But we also know that we will
never, ever meet all the need.

  Senator ADAMS—Are you getting any government assistance?

  Ms Bailey—No, we do not get any government assistance or community funded donations.
There is not a cent that goes into it. We just break even because our accommodation facility runs
on the $35 a day we get from the PATS—so the patients get their PATS and they give it to us. We
obviously subsidise it as well—a few hundred thousand dollars a year.

  Senator POLLEY—Do you get support from any other community organisations because
there is such a shortage of accommodation available?

  Ms Bailey—No, but we get an extraordinary amount of incoming support from Rotary—
peoples’ generosity and kindness is just overwhelming. There is support from those sorts of
organisations, but certainly nothing from the government sector.

   Senator ADAMS—My second question is on the McKesson call centre down in Bunbury. I
note that you have made comments about that and I have also had a number of contacts from
GPs who are very unhappy with it. Their patients have been pushed into going—once again—
inappropriately, to someone in Bunbury because a specialist is there. But it is not the specialist
the GP wants their patient to go to and they are more or less being accused of bypassing their
specialist. Could you comment on that. I know this is something for the future and that other
states are looking at it, so I would like a description from your consumers.

   Mr Deverall—We are still waiting to see the evaluation from the McKesson service because
it is an interesting experiment. Such things as the 1800 number can obviously work, but there
has to be somebody on the end who can sort out the person’s problem. Again, you come back to
the scenario of late on a Friday: come Friday, and that is it—and it does not operate on a
Saturday or Sunday. I know most of the GPs in the Bunbury-Busselton-Denmark area—right the
way down there—but I have yet to hear any one of them be positive about PATS with the
McKesson franchise. Again, if they have done an evaluation we would like to see—

  Senator ADAMS—I have asked that question, but no, they have not.

  Senator MOORE—We heard in previous evidence that it was very positive.

  Mr Deverall—One final thing is about patients being referred to a visiting specialist. An
oncologist does go down to Bunbury and some GPs prefer to recommend that their patients go to
Perth for medical oncology, chemotherapy in particular. By all accounts, the visiting medical
oncologist sees up to 55 patients in a three-hour session. I imagine that, to the delight of the state

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health department, this exercise is a cost-shifting exercise using Medicare for billing the patients.
That is where the value is.

   Ms Bailey—Can I just add something to the McKesson scenario. Obviously we spent some
time with McKesson, looking at their system, because it is so different from the rest of the PATS
administrative scheme in the state. It is as though they are damned if they do and damned if they
don’t, because what we have is the south-west system, which goes through McKesson, and they
have the PATS guidelines, which they interpret to the T. There is no room for flexibility. As
Clive says, come Friday, the regional director does not get contacted because it is a private sector
set-up and does not work that way. But they actually do everything to the absolute—they dot
their Is and cross their Ts. The rest of the state has PATS clerks who interpret the guidelines, so
you have personality issues. They often try their hardest to accommodate the patients. They
often have a bad day, and we hear all sorts of bad stories—it is all about personality stuff. So you
have two systems and neither works very well. It is about trying to find something that works
administratively for the two systems. It is a systems and processes disaster, as opposed to
anything else. Obviously there are other key issues. So I do not think McKesson, the private
sector, the call centre model, is all bad, but it definitely does not work perfectly.

   Senator POLLEY—I think that a lot of frustration comes from the administration. Is there a
role there for a national assessment and outcomes process to be adopted on PATS? Would that
alleviate some of the concerns you are raising?

   Ms Bailey—I see that from the patient’s perspective it is red tape, red tape, red tape. There are
triplicate forms and if it does not come through on the third one, you have to go back and get a
signature before the PATS clerk will rubber stamp it so that you can retrospectively get your $20.
Sometimes, when a person is facing the prospect of whether or not a tumour is going to come
back, it is just not worth going and getting the $20. You hear about the red tape from people all
the time. It is often from their partners and carers, because they are the ones who are often
running around seeing whether the GP can get the form so they can take it back to the hospital to
give it to the PATS clerk and then forward it to the specialist for the retrospective signature
before it is returned to the PATS clerk. It is just red tape. One would hope for some sort of
national investigation into and simplification of the guidelines so that you could meet local and
regional needs and get through all the red tape. After all, what are we really trying to do for
people here? How can we really help them? General practice is constantly faced with different
sorts of red tape scenarios. I am sure you are all aware that there have been all sorts of different
red tape inquiries for that part of the medical system, and this is another one of them. Often in
the rural areas it is the general practitioners who, as you know, are at the starting point, and that
is where it is failing. Maybe they should not even be doing the forms, but a medical tick is
needed. Can’t we look at the system nationally to find somebody else who could do it—the
practice nurse, the practice manager, the cancer nurse coordinator from the health system? Does
it always have to be the GP? It is red tape stuff and the patients and the GPs feel it. It is a double
whammy.

  CHAIR—Would that be solved with a national scheme, do you think?

  Ms Bailey—I think it should be investigated; it could be, yes. I do not know what the answers
are because that would be part of the process. We have talked to our colleagues in other states,
and it is the same story. Western Australia has very unique issues because our state is so huge.

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Tasmania has very unique issues because it is so small, but it is mostly rural. But I do not think
you could not find a system that fits all states with simple criteria and inclusion criteria.

  Senator POLLEY—It would be a novel idea, I am sure. Maybe they could sign their own
form.

  Ms Bailey—In relation to—

  Senator POLLEY—I guess one of the things that really bugs me is the issue about being able
to have your specialist of choice. Having your specialist of choice can mean the difference
between success and failure, which, to me, is the bottom line. I live in Launceston, which we
will say is Bunbury here. If I had a condition and needed a specialist, although there might be a
visiting specialist it does not mean that that specialist will meet my needs. Also, my GP might
say, ‘You need to see Dr X because they have more specialised experience.’ But PATS does not
seem to allow that sort of flexibility. I see a lack of availability and no real flexibility in putting
the patients’ overall wellbeing before the dollar, which is a negative situation when it comes to
health. Do you have any comments in relation to that?

  Ms Bailey—I reiterate that it is an overly burdened, complex administrative scheme with too
many boxes to tick. If you got rid of half the boxes, all of a sudden things would be a bit lighter
for everyone. On the issue around the choice of specialists, again I suppose the people who lose
out are the poorest people and the people who do not have any private health cover. They just
succumb to however many boxes there are to tick. I do not know whether this investigation or
inquiry can address that inequity.

  Mr Deverall—I would just add one point about the anxiety it causes people as to whether or
not they are seeing the best person. We quoted in our written submission the figures for the
number of trips made to Perth against the number of trips made to the regional centres by PATS
funded patients. There was a sharp increase between 2004-05 and 2005-06 of the regional
funded visits, as opposed to the visits to Perth. Obviously the benefits to the PATS hospital
budgets are significant when they go to the nearest regional centre. As consumers, all we see is
that this PATS system is funded for the convenience of the health service, not the patients.

  Senator WEBBER—Bearing in mind the time, I have only one question, and it is about the
decisions that are made in PATS about where you get to go. Your evidence earlier was about
nurses making the decisions. I accept what you have to say, but often in those communities they
are the only medical staff we have, so how do we get around that problem with the decision
making?

  Mr Deverall—This has been discussed by clinical networks around the country. We have the
technology. Radiology and pathology are done at the press of a button. It is straight on the
computer. All you need is access to one, three or a panel of cancer clinicians. They will say
immediately what the priority is. It is not difficult. They can do that once a week, twice a week
or whatever. It is very easy to do. Canada has a beautiful model that works like that.

  Senator WEBBER—I think it is important to get that on the record.



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   Senator POLLEY—Do you have any documentation on the Canadian system that you could
let the committee have?

  Mr Deverall—I have not to hand.

  Senator POLLEY—No, but could you provide it?

  Mr Deverall—It is just my experience.

   Ms Bailey—If you have a senior nurse or a nurse practitioner in your regional community,
there is no reason they cannot be the coordinator of the care. What patients want is continuity.
They want people they know, who they see at the first point of their diagnosis, to be involved
throughout. If it is the senior rural nurse or their GP, then that person needs to be engaged
throughout the process. I think they can go a long way to coordinating this multidisciplinary
team approach. In a lot of the rural areas the practice managers and practice nurses are one and
the same and they are a huge powerhouse of coordination skills. There is a lot of Commonwealth
money being put into general practice nursing in rural areas, and this is an area that could
integrate with a lot of the work that is being done at the federal level anyway.

   Senator ADAMS—Distance criteria seem to be a huge problem, especially in Western
Australia, but the other states are all different. What can we do with that? People fall through the
cracks. For cancer, Mandurah has come on board, and the Cancer Council did a lot of work to
get that. We heard in Alice Springs that there are areas where it takes three hours to travel
probably 90 kilometres on terrible dirt roads, and because they travel 200 kilometres they do not
get anything. But what can we do to get a patient focus, so that it is about the patient having
access to treatment if they live at Northam or somewhere like that and they dip out of that 100-
kilometre limit by two kilometres? It is crazy.

  Mr Deverall—Again, it comes back to clinical need. If patients have a particularly
progressive cancer which requires multiple visits over time from a place like Northam, which is
under the hundred kilometre limit, there should be the flexibility in the PATS system to
accommodate them.

   Senator MOORE—Western Australia has made some effort, more so than some of the other
states. They have tried.

  Mr Deverall—But it is the accommodation.

  Senator MOORE—They miss out on it totally.

  Mr Deverall—One of the patients quoted in the submission at the meeting we had with the 24
patients could not sit upright in the car because of the secondaries in her coccyx, so anything
more, she said, than 20 to 30 minutes was agony. One, they did not want to admit her as an in-
patient—she was ultimately admitted—but then the husband was stranded because he had to go
up and down to York every day to see her. There are lots of things like that. When somebody has
chronic, progressive disease there are clinical criteria which can be in the guidelines, but you
need somebody to adjudicate them if there are disputes.


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  Ms Bailey—You do. It is clinical and it is about each individual. I know that is hard to do in a
big, multifaceted system, but if it is you or your relative then all of a sudden you expect that
someone can find a solution for you. We recently had a case where a 70-year-old man lived
alone. He had no car. He had a health care card. His neighbour had a car, but it was a bit bombed
out and was not going to be able to get him to Perth every day. He had no family. He had to
come to Perth for radiotherapy every day for six weeks and he did not want to come. He did not
have anywhere to stay and he was not well. There was a big debate about whether PATS could
get him on a bus—not get him on a bus, but how much they would pay. He said, ‘I just really
can’t be bothered with all this.’ The radiotherapy was palliative. I used to think, ‘This is not good
enough.’ The system needs flexibility. It needs to be able to look and say, ‘What does this man
need?’ In the end we did sort it all out with the help of the cancer nurse coordinators who are a
new part of our cancer system through the health department. I think that they are going to make
a real difference to patients in this situation. They need to help navigate these accommodation
and travel issues with different patients.

  Senator MOORE—The department actually said that. They said that amongst their other
functions the coordinators were going to have advocacy roles within the PATS system, and I
thought that that was very telling.

  Ms Bailey—There are 20 new, very senior nurses who are supposed to be a network to help
navigate these patients. Whether that ends up being the case I do not know, but the reality is that
that is what should happen. It is a start.

  CHAIR—I need to clarify one thing, Mr Deverall, in your handout. You have picked up a
suggestion which the Cancer Council Australia has made about the use of the Medicare safety
net as a possible way of meeting the costs of patient travel. You say that travel and
accommodation for the purposes of diagnosis and treatment should be added as a tax deduction
under the safety net. You say that rather than adding the amounts you spend on travel and
accommodation in these circumstances to the amount that gets rebated under the safety net it
should be treated as a tax deduction. Is that correct?

  Mr Deverall—We have three retired accountants arguing about that as a small group. They
got lost. I imagine there are various options as to how you do it according to the financial status
of the patient.

  CHAIR—But you are happy for it to be used as some sort of device to help?

  Mr Deverall—Absolutely, yes.

  CHAIR—Thank you very much for your time today.

                       Proceedings suspended from 11.09 am to 11.23 am




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CHARLIE, Mr Brian, Aboriginal Program Coordinator, Health Consumers Council

KOSKY, Ms Michele, Executive Director, Health Consumers Council

  CHAIR—I welcome representatives of the Health Consumers Council of WA to the hearings
today. Do you have any comments to make on the capacity in which you appear?

  Ms Kosky—I am appearing for consumers in Western Australia.

  Mr Charlie—I am here as a support to my director.

  CHAIR—Thank you both very much for appearing and thank you for the submission the
Health Consumers Council has provided to the inquiry. I understand information on
parliamentary privilege and the protection of witnesses in evidence has been provided to you.
We are going to ask you some questions about your submission, but first would you like to make
an opening statement about the issues?

   Ms Kosky—It is a most marvellous initiative of the Senate Standing Committee on
Community Affairs to have this inquiry. It is long overdue. The inconsistencies in the Patient
Assisted Travel Scheme affect many patients across Australia in rural and remote areas. We are
very happy to be giving evidence. We have described in our submission who we are and what we
do. We provide a range of state-wide services to the community in Western Australia, including
advocacy, consumer representative training and policy review. We are unique in some ways in
Australia—although I always find it irritating when Western Australia makes itself out as a
special case, but then Tasmania and Queensland do it as well. We know we are—we do not even
have to talk about it! Our advocacy work means that we take telephone calls from the public day
in and day out, five days a week and 52 weeks a year. PATS and concerns about PATS feature
very strongly in the matters that the community raise with us. I want to assure you that I am not
sitting in some isolated academic ivory tower with views about the construction of PATS—this is
real, lived and authentic experience.

  CHAIR—Mr Charlie, do you wish to make an opening statement?

  Mr Charlie—No, thank you.

  Senator ADAMS—What are the main issues that your complaints are based on?

   Ms Kosky—For non-Aboriginal people, the issues are: confusion—they are not really clear
about what their entitlements might be—and cost. The out-of-pocket expenses, or co-payments
they have to make, have nothing to do with the reality of current prices of accommodation and
transport. Then there is the mean-spirited attitude of the Department of Health. They resist
telling people that they have something called PATS in case people exercise their right to it. That
culture has changed a little. I did not hear the Department of Health’s submission this morning,
but they have done an extraordinary review of patient transport right across rural and remote
Western Australia. That was the first time it had been done in a very comprehensive way. In


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addition, they have tried to imbue their Patient Assisted Travel Scheme clerks with some notion
of customer service and accessibility. It is a small step, but it is a beginning.

  Senator ADAMS—What about Aboriginal people and their access?

  Mr Charlie—Their issues are understanding their entitlements to PATS, questions about the
PATS clerks and the discretionary powers they have over doctors, who makes the decisions and
whether PATS have any medical experience in determining whether a patient needs an escort or
not. Who makes that decision? Other issues include travelling to strange environments and the
distance travelled. People have to stay away for extended periods from their families and there is
no avenue within PATS to assist people to have family members close by when they go for a
serious operation. When you open your eyes I am sure you do not want to see a strange face.
Hospital staff are not there to wait on people, but people need and depend on small things being
done and that is why they ask for people to come along with them. But that is not seen from the
social aspect of how people will manage themselves while they are in a strange environment.

   With regard to accessing transportation, I understand people living in metropolitan areas do
not know how to navigate themselves from north to south, but a lot of people coming up from
the Kimberley region have to navigate their way through the complex system of the metropolitan
area, which is very difficult. At times they are left stranded at certain bases, like the airport, train
stations or taxi stands, because they do not know how to use the system. I had an experience
where a client had a family member who was given a MultiRider but was not told how to use it.
He came back with a $50 fine because he purchased only one ticket.

  Senator ADAMS—Do you have any comment on confusion with escorts, whether
psychosocial or medical?

   Ms Kosky—I think there is a kind of resistance to the whole escort idea and it probably needs
to be rethought, particularly for Aboriginal people, who have a much shorter length of life.
Perhaps PATS in some modest way could contribute to extending the lives of Aboriginal people
who come from rural and remote communities. It could do that by taking a holistic approach to
the need for people to get high-quality services in the big cities but with some reflection on what
family as escorts might mean in a culturally appropriate way. For us, the escorts issue should be
based on clinical need and some social recognition of the barriers that people face—the old
equity argument that those who should benefit most should benefit first and most. By any
measure, Aboriginal people are deeply disadvantaged in health care in this country and we
should be making every effort, through every avenue, to ensure that that health care is optimal. If
perhaps that means that PATS has to pay for some family members then let’s pay for it. Let’s do
it for 10 years. Let’s make the investment and then critically evaluate it and see if it has made
some contribution to improving the health care of Aboriginal people.

  Senator ADAMS—The other thing is accommodation. The days of cheap accommodation in
Perth, $35 per night for accommodation, unfortunately have long gone. I have evidence of a
number of people who do not come to Perth because they cannot afford six weeks staying in
accommodation. Crawford Lodge is booked out, as we have been told by the Cancer Council,
and there is no other accommodation. So they weigh it up, they cannot afford the budget and
they do not have treatment. Do you get any message on that?


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  Ms Kosky—Yes, we do. People report exactly the same attitude. I think Graham Keirath was
our Minister for Health in 1996 and he made what I remember was the first public statement
about PATS, which was that we are not going to fund people to come to the games of the West
Coast Eagles. It appears to me that that attitude and that statement have in some way put a
cultural context around PATS which means that people are very reluctant to properly fund
accommodation. We get a lot of complaints that people are not able to find accommodation with
any resemblance to $35 per day. It is a joke in the same way that the petrol subsidy is a joke.
Brian will tell you that for Aboriginal people the barriers regarding accommodation are even
higher.

   Mr Charlie—I know of three accommodation services utilised by Aboriginal people. One is
totally inappropriate, which is Jewell House. It is a multistorey facility which has shared
facilities and does not have cooking facilities, so for elderly Aboriginal people that is highly
inappropriate. When talking to Aboriginal Hostels Ltd about availability of accommodation and
about what they can do to secure further accommodation, I find that they are booked out three
months in advance with PATS in most cases. Because of the influx of patients they now have a
policy about how long a patient can stay so that they can accommodate other patients. There is
no room for long-term patients to stay within those facilities—besides the Autumn centre. The
other thing attached to that is the issue of boredom. When people go to the hostel they have to
just sit outside and watch the people go by. There are no activities and there is no-one to tell
them where they can go to do something so they just sit there for the duration of their stay.

   Ms Kosky—Laura—who was to give evidence today but could not be here—has given me a
note saying that sometimes, when people are in intensive care, their families panic and rush to
Perth from places like the Kimberleys and the eastern goldfields regions. They can be persuaded
not to come but then they may turn up and there will be no accommodation for them. So the
accommodation issue is not only about patients but also about escorts and families. That is
worthy of some sort of consideration when talking about reviewing the whole patient assisted
travel scheme. The Commonwealth is going to have to give more money. I know we have got a
big surplus but that will not last forever. This needs to be a partnership between the
Commonwealth and the states, doesn’t it? I made the observation in my submission that private
health insurance could get a kick to start including some travel accommodation in their
provisions. If people cannot access special services, what is the point of having the choice of a
specialist. It makes no sense whatsoever. That comment has been made to us time and again: I
will not take out health insurance because there is no point; I have no choice of specialists; I
have to go to the closest specialist service and it is not worth paying that fairly high premium. I
think that the private health insurance sector have a role to play in PATS for the people who
insure with them. It makes good sense.

  Senator ADAMS—It would as far as rural people are concerned. Private health insurance is
one of the things that most rural families will take out, but we cannot actually use it unless we
are in Perth. You cannot use private health insurance at your local hospital. It would therefore
make a lot of sense to have that attached to private health insurance because you use the
insurance when you go to a specialist or go into hospital. If part of that could be transport and
accommodation—especially with long-term radiotherapy—it could help.

   Ms Kosky—Yes, exactly, and for chronic disease management generally. The other thing that
strikes me as inconceivable—partly because my threshold of pain is not high, but it is still fairly

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high—is the idea that when you are in great pain you are expected to go on a 16-hour bus trip.
No-one in a First World country should have to tolerate that. As you discussed with the Cancer
Council, the endurance of patients in the Northern Territory who have to travel for four or five
hours is an issue. And because they are not within the 100-kilometre range—

  Senator ADAMS—It may be 200 kilometres.

  Ms Kosky—Yes, it is pathetic.

   Mr Charlie—I have a further point on the issue of accommodation. Because of a lack of
regional services, people with long-term needs, like renal dialysis patients, may have to reside in
a metropolitan area for two years or more. In most cases these patients will have secured
accommodation but will also have accommodation back home. According to the PATS policy,
negotiations must be held with the patient and with the family in regard to the management of
this. If the client has to live in Perth for a long period of time, they have to tell them what is
going to happen to their accommodation situation back home and how all of that is going to be
managed. That is the policy of PATS, but it is never practised.

   People have come to us and said: ‘We’re only funded for a six months stay here in Perth. After
that we have to find our own way. This is going to really put pressure on me because I have to
pay for my accommodation back home. And after six months I will have to support myself while
I am here in Perth as well.’ When we inquired into that situation, Homes West said, ‘Well, if
somebody talked to us, we might understand the situation.’ And we had the patient on the other
end saying, ‘We didn’t know that.’ So, from a reading of the policy of PATS, they are supposed
to do that; they are supposed to sit with the patients and their family members and discuss the
most appropriate arrangements. Maybe there is allowance for a transfer of emergency
accommodation through Homes West but if there is it is never practised. The clients are not
aware of it. If they are to come down here for a six-month period, Homes West says, ‘If we are
informed, we can charge the client a peppercorn fee while they are having their medical
treatment in Perth.’ Neither the clients nor the health services know that. Homes West did not
even know that clients were coming down here for long-term treatment. There was no
communication in relation to that policy.

  Senator MOORE—Mr Charlie, we have heard about a ‘meet-and-assist scheme’, on which
the government is going to provide some more information on notice. I was very interested in
that and wondered whether you had been involved in working with that. Do you think that it is a
positive advantage?

   Mr Charlie—Yes and no. I was not aware. We have had problems. I have been involved with
the health service for many years and was part of the establishment of the Aboriginal Medical
Services in the Kimberleys. One of our major issues was the transfer of patients; patients were
getting stuck at airports in going to and fro. We considered the option of someone meeting them
at the airport. During all that time, up until the day I was employed by the Health Consumer
Council, I did not know that the Aboriginal hospital liaison service existed or what service it
provided, and nor did the majority of staff of the Aboriginal Medical Services. When I asked
them they said, ‘We have been providing this service for 20 years.’ And I said: ‘For 20 years?
My god, where were you?’ We are still trying to ascertain their actual role: is it to support the
local hospitals with patients or is it to look after the actual patients? They might even have a

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patient who is coming up from a remote area. The hospital liaison services that we are talking
about have to assist about five major hospitals in the metropolitan area—

  Senator MOORE—We are still waiting for the details; it was mentioned that they have not
been provided yet. So it will be interesting to get those, and when we do we will forward them to
you. From the consumer’s point of view, have you been involved in developing or working with
them to see how they work, to give feedback or anything like that?

  Mr Charlie—No.

  Senator MOORE—That leads on to my other question. Ms Kosky, how does your
organisation—in the knowledge you have—work with the government? How does the
government get information, give you feedback, respond—all those kinds of things—so that
your consumer voice is actually part of policy development?

  Ms Kosky—That is the ideal, but the government of course only hear what they want to hear.
So we give them information in a six-monthly report. We highlight to them where we think the
problems are and clearly if there are major problems then we get in touch with them
immediately.

   We were involved in the early stages of the ‘meet-and-greet project’ because we thought it was
an enormously important initiative of WA Country Health Service. It seemed to have a patchy
start. The person seemed to not work nights or weekends. They did not seem to understand that
people get sick every night of the week and that it might be a good idea to have people available
on weekends. It is not a nine-to-five kind of position. But I understand that that has improved. I
think that, as an initiative, it is terrific but it will be interesting to see how it pans out and how it
might improve.

  Senator MOORE—To the best of your knowledge, is it only for Indigenous people?

   Ms Kosky—To the best of my knowledge, yes, it is. I think it should be for a broader range of
people but I can understand why we started off with Aboriginal people who have never been in a
lift in a public hospital or things like that. It is very difficult. If the government think it is a good
idea they will go with it. Earlier this year we raised with them the issue of interpreting services
in public hospitals, including the lack of Aboriginal interpreters, and they have taken that up
with some alacrity. It is unclear whether they had five very bright project officers in the
Department of Health who were a bit underemployed and therefore they thought: ‘We could
review interpreting services and that would make us look really good and put us in a good light,’
or whether they genuinely saw that there were people whose first language was not English. That
is how our feedback goes: immediately, if we think there is a very urgent matter, and in a six-
monthly report, and we meet with the director general every second month for an hour.

  Senator MOORE—You have made a number of specific recommendations based on your
longstanding involvement with consumers.

  Ms Kosky—Yes.



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   Senator MOORE—Having heard the department this morning say that they are constantly
reviewing and looking at processes, I am interested in what process you use when you have an
issue with PATS, as you have pointed out, to have the issue raised and what feedback
mechanism the department has to say: ‘We have considered your concerns about travel subsidies
and the impact on people. This is what we’re going to do and this is why.’

  Ms Kosky—It is, ‘We have noted your concerns,’ or it might be, ‘We’ve noted your concerns
and the matter will be under active consideration.’ They have not watched Yes, Minister for
nothing. They are not into saying: ‘We are really sorry. Tell Mr Brown there was a mistake by
our PATS clerk and it won’t happen again. In fact, we are using his case as a learning experience
for all our PATS officers.’ That is what we would love. I could write the letter I would like to
receive. It would be fantastic if they said: ‘Thanks for those three cases. We think they raise
really important issues. We need to tell our PATS people about the issues you have raised, with
de-identified information, and we hope that this will minimise the likelihood of it happening
again.’ We do not get that.

  Senator MOORE—How do you think the appeal system works?

   Ms Kosky—I think it is not known to people that they can appeal and that makes it really
difficult. We have had some success with appeals where we have gone in and advocated for
people, but a lot of country people do not know that we exist. They do not know that they have
the right to appeal, how to appeal and who to contact regarding an appeal. I think it is another
treasure in the cave that they do not want anyone to know about.

  Senator MOORE—Have you had stock of the new leaflet we saw this morning?

  Ms Kosky—Yes. We contributed to the development of that.

  Senator MOORE—How long has that been around?

  Ms Kosky—From memory, about 12 months.

  Senator MOORE—It sets out the appeal process.

  Ms Kosky—Yes.

  Senator MOORE—We heard about the review of the McKesson process, which is—

  Ms Kosky—Yes, I was interested in the Cancer Council’s observations.

  Senator MOORE—Were you involved in that review?

  Ms Kosky—No.

  Senator MOORE—Have you heard anything from the government about the results of that
review of McKesson?



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  Ms Kosky—No. We were involved in setting up the first health call centre in Perth in the
mid-1990s but we have had very little involvement since then.

   Senator POLLEY—Thank you both for appearing before us. In relation to the forms and the
complexity of them, do you think there is a role for national criteria and outcomes so that we can
judge? From evidence we have had before us this morning and elsewhere, there are no criteria
from which to judge whether PATS is working to the extent that it ought to be.

   Ms Kosky—My only concern is that national forms should be for the maximum benefit of the
patient, not like a minimum standard. We should have some uniformity and some
standardisation but the standard should be a high standard of quality and understanding and it
should be developed in consultation with consumers and carers. It is really important, if we are
going to reform PATS over the next five years—which is my ambition in some ways, to see it
reformed—that at every step of the way there should be consultation with consumers and carers
so that we get the best outcome for all people in rural and remote Australia.

  Senator POLLEY—PATS is supposed to be for the patients but, from some of the evidence
and some of the concerns we have had raised about selection—being able to make a choice, or
your GP recommending a specialist in Perth as opposed to going to a regional centre—there is
no flexibility. Do you agree with that?

   Ms Kosky—Absolutely. At a much more basic level, the forms are very difficult for
Aboriginal people to understand. There are no interpreting services available at regional
hospitals, so they are puzzled by the paper and puzzled by the language—which is not visual and
has no relationship with their lives—as the PATS clerks are puzzled by someone standing in
front of them whose first language is not English. There is a kind of terrible shared
misunderstanding. The whole access to PATS, from the basics of filling out the form, needs to
be more sensitively and culturally worked through.

  Senator POLLEY—Bearing in mind that the priority for that patient and their family is the
health concern that they are confronting, the last thing they want to be worried about is filling
out complicated forms that they do not understand—

  Ms Kosky—Yes, but they may—

  Senator POLLEY—but they have to if they are going to get any subsidy.

  Ms Kosky—Yes, that is right.

  CHAIR—Can I clarify what you think the goal of a PATS scheme should be. You mentioned
that the travel and accommodation subsidies were a joke, a very token representation of the
actual costs that a consumer has to meet. This morning the Western Australian government did
make the point that, if you had a scheme that allowed everybody to travel to get treatment for
some sort of serious illness—say to Perth in the case of Western Australia—you would undercut
the health services in regional centres because people would go past them. They would
inevitably be viewed as less effective than those in Perth, so people would always go to Perth.
What should be the aim of a decent PATS scheme? What proportion of the cost should be
covered? Should it always rely on some contribution from the patient? Should it be a scheme

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that totally covers the cost of patient travel? Should it be a scheme that strictly adheres to
eligibility criteria so that people travel only when they have a medical need to be in Perth, or
whatever centre, as opposed to somewhere nearer? What should the objective be?

  Ms Kosky—I can appreciate that there is a tension between getting specialists to regional
areas and getting people the best care possible. I can appreciate the tension between those two, in
some ways competing, objectives, which the department stated this morning. Our view is that
you have to reframe what PATS is about. I thought I wrote brilliantly about this in my
submission, which I am now going to read. On page 4 I said:

… a reframing of PATS conceptually to a view that PATS is a means of adding value to the health care of rural and remote
patients …

It adds value to their care. It is not just a subsidy; it adds value to their health and health care. I
think it should be based on clinical need and not on capacity to pay.

  CHAIR—If you are based in Karratha or Tom Price and you certainly need to be in Perth
then the scheme should cover your costs in getting to Perth and staying in Perth for as long as
the treatment you require is delivered?

   Ms Kosky—Whether you have an asset test, a means test or whatever, there should be some
copayment based on people’s capacity to pay, and I think there are ways of making those
arrangements. This is what we want; how it is organised is the role of government. But I think
the issue of those who should benefit most benefiting first should absolutely take into account
pregnant young women who need to have someone with them and Aboriginal people. We need
to take some view of the unique characteristics of disadvantaged people in the community and
try to embed a culture of care so that that disadvantage is reduced. That is complicated for
government, which then say, ‘Special pleading for this group; not available to that group,’ but
that might be something they have to wear. I do think there should be a contribution.

  CHAIR—Mr Charlie, do you think there is a role for Aboriginal health services, appropriately
subsidised, to provide staff to play the role of escort to Indigenous people who need to make
those trips, as opposed to expecting a family member—who we are told might be as unfamiliar
with what goes on in Perth as the patient themselves—to play that role? Would that problem be
overcome if there were money available to help provide professional escorts, if you like, to go
with the patient to Perth or wherever?

   Mr Charlie—I agree with you. I definitely believe that would solve the issue because, talking
to the meet-and-greet mob about the types of escorts being sent down with the patients, I learned
that sometimes the escorts are more stressful than anything else in relation to the management of
the patient. The information coming back is that, yes, there should be someone clinically
involved with the patient to escort them, depending on the type of illness the client is coming
down to Perth for. Even in terms of consulting with the doctor, or being able to understand
feedback information, that would be useful. If you just have a family member there who does not
have a basic understanding of anything medical and they get feedback, how are they going to
relate that back to the client? But if you have someone there who has medical knowledge, they
could transfer that information back to the client and then to the family when they return home. I


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agree that it would have a lot of impact on the patient’s care if resources were given to the
Aboriginal medical services and medical staff were involved in escorting patients.

  CHAIR—And if such a person was already working in the health services, they would be
familiar, hopefully, to the patients already, so it would not be a stranger that they were travelling
with.

   Mr Charlie—No, they would already be familiar with the clientele. For instance, one family
was stressing out because they were told that a 70-year-old father living in a remote community
who had to go to Perth did not require an escort because, in the assessment of the PATS clerk,
‘the patient can walk’.

  Senator MOORE—In terms of the interstate stuff, I know that in the north sometimes there is
the view that ‘people from the north go to Darwin and Cairns rather than Perth’, depending on
the process. Western Australia is the only state that separates internal PATS from interstate PATS.
We did not get a chance to ask the government this morning about taking people outside Western
Australia; we ran out of time. There was a case we heard about this morning where they kept
saying, ‘Go to Perth’, but I am pretty sure there are cases where they do not go to Perth but to
Darwin. Are there any other issues about going to Darwin as opposed to going to Perth? In some
cases, I know, even in that central bit, people tend to go to Adelaide because of the big circle of
the central lands. So is there anything in particular that you want to put on record about when
patients do not go to Perth?

  Mr Charlie—If you were to ask people up in the northern part of Australia—in Kununurra,
for example—‘If you had the option, where would you like to receive services?’, they would say
‘Darwin.’

  Senator MOORE—They would actually prefer to go to Darwin rather than to Perth?

  Mr Charlie—Yes.

  Senator MOORE—So if they do say ‘Darwin’, what happens?

  Mr Charlie—It can be arranged internally. PATS can go across because they just transfer—

  Senator MOORE—They just call it something else?

  Mr Charlie—I assisted a client who had been living in the metropolitan area for a long time;
he is from Kununurra, and his family were just going through so many problems that we
arranged, through the PATS thing, to transfer him to the Northern Territory where he could be
closer to his family.

  Senator MOORE—I think we need to get that on record—that people in Western Australia
do go elsewhere. So, through your service’s consumer advice area, you could work with that
patient’s family to help him get to Darwin?

  Mr Charlie—Yes.


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  Senator MOORE—And that is through the Western Australian system, not the Territory
system?

  Mr Charlie—It was through the Western Australian system, yes.

  Senator MOORE—Thank you.

  CHAIR—I think we have got a lot of benefit out of that. Thank you very much for your time
today and for the submission that you provided.

  Ms Kosky—It was a pleasure.

  Mr Charlie—Thank you.




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[12.00 pm]

FYNN, Ms Noreen, Chief Executive Officer, Carers WA

  CHAIR—Welcome, Ms Fynn. Thank you for your submission. I invite you to make a short
opening statement before we ask you some questions.

  Ms Fynn—Carers WA is the peak body in Western Australia for family carers—that is, carers
looking after anybody with a chronic mental illness or a disability and those who are frail
ageing. In our state alone there are roughly 246,000 family carers; across Australia there are
about two and a half million family carers. We are part of the network of carers associations of
which Carers Australia is the nationally funded peak body.

   CHAIR—I will lead off with a question, which I am sure you heard me ask the last witnesses,
about choosing suitable carers to travel with people who are undertaking medical travel. We had
evidence earlier in the day from the Western Australian government suggesting that part of their
problem on occasions was trying to steer people—particularly Indigenous patients—away from
taking family members with them who were as ignorant of what was going to happen and as
potentially unable to cope with the circumstances of perhaps travelling to Perth and experiencing
situations which they had not encountered before and towards getting people who would add
value in advising patients about what was happening to them and helping them when they got
there to navigate through travel in taxis and things like that. Do you feel that there is a need for
an investment in the quality of escorts who accompany patients on trips like this? For example, I
made a suggestion to Mr Charlie about having people in the health service who were trained to
do that on a professional basis for patients who had to travel.

  Ms Fynn—I will answer on two levels. One, we believe that the eligibility criteria should be
broadened nationally so that not just the medical and physical needs of the patients are taken into
account but also the emotional support needs. It is hard enough facing treatment for illnesses and
disability on your own, let alone having the family carer staying at home and worrying. I have an
example of a couple that we knew in Carnarvon. Some years back she had a chronic spinal
condition, and PATS agreed to pay for her to come down to Perth by bus. They assessed that she
was able to travel by bus. She was almost doubled over with pain, she was facing a long bus trip
and she had to leave her husband behind.

  Senator MOORE—I do not know the geography well.

  Ms Fynn—I think it is about a five-hour bus trip, but I could well be wrong. Senator Adams,
you might know. How far is it from Carnarvon to Perth?

  Senator ADAMS—Carnarvon to Perth would probably be five—

  Ms Fynn—No, it would be more than five hours.

  Senator ADAMS—I think that it would be five hours to Geraldton, so in a bus it would
probably be 10 hours to Perth.

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   Ms Fynn—Yes. I said five and then thought I was very wrong. It is a very long trip. He was
significantly concerned about her ability to get off the bus at the other end and about how she
was going to cope on her own. The carer was very distressed to the point that he was very unwell
himself, and we had to provide quite a lot of counselling for him to cope in the following
months.

   In our additional information we have given a number of other cases. We believe that there is
always a benefit in the family carer having the option to come down with the person. I think that
also needs to take into account the recognition that health care is now increasingly provided at
home and in the community. The time spent in hospital is often very short. You may be down
here for quite a period of time for treatment but the average hospitalisation period is, I think, two
to five days now. A transfer of knowledge is needed to the carer—the carer needs to be alongside
the person because they truly are partners in care. They need to be able to ask those questions
and receive information about medication, treatment, side effects and the physical care needs so
that when they return home they are in a position to provide the care.

   In regard to Aboriginal carers, we included a quote from an Aboriginal carer in our
submission. At his request we attached to our additional information a copy of his letter and the
letter that he received from the minister for health. In Michael’s case, his wife has renal failure,
high blood pressure, thyroid trouble and memory loss. Also, she cannot read or write. Her doctor
only sees her once every three months or so. They have had the meet-and-greet service, which
we think is an excellent service and an excellent initiative. But we do not believe that it should
replace the family carer; it should be in addition to the family carer. When she goes back home,
he will be the one who will have to provide that care and he will need that knowledge. But some
families could also do with that additional professional assistance. I do not believe it should
replace the family carer.

  Senator ADAMS—With regard to carers, you may have heard us speaking before about the
Crawford Lodge effort. In one of your submissions I believe the same thing was mentioned.
Have you done any work with the rules about a carer or an escort being charged the full rate
when the patient they are with is in hospital? Have you had any dealings with that?

  Ms Fynn—We have received this comment from almost all of the regions in Western
Australia. Firstly, we have been told that once the patient is hospitalised the costs of the family
carer will not be paid. As far as accommodation is concerned, there are concerns about the
inadequacy of the rate that is paid. The fact that there is no payment for the carer when the
patient is hospitalised is also a matter of concern. This is a significant financial disadvantage.
There are also questions about the appropriateness and suitability of accommodation. I have
heard comments today about accommodation such as Jewell House. Crawford Lodge is a
wonderful facility.

  Senator ADAMS—If you can get in.

   Ms Fynn—That is right. The Leukaemia Foundation accommodation has shared facilities.
You can handle shared facilities when you are amongst others who are in similar situations. The
only low-cost alternatives in Perth are places like Beatty Lodge, Jewell House and the YHA.
Those all have shared facilities but most of the other people staying there are backpackers,
students, travellers and people who fly in and fly out. Both the shared facilities and the premises

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have no disability access. The bathrooms do not have handles and there is nothing that is
appropriate for disability purposes. They are therefore very difficult places for people to remain
for the long term when they are faced with illness and disability. There are other accommodation
options. We have attached to our submission the information sheets from the government’s
website. You can see the significant costs of the other accommodation options.

  Senator ADAMS—For people with cancer, given their immune systems and the drugs they
are taking, shared accommodation is not very suitable.

   Ms Fynn—No, it is not, and there are no cooking facilities in some of these places. Beatty
Lodge does have cooking facilities. They have a communal kitchen. Jewell House does not; they
have a microwave. Again, when you are having treatment and you are ill, you often have dietary
limitations, so that adds another difficulty. It is not only illness, it is also disability. For instance,
in Derby there is a family with a child with cerebral palsy who has to come down to Princess
Margaret for treatment, and another such family with a member who has muscular dystrophy. At
the airport there is no ability to board if you have a wheelchair. Our understanding of that is that
because it is a three-year contract an exemption has been given to the airline in terms of
wheelchair hoist facility. I have not verified this, but this is what we have been advised. The net
result for the families concerned is that they have to drive from Derby to Broome—a 200-
kilometre trip one way—in order to catch the plane down to Perth. They have to store their car
while they are away. The mileage rate is 13c to 15c a kilometre. So there are significant
disadvantages and costs.

  Senator MOORE—I have checked with the little leaflet, which talks about when you can get
escorts. If you are receiving carer’s pension under Centrelink, does that give you any added right
under the system?

  Ms Fynn—As a pensioner?

  Senator MOORE—If I am a paid carer for my partner or for my child and I am getting
carer’s allowance, does that give me automatic access to the PAT Scheme, as a carer?

  Ms Fynn—No, it does not. It is only if they judge that you medically or physically need
assistance.

   Senator MOORE—I can see the guideline here. If you are looking at the standardisation of
process, if you had met the carer’s responsibilities in one area of government, it might be useful
if that carried across.

  Ms Fynn—If you are a minor then they will, but where there are young children that brings
up the complexities. If you have other young children they are not paid for. I understand that
schemes have to have limits, but there is significant financial stress on families. Certainly the
cases we have quoted are from family carers who have been told that medically they are not
required.

   Senator MOORE—How are your issues raised with the government? Obviously, this is an
issue where the carers association has been talking with your members and the people who turn


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to you for assistance. How then are you able to talk to the government and point out your
concerns?

  Ms Fynn—We do reporting to government, obviously. We include it in meetings with
government, in meetings with members of parliament and we obviously encourage family
members themselves to be active in their own advocacy, at a local level and through the other
systems.

  Senator MOORE—Have you had success?

   Ms Fynn—There is limited success sometimes, but there is much further to go. We are
pleased that Western Australia was the first state in Australia to have a carer’s recognition act.
Family carers have traditionally been very much the invisible, unseen part. I think nationally and
internationally there is a growing awareness of the importance and place in the system of the
family carer but also, importantly, the very real health impacts on the family carers themselves.
That too comes at a cost to the system if we forget that.

  Senator MOORE—In terms of advocacy around the PATS in particular, has your
organisation acted as an advocate to help someone through the appeals process, as set out in this
groovy little leaflet?

  Ms Fynn—Certainly in cases like Mr Weir, who came to us before this. We have actually
taken up his case with the health department. I cannot say that we have success in resolving all
of them.

  Senator MOORE—But the community does use you as an advocate in that sense?

  Ms Fynn—Yes, they do. And increasingly, where it is seen as a carers issue, which this one
was, we will advocate. We obviously have links with the Health Consumers Council, who will
advocate from the consumer perspective.

  Senator MOORE—For my own information—I have been to Sir Charles Gairdner—where is
Osborne Park?

  Ms Fynn—It is also north metropolitan.

  Senator MOORE—And this is directly from the department’s website?

  Ms Fynn—That is directly from the department’s website.

   Senator MOORE—So when people are looking who do not know the city, this is one of the
things they could be given to be given a hand.

  Ms Fynn—That is correct.

  Senator POLLEY—I asked all the witnesses, I think, today whether or not there needs to be
a simplification of the application for PATS funding and also of the appeals process. Have you
got a view on those?

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   Ms Fynn—We would certainly like to see it more simplified and streamlined and also more
flexibility in the system, because it is not able to be responsive to conditions that can just occur. I
remember back some 10 years where, certainly here, the social worker at the hospital would
have had the ability to actually approve applications where a person might have forgotten to
complete the paperwork or come through and not completed the paperwork. As for the current
system, there are certainly complexities. What families say to us sometimes is that they just walk
away. It is just too hard. They have got enough to cope with. They are often in country Western
Australia. They have actually got to travel to the practitioner in the first place, and that comes at
a cost and a time factor. The barriers can be considerable. If we can simplify the process and
build in greater flexibility, we will have done a great service.

  Senator POLLEY—Do we need to have a national profile on PATS and perhaps look at a
national outcomes structure? Would that be beneficial? Although we have to localise it as well,
because obviously Tasmania and Western Australia are different to, say, New South Wales or the
ACT.

  Ms Fynn—Certainly national guidelines that can be applied would be beneficial, and then the
ability to build in some of that local flexibility. But, if the decision making is entirely at the local
level and if it is budget driven, even where people will not give the budget as the reason for that,
the decision making can be far too localised in a way that can adversely impact.

   Senator POLLEY—But with all these schemes budget is a two-edged sword because,
although there is only a small pot of money to go around with this scheme, the long-term
benefits of giving more flexibility in terms of carers and access to their choice of specialist can
in the longer term save governments a lot of money because there are social and psychological
benefits of having their carer travel with them. It is not always just a case of whether or not they
need that physical assistance, but they need that support.

  Ms Fynn—Very much so. They need the emotional and social support. But it is also important
for the carer to get that knowledge as well.

  Senator POLLEY—Exactly, in terms of keeping up with the information and the outcomes
of those specialists visits and things.

  Senator MOORE—Does your organisation have any anecdotal evidence that there is a
budget drive to the way this scheme is implemented?

 Ms Fynn—Anecdotally people will say, ‘I understand that they’ve got a budget they’re
working to,’ but I certainly do not have anything that could verify that.

   Senator MOORE—The people who come to you do have a sense that perhaps budget, cost,
is one of the driving factors?

  Ms Fynn—Yes.

  Senator ADAMS—Do you market PATS to your people? This is the new booklet they have
put out about PATS. As an organisation do you let your members know that PATS is available
and how to go about accessing it? Do you have any process that you follow?

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   Ms Fynn—What we tend to do is not directly market it. We would rely on the health system
to provide that information to the person—unless through our work with carers it becomes an
issue. Through the services and supports that we provide to carers and through our regional
visits—and we have a regular program of going out to rural and remote Western Australia to
provide education and workshops and try to consult with families on the ground—what we do is
try to identify those issues. Once we have identified that there is a lack of knowledge or where
something has come through as an issue—and PATS did in a lot of the areas last year—then we
will seek to distribute more of the information as well. We may use our newsletter as a medium
for doing that. We have e-bulletins that we use. And obviously word of mouth through other
family members can sometimes be the most powerful medium.

  Senator ADAMS—Do you have examples of people who have travelled to Perth and been out
of pocket and who have not realised that there was an assisted travel scheme available?

  Ms Fynn—We certainly do hear that sometimes, yes.

  Senator ADAMS—This is a new book that the department has put out. They have given us a
copy.

  Ms Fynn—I have not seen it before, so it is one that I will get hold of.

 Senator ADAMS—It was published by the Department of Health and Ageing in 2007. It
would be rather good for your organisation to have that.

  Ms Fynn—It will be, and I will be getting some copies of it.

  CHAIR—I thank you very much, Ms Fynn, for your time today and for the submission that
Carers WA provided to the committee.

                       Proceedings suspended from 12.21 pm to 13.35 pm




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COLLET, Mrs Annie, Welfare Officer, Sir Charles Gairdner Hospital

HILLENBRAND, Mrs Janice Gail, Welfare Officer, Sir Charles Gairdner Hospital

MACE, Ms Jennifer, Acting Head, Social Work Department, Princes Margaret Hospital
for Children

PATTERSON, Mrs Sharon, Senior Welfare Officer, Social Work Department, Princes
Margaret Hospital for Children

  ACTING CHAIR (Senator Moore)—Welcome. We have submissions from both of your
organisations. Would you like to make a short opening statement?

   Ms Mace—We are here representing Princes Margaret Hospital for Children. We are the
tertiary centre for health care for children and adolescents across the whole of the state. This is a
big state, so we cover a wide area. The social work department in general deals with the interface
between a child’s illness, disability or chronic health condition and the family’s ability to cope
with that diagnosis of a disability, chronic health condition or injury. Our work with them can be
around emotional issues and practical issues. Sharon, who is our welfare assistant, deals with a
lot of the practical issues that can complicate a family’s ability to cope with the diagnosis. One
large part of that is PATS. We joke that she is almost our PATS officer because there is a lot of
work around PATS that ends up as part of Sharon’s workload for the day. Years ago when I
started at PMH we had PATS clerks in the hospital who did a lot of this work and then those
positions were removed and devolved back out into the country. We find that Sharon gets
involved with a lot of families. We try to put a lot of it back to ward clerks for the simple and
straight forward cases of getting families back home, but Sharon gets involved in the difficult
cases involving vulnerable families with particular issues that make it more complicated for
them. So she deals with all the areas. The majority of her dealings with the PATS clerks are of a
positive nature and they are very helpful at making things go smoothly. However there are cases
where that is not the case. I suppose they are the ones that we take note of.

  From our hospital’s point of view—if I can pull out three points from our submission and put
them on the table—in the paediatric setting we are getting more 16-year-old mothers and young
mothers who present with their children. They are sent down as escorts on their own but
sometimes they are not able to manage that scenario or understand about informed consent and
making decisions about care, education or a number of other things. Sometimes there is a need
for us to have a second person present, which does not fit under the guidelines. My point is about
having a second escorts or other people present.

  Another key area for us, which is also about second escorts, is about children with life-
threatening conditions or where children are expected to die. The guidelines for that are also for
only one parent being able to travel to Perth. From our point of view, certainly where a child’s
death is imminent, that is a crucial event that both parents need to be there for. Once again, we
cannot always get PATS approval for a second parent to be present.

  The other aspect to that is that there are a number of chronic conditions where parent
education is crucial. For children with diabetes, cystic fibrosis and other conditions like that, we
need to educate parents to do the care. In this world of growing social complexity, quite often we

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are dealing with blended families and separated parents, so you cannot always rely on one parent
being educated and then going home to the biological father of the child and educating him. So
sometimes having the flexibility to get the second parent down is crucial for us. They are a
couple of the key points for us that are a little bit unique. I think a lot of the other issues we
raised are across the board—everybody has probably experienced them.

  ACTING CHAIR—Mrs Patterson, did you want to add anything?

  Mrs Patterson—No. I have gone through my checklist and she has done quite well!

  Mrs Hillenbrand—Annie, as well as being a welfare officer, is also our accommodation
officer. As with what Jenny was talking about, a lot of this has now come back on us. We have
no PATS officer in the hospital anymore and we end up having to wear the extra work. Because
of the types of chronic illnesses that the hospital deals with—others are for children, but ours are
for adults with chronic illnesses and we are the centre for cancer—most of our patients will be
dialysis patients, long-term patients or patients with cancer.

  ACTING CHAIR—Even in the hostel they referred to?

  Mrs Hillenbrand—Crawford Lodge. It is used, but it is never enough anyhow. The biggest
problem that we seem to be having is that people have been diagnosed with cancer when they
come down and they are not always granted a carer to come with them. It is quite essential. A
person does need that. If you have ever had to go through radiotherapy or chemotherapy, you
know it is not a pleasant thing to have to deal with and you do need family support. So this has
become, I would say, one of our biggest issues. Don’t you think so, Annie?

  Mrs Collet—Yes, sure.

   Mrs Hillenbrand—We can go through a few other things that we have talked of, if you want
to ask about different things. The ICU, the chronic side, is a big issue.

   Mrs Collet—People very often come down with the Royal Flying Doctor Service from
anywhere up north—really far away—and they may have a relative put on the plane with them,
but they have not been told that their relative is not covered under PATS. Their accommodation
is not covered. So they land on our doorstep and very often they do not have money. They might
be Indigenous people. We are left to hold the baby and there is no provision being made from
where they came from.

  Senator MOORE—Is this in emergency situations?

  Mrs Collet—We get quite a few emergency situations to the ICU. They could be accidents or
very bad illnesses that need the ICU.

  Senator ADAMS—Speaking of accommodation—because I see we have Ronald McDonald
House at PMH and Crawford Lodge—as far as Ronald McDonald is concerned, is there enough
accommodation there for the people who need it?



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  Mrs Patterson—Ronald McDonald is basically made for families with children with
disabilities, but it tends to have kids with cancer. Unfortunately, we cannot put other families in
there if these children are undergoing treatment at the time because most of the time they are
neutropoenic, which means that they could be affected by other siblings going to the house. That
means we have to try and farm families out into other accommodation areas within the local
area, which is mission impossible.

  Ms Mace—It is not big enough.

  Mrs Hillenbrand—It is the same with Crawford.

  Mrs Collet—Crawford is always booked out, and then it is up to us to find alternative
accommodation. But because of the cost it is nearly impossible—mission impossible.

  Mrs Hillenbrand—Because of what PATS allow, it is not adjusted to the CPI. We try to get
outside accommodation for people but they cannot afford it. PATS will pay up to $35. Even the
hotel up the road charges over $100 a night. So PATS covers $35 and that family is expected to
cover the rest.

  Mrs Collet—If they do not have a healthcare card, they do not get anything for the first three
nights either. I think that is inadequate.

  Senator ADAMS—I know of a situation with Crawford Lodge where someone was being
admitted to hospital and their escort had to pay full fee.

  Mrs Collet—That is the biggest problem.

  Senator ADAMS—That is very cruel. If somebody has an adverse reaction to their treatment
and ends up in hospital, their carer is probably working twice as hard trying to help them.

   Mrs Hillenbrand—Carers do need to be there. People need them. You cannot be penalised
because you live in the country. It is unfortunate that you have to come to Perth. It is scary
enough, with a diagnosis that might not be very pleasant. It is so important to have a family
member or someone you know with you when you are completely outside your familiar
environment. But it is becoming more difficult to get carers accepted. We have a constant
struggle with that.

  Senator ADAMS—Who are you dealing with? We will have to take the two hospitals
separately. Because your social work department is dealing with patient assisted travel now, do
you deal directly with the department?

  Mrs Hillenbrand—With the individual PATS clerk or the South West PATS.

  Senator ADAMS—We will talk about that in a minute.

  Ms Mace—Another point is that, if we have a difference of opinion with the local PATS clerk,
there is no means for—and ‘arbitration’ is a strong word—resolution. We are basically told:
‘That’s the rule’.

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  Senator POLLEY—We were told this morning that there is a process whereby you can go to
the regional manager; if that does not work, you can go to the head; and, if that does not work,
you can appeal to the minister. Is that not the reality?

  Mrs Hillenbrand—Or forget it and go home.

  Mrs Collet—But in the meantime these people are in Perth, they do not have money and they
are sick.

  Mrs Hillenbrand—They are extremely vulnerable.

  Mrs Patterson—If an answer is needed that afternoon, they might say, ‘Just pass it through,
but can you get these three documents and your bus pass?’ But, as you have stated before,
consequently it is one week later and nothing has happened.

  Senator POLLEY—And this is all going on while you are in pain and you may or may not
have your carer with you.

  Mrs Hillenbrand—Exactly right.

  Senator ADAMS—You mentioned in your submission that you are having problems with
escorts for children.

   Ms Mace—We are lucky in that a child automatically gets an escort. In that situation, we are
lucky compared with others. However, sometimes we require more than one escort. You have to
look at it from a family point of view. You cannot minimise and exclude fathers. It is usually the
mothers who come down with the children, because they are usually the primary carer, but
fathers get excluded from the process, which is extremely difficult.

  Mrs Hillenbrand—It could be essential to have the mother and the father around for that
child to become well—just to have that family unit.

  Senator ADAMS—Do you have any evidence of people, particularly children, not being able
to access the treatment they need because of a lack of funding and not being able to access
PATS?

  Ms Mace—There is certainly anecdotal evidence. You will have people who say, ‘If I cannot
get it, I’m not coming,’ or, ‘If you can’t help me, I’m not coming down.’ I suppose that is when
we have to depend on their reason for coming to determine the urgency of the need to get them
there.

   Mrs Patterson—If a parent has conflict with a PATS clerk within that level and they start
saying, ‘We won’t come down,’ that is when we become involved and advocate to get the child
here and try to do the leg work in between. But it takes quite a few hours to put that in place if
there has been conflict or they have not conformed to whatever piece of paper they had to bring
in or they did not see the doctor properly beforehand. In an emergency situation, some families
are referred straight down to us, they see our paediatrician and then go back, but Princess
Margaret may say, We want you back down again.’ The process with the local doctor is quite

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difficult at times, if they are a locum or if they are travelling, or if they do not conform to doing
the yellow PATS in between.

  Senator ADAMS—So the patient just misses out?

  Mrs Patterson—Yes.

  Mrs Hillenbrand—With a lot of that, I also find that perhaps the doctor referring does not
have enough knowledge about PATS. It is supposed to be initiated on a form by him as a referral.
More forms are brought down and a lot of people just turn up and ask: ‘What do I do?’ They do
not know anything about it. So I think there is a lack of education right through to GPs. It is not
so much with the hospitals but more with the GPs.

  Senator POLLEY—Are GPs the people who ought to be initiating PATS?

  Mrs Hillenbrand—They have to initiate it.

  Senator POLLEY—Yes, but should that remain with them or should we be looking at
another mechanism?

   Mrs Hillenbrand—I had an idea that perhaps there could be a particular type of nurse who
would work in that surgery who would deal solely with PATS. They would be able to put that in
place and make sure that the doctor does follow through with the paperwork. Annie, what you do
think we get percentage wise? Is it a third of the people whom we get?

   Mrs Collet—Yes. They come down and say, ‘The doctor told me to come down straight
away.’ I had one person last week. The doctor did not give him a referral for PATS and he was
stuck here. Now he has to stay here for accommodation, so I have to advocate for him to get his
accommodation while he is here paid for. He had to have his leg amputated, so he is going to be
here for quite some time. It is not just one or two nights. He needs to stay here for rehab and the
fitting of his limb.

   Senator ADAMS—We have been told today that the PATS budget does not exist as a PATS
budget; it is part of a hospital budget. Knowing how small rural hospitals have had their
allowances cut back, I am wondering how they deal with it. There is that protection, and it is a
bit of chain reaction, with the PATS clerk being told, ‘You cannot go over whatever amount or
do this or do that,’ and the GP being told, ‘Do not do anything with PATS unless it is a heathcare
card holder.’ That then causes problems in the community. Do have any evidence of that?

  Mrs Patterson—I have a couple of pieces of evidence. At Newman Hospital the PATS clerk
said, ‘No, the clerk cannot go down.’ I said: ‘It is not your decision. It is the GP’s decision.’ She
said, ‘He will do what I tell him to.’

  Mrs Hillenbrand—We do find inconsistencies with the PATS clerks in all the different
hospitals. Some of them do, as you put it, Sharon, have a little power journey on it.

  Mrs Collet—It is like it is coming out of their own pocket. They say, ‘You cannot have it
because of that.’

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   Ms Mace—And decisions are purely based on dollars. When you are asking them to be
flexible around something, it will purely come down to a dollar decision. So, as to the human
connection or the exceptional circumstances that they might be under, they say, ‘No.’ It is about
the dollars.

   Mrs Hillenbrand—It is not about what is wrong with the person, what their need is in
treatment and what is available for them. It all goes back to the dollar. It is about what it is going
to cost.

  Ms Mace—We acknowledge that you cannot have a total budget blow-out. Clearly, you
cannot have open slather.

  Senator POLLEY—You cannot open the floodgates.

  Ms Mace—Yes, and I acknowledge that. However, we are responsible with resources. We do
not ask for it if we have not assessed that it is needed.

   CHAIR—The Western Australian government said to us this morning that there was a toss-up
between flexibility and certainty, and that they wanted the system to have a bit of flexibility in it
so that they could deal with particular cases. That means that people might get different
outcomes in the same or similar circumstances. Do you think that is a fair view? Is it better to
have rigid rules that say: ‘You are 101 kilometres away; that is it; nothing for you,’ or is it better
to have that flexibility with the danger that there will be variable outcomes?

  Mrs Hillenbrand—If it has some sort of control—such as what we are talking about: what
we do—I do not think it would be abused. We can assess what the situation would be and what
the need is for each individual and to put that in place. That is what we try and do now. We try
and advocate for them. A patient needs a carer or needs certain things done, and we can go out
there and do that. It would be a similar situation with that.

  Ms Mace—The distance issue is significant in that sort of little hinterland before you are due
for your 100 kilometres. With the expanding suburbia in Perth now and the people who live in
the Peel area, it is fine if you have cancer or whichever one they will pay for at the moment—

  Mrs Patterson—Any radiology or renal—

  Ms Mace—That is pretty well it. But if you have anything else and are travelling up they will
not.

  Mrs Patterson—Although the Peel is fairly flexible in Northam. They do not even get into
the argument.

  Mrs Collet—Yes, they have got their own transport for Peel from Mandurah.

  Mrs Hillenbrand—But for people who live in York who just fall under that 100 and who are
going to have radiotherapy—they have got six weeks of radiotherapy, coming down and going
back every day—how are they going to face that? The expectation is that they have to and they
will give them a measly $20 a day to drive backwards and forwards.

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  Mrs Collet—But they will not pay the $20 towards accommodation costs. I have tried that in
the past. You pay them $20 a day for the travel. What about $20 towards the accommodation
costs? No, it is purely for travel.

  Mrs Hillenbrand—It is quite rigid.

  CHAIR—How do they regulate that? Do you have to produce the receipts?

  Mrs Collet—Yes.

  Senator ADAMS—But there is no option with it; it is the only place that you can come for
radiotherapy.

  Mrs Hillenbrand—And transport generally is just so difficult right across. There is very little
voluntary stuff left in shires et cetera now.

   Senator ADAMS—I was going to ask you about that. I know PMH originally had patient
transport to take them back to wherever they go if they got stuck. Do you still do that?

  Ms Mace—We still have patient transport, but not back to the country, no.

   Mrs Patterson—There is a system in the wheat belt called ‘win’ something or other, but that
is not ours. They have been usable a few times, if they have got anything coming down this way.

  Senator ADAMS—Do you use the Flying Doctor Service, if they are empty on return?

  Ms Mace—Yes, we still use them, but they are usually so full and you have to wait. So you
are waiting in Perth and usually holding up the hospital bed waiting for it.

   Senator ADAMS—I want to ask questions on the McKesson and the south-west. How do you
find that service? We have had a lot of evidence about it, so I would like to hear about it from the
professional end now.

  Ms Mace—Nothing said says a lot.

  Mrs Hillenbrand—It is horrific. My thoughts are: ‘Oh God, they come from the south-west.
Oh no! That’s what I’ve got to battle with.’ They are so rigid. There are no ifs, buts or what-
have-yous with them; that is it, they do not want to hear about it. They will hang up and that is it.
There is nothing at all; it is not a good service. The individual ones are fine with the north-west,
they are a bit better, but since they put that south-west one in place, it is all run over the phone.
There is no flexibility whatsoever.

 Senator MOORE—Were either of your hospitals involved in the recent review of the
McKesson service?

  Ms Mace—No.



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  Mrs Hillenbrand—No.

   Senator MOORE—My understanding is—and I can say this with authority because I am not
from the state—that there has been a recent review of that service, and we had evidence this
morning to say it was highly positive.

  Ms Mace—Did they ask the parents?

  Senator ADAMS—And yet I have got a GP down there who says, ‘I believe the present
system penalises rural patients.’ That is his comment at the end.

  Mrs Hillenbrand—That is very interesting. Someone needs to have some hands-on
experience, or to be a person who has to have the health care themselves and be a patient. They
might have a different experience then.

   Mrs Patterson—Mind you, there was conflict between Princess Margaret and that agency.
We have had quite a few discussions over a period of time and we have ironed out a few in
relation to paediatric medical treatment. It is not as bad as when they first started, I must admit.
We cannot give them all of the wrong ticks.

   Senator MOORE—I am interested in finding out about the interaction with the government,
who run the scheme. There have been a number of reviews of the scheme, which were talked
about this morning in evidence. What opportunity have your areas had to let the government
know about the things you are sharing with us now? Both of your submissions talked about the
significant amount of work that has come to the social work units of both of your hospitals
working in this area, so it would seem that you would have a degree of expertise as well as the
stories you have told us in your submissions. I am interested to know what the Western Australia
department has done to learn about this and to see whether they can work with you.

   Ms Mace—We have never been formally approached for any feedback. If we have had
particular issues then we have either written to them saying, ‘We’ve got a problem; can we sort
it?’ or we have set up a meeting with them, but we have never been formally approached for any
formal feedback on or review of the service.

   Senator MOORE—I know that you all work in the social work area. One issue that has come
up is the decision-making process. It is clearly expected to be a medical decision and the core
decision maker is the GP. We have had evidence that perhaps GPs are too close to their patients
or are bullied by their patients into demanding services or referrals that the GPs are incapable of
refusing, and that it is therefore important to have an objective decision-making process that
looks at the GPs process to ensure that the GP is not left in the vulnerable position of being
bullied or being too close to the patient to explain a negative reaction. From your professional
background, where you have seen behaviours over many years, would you care to comment on
that statement? Chair, is that a fair assessment? I do not want to put words in people’s mouths.

  CHAIR—Yes, it is fair.

  Mrs Patterson—I am impressed that we have GPs who have been in a position in town long
enough these days to warrant being that close to a lot of our families.

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  Ms Mace—Or to have a GP in town to start with!

  Mrs Hillenbrand—Yes, exactly.

   Mrs Patterson—A lot of times, especially in our setting, if they come through to us we say,
‘Look, there are consultants within your realm that could do the same thing,’ and it is explained
to them. When they get on the phone he is saying, ‘They won’t let me come down here; they
won’t let me do this.’ I think if you can explain that they will be doing the same treatment and
that Princess Margaret will be supervising the treatment et cetera they are a bit more settled. I
think the explanation to a lot of people is, ‘No, you can’t go.’

  Senator MOORE—So it is the way it is explained?

  Mrs Patterson—I think so.

  Mrs Hillenbrand—Yes, I agree with Sharon.

  Mrs Collet—Second opinions come to mind. People have been denied second opinions. There
might be just one specialist available in that particular area, they are not very happy with the
specialist, they ask for a second opinion and the GP says: ‘No, there is one available here who
will give the same treatment. You cannot have a second opinion and PATS will not pay for it.’

  Mrs Hillenbrand—It is your right to have that.

  Senator POLLEY—It is your right to have a second opinion, and my first-hand experience is
that it is essential that you get a second opinion.

  Mrs Hillenbrand—Country GPs do not always have the expertise to diagnose a patient and
they can misdiagnose.

  Senator MOORE—The department also made it very clear this morning that they are doing a
balancing act with workforce shortages. There was a particular concern that, with the small
number of professionals who are able to be in geographical locations outside the city, everybody
will want to come to Perth. They were concerned that if you were building up a case to put
medical services in one area—and I will not say a placename because I will get the name wrong
for sure—and everybody wanted to come to Perth you would lose care availability at the
regional place.

 Ms Mace—We would lose some expertise, too, if they were not seeing them on a daily basis.
You cannot keep the expertise up.

  Senator MOORE—You are trying to get a general surgeon to a place but everyone says, ‘I
want to go to Perth.’

  Ms Mace—Part of it, too, is that visiting services vary in how often they visit those areas.
Some visits are monthly and some might be more frequent. I think the timing is important
sometimes. People have to wait a long while to see a visiting specialist.


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   Senator POLLEY—When you discuss the issue of PATS funding and that it is all about
money, in the long term it is a two-edged sword, because you can save money if you give people
access to their specialist of choice—the one they believe will best suit their condition. So I
dispute what the department said about money, although I do understand the balancing act of
trying to juggle a health budget.

   In terms of the information that is required in the forms, do you think that the process should
be done at a national level so that there is uniformity? I have heard criticism about moving from
one state to another. There are a whole range of services that are supposed to be provided by
state and federal governments such that people will shift states and regions to try and access
better services. Do you have any comments from a practical point of view?

 Ms Mace—I have nothing to inform that. But it is a big decision to up and relocate to South
Australia or wherever.

  Senator POLLEY—But if they think they can get better access to health services, they do it.

  Ms Mace—I would not be able to comment.

   Senator POLLEY—We have had evidence today that the PATS forms are complicated,
bearing in mind that people and their families are going through, in some cases, very traumatic
experiences if they have been diagnosed with cancer or other serious illnesses. They have to fill
out those forms and there can be barriers because of language. Does there need to be some
streamlining?

   Mrs Hillenbrand—There could be. There is one question in there where they ask about
whether a carer is necessary. If it is not filled in explicitly in the right way, they will deny it. That
to me is not very fair. A doctor is saying, ‘Yes, this person does need a carer.’ Shouldn’t that be
enough? Then he has to write exactly why they need the carer.

   Senator POLLEY—So much of that then revolves around the treating GP initially, not
necessarily whether he believes it is justified but whether he has completed the form. It is a bit
like putting in a submission for funding. Those people and organisations that are proficient at
submissions get more money than those smaller organisations that are struggling. That is why I
am asking whether it should rest with a GP or should there be other people who are designated
the responsibility to complete these forms so that you do get that uniformity?

  Mrs Hillenbrand—There are two parts to the form. When they bring their blue form, the
doctor here has to state that a carer is needed. He must also state why.

  Senator MOORE—So you need two lots of signatures—your GP and your specialist both
have to say the same thing?

  Mrs Hillenbrand—Yes.

  Senator POLLEY—So the specialist could say, ‘Yes you do,’ from a psychological point of
view, but your GP could say, ‘She’ll be all right, she just has to get on with it.’


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  Mrs Hillenbrand—That is where we have a problem, because then you have that sort of
conflict. A person may come up to the hospital with an initial diagnosis and then it turns into
something horrific. Then they need the family to come for that support and the answer is ‘No,
we can’t grant you that. It wasn’t on the original form.’ So there is a lot of mistreatment, I would
say, in that sense.

  Senator POLLEY—So sometimes you would say there is an oversight of the human
component in this process?

  Mrs Hillenbrand—Yes. Dollars are important but they should not be the only factor.
Indigenous people are the victims a lot of the time as far as caring goes. They are not designated
to bring a carer. I know that it can sometimes get out of control in that they might want the
whole family there, but it can be important to have one carer, someone to keep an eye on them. I
have an example of an Indigenous chap who came from the bush. It was set up that he would fly
down and when he got to the airport he said, ‘What do I do now?’ Nothing was explained to him
so that he understood it. He came on his own with no-one to support him; hence at the airport he
disappeared for six weeks.

  Senator MOORE—In medical terms was he a ‘no show’ at the hospital?

  Mrs Hillenbrand—It would have been a DNA. They finally found him in a park. He had
renal failure, he had an ulcer on his spine and he had pneumonia.

  Senator MOORE—In Perth?

  Mrs Hillenbrand—Yes. He was then brought to hospital, put into rehab for a long time and
he is now a quadriplegic through that. That is one case. But that is where the support person is
necessary.

  Ms Mace—I think Indigenous issues are a whole other area.

   Senator POLLEY—Compare putting any one of us who is in severe pain and looking for
treatment in the middle of Japan without speaking the language.

  Mrs Hillenbrand—It is exactly the same thing.

  Senator POLLEY—You have to try to find your way to the hospital.

  Mrs Hillenbrand—That is a perfect example.

  Senator POLLEY—Thank you very much.

   CHAIR—The Princess Margaret Hospital submission mentions the case of two PATS
jurisdictions providing input for two children who are from one family and who are living at the
same residence. How did that situation come about?

  Mrs Patterson—The person who wrote that bit is not here, unfortunately.


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  CHAIR—This is under terms of reference C. You can take that question on notice, if you like,
and explain what happened there. I assume that the children had different conditions and that
they needed to be dealt under a different range of services. That would not be a very common
problem, I would assume.

   Ms Mace—No. I am sorry, I do not know the detail of that.

  CHAIR—This morning, I asked the department about the request for the PATS pamphlet to
be provided. They looked very shamefaced when I asked the question. So I assume you are
going to get your pamphlets very soon.

   Senator ADAMS—We have some here.

   Mrs Collet—We have not got those.

   Senator ADAMS—These are from 2007.

  CHAIR—The Sir Charles Gairdner submission mentions that when patients come in on the
Royal Flying Doctor Service:

... PATS is granted only for carers/relatives accommodation whilst the patient is in ICU, but when the patient is transferred
to ward accommodation assistance is no longer provided.

You can see, superficially, a reason for that. You might argue that, while a person is being looked
after in hospital, the need for a carer or relative to be there all the time would depend on the
patient’s state of health and their connections in the city in which they have been hospitalised
and things like that. How do you solve that problem? Should there be a discretion to grant, say,
an allowance for a carer to stay nearby for that patient or should it depend on whether that
patient already has family living in the city or wherever it might be?

   Mrs Hillenbrand—That would be assessed in any case. If a person had family here, they
would be kept with us while the patient was in ICU and then they would stay with family. That
would happen. But if they had no family, I still feel that the carer needs to be there. It is the
trauma of someone having been through ICU, not knowing whether their family member or
whoever is going to live or die. Finally, it does become good but there is still the impact of not
wanting to leave that person.

  Ms Mace—When you first leave ICU, it is not suddenly and magically all over. If you have
been that unwell to be in an intensive care unit—

   Mrs Hillenbrand—Yes, they have a long way to go down the track.

  Mrs Collet—That is right—a very long way down the track. Also, if they have a carer with
them, emotionally they are a lot better off and will respond more to the treatments. They will eat
better and so they will recover more quickly.

   CHAIR—That makes sense.


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  Mrs Collet—It saves dollars in the long run.

  Mrs Hillenbrand—It is all about people care.

  Senator MOORE—The department told us about the meet-and-assist service—and they are
going to tell us more about it. They think this initiative will help a lot. It picks up the kinds of
cases you describe, Mrs Hillenbrand. From the perspective of the two hospitals, how does meet-
and-assist work? Where do the meet-and-assist people live? Are they part of the hospital staff? I
want to know exactly how it works, because it is a very big issue.

  Ms Mace—They have been incorporated into Country Health. They used to be what was
called Hospital Liaison, which has recently been moved to come under the WA Country Health
Service. Those people live in the city. Certainly the experience of PMH is that the PATS clerks in
the hospitals link them into the meet-and-assist. It does not happen at our end. They meet our
patients at the airport—which would have solved that gentleman’s problem—and take them to
their accommodation. That is the extent of it currently.

  Senator MOORE—They do not take them from the accommodation to the hospital?

   Ms Mace—Not to PMH, they don’t. And they do not assist with getting them back to the
airport. So we are giving out taxi vouchers galore to get people from their accommodation to
their appointments, to admissions or to their home at the end of the day, if the parents are not
staying at PMH, and back to the airport for discharge at the end. So our taxi costs are fairly
significant.

  Senator MOORE—Are meet-and-assist at Sir Charles Gairdner?

  Mrs Hillenbrand—It is the same sort of situation.

  Senator MOORE—It is only on the arrival journey not—

  Mrs Hillenbrand—On their arrival, it is generally to their accommodation.

  Senator MOORE—Did you get the impression this morning that it was only a one-way trip?

  Senator ADAMS—No.

   Senator MOORE—I just want to make sure, because I am beginning to think I need an
interpreter.

  Mrs Hillenbrand—They would not like it to be that way. I went to the meet-and-greet
opening the other day, and it was really good. I was talking to the nurse—

  Senator MOORE—It is that recent that there was an opening?

  Mrs Collet—It is only recent.



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  Mrs Hillenbrand—It was last week.

  Mrs Patterson—Communication about these things would be helpful.

 Senator MOORE—It is a good initiative. I take it that your units were not involved in
working through this process?

  Mrs Collet—Everyone using the process could be involved and the whole thing set up.

 Senator MOORE—But you know of it. Mrs Hillenbrand, you have actually seen it opened,
which is fabulous.

  Mrs Hillenbrand—I know the nurse who will do the driving. Dallas, the nurse, has a car that
can fit four people in it. I said: ‘Okay. When you get out to the airport, who do you pick?’ A few
people might have come down with their carers, and it is: ‘Sorry, I can’t take you.’ We need a
minibus.

  Senator POLLEY—It is a great idea but it needs to be broader.

  Senator MOORE—Do you have some printed data in your hospital areas that talks about
how it works?

  Mrs Hillenbrand—I picked up some paperwork from that meeting.

  Mrs Patterson—There is a small brochure—a leaflet—that states things about it, but it is not
very informative.

  Mrs Hillenbrand—I have a couple of booklets from that meeting.

  Senator WEBBER—That you were not invited to?

  Mrs Patterson—Yes.

  Senator WEBBER—It is working well!

  Senator MOORE—If you have a look at the Hansard of today’s hearing, the first witnesses
were from the department and one of them talked about the system. Maybe you could find out
where that unit is and get more information about it, because it does seem to address one of the
components of the patient journey. We will just see how it goes.

  Mrs Patterson—Talking about communication, that is probably our biggest problem.
Information about anything that transpires or any changes that occur goes to the PATS clerks, but
the hospitals are never notified of it. A few months ago, someone came around to give us a brief
on the new rules. The rules used to be in a nice big fat file, and now they are in a thin file which
consists of one-liners that can be very easily misconstrued. We are never notified of any changes.
We get more information when we contact a PATS clerk, who says: ‘This, this and this has
happened now,’ and we say, ‘We didn’t know.’ The last meeting that I went to was seven years
ago.

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  Mrs Collet—That is the one I went to.

  Senator MOORE—You remember that meeting!

   Senator ADAMS—I would like to discuss multidisciplinary care. One of our terms of
reference was about getting access to an appropriate specialist and multidisciplinary care team.
Would you like to comment on how valuable that is for your patients?

  Ms Mace—Being part of an allied health team, I would like to say that they are crucial to the
recovery and the treatment.

  Senator MOORE—And the important role social work plays in those teams.

  Mrs Hillenbrand—That was one of the issues that we were talking about.

   Ms Mace—Yes. Also the fact that allied health staff are very thin on the ground, particularly
in country areas.

  Mrs Hillenbrand—They almost do not exist.

   Ms Mace—Yes. Depending on what people come in for—and I do not want to minimise what
the doctors do; the doctors treat a lot of people—but for those needing rehab there is the ongoing
care. Once a person passes the acute admission diagnosis, there is physio and OT—a lot of
rehab—which is actually the treatment. Children quite often stay in hospital for that. The doctors
see them as part of their ongoing rounds but they are not actively treating them. So allied health
is crucial in those sorts of settings, but getting the follow-up treatment back in the community is
very difficult for people. The big thing is that you cannot get PATS to come down for any allied
health appointments. You have to wing it and somehow create a doctor’s appointment.

  Mrs Hillenbrand—Even with dental treatment, there is nothing. You are talking about
children in the country who possibly need orthodontic treatment.

   Senator ADAMS—Someone going to the nearest specialist, as is stated, may not be able to
go to the appropriate specialist, and then there is no backup care unless a person is lucky enough
to get an appointment.

  Ms Mace—You may have a physio in Meekathera, let us say; however, they may not have the
specific speciality around paediatrics or around a particular condition. If you have got them
there, it is wonderful—but it is about the skill, too. There are some conditions that it should be
expanded to.

  Mrs Hillenbrand—I agree.

   Mrs Patterson—Children with cochlear implants would probably be a good test case because
they see all allied health when they come to PMH. Families get quite distressed that they get
told, ‘You’ll see the specialist and the speech therapist down in Bunbury,’ but then they have to
come up here for the other specialists they have to see at the same time. They get displaced about
who is doing what and about continuity of treatment. We had a war with South-West PATS. We

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have worked out another way to do it without them knowing. It is stressful for those families—
extremely so.

  Senator MOORE—Does the family have a treatment book in that case? I have seen in some
hospitals a treatment book with a page for each of the various—

  Mrs Patterson—I am not sure.

   Senator MOORE—treatments they need, and you just sign it. It is reinforcing for the family
to have that sense, but I do not think that is a standard practice.

  Mrs Patterson—The specialists are happy to sign off for these families without any qualms,
but it is difficult. Geraldton and the north-west are happy to send these children down—no
qualms—but the south-west will not in a million years let them come up.

  Senator MOORE—To the major hospitals?

   Mrs Patterson—Absolutely. That is probably the only complaint that I have—as in ‘war
zone’—in trying to get cochlear implant children up here. Dental is the other thing. If an
emergency case is sent down to Princess Margaret, there are cases where PATS clerks will not
send them back home because it is not, maybe, a child under eight who has had anaesthesia or it
is not trauma. The dental surgeon or dentist sent them down to us regardless. They did not have a
choice; they thought the parents were doing the right thing in bringing their child to the hospital.
They get down here and are told—

  Mrs Hillenbrand—‘Too bad.’

  Mrs Patterson—‘Too bad.’

  Senator MOORE—So they are out of pocket. They have done the treatment.

  Mrs Patterson—We have to find the money for them to get back home.

  Senator MOORE—If they do not have the cash.

  Mrs Collet—One of the grievances is that after six months of people having treatment here in
Perth, they have often been told they have to relocate. People can be here for a long time.
Transplant patients have to be in Perth because if they are in Port Hedland or Broome, even if
they have a pager, they may not be able to get the transplant done because there is no time to get
down. They have to stay in Perth. They might have families in Broome or Port Hedland with
children going to school and they are simply told, ‘You have got to relocate after six months
because your time has run out. PATS is not paying any more.’

  Ms Mace—That almost goes against some of the advice we give to families. To totally uproot
and move is not a good long-term planning option. Sometimes families literally juggle between
the two. Dad goes down and does a bit of work or comes up, and they swap back and forwards,
but then they tell them, ‘No. You have got to relocate if you want any PATS assistance.’


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  Senator MOORE—Is that in the rules?

  Mrs Hillenbrand—It is in the rules.

  Senator WEBBER—I read it on page 7 of the booklet.

There is a six-month limit to the provision of PATS accommodation assistance.

  Ms Mace—Yes. Rent is a big issue for our oncology patients. They have to face it frequently.

  Senator WEBBER—It goes on:

  If you need to remain close to a treatment centre beyond six months, you should consider relocating your permanent
address.

  CHAIRMAN—That is, ‘must’.

  Ms Mace—We interpret that as ‘must’.

  Mrs Collet—People are being told to go and see the social worker for relocation. I have had a
couple of people.

  Senator ADAMS—It is a bit harsh.

  Ms Mace—Unless you are very well-resourced, getting accommodation in Perth currently—
with the rental market and everything else—is impossible. I have another slight point on that.
There is the six-month one, but the other one is that you are allowed $35 a night but, if you are
going to be here long-term, you are allowed a weekly rate of $140. They then say to you, ‘You
need to go into a private rental agreement.’ You cannot get anything for $140.

  Mrs Hillenbrand—Double it.

  Ms Mace—Not even that.

  Mrs Hillenbrand—That is being generous.

  Senator POLLEY—And you may not want to move into that house.

  Mrs Hillenbrand—No. So there are other issues there.

  Senator ADAMS—The other thing is that they may be renting a home back where they have
come from.

  Mrs Hillenbrand—They are still paying for it, yes.

  Senator ADAMS—I have still got a list of questions a mile long.



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  Mrs Hillenbrand—We could go on all day. I think you know the issues.

  CHAIR—If you could put that in writing for us, we could have a look at that.

  Ms Collet—Okay.

  Mrs Patterson—I think some of the grievances about some of the stuff that has gone on we
have mentioned in our statement—we have cross-referenced.

  Ms Collet—I would like to see written information given to the patients when they come
down. Very often when they come down they have been given the PATS form, the blue form, and
been told to get the doctor to sign it, but they have no idea how to get back. It is the same at
RFDS. When they come to RFDS, they are just in the plane, they come down and they do not
know how to get back. If they had some written information when they depart of who the contact
person is, they would have a bit of an idea of what they needed to do and would not have to
come to social work or get other people involved.

  Senator POLLEY—And some families have a lot of pride. They do not want to ask for help.

  Ms Collet—Absolutely. You are not wrong on that.

  Mrs Hillenbrand—But not knowing your basic rights and responsibilities.

   Senator POLLEY—Yes, what I can have, what I cannot have and what I can do. That
information makes a lot of difference.

  Ms Collet—That is one of my biggest issues.

  CHAIR—Thank you for your evidence today, ladies. It has been very useful indeed.




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[2.28 pm]

ATKINSON, Mr William Thomas, Chief Executive Officer, Shire of Sandstone

PEARSON, Mr Keith, Chief Executive Officer, Shire of Ashburton

  Evidence from Mr Atkinson was taken via teleconference—

  CHAIR—Welcome. Information on parliamentary privilege and the protection of witnesses
and evidence has been provided to both of you, I understand. We have submissions from both
shires in front of us. We appreciate the information in those submissions. I invite each of you in
turn to make a short opening statement, if you wish, on the issues facing the committee, and we
will then proceed to ask you some questions. Mr Pearson, would you like to go first?

  Mr Pearson—Thank you for the opportunity to make this presentation. The Shire of
Ashburton is one of the four local governments that make up the Pilbara region, which is located
about 1,500 kilometres north of Perth. It is an area that is undergoing substantial resource
development at the moment. It is characterised by its remoteness and its size and the heat. The
Shire of Ashburton covers about 105,000 square kilometres. It has four towns and it has a
population of about 6,000 or 7,000 people living in residential circumstances. There is a fly in
and fly out component on top of that and there is also an Indigenous community.

   In the area over a period of time there has been a general degeneration in infrastructure and
services. This has happened at the regional level and to some extent at the state level. The issue
that probably generates the most passion in the community—outside of education—is health. It
becomes apparent when we talk about the PATS scheme that it has been superimposed on a
rather extreme environment. Also, it has been imposed on a system where the health services
infrastructure that is in place is not great. The recent document titled Foundations for Country
Health Services is very much geared towards a hub and spoke type health service. In the context
of the Shire of Ashburton, Tom Price, Paraburdoo and Onslow are three towns that have small
hospitals that feed into a regional hospital in Port Hedland. The issues are: hub and spoke does
not work because there is no spoke in the sense that there is no public transport; there is no
commercial link or integration of any type whatsoever between any town in the Pilbara at the air
level; there is absolutely no land service of a commercial public nature; and, all interaction is
through private travel. We are talking about extremely long distances and times. Most one way
distances are 400 to 500 kilometres or more. This puts great pressure on patients because, the
way the system works, carers do not get a great deal of support through the PATS system. Also,
the road systems, the distances travelled, the safety risks from animals on the road, the sheer heat
and such types of things mean that it is a test for an able-bodied, healthy person, let alone
someone who is suffering an illness.

  A lot of services are not available in the area at all and as a consequence there are on-referrals
to Perth. It is becoming clear that the PATS scheme is failing to cover basic costs by a
considerable margin. I will give one example of what those costs are. A local member of the Tom
Price community went to Karratha to have a trigger finger operated on, which is certainly not a
serious operation. It involved a general anaesthetic, meaning that the person had to be there the

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day before because it is not possible to get from Tom Price to Karratha on the morning of the
operation. After the operation was done there was a need to stay for another day because a
general anaesthetic had been used. The result was that three days were spent in Karratha.
Accommodation, which may not be available because of the resource boom, is somewhere in the
vicinity of $180 to $200 a night. The cost of driving a vehicle from Tom Price to Karratha and
back is $250 for fuel alone. So the total cost was about $800 to $850. The reimbursement was
about $80. There are lots of examples of this. Because of the distance aspect, the system fails to
take into account the time aspect that is involved in people’s treatment. This becomes a critical
factor. particularly in relation to carers accessing the PATS scheme.

  An example that has come to my attention in the last few days involves a 16-year-old boy in
Onslow—which is one of our coastal towns—who has lived in the town all his life. He has a
serious kidney complaint and has to go to Perth. His mother has not been able to obtain PATS.
We are talking of a 16-year-old youth who has had very little exposure to Perth so he is facing a
big adventure in its own right. It would be normal—and it will happen—that his mother will go
with him. The system is not helping people in circumstances like that.

  CHAIR—Thank you very much, Mr Pearson. Mr Atkinson, would you like to make an
opening statement as well?

   Mr Atkinson—The Shire of Sandstone put in the submission, as you are aware, but I would
like to speak on just the social challenges facing the Shire of Sandstone and its adjoining shire,
the Shire of Mount Magnet, which is 150 kilometres to the east. I would like to draw that shire
into the equation because they are facing some critical issues in a range of services, particularly
health.

   Basically, our submission to the PATS inquiry centred around the fact that there is a huge cost
involved because of our remoteness. Whilst our shire only has 150 permanent residents, the
closest services of any tangible nature are really Geraldton or Kalgoorlie, both 500 kilometres
from Sandstone. A number of people go to Perth. So there is a significant cost in travelling and
also a significant cost in lost time for those in the workforce.

   The health situation in Sandstone is such that we receive one visit every three weeks from the
Royal Flying Doctor Service and one visit every four weeks from the Geraldton Regional
Aboriginal Medical Service. In Mount Magnet the situation has become quite dire, in that, from
having a full-time general practitioner a couple of years ago, the town of 700 people is now
serviced once a month by a visiting medical practitioner from Geraldton who sees between 60
and 70 clients for one day a month. The nursing posts have gone down from four nurses to one.
It is a town which is experiencing significant social and health problems in terms of drug and
alcohol abuse, which of course precedes child abuse. There is a shortage of police there which is
being addressed. Certainly child protection and community service personnel need to be
addressed. The education system is struggling and the health system, as I just mentioned, is in
dire straits.

   People really have little choice, if they want immediate attention to their health issues, than to
travel to the nearest regional centre, again 500 kilometres from Sandstone and about 350 from
Mount Magnet. The basis of Sandstone’s submission was that the PATS payment needs to be
increased from its current level to keep pace with cost of transport and also the fact that people

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in remote areas are much more disadvantaged than those that are not who can access services
more readily.

  The second point, which raises another dimension, is that it is my understanding that, whilst
PATS was payable in certain circumstances to access specialist medical services, the suggestion
has been put to the Shire of Sandstone that in situations such as ours and Mount Magnet PATS
should also apply to accessing general practitioner services. So that is really the basis of our
submission. I also thank you for the opportunity to participate.

  CHAIR—Thank you very much, Mr Atkinson. Mr Pearson, you mentioned the case of a
person going for a trigger finger. Was it Karratha you mentioned?

  Mr Pearson—Yes.

  CHAIR—It was $800 for the cost of the trip, with about an $80 reimbursement. In your
experience, is that about typical of the rate of return, the rate of subsidy, people receive under the
PATS?

   Mr Pearson—It is in our region purely and simply because of the distance. There are two
things about the distance. One is the cost of actually physical travelling. The other aspect is that
it means there are a number of days involved in what may have been, in normal circumstances, a
one-day event. Perhaps if somebody was in metropolitan Melbourne they could go down, get
their trigger finger looked at and operated on and be home again relatively quickly. It is basically
a day to travel somewhere and another day to get back.

   The dominant vehicle type is four-wheel drive, and it is certainly a safety issue. The
operational costs of them, according to our engineering section—and we run a number of these
vehicles ourselves—is typically about 28c per kilometre. That is a direct cost. That reflects the
cost of local petrol and fuel—nothing else. It does not include depreciation, registration and
repairs. I presume that is the sort of figure one would take into context in terms of a PATS. It is a
direct cost. The person has had to buy the vehicle and they would have it anyway. At the
moment PATS is not even making half a reimbursement of the direct travel costs.

   CHAIR—Mr Atkinson, the issue of accessing GP services is a significant one and that
suggestion has been made to us in a number of submissions. I assume that you would regard the
other conditions of eligibility for the PATS as being a reasonable basis for accessing GPs. You
would say that if a person has to travel, in the case of Western Australia anyway, more than 100
kilometres to get to a GP and the services that the GP is providing are appropriate—and I
suppose even having a check-up or whatever might be considered an appropriate use of a GP—
they ought to be able to access the PAT Scheme.

  Mr Atkinson—That is correct, yes.

  CHAIR—Has that been proposed in a formal sense by your shire or others accessing these
sorts of services in remote Western Australia? Has there been a move to put this to the state
government?



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   Mr Atkinson—I believe so. I can only speak insofar as I am a member of the Murchison
District Health Advisory Committee, and those committees are supposedly the conduit between
the public and the health department of Western Australia. I think it would be more than 12
months ago that I presented a proposal to the health advisory committee that the PATS was far
from covering anywhere near what it should be for people in this region and that the committee
should take that through to a higher forum. I have been frustrated because there has not been any
feedback from the state on that at all. I requested that a formal letter go out from the district
health advisory committee through the regional manager to whoever the responsible person was
in the health department, probably the CEO of the WA Country Health Service or something.
However, nothing has occurred, which has been quite frustrating because my role as a DHAC
member is to listen to the concerns of the community and to convey them through to the health
department via that mechanism, and nothing happened. That is why I was particularly pleased
when the Senate inquiry came about, because at least it will give us a voice. I am not really sure
what other moves have been made in Western Australia to progress PATS, but I am fairly certain
there would have been some.

   Senator ADAMS—I am actually from Kojonup, and I have worked right throughout the
north-west as a relieving matron for many years. I have been to Sandstone and I have also been
to Karratha, so I know what you are talking about. I have been involved with hospital boards for
a long time—and of course they were abandoned and we had this new body of district health
advisory committees. You have had no luck with PATS but on any other health issues, as far as
access goes, are you getting a response?

  Mr Pearson—Speaking on behalf of the Shire of Ashburton, we would argue very strongly
that we are not. I guess one of the issues that comes out is that PATS would not be quite so
important if there were closer access to other health services, so it is not as though PATS stands
alone; it certainly does not. Certainly in the case of the Shire of Ashburton, council has argued
very strongly that the range of services being offered at, say, the Tom Price or Paraburdoo
hospitals or at the Onslow Hospital are less than they were previously, and certainly less than
one would reasonably expect. The council has taken it to the point where I personally have met
both the minister and the CEO of Western Australian Country Health Services on the matter.
Certainly the message has been given to us very forcefully that the document, ‘Foundations for
Country Health Services,’ and the documents that preceded that have set the template, and that is
the template we have to live by. We have argued that it is pretty hard to apply that template to
our particular environment, but certainly that argument has not won any brownie points yet.

  Mr Atkinson—Senator Adams, I have had a fair bit to do with the health system in the past,
and I am a former hospital board member. It is my view—a view shared by several others,
including the chairman of my current DHAC—that the current system of DHAC is just a shadow
of what the hospital boards were. There is a distinct feeling that DHACs were created to provide
a community voice. However, no-one could be serious about their dealing with the same issues
with the same interest, if you like, as hospital boards. There is a feeling that DHACs were
created for management expediency, because they are easy to handle by the centralised system
that prevails in Western Australia now. Another observation is that because DHACs are not
heard, certainly there is a very indirect line to the top, you get very little feedback and you do not
have any autonomy in running your local health service. It is really lip-service from my
perspective.



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   Just to continue on that for another minute, the centralisation of the health system in country
Western Australia has not been good for the client. For example, there is a suggestion that there
is rationalisation of health services by stealth now that the recruitment processes have been
centralised in the health department. Sometimes jobs are advertised for allied health people—
nurses or whatever—and they take ages to be advertised and ages to fill. People get used to
looking elsewhere because they do not have any alternative, and because the numbers are not
showing up in the statistics that warrant the positions the positions are not filled.

   Just to give you a quick example, at our last DHAC meeting I put this question to a health
department person: why have we gone from four nurses down to one at Mount Magnet? Bearing
in mind that this is a community that is having tremendous social and health issues I said, ‘What
are you doing about it?’ The response was, ‘We are keeping our ear close to the ground.’ I said,
‘Whoopy-do!’ If I lost all my grader operators we just do not stop grading the roads, you actually
fix it. I know staff are hard to get hold of but a response like that is fairly typical, and you just
seem to have to wait until a crisis occurs before it is addressed. To answer your question,
DHACs are not fulfilling the role anywhere near that which hospital boards were in helping to
ensure that a decent standard of health services are provided to country communities.

  Senator ADAMS—Thank you. Mr Pearson, would you like to comment on that too?

   Mr Pearson—I would like to make a comment in one respect. One point I would like to add
is that one of the issues that comes out very strongly in the arguments put to us about not
changing the model is that there is no demand or that there is no registration, so to speak, of the
level of activity going through the local hospitals and, therefore, the services are not needed. But
it is becoming a bit of a self-fulfilling exercise because the local hospitals have had their
functions taken away and centralised and, obviously, because that service is no longer provided
locally more and more services are drifting out into the centralised level of activity.

  We are finding that although Port Hedland has been nominated as the critical hospital in our
region, for example, it unfortunately does not function in that role yet. It does not have the
resources, and I understand a lot of those reasons: there is a lack of human resources and I
suspect they have a lack of financial resources. The end result is that we have ended up with a
model that we cannot convince anybody does not work, and the great irony is that it is easier for
somebody to get from Tom Price to Perth than it is to get from Tom Price to Port Hedland. It is
simpler, it is more efficient and there is more likelihood of actually being serviced with the
particular service needed. To deviate from the template for the Pilbara—and I presume the
Kimberley has got the same problems—there is perhaps a concern on the part of the state that it
will set a precedent. So we have got such a philosophical difference with the state in relation to
the nature of health care that any sort of advisory committee is just tinkering around the edges to
us. Certainly, in terms of the local hospitals, the advisory committees have not got a lot of say.
The terms of reference for them are so narrow you are implicitly accepting the model before you
even start making any comment. So we are at the point that we have not even got to the table.

  Senator ADAMS—As far as referrals for specialist services, from Karratha would you be
referred to a specialist in Port Hedland or in Perth? What is the practice usually?

  Mr Pearson—Very much to Port Hedland or Karratha, which is a cause of great angst with
the GPs, for example, at Tom Price. I notice you have had a submission from a GP in Tom Price.

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She raised the issue, for example, that she makes a referral for a patient to a particular specialist
because she professionally believes that that specialist provides that service and has that
experience. She is finding that her referrals have been overruled by the clinician in Karratha, for
example, who is processing the PATS application. But that is not just one case. Other GPs who
operate through the same practice at Tom Price are having the same experience. So their
professional judgement has been overruled by somebody who is 400 or 500 kilometres away
who has not even seen the patient. I can imagine that causes a certain amount of professional
angst for a doctor.

   Senator ADAMS—That is a problem as well. The fact that there are no services—this is a
situation which I am very happy has been brought up, because it is almost like going backwards.
In trying to get to Port Hedland there are no flights, nothing; whereas they can fly every day or
twice a day to Perth. Yet they are being overruled to keep the service in Port Hedland because
there may be a specialist, but not the right specialist, in Port Hedland. The whole thing is just
going in circles, and the patient at the end is the one that is suffering.

   Mr Pearson—I am talking from the point of view of representing the consumer in a sense,
and I will be honest. In talking to these people I have to say that, from a compassionate point of
view, one realises a lot of these people are climbing very high mountains but they are having
other hills put in their way. They are fighting them with a lot of dignity. They are doing a lot of
climbing, with a great deal of inner strength. I cannot get over the emotional trauma some of
these people are experiencing just because they cannot get family support and because they
know they should not be going in a particular direction but that is the requirement of the system.
So it is very much putting extra hurdles in peoples’ way.

  Senator ADAMS—From Onslow, would they have to go to Carnarvon or Port Hedland?

  Mr Pearson—Onslow used to be a part of the Gascoyne, which was Carnarvon, but a lot of
activity went to Exmouth. Now, it is back in the Pilbara region and they go to Karratha.
However, Karratha has its own issues. For example, childbirth in the Pilbara region basically
involves somebody being flown out four weeks before a baby is due. The ability to deliver
babies in Port Hedland is limited. Again, people are incurring all this time in Perth at great
personal expense and without a support base. Spouses are left at home looking after children,
maintaining jobs and the like.

  I had a discussion with a 68-year-old gentleman this morning. For 37 years he has lived in
Tom Price, so he is very much from the bush, so to speak. He is having chemotherapy for six
weeks. He got paid to come down and go back from Perth, because that is the only place where
you can do chemotherapy. He gets $35 a day after the first three days, so for the rest of the time.
He is paying $100 a week. He is in a hotel room on his own for six weeks. He cannot get his
wife to come down. There is no PATS for that.

  CHAIR—Thank you for that. The point was put by the state government this morning in their
submission that there is a downside in improving the PATS, and that is that it can potentially
reduce the effectiveness of local practitioners in those remote areas—not necessarily the GPs,
but any specialists who might either be there or visit those areas. Of course there is also the
MSOAP to bring specialists into those regions as visitors. Can each of you perhaps tell us
whether, if a couple of million dollars were found tomorrow to spend in your areas, the best use

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of that money would be to invest in additional MSOAP type visits to the region with specialists
or to enhance the PATS to allow people to come out of the region into places like Perth?

  Mr Pearson—I frankly cannot see why the money should be put into transferring the
specialists to places like Karratha and Port Hedland. The fact is that the costs incurred are
potentially much greater for a person, say, from Tom Price or Paraburdoo to go to that specialist
there. They could get to the specialist more readily if they were based in Perth, because there is a
commercial air link. The frustration factor is so great that a number of people just bypass the
PATS and incur their own costs and go to a specialist of their own choice. I think the change in
the system it would make on the edge would be so minimal it would be not observable.

  CHAIR—Mr Atkinson, what is your view?

   Mr Atkinson—My view is somewhat similar. When getting specialists to remote areas on an
intermittent basis, you run the problem of people trying to keep appointments. Bear in mind that
a number of our people are Indigenous and they are fairly mobile and have cultural issues to deal
with like going to funerals, attending to family matters or whatever. It is quite hard, if you say a
particular specialist is going to be in this place at this time, to actually coordinate that. I would
probably prefer to see the PATS applied to helping people get to regional centres or to Perth.

   One of the issues aside from everything is that, with the number of people that go down from
these areas to Perth, there is no support mechanisms when they get there. There have been
several recorded instances of people going to Perth, getting off the plane and then not attending
their appointments and just vanishing into the ether for a while. Seeing as how the costs have
already been incurred through PATS if they are subscribed to that, it is a gross waste of public
funds if there is not a little bit spent at the other end to ensure that they are looked after a bit,
they have adequate accommodation and they front up for the medical service required.

   Senator MOORE—I have been asking some of the different state agencies as we have been
meeting with them about what the applicable government rate is for government travel. I note
Mr Atkinson from Sandstone—it is a nice name; I have not been there—has put a statement in
the report here that says what the PATS reimbursement would be for the case study you
mentioned. Have you raised from either of your shires the discrepancy between the government
rate if you travel for work as opposed to what the PATS subsidy is now? Have either of the two
shires raised this with the state government?

   Mr Pearson—The Shire of Ashburton has not. It became very obvious when we recently had
a report go to council which established councillor travel rates, which is sort of the same thing in
a sense.

  Senator MOORE—When you established the council rate did you follow the state rate?

   Mr Pearson—Yes, and it is 50c to 70 c per kilometre. That is obviously again for direct
motoring costs. The disparity became very apparent. The Shire of Ashburton has not argued that
point because in a way we have been trying to argue that we are trying to reduce the level of
PATS activity. Having said that, we are not making a great deal of progress. Obviously this is an
alternative line of attack.


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  Senator MOORE—And from Sandstone?

   Mr Atkinson—We arrived at the figure of 70c because it is within the government rate for
reimbursement for private travel or use of private vehicles, if you like, on state government
business. A number of my councillors here are on various state boards, committees and things,
and that is what they get paid. I would make the point, though, that I am not necessarily
suggesting it be 70c, because PATS was never and probably should never be designed to meet
the complete costs of travel because people do other things when they go for medical
appointments as well, to be realistic. I think we probably should try to find some formula where
there is a reasonable medium so that it is not open to abuse. Seventy cents seems to be the
recovery rate of running a vehicle and does not, and should not, address the cost of lost earnings
or anything like that.

  Senator MOORE—So you are looking at somewhere between 13c and 70c—is that right?

  Mr Atkinson—Absolutely—a fair bit more than 13c, I might suggest. Probably even half the
cost could be justified.

   CHAIR—Thank you very much, Mr Pearson from Ashburton, and thank you, Mr Atkinson
from Sandstone.




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[3.05 pm]

ALI, Mrs Norzaini, Private capacity

THOMPSON, Ms Charlene, Private capacity

  Evidence was taken via teleconference—

  CHAIR—Welcome. Are you on Cocos Island or Christmas Island?

  Ms Thompson—We are on Christmas Island.

  CHAIR—Do you have any comments to make on the capacity in which you appear?

  Ms Thompson—I am a freelance social worker and I have written a submission. I am talking
to the inquiry today on behalf of some of the families of the Christmas and Cocos Island
community.

  Mrs Ali—I am working as an education assistant, and I am a mother with four children.

  CHAIR—I understand that information on parliamentary privilege and the protection of
witnesses in evidence has been provided to you. We have the submission that you have sent in to
us. It is a comprehensive one and on behalf of the committee I thank you for providing that. Our
practice is to ask you questions about what is in that submission but, first of all, I invite you to
make a short opening statement before we go to questions.

   Ms Thompson—I will speak for a couple of minutes and then Zai will put our opening
statement into context and then I will continue.

  CHAIR—Please proceed.

  Ms Thompson—Thank you for the opportunity to address this inquiry. Members of the
Christmas and Cocos Island community would especially like to thank Mary-ann McQuestin of
the Department of Transport and Regional Services for encouraging the community to make this
submission.

   I am a qualified teacher and a qualified social worker, and I have postgraduate qualifications
in teaching English as a second language. I have over 15 years experience working in a
Commonwealth government department. I am making this submission on behalf of the
community, as a private individual and as a gesture of my social work business’s charity to my
island community. The written submission, community consultations and opening statement took
about 60 hours of my voluntary time to complete.

 As you heard, with me here today on Christmas Island is another witness, Zai, a Malay-
Australian, living on Christmas Island. I am proud to have Zai here with me as a witness to this


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Senate inquiry. Zai’s first language is Malay and her second language is English. She will make
a brief opening statement and then I will continue.

   Mrs Ali—I just want to share with you my experience of giving birth on Christmas Island and
in Perth. I have three boys on the island. I feel that it is easier for me to give birth on the island,
with friends and family support here. The last baby, the fourth one, was difficult. I had the baby
in Perth. I lacked the support. My memory of leaving them behind is very sad.

   Ms Thompson—Senators, it would seem to me that the intention of Senate inquiries is an
honourable one in that inquiries are available to all Australians to make a submission and have
their voice heard. Therefore, I want the inquiry to note that when we ask for a TIS telephone
interpreter to ensure that our joint testimony could be as correct as possible, we met with a
blockage and we have not been offered the facilities of a telephone TIS interpreter today. It does
not take three days to arrange a telephone interpreter service anywhere in Australia or a technical
guru to organise a telephone interpreter. I am disappointed and ashamed that people whose first
language is not English are discriminated against in this way.

   I want to raise the awareness of the ineffectiveness of a scheme such as PATS to offer real
financial and practical assistance to families from Cocos and Christmas islands who are having
babies. I want to raise your awareness in my submission of the misfit between the needs of
families having babies and the practical contingencies of having to go to Perth under the current
arrangements for bearing children here on the island. I want to raise your awareness of a serious
criticism that such a scheme as PATS suffers as a consequence of these current arrangements for
having a baby on Christmas or Cocos islands. I draw your attention to a list of these difficulties
on pages four, five and six of our submission.

  CHAIR—Thank you. Is that the end of your opening statement?

  Ms Thompson—No. Shall I go on?

  CHAIR—Yes, please go on. We only have half an hour for this session and we have some
questions for you. Please proceed.

   Ms Thompson—Thank you. How can I explain remote to you so you understand how remote
affects you directly? Yes, we have a hairdresser and a dental service through the Indian Ocean
Territory Health Service hospital here. Yes, we do not pay GST, but we can pay up to $8 for an
airfreighted letter. If you want to get your car fixed here, that is probably going to be a problem
unless you can afford to pay for airfreight for the parts. If you have a relative ill somewhere
suddenly in Australia and you want to fly there quickly, no, you most likely cannot because there
are no seats available for four weeks or possibly three months on the three planes a week that fly
into Christmas and the two that fly to Cocos Islands every week. You cannot jump into a car or a
bus and travel from here. You cannot catch a boat. We have to fly. We have to fly to get
anywhere, and it is expensive.

  I am not whingeing about this; I am describing the practical realities of living on these islands
so you can put into context the main issues and solutions raised in this submission. I have been
shocked by the anger, grief and feelings of resentment and disempowerment by those families
who came to give their views which made up this submission. Some women wept. Some have

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such bitter feelings and carry such resentment for incidents involving their trips to Perth to give
birth that they can articulate every negative detail five years, seven years later. If you note the
cases mentioned at point 22 on page six, for these families, bearing a child has been a critical
event which has left unresolved bitterness in their minds and hearts, and in our community.

  In summary, from my scan of the community here, it seems to be a burden for families to
consider having a baby if you live on Christmas or Cocos island; not a joy, a burden. The PAT
Scheme, how it is delivered, how much financial assistance it has given, and the island’s PATS
service deliverer, the Indian Ocean Territory Health Service, are targets for significant
community resentment, criticism and ill feeling.

   This current arrangement for families having children does nothing to create happy and
healthy communities here. Families on the islands want a choice: to either have their baby in the
birthing suite at the local Indian Ocean Territory Health Service hospital on Christmas Island or
to get more practical and financial assistance to assist them to go to Perth.

   Page 13 of my submission lists some practical solutions. There are no non-government human
service delivery agencies on the island. The government is asking islanders, people who surely
must live in the most remote part of Australia, to accept normalisation of services. Consequently,
there has been a tweaking of service delivery to the island and restructuring of services to
islanders to align us with the practices and policies of mainland states; in particular, in our case,
Western Australia.

   Although we have a Western Australian postcode—6798 for Christmas Island—we are not
part of Western Australia. We are territories of the Commonwealth. It is such an irony therefore
that, as islanders accept normalisation of services and charges that most mainland Australians
take for granted, the most natural of processes for humankind—giving birth, forming family
attachments and developing family life—is currently, it seems, such a devastating experience
and has become such an abnormal beginning of welcoming a newborn into the family for many
islanders.

   The PAT Scheme is an admirable one whose intended policy is to assist people—patients—to
travel somewhere for medical assistance. I am sure that it may go a long way to ameliorating
distress and financial burden and saving lives for families on mainland Australia.

   Currently on Cocos and Christmas island, two of the remotest parts of Australia, PATS does
not meet, for those families having babies, the needs of the community despite the good
intentions of its policy writers and the attempts by the Department of Transport and Regional
Services through the Indian Ocean Territory Health Service—our hospital service here on the
island—to take account of the cultural diversity of the island and adjust their PATS guidelines to
accommodate some aspects of the policy to suit our unique culturally diverse population here
and on Cocos. You can see the adjustments that have been made in the appendix to this
submission.

  The government wants families to have more children. Some families here want to have more
children. It is significant that, in a community forum that was held to create this submission,
such angst and negativity about having more children was expressed. When I advised the
community who contributed their views to this submission of the opportunity to speak to this

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inquiry, one lady who was accepted as one of its leaders said, ‘Will we get into trouble?’ What
she meant was, ‘Will we get into trouble on the islands for raising issues about PATS and telling
the inquiry what happened to our families when we had to go to Perth to have a baby? Will there
be consequences for us in speaking up?’

   I think this lady’s question demonstrates the timidity and lack of confidence of sectors of the
island community to speak up and voice their concern. Although they are angry and feel
victimised by systems such as PATS, members of this community feel disempowered by their
experience and scared to challenge big systems for fear of the consequences and they are fearful
to offer their solution.

   There is clearly a need to review the right for islanders to give birth in their local hospital on
Christmas Island. It is clear that the current arrangements under PATS are not assisting families
in the way that they need to be helped. The significant factors of a very remote location, a lack of
real alternatives to having a baby, cultural diversity, a genuine fear of providing feedback to
government service providers without retribution and the total reliance on expensive air transport
to the island makes our requests for a review of PATS and the issues around giving birth for
islanders all the more compelling.

  CHAIR—Thank you. Is that the end of the opening statement?

  Ms Thompson—It is.

  CHAIR—Thank you very much. I invite senators to ask questions and I will ask them to
identify themselves as they do so. Senator Adams?

  Senator ADAMS—Thank you, Ms Thompson, for your very informative submission and also
that opening statement. I am an ex midwife, so I certainly understand the problems you have got.
With the review, have they actually looked—I note that it is 10 years since the guidelines
changed, and women have had to come to Western Australia to have their babies. Have they
looked at any way that you would be able to resume an obstetric service on Christmas or Cocos?

  Ms Thompson—Yes, there has been, but as far as I know it is only in a private paper that was
published by two doctors for the Western Australian Centre for Remote and Rural Medicine in
2005. As I note in my submission, as far as I am aware—and I think many members of this
community are aware—nothing has been done to investigate what Drs Susan Downes and Sally
Roach advised in that paper. Nothing has changed on the island in the last 10 years for women
having to go to Perth.

  Senator ADAMS—How many births a year would you have there—people that deliver?

   Ms Thompson—Susan Downes and Sally Roach, in their paper, quote 35 births a year. I
understand their paper says that that would be sufficient for accreditation of the hospital here in
terms of providing a birthing suite.

 Senator ADAMS—I was asking because the rules have changed for rural areas in Western
Australia. Have you got any practising midwives at all on either island?


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   Ms Thompson—We have. Anecdotally, I have heard that the director of nursing on Christmas
Island is actually a trained midwife. But, once again, there has been no movement to have
midwives deliver babies here, as far as I am aware.

  Senator ADAMS—I was thinking more about your antenatal and your postnatal care with the
midwives. What is the situation with GPs?

  Ms Thompson—I am sorry but I do not represent the hospital. We seem to have a fairly
permanent medical director, but then we seem to have a continuing rotation of locums through
Cocos and Christmas Islands. We do not have any antenatal or postnatal care, and women have
complained to me that they go to the doctor before they have their child to have a check-up, and
the next time they go it is a different doctor. I note some locums are as short as the month, so it is
not a very sustainable service in terms of a patient-doctor relationship or for continuity.

  Senator ADAMS—Going away from the obstetrics side, for any other specialist appointments
for which your people have to travel are they being accommodated by PATS? They are not
having problems with the system?

  Ms Thompson—Yes. I understand another lady on Christmas Island has put in a submission
about PATS and its guidelines for accompanying an older person down to Perth for treatment.

   Senator MOORE—Ms Thompson, your paper focuses on the extended time that the women
have to be away from their families and the dysfunction that that causes. You make two
suggestions: one is a one-off payment process, and I would really like you to give us a bit more
information about how you think that would work. As to the second one, as I am not from this
part of the world—I am from Queensland—I am not sure what community liaison is available,
but it is my understanding that there are community links in Perth for people coming from
Christmas Island. It would have been my hope that that would be the way, that people would be
met in Perth and looked after while they are here. Could we get some comment from you on
those two points?

  Ms Thompson—Yes, I wish there were community links but there are not any.

  Senator MOORE—There are not any.

   Ms Thompson—No. That is what I am trying to ask for here. At the moment there is nothing,
and families are just basically left to find their own way. That is what I am being told. The
husband and the wife are given the ticket to go there and, basically, that is it. You get there and
find your own way. I am all in favour of independence for people and of not assisting them
should they not want that, but you are also talking of people who may never have been to Perth
before, because they are not born in Australia but elsewhere, and so it is very confronting. Can
you remind me of your first question please?

  Senator MOORE—Your first recommendation was the concept of a single payment, and I
would just like to get a bit more information from you about how you think that would work.
You do not quantify exactly what would be included in that single payment, and I want to get a
sense of how that would work.


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   Ms Thompson—Thank you for clarifying that. I have done a bit of homework on the figures.
In the six weeks, which is what the hospital requires for families who are having a baby, you are
supposed to go four weeks before the birth date and then you have to stay a further two weeks to
make sure everything is okay. I have done a bit of a scan. For example, for two people to stay for
six weeks in Perth in three star accommodation is $3,118, rising up to $4,998 for six weeks for a
family of five. Plus there is the airfare for children—children over two have to pay the same
airfare, and that is $1,354 return. I am sorry but I have not done an overall calculation of what
would possibly be a better figure than the $35 a night currently paid to families to stay in a place
costing considerably more than that. I would think that that would need to be an exercise where
the community participates with the government or the social worker that the Department of
Transport and Regional Services has on the island.

   Senator MOORE—It seems from your paper that there is no choice offered to women, that if
they are going to have a child this is the method they have to follow because there are no
services locally. Does someone take the responsibility at the local hospital to pre-book all the
travel and to ensure that the travel is done? You mentioned the lack of services with flights, I
would imagine that there could be a couple of families who would be expecting children about
the same time and to actually book ahead the travel of people coming backwards and forwards
could be a problem.

  Ms Thompson—No, that does not happen.

  Senator MOORE—So it is up to the individuals themselves to go ahead and book the travel?

  Ms Thompson—Yes.

  Senator MOORE—To the best of your knowledge—we know you are operating in an
independent capacity—have these issues been raised with the territory’s minister?

   Ms Thompson—I did raise it at a community health consult that the Department of Transport
and Regional Services had here. Basically the answer was no, there are not going to be any
births on this island full stop. But there was not an opportunity really at that forum to go into the
nitty-gritty of difficulties for the community when they do travel to Perth. It was raised in the
meeting by another person here that women are flying to Malaysia and that, because they are in
their home and they have their friends around them and their family, culturally it is more
appropriate for them; this person asked the DOTARS representative why they cannot get the
equivalent of a lump sum PATS to do the same thing if that is what they choose? At the moment
that is where it stands.

  Senator MOORE—Thank you.

  Senator POLLEY—I should be able to relate because I come from an island, Tasmania, but
we are not quite as isolated as you are. Thank you for your submission. I was wondering about
the amount of funding that your residents receive through PATS, would that be better utilised by
having specialists and obstetricians visiting the islands?

  Ms Thompson—I think there would be consensus on that, yes. Women want a choice, but I
am getting the feeling that there is a very strong pull to again be able to have your children here

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on the island. They do want that. They want to do it at home and not have to take six weeks out
of their life to go through what is a normal process.

   Senator POLLEY—From your submission the obvious financial burdens on the families
from having to be away or being separated are quite significant, and I can appreciate that. In
your experience, are there concerns about the complexity of the forms that have to be filled out
and the process you have to go through to get PATS?

  Ms Thompson—Yes, that is right.

  Senator POLLEY—Have you got any suggestions on how that could be streamlined?

  Ms Thompson—I am sorry, I have not really thought that through carefully.

  Senator POLLEY—Would you like to take that on notice? If you want to make a further
submission to the committee that would be great.

  Ms Thompson—Yes, thank you for that opportunity.

  Senator POLLEY—Thank you for your submission.

   Senator WEBBER—I am also from Western Australia and, although I have not visited the
island, I have to declare an interest in that someone who used to work for me now works there so
I will be visiting very shortly, once we get this thing called a federal election out of the road I
presume. I have had some dealings with the community that comes down here to Perth through
the Christmas Island Workers Union. Have you had any relationship with them in terms of the
support they provide particularly for the Indigenous population coming down here to access
services?

  Ms Thompson—No. But they are very interested I think in the recommendations made in the
paper by Susan Downes and Sally Roach; that is my limited contact.

   CHAIR—You mentioned at the end of your submission, Ms Thompson, that mothers who
travel to Asia to bear children reported trained staff willing to offer support and assistance. Do
women from these islands travel often to Asia for childbirth services?

  Ms Thompson—I do not have any statistics on that. I think it is more a rarity and it is a
reaction to the current situation in travelling to Perth.

  CHAIR—Obviously if they did make that trip to Jakarta or Singapore, or somewhere like
that, they would not have any access to any government support for that, would they?

  Ms Thompson—That is right.

  CHAIR—Those are all the questions that we have, and I thank you very much. Could I just
make reference to the translation problem. We do sometimes take evidence through translators
but, unfortunately, because of the standards relating to parliamentary committee hearings and
Hansard it was not possible today to do that. I regret that fact, but next time let’s hope we can

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have enough time to be able to do that properly when you want to use a translator for giving
evidence.

  Ms Thompson—Thank you very much for your apology.

  CHAIR—Thank you very much for that.

                       Proceedings suspended from 3.31 pm to 3.46 pm




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NELSON, Dr Carmel, Medical Director, Kimberley Aboriginal Medical Services Council
Inc.

   CHAIR—Welcome. Thank you so much for taking time to be with us this afternoon by
telephone. Information on parliamentary privilege and the protection of witnesses and evidence
has been offered to you, I understand. We have a submission from the Kimberley Regional
Aboriginal Health Planning Forum. We thank you very much for making that available to us. We
would like to ask you some questions about it, but first of all I would like to offer you the chance
to make a short opening statement if you would like to take that opportunity.

   Dr Nelson—Essentially, I have written this as the Medical Director of KAMPS. It was done
on behalf of the Kimberley Regional Aboriginal Health Planning Forum. I was very keen to have
the opportunity to write the submission and really glad to have the opportunity to talk today and
answer some questions. I have worked in the Kimberley for nearly eight years, six of those as a
GP and a couple of those as a medical director, so I have had lots of experience on the provider
side with the PATS system. Also, I am governed by and work amongst people who are on the
user end of the system. It certainly is one area of the health system that causes quite a lot of
grief. While I think that there are lots of things that are terrific about the system, that work and
support people to access services, there are certainly some major gaps that make it very difficult,
particularly for Aboriginal people coming from very remote places such as the Kimberley. I am
very pleased to have the opportunity to speak with you today.

  CHAIR—Fantastic. Thank you very much for that; that was succinct, and you have also given
us a very good submission, so there is lots of material there for us to look at. I would like to
touch first of all on the question of the fuel subsidy. You say that the PATS should more than
simply subsidise the cost of fuel; it should actually fully meet the cost of fuel. Would you accept
that, if the PATS transfers from being a subsidy scheme to being a reimbursement scheme, some
form of means testing is appropriate as part of that change?

  Dr Nelson—Yes, I think that is reasonable.

  CHAIR—Do you have any idea what proportion of the patients who might use a scheme like
that would be people who would need subsidy or reimbursement by virtue of having a lower
economic capacity to pay for those services?

  Dr Nelson—Looking at where the patients are around the Kimberley who would need to use
fuel to get somewhere where there might be a service that is taxable, they are largely people
coming from remote communities. If you are living in one of the town communities then
generally you fly if you need to access a PATS service. For the clientele of the community
controlled services in the region, certainly the vast majority—I will make a stab—90 per cent,
perhaps, would be eligible for a full reimbursement if it were to be means tested. Certainly there
would be very few Aboriginal people living in remote communities who would not be eligible
under that sort of arrangement.

  CHAIR—I would like to ask you to describe briefly the kinds of distance problems that you
experience in the Kimberley. I am not at all familiar with that part of Western Australia. What

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kinds of typical journeys that need to be undertaken does PATS deal with? Do you have you any
capacity to estimate for us the proportion of the costs incurred by people on such trips that is
actually met by PATS?

   Dr Nelson—I will give you an example. One of the regions that we have had the most
difficulty with in terms of PATS meeting the needs of people is Katjungka, the area that has
communities such as those Balgo, Mullen and Billiluna. There are certainly others that have
enormous distance and isolation problems as well but I think this is quite a good example of the
real difficulties. Balgo, for instance, is down the Tanami Track. It is about a three-hour drive
from Halls Creek. For patients who, for instance, need to access eye surgery there are theatre
lists that take place in Kununurra, so patients have to get from Balgo to Halls Creek. There is no
public transport so not infrequently that has meant that our clinic staff have needed to drive
patients to Halls Creek. Sometimes we are able to tap into a community vehicle that is heading
that way, but it is often drawn on clinic resources because there are not a lot of available
community vehicles. Very few people have private vehicles.

   Fuel in Balgo is around $2.50c a litre. It is a trip along a bumpy dirt road with very expensive
fuel prices. Once they get to Halls Creek, they still have to make it to Kununurra, which is a bus
ride. The bus leaves in the wee hours of the morning, so patients have to do something with
themselves until they can catch a bus at around 3.30 in the morning. Once they have got to
Kununurra, they then have to do the same on the way back. It is a pretty complicated travel
arrangement. Going to Perth is even more tricky. It is about the cost and the logistics of finding a
means to actually get people from A to B.

   We have been able to get approval for charters sometimes, particularly in the wet season. We
have been able to get approval to charter patients from Balgo right through to Kununurra, which
is obviously an infinitely better option. One of the things that I have written in the submission is
that some flexibility to be able to use those means of transport where there really are very few
alternatives makes everybody’s life a whole lot easier.

  CHAIR—I have one last question. Does the AMA or the local division of general practice
supply information to doctors in that region about PATS or is information about PATS pretty
well entirely the responsibility of the Western Australia Department of Health?

   Dr Nelson—In the nine years or so that I have been up here I have not been aware of any
information coming through the AMA or the Division of General Practice. Most of the
information comes through health department routes. I think that is a really good point, because
health providers having a good understanding of the system goes a long way to helping it work a
little bit better. At the moment we are very reliant on PATS clerks being on the ball and knowing
everything that is available and making that available to patients. This is not to blame PATS
clerks at all, but they have tended to be in fairly junior positions. Quite often they are part-time
and they are not necessarily people who have a great capacity to do lots of lateral thinking. They
might not necessarily be people who feel the need to advocate very strongly on the part of the
patient. For health providers to have a good understanding of what they can be advocating for is
obviously really important.

  CHAIR—Thank you very much.


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  Senator ADAMS—Thank you, Dr Nelson. I am from Kojonup, right down in the southern
area of Western Australia, but I have spent quite a lot of time up in the Kimberley. Whereabouts
are you based?

  Dr Nelson—I am based in Broome.

  Senator ADAMS—Do you have many patients that have to access a specialist in Darwin?

  Dr Nelson—Very few. We would love it if there were more opportunities for people to access
specialists in Darwin, but the cross-border arrangement is not a standard route for referral. Even
for people living in Kununurra, which is not very far from Darwin at all, generally the referral
route is to somewhere else—Broome, for instance, or down to Perth.

  Senator ADAMS—Have you had anyone who you have been trying to get to Darwin?

  Dr Nelson—Occasionally we have tried. I worked at the Aboriginal health service in Derby
for six years. I can recall while I was there trying to get somebody there. It is generally not easily
done, and I think that people do not try too often for that reason. There are arrangements under
way and have been for a long time now. We keep hearing it is just about to be signed, and I
gather it is still just about to be signed. WA is purchasing six beds in the Royal Darwin Hospital
so that the route across the border will be made straightforward for evacuations. But I am not
aware that a similar sort of arrangement is being set up for specialist arrangements that are not
emergencies.

   Senator ADAMS—We had the department here this morning giving evidence. They said that
they have a different scheme for their interstate travel for specialist treatment. You might like to
have a look at that. It does not come under PATS, but it is a similar scheme to PATS, for people
to travel for specialist treatment.

  Dr Nelson—That is certainly very helpful to know. Even DOCS in Kununurra has not had an
easy time trying to get people to Darwin. It obviously makes a lot more sense for a whole range
of reasons. That is very good to know; thank you.

   Senator ADAMS—Regarding the issue with some of the roads up there, you can drive 100
kilometres on a bitumen road and get there in a certain time and that is no problem, but to drive
even 75 kilometres on some of the roads can take a considerable amount of time. Have you tried
to get PATS for some of the people who are just under the 100-kilometre boundary?

  Dr Nelson—I could not speak from personal experience of that. I cannot think of one in
particular from personal experience.

  Senator ADAMS—This committee did a petrol-sniffing inquiry in Balgo late last year. On the
escort side of things, are people being flown out able to have an escort to go with them?

  Dr Nelson—It is no mean feat. The problem is that the guidelines around escorts are fairly
restrictive. I will come back to a general point about Balgo in just a moment, but as a general
rule providers in the region find that getting escorts where the provider and certainly patients and
family feel it is appropriate is not infrequently knocked back. Some very vigorous battling will

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occasionally score an escort and there will be other times when it does not. It is an enormous
problem.

  There was a point in Balgo where we had lots of community members approaching Palyalatju,
which is the local community controlled health service that provides non-clinical services in the
Katjungka. Basically they had committee members and members of the community saying that
they were just not going to travel any more. They have had so many experiences of people who
are very physiologically old, if not chronologically old, frail, blind in one eye, do not speak
English, all sorts of things, who have ended up getting sent on their own because they were
deemed not suitable for an escort by a distant PATS clerk who had nothing to do with them
really. It is a terrible experience.

  Last week I caught a plane to Perth and happened to be on the plane with two women from
remote communities in the Fitzroy Valley. One was blind in one eye. She was actually going
down for an eye operation. She had been to Perth once before but never on her own. She had
absolutely no idea, none whatsoever. There was some paperwork in the bottom of her bag that
took me scrambling round in the bag to find it. She did not really realise it was there. She had no
idea where she was going and no idea how to catch a taxi. That is not an uncommon story. I do
not know the specifics. I do not know if they had applied for an escort and been knocked back,
but people in that sort of situation travelling without escorts is really commonplace. I think it is
really a disgraceful way to treat people.

  Senator ADAMS—I note that you have mentioned the meet-and-greet team in Perth. We have
certainly had evidence from the department about that today. Have you any comments on how
that is working?

  Dr Nelson—Yes. In fact, I just had an email today from one of our renal support nurses who
works over in the east Kimberley who sent a message through saying that they just wanted to
extol the virtues of the meet-and-greet team and say what a great job they are doing. Hopefully
everybody knows about them and please send this round and let everyone know in case they do
not.

   Generally, the feedback has been great. It is a really good addition to the service. The
downside is that a number of people have said that it is fine so long as you arrive during daylight
hours, but if you arrive after hours, the service is not available. I guess the service has limited
capacity as well. The type of service is great and very well received and the general feedback is
to have more of it including out of hours.

  Senator ADAMS—We have heard that the meet-and-greet team will collect the patient from
the airport in office hours and take them to their accommodation. After that, are you aware
whether they act as a liaison person and make sure that the patient gets to their appointment and
back and all the other issues that would go with it?

  Dr Nelson—For instance, with these women whom I ended up helping into their taxies and
off to their hostels, on the envelope it has the name of a contact person through the meet-and-
greet team and it says to call them if they have any problems. It is fine if you know to call them,
know how to use a telephone and are clued up to what is written on the front of your envelope.


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The particular people in the team I know have been very helpful. Where they are notified and put
on the alert to help out, they generally have been really helpful.

  Senator ADAMS—Getting back to the role of the PATS clerk and the administration side. If
the GP has actually asked that they have an escort and then they are denied an escort, how are
you dealing with those sorts of situations?

   Dr Nelson—The general message that I give GPs is to say, ‘If you get a knock-back, go
directly to the regional director, put the argument and argue for a special case.’ The point is, No.
1, that very often I come across a situation where someone just has not really known that that is
something they can do. We do not have a huge turnover of staff, but we do have staff turnover.
We have lots of overseas trained doctors now making up our GP workforce. We have a
reasonably high proportion of people who at various times are not familiar with the system and
take some time getting to know it. They are probably less well placed to be advocating, often
just because they do not know that they can. My approach would always be, if I feel someone
needs an escort and I get a knock-back, to take it to the regional director and argue the case. I
can be reasonably persistent and pushy, so that has often been a fruitful exercise.

  The point there is that if the criteria were broadened and it was seen as something that really
should be almost accepted practice for most Aboriginal people, particularly those living in more
remote communities, it would save everybody a lot of time and humbug really. I am sure the
regional director does not want to be rung by people like me all the time nagging about getting
escorts approved. I think for a lot of people it is just not knowing that that might be an avenue
they can take in a situation where they do not feel that a patient would be safe if they travelled
alone.

   Senator ADAMS—I would like to continue with that. We were in Alice Springs last week,
and there was the role of a liaison person especially for indigenous people. So when they arrived
at the hospital that person spoke to people in the community and made sure that they were on the
bush bus or however they were going to get from A to B. Then they were taken care of right
throughout going to the specialist and any other treatment they had to have. The liaison person
then made sure that they were back on the bus and got to wherever they had to go. Knowing
about Halls Creek and the time the bus gets in, especially going back to the Balgo people, how
do you determine that those people are going to be picked up, are definitely going to have a roof
over their head when they arrive in the early hours of the morning, and are not going to get
themselves lost in the system?

   Dr Nelson—Exactly. You cannot. Having a meet-and-greet team and a liaison officer at the
hospital down in Perth would be helpful, but the problem is that it is an enormously long route
from Balgo down to Perth and back again. What happens is that people get stuck. This is the
main reason that people in Balgo were saying, ‘We’re just not going to travel again.’ Time after
time they saw relatives who would end up in Halls Creek and not have a means of getting back.
The health department line—and this has been stated in a public place, a big meeting with lots of
people—has been, ‘Our responsibility is to get people basically to the end of public transport and
then it is not our responsibility after that.’ That has been a not uncommon attitude in practice. So,
terrific, people get as far as Halls Creek and then have to wait until they stumble over a relative
who is driving back, happen to hear about a clinic vehicle coming in or whatever.



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   One of the problems is that—also not infrequently—people might get discharged from Perth
and the community clinic knows nothing about it. They have no idea they are coming home so
they do not actually know to look out for them. When someone gets stuck in Halls Creek, not
infrequently they will camp out in the dinner camp, out in the open—which is pretty chilly in
wintertime—end up on the grog, not have much money for food and return in a dreadful state.
That has not been uncommon.

  In the Katjungka, because it is one of those places that had the extreme end of PATS disasters,
we have accumulated a gigantic list of absolute disasters, including somebody ending up
completely blind. He returned from Perth but no-one knew he was being discharged. He had
ocular antibiotic medication that he was instructed to take, but he did not understand the
instructions. He lost the medication on the way home. He ended up getting stuck in Halls Creek,
but nobody knew that he was there so nobody knew to be looking out for him. He ended up with
a very severe infection in the eye and lost the eye. That is just one particular tale of extreme
disaster, but we had many disasters.

   The final straw was having a PATS clerk declare that she was not going to book people. She
said she knew they would not travel anyway, because one was an alcoholic and another one was
something else, so she was just not going to make any bookings. We took the matter to the health
department and said that we could not deal with it anymore and that something had to change.
We said that we were happy to take over the management of the PATS arrangements because we
felt that at least our staff on the ground could advocate well for people. We said that we would be
able to make sure that they could get into a vehicle to get out of Balgo and that, hopefully, we
would have some more vested interest in getting them from A to B and so on. So we now run the
PATS for that area. Basically all the bookings are done through our clinic manager. We then pass
the bill on to the health department at the end of the month, so we carry the cost for a month. It is
not without some risk to our organisation, with no extra money to run the service, I might add. A
large amount of our clinic manager time has been put in to organising people to travel.

  In the first quarter that we ran it, we travelled as many people as had travelled in the previous
12 months. Whereas previously a lot of people had, for a whole range of reasons, not attended,
missed travel or whatever, in the nine months since we took it over, we have probably had only
three or four patients who have not attended. The rest have been successfully travelled. That
comes back to the point about the importance you place on the position of PATS clerk and the
need to really make sure that people who are responsible for managing PATS arrangements are
skilled and experienced and have a level of commitment to producing good outcomes.

  Senator ADAMS—Thank you for that.

  CHAIR—We have run out of time, Dr Nelson. It is obviously a nice day up in the Kimberley
there. We can hear birds in the background. Are those aeroplanes that we can hear?

  Dr Nelson—Yes, there are aeroplanes flying overhead.

  CHAIR—It is obviously a nice enough day to be outside. I am not sure that it is quite as good
as that in Perth.

  Dr Nelson—You can always go inside.

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  CHAIR—Thank you very much for the time you have spent with us today giving evidence
and for the quite comprehensive submission from the Kimberley Aboriginal Health Planning
Forum.

  Dr Nelson—It is my pleasure; thank you for your time.




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[4.14 pm]

EDMONDS, Mrs Julie, National Manager, Transplant Housing and Live Organ Donation,
Kidney Health Australia

   CHAIR—Welcome. Thank you very much for hanging around for a while. You have had a
chance to hear some of the other evidence, so you have some idea of what is being said
elsewhere in the inquiry. We understanding you come from Kidney Health Australia and that you
are able to give us some information about the FAITH project—Family Accommodation
Initiative-Transplant Housing. You have had information provided to you on parliamentary
privilege and the protection of witnesses and evidence.

  Mrs Edmonds—Yes.

   CHAIR—Great. We have a submission from Kidney Health Australia and we heard from
Kidney Health Australia in Canberra. But, as I said, this opportunity today is to get some
information about the FAITH project. Would you explain to the Commonwealth how that works?
When you have finished, we will ask you some questions about the project.

  Mrs Edmonds—Sure. I was not really clear on what I was to present today. I knew it was on
FAITH, but was not clear what your expectations were, so I prepared a summary that I thought I
could read to you. First, let me introduce myself. I live in Perth and I have worked as a volunteer
with Kidney Health Australia for many years. In 2004 I became the living donor representative
of the Kidney Health Australia Consumer Participation Committee. I am a living donor myself,
having given my sister Susan a kidney in 1980. I now work for Kidney Health Australia, as you
heard when I introduced myself.

   It came to my attention in 2004 in my living donor representative role that rural families
travelling to Perth for their donor transplant surgery faced financial and emotional burdens. A
living donor is not entitled to PATS, as they are not considered to be sick. For families
experiencing kidney disease and considering living donor transplant surgery, the added burden of
finding appropriate city based accommodation for three months and the associated financial
pressures can be overwhelming. Families moving to Perth for any transplant surgery often have
to pay mortgages or rental on their rural family home, and in many cases these people are not
receiving full wages due to their inability to work.

   Some families make inappropriate accommodation choices by resorting to caravan park or
boarding house accommodation for their transplant period. As a result, they risk their health in
shared facilities. Transplant recipients are immune compromised due to drugs taken for
antirejection. Living kidney transplants are critical to the survival of countless kidney sufferers
because of the inadequate supply of deceased organs. While there are many important issues for
all potential donors, they are particularly critical for those based in rural and regional Western
Australia. As kidney transplants are only undertaken in city based hospitals, rural and regional
families across Western Australia have no choice but to travel to Perth for transplant operations
and to find suitable and affordable accommodation for a minimum of three months.


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   I have worked from 2004 on this issue and, since that time, have charted the course of many
Western Australian rural families involved in living donation and experienced firsthand the
barriers they have encountered. One rural Western Australia mother to son donation saw a family
living in a campervan for the duration. Other families had children split up amongst friends. I
watched resentment flourishing between siblings and homes being mortgaged to pay travel and
accommodation costs—in one instance, this cost a family $20,000. I watched as financial and
emotional stress led to the breakdown of one family.

   I watched and listened to many families in despair. One mother told of when they moved to
the city for their child’s transplant. The family could not afford for all members to get on the bus
together to go to the hospital. To help overcome this situation, I spent two years researching and
developing a program to fit the identified needs of our rural community with chronic kidney
disease. In 2005 I approached our Department of Housing and Works in Western Australia with
much evidence of this need. In early 2006 the department purchased two homes for Kidney
Health Australia under their CAP scheme, which is their crisis accommodation program for
living donor families from rural and remote areas.

  I secured a Lotterywest grant to fit out these homes. The properties are managed by Kidney
Health Australia, and are modern, fully furnished, three-bedroom, two-bathroom homes
including air conditioning and all homewares. Named Hayward and Hutchison after two WA
nephrologists, the properties are the first in what is now hoped to be a national roll out of crisis
accommodation for this often overlooked segment of the community. I named the project
FAITH, which is an acronym for Family Accommodation Initiative Transplant Housing. The
project was launched in September 2006 by the minister for housing and Kidney Health
Australia.

  FAITH broke new ground, as never before has such accommodation been provided for living
donors and their families. FAITH demonstrates better use of government funds. It costs the
government $72,000 per year for each person on dialysis. A kidney transplant saves the
government $60,000 per person per year for the life of the transplant. So families who in the past
could not consider a living donation due to the costs associated can now reconsider. A living
donor who gives her loved one a kidney not only saves our government this money but also
improves the chances of those still on the waiting list for a deceased kidney.

   FAITH is flexible. As we are not tenanted with the living donor families, the accommodation
is offered to all transplant recipients who are required to travel to Perth with their family at only
an hour’s notice. FAITH supports families in regional and rural Western Australian communities
and is 100 per cent client focused. It is about making life easier for the donor and family
members. It is about keeping families together, meeting their needs, providing first-class support
and achieving successful outcomes for all parties affected by living organ transplant surgery.

  Within this first year of FAITH being established in WA, approximately 450 nights of
accommodation have been provided to nine rural WA families at no cost to these families.
Support from Kidney Health Australia staff and an established network of volunteers ensures
these families have the ability to be independent and feel secure. Among the living donation
families we have had in FAITH in this past year has been a Melbourne sister who has come to
give her Esperance brother a donation. We have had two Geraldton mother-to-son donations, a



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Bunbury father-to-son donation, an Albany wife-to-husband donation and a Bunbury son-to-
father donation.

  We have had two country families involved in deceased donation. In deceased donation cases
timing is critical. The patient may be flown to Perth by the Royal Flying Doctor Service and the
family follow by car and arrive in Perth with no more than hastily packed suitcases and in
emotional turmoil. Everyday life stops for a family. The hope of a transplant overrules any
family commitments, as to schooling and employment, or any financial issues as one person a
week dies in Australia while waiting for a kidney transplant.

   Through my work with FAITH I have become aware of the problems facing all rural and
remote families when travelling to capital cities for heath treatment and education, no matter the
disease. I know there are difficulties with the existing Patient Assisted Travel Scheme and I am
aware that they have been raised during this inquiry. I support any improvements to PATS that
will help our rural communities. Short-term furnished accommodation in Perth and other capital
cities is increasingly difficult to find and financially prohibitive to most families. To the best of
my knowledge, lodging houses in Perth now charge in excess of the current PATS entitlement of
$35, and they charge per head no matter if a family member is entitled to the scheme or not. Our
social workers tell me that these boarding houses are full to capacity. I know FAITH is not the
full answer to this escalating problem, but it is a beginning, a beginning that has already changed
the lives of nine WA rural families this past year. Kidney Health Australia is now endeavouring
to take FAITH to all Australian states. I welcome any national support for this. I hope that gave
you a bit of an overview.

  CHAIR—It did, and congratulations on that. That must be a very important resource for
people in that position. Is it only a scheme for people with kidney transplants or are people with
other forms of transplants also eligible to access it?

   Mrs Edmonds—If it is not being utilised by a living donation, which is currently only as to
kidneys—although they are looking at doing living liver donations in New South Wales, parent
to child—and if we do not need it for a living donation, anybody who has an organ transplant I
am happy to accept phone calls from and I am happy for them to go in there. That is what it is
about. We have had people who have just come to Perth for education. We had a gentleman who
had to come up from Esperance for eight weeks to go on dialysis. He was quite disorientated and
bewildered when he was up here. They could not even get him a spot in a boarding house so we
let him in because we did have a vacancy. It is very flexible. We only have the two properties so
we have to monitor that.

  CHAIR—When last year did it start?

  Mrs Edmonds—We officially launched it on 1 September. We had an official launch with the
minister for housing. We had the first families staying at the end of July. Both properties were
full. We could not get them ready quickly enough. We had the Melbourne sister who flew over to
give her brother from Esperance a kidney. We had two families in one property. We had the
Bunbury father-to-son donation family come up and stay in the other one.

  CHAIR—How many families have been through in the last year?


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   Mrs Edmonds—Nine families. The minimum we have had someone staying there is two
weeks. What happens is unpredictable. They can come here for a living donation and the test
goes wrong at the last minute and then they have to go back. We actually had one family stay for
four months because a transplant encountered problems. We have to be fairly flexible because it
can be unpredictable. We had a sister fly over from England to give her sister here a transplant.
We at Kidney Health Australia decided that they could stay there at no charge because she was
not entitled to PATS. But that transplant was actually cancelled within five days of it all going
ahead because one of the sisters found out that she had breast cancer. That is how unpredictable
it is. Suddenly I had these people who were blocked in for three months not coming—so we
open it up and say somebody else can use it.

  CHAIR—Do you means-test or otherwise screen people who come through?

   Mrs Edmonds—People are given to us with non-identifying information, but the social
workers and the transplant nurses at the hospitals know who the people in most need are so they
contact us and tell us. We do not actually do any means testing; we just take it from them. But 90
per cent of people on dialysis have health care cards. Just for families to come here for three
months, even if they are fairly comfortably off, is a lot to do. I am not sure if we could even
afford it. To uproot the whole family and go and live in a city for three months without getting
paid normal wages but paying all the bills from the home in the country is a lot to do.

  CHAIR—Indeed. Congratulations; that is very exciting.

   Senator ADAMS—What sort of uptake do you think you are going to get from the other
states?

  Mrs Edmonds—I am very positive about it. I went to Adelaide two or three weeks ago and I
spoke to SACHA, the South Australian Community Housing Authority. I spoke to a lady there
who is the manager of community housing, and she was very positive about it. But of course she
will need to take it to her board and perhaps the minister for housing in South Australia. I am
hoping that, because it is so successful here and we have been able to help so many people, the
other states will come on board.

  Senator ADAMS—Are you getting a lot of donations from anyone?

  Mrs Edmonds—Do you mean financial?

  Senator ADAMS—Yes.

   Mrs Edmonds—No, not really. We do get donations at Kidney Health Australia but we do not
get that many specific to this project. If someone is entitled to PATS money, we sometimes, if it
is a wife to husband and the husband as the recipient is entitled—he may be entitled to $35 a
night—take that money and use it to pay our pain management company to do 24-hour
maintenance. We pay all the bills. We try to recoup. I am not sure how we will go this year.
Hopefully we will come out square at the end of the year.

  Senator ADAMS—So the actual donor is not eligible for PATS?


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  Mrs Edmonds—No. In WA there is a new scheme that has been introduced. I think that
Kidney Health Australia made a submission and that scheme could be part of that submission.
Living donors in Western Australia only can access some financial reimbursement now. It is not
through the PATS scheme; it is run differently through country health. But they are only able to
access it for, say, four or five days. After a transplant they are only considered to be not well for
maybe 10 days. I cannot remember now what it is. They can only access it for that short period
of time. But, if you have given your son a kidney, he might be here for three months. You might
not fly home after two weeks. So that is not a perfect answer to it either.

   Most of the boarding houses are now charging people more than the PATS money. I am sure
they have figured out that PATS is $35 a head, and they charge them, say, $39. People come and
say to me, ‘There’s two of us and it’s $8 a day.’ That might not seem a lot of money to some
people, but it is a lot of money to these people. That is one of the problems I see too. They also
take money off people in advance, and these people just do not have a few hundred dollars in
advance. I just take whatever they are eligible for, and I bill PATS direct in Western Australia so
I get a note from the beginning to say they will cover these people. When the people’s time is up
they go back to the country and then I invoice PATS and get whatever I am able to recoup from
them in that way. That is not easy either.

  Senator ADAMS—Do they have escorts?

  Mrs Edmonds—Some of them have escorts and some do not. It depends on whether the
doctor actually puts it on the form. I believe they should all have an escort because I have seen
people after transplants and they cannot take care of themselves. They cannot drive. Even people
who have been staying at our homes have had to call ambulances in the middle of the night.
Transplantation is not a cure; it is just a form of treatment and things do not always go that
smoothly. There are a lot of problems. That is why people need to stay for that three-month
period and they need to have someone to look after them. They cannot be by themselves in case
something happens.

 Senator ADAMS—With the PATS clerks, have you had any escorts rejected—people who
were not eligible?

   Mrs Edmonds—By the time the people are made known to me and they arrive, their forms
have already been filled out. So, if the doctor has not put down ‘escort’ or if they have not
spoken to the PATS people properly or identified that, it will not be there. I find that there is no
flexibility with the PATS. I have rung people before and they have said: ‘No, that’s all they’re
entitled to. It’s too late now; the forms are in.’ That is our loss because we can only claim a
smaller amount. But, with some of the people who come up with the PATS, the PATS clerks are
very strict and they have to have it all filled out before they come up.

  In December we had a gentleman in Melbourne who did not even know he was sick. His wife
was overseas. He went to the GP on a Friday and had blood tests done and then went home and
collapsed. The GP got the blood results back on the Monday and when he looked at them he
knew the man had complete kidney failure. The doctor could not get him on the phone so he sent
the police around to break down the door. They broke down the door, wrapped the guy in alfoil
and flew him up here by the flying doctor service. They told him he only had hours to live and
his wife flew back from England on a mercy flight. There is no way these people can fill out

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PATS forms if they do not even know they are sick. With this particular family, the wife is about
to give him a kidney and they will be staying in our accommodation. I feel that there should be
more flexibility in circumstances like that.

   I have also had people come up and say: ‘I ran to the PATS office on Friday afternoon and
there was a sign up saying that they were closed until Monday. But I could not wait until
Monday because I have to have my test done on Monday morning up here in Esperance.’ People
get upset. They are already in an emotional state. They get upset and really stressed. That is why
I always say to them: ‘It does not matter; just bring what you can. We are not going to take any
extra money off you or anything like that.’ But that is because we are a charity and are able to do
that. I know that some of the boarding houses and other places do not really care whether you
have your forms filled out properly or not. You just have to pay the money and worry about it
later.

   I have had people who did not fill out the forms out properly, such as one Bunbury family.
When I went to claim, they had not filled them out properly but I did not know. The time had
gone past; you are only allowed so many weeks to claim. It has all been a learning curve for me.
It was a father to son transplant where the son and the father had become really sick and they
both ended up in hospital. One was in hospital in Bunbury or Busselton and one was up here. I
managed to get the wife and the mother on the phone and she was just distraught, so I just had to
say, ‘Don’t worry about it. We just won’t do it.’ But there is no other accommodation in Perth
that would do that and this family was in a terrible state. Because of the state they are in, they
just do not think. They do not fill out the forms properly. I am not sure how we can get around
that problem.

  Senator ADAMS—Are you aware of the appeals process that they have?

  Mrs Edmonds—I am not fully aware. I should probably make myself aware of that.

  Senator ADAMS—This booklet I have has just appeared. Have you seen this?

  Mrs Edmonds—No.

  Senator ADAMS—I think we might have to advertise it, but this has been done by the
department in 2007. It does actually mention who you appeal to and how you go about it.

  Mrs Edmonds—I would quite like to look at that. I will have to get one.

  Senator ADAMS—It has just arrived. Getting back to the donor, I would think that the donor
would surely have to go to a specialist to start with to have all the tests to see that they are
compatible.

  Mrs Edmonds—They do.

  Senator ADAMS—Can they get PATS for that?

  Mrs Edmonds—No, they cannot get PATS for that because they are not considered sick. They
are up here doing what would be considered elective healthcare. But we now have a scheme in

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Western Australia where the donor can get their travel and accommodation through Country
Health. I am on a national committee at the moment with the transplant nurses from each
Australian state. Roche is funding it for them, and I have come on board as a guest, I suppose
you could say. We are gathering information nationally so we can bring this same scheme into
each state. I do not know if that scheme is the total answer, but it is something.

 Senator ADAMS—As far as the other states are concerned, where did the land in Western
Australia come from?

  Mrs Edmonds—The homes were spot purchased, so I had to go through quite a lot to get the
funding. The Department of Housing and Works obviously still own the two homes, but when
the funding came through they allocated to spot purchase two properties. The properties
fortunately just happened to go on the market at about that time. They are on the same block in
Morley, but they are not attached and they are the same size as homes. So their being together
has worked out perfectly because we have had country families being able to support each other.

  When one family arrives, I introduce them to the other and they tell them the quickest way to
get to the hospital and where the nearest chemist is. That has been very fortuitous and has
worked out fantastically. The department did not buy any land. They paid $787,000 for the two
properties when they bought them. That would have gone up quite a bit now because Perth
prices have. As I mentioned, it is $72,000 a year for someone on dialysis, and a living donor
saves $60,000 a year. If that transplant lasts 10 years, that is $600,000.

   We have a family down in the south-west at the moment that the hospital has told me about
who looked into a living donation quite some time ago. They would have had to sell their home
to be able to come up here for the wife to give the husband a kidney and for them to have three
or four months off. And if anything goes wrong it can work out to be longer. So they backed
away and now they are now going to restart and do that because I said they could definitely
come and stay here. So that is one that would not have even been able to go ahead. Not only will
they save the government that money—which, in my mind, recoups that investment that the
Department of Housing and Works made—but the list will not be so long. One more person will
come off it, and that will mean that other people have a better chance.

  Also, when people receive their transplant and things work well, they go back to work and
they start paying tax again. So I think that living donors save an enormous amount of money. I
am very hopeful that the other states will see it the same way and will make an investment in it
too, but I am not sure about how each one will. They may have properties on their books that
they are willing to let us have to manage or they may spot purchase as we did in Perth.

  Senator ADAMS—Are you looking at expanding Perth?

  Mrs Edmonds—I think we need to. I believe we need another property, perhaps around
Fremantle. When the funding came through for here, property prices had gone up so much in
Perth that it was impossible to get anything right near the hospitals. In the beginning we were
hoping for near Nedlands and the Royal Perth Hospital. That choice just had to be made.
Otherwise I would have only got one home. But there are quite a few people in Fremantle for
whom it would take at least 40 minutes to drive there and back. We have a Fremantle family who
have been to that hospital, and they have been willing to do that just to get the accommodation.

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But if we could get something in Fremantle, that would be really good. We would then have all
the hospitals for transplants covered.

  CHAIR—Thank you so much. Congratulations on that, and I hope it is a great success.

  Mrs Edmonds—Thank you.

                             Committee adjourned at 4.37 pm




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