Spring issue 2010
The magazine of the National Kidney Federation
paving the way to more successful
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
A sad farewell to NKFNEWS
WHO’S WHO AT THE NATIONAL
KIDNEY FEDERATION I was very sorry indeed to learn of the death
of Bob Smith following a short illness. Bob
was a long serving and faithful colleague
President: Frank Howarth
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
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National Kidney Federation
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Chief Executive Timothy Statham OBE
Tell the NKF
Assistant Office Manager
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
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
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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
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
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
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
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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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......
the NKF needs your help NOW.
A General Election is imminent, and
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.
patients that we enjoy the same level
It is essential for the welfare of kidney the parliamentary
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
PARLIAMENTARY party candidates are in your own
Either access the Conservative 2. Find out who the three main
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
PARTIES? or call their Campaign Office on:
This is important work that may well
have a bearing on the level of rena
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.
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
or call their Campaign Office on: or call their Campaign Office on:
020 7222 7999. 08705 900 200.
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
Charity Registration No. 265378 • Care Quality Commission No. 11492 www.communigate.co.uk/london/cxhdt
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 email@example.com
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
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!
. 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.
THINK HOME My dialysis machine is portable and
go anywhere with me; it
has just become
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
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.
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
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
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
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.
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
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
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.
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.
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
Please scroll down to non-advertisement page which follows
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
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
Front page (NHSBT) ‘Bulletin’ - issue 72.
To read article in full please go to:
‘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.
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
...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
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
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
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
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
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.
• 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.
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- firstname.lastname@example.org 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
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.
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.
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
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
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.
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.
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.
DIALYSIS CENTRE AND HOTEL ARCUS
>>>>>> 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
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
On a far less happy note the NKF has had to
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.
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