CENTRAL AND NORTH WEST LONDON by JKqlzrL

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									                                                                          CNWL 113A/2006

                 CENTRAL AND NORTH WEST LONDON
                    MENTAL HEALTH NHS TRUST

               Trust Board Meeting – 27 September 2006

                               PALS Annual Report

                                                                            For Discussion



Executive Summary:

1.      This report looks at the performance of the Trust’s Patient Advice & Liaison Service
over its third year of operation, July 2005 to June 2006.

2.     The Trust received 482 enquiries during this year, a 12% increase on last year. This
compares quite well with other London mental health PALS services that have an
establishment of only 1 full-time paid PALS post. Having previously used PALS, or having
been directed to us by other PALS services, appear to be the main reasons for
approaching the service. This suggests that more work can be done on our publicity on
Trust sites.

3.     The people who are most likely to come to the service are relatives of patients,
followed by service users in the community.

4.     Westminster continues to generate by far the most PALS enquiries, and the report
contains some discussion as to why this might be.

5.       The proportion of PALS enquiries which are about problems with services continues
to fall, while use of PALS for seeking information, advice, or work placements is rising. A
number of people have also approached the service to make positive comments.

6.     There is discussion in the report of the kinds of problems raised with the service,
and some brief examples of these are given. Some potential lessons for the Trust from the
year’s PALS enquiries are suggested in Section 12.

7.     The results of the PALS User Satisfaction Survey are discussed in Section 14.
These indicate possible lessons about the quality of service that PALS needs to be aiming
at, and about changes needed to the questionnaire itself.

8.     Progress on the plans for PALS’ third year are discussed (Section 15), together with
other developments through the last year (Section 16). Finally, some areas of work for the
service’s fourth year are suggested (Section 17).




                                             1
                                                                                                                       CNWL 113A/2006
Introduction

The aim of CNWL’s Patient Advice & Liaison Service is to help make Trust services as
accessible, welcoming and responsive as possible. The service is a means of learning
from the experience of those using our services (both “patients” and their relatives), in
order to improve their experience in the future. The tasks given to PALS by Government in
2002, were to
    Provide information on local health services
    Put people in contact with sources of support
    Help to quickly resolve problems with service delivery
    Advise people on the formal complaints procedure
    Pass on suggestions for improvement
    Act as an “early warning system” by informing the Trust Board and Clinical
       Governance groups of trends in enquiries and gaps in service highlighted
    Help the NHS to develop a more responsive culture, with the aim of making the
       patient central to service provision and decision-making, rather than marginal to it.

The idea of a Patient Advice & Liaison Service was essentially part of the Government’s
response to the Kennedy Report (1998) into the problems at Bristol Royal Infirmary. The
service was established within CNWL on 1 July 2003, and this is why its “Year” currently
runs from July to June.


1.         Number of PALS Enquiries through the Year

The Trust’s PALS service received 482 recorded enquiries during the period July 2005 to
June 2006, compared with 430 in the year 2004-05 and 320 during the previous year.
Thus there has been a small (12%) increase in recorded enquiries over the last year.

If we compare activity on a month-by-month basis over the past three years, we see that
numbers of recorded enquiries were higher than in 2004-05 for most months, but not for
December, January, February, or April.


                                   PALS Enquiries by Month 2003-4, 2004-5 and 2005-6

     60
     50
     40                                                                                                                      2003-2004
     30                                                                                                                      2004-2005
     20                                                                                                                      2005-2006
     10
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The highest number of monthly enquiries this year came in September, with 55 (compared
to February of 2004-5, with 50, and July of 2003-4, with 38).


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                                                                                     CNWL 113A/2006
153 of the last year’s enquiries related to in-patient services and 329 to community
services.


2.      Comparison with Other London Mental Health Trusts

Trust            Population        PALS model           Number PALS         Number            Period
                                                        WTE’s in            Enquiries
                                                        Establishment
Camden &         360,9001          Phone-               1½                  292               April -
Islington                          based, with                              recorded2         March
Care Trust                         outreach

Central &        1.7m3             “Hub &               1                   482               July –
North West                         spoke” using                                               June
London                             link workers
East             645,000           Phone                1                   324               April -
London &                           based, with                                                March
the City                           drop-in and
MHT                                some
                                   outreach
Hillingdon       250,000, plus     Phone-based          2.5 (4 staff)       164               April-
PCT              transient                              covering all PCT                      March
(mental          population                             services
health           around
services, to     Heathrow
31.3.05)
North East       850,000           Phone                1                   162               April -
London                             service                                                    March
Mental
Health Trust
Oxleas           638,0004          Phone-               2.75                648               April -
                                   based, with                                                March
                                   outreach
South            1.09m             Phone-based          2.8 (4 staff)       1,470             July -June
London &
Maudsley
West           691,8005 plus Developing       Staffing           Unable to
London         national       volunteer-      problems:          provide
               forensic       based           unable to
               services                       provide
Note: no information obtainable from Barnet, Enfield & Haringey, or South West London &
St George’s Mental Health Trusts.
Table 1: Populations served, size & model of PALS teams, and numbers of enquiries in a sample of London
mental health trusts.



1
  Taken from PCT and Local Authority figures for Camden & Islington.
2
  a problem with under-recording was reported.
3
  This includes a combined population of 691,800 in three London Boroughs in which the Trust provides
substance misuse services only (Ealing – 303,000; Hammersmith & Fulham – 176,000; and Hounslow – 212,300).
4
  Taken from Local Authority figures and 2001 Census data.
5
  taken from local authority figures – 2004 estimates.

                                                    3
                                                                                                 CNWL 113A/2006
This indicates that our service has a relatively high number of enquiries per Whole Time
Equivalent in the PALS service – our capacity is of course, greatly enlarged by the work of
the 75 link workers who deliver the bulk of the service. On the other hand, among the
Trusts for which we have data, we have a relatively low use of PALS for the size of
population that we cover.

There has been interest in the Freephone line used by South London & the Maudsley, and
whether this explains the high use of their service. Their PALS manager’s view is that the
use of their service owes more to
    An established culture of user involvement and advocacy, so that staff are
       accustomed to liaising with third parties
    A network of nurse advisors and matrons, who appear to encourage the use of
       PALS
    A “no blame” policy that has resulted in a staff culture of admitting mistakes and
       actively seeking solutions
    The fact that the Maudsley is widely known, so their PALS service receives general
       requests for information from around the world
    Related to this, the high expectations that the Maudsley’s reputation engenders,
       which could help explain both a high rate of complaints and a high usage of PALS
       for the Trust.

SLaM uses a Freephone system in which they pay the cost of each incoming call, plus a
very small surcharge per call. 989 of their 1,470 enquiries (or 67%) came through this line.
Westminster Primary Care Trust also uses a Freephone line, and they report that for the
three months January to April 2006, the cost of this was a £48 standing charge plus £200
for 560 calls6. And BT advertise a £10 monthly standing charge plus the cost of incoming
calls for their Freephone lines for small and medium businesses.

So the costs of a Freephone line in itself, are far from prohibitive. However, a Freephone
line does assume a central, phone-based PALS service. The model the Trust has adopted
of course, is a more decentralised “hub and spoke” one. Adopting a Freephone number
would encourage a shift away from contacting our 75 local link workers, towards phoning
the PALS manager at Trust Headquarters.




6
    Primary Care Trust PALS tend to be heavily used as they receive questions about GP and Dentist’s lists.

                                                             4
                                                                           CNWL 113A/2006
3.        Sources of “Referrals” to PALS

The figures for this year indicate that a very large number of people came to PALS
because they had previously done so.


                        Source of Referrals to PALS 2005-2006

                           MP
     Awareness Raising Meeting
                    NHS Direct
                  Trust website
                  Voluntary org
                  Statutory org
                          Staff
          Previously used PALS
                          PPIF
                 Other website
                  Other source
              Other link worker
                   Other PALS
                 Leaflet/poster
                         ICAS
              User/Carer Group
                        Friend
                    Complaints
                    Advocates


                                  0            20           40   60   80    100        120


Numbers of referrals from other PALS services have also increased. On the other hand,
far fewer people appear to have come to PALS this year as a result of leaflets or posters,
and there have been drops in numbers of people coming from most other sources.
However, the PALS satisfaction survey (Section 14) sheds a slightly different light on this.

Sources of Referrals to PALS 2005-06, compared with 2004-05:

                                  2004-        2005-
                                  2005         2006
Advocates                                 12            7
Complaints                                11            9
Friend                                     7            4
User/Carer Group                          15            8
ICAS                                       5            0
Leaflet/poster                            54           20
Other PALS                                41           75
Other link worker                          4            6

                                                            5
                                                                                                                                                            CNWL 113A/2006
Other source                                               22                   19
Other website                                              52                   56
PPIF                                                        1                    0
Previously used PALS                                       54                  104
Staff                                                      26                   30
Statutory org                                               4                   16
Voluntary org                                               7                   13
Trust website                                              22                   19
NHS Direct                                                  0                    2
Awareness Raising Meeting                                   0                    4
MP                                                          0                    1
Total                                                     337                  393

These figures however are flawed because they only represent 80% of the PALS enquiries
for the year. This indicates that there is scope for improving our collection of this
information from people making enquiries.


4.          Who is Coming to PALS?

The largest single group of people bringing issues to PALS was relatives of service
users, who brought 121 of the 482 enquiries (25.1%). Then came service users in the
community, with 112 enquiries (23.2%). Members of the public brought 75 issues, or
15.6% of the total. In-patients brought a relatively small 39, or 8.1%. This is thought to be
because other means of seeking information and resolving problems are readily available
to in-patients in the form of ward staff and advocates. Primary care staff brought 20
enquiries (4%), other mental health professionals brought 18 (3.7%), and friends of
service users brought 13 enquiries (2.7%).


                                                 Who Made PALS Enquiries, 2005/06

     140
     120
     100
      80
      60
      40
      20
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                                                                                          6
                                                                                               CNWL 113A/2006
5.       Enquiries by Directorate

Last year, Westminster was the subject of the highest number of enquiries, with 136, or
31% of the total, and the Horton Haven had the fewest, with none. This year, 157 of the
enquiries (or 32%) were about Westminster, while the Horton Haven again had no PALS
enquiries.


                               PALS Enquiries by Directorate 2005-2006


                     Corporate
                        8%                                                    Harrow
                                          Hillingdon               Brent
                                    Other                                      5%
                                               6%                  11%
                                    15%                                             Kensington &
              Horton Haven
                   0%                                                                 Chelsea
    Eating Disorders                                                                   13%
           0%

         Substance Misuse                                         Westminster
               1%                                                    32%
                                            CAMHS
                          Older Adults       2%
                              7%

The percentage of enquiries concerning Harrow has fallen from 16% in 2004/05, to 5% in
this last year. This may well reflect the fact that two link workers have had to withdraw due
to other work pressures, one link worker was relocated so she was no longer physically
present at the main site she covered, and there were problems with publicity for a number
of the other workers.

Hillingdon Adult Services, Older Adult services, and Substance Misuse Services have
been part of the Trust since 1st April this year. Until the end of June, pending the
identification and training of nine new link workers to cover the borough, the PALS service
there was delivered on a transitional basis: the PALS manager, and one staff member who
had received our PALS training and previously performed a PALS/Complaints role for
Hillingdon PCT covered the area.

In the three months April to June, Hillingdon Adult Services generated more PALS
enquiries (at 29) than Harrow did in the entire year (with 26). This does however reflect an
historically high use of PALS. This arises from when Hillingdon mental health services
were run by the Primary Care Trust, which has a large and very well-established PALS
service (see Table 1).7




7
 In addition, early indications are that recorded use of PALS within Hillingdon Adult Services has reduced since 1 July
2006.

                                                           7
                                                                            CNWL 113A/2006

2005-2006                    TOTAL
Brent                              52
Harrow                             25
Kensington & Chelsea               62
Westminster                       157
CAMHS                               9
Older Adults                       33
Substance Misuse                    4
Eating Disorders                    2
Horton Haven                        0
Corporate                          38
Other                              71
Hillingdon (April-June only)       29
TOTAL                             482
Table 2: numbers of enquiry by Directorate, 2005-06



6.         Why Does Westminster Get So Many Enquiries?

Some possible hypotheses are looked at below:

6.1   Because Westminster has more service users?
On 31st March 2006, caseload numbers for Adult Directorates were:
      Brent                    3825
      Harrow                   3727
      Westminster              4387
      Kensington & Chelsea     2964
      Hillingdon               not part of Trust on this date.

So Westminster caseload numbers are 14.6% greater than Brent’s, 17.7% greater than
Harrow’s, and 48% greater than Kensington and Chelsea’s. But the differences in numbers
of PALS enquiries are considerably greater than these.

6.2    Because Westminster has more In-Patient Beds?
Westminster does indeed have more in-patient beds than other Adult Directorates, with
134 beds as opposed to 95 in Brent, 70 in Harrow, and 75 in Kensington & Chelsea8. This
could tend to increase the number of enquiries from Westminster.

In addition, the rate of enquiries from the in-patient units per in-patient bed over the year,
is roughly equivalent between Brent and Westminster, at 0.3 to 0.32 per bed. This means
that Westminster’s greater number of inpatient beds might be assumed to account for the
difference of 13 inpatient enquiries between Brent and Westminster.

6.3    Because Westminster has more Link Workers?
Numbers of link workers between the Adult Directorates at the end of this period are as
follows:
          Brent                           9
          Harrow                          6
          Hillingdon                      1
          Kensington & Chelsea          10

8
    Bed numbers are for acute admission plus PICU beds.

                                                          8
                                                                                   CNWL 113A/2006
           Westminster                    12
This might lead us to expect Westminster to receive twice as many enquiries as Harrow -
but on this basis, numbers of enquiries coming from Brent and Kensington & Chelsea
would be similar to those in Westminster, and they are not.

6.4   Because Westminster link workers are more active?
Numbers of link workers in each Adult Directorate who actually dealt with a recorded PALS
enquiry in the last year are as follows:

            Brent                                  4
            Harrow                                 3
            Hillingdon                             1
            Kensington & Chelsea                  10
            Westminster                            8

On this basis, therefore, Kensington & Chelsea would have the most recorded enquiries.

6.5    Because Westminster has more frequent enquirers?
Numbers of clients for each Adult Directorate, and the number of enquiries coming from
their most active enquirer, are as follows:

                     Number of           Number of          Number of      Number of
                     enquiries           clients            enquiries      enquiries
                                                            from “top”     from “top”
                                                            client         3 clients
Brent                               52                 36              4              8
Harrow                              25                 24              3              5
Hillingdon                          29                 19              5             12
Kensington &                        62                 47              6             13
Chelsea
Westminster                       157                  91            30             44
Table 3: Enquiry and client numbers of Adult Directorates

This gives an indication that the number of enquiries for Westminster is influenced to some
degree by some very active enquirers. However, the fact remains that Westminster has
about twice as many people contacting PALS as Kensington & Chelsea.

There are also some more speculative possibilities:

6.6    Service User Culture
There is some evidence in Westminster of a service user culture of putting even very
minor concerns in writing. Where it is not clear that these are formal complaints, they are
being dealt with by PALS. This means that the service user culture in Westminster has
provided a clear, identifiable, ready-made route into PALS. One of the problems for PALS
link workers elsewhere is that when someone contacts them with an issue, it is unclear
whether they are being contacted as a PALS link worker, on the basis of their main post,
or simply because they happen to be there. This inevitably leads to under-reporting of
issues.

Complaints figures for the past two years also suggest that there is a higher rate of
complaining in Westminster than in other adult Directorates. The relatively low rate of


                                                       9
                                                                                 CNWL 113A/2006
upheld complaints in Westminster suggests again that this may relate more to culture in
the Westminster population than to service quality.

            04/05       04/05                         05/06        05/06
            Complaints upheld   % upheld              complaints   upheld        % upheld
Brent                18       3      17%                        15             0            0%
Harrow               22       1     4.5%                        24             2            8%
Kensington &
Chelsea               35         5    14%                       38             2            5%
Westminster           59         4     7%                       77             1            1%
Table 4: Numbers of Complaints and Numbers Upheld in Adult Directorates, 2004-2006

6.7    Options for Service Users & Carers
In Harrow (for example), there has long been a well-established advice service run by
MIND, a large and active user group under the auspices of MIND that takes up individuals’
issues, and an active Carers Group that also takes up carers’ issues. Harrow link workers
believe that users and carers are choosing to raise their concerns through these channels.

In Westminster these options do not have quite the same profile, although users do (as in
all other adult Directorates) have access to an Advocacy service, and the profile of
Westminster Carers Service has been rising over the past couple of years. This means
that there appear to be fewer alternative avenues for raising individual (as opposed to
policy) concerns in Westminster, so more of these may come through PALS.

6.8    Differences in Publicity
The service is very well-publicised at the Gordon Hospital, in Westminster, which receives
a large number of enquiries (41 through the year). On the other hand, there have been
problems publicising the service in some of the community services in Harrow. So this
may also account, to some degree, for the difference.

6.9   Conclusions
The greater number of enquiries in Westminster seems therefore to be attributable to
     A higher number of in-patient beds in the Directorate
     Some particularly active enquirers
     A greater readiness to express concerns and complain in Westminster
     Fewer alternative means of dealing with individual issues than in other Boroughs.

It may also be attributable to better publicity for the service in Westminster. The PALS
Manager will therefore undertake an audit of publicity in inpatient units, and in a sample of
community-based services, during 2006/07, and will also work with Westminster’s Service
Head and clinical governance groups to further explore these issues.


7.     Types of Enquiry

“Problems” (related to services) remains the largest single category of PALS enquiry.
However, as a proportion of PALS enquiries it is declining – the category made up 45% of
enquiries last year, and 67% the year before – and this year, for the first time, it has
dropped below requests for Information and Advice combined (now standing at 46% of
enquiries, compared to 43% last year). This indicates that people’s use of our PALS
service is shifting from problem-solving to seeking information and advice.



                                                 10
                                                                               CNWL 113A/2006

                            Types of PALS Enquiry 2005-2006
                             Work
              Suggestions    5%             Thanks
                                    Other
                  1%                          1%
                                     5%

                                                                 Information
              Complaints                                             34%
                 5%




                    Problems
                                                        Advice
                      37%
                                                         12%




Requests for work or voluntary placements have risen from 1% last year to 5% this year.
PALS has increasingly been used as a point of access for enquiries (sometimes email
mailshots) about work placements and opportunities. There also appears to be increasing
demand for volunteering opportunities in mental health. PALS will be working with the
Head of Occupational Therapy and with Capital Volunteering in Hillingdon, to see if the
advances made in Hillingdon can be spread into PALS or further within the Trust.

Gratifyingly, we are again able to include “Thanks” as a category, having received 5 such
messages during the year: one regarding Brent, two related to Older Adults and two for
our Corporate services. The details were as follows:
    A phone call to a Brent South PALS link worker, thanking her for her support to a
       carer
    An email asking us to trace and thank the ward manager of Kershaw ward for
       arranging the transfer of someone to the Woodland Centre, Hillingdon, where they
       could more easily be visited by relatives
    A phone call praising two members of staff on Mary Seacole Ward, and describing
       them as “fantastic”.
    A phone call to thank the PALS manager for his help regarding an Older Adult in
       Hillingdon
    An email to the Communications Manager, thanking her for effectively doing a
       PALS piece of work and establishing the referral procedure for a Brent resident
       experiencing mental health problems.


8.    Types of Problem Raised

We now focus on the problems raised with PALS, in an effort to learn from these. We
should note here that a problem brought to PALS may contain a number of elements, each
of which is reflected in these figures: so a single “problem” might contain care and
treatment, staff attitude, communication and even records issues.




                                            11
                                                                                               CNWL 113A/2006

                                   Problems by Type, 2004-5 and 2005-6

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                 80
                 70
                 60
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                 40                                                                                   2005-2006
                 30
                 20
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The profile of problems brought to PALS remains similar to that in previous years, with a
preponderance of issues concerning care and treatment – unsurprising, as this is the
Trust’s core business. However, there has been an increase in problems regarding access
to services, and people have also started contacting PALS about housing issues (8
issues).

As can be seen, the areas in which more than 10 issues have been raised are access to
services (25), staff attitude (16), care and treatment (85), communication (14), records
(17), and “Other” (26). These areas will be looked at beginning with the largest category,
Care and Treatment.


9.              Care and Treatment Issues


                           "Care & Treatment" Problems 2004-5, and 2005-6

          16
          14
          12
          10                                                                                        2004-2005
           8
           6                                                                                        2005-2006
           4
           2
           0
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            o s l ca f ca u lta nti fe r tme e a ati acti p ini t me issi f ca ... sio me trai
          gn        o s te e a                L dic t      o a           o m n s s
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       D y al C                                                           r
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                                                           12
                                                                             CNWL 113A/2006
There has been a spike since last year of “quality of care” issues (10, compared with 3 last
year), and in “second opinion” issues (4 this year, none last year). There were also slight
increases in the numbers of issues related to detention, perceived lack of treatment, and
medication. These five areas are now covered in a little more detail:

9.1       Examples of Quality of Care (10 Issues)
         Concerns about the alleged lack of activities for an in-patient, the lack of an attempt
          to discover the patient’s interests, the lack of food available outside meal times.
         Concern about the quality of care provided by a private adolescent unit to which we
          refer patients
         A number of concerns about in-patient treatment of a Westminster patient
         Concerns about the care of a patient who received different aspects of his treatment
          from 3 London mental health trusts.

9.2     Detention (12 Issues)
The theme in these issues appears to be that PALS provides a means for some detained
patients to express their unhappiness at being detained. There is considerable liaison with
Mental Health Act Administrators, to ensure that these patients are making use of their
rights to Managers’ Hearings and the Mental Health Act Review Tribunals.

9.3   Lack of Treatment (6 Issues)
Elements in these concerns were
     Unhappiness at a team’s approach to providing boundaries for a service user to
      manage their dependency
     A team’s difficulties in seeing and responding to mental health problems that co-
      existed with an alcohol issue, resulting in considerable stress for the patient’s family
     Unhappiness at a Community Mental Health Team’s application of criteria for its
      involvement.

9.4    Medication (14 Issues)
These included
     Concern at the changing of a Kensington & Chelsea in-patient’s medication,
       allegedly without their consent
     Allegations that a Westminster team had prescribed harmful medication to someone
       who attended A & E.
     Concern at the Trust’s change from Clozapine to a generic version of Clozaril, and
       perceived reactions to this
     Concern that problems had arisen for a discharged Hillingdon in-patient due to their
       medication details being faxed to the wrong GP
     A service user seeking (inappropriate) access to benzodiazepines
     A Hillingdon service user expressing difficulties in weaning themselves away from
       an MAOI (Monoamine-oxidase inhibitor) anti-depressant
     Allegations by a Westminster relative that an in-patient had been denied some
       medication, and other medication had been wrongly reduced.
Clearly, as in all other matters, the role of PALS in these cases was simply one of liaison in
an attempt to resolve the enquirer’s perceived problem.

9.5       Second Opinion (4 Issues)
         A Brent patient’s mother was concerned that her daughter’s diagnosis did not match
          her experience of the problem. She wanted a second opinion, and with the
          daughter’s agreement, this was quickly arranged.

                                                13
                                                                             CNWL 113A/2006
         Relatives of a Westminster patient found themselves in a similar position to that
          described above, and the patient also requested a second opinion. This proved
          more difficult for them to achieve.
         A Harrow patient wanted a second opinion, which his Consultant had refused. He
          was given advice on what his next step should be.
         A West London Mental Health Trust patient’s GP had referred them to a CNWL
          team for a second opinion. Clearly this was not the correct procedure. The patient
          was not prepared to see their WLMHT Consultant to request referral for a second
          opinion, so the issue could not be resolved.


10.       Other Types of Problem

10.1 Access to Services
These included
    An enquirer seeking to be treated by Westminster mental health and substance
      misuse services, where for some time it was considered that no mental health or
      substance misuse problem was present.
    Two cases of Brent residents with mental health problems being on remand in
      prison, with relatives concerned that this was harming their mental health.
    Difficulties in obtaining help for adults previously diagnosed as having attention
      deficit hyperactivity disorder, in Brent and Westminster
    A service user who believed, incorrectly, that a Hillingdon service was refusing to
      work with her.

10.2      Staff Attitude
         A number of concerns were raised by visitors to wards at St Charles, where staff
          were perceived as being unco-operative with them. Some of these concerns
          evolved into formal complaints. In response, staff have been encouraged to attend
          customer care training, and carer awareness training has been provided on-site.
         Concern of a Westminster service user about the approach of a Senior House
          Officer. The Consultant agreed that this would be dealt with through supervision.
         Concern by a Westminster service user that she was being “squeezed out” of a
          service. A meeting with the service manager helped too assuage this.
         Concerns from an Ealing Substance Misuse Service user and a relative, that staff
          were not listening to the service user and treating him unfairly. A meeting with the
          service manager about this was arranged.

10.3 Communication
In addition to the issues mentioned in the report for July to December 2005, these included
the following:
     Concern at staff not responding to messages left
     Concern about lack of information following a Serious Untoward Incident. This was
        due to misunderstanding of the Trust’s procedure, which was rectified
     A range of concerns about communication relating to the physical health of an
        Older Adults in-patient.

10.4 Records
These issues included
    A Brent service user seeking copies of letters written by Consultants to third parties


                                                14
                                                                             CNWL 113A/2006
         A carer of a former CAMHS patient seeking access to records for a patient who was
          now under the care of another Trust
         A Kensington & Chelsea carer wanting changes to references to herself in a
          patient’s file, to which she had obtained access, and which she regarded as
          subjective and judgemental
         A former Kensington & Chelsea service user’s concern that records that she had
          obtained copies of were not sufficiently legible, and were inaccurate
         Difficulties in obtaining medical information on a Westminster service user for their
          solicitor to defend them in court
         Apparently inaccurate leave forms
         Difficulties in obtaining a copy of a third party referral to a service
         Concern about the recording and communication of changes to prescribed
          medication
         A relative seeking a report to support a service user’s application for naturalisation
         A solicitor complaining of difficulties accessing a service user’s record for a Mental
          Health Review Tribunal.

10.5 “Other” Issues
These covered a wide range. Some examples are
    A support group co-ordinator unhappy that the Trust had not responded to emails
      she had sent
    Concerns from a relative about the mental state of a Brent resident who had no GP.
    A Hillingdon caller who had been assaulted while visiting her son on the ward,
      asking how to avoid this in future
    A Hillingdon carer whose husband had left the ward following an assault on him
      there
    A number of issues relating partly or wholly to other Health organisations.


11.       How were PALS Enquiries Dealt With?

Dealing with problems that come to PALS is rarely clear-cut. The aim is not to investigate
and come up with a clear objective response, as it is with formal complaints, but to find a
solution that, as far as possible, meets the concerns of the person with the problem. Many
issues appear resolved for a while, then resurface later; or change their nature as work on
them progresses.

However, the broad categories of responses that our PALS service provided to all its
enquiries over the year, is shown below.




                                                15
                                                                                                                                                               CNWL 113A/2006

                                                  Outcomes of PALS Enquiries, 2005-06

          160
          140
          120
          100
           80
           60
           40
           20
            0
                       n                     d              n            n             r                           s           ts                                        rg          d
                     ve     ed            fte            ve          tio            he            ..            te          in            AS             y.
                                                                                                                                                            ..
                                                                                                                                                                        O         ve
                gi       end          ra              gi          lu             ot            r.            ca        p la             IC          t or             l.        sol
             e         m           td               n           so                         he             vo                        to          tu                vo        re
         vic         m          in            at
                                                 io          re                        ot              ad            om         ed            ta               to
      ad          co       pl
                              a
                                         rm              no                         to             to          to
                                                                                                                  C          rr          to
                                                                                                                                            s             d
               re                      fo                                         d            ed                         fe                           re
             e         c om         in                                       r re           rr            re
                                                                                                             d         re           re
                                                                                                                                       d          fer
          ng                                                               er            fe            er                        er            re
      c ha                                                             r ef          re            r ef                      r ef



The high numbers of information-giving and advice-giving outcomes reflect the high
number of this kind of enquiry. For the more problematic issues, more were resolved (73)
than not (31). A number of issues (30) were “referred to statutory organisations”. This
broad category could include referral to other organisations, such as Social Services
Departments, but equally (and more usually) has in practice meant passing the issue to
part of the Trust, but not necessarily hearing the result. For future reports this category has
been changed so that it will be possible to see more precisely where issues were referred
to.


12.          Points for Organisational Learning

With formal complaints there is an investigation and complaints are either upheld, partially
upheld or not upheld. This makes it relatively simple to focus on the “upheld” complaints
and draw lessons from them.

In PALS, things are much muddier. Liaison and negotiation take the place of investigation.
Part of the role is simply about enabling the Trust to informally manage discontent. It is
therefore more difficult to objectively identify lessons. Points for organisational learning
must therefore be made quite tentatively:

            The messages of thanks directed towards the ward manager of Kershaw ward and
             the two staff members at Mary Seacole ward indicate that things are being done
             right. Local clinical governance groups may wish to reflect on what pleased the
             recipients of our services in these cases, and how to consolidate and spread this
             good practice.
            It appears that there might be variations across the Trust with regard to the
             readiness of services to arrange second opinions. It may be useful for local Clinical
             Governance groups, possibly with the help of Clinical Audit, to consider how closely
             the Trust’s policy on Second Opinions is being followed locally.
            It appears that the safety from assault of patients and visitors at the Riverside
             Centre may need reviewing. However, more objective evidence of incident rates
             there is required, so our Clinical Risk Advisor has been alerted to this possibility.




                                                                                                16
                                                                                                    CNWL 113A/2006
13.         Ethnicity of Enquirers

As usual, this is a comparison between the ethnic profile of the population served by the
Trust9, and the number of enquiries coming from Trust patients according to ethnicity. It
should be noted that our database software only directly provides the ability to work with
numbers of enquiries, not enquirers, and this can produce some distortions:


                        Ethnicity of PALS Enquirers and Trust Population 2005-2006

           50
           45
           40
           35
           30                                                                                             PALS Patients %
           25
           20                                                                                             Trust Population %
           15
           10
            5
            0




                                     d


                                   wn
            As ian - In )
                O ck ean




                   As lad i




                           t K er
                           Ch er
                 n - Pa ian
                   As nc A n




                                     e
                             - O hi
            ac Bl ribb r
                  ac e sh
                                     h




                                     n
               As ian rab
                       Ca the




                                 ixe
                                  es
                                  ca
                       W ritis




                       an ista
                                 es

                                  th




                       No Oth
                                   i




                               no
                     W te Ir




                                 d




                               in
                    er Afri
                               O




                              M
                              B




                   -B k
                          hi
                         te




                           g
                Bl hit




                         n
                        (i




                       ia
       hi




                      a
     W




                     k


                  th




              ia
              k
         Bl




According to this, White British people are under-represented in the number of enquiries
that Trust patients make, providing 42.9% of the Trust population, but 30% of the
enquiries. Since PALS is charged with improving the access to and influence over health
services of people who are usually disadvantaged in these terms, this may reflect a certain
degree of correction in terms of access – since in ethnic terms, “White British” people are
likely to be relatively well-informed about how to access and influence health services.

“White Other” people are also under-represented (3.8% against 8.5% of the Trust
population) - and the number of White Other people in the Trust population is likely to have
grown considerably since 2003.

On the other hand, “Black African” people are over-represented in PALS enquiries from
Trust patients (9.8% against 4.8%), as are “Black Other, including Arab” (13.9% against
0.9%), and “Other” (27.9% enquiries from Trust patients, against 2.7% of the Trust
population).

The problem of relying on figures for enquiries is that a single patient who is a prolific user
of PALS can result in distortions. This has occurred in the “Other” category, with 30 of 34
enquiries coming from one person. Our software suppliers advise however, that this is the
normal method for profiling for ethnicity amongst Complaints and PALS services using
their software. On the other hand, counting enquiries has a certain validity, since it gives
an indication of the degree of confidence that people from different ethnic groups have in
the service.


9
    Figures for 2002/03, so they are slightly dated and are not yet adjusted for the Hillingdon population.

                                                              17
                                                                               CNWL 113A/2006

14.   The PALS User Satisfaction Survey

The simplified questionnaires, which were first introduced in July 2005, continue to be
used to check the satisfaction of people who have used PALS and left an address or email
address.

A total of 164 questionnaires were sent out, and there were 45 responses – a response
rate of 27.4%.

One of the questions was how the PALS user heard about PALS. This complements our
own attempts to find this out at the time of an enquiry (see Section 3 of this report).


           How Respondents Heard About PALS July 2005 - June 2006



                                                               word of mouth
                                                                   27%
                    other
                    40%



                                                                   leaflet
                                                                     9%
                                   staff              poster
                                   11%                 13%




The responses suggest that posters and leaflets in fact do remain significant means of
people hearing about the service, together making up nearly a quarter of the responses.
Word of mouth seems a more important means however. This proportion is gratifying, as
clearly people will not use a service that other people have told them about, unless the
report has been positive.

The high proportion of “other” means of hearing about the service is interesting. These
other means included advocates, the staff directory, a ward meeting, a mental health
meeting, the Citizens Advice Bureau, a newspaper, MIND, the Primary Care Trust, a
doctor, “Legal Aid”, and the Trust website.

14.1 Knowing the Person They Spoke to was a PALS Link Worker
This is a real issue in our system, where PALS link workers wear more than one “hat”.




                                            18
                                                                          CNWL 113A/2006

                     Knew Was Link Worker July 2005 - June 2006



               30%



                                                                                     Yes
                                                                                     No



                                                                70%




A disturbing proportion over the year reported not being aware that the person they spoke
to was a PALS link worker. But we must bear in mind that 44 people responded to this
question. On the other hand, 45 responded to the question on how they heard about
PALS. This suggests that people were aware that they were contacting PALS – they just
didn’t understand the nomenclature for the service that we use in this Trust. Possibly then ,
this is an unhelpful question.

14.2   Satisfaction with Speed of Response


                       Satisfied With Speed July 2005 - June 2006


                             11%




                                                                                    Yes
                                                                                    No




                                                  89%




89% of the respondents were satisfied with the speed of our response, with 11%
dissatisfied. This is good, but we would like to improve it. Satisfying PALS enquirers with
the speed of our response is likely to make it easier to satisfy them with its content. And
views of what constitutes a slow or fast response are likely to be widely shared.




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                                                                           CNWL 113A/2006
14.3   Satisfaction with the Help/Advice Given


                   Satisfied With Help / Advice July 2005 - June 2006



                       19%




                                                                                    Yes
                                                                                    No



                                                         81%




There was slightly less satisfaction with the help or advice we gave over the year. One
factor in this is that this is a much more subjective judgement. The comments made
(below) give the beginnings of an indication about how far an original request was
reasonable, and therefore how far satisfaction or dissatisfaction may be justified.

14.4   Comments Made

A number of comments were quoted in the PALS report covering July to December 2005,
and they will not be repeated here. They were overwhelmingly positive.

There are more negative comments for the last six-month period. Some context for this
can be given in the following bar chart, which shows greater dissatisfaction in responses to
the PALS survey over the last two quarters than during July to December 2005:


              Satisfaction with PALS' Help/Advice, over 4 Quarters of PALS Year


         16
         14
         12
         10                                                                           No
          8                                                                           Yes
          6
          4
          2
          0
                   1              2                3            4



For January to March 2006:
    “Biased service on side of hospital trust staff despite evidence of obvious abuse of
      position, hostility and obstructiveness causing extreme distress in an already tragic
      situation.”


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                                                                           CNWL 113A/2006
      “I cannot be satisfied as this is just one of many government run complaints
       departments under the NHS.”
      “My wife and I must say we had the best support and help from PALS workers.”
      “Efficient and reliable. Quick response. Easily accessible and to talk to. Thank you.”
      “I was not completely satisfied with the outcome of my complaint and therefore
       made an appointment at Central Middlesex Hospital…I gather that the mental
       health authorities are aware of the situation and wish to place a member of the
       crisis team at A & E. I do hope this improvement in the service will be carried out.”
      “There seems to be a process in the NHS [whereby] whatever you say is twisted
       into “procedure”. Regardless of what I said to Brent PCT I was transferred to you.
       My wishes were completely ignored and your service seemed completely impotent
       to act, and this is the second situation. But where the source of that corruption is I
       do not know. It appears to be systemic”
      “There has been nearly 2 years and several visits to the trust to place the matter
       back into the patient’s hands.”

For April to June 2006, comments were as follows:
    “Response very quick and efficient.”
    I have found PALS to be excellent. At this point I have had several contacts with
      their highly trained concerned and efficient staff. I think PALS is a valuable
      service…contributes a great deal to the contact between patients and the NHS.”
    “I think people should be made more aware that there is a PALS link worker in
      every work place within the NHS. I had spoken to my PALS worker for 9 months
      before actually needing her as a PALS worker. It then seemed strange talking to her
      about a complaint.”
    “Highly disappointing and of no assistance in a matter of National Importance. A
      pure waste of weeks of failing to take an attitude [in] which the press, television and
      legal aid agree with my request for support in bringing to court those responsible
      [for] medical negligence of 1st degree.”
    “Attentive and helpful.”
    “Very happy!! Thank you for a First Class Service.”
    “Very good service. Excellent help…”
    “We were very pleased with the service and it has helped us a great deal as
      [patient] now has a new therapist thanks to PALS.”
    “…was very helpful.”
    It was very friendly and efficient. I was particularly impressed that when someone
      said they would phone back at a later date they actually did, which is not the case
      with many organisations.”
    “Very informative and efficient. Thank you.”

14.5   Lessons from the Survey
      It is clear that what people value in a service like this are fast responses,
       friendliness, a helpful attitude, efficiency, and people doing what they say they will
       do. These are clearly qualities we need to continue aiming for, not only as a PALS
       service, but in all the services provided by the Trust.
      When the time comes for updating the PALS questionnaire, the question about
       knowing the staff member spoken to was a link worker should be withdrawn.




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                                                                            CNWL 113A/2006
15.    Progress on Plans for PALS Third Year

15.1 Revised Operational Policy
A revised operational policy was approved in January. It included an Equalities Impact
Assessment, which will now need to be reviewed in the light of the next stage of Disability
Discrimination Act implementation on 1 December 2006.

15.2 More effective learning from PALS
Following consultation with service heads, PALS link workers are beginning to be invited to
Clinical Governance Group meetings, and the Groups – and link workers – are being sent
Trust Board Reports on PALS for discussion, once they are approved by the Board.

15.3 Involvement in Information Provision
Service heads felt that PALS link workers should not be seen as uniquely responsible for
the general provision of information, as this was a responsibility of all staff. However, link
workers are being kept informed on issues that people may ask about, including the
Trust’s application for Foundation Status.

15.4 Contribution to Culture Change
The PALS Manager has become responsible for day-to-day co-ordination of the induction
sessions based on the service user video. The overall lead on this is the Head
Occupational Therapist. During the year July 2005 to June 2006, 465 new staff went
through these sessions. The evaluation forms received indicated that the sessions had
successfully provoked thinking and discussion about the way staff work with service users
and carers.

This work is now being extended to training for existing Trust staff, again based on the
service user video and provided through volunteer facilitators from among Trust staff,.

15.5 Better user involvement in service delivery
There were plans to use presentations at Trust User Forums to enable service users to
comment and make suggestions about the PALS service. However, changes to the way
the Forums are being run have made this less practicable. PALS link workers are instead
being encouraged to attend the Forum meetings in order to informally make themselves
known and gain comments and ideas about the service.

15.6 Strengthening the link workers’ role
Subject to the demands of their main roles, the opportunities for involvement with Clinical
Governance Groups, for attendance at Trust User Forums, and for facilitating training for
staff based on the service user video will hopefully, over time, raise the profile of PALS link
workers. These developments – and the profile of PALS link workers generally – will
require continued monitoring and attention during the fourth year of the service.


16.    Other Developments During the Year

A total of ten link workers from Hillingdon have been trained to deliver PALS within the
adult, older adult, and substance misuse services there. Temporary arrangements are still
in place for covering two Hillingdon services, and it is hoped that permanent link workers
for these can be trained in October.



                                              22
                                                                            CNWL 113A/2006
A work placement was provided within PALS and the Trust’s Health & Safety Department
between January and April this year, as part of the user employment programme. This
helped to increase the capacity of our PALS service, and enabled the trainee to develop
their skills and gain an employment contract within the Trust.

The PALS manager worked with the manager of Kensington & Chelsea PCT PALS to
commission and organise training for PALS workers throughout the North West London
region on “Working with Hard-to-Reach Groups”. This was funded through the Strategic
Health Authority. 38 people, including 8 CNWL link workers, attended this training.


17.       Plans for PALS’ Fourth Year

Four substantial pieces of work will be tackled:

17.1 The delivery of a PALS service within the health services that the Trust provides to
prisons. This will operate within the framework of governance to be agreed with the Prison
Service in these establishments, and of course be developed very much in collaboration
the relevant managers.

17.2 The extension of training based on the service user video to existing staff, in order
to further realise the potential of the video for achieving and maintaining a user-centred
culture in our services.

17.3      On work and volunteer placements,
         Exploring whether, and if so how, PALS might contribute to the increased use of
          volunteers, including service user volunteers, in the Trust
         Ensuring that PALS enquirers who might benefit from it, are made aware of the
          Trust’s User Employment Programme.

17.4 Reviewing the PALS service and its operational policy to ensure that they comply
with the Trust’s Disabilities Equalities Scheme, to be published in December 2006.

17.5 Continued work throughout the Trust area, on the profile of the PALS service and of
local link workers. This will involve an audit of publicity in inpatient units, and in a sample
of community-based services. It will also involve ensuring that the developments
mentioned at 15.6 above are firmly embedded.

In addition, as suggested above at 14.1, the PALS satisfaction questionnaire will be further
revised.




Claire Murdoch
Director of Nursing and Operations




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