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The Organ Donation Taskforce Report

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					                                                                                                                               Spring issue 2009




          The magazine of the National Kidney Federation




The Organ Donation
  Taskforce Report
                                      is published INTO ACTION
                                                  W              ORDS
                                          PUTTING
                                                               See pages 6 and 7 for a full report
                                                                          by Dr Paul Murphy




                                                              Introducing the NEW
                                                              NKF SURVEY ZONE!
                                                                                             y
                    YO   U doing to                                                     UR sa
        hat
               ar e                   s up
                                          po                                Ha     ve YO                           See page 5
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                                                OR
                                                   LD




                                                               W H AT ’ S   I N   T H I S      I S S U E :
                                                               Page    Article
                                                KIDNEY DA




                                                                3      NKF News
                                                                4      World Kidney Day Update
                                                                5      Have your say at the NEW NKF Survey Zone
Thu




                                                               6-7     The Organ Donation Taskforce Report - what its findings will mean to us!
                            See page 4                          8      Are your trousers too tight?
 rs




                                                         Y?




       a                                                       9-14    2008 NKF Annual Patients’ Conference report
      d




           y                          9                         15     Medical Matters
               12                 0
                    March      20                               19     Donal’s Question Time
                                                                20     Dialysing in Wurzburg
Please scroll down to non-advertisement pages which follow




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       WHO’S WHO                                                 Bob Dunn                                                                     NKF NEWS
Officers
President:
             AT THE NATIONAL
            KIDNEY FEDERATION
                                 Frank Howarth
                                                                  is Awarded an MBE              We would all like to extend our heartfelt congratulations to Bob Dunn,
Chairman:                        Ray Mackey                                                        our National Advocacy Officer, on his well deserved award in this
Vice Chairman:                   Marion Higgins                                                      year’s New Year’s Honours List. Bob has been working for the
Secretary:                       Bob Smith                                                            NKF now for over nine years, tackling a range of individual
Treasurer:                       David MacDonald
                                                                                                       patient and KPA issues, not forgetting the immense work done
Advocacy Officers
National & South:                Bob Dunn MBE
                                                                                                        in his ‘Informed Patient’ groups. Throughout this time Bob has
North Region:                    Dennis Crane MBE                                                       also been involved in many Department of Health initiatives,
Midlands Region:                 Denis Cawdron                                                         the most recent of which is the Organ Donation Task Force.
Executive committee                                                                                    Well done Bob…we’re guessing that by way of celebration
Jean Aplin                       Bob Price                                                            this means the first round is on you in Blackpool!!?
Peter MacDonald                  Pynee Sanjivi
Roger Ashelford                  Barbara Morris
William Bradbury                 Trevor Cook                                                       Bob Dunn, NKF National Advocacy Officer
Linda Pickering                  Bindu Chauhan
Susan Frade
Patrons
Baroness Cumberlege CBE DL
                                                                                           Launch of the
Prof Sir Netar Mallick DL FRCP
Baroness Masham of Ilton DL                                                         Dialysis Manifesto
The Rt Hon The Lord Norrie
                                                                              Janet Dean MP / Co-Chair All Party
Medical advisors
Mr Ali Bakran MBChB FRCS
                                                                 Parliamentary Kidney Group, standing alongside
Dr Alison Crombie BSc MSc PhD                                         NKF Chairman Ray Mackey, signs the giant
Prof Terry Feest MRCP                                             dialysis manifesto in the House of Commons.
Prof Alison MacLeod MRCP
Prof Sir Netar Mallick FL FRCP                                       29 October 2008 saw the official launch of the
Dr Richard Moore BSc MD FRCP MBA
                                                                   Dialysis Manifesto in the House of Commons. A
Dr Rakesh Patel MBChB
Mr Hany Riad FRCS                                                ceremony hosted by Evan Harris MP and the NKF
Dr Andrew Stein MRCP                                                  with speakers Donal O’Donoghue and Marion
Dr David Taube FRCP                                                    Higgins explaining the nature of this ambitious
Prof Alan Watson FRCP (Ed) FRCPCH                                  document and the reasons leading to its publication.
Specialist advisors                                                       The attending MPs then signed a symbolic giant
Mrs J Auer CQSW
Dr Joanna Chambers MB FRCP FRCR
                                                                                manifesto indicating their support of its aims.
Ms Cathy Holman CQSW
Prof Phillip Dyer OBE Phd FRCPath SRCS
NKF Young Persons' Group
Chairperson:                     Susan Frade
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Trust/Grants                     George Finch                    all advertisements on application to ensure they are             (hard copy photos can also be used and of course will be
Kidney Life Magazine                                             compatible with the ethos of the NKF, we welcome new             returned once used). Deadlines for 2009 issues are:
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                                                                                                                                                                                                  3
    World Kidney Day
    Fiona Loud, Chair of the Kidney Alliance has written to Kidney Life readers…

    Dear Kidney Life Readers

    The fourth international World Kidney Day strives to achieve three 2009 UK goals:

    1. Raise awareness of kidney disease among the general population - particularly those at risk
    2. Increase GP based testing of people at risk
    3. Encourage a healthy lifestyle for all!

    Be part of something BIG and help us raise
    awareness of kidney disease in the UK.
    You can get involved by sending an amazing kidney! eCard from
    www.worldkidneyday.co.uk organising your own fundraising activity, encouraging local
    schools to take part, sharing your ‘Keep Your Kidneys Healthy’ tips on diet, relaxation and
    exercise and generally spread the word.

    Finally, I invite you to send us details of your local WKD activities so that we can post them
    on our website and help publicise it.
                                                                                           Fiona
    ….and of course WE here at Kidney Life need all the photos and write-ups on what you
    and your KPA get up to on WKD in plenty of time for the next issue! Deadline to get your
    KPA featured in Kidney Life summer 09 issue is mid April!

          Don’t forget, get your orders in early for the NKF WKD posters >>>
                   and see page 5 for your opportunity to comment on World Kidney Day,
                                                           in our new online NKF Survey Zone!




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4
8
                                                                                                         The NKF is looking to recruit

      The NKF launches                                                                                       someone to become:

                                                                                                          Head of
      its SURVEY ZONE!                                                                                  Fundraising
                                 e NKF’
         time for You to ‘Tell th
                                                                                                        Salary: by negotiation
Now it’s                                                                                                (could also be commission based or
                                                                                                        combination of these two options).
                                                                                                        Location: Worksop NKF HQ
The NKF has now launched a major and ‘permanent’ way by which YOU, the renal                            or home-based with at least one full day
community can tell the NKF what having kidney failure is really like - and what you want                per week at NKF HQ at Worksop.
changing. Go to the NKF homepage www.kidney.org.uk and click on the new zone
button ‘Tell the NKF’. Once there you will find a number of online surveys which are                    The NKF is supported by sponsorship
quick and speedy to complete, just by clicking the mouse button. The range of surveys                   from pharmaceutical companies, renal
will be constantly updated - you just use the drop down list to pick which one (or                      industries and by public donations.
ones) you want to complete. Go on…. do it now!                                                          However it now wishes to widen its
                                                                                                        fundraising base and seeks an
The NKF has always found surveys essential to ascertain the wishes, aspirations, views and              enthusiastic and capable individual who
problems encountered by patients. But paper surveys are expensive to produce, expensive                 has experience of fundraising in the
to distribute, expensive to collect back in and very expensive to have analysed. Now all those          charitable sector, or is willing and able to
problems are behind us for this new system is virtually free to operate with all the analysis           attend appropriate NKF funded courses
being done automatically in real time. It seems to us that, with this new system, we will be            in order to learn. The successful
able to respond immediately to any developing issues by displaying a survey that will tell us           candidate will be expected to develop a
what you think of the subject and enable you to point the NKF in the right direction. All you           fund raising strategy outside of and
have to do is keep checking in to the ‘Tell the NKF’ zone to see what surveys have been                 separate from the existing financial
placed there and take a moment to tell us your view. And it can all be done anonymously.                support, and once approved, to carry out
                                                                                                        that strategy personally. The NKF does
                                                                                                        not currently have a fundraising support
                                                                                                        team.

                                                                                                        Fundraising activity will be supervised by
                                                                                                        the Chief Executive. The first year of this
                                                                                                        appointment will be a trial period which
                                                                                                        may or may not result in the position
                                                                                                        being confirmed. Please note the
                                                                                                        successful applicant will not be permitted
                                                                                                        to fund-raise for any other charitable
                                                                                                        organisation whilst working for the NKF.

                                                                                                         If you feel you are able to meet the
                                                                                                        above criteria please apply in writing
                                                                                                            and enclosing a CV to NKF HQ,
                                                                                                          Recruitment (address is on page 3)

                                                                                                       NKF POLICY ANNOUNCEMENT
                                                                                                      HEALTH TOURISM
                                                                                                      The National Kidney Federation
                                                                                                      does not object to 'those not
                                                                                                      entitled to National Health
Final point - once you have submitted the survey we will send you an email to acknowledge             Service treatment' being given
receipt. However, it is essential you click on the link in that email, or your replies will not get
considered.                                                                                           life saving Dialysis, but they
                                                                                                      should not be placed on the
Surveys already online and attracting much attention are:                                             transplant waiting list.
www.kidney.org.uk/surveys/wkd09 - World Kidney Day 2009 Survey                                         While there is a surfeit of UK residents
www.kidney.org.uk:80/surveys/nkf-future-direction-1/ - The NKF - Its Future Direction Survey           awaiting transplant, the National
                                                                                                       Kidney Federation believes that it is
www.kidney.org.uk:80/surveys/hospital-haemo-quality/ - Hosptial Haemodialysis - Quality of Care Survey correct that these patients should have
                                                                                                       priority and that it would be unethical
www.kidney.org.uk:80/surveys/anaemia/ - Anaemia Survey
                                                                                                       to give organs to people from abroad
A Needle Pain Survey and a Patient Choice Survey will be added shortly.                                while British patients were dying. The
                                                                                                       United Kingdom does not have a
      ...WELL, what do you think of this announcement?                                                 European organ donation system, it is a
   We’d love to hear from you with any ideas or concerns!                                              UK system, and is there for the benefit
                                                                                                       of residents in the UK.

                                                                                                                                                       5
                                                         Explaining the Organ
                                              By Dr Paul Murphy BA (Cantab.), MB ChB, FRCA, Consultant in Neuroanaesthesia
                                              and Critical Care, Leeds General Infirmary, Member of Organ Donation Taskforce
                                             and Clinical Lead for Organ Donation, NHS Blood and Transplant.


    The shortage of deceased donor organs for the        The Taskforce also recognised that the current             decision making, as is required in life by the
    purposes of transplantation in the UK is as well     capacity of organ retrieval and transplantation            Mental Capacity Act and in death by the Human
    known as it is tragic for those who wait in vain     teams would not be able to accommodate any                 Tissue Act. The recommendations of the
    for a life-saving or life-transforming transplant    significant increase in donor numbers.                     taskforce are summarised in Table 1, and are
    (Figure 1). Although cadaveric donation may                                                                     directed in an over-lapping and synergistic
    never fully meet this need, it is the fact that      The Taskforce Report. The draft taskforce                  fashion towards improvements in five principal
    many other countries do so much better (Figure       report was presented for consideration by                  areas:
    2) that has provided the real impetus and            ministers in the autumn of 2007. It contained                 Legal and ethical issues
    demand for change. The report of the Organ           14 headline recommendations that would, the                   The role of hospitals within the NHS
    Donation Taskforce, and the 14                       Taskforce predicted, increase donation rates by               Donor transplant co-ordination and organ
    recommendations that it contains, is the political   at least 50 per cent over five years were they to             retrieval
    and professional response to this challenge, and     be implemented in full. The report was accepted               Training
    represents a seminal moment in organ donation        in its entirety by all four Health Departments,               Public engagement.
    and transplantation in the UK.                       and is now in the early stages of
                                                         implementation.                                            Legal and ethical obstacles represent
    Background. The Organ Donation Taskforce was                                                                    significant barriers to donation, and relate
    commissioned in 2006 by Rosie Winterton MP,          The Taskforce report is both contemporary and              principally to how (if at all) the care given to a
    the Health Minister with responsibility for          principled; it puts the patient at the centre of           patient who is dying, but not yet dead, might be
    donation and transplantation in England at that
    time. It was chaired by Elisabeth Buggins, and        Table 1. Organ Donation Taskforce Recommendations
    included professional representation from critical
    care, donor transplant co-ordination,                 1&2 Establish NHS Blood and Transplant as the UK-wide Organ Donation Organisation.
    transplantation, bio-medical ethics, health
    economics, Trust management and patient               3    Overcome the ethical, legal and professional obstacles to deceased donation, and establish an
    groups. The Taskforce’s Terms of Reference                 independent, UK-wide donation ethics committee.
    required it to identify all current obstacles to
                                                          4    All parts of the NHS must embrace donation as a usual, not unusual event. Each Trust should have an
    donation and transplantation, and to
                                                               identified Clinical Donation Champion, guidelines to support donation and a Trust Donation Committee.
    recommend solutions within existing operational            Donation should become a routine component of end of life care.
    and legal frameworks. Although assembled by
    the Department of Health in England, the              5    Minimum criteria for the identification and referral of all potential donors should be introduced on a UK-
    Taskforce also had representatives for the Health          wide basis. The effectiveness of these criteria should be assessed annually.
    Departments in Northern Ireland, Scotland and
    Wales.                                                6    Donation activity in all Trusts should be monitored. The Trust Donation Committee should report on this
                                                               activity to the Trust Board through their clinical governance process. These reports should be part of the
                                                               assessment of Trusts through the relevant healthcare regulator. Benchmark data from other Trusts should
    The Taskforce met on a monthly basis from
                                                               be made available.
    December 2006 until the following autumn.
    From the outset it was heavily influenced by          7    Brainstem death testing should be carried out wherever possible, even if organ donation is considered an
    experiences in Spain and the USA, where the                unlikely outcome.
    systematic identification and resolution of
    barriers to donation have resulted in impressive      8    Financial disincentives to Trusts facilitating donation should be removed.
    and sustained increases in organ
    transplantation. Review of processes in the UK        9    The current network of donor transplant co-ordinators (DTCs) should be expanded and strengthened
                                                               through the recruitment of additional DTCs to be employed centrally by a UK-wide Organ Donation
    revealed a series of weaknesses in all parts of
                                                               Organisation. DTCs should have closer working relationships with critical care units, and work with the
    the donation pathway, including:                           local donation champions to collaboratively deliver the local objectives of the Taskforce report.
       inconsistencies in the identification and
       referral of potential deceased donors that         10   There should be a UK-wide network of organ retrieval teams resourced to ensure timely and high quality
       were the result of poor education and                   organ retrieval from both heart beating and non heart beating donors and accountable to the national
       training, limited resources to support donation         organ donation organisation.
       within critical care, and uncertainties over
       some ethico-legal aspects of the process;          11   All staff involved in the donation pathway should receive regular and mandatory training in the principles
                                                               of donation.
       frequent failures to make best use of the
       knowledge and skills of donor transplant co-       12   Appropriate ways should be developed to both publicly and privately recognise individual donors,
       ordinators (DTCs), this in part being a                 including national memorials, local initiatives and personal follow-up to donor families.
       reflection of the low number of DTCs in the
       UK, but also the poor relationships that           13   There is an urgent need to both identify and implement the most effective means of increasing public
       currently exist between critical care and               awareness of the benefits of donation and transplantation and translating this into increasing family
       transplantation; low family consent rates,              consent rates for donation.
       particularly amongst black and minority ethnic
                                                          14   The Department of Health and Ministry of Justice should develop formal guidelines for coroners
       groups.
                                                               concerning organ donation.


6
Donation Taskforce Report
                                     Number of deceased donors and transplants in the UK,                                           Public engagement. The family consent rate
   Figure 1                                       1 April 1997 - 31 March 2008,
                                      and patients on the active transplant list at 31 March                                        for donation (referred to as ‘authorisation’ in
               8000
                                                                                                                                    Scotland) in the UK stands at 61per cent overall,
                                                                                                                         7655
               7000                                                                                            7234                 this comparing with consent rates of 80-90 per
                                                                                                      6698                          cent in many parts of Europe. Current efforts to
               6000                                                                          6142                                   improve public awareness and support for
                                                   5532     5604     5654        5673
               5000    5248     5345     5354                                                                                       donation focus heavily on the Organ Donor
                                                                                                                                    Register (ODR), not least because the consent
     Numbers




                                                                              Donors
               4000                                                           Transplants                                           rate rises to 91 per cent when knowledge that a
               3000
                                                                              Transplant List                                       potential donor is on the ODR is used to inform
                        2527
                                 2360      2428     2311     2247      2388       2396        2241     2196
                                                                                                                2385     2381       the approach to the family.
               2000

                                                                                                                                    At the time of writing just under 16 million have
               1000   796      738      777       773      745      777        770       751         764      793      809
                                                                                                                                    registered their desire to donate in this fashion;
                 0                                                                                                                  Prime Minister Gordon Brown has recently
                      97-98     98-99    99-00     00-01    01-02    02-03      03-04       04-05    05-06     06-07    07-08
                                                                                                                                    called for this to rise to 25 million by 2013.
                                                                     Year


 changed in order to maintain a potential to                              support for a potential donor family, were often          Conclusions. Rates of deceased donation in the
 donate. These matters apply most directly, but                           not being utilised to the full. Donor transplant          UK are little short of shameful. The human cost
 not exclusively, to donation after cardiac death                         co-ordination in the UK is in urgent need of              is immense and, although the challenge is
 (non heart beating organ donation), and must be                          review and modernisation, and the Taskforce has           daunting, the current situation cannot and will
 resolved in as authoritative fashion as possible if                      therefore recommended that there be a                     not be tolerated any longer.
 those who work in critical care and emergency                            substantial increase in the number of DTCs,
 medicine are to embrace the philosophy of the                            consistency in their employment that can only be          The stark reality is that, up until now at least, no
 taskforce report to the full.                                            guaranteed by a move to central contracts with
                                                                                                                                    one would come to the UK to learn about
                                                                          NHSBT but, most importantly, that their focus of
                                                                                                                                    donation. But this is set to change. The UK now
 The role of the NHS. Implementation of the                               work moves away from transplantation and
                                                                                                                                    has a model for donation that is based upon a
 Taskforce report will fail unless those who work                         closer to critical care.
 at all levels within our acute hospitals embrace                                                                                   three-way partnership between acute hospitals,
 its recommendations with boldness and                                    Whilst attention inevitably centres on donor              central health departments and NHS Blood and
 commitment. Central to the whole initiative is                           identification and referral, the primary outcome          Transplant, each with their own expectations,
 the clinical collaboration between critical care                         is not donation per se but the retrieval of the           roles and responsibilities.
 units and the local donor transplant co-                                 maximum number of organs that are optimum
 ordinators. The Taskforce recommends that                                condition and recovered in as timely a fashion as         The Organ Donation Taskforce has predicted a
 every trust establishes a donation committee,                            possible. In addition, the retrieval should be            50 per cent increase in donation rates over the
 chaired by a non-clinical champion, to support                           performed in a way that minimises its impact on           next five years. Frankly, we should contemplate
 the work of the collaborative, provide                                   the acute services of the donating hospital and,          no less.
 governance oversight for all aspects of donation                         most importantly, keeps to an absolute minimum
 within a Trust and to report to the Trust Board.                         the burden placed on the donor family as they
 It is anticipated that the donation committee will                       wait for the retrieval process to begin.
 be responsible for scrutiny of local data on                             Retrieval teams currently rely heavily on
 donation activity using data collected as part of                        middle-grade surgeons and are invariably                 Figure 2             Informed consent       Presumed consent
 the on-going potential donor audit, and the                              dependent on the anaesthetic and critical
                                                                                                                                      Spain
 application of remedial actions as are necessary.                        care staff of the donating hospital. Although
                                                                                                                                    Belguim
 The importance of this later role will grow as                           not considered in detail by the taskforce, it is
                                                                                                                                         US
 aspects of these processes become incorporated                           clear that current retrieval arrangements are
                                                                                                                                     France
 into the annual assessment of Trusts. Finally, the                       in need of some overhaul, both to ensure
                                                                                                                                    Portugal
 Taskforce was keen to ensure the removal of all                          the capacity to increase activity when donor               Austria
 local financial disincentives to donation, both                          numbers increase, but also to address                      Ireland
 those relating to costs incurred in caring for a                         current inadequacies in the services that                     Italy
 potential donor but also the salary costs of the                         they offer.                                               Norway
 clinical champions.                                                                                                                 Finland
                                                                          Training. Deceased organ donation is a                Netherlands
 Donor transplant co-ordination and organ                                 relatively infrequent opportunity in many                Germany
 retrieval. Donor transplant co-ordination has                            hospitals, and it is inevitable therefore that            Canada

 developed in a piecemeal and haphazard fashion                           clinical staff risk becoming de-skilled                   Sweden

 over the last two decades. DTC posts have                                without on-going education and training.                       UK

 inconsistent funding arrangements, vary                                  Thus, the Taskforce recommends that there                Denmark
                                                                                                                                 Switzerland
 considerably in the proportion of work that is                           should be a centrally delivered programme
                                                                                                                                   Australia
 recipient-related (as opposed to donor-related),                         of professional development for those most
                                                                                                                                     Poland
 and frequently demand working hours that are                             closely involved in donation who then
                                                                                                                                New Zealand
 well in excess of those permitted for junior                             themselves will become responsible for
                                                                                                                                      Israel
 doctors. The Taskforce was even more concerned                           delivering in-house educational programs
                                                                                                                                                0   5       10       15      20       25   30     35
 to learn that the skills possessed by DTCs,                              within their own institutions.                                                    Number of deceased donors
 particularly relating to donor assessment and                                                                                                               per million population 2007



                                                                                                                                                                                                       7
                               ARE YOUR TROUSERS TOO TIGHT?
                                                        By Debbie Sutton, Renal Dietician, Queen Alexandra Hospital, Portsmouth

                                     Had a good Christmas? Are the buttons on your top stretching a bit? Have
                                     you gone up a notch on your belt? If the answer is yes to any of these or if you
                                     just want to be reminded of how to keep well by eating well - then read on...

    If healthy eating has come to mean the          which nutrients and how to ensure you                    Portion size is vitally important. Many
    same as a slimming diet we can blame            eat them all in the correct proportions.                 people do eat a well balanced and
    the press for this and this impression is                                                                healthy diet but they are still overweight
    not helpful. So, for a change, let’s think      The main nutrients are shown around the                  because they eat too much.
    about what we all actually need. Old or         plate, but there are many others that are                Requirements differ but if you think you
    young, well or ill, fat or thin we all need a   needed in tiny amounts. The good thing                   are following the advice above, maybe
    well balanced diet.                             is that if you eat a variety of foods from               you just need to reduce the amounts you
                                                    all the groups, you will automatically be                eat. It may seem unfair – you eat the
    Weight loss can only be achieved if             getting everything you need….and may                     same as your family does but you are the
    energy going ‘in’ (calories) is less than       get those trousers to fit more comfortably               only one who gains weight. Often it is
    energy being expended ‘out’. So, if your        into the bargain!                                        unfair, but we need to accept that we are
    weight is unchanging then you have the                                                                   individuals and what is too little for one
    balance just right. If it has increased you     The proportions are important. It helps                  person is too much for another.
    need to reduce the number of calories           your body to make efficient use of what
    going in (eat differently) and increase the     you offer it. For example, protein is                    If you know you have a poor appetite,
    amount of energy going out (do more)            needed for growth and repair and for                     use the plate to identify what you may be
    until that balance is restored - and your       kidney patients particularly, for a healthy              short of. Concentrate on eating energy
    trousers don't feel like they are going to      immune system. But your body can use                     giving, plain foods, and average portions
    split you in half.                              protein for energy if you don’t eat enough               of protein containing foods. If you have
                                                    of the foods that are primarily energy                   no room for vegetables it might be
    You can reduce energy in all sorts of           providers, such as the starchy                           sensible to use a vitamin supplement.
    ways but not all the suggestions you            carbohydrate group. And a by-product of                  Not all products are suitable for kidney
    read about ensure that you maintain a           protein is urea, which can leave you                     patients, so check with your renal unit to
    well balanced diet. You could eat four          feeling tired, sick and with a nasty taste               find out which ones they recommend.
    chocolate bars a day and lose weight,           in your mouth.
    but you will not be meeting your
    requirements for several nutrients. That
    is why dieticians adopt an approach of
                                                                               The eatwell plate
    encouraging you to eat sensibly and lose
    weight gradually.                               FRUIT and VEGETABLES                                            BREAD, RICE, POTATOES, PASTA
                                                    Five a day, we all know that. Two                               AND OTHER STARCHY FOODS
                                                    tablespoons count as a helping.                                 Five to seven helpings a day. Choose bread,
    We know it sounds dull and there are no
                                                                                                                    pasta, rice, potato, breakfast cereals,
    magic solutions on offer and no 10-day          Vitamin C, Folate, Fibre                                        crackers, iced bun, malt loaf.
    diet miracle that will see you sashaying in                                                                                                      B vitamins, Energy
    a disco or strutting along the beach!

    It also explains why renal dieticians work
    so hard to give as much variety as
    possible. They give daily allowances of
    foods high in potassium or phosphate
    rather than cutting out foods high in
    these altogether and offer alternatives
    when some foods are best avoided, and
    refer to chocolates as ‘treats’! Of course
    your kidney does not know whether your
                                                    MEAT, FISH, EGGS,                                                                       MILK and DAIRY FOODS
    potassium is coming from chocolate or           BEANS AND OTHER                                                                         Two helpings a day.
    fruit, but fruit contains vitamins, fibre and   NON-DAIRY                                                                               Choose low fat varieties
    anti-oxidants whereas chocolate does            SOURCES OF                                                                              of milk, yoghurt, custard,
    not provide much other than calories.           PROTEIN                                                                                 rice pudding. Buy
                                                    Two helpings a day.                                                                     individual pots to control
    A well balanced diet means one that             Include red meat.           FOODS AND DRINKS HIGH IN FAT AND/OR SUGAR                   portion size.
    provides our bodies with essential              Include fish twice a          Foods in this section are there because they do not
                                                    week.                                                                                             Protein, Calcium
    nutrients. To say we are what we eat is                                     really provide useful quantities of nutrients. They are
                                                        Protein, Iron, Zinc      not inherently ‘bad’ but neither are they much good,
    true.
                                                                               especially if eating them fills you up and makes it hard
                                                                               for you to eat enough of all the foods you really need.
    What do we need? Look at the plate                                         Look at the proportions again. If you can visualise your
    model picture and follow the different                                           food choices each day, the way the groups are
    sections to find out which group provides                                    illustrated on the plate reflects the relative amounts
                                                                                                  you should be eating.


8
            National Kidney Federation
                                                                                   with thanks to our sponsors

30th Annual Patients’ Conference 2008
N       E        W                  H         O         R        I       Z        O                  N           S


       Conference Report
    No sleeping legs at the NKF 2008 Annual          information emerged from these sessions.
    Patients’ Conference at the Chesford Grange      Over 20 manned product/service stands and
    Hotel in Kenilworth this year! Pilates teacher   KPA stands handed out information and gifts
    Gill Stansfield had the entire room full of      to the 400 of us who attended the
    delegates on their feet and swinging limbs to    conference and a wonderful Gala Dinner
    get the blood flowing amidst much hilarity.      rounded up a great day. For those of you
    After each informative session speakers          who did not make it, you can listen to many
    were happy to field questions from the floor     of the talks on the NKF website on
    and, as in previous years, valuable              www.kidney.org.uk/conf08/index.html




                                                                     NKF Chairman Ray Mackey
                                                                     welcomed all delegates and
                                                                     speakers to The Chesford Grange
                                                                     Hotel for the 2008 NKF Patients’
                                                                     Annual Conference and outlined
                                                                     what the day ahead held….namely a
                                                                     few surprises amongst what
                                                                     promised to be an excellent
                                                                     conference agenda.



                                                                                                                     9
     Conference Report
     Dr Paul Murphy Consultant in Intensive          disease in general practice since the           Morning Question Time
     Care Medicine at the Leeds General              introduction of automatic reporting of          Q Do you think the UK should adopt a
     Infirmary, Clinical Lead for Organ Donation     ‘eGFR’ (estimated glomerular filtration         system used in some US states whereby
     at UK Transplant (UKT) and a member of          rate, a measure of kidney function) with        by law the medical professions in ITU’s
     the Department of Health (DH) Organ             routine blood tests. Earlier referral should    have to ask relatives for organs to be
     Donation Task Force.                            mean that fewer patients actually need          donated?
                                                     dialysis. Interventions to treat high blood
                            The Organ                pressure and anaemia, together with             Response by Dr Murphy. The lever used
                             Donation                dietary and lifestyle advice (if followed!)     in the US to encourage referrals for
                              Taskforce              may be enough to slow or even reverse           potential donation remains largely a
                                                     the progression of kidney disease.              financial one; if the referral is not made
                                Dr Murphy has                                                        then the referring institution or non
                                written a            The HEMO study, which was a very                referring institution risks losing its
                                separate article     expensive project that looked at survival       entitlement to treat patients with Medicare
                               for Kidney Life       in patients on different 3xweekly dialysis      or Medicaid. In the UK the lever is
                              outlining the          regimes, found that survival could not be       regulation and the organisations that
                           findings of the           improved significantly by increasing the        monitor and regulate the performance of
                        recently published           amount of dialysis prescribed to the            the Trusts involved. This process of
     Organ Donation Taskforce Report – the           patient from a standard to a high dose.         monitoring or auditing activity will now
     main topic of his conference speech.            People began to realise that the problem        include an assessment of donation rates
     Please see pages 6 and 7.                       is not the treatment, it’s the gaps in          and more specifically any failure to refer
                                                     between. But to reduce the gaps, patients       patients who are considered on audit to
     Chief Executive Tim Statham asked               either need to dialyse overnight or more        have been suitable patients for referral.
     delegates to raise their hand if they           often. There are a few centres around the
     supported a change to the current system        world that now offer overnight, or even         Q I like the approach identified where you
     of ‘opting in’ (ie, where a person must         daily dialysis in the unit, but the ideal way   were saying that professionals need to
     register their agreement to become an           to reduce those gaps is to dialyse at           change. The question is about this
     organ/tissue donor after their death) to        home.                                           difference in approach and what do you
     one where an individual must register their                                                     think the Taskforce can do about the
     name if they DO NOT wish to participate         In Leeds, when we re-launched home HD,          current situation?
     in organ donation after their own death.        it was with the option for patients to
                                                     dialyse up to 6 times a week and most of        Response by Dr Murphy. We haven’t
     The majority supported a change.                them have chosen a 5-6 session per week         made it easy for ourselves in this country
                                                     where they dialyse for 2-3 hours per            and by this I mean the UK, we have got 4
     Dr Elizabeth Lindley                            session. The patients have more energy,         administrations, all of which have a
     Specialist Clinical                             are able to do more and can eat and drink       slightly different approach and some even
     Scientist in                                    more freely (though phosphate control           have different laws. I think it is all well and
     Renal Care at                                   remains a problem). Use of ‘buttonhole’         good to say that doctors have a right to
     St James’s                                      needling should mean they don’t have            autonomy, but there are limits to that
     University                                      additional access problems despite the          autonomy and if the doctor does not wish
     Hospital                                        extra sticks. No-one has voluntarily gone       to be involved with donation after death
                                                     back to conventional 3xweek dialysis. A         then that is fine - you would wonder why
     The future                                      recent publication by Dr Carl Kjellstrand       they were in Intensive Care - but the
     of dialysis:                                    suggests that patients on short daily           doctors stance should not be an obstacle
     What’s new                                      dialysis (4 times a week or more) have          to an individual donating. For instance,
     and what can we                                 survival rates that are almost as good as       I’m a Roman Catholic and I have issues
     look forward to?                                those of a similar age who have a               over abortion. I would not anaesthetise a
                                                     functioning transplant.                         patient to have an abortion, but I would
     Perhaps the best news I have is that we                                                         not stop it. I would stand aside and allow
     are finally seeing a reduction in the           Of course the machine can never do as           the process to be conducted by another
     number of ‘crash-landers’. These are            good a job as a functioning kidney and it       and the same goes for donation. If there
     patients who need dialysis less than three      has been shown in many studies that a           are true ethical objections then these of
     months after their first visit to the           little bit of kidney function is associated     course should be respected, but that
     nephrology unit, giving little or no time for   with a large reduction (10 times lower in       should not obstruct the wish of a patient
     the patient to make an informed choice of       one study in the relative risk of mortality.    to donate in the event of their death.
     the type of dialysis they prefer or for a       In PD, preservation of kidney function has
     fistula to be created if necessary. Audits in   always been considered important but in         Gill Stansfield - Pilates Session
     the mid 90’s and in 2001 showed that            HD it is usually ignored. Most units don’t      Gill then urged everyone to take off their
     every year 40% of patients who started          even measure it.                                shoes, stand up and prepare for some
     dialysis in Leeds crash landed and that                                                         exercise...and to loud music the entire
     the mortality rate in the first year of         Optimum treatment of HD patients really         conference hall took
     dialysis was twice as high as in the 60%        should include taking care of any               to its collective
     who had been known to the unit for              remaining kidney function by using              feet and
     longer. An informal audit of the new            biocompatible dialysers, high quality           partook in an
     starters in Leeds over the last 12 months       dialysate, not dehydrating the patient by       energetic
     suggests that the proportion of                 removing too much fluid, going to twice         pilates
     crash-landers has dropped to about 20%.         weekly HD if the kidneys are working well       session!
                                                     enough and avoiding blood pressure
     This is almost certainly due to the             drops during dialysis.
     increased awareness of chronic kidney



10
8
                                                                                                  Conference Report
Dr Paul Stevens                                    The development of cardiovascular              hospital. My timing could not have been
Consultant Nephrologist Kent and                   disease in CKD starts quite early on           better because as I was being admitted
Canterbury Hospital, and President of the          because CKD is associated with an              on New Years Eve 1967 a brand new
British Renal Society.                             increase in prevalence in cardiovascular       dialysis unit had opened on New Years
                                                   disease (CVD) risk factors. CKD itself is      Day 1968.
                         The Healthy Heart         an independent risk for CVD, and CVD
                                                   risk factors like diabetes and hypertension    Acceptance is a big thing and we all know
                             My brief today        promote the progression and                    that as kidney patients. Once you realise
                               is to talk to you   development of CKD, and finally                that you cannot go back on the condition
                                about ‘the         cardiovascular disease is a risk factor for    then it is how you move forward from
                                healthy heart’.    CKD. So you have a vicious circle set up       there. I found that my heart attack did
                                What we need       that continues revolving unless we do          affect my confidence, maybe more than
                              to do first is to    things to change it.                           my kidney failure. I kept thinking should I
                             consider what a                                                      do this? Should I do that? Being able to
                           healthy heart           Taking exercise and controlling obesity are    talk to professionals about that was very
                         does, then what we        both very important factors in the quest to    important to me.
                  tell you about heart             achieve and maintain a healthy heart. As
disease, what happens to the heart in              for obesity, a colleague of mine, Norbert      Adjust and adhere. We have our own
chronic kidney disease (CKD) and some              Lormare, a Belgian nephrologist is very        responsibility for own lives to a degree
unpleasant facts about the unhealthy               fond of saying when he speaks in Japan         and we are only cheating ourselves if we
heart in CKD. Then we will look into what          that McDonald’s is a terrible revenge for      fail to do so. Adjusting may bring you
your risk factors are and what you can do          Pearl Harbour!                                 challenges but always try and see the
to avoid vascular heart disease and keep                                                          positive in it. One of the positives for me
your heart healthy, and what your doctors          So, these are the important things to          was that I had a very good physio as part
should be doing to help you do that. The           remember. If you want a healthy heart,         of my follow up outpatient course and at
heart, as you know, is a very complex              stop smoking, lower your cholesterol,          one stage in the early 2000’s I was
organ, but it is also just a pump. It is two       exercise regularly, control your weight,       actually quite fit and slim… you might not
pumps in one and has four chambers and             control blood pressure and also your           believe it now but it actually was the case!
two entrance chambers or atria that                sugar intake if you have diabetes, take
receive blood from the body. To regulate           preventive treatment, but above all else       When I was preparing my talk I was given
this flow we also have an electrical system        you need to start as early as possible in      access to my own medical notes
within the heart and this controls the             the course of your kidney disease.             stretching way back to those early days
timing and maintains that regular rhythm                                                          and I found a quite stark entry from one of
by adjusting the rate in which the heart           Dennis Crane MBE - patient speaker,            the doctors who examined me in those
beats.                                             NKF Advocacy Officer                           early days in January of 1968 and all it
                                                                                                  said was ‘the prognosis for this boy is
There are three very basic types of heart          I wouldn’t do it like this if I were you!      very poor’! Well 40 years on this boy is
disease. The first is blood vessel disease                                                        delighted to be here and very much
where parts of cholesterol start to form                             Dennis gave a humorous       appreciates each day.
underneath the lining of the artery, and                                  and informative
when we ask our heart to work harder we                                       account of his      Afternoon Question Time
suffer symptoms of the blood supply                                             experiences as
being impaired, namely chest tightness                                           a patient who    Q What does low blood pressure do to the
and or exercise-induced shortness of                                             ‘crash landed’   heart?
breath. As these areas of cholesterol in                                          into the
the lining of the arteries progress, they                                        system and       Response by Dr Paul Stevens. The
begin to fissure and crack and this                                              how his heart    answer is you need to know the cause of
potentially leads to a heart attack or                                          attack in 2000    the low blood pressure. If the cause of
angina. The impaired function of the heart                                    and subsequent      your low blood pressure is a damaged
constitutes ischeamic heart disease.                                       recovery affected      heart with a tendency to heart failure, then
Then we have heart failure and because                                his attitude to life.       probably treatments like beta-blockers
the heart is a pump anything which                                                                and ACE inhibitors are important to you,
compromises the efficiency of the heart as         Let me begin with a bit of background          but if the cause of the low blood pressure
a pump can potentially lead to heart               information for those of you who have not      is simply that you are over treated then
failure. Things such as ischaemic heart            met me before. I was born in 1948 the          the important thing is to back off on
disease, hypertension, diseases of the             year the NHS was founded, so two good          treatment.
valves that control movement of the blood          things came out of the year! I was
through the heart, and disease of the              identified with established renal failure in   Q If you had high cholesterol and were
heart muscle itself.                               1967 and I say identified, because I was       able to get it down, is the lining of the
                                                   one of those people who crash landed           arteries then cleared or will the lining
And finally we have the disorders of the           into the system and some ten years             always be impaired?
conducting system, so this would include           previously my parents had taken me to
a diseased electrical system of the heart.         see the GP with the first symptoms of          Response by Dr Paul Stevens.
This can lead to either a slow or a fast           kidney problems and he said I just had         Unfortunately it is always impaired and
heartbeat or even simply an irregular              growing pains, which is a bit ironic as I am   what you are looking to do when lowering
heartbeat. The point about any of these            only five feet four now! I collapsed on        cholesterol is to keep it controlled. Some
altered rhythms is that they disrupt the           New Years Eve at home and fortunately          people have an alarming tendency of
heart’s vital orderly sequence and affect          for me the other GP in the practice came       stopping statins when their cholesterol
the amount of blood that gets pumped               out to see me and wasn’t sure what was         becomes under control and believe that
around the body in any one minute. And             wrong, but it certainly was not just a bug     their problem is now sorted. The way to
this can lead to heart failure.                    and I was whisked into A&E in the local        completely regress your linings is to live


                                                                                                                                                 11
     Conference Report
     like a hobo under a bridge somewhere, on          dialysis in their own unit and compare it to   So what about the future? There are
     a diet of cheap sherry. Because at post           neighbouring units – several hands were        alternatives on the horizon and the one I
     mortems they have pristine arteries. Not          raised.) I urge you all to sit down and look   am most excited about is in phase 3 of
     perhaps advising you to do that, of               at what is being achieved elsewhere and        clinical trials. We think this is quite an
     course!!                                          ask for that within your own units.            exciting development because Hematide
                                                                                                      is stable at room temperature, doesn’t
     Q If you start dialysis after you are 70                                                         have to be kept in a fridge, is much
     years of age, how long can you expect to          Dr Iain MacDougall                             cheaper to make and is not a protein so it
     live on either dialysis or transplant? Also       Consultant Nephrologist and Honorary           doesn’t require that complex
     is it possible to have a transplant at all at     Senior Lecturer Kings College London           manufacturing process.
     this age?
                                                       Anaemia, EPO and Biosimilars                   I think and I hope that you have got the
     Response by Dr Paul Stevens. Well age                                                            message that anaemia treatment in CKD
     is a co-morbidity unfortunately, and it will                               I am sure if you      has come a long way in the last 20 years
     also depend on what your other                                                asked any          and gone are the days of dependency on
     co-morbidities are. But your survival is                                        Nephrologist     frequent blood transfusions. EPO agents
     going to be better with good                                                     what the        are highly effective, and newer and longer
     transplantation than it is with dialysis.                                        most            acting agents are becoming available
                                                                                      important       requiring less frequent injections. Clearly
     Q First of all I’d like to thank you for giving                                  organ in the    the ultimate is to try and take tablets for
     my wife a lot of ammunition to get at me                                         body is, they   anaemia, but I think we are still at least 15
     when we get home about lack of exercise                                         would tell you   to 20 years away this point. We also now
     for my heart condition! The problem I                                         that the most      have safer intravenous iron products, and
     have concerns the length of time that                                      important organ is    as with all branches of medical practice
     elapses for communication to get between                              the kidney… and they       there are medical advances and still
     the cardiology and the renal departments.         are absolutely right of course! And if you     newer developments which will be
     From Dennis’s point of view and I will            ask a Cardiologist or Neurologist you may      available in the next 5 or 10 years.
     finish on this, I think hearing Dennis’s          get a different answer. By and large the
     experience as a person recently                   kidney is the most important organ in the
     diagnosed with angina has been an                 body, and I am sure you are aware of that.     Rosie Savage – patient speaker
     extremely helpful one.                                                                           Rosie was diagnosed with lupus, suffered
                                                       The reason is that the kidney does so          renal failure for which she received
     Response by Dr Paul Stevens. Donal                much. Everybody knows that it produces         dialysis before receiving a transplant in
     O’Donoghue would want to tell you about           urine and by so doing gets rid of the          2003.
     the 18 week pathway - it is there to be a         waste products from the body and that is
     bit of a stick to make us in renal units do       probably what the man in the street would      Biosimilars my Choice
     the things that you are saying hasn’t been        tell you what the kidney does. In fact the
     happening. Things like getting proper             kidneys are remarkable organs as they do
     communication done in a timely fashion.           a whole load of other things too: red cells                             I want to talk to
     The second response is that what I have           development, maintaining healthy bones,                                   you about
     learnt in the last two years; at last year’s      controlling salt and water balance and of                                  biosimilars and
     conference and this year’s conference, is         course your blood pressure too.                                             what I
     that a darned sight more doctors and                                                                                          understand
     nurses from the units should come and             So the kidney does a huge number of                                         about them
     listen to what you have to say, because           different functions and for the purposes                                    and what I
     they would learn a lot if they did!               of today I am just going to talk about the                                 expect of these
                                                       red cell development function of the                                      new EPO
     Dr Donal O’Donohue - Renal Tsar                   kidneys. The kidneys produce a                                         stimulating agents.
     Thank you very much for inviting me to            substance called EPO and this helps the
     this important conference in the ‘kidney          bone marrow produce red cells, which           Cast your mind back to the dim and
     calendar’. For this really very important         then feed back to the kidneys through          distant past of the 1980’s; it was a time of
     event you all have a copy of the Dialysis         oxygen signals, and switch off EPO if          the New Romantics, plum lipstick, heavy
     Manifesto on your chairs. As You know             there are too many red cells in the blood.     mascara, frilly collars, Duran Duran and
     this is the 60th anniversary of the NHS; a        I don’t know if you are aware of how many      that was just the boys! I was a teenager
                         fantastic institution, but    red cells are made in the body; but it is      at the time and had been away to the
                            it does need to up         anything from 2 million up to 22 million       Welsh coast for a holiday. When I got
                               its game                new red cells every second in normal           back home I had a facial rash like sunburn
                                 somewhat,             health, and if you are on EPO you are now      that refused to go away, my joints swelled
                                  particularly         probably making the same number.               up and my hair fell out. After months of
                                  when it comes                                                       being sick and tired and having many
                                  to dialysis          The strategies for treating anaemia have       tests I was finally diagnosed with
                                  services.            changed over the years. In the early part      Systemic Lupus Erythmatosus which is an
                                                       of the 1990s EPO was only given to             auto-immune disease where your body
                               This is a very          dialysis patients, then in 1998 came the       produces antibodies to itself, and
                             important                 concept of starting EPO at an earlier stage    damages various bodily organs along the
                         document. How many            of CKD development and trying to correct       way. I was left with reduced kidney
     of you actually look at the quality of            anaemia before the patients were on            function, high blood pressure, anaemia,
     dialysis that is being delivered in your own      dialysis. Then finally there was a study set   arthritis and the overwhelming tiredness
     units? (Delegates were asked to raise their       up to look at ways to prevent patients         that accompanies Lupus. Over the course
     hand if they did check the quality of             ever becoming anaemic.                         of the next two decades I had several


12
                                                                                                   Conference Report
flare-ups of the Lupus. I was an in-and         diet to aid absorption with a view to              Juliette Reeves - Dental Hygienist
outpatient and had lots of tests, bags of       increasing natural EPO reserves will work,         and Nutritionist
blood and iron and was on lots of different     I am not so sure. That’s the best I can do.
drugs. By 2002 my kidneys had                   I don’t think there is anything scientific in      Dental Care
deteriorated until I was injecting EPO once     there.
a week and I then went on to HD for a                                                                                        What I have been
short while, whilst my sister was being         Q Donal - a particular question for you,                                        asked to talk to
tested as a suitable donor.                     about Healthcare programmes. There are                                           you about this
                                                sometimes situations where Trusts do                                               year is Dental
I then went on to to have a very                some things independently and others are                                            Health in the
successful transplant in 2003. I have           done on a national basis. Will these                                                renal patient.
continued on EPO ever since and I have          healthcare programmes be done centrally                                             Before I do
changed the brand once and the dosage           for use by all of the Trusts or will each                                          that I can tell
several times. I inject just once every two     Trust be responsible for producing its own                                        you a little bit
weeks and I am able to work full time.          programme?                                                                      about myself.
                                                                                                                             As you have heard
It is 20 years since the biologic EPOs were     Response by Donal O’Donoghue. I                                          I am a dental hygienist.
first produced and subsequently used in         think that centrally we can set the                When I am not being a dental hygienist
the UK for the treatment of anaemia, of         framework and centrally we can look at             however I too am a renal patient. I have
CKD and some cancers. The patents of            regulation. I am looking for much higher           PKD, which was diagnosed when I was
some of these have now expired and the          standards now and those can only really            about 26. I am a haemodialysis patient
market is soon to be shaken up with the         be delivered by local teams. Therein we            and I am looked after very well by the
arrival of new EPOs, which have been            still have problems such as ‘post code             clinical staff at the Peterborough General
introduced across Europe and are known          prescribing’ and internal difficulties within      Hospital, who are very patient with me,
as biosimilars. Unlike standard generic         departments and Trusts. I think                    because as you can imagine, it is a
drugs which are copies of existing              information is the answer. If you get the          nightmare trying to treat a medical person.
chemicals, biosimilar products are              information out there then that is the way
complex biological and molecules similar,       we can drive change and quality.                   So why is oral health so important to the
but never identical, to established EPO,                                                           renal patient and haven’t we got enough
and they are made to the same exacting          Q I have been transplanted 10 years now            to be coping with at the moment already?
standards as EPOs.                              and take EPO twice a week, which pushes            Well, there are lots of reasons really and
                                                up my blood pressure. Is there any                 the main reason is because there is a
I wanted to think about what I would            evidence indicating that any one particular        connection between the health of the
expect of these new biosimilars and came        brand of EPO, including the biosimilars,           mouth and the rest of the body. For many
up with this list; communication,               would not affect me in this way?                   years now we as a profession have fully
information, safety and availability.                                                              understood that clinical diseases and
                                                Response by Dr MacDougall.                         systemic diseases of the body do make
If the healthcare communities want me to        Unfortunately, currently the blood                 things more difficult in the mouth.
take a different drug for my renal anaemia      pressure problem with EPO affects
then I want to know that it provides the        roughly 20% of patients and is common              However, in the last tend years
same or increased benefits of my current        to all the EPOs, so there is not one EPO           research is showing us that bacteria and
regime and my current quality of life. I will   that is less likely to push your blood             chronic gum disease in the mouth can
want to be in communication with my             pressure up.                                       actually travel around the body and
renal team and informed about the drug                                                             produce other conditions as well as other
and why I am changing. I want to know           Q I inject myself with EPO once a week.            diseases. So the effect actually works
that it is safe and easier to use, easier to    When I have been abroad on holiday I               both ways. The reason for that is that the
be obtained and easier to store.                have seen patients being given EPO                 bacteria that cause gum disease are really
                                                directly into the lines of their dialysis          very nasty anaerobic bacteria and what
I hope that the introduction of these drugs     machine and I would like to know your              we are realising now is that they are not
into the ever expanding cornucopia of           opinion of the two methods of delivery.            just confined to the mouth. They do
drugs that we have available will be a          Personally, I find one painful and the other       actually travel around the body and get
positive benefit to us all. I want to thank                                                        into the blood stream. Once they do start
                                                one attractive!
my sister Margy for giving me my kidney                                                            travelling around the body of course they
and my fab renal team for looking after                                                            are in position to set up inflammation,
                                                Response by Dr MacDougall. Well the
me.                                                                                                infection and disease in other body tissue
                                                evidence for darbepoetin alfa is that it
                                                                                                   and organs. For us as renal patients that
                                                doesn’t matter whether you give it as an
Q A few months ago I was at an event                                                               is a really important thing and if we keep
                                                injection in the skin or intravenously, the
where I heard a presentation extolling the                                                         our mouths nice and clean and healthy we
virtues of a raw food diet. The presenter       dose requirements will be exactly the              are therefore at a decreased risk of
made some extraordinary claims about the        same - it will work just as well and the           infections. As you know, as a renal
impact of living solely on raw food - fruit     side effects will just be the same. That is        patient our immunity is slightly
and vegetables - and made very specific         different from the others (epoetin and             compromised so that becomes even more
claims about its effect on red blood cells. I   epoetin beta) requires much less drug if           important. And of course if we are a post
just wondered if you had any comments           given in the skin, about 30% less than in a        transplant patient taking medication,
about this and whether these claims have        machine. That means in the UK, which is            again we are a little bit more prone to
any kind of scientific basis?                   a very cost sensitive healthcare system            things like oral thrush and dry mouth
                                                that we use a lot of skin injected drugs           symptoms.
Response by Dr MacDougall. I think              whereas, in France and Germany they
that there are some foods that have iron in     give virtually all their dialysis patients their   Instead of skimming through all of those
them which may be better absorbed than          EPO through the machine irrespective of            conditions, what I thought we could do is
others. Whether including them in your          the higher cost.                                   concentrate on dry mouth and what we

                                                                                                                                                     13
     Conference Report
     can do as individuals to help ourselves         Number two is really good oral hygiene         I clearly do not have time to recount my
     and stop dry mouth from becoming a              and I think this is where sonic                medical journey in its entirety; it’s already
     problem and creating other problems in          toothbrushes come into their own. The          the length of a book and we’d still be here
     the body.                                       difference between a sonic toothbrush          at midnight. The only statistics I will give
                                                     and an ordinary bristle toothbrush is that     you today are: during the decade that was
     So what is dry mouth? Well it can be a          the sonic toothbrush the head stays            my 30s as the kidney failure resulting from
     number of things, it could be the absence       static, but the bristles vibrate at a sonic    diabetic nerve damage reached the point
     of saliva at all where we have some             frequency and this creates lots and lots of    where I required dialysis, I spent well over
     salivary glands for what ever reason have       air bubbles in the water and that way it       a year in hospital, had approximately
     been destroyed or they are not working          cleans your teeth and also our saliva.         30,000 injections/blood tests or IV drips
     properly and they are not producing saliva      Effective plaque removal then is achieved      and passed the equivalent of several artic
     at all. Or it can be a reduced salivary flow    by sonic frequency so for the dry mouth        lorry loads of vomit and diarrhoea….. I do
     so the salivary glands are still working, but   patient a sonic toothbrush is a good idea.     not want to be that person ever again.
     they are not producing as much saliva as
     they used to.                                   In order to minimise the effect on our lives   My diabetes has affected all my personal
                                                     as renal patients we need to first get a       relationships. My wonderful parents have
     Finally it may be inadequate saliva             proper assessment, preferably from our         spent my lifetime worrying about me;
     production due to outside influences,           dental practitioner or hygienist. Secondly     shipping me off to hospital when hypos
     such as medication or a side effect of a        we need to put into place a really good        left me unconscious and flailing around
     treatment.                                      preventative home care regime. And lastly      deliriously during the night as a child,
                                                     if we are still not getting relief from our    going without the little luxuries in life so
     Then why are renal patients so prone to         symptoms we need to seek effective             that I always had nice pyjamas for the
     it? Well first of all there are lots of         treatment and in doing so not only will this   weeks and weeks spent in hospital, and
     medications whose side affects are dry          affect our quality of life and improve our     as an adult when my marriage and kidney
     mouth; things like diuretics, blood             dental health, it is also going to improve     transplant failed within months of each
     pressure tablets and some antibiotics and       our overall health too.                        other, when I needed to be transported to
     some pain killers and all of us at one time                                                    and from the dialysis unit on the days I
     or another will have been taking those                                                         was not up to driving myself. And I am
     medications. We are also particularly           Deborah Duval – Patient Speaker                very aware that in my adult life my
     prone if we are HD patients because our         Editor of Kidney Life and multi-transplant     combined kidney failure and diabetes has
     fluid intake is restricted. If there is less    recipient (a pancreas and kidney in 1994,      really sorted the men from the boys.
     fluid in the body there is going to be less     a second kidney in 1999 and a second
     saliva production.                              pancreas in 2008)                              How do I want to see things change?
                                                                                                    Specific to diabetes, I want to see a day
     Also dry mouth is very much a feature of        Diabetes - too many pricks!                    where the possibility of pancreas
     poorly controlled diabetes and so if                                                           transplantation is at least discussed with
     anyone is a renal patient and has diabetes                                                     patients at a very early stage in their
     also then that is a double whammy! Again                                                       diagnosis; preferably at the time when
     a lot of post transplant drugs also have                                                       insulin injections, diets and the longer
     side affects which include dry mouth and                                                       term future is discussed.
     they also change the balance of bacteria
     in the mouth, which again can make the                                                         I am flabbergasted at the lack of general
     mouth dry and cause other problems..                                                           awareness of this procedure. I know
                                                                                                    whole organ transplantation is not for the
     So what are the risk factors in not having                                                     fainthearted and I know many are quite
     enough saliva? First of all the difficulty                                                     content to take the injections, do the daily
     eating, secondly difficulty speaking and                                                       blood tests and follow the diet, knowing
     difficulty swallowing, and we become            By the end of this I hope I will have helped   that much long term damage is being
     more prone to ulceration because the            you understand three things:                   wreaked internally - and that is absolutely
     mucus membrane isn’t lubricated enough.                                                        fine.
     There are lots of things we can do and          1 - How I believe this horrible condition
     what I really want to do today is focus on      has changed the course of my life; the         But to not discuss this amazing
     the practical side of things and what we        enormous impact it has had on me as an         opportunity with those who might want to
     can do as patients at home ourselves.           individual; as a woman, a friend, a            experience the wonderful feeling of
                                                     daughter, a sister and an employee. It has     liberation and genuine exuberant energy
     Number one on the list has to be to stop        affected me, and therefore also the people     and health that I now feel - right down to
     smoking if you are a smoker. Smoking is         closest to me profoundly, in every             improved eye sight and a settled digestive
     an absolute disaster for the mouth apart        conceivable way - physically, emotionally,     system - is cheating those who would
     from the rest of the body. When someone         socially, professionally, and                  most benefit from it. This hindering
     puts a cigarette in their mouth the main        psychologically.                               ‘mystery’ surrounding this treatment
     toxicity occurs here because that is where                                                     option must change.
     it all starts. A cigarette is very hot and it   2 - Why I have made some of the
     creates heat in the mouth and although          seemingly extreme or dramatic decisions
     you may not feel like your mouth is hot, it     about opting for transplantation to treat
     is heating up the oral tissues to a very        my diabetes, when there are several, far
     high degree and this causes the little          less invasive alternative treatment options
     blood vessels to close down and reduces         available.
     the blood flow. Where there is a reduction
     of blood flow you will also be more prone       And 3 - In what ways I would like to see        N   E   W      H   O   R   I   Z   O   N   S

     to disease and infection.                       things change.


14
This was the first randomised, double-      patients with CAN and impaired renal        is uninsured or who cannot afford their      improved by cognitive behavioural
blind, placebo-controlled study to          function were randomly assigned to          treatment.                                   therapy and this may help to reduce
compare early steroid withdrawal            continue on ciclosporin or to convert to            International Journal of Health      use of sleeping tablets. Although
(seven days after transplantation) with     tacrolimus. After five years follow-up,                   Services 2008;38:641-52        kidney transplantation corrects some
continuing low-dose steroid therapy (5      there was no difference between the                                                      sleep problems such as ‘restless legs’,
mg/day from six months after                two groups in graft and patient             Delayed graft function and acute             it does not always correct sleep
transplantation). After five years, there   survival, CAN, or acute rejection.          rejection after transplantation can          apnoea. The author of this review
was no difference between the groups               Transplantation 2008;86:953-60       affect the long-term survival of the         recommends research to study the
in the risk of death, graft loss or                                                     kidney. In this study, postponing the        effects of sleep problems in kidney
moderate/severe acute rejection. There      In this Swiss study, which included 48      introduction of ciclosporin in children      patients.
was a higher rate of acute rejection in     potential living kidney donors, CT          receiving triple immunosuppressive                     Current Opinion in Pulmonary
the steroid withdrawal group, but this      angiography and MR angiography              therapy (steroids, ciclosporin, and                        Medicine 2008;14:543-50
was mostly mild and responded to            were equally accurate in imaging the        mycophenolate         mofetil)      plus
steroid treatment. There was no             blood vessels of the kidney as part of      basiliximab induction did not reduce         In England, blood pressure monitoring
difference in kidney function at five       preoperative assessment.                    the occurrence of delayed graft              and     control      have    improved
years, but steroid withdrawal was                 Transplantation 2008;86:1249-56       function. There were fewer acute             substantially since 2004, when the
associated with better triglycerides (a                                                 rejections in the delayed ciclosporin        new GP contract began to include
type of bad cholesterol), less weight       This open-label study demonstrated          group, but this did not influence results    performance indicators and pay for
gain, and less need for insulin to treat    that, whether combined with                 two years after transplantation.             performance.      Moreover,       these
new       onset      diabetes       after   ciclosporin or tacrolimus, sirolimus was        Transplantation 2008;86:1199-205         improvements have been accompanied
transplantation (NODAT) (though the         equally effective during the first year                                                  by the near disappearance of the gap
proportions of patients needing             after transplant in high-risk kidney        Ferumoxytol is a new intravenous drug        in performance between the least and
treatment for NODAT were similar in         transplant recipients (black and/or         that is being studied as an alternative      most deprived areas of the country.
the two groups). The authors conclude       repeated transplant recipients, or with     to intravenous iron in the treatment of                      British Medical Journal
that treatment with tacrolimus,             high levels of antibodies). The US          anaemia of chronic kidney disease                                   2008;337:a2030
mycophenolate mofetil and induction         authors report that in the two groups,      (CKD). In this US study of 750 CKD and
therapy     allows      early    steroid    there were similar rates of graft           dialysis patients, ferumoxytol was well      This US study found that 37 per cent of
withdrawal with results comparable to       survival, low rates of acute rejection,     tolerated and had a safety profile           children with chronic kidney disease
long-term, low-dose steroid therapy.        excellent kidney function, and an           similar to placebo. The most common          (CKD) had high systolic or diastolic
    Annals of Surgery 2008;248:564-77       acceptable safety profile.                  side effects included symptoms related       blood pressure, and of these 39 per
                                                  Transplantation 2008;86:1187-95       to the injection/infusion site, dizziness,   cent were not receiving treatment,
The      Fixed-Dose      Concentration-                                                 itchiness, headache, fatigue, and            indicating that high blood pressure
Controlled Trial compared standard          These Dutch authors analysed the            nausea. There were no meaningful             may be often under- or even untreated
fixed-dose mycophenolate mofetil            occurrence       of     post-transplant     effects on blood pressure after              in these patients. The authors consider
(MMF) with dosing based on target           cardiovascular disease (CVD) in 2187        administration of either ferumoxytol or      that treatment with angiotensin-
blood levels (concentration-controlled      kidney transplant recipients to try to      placebo.                                     converting enzyme inhibitors or
MMF) in 900 new kidney transplant           identify any pre-transplant risk factors.      American Journal of Kidney Disease        angiotensin receptor blockers may
recipients. There was no difference in      Pre-existing diabetic kidney disease                                2008;52:907-15       improve blood pressure control in
the risk of treatment failure between       (nephropathy) and CVD were the most                                                      children with CKD.
the concentration-controlled and the        important risk factors, together with       Kidney failure is becoming more                         Hypertension 2008;52:631-7
fixed-dose groups. There was, however,      length of time on dialysis, age and         frequent in HIV-infected patients, but
a significant relationship between          body mass index. The authors conclude       there has been little information about
MMF blood levels three days after           that early treatment of CVD risk factors    HIV-infected patients on dialysis in
                                                                                                                                        Want to know more?
                                                                                                                                        The source of the studies is listed as
transplantation and the risk of acute       and pre-transplant evaluation might         Europe. This 2006 survey of 328
                                                                                                                                           the title of the journal, year of
rejection in the first month or the first   improve          outcomes          after    Spanish dialysis units found that 0.54              publication, volume, and page
year after transplantation. The authors     transplantation.                            per cent of patients had HIV. Of these,           numbers. For more details on an
believe that their protocol of MMF                   Transplant International 2008;     39 per cent met the criteria for                         individual study, go to
dose adjustment was unsuccessful                                          21:985-91     inclusion on the kidney transplant list                www.ncbi.nlm.nih.gov/
partly because doctors seemed                                                           but only 12 per cent were listed. The 61                   entrez/query.fcgi
                                                                                                                                          In the left-hand column, click on
reluctant to make substantial changes       It seems that, although many                per cent of patients who were also
                                                                                                                                      ‘Single Citation Matcher’, complete the
in dosing. They add that, based on their    Americans without health insurance          infected with hepatitis C had a longer         boxes (‘Journal’, ‘Date’, ‘Volume’ and
study, MMF doses early after                donate organs, they rarely receive          history of HIV, more previous AIDS                ‘First page’) and click the Search
transplantation may be too low in over      them. In this nationally representative     events, and less access to the                                   button.
35 per cent of patients, increasing the     sample, 16.9 per cent of donors but         transplant list.
risk of acute rejection.                    only 0.8 per cent of recipients were          AIDS Research & Human Retroviruses          There may be a link to enable you to
      Transplantation 2008;86:1043-51       uninsured.     Furthermore,       when                             2008;24:1229-35       download the complete article, but this
                                                                                                                                         may involve payment of a fee.
                                            compared to other hospital in-patients,
This randomised study from Canada           organ donors were much more likely to       Although poor quality sleep is known
tested the theory that conversion from      be insured, while transplant recipients     to be common in people with kidney
                                                                                                                                      Don’t try this at home!
                                                                                                                                      Any changes to treatment reported in
ciclosporin to tacrolimus might             were much less likely to lack coverage.     failure, it is not only under-diagnosed
                                                                                                                                        Medical Matters were carried out
improve long-term outcomes in kidney        An US Act of Congress states that           but is also associated with sleep            under medical supervision. Never make
transplant recipients with chronic graft    transplants should be available             apnoea (episodes of stopping                     changes to your medication by
damage         (chronic        allograft    regardless of a person’s ability to pay,    breathing during sleep). There is             yourself. If you are worried about your
nephropathy; CAN). A total of 106           but few centres consider anyone who         evidence that sleep quality may be           treatment, talk to your renal unit team.



                                                                                                                                                                                 15
                              an
                         sm
                       os                                           journey to Canterbury three times a                  A wonderful account of her daughter,




                                                                                                                                                                          PEOPLE
                   l
                                                                    week. Then one day Dr Paul Stevens                   Layla, and Alan’s wedding has been
                 rF
               he
                                                                    said "why not do home dialysis?" So my               sent into us by Mrs Ros Gardiner.
            op

                                                                    wife Anne (an ex nurse) and I trained in
     Christ



                                                                    Canterbury. We now have a little
                                                                    sunroom on the back of the house which               A fairy tale
                                                                    we call our ‘clinic’. When it is not in use
                                                                    we pull the curtains across and forget it            ending
                                                                    is there. Paula Deblin is only a phone               I just wanted to send you this
                                                                    call, or these days an email, away. We               photograph of my beautiful
                                                                    are very fond of Paula; she has been a               daughter Layla on her wedding day
                                                                    great help. So I made up my mind to                  to give hope and inspiration to any
                                                                    think positive! Not everyone can do this.            young kidney patients.


        Game-on Chris!                                              With a little help from Anne I have started
                                                                    gardening again, started fly fishing for
                                                                    trout again and taken an active part in
        Debbie Flossman is a very proud mum
                                                                    our local church. I am still very keen on
        and has written to KL to tell us about her
                                                                    my photography and we go on holiday
        son, Christopher, who at 14 is not only
                                                                    every year. I had always wanted to fly in
        the first boy from Bristol to represent the
                                                                    a Tiger Moth with an open cockpit. It
        UK at the World Games, but is barely one
                                                                    was great and I had a busy time with the
        year past his second transplant.




                                                                                                                                                                   Alan
                                                                    camera! I find it best to forget the
                                                                    dialysis when not doing it and get on




                                                                                                                                                                   d
        Chris was born with bilateral urethral




                                                                                                                                                                an
                                                                    with living. I will be 80 in January and
        valves and bilateral pneumothorax which




                                                                                                                                                              la
                                                                    looking for something else to have a go




                                                                                                                                                           ay
        resulted in almost immediate kidney                                                                                                                 L
                                                                    at. Must go now as chickens need
        failure. After years of dialysis and many
                                                                    feeding and there are eggs to collect!
        complications Chris had a transplant
        when he was six years old and soon after                                                                         Layla was diagnosed with Focal
        this, and after a brief period of rejection,
        Chris was back at school and training
                                                                            Dialysing                                    Segmental Sclerosis at the age of three.
                                                                                                                         After suffering the effects of this for four
        with the Bristol swimming team, the                                                                              years, under the care of Dr Tim
        ‘Bristol Penguins’. After four years of
        gradual decline, Chris’ transplanted
                                                                           the plants                                    Chambers, at Southmead Hospital, she
                                                                                                                         was given a new treatment, which got rid
        kidney sadly failed and he was once                         Keith Brocklehurst sent us in some                   of the disease. The side affects of the
        again on dialysis and waiting for another                   interesting pictures of his ‘dialysing’              drugs caused her to loose all her hair at
        transplant. Fifteen months on Chris was                     plants. He explains:                                 the tender age of seven, but she was
        offered his second transplant which has                                                                          always cheerful. Gradually her life
        thankfully restored his health and helped                                             Keit                       became relatively normal and under the
                                                                                                  h’s                    careful management of Dr Tony Williams
        him maintain his training for the games,                                                      pl
                                                                                                         an
        as well as find the energy to participate                                                                        at Cheltenham Hospital, she reached her
                                                                                                          ts




        in many local and national campaigns to                                                                          teens in reasonably good health. Layla
                                                                                                              on




        raise awareness of the need for organ                                                                            managed to attain a very good degree in
                                                                                                               ‘dia




        donors.                                                                                                          English and Psychology but sadly in her
                                                                                                                   lys




                                                                                                                         early twenties the damage done to her
                                                                                                                   is’




        We all wish you luck at the games Chris -                                                                        kidneys in earlier years began to take its
        make sure we see some pictures of you                                                                            toll. She eventually had no choice but to
        and those medals!                                                                                                have haemodialysis at Gloucester
        All at the NKF.                                                                                                  Hospital.

                                                                                                                         The year that followed was very difficult.
        Living life                                                                                                      She was put on the transplant list but
                                                                                                                         after months of waiting, the call never
        By Ronald Giles                                                                                                  came. Layla had to work part-time but
                                   Ron
                                      ald                                                                                also did a Counselling Course, which she
                                            ‘lo
                                                  o                 I hate all the waste that we get left with           finished while recovering from her
                                                  p-




                                                                    after dialysis, going straight to landfill. I        operation.
                                                    th
                                                      e-l




                                                                    have asked my council if it can be
                                                         o




                                                                    recycled but they have refused.                      I was unable to donate to my daughter
                                                        op’




                                                                                                                         as I was the wrong blood group and my
                                                            Giles




                                                                    So I had the idea of putting some of our             husband had his own health problems.
                                                                    container plants on dialysis! I manage to            Layla’s Auntie Pam saw how her quality
                                                                    water six from each 3 litre bag of water             of life was deteriorating and offered to
                                                                    (obviously having flushed the empty bags             donate one of her kidneys.
                                                                    through first!). It’s easy to lengthen the
                                                                    tubes and so all you need to buy are                 The match was almost perfect, but
                                                                    some drip-feeder heads from the garden               despite this, the doctors at Southmead
                                                                    centre.                                              Hospital had to fight for over six weeks
                                                                                                                         to prevent serious rejection.
        My kidney failure started in February
                                                                    My plants are doing very well, and it
        1997 and at first it seemed like the end                                                                         After her transplant Layla secured a
                                                                    does relieve me some time.
        when I found myself doing the 25 miles                                                                           management position working for Social


16
               Services in Home Care. She felt she
PA G E S       wanted to work in this kind of                                                                       One Third / Two Thirds                                                                                                        giving someone back a life and then not
                                                                                                                                                                                                                                                  letting them live it. So I used to ride my
               environment, knowing first hand                                                                      By Bill Hargreaves                                                                                                            bike to the hospital and park it at the
               what it is like to be dependant on                                                                                                                                                                                                 bottom of the ramp. “Great,” I thought,
               the help and kindness of others.                                                                     11 June 1972 was the day of my                                                                                                “back on my way to a full life.”
               Just when Layla’s health began to                                                                    transplant. It was 18 days before my
               get worse, she met Alan, whose                                                                       18th birthday, hence the title One Third                                                                                      I married my long suffering wife in 1975
               constant optimism and                                                                                / Two Thirds. I was almost 18 when I                                                                                          and we have two daughters, Victoria, 28,
               encouragement saw her through                                                                        had my transplant and this transplant                                                                                         who has a daughter Lauren, 9, and a
               those very difficult years. After                                                                    has lasted for 36 years….so far!                                                                                              son, Harrison, 4, and Charlotte, 21, who
               seven years of being together, Alan                                                                                                                                                                                                has a son Hayden, 2.
               proposed to Layla and on 24 May                                                                                                                                                        Bill
                                                                                                                                                                                                           wit
               2008 we had the most ‘magical day’                                                                                                                                                              h   hi                             In 1978, I started in the British film
                                                                                                                                                                                                                      s
               when they were married in their local                                                                                                                                                                                              industry as a props-maker, working first




                                                                                                                                                                                                                          M
                                                                                                                                                                                                                           um
               church at Badgeworth.                                                                                                                                                                                                              on the film Alien and then on the Star
                                                                                                                                                                                                                                                  Wars trilogy. I have played Trivial Pursuits




                                                                                                                                                                                                                              an d
         As you can imagine, emotions were                                                                                                                                                                                                        with Madonna and Shaun Penn whilst in




                                                                                                                                                                                                                                 Dad
         running high, especially when our                                                                                                                                                                                                        Hong Kong working on the film, Shanghai
    guest of honour, Auntie Pam was                                                                                                                                                                                                               Surprise; had coffee with Jaclyn Smith in
    presented with a bouquet, as a very small                                                                                                                                                                                                     Zurich on the film Bourne Identity, and
    token of gratitude from all of us for her                                                                                                                                                                                                     been asked by Charlton Heston if he
    amazing courage. How can you ever                                                                                                                                                                                                             could be my second props-man – all in
    thank anyone enough, who has sacrificed                                                                                                                                                                                                       my 30-year career.
    so much?
                                                                                                                                                                                                                                                  I have met some wonderful people over
    At the church service we had a young girl                                                                                                                                                                                                     the years. But none can compare to the
    sing Eva Cassidy’s version of ‘Over the                                                                                                                                                                                                       unselfish people who allowed me their
    Rainbow’ and as the words in the song                                                                           In those early days dialysis was a long                                                                                       child’s kidney. Without that kind act I
    say, ‘dreams really do come true’!                                                                              affair. 14 hours a day and three days a                                                                                       doubt any of this would have happened.
                                                                                                                    week. I only did this for about nine                                                                                          If you are ever at clinic at St Mary’s, come
     Thanks for sending this in Ros - we know                                                                       months, but it felt like a full time                                                                                          and say hello!
          it will inspire many of our readers to                                                                    experience. After my transplant and lots
        persevere through the tough times….                                                                         of nagging by me, the doctors agreed to                                                                                                                  There’s a book in there Bill…
                                                                                                                    let me ride my beloved motorbike again.                                                                                                                                    get writing!
                                                                                       Deborah                      The doctors said that there was no point


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                                                                                                                                                                                           Signed...................................................................................................................................
       A will is a legal document, so it’s best to get the advice of a solicitor to
       make your instructions legally valid. To find a solicitor, you can look in                                                                                                          Date ......................................................................................................................................
       the Solicitors Regional Directory which is available in your local library.                                                                                                                                                The Point, Coach Road, Shireoaks
       The Law Society has a website at www.solicitors-online.com and you                                                                                                                                                        Worksop, Nottinghamshire S81 8BW
                                                                                                                                                                                                                                       Charity Number 1106735
       can get more information on wills on www.make-a-will.org.uk
                                                                                                                                                                                                       Please send or hand this coupon to your solicitor together with any specific
       The NKF Helpline on 0845 601 02 09 can also give you advice on how                                                                                                                               instructions in order that your wishes can be incorporated into your will.
                                                                                                                                                                                                                                    Many Thanks - NKF
       to include the NKF in your will.


                                                                                                                                                                                                                                                                                                                                         17
     £UNDRAISING FOR THE NKF    Coast to coast on a bike                                                made famous by Tim Woodcock, which has
                                                                                                        now become the ‘Holy Grail’ of UK off-road
                                                                                                        tours. It started at St Bees in Cumbria
                                                                Every year we get cheques
                                                                                                        (West Coast) and finished in Robin Hood's
                                                                     supporting the work of the
                                                                                                        Bay (East Coast) in North Yorkshire.
                                                                        NKF, raised by our
                                                                                                        The challenge required us to
                                                                           amazing supporters.
                                                                                                        complete an average of
                                                                             Sometimes we get                                              am
                                                                                                        43 miles per day,                Te
                                                                              HUGE cheques for




                                                                                                                                         er
                                                                                                        although on some




                                                                                                                                                                                          s
                                                                                                                                      Bik




                                                                                                                                                                                        as
                                                                               thousands of pounds




                                                                                                                                                                                      lP
                                                                                                        days we needed to                                                               i
                                                                               which help fund big                                                                                   Sa
                                                                                                        do considerably                                                        Black
                                                                               projects and
                                                                                                        more.
                                                                               sometimes we get
                               Shiv




                                                                              smaller amounts but
                                                                                                        It was very tough as
                                    at T




                                                                             EVERY single penny of
                                                                                                        you can imagine and it
                                        an




                                      ll                                   the cheques you send
                                           Hi




                                                                                                        felt like the weather was
                                                                        us is used to help kidney
                                                                                                        against us all of the time.
                                                                     patients here in the UK. YOU
                                                                                                        My team climbed about 28,000
                                                                are amazing and we thank you
                                                                                                        feet in total over the five days. We had a total of half a day of sunshine, the
                                very very much for giving up your free time to raise money for us.
                                                                                                        rest, well as you can imagine, was very wet and bleak, and out of the five
                                Without YOU we simply would not be able to run what is now
                                                                                                        days we had three starting the day in lashing rain.
                                the largest charity in the UK supporting kidney patients and their
                                families.
                                                                                                        In all the miles that the group did we got only one puncture. Three of us had
                                                                                                        to replace brake pads on the bikes before the ride and suffice to say they
                                Shiv Jobanputra wrote to the NKF enclosing a cheque for
                                                                                                        were burnt out after three days. This was because riding down mountains
                                £4670.44 (including Gift Aid)
                                                                                                        with rocks and boulders underneath was quite demanding on the brakes; so
                                                                                                        much so that at one stage the brakes were smoking! I have to say my
                                The reason why I have chosen the National Kidney Federation is
                                                                                                        brakes were fine up until the last day of the ride when they were worn out,
                                because my father suffered with kidney disease for many years
                                                                                                        so I resorted to just touching my front brake to slow down.
                                and passed away three years ago, and I feel that the NKF does
                                not get the recognition it deserves.
                                                                                                        Shiv - everyone here is amazed at the journey you and your friends made last
                                                                                                        August -.we are exhausted just looking at the photographs! Thanks so much
                                The challenge was to complete the UK Coast to Coast off road
                                                                                                        for doing this for the NKF - we really do appreciate it...and look forward to
                                route in five days. We started on 10 August 2008. This 218 mile
                                                                                                        covering your next fundraising trip for the NKF in Kidney Life!!
                                epic trip crosses three national parks and is based on the route


                                 Penny for the Guy!                                                Congratulations                             She remains well and active, and she
                                                                                                                                               does not need to take
                                 George Midgley and Connor Ware sent in the £6.44 they
                                 raised during their ‘Penny for the Guy’ day in November.
                                                                                                   Claudia!                                    immunosuppressive drugs to prevent
                                                                                                   A first for stem cells in organ             rejection of her new bronchus. The
                                 They want the money to go the NKF         Geo
                                                                               rge                 transplantation                             research team responsible for Claudia’s
                                 appeal because George’s                          ,C
                                                                                     on            by Sue Lyon                                 operation has applied for funding to do
                                 grandad is waiting for a
                                                                                                                                               windpipe and larynx (voice box)
                                                                                       no




                                 kidney transplant.
                                                                                          r




                                                                                                                                               transplants, and other groups have
                                                                                         an




                                                                                                   Claudia Castillo made the headlines
                                                                                           dG




                                                                                                   at the end of 2008 as the first person      reported transplanting new bladders
                                 Well done boys and
                                                                                             uy




                                                                                                   to receive a transplanted windpipe            grown from patient’s own stem cells.
                                 thank you very
                                 much …the money                                                   grown from her own stem
                                                                                                   cells. She needed the                                         NKF members will
                                 will be used wisely
                                                                                                   transplant after she                                            wish Claudia well,
                                 we promise!
                                                                                                                                      o




                                                                                                                                                                     and welcome this
                                                                                                                                   till




                                                                                                   contracted tuberculosis,
                                                                                                                               C as




                                                                                                   which badly damaged                                                real
                                 Good advice                                                                                                                           breakthrough
                                                                                                                            Claudia




                                                                                                   her windpipe at the
                                 Jason Plysi, who works for                                        point where it                                                      for organ
                                 the Publications Department at the                                entered her left lung
                                 Royal College of Physicians, wrote to us to alert us to a         (bronchus).                                                          transplantation
                                 recent addition to the RCP database, explaining that the                                                                              and stem-cell
                                 National Collaborating Centre for Chronic Conditions, based       The transplant took                                                therapy, but it
                                 at the Royal College of Physicians, has published a guideline     place in Barcelona and                                           will be some time
                                 designed to help save the lives of people with chronic kidney     was the result of a European                                   before this type of
                                 disease. The guideline sets out how best to identify who has      collaboration that included the                            surgery becomes
                                 CKD; who is at risk of progression and at risk of serious         University of Bristol.                               routine. And due to its
                                 complications, and how to manage their care.                                                                  complexity, an entire kidney may be
                                                                                                   The team of researchers and surgeons        one of the most difficult organs to
                                 We consider this downloadable guideline to be an excellent                                                    regenerate through stem-cell
                                                                                                   removed the cells from a human donor
                                 source of information and advice. It can be downloaded from:                                                  technology, though stem cells may be
                                                                                                   windpipe, and then used it as a
                                 www.nice.org.uk/Guidance/CG73                                                                                 able to repair damage in the early
                                                                                                   framework on which to grow a new
                                 This web-link provides professional guidelines as well as                                                     stages of some kidney diseases.
                                 information for patients, carers and the public. And, important   bronchus with Claudia’s own stem cells
                                 for KPAs, there are NICE documents on implementing the            and surface cells from a healthy part of
                                                                                                                                               To find out more about stem cells and
                                 guidance. You may also purchase a hardcopy version via this link. her windpipe.
                                                                                                                                               kidney repair, go to the NKF website:
                                 For more information and the opportunity to purchase a hard       Claudia was discharged from hospital        www.kidney.org.uk/Medical-Info
                                 copy version of the guidelines (for £30) go to:                   ten days after her transplant operation.    /transplant/stem-cells.html
                                 www.rcplondon.ac.uk/pubs/brochure.aspx?e=257

18
                   DONAL’S
The question for Dr O’Donoghue, UK
                                                                                                          TIME
                                                                                                          out in dialysis units during October last year...
Clinical Director of Kidney Care, this issue
was sent in by Bindu Chauhan of the                                                                       Dear Deborah
Leicestershire KPA.                                                                                       Subject: National Kidney Care Audit Patient
                                                                                                          Transport Survey
‘When patients dialyse at another unit it is
general practice now to provide the                                                                       On 15 and 16 October 2008, The NHS
temporary unit with blood results                                                                         Information Centre (The IC) conducted a survey
confirming that the patient is hepatitis                                                                  on patient transport for all haemodialysis
free. It also seems some kidney units have                                                                patients. This involved the completion of
a policy of isolating patients for three                                                                  questionnaires by patients, renal unit managers
weeks on their return from dialysing in                                                                   and renal service commissioners.
another unit in the UK to ensure cross
infection does not occur. How big a                                                                       We were fortunate to meet many patients at the
problem is this and will travelling become                                                                National Kidney Federation conference in
more difficult for haemodialysis patients,           they need dialysis as it does for people without     Coventry, where we took the opportunity to
especially abroad, if the number of                  kidney disease.                                      publicise the survey and witness the enthusiasm
hepatitis carriers increase?’                                                                             of patients for this piece of work.
                                                     Every patient with chronic kidney disease who
Dr O’Donoghue responds:                              might eventually dialyse should receive hepatitis    The figures from the return of the completed
Safety and infection control are essential quality   B immunisation.                                      patient questionnaires are now available.
factors in kidney units. In the early years of                                                            Patient interest in this survey has been
dialysis outbreaks of hepatitis B virus were a       The constraints on dialysing away from base          remarkable and two thirds of all haemodialysis
major risk. In Manchester and Edinburgh, the         units imposed on kidney patients within the          patients in England, Wales and Northern Ireland
consultants I trained under were acutely aware       United Kingdom is a continuing challenge. I          took part.
of these problems, having seen patients and          have therefore asked Bob Dunn (NKF National
colleagues die after contracting hepatitis B on      Patient Advocacy Officer) along with a working       The questionnaires to renal unit managers and
the dialysis unit. Hepatitis B can be highly         group, to collect the evidence and make              commissioners of renal services also had
infectious, even a small and invisible to the        recommendations for improvement on this              impressive response rates of 81 per cent and 89
naked eye blood spray - that occurs every time a     issue. I have worked with Bob from the start of      per cent respectively. These figures reinforce the
fistula is needled, or coming from the machine -     the NSF and he has taught me as much as any          commitment that everyone has to improving
can infect members of staff or a patient if they     of the consultants who trained me and they           services.
are too close. The frequency of hepatitis has        were the best in the world. Bob of course has
markedly improved over the past 20 years as a        taught me different things - so I was thrilled       We would like to thank all the patients who
result of general, universal precautions, machine    when I read of his MBE award for services to         took the time to complete the questionnaires.
design, hepatitis immunisation, blood                healthcare in the New Year’s Honours List. I         More than 3000 patients expressed an interest
transfusion screening and isolation. The last UK     look forward to the Dialysis Away From Base          in being more involved in the patient transport
survey showed a hepatitis B virus carriage rate      Unit report and expect real improvement from         audit and over 400 provided contact details. The
of 0.5 percent and a hepatitis C virus infection     the recommendations. People on dialysis should       IC will be contacting those patients who
rate of 2 percent. So the risks of hepatitis and     be encouraged and supported to have holidays.        provided contact information in the near future
other blood-borne viruses remain real and have       There are many reasons to travel around the          to develop a better understanding of the real
been contained rather than eliminated.               country - for family events, work, sport - so why    issues facing patients around their transport.
                                                     should people on dialysis be further restricted?
Over the last decade the major infection                                                                  We will also be providing feedback to
problem in kidney units has been bacterial           Quality is the organising principle of the NHS -     commissioners, renal units and their clinical
rather than viral infections. Bacterial infections   you can’t have quality without safety, so            directors on the numbers of patients interested
are spread in different ways and you are             infection control procedures and vigilance must      in maintaining involvement within their areas.
probably aware that dialysing through a              be the watchwords on kidney units. Units know
neckline rather than a graft or a fistula is the     the viral status – infected, carrier or clear from   Our next step is to support local organisations
main risk factor. That is why we placed such         viral infection – of every patient they provide      in using the analysis and developing action
emphasis on improved vascular access and             dialysis for even if it is only one session. This    plans to improve services. We will also
setting the target that every patient should have    approach and our zero-tolerance approach to          encourage patient involvement in this work, as
a fistula created six months before starting         MRSA, has made UK kidney units amongst the           it is vital that patient voices are included in this.
dialysis in the renal NSF. Of course, a small        safest in the world. So quarantine or isolation
proportion of people can’t have fistulas made        on return from dialysis in other UK units is not     The analysis from the survey will soon be
for technical reasons. So, like viral precautions,   normally needed. Several countries have similar      available on the National Kidney Care Audit
precautions against MRSA need to be strictly         high standards of care and use the same              website at www.ic.nhs.uk/kidneycareaudit
enforced. Such an approach has seen more             universal precautions we have developed. In
than 50 percent fall in the incidence of MRSA        some other countries, however, the safety record     Questions about the audit can be sent to the
bacteraemia in dialysis in England.                  is much worse and in some the risks of               project team at kidneycare@ic.nhs.uk
                                                     contracting hepatitis are, frankly, high if you
The best way to reduce the hepatitis B risk is to    have not been successfully vaccinated. You                                              Yours faithfully
vaccinate against the disease. But people with       should discuss this with your dialysis team and                                   Donal O’Donoghue
advanced kidney disease and those on dialysis        the NKF when considering travel. On return                   National Clinical Director for Kidney Care
often don’t sero-convert – by that I mean the        from abroad therefore, a period of quarantine of
vaccine doesn’t work. It is therefore important      up to 6 months is often needed if you have                                         Julie Henderson
that hepatitis B vaccine is given early, long        received dialysis in a country without the same             National Kidney Care Audit Senior Project
before dialysis is needed, so that it works and      high standards of infection control as the UK.                                              Manager
provides the same protection for people when         ...and an update on the Transport Survey carried


                                                                                                                                                                  19
                                                                   Haemodialysis in Wurzburg, whilst at
                                                                   the European Games By Dick Cooke
                                                                  During the games I discovered that they carried out          I found I had a shallow sleep because, as a novice I
                                                                  overnight haemodialysis and a clinic very kindly             was understandably aware of the lines, even in my
                                                                  agreed to let me try it. Not all clinics in Germany are      sleep. But eight hours passed a lot faster than four
                                                                  able to offer overnight treatment as it costs more to        hours do during the day and I am sure I would get
                                                                  provide than they receive in payment. However, where         used to sleeping on dialysis. Moreover I didn’t waste
     Dialysis in Europe is generally provided by                  the clinics are sufficiently profitable they like to offer   any of my precious time. We all shared a generous
     private clinics working to strict government                 this treatment, which they consider to be the best           breakfast in the dining room and when I had finished
     health authority specifications. The service is              available. I was keen to try overnight dialysis having       my taxi was waiting to take me to my hotel. I think this
     mainly state-funded but with an element of                   read about it in the nephrology press. Overnight             is very good treatment and would choose it if I could
                                                                  dialysis is also being used by some home                     avoid the long weekend without dialysis.
     private health insurance. Ireland and the United
                                                                  haemodialysis patients in England who are based at
     Kingdom are the only two states where dialysis
                                                                  Guys Hospital London. The principle behind the               Two years ago I met some young German men at the
     is provided entirely by the state. In Germany the            treatment is to use a long, slow, overnight dialysis         games who were having overnight haemodialysis
     state requires that no one should have to travel             which is better tolerated by the body because it more        treatment. They were all so well I thought they had
     more than 20 kilometres for haemodialysis and                closely mirrors healthy kidney function. Long slow           transplants. I think our government should carry out a
     they pay for travel to the clinic by taxi, or                dialysis is also more effective at removing waste such       study to examine the cost benefits of this treatment;
     provide a mileage allowance if the patient                   as phosphates, which are large molecules. They are           especially as some people must accept a life on
     drives themselves.                                           more easily removed during this process as the blood         haemodialysis rather than just survive a short time as
                                                                  pump and dialysate flow run at lower speeds.                 they wait for a transplant. Perhaps we should be
     In and around Wurzburg there are three clinics run by                                                                     providing treatments that allow people as good a
     two different companies. Each is an independent              Instead of chairs, the clinic has several comfortable        quality of life as possible so that we can all make a
     profit-making centre. I used two of them and was             electronically adjustable beds. For the overnight            useful contribution to society.
     impressed. They are efficiently run, well staffed,           dialysis I shared a side ward with a young lady who
     scrupulously clean and have modern equipment. The            spoke good English and we spent an hour or two
     treatment was provided by expert nurses, a doctor was        comparing medical experiences
     available in the clinic throughout and ancillary staff       before settling to sleep. Diana is a
     provided domestic support.                                   postgraduate student with a part-
                                                                  time job and has been on dialysis
     The atmosphere was impressively professional and             since her teens, except for a short
     tempered with an attention to service that made us           period with an unsuccessful
     feel as valued as if we were in a good restaurant or         transplant. Diana has been on
     hotel. For the duration of the games the clinic staff        overnight dialysis for four years and
     had volunteered for a lot of extra work, signing up for      comes to the clinic to sleep three
     additional shifts and avoiding annual leave. The             nights a week and prefers this
     dialysis patients are very fortunate because it seems        treatment to any other. Diana’s only
     our branch of medicine attracts doctors and nurses           improvement would be to dialyse
     with such commitment and dedication.                         every other day rather than have the
                                                                  three day gap at weekends.

     NOTICE is hereby given that                    of the current Trustees. Any individual        shall have more than one person who is a
     the 30th Annual General                        who is a member of a member KPA may            member of that KPA serving as an officer
                                                    stand for election to the Executive            of the Executive Committee. Ballot papers
     Meeting of the National                        Committee, subject to a maximum of two         shall be given to Full Members at the
     Kidney Fed-eration will be                     individuals from any individual KPA. All       annual general meeting and the counting
     held on Saturday 28 March                      nominations must be proposed, seconded         of the ballots will take place at such
     2009, at 1.30pm at the                         and submitted in writing to the                meeting. The election of Trustees shall be
                                                    Federation to arrive no later than 42 days     carried by a simple majority of the votes
     Governors’ Hall, St Thomas'
     Hospital, London.
                                                    before the date of the annual general
                                                    meeting.
                                                                                                   cast and in case of equality of votes the
                                                                                                   Chairperson shall decide between those
                                                                                                                                                 Advertisement
                                                       Either the proposer or seconder MUST        candidates by lot, and proceed as if the
     1 Full Member Associations may send            be a member of the nominee’s own KPA.          candidate on whom the lot falls had
       representatives.                             No individual may propose or second more       received an additional vote.           The
     2 Associate Members, Affiliated Members        than two nominees for election to the          Chairperson shall announce the results at
       and Friends Members may attend and           Executive Committee in any one year.           the annual general meeting. Where there
       may speak on non-policy matters, but            Full     and      Associate     Member      are no more nominations than vacant posts
       are not entitled to vote.                    Associations may propose candidates for        the candidates shall be declared elected at
     3 If the official representative of any Full   election and may submit propositions and       the annual general meeting without the
       Member Association is unable to              items for the Agenda.                          necessity of a vote.
       attend, then a substitute representative        The Executive shall consist of not less        All nominations must be accompanied
       may attend and vote on behalf of that        than 11 and no more than 16 members            by a brief statement supporting their
       Association: Written notification of the     elected by representatives of Full Members     candidature together with a signed Charity
       substitution to be given in writing          of the Federation, including a maximum of      Trustees Eligibility form.
       prior to the meeting.                        6 officers. All Trustees shall retire             The quorum at an AGM shall be 30%
                                                    annually, but are eligible for re-election     of      Full      Member     Associations’
        The Council shall consist of one            provided that no Trustee may serve for a       representatives.
     representative from each Full Member           period of more than seven consecutive             ALL NOMINATIONS MUST BE
     Association. At the AGM the Council will       years except in respect of existing officers   SUBMITTED IN WRITING to the
     elect the Executive Committee. Up to           who wish to continue beyond the seven          Federation at the address shown on page 3
     three Executive Committee members may          years limit in order to complete a three
                                                                                                   of Kidney Life TO ARRIVE NO LATER
     be individuals who are members of the          year term of office to an elected position
     Federation, but not members of any             already held. No individual shall be           THAN 13 FEBRUARY 2009.
     member Kidney Patients’ Association.           eligible to stand for election as                 The agenda will be circulated to each
     Any such individual must have their            Chairperson until he or she has served for     member association rep-resentative no
     nomination proposed or seconded by one         at least 12 months as a Trustee. No KPA        later than 27 February 2009.


20
                             Holiday in the stunning Lake District and let Lakeland Dialysis
                             cater for all your Haemodialysis needs, in a relaxed and
                             professional atmosphere.
                             Our clinic is situated in the Western Lake District in the picturesque market town
                             of Cockermouth. Surrounded by magnificent scenery extending from the Lakeland
                             fells to the beautiful coastline including
                             Wast Water “Britain’s Favourite View”
                             Advertisement
                             THE CLINIC IS OPEN ALL YEAR ROUND
                             Always staffed by a fully qualified nephrology nurse and assistant, the clinic meets
                             all regulations and standards set out by the Healthcare Commission.

                             NOW TAKING BOOKINGS FOR 2009
                             For a leaflet, booking enquiry, or further information please contact
Lakeland Dialysis Limited,
                             Kevin on 01900 822 888 or e-mail info@lakelanddialysis.co.uk
Unit 7E,
Lakeland Business Park,         “Relax and enjoy your holiday with peace of mind”
Lamplugh Road,
Cockermouth,
Cumbria, CA13 0QT
                                                  www.lakelanddialysis.co.uk
                                                       Healthcare Commission No. P020002005




                                                                                                                   21
                                 A really big thank you...                                                                             Thanks
     ...if you took the time to fill in one of the dental questionnaires in the Winter 2008                                          for 'filling'
     issue of Kidney Life and send them into NKF HQ - at your own expense! We
     received a staggering 275 individual responses and some of you even took the time                                                  us in!
     to write and let us know of some of the specific dental problems you have
     encountered. This information has provided a unique insight into the standard of our oral
     health and our access to adequate oral health care. All these surveys are now with Professor
                                                     Porter at the University College London School of Dentistry
                                                     for data analysis and we will be reporting further on this survey in the next issue of
                                                     Kidney Life.

                                                                 At the Annual Patients’ Conference delegates are asked to complete a questionnaire and
                                                                 in order that we know how many patients join us and how many ‘others’ are in the
                                                                 audience, we ask that you indicate which of these descriptions most closely matches you.
                                                                 We have received a wonderful and thought provoking poem penned by Margaret Tupling.

                                                                 Why I am
                                                                 ticking ‘other’                                                    I didn’t call myself a carer
                                                                                                                                    When started CAPD
                                                                 I didn’t call myself a carer                                       Of course it affected my routine
                                                                 When they said he’d PKD,                                           ‘cos I’m his wife you see.
      Hotel Arcus Residence                                      I’d been his wife for twenty-five years
                                                                 And that’s what I’ll always be.                                    As advised by docs and nurses
                                                                                                                                    He cared for his own health
                                                                 His end stage renal failure                                        Performing bag exchanges
                                                                 Was never in our plan,                                             He dialysed himself.
                                                                 But I know I’d always be his wife
                                                                 And he’d always be my man.                                         I performed my wifely duties –
                                                                                                                                    Watched his diet, cut out salt,
                                                                                                                                    Soaked potatoes over night

          Advertisement
                                                                  K.C                       Holiday
                                                                                            Dialysis     1995

                                                                                            Centre (Bournemouth)
                                                                                                                 Established        Being ill was not his fault.

                                                                                                                                    But he measured ‘in’ and ‘out’-puts
                                                                                                                                    Worked, and drove the car,
                                                                   FRIENDLY FAMILY RUN UNIT                                         Attended his own daily needs
                                                                   SITUATED ABOUT  100 YARDS                                        His carer? Not me, by far.
                                                                   FROM THE BEAUTIFUL SANDY
                                                                   BEACHES OF SOUTHBOURNE.
                                                                                                                                    I rejoiced upon his transplant
                                                                   BOURNEMOUTH TOWN AND
                                                                                                                                    He was well for all to see,
                                                                   ITS FAMOUS PIER ARE APPROXIMATELY TWO MILES AWAY.
                                                                                                                                    Popping the pills, a small price
                                                                  • Parking available and has wheelchair access                     My husband restored to me.
                                                                  • Dialysis facilities offered all year round
                                                                  • Normal opening hours 8am to 8pm                                 I’ve backed his work to fellow patients
                                                                  • Arrangements made with local hotels situated within             At home and overseas,
                                                                    a few minutes walk of the unit, to offer a discount on
                                                                    accommodation                                                   I’ll keep on caring about him
                                                                  • First-line medical support available                            And I know he cares for me.
                                                                  • The unit is staffed by well-trained nurses and the
                                                                    Director, having over 20 years experience in this area
                                                                    of care, ensures a warm and friendly atmosphere is
                                                                                                                                    ps. Our sons have got the rogue genes,
                                                                    maintained at all times.                                        But I’m still ticking ‘other’,
                                                                                                                                    I care about them very much
                                                                   35 Southwood Avenue, Southbourne,                                But chiefly, I’m their mother!
                                                                     Bournemouth, Dorset BH6 3QB
                                                                         Tel/Fax: 01202 422311                                                   Note from the Editor…lucky Ken.


                                                                                                                        Open
     CHARING CROSS HOLIDAY DIALYSIS TRUST                                                                          all year round
                                                                                                                 - why not take a
                          ST. ANNE’S                                                                              Winter or early
                                                                                                                  Spring break -
     St Anne’s provides self catering holiday accommodation for renal                                             or even a long
     patients. Dialysis is undertaken in a purpose-built dialysis unit situated                                       weekend
     in the garden of St Anne’s and supervised by a trained renal nurse.

     St Anne’s, with its beautiful garden, is just a short
     walk from the centre of Emsworth, a picturesque
     village in the upper reaches of Chichester Harbour,                                                                              For further information contact:
     full of charm and character with its numerous tea                                                                         St Anne’s, 34 Havant Road, Emsworth, Hants PO10 7JG
     shops and pubs. Non-residents are welcome to use                                                                            Telephone: Monday-Friday 8am-3pm: 01243 376514
     the dialysis and garden facilities.                                                                                           Telephone, fax and answer phone: 01243 372807
                                                                                                                                           e-mail: e.faber123@tiscali.co.uk
     Charity Registration No. 265378 • Healthcare Commission No. 11492                                                                 www.communigate.co.uk/london/cxhdt



22
 Letters Page
Dear Editor                                            Dear Editor                                          I have found the hotels to be very obliging and
I am writing to ask a question about the               In your Winter 2008 issue Carole Dudley              extremely helpful. You just need to let the
timing of blood tests done prior to outpatient         mentioned that she has not had a holiday in          manager know the situation, and any special
clinic appointments. It appears that the               the five years she has been on APD. I was            arrangements you may require, in advance.
normal practice is often for blood to be taken         on CAPD for a year and then APD for five
for testing at clinic appointments. This blood         years, before I was lucky enough to have a           It does help if you buy a small folding table to
is then analyzed and the results passed onto           transplant in 2006.                                  carry with you to place your machine on. I
the doctors in due course.                                                                                  found one in Home Bargains for about £5, and
                                                       During this time I had a holiday every year.         you will also need an electric cable. If we are
These results form the basis of the next               The first year I went to Spain when I was on         just away for the weekend we take everything
clinic’s consultation at a date that can be as         CAPD then whilst on APD flew to Jersey twice         I need (fluids, lines etc) with us in the car.
much as two or more months later. Thus,                and one year, when my nephew was getting
ongoing treatment decisions are being based            married in Florida, I went too! My hospital          We are hoping to holiday abroad in the future.
on old results unless, of course, something            arranged with Baxters to send all the dialysis       I hope this information is of some help. I say
shows up demanding more immediate action               fluid to my destination and my machine came          to anyone ‘do give it a try and with a little
by the doctor. If calling into the clinic a week       with me on the plane. I had to take all my           planning you will be surprised how easy it
before an appointment is not convenient or             ancillaries but otherwise there was never any        is….and good luck to Mrs Dudley!’ It would
possible then might blood samples be taken             problem about the delivery of fluid to the           be nice to hear how she gets on.
by a local GP or Practice Nurse and then sent          various hotels. I also had many holidays in
in for analysis?                                       B&B and self-catering cottages in England.                       Kindest regards, Rachel E Byrom

So I would like to ask readers of KL ‘if you are       We all know how important a holiday is and I         Dear Editor
not already having blood tests done shortly            hope Carole is able to book some holidays in         I read with interest Mrs Dudley’s letter re
before your clinic appointment, do you want to         the future.                                          having a holiday whilst on dialysis. My
move to a system in which blood is taken and                                                                husband has been on dialysis for three years
tested immediately prior, or at least very close                    Yours sincerely, Janet L Painter        and we we’re getting desperate to have a
to a clinic appointment. And, if so, would you                                                              break, but all avenues proved no good.
be prepared to have your blood taken at your           Dear Editor
local GPs surgery if your clinic hospital is too       In the last issue of Kidney Life you printed a       Either what was on offer was too far away or
far away?’                                             letter from Mrs Carole Dudley regarding              too expensive. Then the nurse came up with
                                                       going on holiday while dialysing on APD. I           two weeks in Southbourne in September –
                    Simon Lloyd, Tyneside KPA          have been on APD for over three years now            we were so thrilled!
                                                       and during that time have had several
Note from the Editor:                                  holidays in this country without any                 I booked into the KC Holiday Dialysis Centre
If YOU have a comment to make in response              problems.                                            on the National Health, and I booked into the
to Simon’s question or would simply like to                                                                 Newpoint Hotel. Both were absolutely first
report how and when YOUR clinic gathers                My dialysis unit at the Royal Liverpool              class. We had perfect weather, little walks on
bloods prior to clinic appointments, please let        University Hospital arranges for my dialysis         the sea front, evening meals out and good
us know. If we then get reports of markedly            fluids to be delivered to the hotel where I plan     company. I have found out that you are
varied methods and timing of blood tests prior         to stay. They also deliver drain lines and all       entitled to two weeks on the National Health
to clinic appointments across the country, we          the other bits and pieces that I need, and my        every year!
will do our best to collate them and report as         husband takes my APD machine with us in the
true a situation as possible in the next issue of      car. We have experienced no problems with            Best of luck and enjoy the rest – we did.
Kidney Life.                                           these arrangements. I need to make
                                                       arrangements in advance with both the hotel                            Yours sincerely, E Osborne
In Milton Keynes (a satellite clinic to Oxford         (they need to accept fluid delivery) and my
Churchill) it is normal practice for us to call in a   dialysis unit at the hospital (to deliver my         Mrs Painter, Mrs Byrom and Mrs Osborne –
week in advance of a clinic appointment to             fluids).                                             thank you very much for taking the time and
have blood taken so that all discussion at the                                                              making the effort to help Mrs Dudley!
following week’s clinic appointment is based           When I make the arrangements for my fluids
on bang up to date blood test results. But this        delivery to the hotel I am then supplied with
is clearly not the case nationally. What               the name of the nearest hospital dealing with
happens at YOUR clinic? Simon, thank you               APD – but I have never needed to make
very much for raising this issue.                      contact with another hospital yet!



           Dialysis in Spain
   Clíníca La Nucía is a holiday dialysis centre near                                              Information and bookings ask for:
   Benidorm, surrounded by magnificent mountains.
                                                                                                                     Simone Leijten
  Benidorm is a privileged place, with an exceptional
    climate all the year round, which enjoys all the                                                               Holiday coordinator
           advantages of its location, on the                                                             E-mail: simoneleijten@hotmail.com
            Mediterranean coast of Spain.                                                                   Tel: 0034 965 887 303 (private)
                                                              Advertisement                                  Tel: 0034 966 873 049 (clinic)
  The staff of Clíníca La Nucía is highly experienced                                                            Fax: 0034 966 874 802
                  and speaks English.
                                                                                                                  www.dialysespanje.nl
           The clinic is open all the year round.


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