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					                                                                                                                              Spring issue 2010




  The magazine of the National Kidney Federation




             POOLED DONATION
                    paving the way to more successful
                            kidney transplants
                                                            pages 8-9




INSIDE THIS ISSUE…                                                                                      RENAL
Three Parliamentary survey forms                                                                   QUESTION TIME…
                                                                                      Donal O,Donoghue reponds again to
requiring action by YOU !!                                                                          a topical renal issue
page 5                                                                                                          page 10

      W H A T ’ S     I N     T H I S      I S S U E :

      Page    Article                                                               Page   Article
      3       NKF New                                                               10     Donal’s Question Time
      4       Assessing the impact of insufficient home dialysis                    13     Getting the end of life right
      5       Contacting your Parliamentary Candidates to ensure our future         15     Noticeboard
      6       Preparing young people for transition from paediatric to adult care   16     Medical Matters
      7       Peritoneal Dialysis at home                                           18     Notice of Annual General Meeting
      8-9     Pooled Donation - how can this help me?                               19     Letters
    Advertisement




2
8
                                                                 A sad farewell to                                                                                                                                      NKFNEWS
WHO’S WHO  AT THE NATIONAL
                                                                         Bob Smith
          KIDNEY FEDERATION                                                         I was very sorry indeed to learn of the death
Officers
                                                                                    of Bob Smith following a short illness. Bob
                                                                                    was a long serving and faithful colleague
                                                                                                                                                                                                        NKF Policy
President:                 Frank Howarth
Chairman:
Vice Chairman:
                           Ray Mackey
                           Marion Higgins
                                                                                    who will be sadly missed. He joined the
                                                                                    NKF Executive Committee in 2002 and was
                                                                                                                                                                                                        on Health Tourism
                                                                                                                                                                                                        We’d like to offer humble apologies to
Secretary:                 TBA                                                      Co-Vice Chairman 2005/6. In 2007 he took
                                                                                                                                                                                                        our friends in Ireland for omitting
Treasurer:                 David MacDonald                       on the task of secretary to the Federation and was proposing
Executive committee                                                                                                                                                                                     reference to them in the NKF Policy on
                                                                 to continue as our company secretary, sadly this was not
Michael Abbott             Kirit Modi                            possible.                                                                                                                              Health Tourism printed in the Winter 2009
William Bradbury           Sandy Lines MBE                                                                                                                                                              issue of Kidney Life (on page 3).
                                                                   We shall miss Bob's wry sense of humour and we extend
Bindu Chauhan              Peter MacDonald
Richard Cooke              Bob Price                             our sympathies to Rosemary, Bobs sister, at this time of
Barbara Morris             Linda Pickering                       bereavement.                                                                                                                           Thank you, Mark Murphy (CEO, Irish
Tracey Sinclair                                                                               Frank Howarth, President, National Kidney Federation.                                                     Kidney Association) for pointing this
Patrons                                                                                                                                                                                                 out… we’re genuinely very sorry!!
Baroness Cumberlege CBE DL
Prof Sir Netar Mallick DL FRCP
Baroness Masham of Ilton DL
The Rt Hon The Lord Norrie                                        Full name......................................................
                                                                                                                                           Please tick one of the below
                                                                                                                                                             I am:
                                                                                                                                                                                            Become a Friend of the NKF
Medical advisors
                                                                  Address......................................................... a patient                carer            friend         Whether you are a Kidney Patient yourself, a carer or
Mr Ali Bakran MBChB FRCS                                                                                                                                                                    just a friend who would like to support the National
Dr Alison Crombie BSc MSc PhD                                      .....................................................................   If you are a patient, please tell us             Kidney Federation in its work, please consider making
Prof Terry Feest MRCP                                                                                                                        the name of your renal unit or
                                                                  ..................................Postcode .....................                    nearest KPA.
                                                                                                                                                                                            an annual donation to the NKF. Just send us your name
Prof Alison MacLeod MRCP                                                                                                                                                                    and address (or fill in this form) and post it to us
Prof Sir Netar Mallick FL FRCP                                    Tel.................................................................     ...........................................      together with your donation to:
Dr Richard Moore BSc MD FRCP MBA                                  Amount donated                                              Declaration                                                   National Kidney Federation, The Point, Coach
                                                                                                                              I am a UK taxpayer and want the
Dr Rakesh Patel MBChB                                             £..............................................                                                                           Road, Shireoaks, Worksop, Notts S81 8BW
                                                                                                                              National Kidney Federation to reclaim the
Mr Hany Riad FRCS                                                                                                             tax on all donations I make on or after                       Telephone 01909 544999
                                                                  Date.........................................               the date of this declaration. My tax bill
Dr Andrew Stein MRCP                                                                                                          this year will be more than this donation
                                                                  The section below is optional - please
Dr David Taube FRCP                                               ignore if you do not want the NKF to re-                                                                                  Donations of £20 or above will entitle you to
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                                                                                                                                                                                            receive 4 issues of Kidney Life Magazine.
Specialist advisors                                               If you are a UK taxpayer, and complete      Date..........................................
                                                                  the following Gift Aid Declaration, as well
Mrs J Auer CQSW                                                                                                                                                                             All donations will be acknowledged. Join online and
                                                                  as the form above, the NKF will be able     Signature.................................................
Dr Joanna Chambers MB FRCP FRCR                                   to reclaim the tax on all donations you
                                                                  make to the NKF
                                                                                                              Note: Remember to notify us if you no longer pay an
                                                                                                              amount of income tax or capital gains tax equal to the tax                    Cheques should be made payable to pay by Credit or
Ms Cathy Holman CQSW                                                                                                          we reclaim on your donations (28p for every £1 you give\)
                                                                                                                                                           \
                                                                                                                                                                                                                                Debit card’
                                                                                                                                                                                            National Kidney Federation
Prof Phillip Dyer OBE Phd FRCPath SRCS
Contacts
Chief Executive                   Timothy Statham OBE
                                                                 Tell the NKF
Office Manager
Assistant Office Manager
                                  Margaret Parkin
                                  Neil Pankhurst
                                                                                                                    SURVEY ZONE - Use it, don’t lose it!
                                                                 The NKF Survey Zone is YOUR opportunity to let us know how we can best represent YOU. Make a note to check the link
Office Administrator              Stephanie Allen
                                                                 www.kidney.org.uk/surveys (or click the ‘Tell the NKF’ button at the top of the home page) every week to ensure you have
Accounts Administrator            Sue Edwards
Assistant Office Administrator Linda Fores
                                                                 contributed to every survey listed. New surveys are listed regularly so checking the site regularly is the only way to make
Helpline Manager                  Jane Oldfield
                                                                 sure you have contributed to them all. One voice is important and might be heard - but 1000s cannot be ignored! This is
Assistant Helpline Manager        Pauline Pinkos
                                                                 how we maintain pressure on those who can make a difference to our treatment. The NKF will use the information YOU have
Advocacy Officers                                                provided in the Survey Zone to help formulate policy and assist the pharmaceutical industry and Government plan the
National & South:          Bob Dunn MBE                          future care of all kidney patients in the UK. So, to make your opinion count, make sure we have it!!!
North Region:              Dennis Crane MBE
Midlands Region:
Trust/Grants
                           Denis Cawdron
                           George Finch
                                                                   How to contribute to Kidney Life                                                                                       The NKF Helpline
                                                                  If you have an interesting story to contribute to Kidney                                                                The NKF Helpline provides information to patients,
Kidney Life Magazine
                                                                  Life there are many ways you can do this. You can
Editor:                    Deborah Duval                                                                                                                                                  carers, family, friends and medical professionals. Seek
                                                                  either contact us by emailing the NKF on
Assistant Editor:          Sue Lyon
                                                                  nkf@kidney.org.uk making sure your email subject                                                                        advice, obtain literature, get help - all from the one
Designers:                 Walker Associates
                                                                  line indicates it is for Kidney Life, or you can write a
Printers:                  Multicopy Ltd                                                                                                                                                  Helpline number (open for calls from 9.00 am to 5.00
                                                                  letter and send it in to the NKF HQ. If you have any
Web team
Webmaster:                 Ken Petrie (Instabook)
                                                                  ideas for Kidney Life and would like to speak to the                                                                    pm, Monday to Friday): 0845        601 02 09
Medical Advisors:          Dr Rob Higgins FRCP
                                                                  editor about them, please let us have your contact
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                           Dr Charles Tomson BM B.CH D.M.
                           Dr Andrew Lewington                    you are sending in photographs, please make sure they                                                                   e-mail: helpline@kidney.org.uk
                                                                  are sent as an attachment to email in jpeg format
National Kidney Federation                                        (hard copy photos can also be used and of course will                                                                                  Kidney Life is sponsored by:
Registered Office: The Point, Coach Road,                         be returned once used).                                                                                                  Amgen                 Gambro           Quanta Fluid Solutions
Shireoaks, Worksop, Nottinghamshire S81 8BW.                          Deadline for Summer 2010 issue is 9 April 2010.                                                                      Astellas              Diaverum         Roche
Tel: 01909 544999                                                             We’d love to hear from you!                                                                                  Baxter Healthcare     Genzyme          Shire
Fax: 01909 481723                                                                                                                                                                          Braun Avitum UK       Hospira          Syner-Med
E-mail: nkf@kidney.org.uk                                                                                                                                                                  Diaverum              Kimal            Wyeth
Website: www.kidney.org.uk
National Kidney Patients Helpline: 0845 601 02 09 (local rate)
                                                                 Sponsorship the easy way                                                                                                  Fresenius             Novartis

Charity No. 1106735
                                                                 Raising money by sponsorship of the NKF is easy:-
Company No. 5272349 Registered in England & Wales
                                                                 Visit www.justgiving.com/KidneyLife or                                                                                       Anyone with access to the Internet can find the latest
Give as You Earn contributions No. CAF. GY511                    www.justgiving.com/kidney-life and see how easy it                                                                            information from the NKF at www.kidney.org.uk
                                                                 is to organise an event without even needing to collect
                                                                 the money. If you need NKF merchandise to help you
Kidney Life is published by The National Kidney Federation,      visit www.kidney.org.uk/main/NKF_materials
                  The Point, Coach Road,
     Shireoaks, Worksop, Nottinghamshire S81 8BW.
The views and opinions expressed by contributors are not
                                                                            A black and white larger print or audio version of this issue is
  necessarily the view of The National Kidney Federation.                               available by ringing 0845 601 02 09

                                                                                                                                                                                                                                                           3
    In response to the recently published Half Term Report on the NSF (Renal),
    the following official comment has been published in The Health Service Journal.

                                                                                   “The NSF set out a vision for the NHS. The commitment to delivering
                                                                                   this vision is having clear benefits for patients, including improved
                                                                                   diagnosis and management in primary care and a decrease in the

                  KIDNEY CARE
                                                                                   number of late referrals for dialysis and transplants.

                                                                                   “There is still a lot more work to be done and I hope to see progress in

                 IMPROVEMENT                                                       all areas of kidney care continue over the next five years,” he added.
                                                                                   National Kidney Federation chief executive Tim Statham told HSJ that


          HAMPERED BY
                                                                                   although progress had been made, challenges remained, particularly
                                                                                   around the provision of home dialysis. He said: “There are not enough
                                                                                   dialysis stations, staff and units to dialyse our patients in a timely
                                                                                   fashion. They are having only three sessions a week, which we believe is

         INSUFFICIENT HOME                                                         insufficient to retain good health.”


              DIALYSIS,                                                            The report does not put “sufficient emphasis” on home dialysis, which
                                                                                   accounts for roughly 2 per cent of the dialysis population, in comparison

         WARN CHARITIES
                                                                                   with 15 per cent recommended by NICE, and 30 per cent supported by
                                                                                   the NKF, he said.

                                                                                   “The importance of home dialysis is that it doesn’t just relieve capacity
                                                                                   problems, it means patients have more regular dialysis, they are fitter
                                                                  By Moya Sarner   and healthier and they live longer - and that means big financial savings
                                                                                   for the NHS,” he said.
    The NHS continues to provide insufficient home dialysis facilities, despite
    overall improvements in kidney care, charities have warned.                    Kidney Research UK chief executive Charles Kernahan agreed there
                                                                                   needed to be more choice of where patients can receive their treatment.
    The Department of Health published a report today on the progress              He said: “The key is having home dialysis available for people to choose,
    made in kidney care five years after the development of the national           because it doesn’t suit everybody, and needs will change as kidney
    service framework. Improvements cited by the DH include increased              disease develops in patients.The important thing is that the DH and the
    capacity for dialysis and more satellite renal units.                          NHS have recognised the need, though there is still some way to go to
                                                                                   implement it throughout the country.”
    There are not enough dialysis stations, staff and units to dialyse our
    patients in a timely fashion National Clinical Director for Kidney Care        To access a copy of the Half Term Report please go to
    Donal O’Donoghue said........                                                  www.kidney.org.uk/campaigns/Renal-nsf/dh_109977.pdf




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4
8
KIDNEY CARE
                                                                                    Does the quality of care for
                                                                                    kidney patients matter to you?

IT’S IN YOUR HANDS
                                                                                    If the answer to this question is YES, then we need to take action en masse
                                                                                    to ensure that this is also a priority for the next Government. We cannot
                                                                                    take a commitment to this care for granted. The future care of kidney
                                                                                    patients is in YOUR hands so PLEASE take action.
                                                                                                                                   CHAIRMAN, RAY MACKEY EXPLAINS......




                                                                                                   ATTENTION
                                                                                                   EVERYBODY
                                                                                                                        the              NKF needs your help NOW.
                                                                                    A General Election is imminent, and
                                                                                                                                                                      who
                                                                                                                              175 members of Parliament and Lords
                                                                                    During the last parliament there were
                                                                                                                                in Parliament. They did this in a number of
                                                                                    supported the needs of kidney patients
                                                                                                                                     ntary Kidney Group, which was, and is,
                                                                                    ways , including joining the All Party Parliame
                                                                                    a very powerful voice, and very helpful.
                                                                                                                                                                    of
                                                                                                                              patients that we enjoy the same level
                                                                                    It is essential for the welfare of kidney                       the parliamentary
                                                                                                                               means approaching
                                                                                    support in the new Parliament - that
                                                                                    candidates now, befo   re polling day.


  HOW DO I FIND                                                                      The NKF asks you to do four things:-                                          each
                                                                                                                          in the top right hand corner of
                                                                                     1. Write your name and address
   OUT WHO MY                                     THE CONSERVATIVE PARTY                 survey form (enclosed in this Kidney
                                                                                                                                Life magazine)

 PARLIAMENTARY                                                                                                               party candidates are in your own
                                                Either access the Conservative       2. Find out who the three main
                                                                                         constituency
 CANDIDATES ARE                                 Party website using the following
                                                                                                                                complete one of the survey forms,
                                                link and enter your post code in
                                                                                      3. Ask those three candidates to each
  FOR THE MAIN                                  the space provided at the bottom
                                                left of the page:
                                                                                          and return it to you
 THREE POLITICAL                                www.conservatives.com/                4. Send the NKF the completed surv
                                                                                                                             ey forms.
                                                where_you_live
     PARTIES?                                   or call their Campaign Office on:
                                                                                      This is important work that may well
                                                                                                                              have a bearing on the level of rena
                                                                                                                                                                        l
                                                020 7222 9000.                                                             years and the quality of life that our patient
                                                                                      replacement therapy over the coming
                                                  THE LABOUR PARTY                     members are able to enjoy.
 LIBERAL DEMOCRATS
                                                                                                                             er      and forget them.
                                                Either access the Labour Party        Please help - don’t put these in a draw
Either access the Liberal Democrats’            website using the following link
                                                                                                                                   help with this task.
website using the following link and            and enter your postcode in the         The NKF urgently needs your support and
enter your postcode:                            space provided down the right
www.libdems.org.uk/parliamentary_               hand panel on the home page:                                              nal Chairman
                                                                                       Kind regards, Ray Mackey, NKF Natio
candidates.aspx                                 www.labour.org.uk
or call their Campaign Office on:               or call their Campaign Office on:
020 7222 7999.                                  08705 900 200.

                                                                                                        Open
CHARING CROSS HOLIDAY DIALYSIS TRUST                                                              all year round -
                                                                                                   why not take a
                       ST. ANNE’S                                                               Winter or early Spring
                                                                                                  break - or even a
St Anne’s provides self catering holiday accommodation for renal                                   long weekend
patients. Dialysis is undertaken in a purpose built dialysis unit situated                              break
in the garden of St Anne’s and supervised by a renal trained 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                                                                Telephone: Monday-Friday 10am-3pm: 01243 372807
use the dialysis and garden facilities.                                                                          leave a message and we will return your call
                                                                                                                       e-mail: e.faber123@tiscali.co.uk
Charity Registration No. 265378 • Care Quality Commission No. 11492                                                www.communigate.co.uk/london/cxhdt




                                                                                                                                                                              5
    Preparing You ng People...
     ...FOR TRANSITION FROM PAEDIATRIC TO ADULT
     KIDNEY UNIT USING RESIDENTIAL EXPERIENCE
                          by Alan R Watson, Consultant Paediatric Nephrologist,    utilising peer support and sharing experiences. A total of 32
                                         Donna Hilton, Senior Youth Worker and     young people (20 with transplants, 7 on dialysis, 5 with CKD)
                                    Dorro Hackett, Youth Development Worker.       attended three residentials accompanied by an average of four
      Children’s Renal & Urology Unit, Nottingham University Hospitals NHS Trust   staff including youth worker, dietician, specialist paediatric nurses
                                                                                   and volunteers. The adult unit has also been represented by
      It has long been part of our strategy of support for                         specialist nurse and/or social worker.
      families of children with chronic kidney disease (CKD)
      to offer residential holidays away from their families                       The content of the group sessions each day was developed
      and run by unit staff. In the development of our                             following feedback from the young people and included subjects
      support for young people in transition from paediatric                       such as transition issues, developing peer support, team work,
      to adult kidney units, we developed transition                               health and awareness, sexual health and alcohol, diet and cooking
      residentials for young people 16 – 18 years of age.                          practice, and developing life skills. The young people also planned
                                                                                   and participated in the production of a DVD on transition issues
      The residentials have been held in either Youth
                                                                                   ‘Moving On’ - available from NUH Youth Service, e-mail
      Hostels or at a local family holiday village over a                          nuhyouthservice@nuh.nhs.uk
      period of 2-4 days.
                                                                                   The residentials have had a very strong evaluation, with the vast
                                                                                   majority of young people feeling more confident about transferring
                                                                                   to the adult unit. We quickly adopted their suggestion that young
                                                                                   adult patients who had already made the transition should be
                                                                                   invited to give their experiences.

                                                                                   If managing any chronic illness requires improving self-
                                                                                   management skills and developing social support, then bringing
                                                                                   young people in transition together for a few days is certainly
                                                                                   helpful. The fact that many young adults with CKD have
                                                                                   volunteered to come back as peer mentors or counsellors for other
                                                                                   young people undergoing transition is a very positive outcome
                                                                                   from such events.

                                                                                   At present residentials are funded by charitable donations and
                                                                                   perhaps they should be part of the funded care for every young
                                                                                   person in transition.

                                                                                   If you would like further information on this initiative please
                                                                                   contact judith.hayes@nuh.nhs.uk




                                                Young people at a transition
                                                residential in Derbyshire


      Key to this success of the project has been the involvement of our
      youth work team and volunteers. Youth workers work with young
      people aged 11-25 years of age on a one-to-one basis and cover a
      large range of issues as well as promoting youth achievement
      awards, group work and activities and a hospital youth club.

      We know that transition from paediatric to adult care can cause
      problems with young people, families and staff and efforts are
      being made to address the problems with the development of joint
      initiatives between paediatric and adult units.
      We felt that many young people benefit from meeting together,

                                                                                     Learning about alcohol!

6
.   Home Dialysis Options
    Our article in the last issue of Kidney Life outlining the progress being made in the provision of portable haemodialysis machines
    generated a great deal of interest with many patients clearly desiring the freedom to choose when and for how long they dialyse
    and to move their dialysis out of the unit and into their home. For this issue Kidney Life has invited Baxter Healthcare to submit
    an article explaining some of the benefits of peritoneal dialysis. This article does refer throughout to ‘home dialysis’. Please
    remember both haemo’ and peritoneal dialysis may be performed at home. As with the Winter 2009 two submissions to Kidney Life
    on home dialysis, this article has been reproduced verbatim and so does not necessarily reflect the views of the NKF.



                                                              Yvonne’s story
    THINK HOME                                                My dialysis machine is portable and
                                                              go anywhere with me; it
                                                                                                     can
                                                                                       has just become
                                                                                                                       Pamela’s story
                                                                                                                         My husband and I have just bought

    DIALYSIS -                                                part of my luggage and means I can
                                                              enjo y doing what I love to do. My
                                                                                                     still

                                                                                                        a
                                                                                                                         our very own Arun lifeboat and we
                                                                                                                        enjoy running trips out of Portishead.
                                                              husband and I have just come back from
    THINK PD!                                                 week in Scotland   and we are due to travel
                                                              down to Devon in a few weeks time.
                                                                                                     All I
                                                                                                                        We are able to perform wedding
                                                                                                                        blessings,     corporate       events,
                                                                                                                        teambuilding days aboard - it certainly
           By Janet Wild, Clinical Education Manager,          need to do is set my equipment  up in our                keeps me very busy! The boat business
                                                                                                          t
                                     Baxter Healthcare
                                                               room. One year we even wen                              has been a dream of ours for a while
                                                               caravanning  and I ended up sleeping in                 and with me being on home dialysis
                                                                                                      just
                                                               the lounge with my equipment! You                       instead of travelling to hospital three
                                                               have to adapt to your surro undings.                    times a week, it means it is a dream
    Peritoneal Dialysis (PD) has been the                                                                              we have been able to make come true.
    treatment of choice for home dialysis                                                                             I have even stayed on the boat
    patients since it was developed in the early                                                                      overnight. I simply plug my machine
    1980s, with over 100,000 people currently                                                                         into the mains and that’s it.
    using it worldwide including 4,500 in the UK.

    The distinct advantages of Peritoneal Dialysis
    include its flexibility and the ability to fit it into
    work, family and social activities. Patients are
    able to dialyse in the privacy of their own home,
    with the added bonus that support from the
    hospital renal unit is available at any time.

    It’s a simple form of dialysis that uses a natural
    membrane inside the abdominal cavity to filter
    the waste products and excess fluid that                      Yvonne Warhurst
    accumulates in the blood of people with kidney
    failure. Dialysis fluid is instilled into the
    abdominal cavity via a permanent small plastic
                                                             A large proportion of patients prefer to do their
                                                                                                                                 Pamela Iannetta
    tube that exits in the body just below the belly
    button. The dialysis fluid is exchanged regularly,       dialysis overnight whilst they are asleep. This
    removing the waste products and water each               automated form of PD (APD) uses a machine
    time the used dialysis fluid is replaced. Unlike         that is programmed with the patients’ specific        For patients who aren’t able to do all of the
    haemodialysis, which is usually done three times         prescription. Once the patient has connected          dialysis themselves, assisted APD is a particular
    a week, PD provides continuous dialysis, thus            themselves to the machine, it exchanges the           benefit. A trained healthcare assistant visits the
    preventing excessive build-up of fluid and               dialysis fluid repeatedly, allowing the patient to    patient’s home once a day to set up the
    wastes. Patients often say this makes them feel          sleep. APD machines are unobtrusive and               machine. All the patient or their carer has to do
    more stable because they don’t experience wide           portable, meaning patients can travel as easily       is connect to the machine at bedtime. Assisted
    fluctuations in fluid balance or biochemical             as those on CAPD.                                     APD is available to patients who have been on
    status.                                                                                                        PD for sometime and may be finding it more
                                                             Support for home PD patients is extensive.            difficult to cope. It’s also of benefit to people
    PD is the most portable form of dialysis. The            Thorough training is given to patients and close      who have physical limitations, such as arthritis
    equipment can be carried in the boot of a car            relatives in all aspects of the treatment. Patients   or frailty, making some aspects of the dialysis a
    enabling short trips away to be spontaneous.             can receive their training in their own home, in      burden.
    For longer journeys, or those that are further           the hospital or at a specialist training centre
    afield, the supplies can be delivered to most            from specially qualified nurses. Most people can      Others use assisted APD as an extra support
    parts of the world. This allows patients to travel       learn the techniques within a week; however           when they first go home on dialysis, until they
    for work, family or on holiday with a little             training is always tailored to the individual and     gain confidence to do the treatment unaided.
    advance planning.                                        so varies, depending on the circumstances.
                                                             Once at home, help and support is always at           Home dialysis is a key priority for NHS Kidney
    CAPD (Continuous Ambulatory Peritoneal                   hand. The specialist PD nurses are only a phone       Care and the Department of Health. The vast
    Dialysis) patients perform on average four               call away to give advice and information. The         majority of people with kidney failure are
    manual exchanges of the dialysis fluid a day.            home dialysis nurses also visit patients at home      suitable for dialysis at home with PD. It’s an
    Each exchange takes 30 – 45 minutes and can              regularly to perform simple checks, provide           effective and flexible form of dialysis that has
    be done almost anywhere there is a clean and             support, offer encouragement and practical            been used widely and successfully by many
    convenient place.                                        guidance.                                             kidney patients for decades.


                                                                                                                                                                        7
               \
        Pooled (or ‘paired’\) Donation
    When Brian and Linda Gracey wrote a letter to            So what options did I have? At first I looked to my
    Kidney Life asking us to help them raise the profile     family in the hope that one might become a
    of pooled (sometimes referred to as ‘paired’\)           suitable and willing living donor. I have two
    donation by printing their letter on our letters’        brothers, both of whom are fit and well, two sons
    page, it was clear to us that, as the success of the     who are also fit and well, and a loving wife who
    whole concept of pooled donation depends on as           has always promised that she would consider
    many people as possible registering their interest       donating if necessary. All these options we
    in it, it required more of a focused investigation. So   explored but for one reason or another are now
    we took a look at Brian, who is waiting for a            not viable. We then learnt of the Pooled Kidney
    kidney transplant and Brian’s wife Linda who             Donation Scheme.
    wishes to donate a kidney, along with Paul who
    has now received a successful kidney transplant as       My wife and I have recently joined this scheme and
    a result of joining the scheme with his mother-in-       our first matching run was in July 2009. Although
    law who wanted to donate a kidney, and Carol,            there were no matches for us at that time we were      Figure 1 Two and three-way exchanges
    who in an unrelated ‘pool’, became a living donor        astonished to learn that so few couples are
    so that her husband might receive a kidney               registered on the scheme. Despite this, a high         All transplant centres in the UK have registered
    transplant from it.                                      number of matches are regularly found, and             pairs for the scheme, which is managed by NHS
                                                             obviously more would be found if the scope of the      Blood and Transplant at its Bristol base for Organ
    And outlining details of the scheme and how it           scheme was broadened. We asked ourselves why           Donation and Transplantation. Pairs must be fully
    functions, Rachel Johnson of National Health             the number of couples registered is so small given     worked up and ready to proceed with a transplant
    Service Blood and Transplant (NHSBT) explains            that there are over 7000 patients waiting for a        and every three months a computer program is run
    what goes on behind the scenes and how pooled            kidney transplant? Is it ignorance, fear, or           to identify and prioritise possible paired or pooled
    donation might benefit you if you are waiting for a      something else? Although we do not know, we            exchanges. Transplant centres are then notified of
    kidney transplant, or are someone wishing to             suspect it is the former.                              the results so that tests can be carried out to
    donate one. If this scheme is something you would                                                               confirm compatibility between the matched
    like to know more about, speak to your renal unit’s      Either way, the Pooled Kidney Donation Scheme          donors and recipients. Pairs must also be seen by
    transplant coordinator and he or she will talk to        presents a wonderful opportunity for new life but      an independent assessor after which approval for
    you about your suitability.                              it needs more couples to participate. The more         the transplant must be gained from the Human
                                                             people who participate in the scheme, the greater      Tissue Authority.
    My wait in the Pool                                      the chances are for a match and therefore for a
                                                             kidney transplant to take place. For every couple      When the scheme started there were
                                         By Brain Gracey     that joins, the chance for at least two patients to    approximately only 10 pairs registered but this has
                                                             receive a new kidney is realised.                      steadily increased to over 140 pairs in the October
    My name is Brian Gracey and I am 56 years old. I                                                                2009 matching run. This means that there is
    retired from my full time job two years ago but still    If you are close to a kidney patient I would like to   greater potential to find matches for transplant,
    work two days a week. My kidney problems began           ask you to please consider joining this amazing        although this is limited somewhat by the generally
    32 years ago in 1977. I was fortunate to be              scheme. By doing so, you will be making a positive     high levels of sensitisation in patients registered
    diagnosed at an early stage in my renal failure and      step towards enabling your partner, mother, father,    and the availability of recipients of certain blood
    did not require a transplant until 1988 when I           son or daughter to lead a normal life again, free      groups.
    received a kidney from my mother. For 19 years I         from dialysis.
    lived a normal, fulfilling life in the City of London,                                           Thank you      Since the scheme started, over 300 pairs have
    and was able to do pretty much everything I                                                                     been registered, of which about 35% have been
    wanted to do. But in 2007 my health started to                                                                  identified for paired (or pooled) donor transplant.
    deteriorate and twelve months later my kidney            Rachel Johnson (NHSBT) explains how the                Unfortunately, over 50% of the identified
    failed and I started haemodialysis. I had never          scheme works                                           transplants have not proceeded and this is
    experienced dialysis before. It was a real eye                                                                  typically because of late identification/notification
    opener for me. I was carrying so much fluid it was                                                              of alternative transplants and tests demonstrating
    difficult to determine my dry weight, my blood           The National Scheme                                    incompatibility that was not anticipated. After
    pressure was all over the place and I suffered                                                                  identification of a possible paired/pooled
    painful cramps. It was difficult to come to terms        for Paired Living                                      transplant through a matching run, patients will in
    with. The freedom that I had become so                                                                          future be suspended immediately from the
    accustomed to disappeared overnight.                     Kidney Donation                                        deceased donor transplant list so that the
                                                                                                                    paired/pooled donor transplants have the best
                                                             Blood group or tissue type incompatibilities           possible chance of proceeding. It is important that
                                                             between a potential donor and their intended           patients registered for the scheme are fully
                                                             recipient mean that many potential living donor        committed to it, as transplants not proceeding
                                                             kidney transplants are difficult if not impossible.    impact on all donors and recipients in the
                                                             From September 2006, the Human Tissue Act              exchange group and result in delayed or missed
                                                             enabled paired donation to commence in the UK.         opportunities for transplant.

                                                             A national scheme was established whereby              On a more positive note, by the end of 2009, 44
                                                             incompatible donor-recipient pairs can exchange        patients had successfully received a transplant
                                                             kidneys so that recipients can receive alternative     through the scheme, mostly through two-way
                                                             compatible living donor organs. Exchanges are          exchanges, but there were two three-way
                                                             identified between two or three incompatible pairs     exchanges in the last two months of 2009. Many
                                                             (see Figure 1).                                        other registered pairs have left the scheme as a
    Linda and Brian                                                                                                 result of an offer of a deceased donor kidney or
                                                                                                                    due to an incompatible living donor transplant


8
planned after a number of unsuccessful paired
donation runs. A further eight paired/pooled              When you love                                             hat and started to talk about the pooled or paired
                                                                                                                    donor scheme. Yet another lifeline for me was
donor transplants are planned in the first few
weeks of 2010 and over 150 pairs will be included         someone       By Carol O’Grady
                                                                                                                    appearing. I do not mind admitting at this point,
                                                                                                                    life on dialysis was something to dread and to this
in the January matching run in which further                                                                        day my feelings remain.
matches will be identified.
                                                                                                                    Once the scheme was explained, my initial
On the day of transplant, operations are carried                                                                    question of why would someone do this was
out simultaneously in the two or three hospitals                                                                    replaced by the realisation that four people were
involved.    The kidneys are removed and                                                                            directly benefitting from the process and many
transported quickly to the recipient’s hospital                                                                     other indirect family and friends would see
where they are transplanted, typically within five                                                                  someone they cared for return to a more normal
hours.                                                                                                              life.

There were 924 living donor kidney transplants in                                                                   Further tests including a plasma swap were
the UK in 2008 and 10 of these (1%) were paired                                                                     performed before the first compatibility run, which
donor transplants. In 2009 there were 948 living          Sean and Carol                                            takes place every three months. An anxious time
donor transplants and 30 (3.2%) were as a result                                                                    ensued before the results were known, and on that
of the paired/pooled donation scheme.                     When you truly love someone there’s nothing you           initial run they were negative. A desperate feeling
                                                          won’t do for them. Donating a kidney was a small          was felt by all including people at Guy’s. It was a
In order to increase the potential of paired              price to pay in exchange for my husband’s life. In        difficult time for me being in between jobs and
donation, other countries, such as the US and the         my thoughts I gave my kidney to my husband                having to postpone dialysis until settled in a new
Netherlands, have implemented what is known as            but in the back of my mind I knew I was saving            role. The second run, approximately three months
domino (or chain) paired donation. This involves          two peoples lives; not only was I giving my               later, again proved negative. This was again a
an altruistic living donor (someone who wants to          husband a chance of a normal life but I was also          massive let down as I knew my well being was
donate a kidney anonymously to a stranger)                giving life to another person, who like my                deteriorating and dialysis loomed. The positive
whose kidney is typically allocated to the most           husband, would have a chance of a better quality          side at this point was that I had joined a company
appropriate recipient on the deceased donor               of life. That is a fantastic feeling.                     (Neopost Ltd) that, I was to find out in the near
transplant list. However, by donating their kidney                                                                  future, was very understanding of my plight and
into the paired donation pool, one or more paired         In the back of my mind was the worry that "what           accommodated all the necessary visits to hospital
donations can be triggered, involving a donation          if it doesn’t work?” but that’s the risk I knew I was     without question.
back to the deceased donor list. This approach has        willing to take. I didn’t want to spend the rest of
been agreed in the UK and will be implemented             my life wondering "what if". After the operation I
later this year (see Figure 2). The only caveat is that   suppose I did feel a little lost. I felt like there was
if a high priority patient on the deceased donor list     no need for me anymore and my emotions where
is identified, then that transplant will still proceed,   all over the place. There was a little bit of
although this is only likely to affect 8% of altruistic   discomfort immediately afterwards, but I knew
donor kidneys.                                            that was temporary. You just have to take one day
                                                          at a time - I had, and still have fantastic support
This change will mean a greater chance of                 from my family and from the team at Portsmouth
transplant for the many very difficult to match           Hospital who were great - I couldn't have asked
patients on the paired donation list, particularly as     for a better team of people to look after me. The
those having been through most unsuccessful runs          day after the operations my husband was up and
will be prioritised.                                      about. The difference in his skin colour and eyes
                                                          was so noticeable and just seeing him laughing            Paul and his wife, Sally Anne
Anyone interested in finding out more about the           and smiling was the best feeling ever. I knew I had
paired/pooled donation scheme can see the                 made the right decision. Also, seeing him feeling         I postponed dialysis as long as I could, against
NHSBT website www.organdonation.nhs.uk/                   so well made me realise just how ill he had been.         medical advice for a number of reasons and
ukt/about_transplants/organ_allocation/kidn               He has just come alive again and that’s what I set        subsequently suffered healthwise: I needed to
ey_(renal)/living_donation/paired_pooled_do               out to achieve for him and our family. I have no          secure a method of support for my family. In
nation.jsp and should contact their local                 regrets at all and if I could do it again I would.        January the news we had all be waiting for came,
transplant coordinator about how to join.                                                                           a pooled donor had been found! The relief, and
                                                                                                                    dare I say it, the joy was incredible for all.
                                                          My mother-in-law                                          The time for dialysis came during February and
                                                          and me         By Paul Hinkins
                                                                                                                    was fraught with further drama - a story for
                                                                                                                    another time! But the knowledge that a transplant
                                                                                                                    was coming was sustenance enough to get me
                                                          After my first kidney transplant had begun to fail        through.
                                                          my mother-in-law, Margaret, decided to put
                                                          herself forward as a possible donor. This was yet         My transplant took place on April 14 and for three
                                                          another humbling experience as my wife had been           months was perfect - a bout of rejection has since
                                                          my first donor - I was surprised at how easy the          been dealt with and the knife edge that I walk on,
                                                          decision seems to have been in both cases. I was          between rejection and BK virus is being controlled
                                                          not used to this kind of self sacrifice, for my           well by the consultants at Guy’s.
                                                          benefit.
                                                                                                                    The ‘pooled donor’ scheme is a great
                                                          Tests were carried out in the normal way for live         innovation for kidney patients, but there are
                                                          donation, but as time went on it became clear that        still many decisions for the patient to make to
                                                          a direct donation was not going to be possible. But       ensure that his/her family can cope and see
                                                          as usual, in my experience, Lisa Burnap and the           the light at the end of the tunnel in the same
Figure 2 Domino (or chain) paired donation
                                                          team at Guy’s pulled yet another rabbit out of the        way the patient does.


                                                                                                                                                                          9
                                                             DONAL’S                                                                                     TIME
                                                             Each Kidney Life issue we ask Dr Donal O’Donoghue (UK Director of Kidney Care) to respond
                                                                                                                          \
                                                             to a question sent in by a reader. For this issue we have selected a question sent in by Kirit
                                                             Modi (thanks Kirit!). If you have a question you would like answered by Dr O’Donoghue please
                                                             email this into Kidney Life (see page 3 for contact details)


                                                             maximised. One of the key recommendations was             ethnic groups. 2% of the organ donors and 12% of
                                                             that patients are put onto the national transplant        the transplants were Asian or black.
                                                             list within six months of their anticipated dialysis
                                                             start date.                                               As mentioned above, waiting time for a transplant
                                                                                                                       is influenced by ABO blood group. The average
     "I am a fifty year old man of Indian origin             There are two biological barriers to successful           waiting time for a transplant for blood group O, A,
     and have been on dialysis at the local                  organ transplantation. Firstly, as is the case for        B and AB recipients was 864, 569, 1360, 528 days
     hospital for five years. I am doing well                blood transfusion, the donor must be ABO blood            respectively. Blood group B patients therefore wait
                                                             group compatible with the recipient. Waiting time         by far the longest for a compatible donor. Only
     but would like to have more control over
                                                             reflects the proportion of patients and donors with       10% of white patients compared with 24% of
     my lifestyle. I am on the transplant                    each blood group. About half of the patients on the       black patients and 38% of Asian patients are blood
     list. My close family members have                      national kidney transplant waiting list are blood         group B.
     offered their kidney to me but none has                 group O. We know that blood group O patients
     been suitable because of health                         wait slightly longer for a transplant than group A or     As a consequence of genetic variability between
     reasons related to the potential donors. I              AB patients but not as long as group B patients.          individuals, there are many different tissue types.
     have been told that my chances of                       Approximately 15% of patients on the list but only        Some are more common than others and in
     getting a suitable transplant are very low              10% of donors are blood group B so those patients         addition there is variation between ethnic groups
     because of my ethnic background. I                      wait the longest.                                         as to the most frequently occurring tissue types.
                                                                                                                       This means that patients with rarer tissue types can
     have heard that there has been a huge
                                                             Secondly, it is essential to be sure that the recipient   wait longer for a matched donor and this is more
     increase in the registration for kidney                 does not have antibodies directed against the             likely to be the case when donors are
     donors over the last few months.                        donor’s HLA antigens (tissue type). If these              predominantly from one ethnic group and the
     However, I am not sure how this will                    antibodies were present at the time of transplant         patient is from another.
     affect my chances. I would be most                      they would cause immediate and untreatable
     grateful for your advice."                              rejection. Someone may produce antibodies to HLA          Therefore the two biological factors, blood group
                                                             antigens if their immune cells have been exposed          and tissue type, underlie the longer wait for a
                                                             to another person’s tissue type that is different         transplant experienced by Asian as compared with
                                                             from their own. That can happen during pregnancy          white patients. In the study described above, Asian
                                                             because the baby will inherit some of dad’s tissue        patients waited on average 1849 days whereas the
                                                             type, following blood transfusion and previous            average wait for white patients was 1133 days.
                                                             transplantation. It will be easier to find a donor for
                                                             a patient with no antibodies, than for someone            In 2003 a Task Force was set up to review the 1998
     Thank you for this interesting question that raises     with antibodies and so if you have antibodies to          National Kidney Allocation Scheme. One aim was
     a number of important issues. I am pleased to           HLA then you will wait longer for a transplant.           to help patients who had waited a very long time
     learn that you are doing well but also fully                                                                      to receive transplants by giving them greater
     appreciate the restrictions that hospital based         Having ensured that a recipient has no ABO or HLA         priority. Another aim was to resolve some of the
     haemodialysis places on such things as your diet        antibodies directed against the donor, the next           apparent inequalities in access to transplantation
     and fluid intake, the ability to tailor the dialysis    stage of the national allocation process is to            resulting from biological differences whilst
     prescription to your own individual needs and of        minimise the HLA (tissue type) mismatches                 maintaining good transplant survival. A revised
     course flexibility for travel, work and family          between donor and recipient. Although HLA                 National Kidney Allocation Scheme was introduced
     pursuits.                                               mismatching does not prevent successful                   in April 2006. The scheme prioritises patients with
                                                             transplantation, it is well established that HLA          ideal tissue matches (000 HLA mismatches) and
     Home dialysis can give you far more control over        mismatched transplants are more likely to fail in         then assigns points to patients based on the level
     the management of your kidney problems and              the long term than those that are matched.                of tissue match between donor and recipient, the
     dialysis regime than is possible in a hospital                                                                    length of time spent waiting for a transplant, age
     setting. The effects of transferring from hospital to   A recent study of the patients awaiting a kidney          of the recipient (with a progressive reduction in
     home dialysis on lifestyle options, feelings of         transplant in the UK between 1998 and 2005                points given after the age of thirty) and location
     wellbeing and objective measures of kidney health       demonstrated an imbalance between different               points such that patients geographically close to
     can be dramatic. The patient stories speak for          ethnic groups in relation to their representation on      the retrieval centre receive more points. The
     themselves. I see that you will have started dialysis   the kidney transplant list, in the donor population       patients with the highest number of points for a
     in 2004 or 2005, around the time the National           and in the population of kidney transplant                particular pair of kidneys are offered these kidneys,
     Service Framework for Renal Services was                recipients. The data showed that 92% of the UK            no matter where in the UK they receive their
     published. Standard 2 of the Framework gave             population was white, as was 77% of the kidney            treatment. There is careful monitoring to ensure
     individuals approaching end stage renal failure the     transplant list, 97% of the donor population and          that the scheme fulfils the objectives of improving
     right to receive timely preparation for renal           88% of the transplants. In contrast, 6% of the UK         equity of access to renal transplantation.
     replacement therapy so the complications and            population was Asian or black whereas they
     progression of their disease are minimised and          comprised 13% of the transplant list; this reflects
     their choice of clinically appropriate treatment        the increased incidence of renal disease in these         >>>>>> continued on page 19



10
 8
Please scroll down to non-advertisement page which follows




                  Advertisements
      2009 Transplant and
                                                                                     Number of patients (active) on transplant waiting list in the
                                                                                     UK at end of 2009

                                                                                     Waiting for                               Number*
      Waiting List statistics                                                        Kidney                                    6937
                                                                                     Pancreas                                  49
      Number of Kidney Transplant carried out in the UK in 2009                      Kidney/pancreas                           286

                       Kidney          Kidney/Pancreas            Total
                                                                                     *NB - these figures do not include those patients who would benefit
      Deceased         1439            159                        1598               from a transplant but, for whatever reason, have not been placed on the
      Living           949             0                           949               transplant waiting list.

      TOTAL            2388            159                        2547               With very many thanks to Professor Phil Pocock of NHSBT for
                                                                                     providing these statistics.



     Encouraging response to ‘Prove It’ campaign
     The (NHSBT) ‘Prove It’ campaign was launched across the UK on the 2nd November. The campaign launch focused on
     the gap between people’s good intentions and action.

     The press release highlighted the fact that while 96% of us would accept an organ if we needed one, only 27% of us have joined the NHS Organ Donor
     Register (ODR). Media interviews were handled by Lynda Hamlyn, Chris Rudge and Sally Johnson. Donor Transplant Coordinators around the UK provided
     additional support by giving interviews to the regional and local media. Transplant recipients provided the human interest angle for journalists.

     Before the launch a photo opportunity was offered to the media to highlight the fact that at least 33 people who needed a transplant would die in the 11
     days up to the launch of the campaign. Two-year old Louisa McGregor-Smith, who received a heart transplant at Freeman Hospital, Newcastle when she was
     just five months old, was dressed as ‘Dorothy’ from the Wizard of Oz and gave a heart to 33 ‘Tin Men’

                                                                                                                         The pre-campaign teaser and the launch
                                                                                                                         generated 168 pieces of coverage in the
                                                                                                                         broadcast, print and online media, nationally
                                                                                                                         and regionally. The launch was also covered by
                                                                                                                         the trade press and consumer magazines with
                                                                                                                         further interest still being expressed. The initial
                                                                                                                         response to the campaign has been extremely
                                                                                                                         encouraging. During November, more than
                                                                                                                         162,000 people visited the organ donation
                                                                                                                         website of whom over 147,000 were new
                                                                                                                         visitors to the site. The television advert ran
                                                                                                                         during the highly popular X-Factor on the 8th
                                                                                                                         November resulting in 5,273 visits to the
                                                                                                                         website.


                                                                                                                         Front page (NHSBT) ‘Bulletin’ - issue 72.
                                                                                                                         To read article in full please go to:
                                                                                                                         www.organdonation.nhs.uk/
                                                                                                                         ukt/newsroom/ bulletin/bulletin.jsp


                                                                                                                         ‘Prove It’ campaign gets off to a heart felt start.
                                                                                                                         Photograph by kind permission of NHSBT press department.



      Leaving a Legacy to the NKF                                                                           Name of Giver ........................ ..........................................................


      One way of helping the NKF is to include a legacy to the charity in your will. More than two          Amount to be given...........................................................................
      thirds of adults die without a valid will, which results in their estates being allocated according
                                                                                                                      I wish to make a bequest to the NKF as shown below.
      to the law, instead of according to their wishes.
                                                                                                            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 the Solicitors Regional Directory which is        Date...................................................................................................
      available in your local library.                                                                       The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire S81
                                                                                                                             8BW Charity Number 1106735
      The Law Society has a website at www.solicitors-online.com and you can get more information
                                                                                                               Please send or hand this coupon to your solicitor together with
      on wills on www.make-a-will.org.uk .The NKF Helpline on                                                     any specific instructions in order that your wishes can be
      0845 601 02 09 can also give you advice on how to include the NKF in your will.                                  incorporated into your will. Many Thanks - NKF



12
                                                 “There is
...So said one of the                            a small                                                             option. It requires a lot more support
                                                                                                                     both for the patient and the family
presenters at a recent
meeting held in London to                        window...... to get                                                 and friends of the patient. Patients,
                                                                                                                     for example, need greater care in
discuss end of life facilities                               the end                                                 terms of getting analgesia when they
for kidney patients. Barry                                                                                           need it (without having to wait until
Noon attended on behalf of                                   of life                                                 it’s convenient for the single nurse on
                                                                                                                     duty) and jolly good symptom
Kidney Life.
                                                         care right”                                                 management.
In an audience of about 200, drawn
                                                                                                                    This seems to come as a bit of a
mainly but not exclusively from the palliative
                                                     dialysis is sometimes regarded as the ‘holding        surprise to some clinicians/doctors (who
care field, sat one lonely patient! Speakers, who
                                                     area‘ before transplantation.                         unfortunately weren’t, apparently, among the
were a mixture of experts in kidney and
                                                                                                           delegates in London).
palliative care, discussed decision making in
end-stage kidney disease, and issues such as         There are also more older people with other
                                                     diseases going on to dialysis, and there are          The message from the meeting is that end of
quality of life on dialysis and conservative
                                                     people who are waiting for their turn to come         life is something that all kidney patients need
kidney management.
                                                     up to receive their first, second or, in some cases   to think about, to plan for and come to a
                                                     third, transplant. This means that many people        consensus with their families well before the
It was clear that there has been a great deal of
                                                     are growing old on dialysis - for them it is a way    eventual need arises.
research in palliative care for cancer and other
illnesses - but not so much for kidney care.         of life with a finite end. And there are those
                                                     who have made a decision not to go back on to         It’s a bit like making a will: no one really likes to
Indeed, until the publication earlier this year of                                                         think about it but it’s definitely a job that needs
a document called End of Life Care in Advanced       dialysis - for whatever reason. All these patients
                                                     are to some extent in the line of fire for end of     to be done. Preferably sooner rather than later.
Kidney Disease, there has been precious little
about the specific needs of patients in kidney       life care.
                                                                                                           Barry Noon was diagnosed with kidney failure
failure. It’s not something we all like to talk                                                            in 1969 and began home dialysis in 1971. He
about.                                               But what can they, and we, expect in the final
                                                     months/weeks/days/hours? Can they expect to           received a deceased-donor transplant in 1984.
                                                     make a ‘good death’? Certainly everyone would         (He is waiting for a long service medal to be
In the old days - when I began treatment - it                                                              presented to him by Guy’s Hospital!\)
was rather regarded that you had to ‘serve your      hope to do so. But this raises an important
time’ on dialysis before you would be                question:
considered for transplantation. Not, thank           Is your unit geared up to cope?                       To download a copy of End of Life Care in
goodness, anymore. These days many people            End of life treatment involves a level of care        Advanced Kidney Disease, go to www.endof
come to transplantation as the first choice and      that is different from the current hospitalised       lifecareforadults.nhs.uk/eolc/kidney.htm




                                                                                                                                                                   13
     Dialysis in
     my Caravan
                                                                        By Barney Howlett

     Ten years ago I was told that my kidneys were failing and I
     would eventually need to have renal dialysis. The thought
     horrified me and I was extremely concerned. I really thought
     that my life as I knew it was over and the future seemed all
     gloom and doom. It could not have been further from the
     truth.

     Eventually I was asked what form of dialysis I preferred and I chose
     peritoneal dialysis (CAPD). I made that decision because I felt it
     would be less restrictive than haemodialysis in the hospital which
     would mean being at the hospital at least three days each week.

     On 8 October 2009 I went into hospital to have the catheter fixed
     into my peritoneal cavity. This procedure I must admit was not at all
     pleasant but I soon recovered. Ten days later I started CAPD which
     meant an exchange of fluid four times per day, seven days each
     week. I had fantastic support from the team at the Renal Unit at the
     Norfolk and Norwich University Hospital and continue to have the
     same level of support.

     After six weeks I began to feel very much better not realising how ill
     I had been feeling before I started the dialysis. I had far more energy
     and began to think well, life is certainly not over yet.                                Dialysing in my caravan

     My charge nurse told me about a portable bag for warming the fluid. This bag could be plugged into a normal 240volt plug or a 12volt supply such as
     the cigarette lighter in the car. I went on the internet to look at the bag which was being sold by www.renalfreedom.com At first I thought the bag
     was very expensive at £249 plus vat but then I considered the freedom it would give me. It has proved to be worth every penny and has changed my life
     completely. At first I used the bag in the car if we went for a day out. This worked very well on a lovely sunny day but on a cold day it was more difficult
     to keep the fluid warm when the car engine was switched off. Visiting friends and relatives was of course no problem - I simply plugged the bag into
     their electricity supply when I arrived.

                                                                                 This spring, with renewed enthusiasm for life, my wife and I invested in a 14 year old motor
                                                                                 home. Now my portable bag really did become an excellent buy. I can manage to fit 16
                                                                                 days supply of fluid into the motor home and off we go. On long journeys such as a trip to


           K.C                       Holiday
                                     Dialysis     1995

                                     Centre (Bournemouth)
                                                          Established
                                                                                 Scotland recently I simply stopped on a lay-by at lunchtime and did my dialysis. Of course,
                                                                                 at the same time, my wife can prepare a snack for us! We also have been to Wales and to
                                                                                 the South Coast plus several odd 2-3 days outings.

            FRIENDLY FAMILY RUN UNIT                                             One further ambition was to be able to return to swimming, something I did daily prior to
            SITUATED ABOUT  100 YARDS                                            the commencement of dialysis. With a supply of waterproof dressings supplied by the Renal
            FROM THE BEAUTIFUL SANDY
                                                                                 Unit I am now swimming three days per week, which has given me a tremendous boost.
            BEACHES OF SOUTHBOURNE.
            BOURNEMOUTH TOWN AND
            ITS FAMOUS PIER ARE APPROXIMATELY TWO MILES AWAY.                    The most important thing with CAPD is to sustain a very high standard of hygiene and
                                                                                 wherever I do my exchange of fluids cleanliness is the main priority. In the car I use a hand
           • Parking available and has wheelchair access                         gel to clean my hands and in the motor home we have a wash basin.
           • Dialysis facilities offered all year round
           • Normal opening hours 8am to 8pm
                                                                                 To anyone facing the daunting thought of impending dialysis do not be afraid like I was.
                 Advertisement
           • Arrangements made with local hotels situated within
             a few minutes walk of the unit, to offer a discount on
                                                                                 There will always be excellent support from the team at the Renal Unit. I hope also you will
             accommodation                                                       be as fortunate as myself and have good support at home too. I receive a great deal of
           • First-line medical support available                                encouragement to make the most of every day and do every thing I can to improve our
           • The unit is staffed by well-trained nurses and the                  quality of life. My general health has also improved 100%.
             Director, having over 20 years experience in this area
             of care, ensures a warm and friendly atmosphere is
             maintained at all times.                                            I am already planning our holidays for 2010 and have booked a cruise. I have been assured
                                                                                 that all the fluid will be delivered to the cruise liner for me and the ship’s company has
            35 Southwood Avenue, Southbourne,
                                                                                 been very helpful in giving me the name and telephone number for a member of staff who
              Bournemouth, Dorset BH6 3QB
                  Tel/Fax: 01202 422311
                                                                                 will be responsible for co-ordinating all the preparations for our holiday. I have proved
                                                                                 there really are lots of things to look forward to - things I thought had gone forever.




14
NOTICEBOARD
Drug Safety Warning                                                                  United we stand…
Kidney Care Tsar, Dr Donal O’Donoghue, has issued a timely drug
safety warning on his blog, outlining the importance of being
prescribed and taking only brand name Ciclosporin.

“Ciclosporin has a narrow therapeutic index which means that the dose
has to be very carefully adjusted to ensure the blood and tissue levels are
spot on, not just close, and patients should be stabilised on a single brand
of Ciclosporin because switching between different types or formulations
without close monitoring may lead to clinically important changes in
blood levels even if the same dose is taken. For kidney transplant
recipients that risks rejections or toxicity from the Ciclosporin. All products
that contain Ciclosporin are interchangeable ONLY if careful therapeutic
monitoring takes place. Prescribing and dispensing of Ciclosporin should
therefore be by brand name to avoid inadvertent switching. Patients as
well as prescribers and pharmacists should be fully aware of the brand                                             NKF United don’t let a flurry of snow
prescribed. It’s important for patients to challenge the prescriber or                                             stand in the way of a practice session!
pharmacist if a different brand or formulation seems to have been
provided eg if the drugs look different in colour or shape or even when           NKF United is keen to play charity matches in aid of YOUR KPA or the
the box or packing have changed.”                                                 NKF, ahead of the FA League season starting in 2010. The team already
                                                                                  has plans to play a World Kidney Day charity match on 11 March. Is
To read this warning in full please go to                                         your team up for a challenge?….to arrange a fixture write to
renaltsar.blogspot.com/2009/12/bedtime-reading-drug-safety-                       fitnessandfun@nkfunited.com or visit its website at
update.html                                                                       www.nkfunited.com or via www.kidney.org.uk - which is where you
                                                                                  will view the team in all its frozen glory at a practice session in the snow,
                                                                                  in the photo gallery!
World Kidney Day 2010                                                             Breaking news....... the team has also been accepted into the FIFA and
                                                                                  UEFA supported Futsal league as well as the Leicester and District Football
                                                                                  Association league.


                                                                                  Cymdeithas Cleifion
                                                                                  Arennau Cymru

                                                                                  Are you a kidney patient or kidney patient carer living in Wales? Don’t
                                                                                  forget to get in touch with the Welsh Kidney Patients’ Association
This is the last chance we have to remind you about WKD and how                   (Cymdeithas Cleifion Arennau Cymru). You will find a very warm welcome
important this annual ‘day’ is in terms of highlighting the plight of             into the fold and many fellow patients and carers who share your
kidney patients all over the World. WKD this year is 11 March, and                experiences. They are an incredibly welcoming association and would
we would really love to receive as many photos and WKD stories                    love to say hello to YOU….You will always find useful information,
as possible for the next issue of Kidney Life. Please email them in               support and a friend!
to NKF HQ (see page 3 for contact details) and they may well appear               Call 029 2074 2735 or go to www.wkpa.org.uk
on the front cover of the Summer 2010 issue of Kidney Life!!
                                                                                  British Transplant Games 2010
Renal Radio is launched                                                           Bath 19-22 August
Renal Radio is an excellent worldwide Internet broadcasting service You
can access the live music and chat shows by going to the Renal Radio              Can you run, jump, throw a ball, row, shoot an arrow, swim or play any
Home page at www.renalradio.com/index.php then selecting the                      game involving the use of a net (speaking as a true sportswoman
‘entertainment’ option along the top panel and then the ‘on air’ option           here….\)? Then it is not too late to get your unit’s team entered into the
from there. We do have a link from the NKF website but this will not take         2010 British Transplant Games to be held this year in Bath. The organisers
you directly to the ‘on air’ broadcast. Give it a go and let us know what         are TSUK and can be found at www.transplantsport.org.uk where you
you think!                                                                        will find details of all events and entrance criteria. We LOVE the
                                                                                  stories and photographs you send in from the games, so
“Renal Radio seeks to educate, inspire and entertain through content that         please let us all share in your glory!
reflects the diversity of a global dialysis community; dialysis patients,
healthcare professionals or those with a general interest in this area.
Renal Radio offers an amazing choice of entertainment and                         You can pay by card!
www.renalradio.com/forwards.php enlightening interviews as well as                Credit and Debit cards can now be accepted on the NKF
informative podcasts for you to select at your leisure.”                          website www.kidney.org.co.uk for all NKF products and
(taken from the Renal Radio Home page)                                            services.

                                                                                                                                                                  15
     In Europe, the survival of dialysis and    A Japanese study has found no             Vascugel implants contain tissue-         virus eradication. They recommend
     kidney transplant patients continues       evidence that restricting protein         engineered endothelial cells (cells       that regimens should consist of 3
     to improve. Other good news is a           intake prevents the progression of        that line the blood vessels). In animal   million units of interferon three times
     slowing of the annual rise in the          kidney disease in people with             studies, Vascugel has been shown to       weekly for at least six months, with
     number of new patients needing             diabetes. Researchers randomised          reduce clotting and inflammation,         patients encouraged to complete the
     renal replacement therapy (RRT;            112 Japanese patients with type-2         and prevent narrowing of the blood        full course.
     dialysis or transplant) for established    diabetes and kidney disease to five       vessel.                                         Clinical Journal of the American
     kidney failure, and stabilisation of the   years of either a low-protein diet or a      Journal of Vascular Surgery 2009;             Society of Nephrology 2009; 4:
     rate in some age groups. These             normal-protein diet. There was little                               50: 1359-68                                    1449-58
     conclusions are based on analysis of       difference in outcomes between the
     data from 1997 to 2006 from 19             groups in terms of time to doubling       This Australian study found that          Stenting and surgery have been both
     European national or regional renal        of serum creatinine and mean annual       supplementation with omega-3 fatty        used to manage patients with clotted
     registries, including the UK Renal         change in creatinine clearance. The       acid reduces blood pressure, heart        arteriovenous fistula or graft. This
     Registry. The authors report that the      authors comment on the extreme            rate and triglycerides (a type of ‘bad’   systematic review found that the
     overall incidence rate of RRT              difficulty of persuading people to        cholesterol) in people with chronic       rates of successful repair appear to
     increased from 109.9 per million           follow a long-term, low-protein diet.     kidney disease (CKD) without              be similar with both techniques,
     population (pmp) in 1997 to 119.7          During the study, overall protein         diabetes. In contrast, coenzyme           though long-term results seem to be
     pmp in 2000: an average annual             intake was slightly (but not              Q(10), another dietary supplement,        slightly better if clotted forearm
     percentage change of 2.9%.                 significantly) lower in the low-protein   not only had no effect on blood           fistulae are treated surgically.
     Subsequently, the rate of increase         group than in the normal-protein          pressure but also increased heart         Randomised trials are needed to
     was much lower, reaching 125.4 pmp         group.                                    rate. Neither supplement had any          provide the high-quality evidence
     in 2006. This change was largely due             Diabetologia 2009; 52: 2037-45      effect on other measures of kidney        needed to resolve this latter
     to stabilisation in the incidence rates                                              and heart health, including               question.
     of RRT for women aged 65-74 years,         In an ideal world, care of kidney         glomerular filtration rate, urinary           Journal of Vascular Surgery 2009;
     men aged 75-84 years and patients          disease should be planned so that         albumin or total protein excretion,                                   50: 953-6
     receiving RRT for kidney failure due       patients begin dialysis with a mature     cholesterol, HDL-cholesterol, LDL-
     to high blood pressure or renal            arteriovenous fistula (AVF) or            cholesterol, glucose, insulin, or high-   Rapidly declining kidney function is
     vascular disease. Between 1997-2001        peritoneal dialysis (PD) catheter.        sensitivity C-reactive protein.           associated with a higher risk of heart
     and 2002-2006, the risk of death fell      However,       unplanned       dialysis       Journal of Hypertension 2009; 27:     problems, but not a higher risk of
     for all types of RRT, with the most        continues to occur in patients both                                      1863-72    stroke in people both with and
     substantial improvement seen in            known and unknown to nephrology                                                     without chronic kidney disease. These
     patients starting peritoneal dialysis      services, and in both late and early      A systematic review of clinical studies   findings      come      from       the
     and in kidney transplant recipients.       referrals. Based on a review of eight     found that, compared with standard        Cardiovascular Health Study, which
                    Nephrology Dialysis and     European studies including 5805           care, treatment with ascorbic acid        began in the late 1980s and recruited
        Transplantation 2009; 24: 3557-66       patients, these Canadian authors          (vitamin     C)     may       increase    people aged 65 years and over living
                                                report that rates of unplanned first      haemoglobin and transferrin, and          in four districts in the USA. In the
     Secondary        hyperparathyroidism       dialysis range from 24% to 49%.           reduce the need for EPO in dialysis       study, a rapid decline in kidney
     (SHPT) is common in people with            Length of hospital stay and the risk of   patients. The authors comment that        function was defined as a fall in
     chronic kidney disease. Since SHPT is      death are higher for unplanned            their conclusions are limited by the      estimated glomerular filtration rate
     progressive, patients often need           versus planned first dialysis. Patients   small number of studies, their short-     of over 3 ml/min per 1.73 m2 per year,
     long-term treatment to control             undergoing an unplanned first             term duration and differing               measured at entry to the study, and
     parathyroid hormone (PTH) and the          dialysis also have significantly worse    populations. They recommend longer-       three and seven years later.
     balance of calcium and phosphorus          laboratory results and quality of life    term studies to confirm the results,         Journal of the American Society of
     in the blood. Based on follow-up of        than patients with a planned start.       provide information about adverse                Nephrology 2009; 20: 2625-30
     dialysis patients included in clinical     The authors conclude that halving         events and cost effectiveness, and
     trials of cinacalcet, treatment with       the rate of unplanned dialysis could      determine whether use of ascorbic           Want to know more?
     the drug effectively maintains             result in annual savings of $13.3-        acid translates into improved
                                                                                                                                    The source of the studies is listed as the
     reductions in levels of PTH, calcium       16.1 million in Canada alone.             outcomes for patients.                     title of the journal, year of publication,
     and phosphorus for up to six years.               BMC Nephrology 2009; 10: 22         American Journal of Kidney Diseases        volume, and page numbers. For more
           Clinical Journal of the American                                                                  2009; 54: 1089-97         details on an individual study, go to
            Society of Nephrology 2009; 4:      In the V-HEALTH study, treatment                                                      www.ncbi.nlm.nih.gov/sites/entrez
                                    1465-76     with Vascugel implants appeared to        Infection with the hepatitis C virus      Under the ‘PubMed Tools’ menu, click on
                                                be safe when used to control the          (HCV) is more common in                    ‘Single Citation Matcher', complete the
     Exercise training improves aerobic         response to injury following placing      haemodialysis patients than in                      \
                                                                                                                                      boxes (‘Journal’, ‘Date’, ‘Volume’ and
                                                                                                                                    ‘First page’\) and click the Search button.
     capacity and improves heart rate and       of an arteriovenous graft (AVG) or        people not on dialysis, but it is
     left-ventricular ejection fraction (both   fistula (AVF) in dialysis patients. The   possible to treat the virus with            There may be a link to enable you to
     indicators of heart health) in             study included 57 patients (30 AVG        interferon. After analysing interferon     download the complete article, but this
     haemodialysis patients. The study          and 27 AVF) randomised to receive         clinical trials, the researchers found         may involve payment of a fee.
     included 59 patients, who were             either Vascugel or placebo at surgery.    that dialysis patients are more likely
     randomised to either no training or a      There was no difference in                to respond to treatment if they             Don’t try this at home!
     10-month, supervised exercise-             complication rates at four weeks          receive higher doses for a longer            Any changes to treatment reported in
     training programme during their            between the Vascugel and placebo          duration and complete the course of         Medical Matters were carried out under
     three-times-weekly dialysis sessions.      groups. The authors comment that          treatment. Other factors increasing             medical supervision. Never make
       American Journal of Kidney Disease       larger randomised studies are needed      the likelihood of a positive response       changes to your medication by yourself.
                           2009; 54: 511-21     to see if Vascugel can prolong the life   include female gender, lower HCV           If you are worried about your treatment,
                                                of AVG or AVF in dialysis patients.       blood levels and early evidence of                talk to your renal unit team.


16
KPA
                                                       In his address to the meeting, Dr Frankl said:           standards are compared to other units and I know
                                                       "I believe that it is important to reflect on the        that in addition to this, Roop really cares for the
                                                       extraordinary history of this group, which stretches     patients. Roop is backed by a team of nurses who
                                                       back to the beginnings of dialysis treatment in the      are truly dedicated to you as patients and to the
                                                       UK. The treatment of renal failure by means of           CXH dialysis unit itself and Su and her team will




UP
DATE
SESKPA celebrates its
                                                       dialysis and transplantation has been a major part
                                                       of Charing Cross clinical services since the
                                                       inception of this treatment in the 1960s. Before
                                                       dialysis was introduced, patients with kidney
                                                       disease simply did not survive and it was the
                                                       pioneering work of the doctors, nurses and
                                                       technicians who established the dialysis
                                                       programme at Charing Cross Hospital (CXH) who
                                                       literally saved the lives of hundreds of patients.
                                                                                                                continue to provide this as we move forward.

                                                                                                                I consider myself extraordinarily lucky to have
                                                                                                                been in contact with all of these people and to
                                                                                                                have learnt so much from them all, however, the
                                                                                                                group of individuals who I have gained most from
                                                                                                                has been yourselves; the patients.

                                                                                                                Although I feel that the time I have to give to you
                                                                                                                all is never enough, I, like many of my colleagues,
                                                       It was Professor Hugh de Wardener who                    have learnt most from the courage, resilience and
30th Birthday!                                         established a clinical team here at CXH that was
                                                       literally world leading and Hugh became President
                                                                                                                the humour that you all show despite the awful
                                                                                                                difficulties that life on dialysis gives you, this
                                                       of the Renal Association and the International           humbles us doctors enormously. It was for that
                                                       Society of Nephrology. After Hugh’s retirement, the      reason that I take the role as president of the KPA
                                                       mantle of leadership was passed on to Malcolm            as such a great honour and responsibility.
                                                       Phillips who, with Peter Gower and John Curtis,
                                                       converted the treatment of renal failure patients        The KPA has worked tirelessly to advance the
                                                       from a procedure offered to a minority of potential      interests of patients with renal failure and my
                                                       patients to one that was offered to almost all           hope and expectation is that the newly formed
                                                       patients in need. Initially this was achieved            KPA will provide even more influence and power
                                                       through the development of a home dialysis               to you patients. I know that we are disappointed
                                                       service that was emulated by most other units in         that we are still waiting for a new dialysis unit and
                                                       the UK and we had over 100 patients dialysing at         god knows that I have seen more plans for this
Mrs Jean Scott (3rd Secretary of SESKPA), Alison       home in the South of England, from Cornwall to           than I care remember over the last 15 years,
Blezard (current Chair) and Mrs Marion Blezard         East Anglia. (I gather there was even a single           however, an amalgamated KPA should and will
(2nd Secretary)                                        Scottish patient!)                                       continue to fight this cause for you

Back in September, SESKPA celebrated its 30th          As dialysis services expanded it was Malcolm             So I am unapologetic about the contents of this
birthday with a reception party inviting many of its   Phillips who steered our services and developed          speech which is full of back patting and thank
past members to come and celebrate along with          them further, by instituting satellite dialysis          yous. I believe that we have made a difference to
the current ones. An imaginative selection of          services which brought the facilities closer to those    the lives of many people and this is something that
promotional material was launched, a raffle held       who needed them. This model of treatment is the          the Charing Cross Renal Services and the CXH KPA
and a beautiful celebratory cake was cut, to mark      model on which the current West London Service is        should be rightly proud of. I wish you all the best
the occasion. Thanks Alison for sending in the         based and again is the model utilised across the         of luck in the coming year."
wonderful photograph - it looks like you all had a     UK. This was undertaken with the support of a
great time!                                            distinguished business team and many of you will
                                                       remember names such as Don Keir and, of course,
Charing Cross KPA                                      Gill Barnes and John Markwick, who are still
                                                       involved in the management of renal services
                                                       today.

                                                       In case the men thought that they had the
                                                       monopoly of developing services for patients, I
                                                       need to record that through the 1980s and 90s
                                                       Edwina Brown established peritoneal dialysis as
                                                       a realistic and successful treatment for patients
                                                       with ESRF. I hope that patients who have been
                                                       cared for by her appreciate that she is a recognised
                                                       world leader in this service, both clinically and        Ray Downey MBE
                                                       academically.                                            Ray Downey, Chair of Sunderland KPA has been
Caption caption caption caption caption caption                                                                 recognised in the New Years Honours list this year
caption caption caption                                There are, however, a number of other groups that        with an MBE for charitable services to the
                                                       I need to recognise. The first are your nurses.          Sunderland KPA.
Mick Hill sent in news of the recent AGM held to       Dialysis nursing has changed considerably over the
mark the formation of the West London KPA -            years. It was always technical and always                "I never expected when I started doing charity
joining together the three previously separate         demanding, however, the pressure on our nursing          work that I would be honoured with the MBE,"
KPAs from Charing Cross, Hammersmith and St            staff is considerably greater now than it was in the     said Ray, who has himself been on dialysis since
Mary’s Hospitals. The meeting’s Presidential           1970s. The nurses have to put up with                    1992. "I'm very thankful to the people who put me
address was delivered by Dr Andrew Frankel and         considerable pressure from management and my             forward."
detailed some of the great achievements made by        rather grumpy moods, however, they work
some talented and dedicated individuals. Probably      tirelessly for our patients and I want to recognise      Ray said his proudest achievement was setting up
the most notable of these was that Charing Cross       their incredible dedication. The unit is currently led   the special dialysis unit at Haggerston Castle
pioneered haemodialysis in the UK, carrying out        by Roop Hurril and I have enormous respect for           Caravan Park in Northumberland, so kidney
the first dialysis session on 30 March 1964. The       him, as he juggles the pressures on him, he does         patients' families could have holidays together.
history behind this life saving step to treating       the job well. And CXH, however grotty the                Over the four years it was in operation, around 560
kidney failure is fascinating…                         infrastructure, can hold its head up when its            patients from across the UK dialysed at the centre.

                                                                                                                                                                        17
     AGM
                                                          to three Executive Committee members may be             stand for election as Chairperson until he or
                                                          individuals who are members of the Federation,          she has served for at least 12 months as a
                                                          but not members of any member Kidney Patients’          Trustee. No KPA shall have more than one
                                                          Association. Any such individual must have their        person who is a member of that KPA serving
                                                          nomination proposed or seconded by one of the           as an officer of the Executive Committee.
                                                          current Trustees. Any individual who is a member        Ballot papers shall be given to Full Members at
                                                          of a member KPA may stand for election to the           the annual general meeting and the counting
                                                          Executive Committee, subject to a maximum of            of the ballots will take place at such meeting.
                                                          two individuals from any individual KPA. All            The election of Trustees shall be carried by a
                                                          nominations must be proposed, seconded and              simple majority of the votes cast and in case of
     NOTICE is hereby given that the                      submitted in writing to the Federation to arrive no     equality of votes the Chairperson shall decide
     31st Annual General Meeting of                       later than 42 days before the date of the annual        between those candidates by lot, and proceed
     the National Kidney Federation                       general meeting.                                        as if the candidate on whom the lot falls had
                                                                                                                  received an additional vote. The Chairperson
     will be held on Saturday 27 March                    4 Either the proposer or seconder MUST be a             shall announce the results at the annual
     2010, at 1.30pm in the Governors’                      member of the nominee’s own KPA. No                   general meeting. Where there are no more
     Hall, St Thomas' Hospital, London.                     individual may propose or second more than            nominations than vacant posts the candidates
                                                            two nominees for election to the Executive            shall be declared elected at the annual general
     1 Full Member Associations may send                    Committee in any one year.                            meeting without the necessity of a vote.
       representatives.
                                                          5 Full and Associate Member Associations may          7 All nominations must be accompanied by a
     2 Associate Members, Affiliated Members and            propose candidates for election and may               brief statement supporting their candidature
       Friends Members may attend and may speak             submit propositions and items for the Agenda.         together with a signed ‘Charity Trustees
       on non-policy matters, but are not entitled to                                                             Eligibility form.”
       vote.                                              6 The Executive shall consist of not less than 11
                                                            and no more than 16 members elected by              8 The quorum at an AGM shall be 30% of Full
     3 If the official representative of any Full           representatives of Full Members of the                Member Associations’ representatives.
       Member Association is unable to attend, then a       Federation, including a maximum of 6 officers.
       substitute representative may attend and vote        All Trustees shall retire annually, but are         ALL NOMINATIONS MUST BE SUBMITTED IN
       on behalf of that Association: Written               eligible for re-election provided that no Trustee   WRITING to the Federation at the above address
       notification of the substitution to be given in      may serve for a period of more than seven           TO ARRIVE NO LATER THAN 12 FEBRUARY 2010
       writing prior to the meeting.                        consecutive years except in respect of existing
                                                            officers who wish to continue beyond the            The agenda will be circulated to each member
     The Council shall consist of one representative        seven years limit in order to complete a three      association representative no later than 1st March
     from each Full Member Association. At the AGM          year term of office to an elected position          2010. Full copies of the Memorandum and Articles
     the Council will elect the Executive Committee. Up     already held. No individual shall be eligible to    of Association are available upon request.




                                                          Advertisement




18
                                                                                                                     DIALYSIS CENTRE AND HOTEL ARCUS

   DONAL’S                                 TIME
>>>>>> continued from page 10                            about all aspects of their kidney disease and its
                                                         treatment. Renal Patient View signposts a number
As a blood group O donor is also compatible with         of high quality sites that explain issues of
a blood group B patient, the 2006 scheme allows,         transplantation in more detail. I would also
under certain circumstances, a group O donor             strongly encourage you and similar patients to
kidney to go to a group B patient so that they do        discuss, with your local kidney and transplant
not wait so long. Also, rare tissue types can now        teams, your individual options and concerns with
be considered matched with similar, more                 regard to home dialysis, potential living donors
common tissue types so that patients with rare           from non family members or previously excluded
tissue types should not wait as long. Since the          family members because of blood group or tissue
scheme was introduced the proportion of patients         typing compatibility, and some of the newer
on the list waiting over five years has dropped          strategies to increase the chance of                         Hotel Arcus Residence
from 17 to 8%. The average waiting time for              transplantation.
Asian patients in the most recent analysis had
fallen to 1511 days.                                     In summary, without knowing the details of your
                                                         case, your above average wait for a transplant is
It is important to remember that transplantation         probably a consequence of the biological
cannot occur without organ donation and a                characteristics that are used in organ allocation.
crucial aspect of improving access to                    The national scheme for kidney allocation is under
transplantation is to increase the number of organ       constant review and was revised in 2006 in order
donors. Following the publication of the Organs          to remove some of the apparent inequalities. In                 Advertisement
for Transplant Report in 2008 we are working hard        addition, considerable efforts are being made to
to increase the number of people signed up to the        increase the number of organ donors for the
Organ Donor Register. A publicity campaign was           benefit of all those awaiting a transplant. I hope
launched in November 2009 that has already               that in 2010 you will be able to tailor your dialysis
increased the number registered www.organ                to your individual needs and priorities and
donation.nhs.uk and the next phase of the                reconsider live donation, perhaps from ABO or
campaign will be targeted at ethnic minority             HLA ‘incompatible’ individuals or be fortunate
communities with the aim of increasing donation          enough to receive a call ‘out of the blue’ asking
from those groups.                                       you to come into the transplant centre for a non
                                                         heart beating donor kidney transplant. Early in
Renal Patient View, www.renalpatientview.org             2010 the campaign to increase donation will be
enables individual patients to track their status on     focused on Asian and black communities and if
the transplant list. NHS Blood and Transplant            successful, this initiative should help to improve
www.nhsbt.nhs.uk updates the status every day            your chance of an offer.
so it’s a good way for patients to keep in touch



Letters Page                                                                            Note from the Editor
                                                           Thanks for this thought provoking letter, Ray. We’d
                                                                be very interested to know your view on Ray’s
                                                                                                    suggestion!
DEAR EDITOR,
From all the surveys I have read, it would appear         DEAR EDITOR,
                                                          I have just read your article on home haemodialysis
                                                                                                                   Krystel and Bruce shine
that 90% of people are in favour of organ donation
but never get round to actually committing                and would like to offer readers of KL who are            through
themselves by contacting the NHS Organ Donor              considering this form of dialysis, a tip.                We received a really wonderful and moving letter
Register. Perhaps what is required is a more pro-                                                                  from David Wroe telling us about his son Bruce’s
active approach involving a "worthy pyramid"
scheme. This would involve all those on organ
                                                          In case of Electricity cuts                              battle with kidney failure, and of his daughter
                                                                                                                   Krystel’s insistence to donate a kidney to her
transplant lists, support groups, and other interested    or light failure                                         brother, despite her young age. David we, like you,
individuals and organisations.                            I've had one or two power-cuts on dialysis in the        think Krystel is amazing and we can understand why
                                                          two years I've been dialysing at home, but so far        you are so proud of your two children.
A pro-forma could be compiled outlining how to            these have occurred only during the day. Manual          Well done Krystel and good luck with your
register on line, by telephone, or by text. This          wash back is easy enough to perform in the daylight,     life Bruce!
information sheet could also contain a cut-off slip at    but yesterday much of my local area was plunged
the bottom which the prospective donor could fill in
and post to the appropriate body.
                                                          into a peaceful darkness - streetlights, shops,
                                                          everything. Fortunately I was not dialysing at the
                                                                                                                   Goodbye Friends
                                                                                                                   On a far less happy note the NKF has had to
                                                          time.
All those mentioned at the end of the first paragraph                                                              introduce a Policy concerning obituary notices
would be given five to ten copies of this letter which    But in case you are affected by a power cut I            printed in Kidney Life, limiting this to ‘past
they then pass to family, friends, and advocates.         recommend arranging for a safety/emergency light         Members of the NKF Executive’ or NKF staff only.
These, in their turn and having photocopied the           to be positioned within handy reach of your home
original (or applied to the relevant authority for        dialysis set-up. I use an Emergency LED light/torch      Over the past few months we have received
copies) could set about enrolling others. Such a          (mine was purchased from Machine Mart) which             several very moving letters letting us know of
project would have the advantage of person to             plugs into the mains to charge up and is then fully
person contact with the added bonus of positive                                                                    loved ones who are no longer with us, and to
                                                          usable in the event of a power failure.                  those of you who have sent these we hope you
encouragement and explanation from those who                                                  James Wharham
truly believe in this life saving undertaking.                                                                     will understand this NKF Policy and accept our
                                         Ray Summers                      Thanks for this very useful tip James!   heart felt condolences.

                                                                                                                                                                         19
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