Kidney Life, Spring 2010 - National Kidney Federation

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…
Three Parliamentary survey forms
requiring action by YOU !!
page 5
W H A T ’ S
Page
3
4
5
6
7
8-9
I N
T H I S
RENAL
QUESTION TIME…
Donal O,Donoghue reponds again to
a topical renal issue
page 10
I S S U E :
Article
NKF New
Assessing the impact of insufficient home dialysis
Contacting your Parliamentary Candidates to ensure our future
Preparing young people for transition from paediatric to adult care
Peritoneal Dialysis at home
Pooled Donation - how can this help me?
Page
10
13
15
16
18
19
Article
Donal’s Question Time
Getting the end of life right
Noticeboard
Medical Matters
Notice of Annual General Meeting
Letters
Advertisement
82
WHO’S WHO
AT THE NATIONAL
KIDNEY FEDERATION
Officers
President:
Frank Howarth
Chairman:
Ray Mackey
Vice Chairman:
Marion Higgins
Secretary:
TBA
Treasurer:
David MacDonald
Executive committee
Michael Abbott
Kirit Modi
William Bradbury
Sandy Lines MBE
Bindu Chauhan
Peter MacDonald
Richard Cooke
Bob Price
Barbara Morris
Linda Pickering
Tracey Sinclair
Patrons
Baroness Cumberlege CBE DL
Prof Sir Netar Mallick DL FRCP
Baroness Masham of Ilton DL
The Rt Hon The Lord Norrie
Medical advisors
Mr Ali Bakran MBChB FRCS
Dr Alison Crombie BSc MSc PhD
Prof Terry Feest MRCP
Prof Alison MacLeod MRCP
Prof Sir Netar Mallick FL FRCP
Dr Richard Moore BSc MD FRCP MBA
Dr Rakesh Patel MBChB
Mr Hany Riad FRCS
Dr Andrew Stein MRCP
Dr David Taube FRCP
Prof Alan Watson FRCP (Ed) FRCPCH
Specialist advisors
Mrs J Auer CQSW
Dr Joanna Chambers MB FRCP FRCR
Ms Cathy Holman CQSW
Prof Phillip Dyer OBE Phd FRCPath SRCS
Contacts
Chief Executive
Timothy Statham OBE
Office Manager
Margaret Parkin
Assistant Office Manager
Neil Pankhurst
Office Administrator
Stephanie Allen
Accounts Administrator
Sue Edwards
Assistant Office Administrator Linda Fores
Helpline Manager
Jane Oldfield
Assistant Helpline Manager
Pauline Pinkos
Advocacy Officers
National & South:
Bob Dunn MBE
North Region:
Dennis Crane MBE
Midlands Region:
Denis Cawdron
Trust/Grants
George Finch
Kidney Life Magazine
Editor:
Deborah Duval
Assistant Editor:
Sue Lyon
Designers:
Walker Associates
Printers:
Multicopy Ltd
Web team
Webmaster:
Ken Petrie (Instabook)
Medical Advisors:
Dr Rob Higgins FRCP
Dr Charles Tomson BM B.CH D.M.
Dr Andrew Lewington
National Kidney Federation
Registered Office: The Point, Coach Road,
Shireoaks, Worksop, Nottinghamshire S81 8BW.
Tel: 01909 544999
Fax: 01909 481723
E-mail: [email protected]
Website: www.kidney.org.uk
National Kidney Patients Helpline: 0845 601 02 09 (local rate)
Charity No. 1106735
Company No. 5272349 Registered in England & Wales
Give as You Earn contributions No. CAF. GY511
Kidney Life is published by The National Kidney Federation,
The Point, Coach Road,
Shireoaks, Worksop, Nottinghamshire S81 8BW.
The views and opinions expressed by contributors are not
necessarily the view of The National Kidney Federation.
NKFNEWS
A sad farewell to
Bob Smith
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
who will be sadly missed. He joined the
NKF Executive Committee in 2002 and was
Co-Vice Chairman 2005/6. In 2007 he took
on the task of secretary to the Federation and was proposing
to continue as our company secretary, sadly this was not
possible.
We shall miss Bob's wry sense of humour and we extend
our sympathies to Rosemary, Bobs sister, at this time of
bereavement.
Frank Howarth, President, National Kidney Federation.
Please tick one of the below
Full name......................................................
I am:
Address......................................................... a patient
.....................................................................
carer
friend
..................................Postcode .....................
If you are a patient, please tell us
the name of your renal unit or
nearest KPA.
Tel.................................................................
...........................................
Amount donated
£..............................................
Date.........................................
The section below is optional - please
ignore if you do not want the NKF to reclaim tax.
Declaration
I am a UK taxpayer and want the
National Kidney Federation to reclaim the
tax on all donations I make on or after
the date of this declaration. My tax bill
this year will be more than this donation
Signed, sealed and delivered on
If you are a UK taxpayer, and complete
Date..........................................
the following Gift Aid Declaration, as well
Signature.................................................
as the form above, the NKF will be able
to reclaim the tax on all donations you
Note: Remember to notify us if you no longer pay an
amount of income tax or capital gains tax equal to the tax
make to the NKF
we reclaim on your donations (\ 28p for every £1 you give\)
Tell the NKF
NKF Policy
on Health Tourism
We’d like to offer humble apologies to
our friends in Ireland for omitting
reference to them in the NKF Policy on
Health Tourism printed in the Winter 2009
issue of Kidney Life (on page 3).
Thank you, Mark Murphy (CEO, Irish
Kidney Association) for pointing this
out… we’re genuinely very sorry!!
Become a Friend of the NKF
Whether you are a Kidney Patient yourself, a carer or
just a friend who would like to support the National
Kidney Federation in its work, please consider making
an annual donation to the NKF. Just send us your name
and address (or fill in this form) and post it to us
together with your donation to:
National Kidney Federation, The Point, Coach
Road, Shireoaks, Worksop, Notts S81 8BW
Telephone 01909 544999
Donations of £20 or above will entitle you to
receive 4 issues of Kidney Life Magazine.
All donations will be acknowledged. Join online and
Cheques should be made payable to pay by Credit or
Debit card’
National Kidney Federation
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
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
contributed to every survey listed. New surveys are listed regularly so checking the site regularly is the only way to make
sure you have contributed to them all. One voice is important and might be heard - but 1000s cannot be ignored! This is
how we maintain pressure on those who can make a difference to our treatment. The NKF will use the information YOU have
provided in the Survey Zone to help formulate policy and assist the pharmaceutical industry and Government plan the
future care of all kidney patients in the UK. So, to make your opinion count, make sure we have it!!!
How to contribute to Kidney Life
The NKF Helpline
If you have an interesting story to contribute to Kidney
Life there are many ways you can do this. You can
either contact us by emailing the NKF on
[email protected] making sure your email subject
line indicates it is for Kidney Life, or you can write a
letter and send it in to the NKF HQ. If you have any
ideas for Kidney Life and would like to speak to the
editor about them, please let us have your contact
details. Deborah will call you back to discuss them. If
you are sending in photographs, please make sure they
are sent as an attachment to email in jpeg format
(hard copy photos can also be used and of course will
be returned once used).
Deadline for Summer 2010 issue is 9 April 2010.
We’d love to hear from you!
The NKF Helpline provides information to patients,
Sponsorship the easy way
Raising money by sponsorship of the NKF is easy:Visit www.justgiving.com/KidneyLife or
www.justgiving.com/kidney-life and see how easy it
is to organise an event without even needing to collect
the money. If you need NKF merchandise to help you
visit www.kidney.org.uk/main/NKF_materials
carers, family, friends and medical professionals. Seek
advice, obtain literature, get help - all from the one
Helpline number (open for calls from 9.00 am to 5.00
pm, Monday to Friday): 0845
601 02 09
(charged local call rate, UK only) or
e-mail: [email protected]
Kidney Life is sponsored by:
Amgen
Astellas
Baxter Healthcare
Braun Avitum UK
Diaverum
Fresenius
Gambro
Diaverum
Genzyme
Hospira
Kimal
Novartis
Quanta Fluid Solutions
Roche
Shire
Syner-Med
Wyeth
Anyone with access to the Internet can find the latest
information from the NKF at www.kidney.org.uk
A black and white larger print or audio version of this issue is
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
number of late referrals for dialysis and transplants.
KIDNEY CARE
IMPROVEMENT
HAMPERED BY
INSUFFICIENT HOME
DIALYSIS,
WARN CHARITIES
By Moya Sarner
The NHS continues to provide insufficient home dialysis facilities, despite
overall improvements in kidney care, charities have warned.
The Department of Health published a report today on the progress
made in kidney care five years after the development of the national
service framework. Improvements cited by the DH include increased
capacity for dialysis and more satellite renal units.
There are not enough dialysis stations, staff and units to dialyse our
patients in a timely fashion National Clinical Director for Kidney Care
Donal O’Donoghue said........
“There is still a lot more work to be done and I hope to see progress in
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 to retain good health.”
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
and healthier and they live longer - and that means big financial savings
for the NHS,” he said.
Kidney Research UK chief executive Charles Kernahan agreed there
needed to be more choice of where patients can receive their treatment.
He said: “The key is having home dialysis available for people to choose,
because it doesn’t suit everybody, and needs will change as kidney
disease develops in patients.The important thing is that the DH and the
NHS have recognised the need, though there is still some way to go to
implement it throughout the country.”
To access a copy of the Half Term Report please go to
www.kidney.org.uk/campaigns/Renal-nsf/dh_109977.pdf
Holiday in the stunning Lake District and let Lakeland Dialysis
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KIDNEY CARE
IT’S IN YOUR HANDS
Does the quality of care for
kidney patients matter to you?
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
A General Election is imminent, and
NKF needs your help NOW.
who
175 members of Parliament and Lords
During the last parliament there were
of
ber
num
a
in
this
did
They
nt.
ame
in Parli
supported the needs of kidney patients
is,
and
was,
amentary Kidney Group, which
ways, including joining the All Party Parli
a very powerful voice, and very helpful.
of
patients that we enjoy the same level
It is essential for the welfare of kidney
ntary
ame
parli
the
means approaching
support in the new Parliament - that
day.
ng
polli
re
candidates now, befo
HOW DO I FIND
OUT WHO MY
PARLIAMENTARY
CANDIDATES ARE
FOR THE MAIN
THREE POLITICAL
PARTIES?
THE CONSERVATIVE PARTY
Either access the Conservative
Party website using the following
link and enter your post code in
the space provided at the bottom
left of the page:
www.conservatives.com/
where_you_live
or call their Campaign Office on:
020 7222 9000.
THE LABOUR PARTY
LIBERAL DEMOCRATS
Either access the Liberal Democrats’
website using the following link and
enter your postcode:
www.libdems.org.uk/parliamentary_
candidates.aspx
or call their Campaign Office on:
020 7222 7999.
Either access the Labour Party
website using the following link
and enter your postcode in the
space provided down the right
hand panel on the home page:
www.labour.org.uk
or call their Campaign Office on:
08705 900 200.
The NKF asks you to do four things:each
in the top right hand corner of
1. Write your name and address
e)
azin
mag
Life
survey form (enclosed in this Kidney
party candidates are in your own
2. Find out who the three main
constituency
complete one of the survey forms,
3. Ask those three candidates to each
and return it to you
ey forms.
4. Send the NKF the completed surv
l
have a bearing on the level of rena
This is important work that may well
nt
patie
our
that
life
of
ity
qual
the
and
s
year
replacement therapy over the coming
members are able to enjoy.
er
Please help - don’t put these in a draw
The NKF urgently needs your support and
ST. ANNE’S
St Anne’s provides self catering holiday accommodation for renal
patients. Dialysis is undertaken in a purpose built dialysis unit situated
in the garden of St Anne’s and supervised by a renal trained nurse.
Charity Registration No. 265378 • Care Quality Commission No. 11492
help with this task.
nal Chairman
Kind regards, Ray Mackey, NKF Natio
CHARING CROSS HOLIDAY DIALYSIS TRUST
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,
full of charm and character with its numerous tea
shops and pubs. Non-residents are welcome to
use the dialysis and garden facilities.
and forget them.
Open
all year round why not take a
Winter or early Spring
break - or even a
long weekend
break
For further information contact:
St Anne’s, 34 Havant Road, Emsworth, Hants PO10 7JG
Telephone: Monday-Friday 10am-3pm: 01243 372807
leave a message and we will return your call
e-mail: [email protected]
www.communigate.co.uk/london/cxhdt
5
.
..
e
l
p
o
e
P
g
n
Preparing You
...FOR TRANSITION FROM PAEDIATRIC TO ADULT
KIDNEY UNIT USING RESIDENTIAL EXPERIENCE
by Alan R Watson, Consultant Paediatric Nephrologist,
Donna Hilton, Senior Youth Worker and
Dorro Hackett, Youth Development Worker.
Children’s Renal & Urology Unit, Nottingham University Hospitals NHS Trust
It has long been part of our strategy of support for
families of children with chronic kidney disease (CKD)
to offer residential holidays away from their families
and run by unit staff. In the development of our
support for young people in transition from paediatric
to adult kidney units, we developed transition
residentials for young people 16 – 18 years of age.
The residentials have been held in either Youth
Hostels or at a local family holiday village over a
period of 2-4 days.
utilising peer support and sharing experiences. A total of 32
young people (20 with transplants, 7 on dialysis, 5 with CKD)
attended three residentials accompanied by an average of four
staff including youth worker, dietician, specialist paediatric nurses
and volunteers. The adult unit has also been represented by
specialist nurse and/or social worker.
The content of the group sessions each day was developed
following feedback from the young people and included subjects
such as transition issues, developing peer support, team work,
health and awareness, sexual health and alcohol, diet and cooking
practice, and developing life skills. The young people also planned
and participated in the production of a DVD on transition issues
‘Moving On’ - available from NUH Youth Service, e-mail
[email protected]
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 selfmanagement 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 [email protected]
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.
THINK HOME
DIALYSIS THINK PD!
By Janet Wild, Clinical Education Manager,
Baxter Healthcare
Yvonne’s story
can
My dialysis machine is portable and
me
beco
just
has
go anywhere with me; it
still
can
I
ns
mea
and
age
part of my lugg
My
enjoy doing what I love to do.
a
from
back
e
husband and I have just com
l
trave
to
due
are
we
and
week in Scotland
I
All
.
time
s
week
few
a
in
n
Devo
down to
our
in
up
need to do is set my equipment
t
room. One year we even wen
in
ing
sleep
up
d
ende
I
and
caravanning
just
the lounge with my equipment! You
ngs.
undi
have to adapt to your surro
Peritoneal Dialysis (PD) has been the
treatment of choice for home dialysis
patients since it was developed in the early
1980s, with over 100,000 people currently
using it worldwide including 4,500 in the UK.
Pamela’s story
My husband and I have just bought
our very own Arun lifeboat and we
enjoy running trips out of Portishead.
We are able to perform wedding
blessings,
corporate
events,
teambuilding days aboard - it certainly
keeps me very busy! The boat business
has been a dream of ours for a while
and with me being on home dialysis
instead of travelling to hospital three
times a week, it means it is a dream
we have been able to make come true.
I have even stayed on the boat
overnight. I simply plug my machine
into the mains and that’s it.
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
accumulates in the blood of people with kidney
failure. Dialysis fluid is instilled into the
abdominal cavity via a permanent small plastic
tube that exits in the body just below the belly
button. The dialysis fluid is exchanged regularly,
removing the waste products and water each
time the used dialysis fluid is replaced. Unlike
haemodialysis, which is usually done three times
a week, PD provides continuous dialysis, thus
preventing excessive build-up of fluid and
wastes. Patients often say this makes them feel
more stable because they don’t experience wide
fluctuations in fluid balance or biochemical
status.
PD is the most portable form of dialysis. The
equipment can be carried in the boot of a car
enabling short trips away to be spontaneous.
For longer journeys, or those that are further
afield, the supplies can be delivered to most
parts of the world. This allows patients to travel
for work, family or on holiday with a little
advance planning.
CAPD (Continuous Ambulatory Peritoneal
Dialysis) patients perform on average four
manual exchanges of the dialysis fluid a day.
Each exchange takes 30 – 45 minutes and can
be done almost anywhere there is a clean and
convenient place.
Yvonne Warhurst
A large proportion of patients prefer to do their
dialysis overnight whilst they are asleep. This
automated form of PD (APD) uses a machine
that is programmed with the patients’ specific
prescription. Once the patient has connected
themselves to the machine, it exchanges the
dialysis fluid repeatedly, allowing the patient to
sleep. APD machines are unobtrusive and
portable, meaning patients can travel as easily
as those on CAPD.
Support for home PD patients is extensive.
Thorough training is given to patients and close
relatives in all aspects of the treatment. Patients
can receive their training in their own home, in
the hospital or at a specialist training centre
from specially qualified nurses. Most people can
learn the techniques within a week; however
training is always tailored to the individual and
so varies, depending on the circumstances.
Once at home, help and support is always at
hand. The specialist PD nurses are only a phone
call away to give advice and information. The
home dialysis nurses also visit patients at home
regularly to perform simple checks, provide
support, offer encouragement and practical
guidance.
Pamela Iannetta
For patients who aren’t able to do all of the
dialysis themselves, assisted APD is a particular
benefit. A trained healthcare assistant visits the
patient’s home once a day to set up the
machine. All the patient or their carer has to do
is connect to the machine at bedtime. Assisted
APD is available to patients who have been on
PD for sometime and may be finding it more
difficult to cope. It’s also of benefit to people
who have physical limitations, such as arthritis
or frailty, making some aspects of the dialysis a
burden.
Others use assisted APD as an extra support
when they first go home on dialysis, until they
gain confidence to do the treatment unaided.
Home dialysis is a key priority for NHS Kidney
Care and the Department of Health. The vast
majority of people with kidney failure are
suitable for dialysis at home with PD. It’s an
effective and flexible form of dialysis that has
been used widely and successfully by many
kidney patients for decades.
7
Pooled (\ or ‘paired’\) Donation
When Brian and Linda Gracey wrote a letter to
Kidney Life asking us to help them raise the profile
of pooled (sometimes referred to as ‘paired’\)
donation by printing their letter on our letters’
page, it was clear to us that, as the success of the
whole concept of pooled donation depends on as
many people as possible registering their interest
in it, it required more of a focused investigation. So
we took a look at Brian, who is waiting for a
kidney transplant and Brian’s wife Linda who
wishes to donate a kidney, along with Paul who
has now received a successful kidney transplant as
a result of joining the scheme with his mother-inlaw who wanted to donate a kidney, and Carol,
who in an unrelated ‘pool’, became a living donor
so that her husband might receive a kidney
transplant from it.
And outlining details of the scheme and how it
functions, Rachel Johnson of National Health
Service Blood and Transplant (NHSBT) explains
what goes on behind the scenes and how pooled
donation might benefit you if you are waiting for a
kidney transplant, or are someone wishing to
donate one. If this scheme is something you would
like to know more about, speak to your renal unit’s
transplant coordinator and he or she will talk to
you about your suitability.
My wait in the Pool
By Brain Gracey
My name is Brian Gracey and I am 56 years old. I
retired from my full time job two years ago but still
work two days a week. My kidney problems began
32 years ago in 1977. I was fortunate to be
diagnosed at an early stage in my renal failure and
did not require a transplant until 1988 when I
received a kidney from my mother. For 19 years I
lived a normal, fulfilling life in the City of London,
and was able to do pretty much everything I
wanted to do. But in 2007 my health started to
deteriorate and twelve months later my kidney
failed and I started haemodialysis. I had never
experienced dialysis before. It was a real eye
opener for me. I was carrying so much fluid it was
difficult to determine my dry weight, my blood
pressure was all over the place and I suffered
painful cramps. It was difficult to come to terms
with. The freedom that I had become so
accustomed to disappeared overnight.
So what options did I have? At first I looked to my
family in the hope that one might become a
suitable and willing living donor. I have two
brothers, both of whom are fit and well, two sons
who are also fit and well, and a loving wife who
has always promised that she would consider
donating if necessary. All these options we
explored but for one reason or another are now
not viable. We then learnt of the Pooled Kidney
Donation Scheme.
My wife and I have recently joined this scheme and
our first matching run was in July 2009. Although
there were no matches for us at that time we were
astonished to learn that so few couples are
registered on the scheme. Despite this, a high
number of matches are regularly found, and
obviously more would be found if the scope of the
scheme was broadened. We asked ourselves why
the number of couples registered is so small given
that there are over 7000 patients waiting for a
kidney transplant? Is it ignorance, fear, or
something else? Although we do not know, we
suspect it is the former.
Either way, the Pooled Kidney Donation Scheme
presents a wonderful opportunity for new life but
it needs more couples to participate. The more
people who participate in the scheme, the greater
the chances are for a match and therefore for a
kidney transplant to take place. For every couple
that joins, the chance for at least two patients to
receive a new kidney is realised.
If you are close to a kidney patient I would like to
ask you to please consider joining this amazing
scheme. By doing so, you will be making a positive
step towards enabling your partner, mother, father,
son or daughter to lead a normal life again, free
from dialysis.
Thank you
Rachel Johnson (NHSBT) explains how the
scheme works
The National Scheme
for Paired Living
Kidney Donation
Blood group or tissue type incompatibilities
between a potential donor and their intended
recipient mean that many potential living donor
kidney transplants are difficult if not impossible.
From September 2006, the Human Tissue Act
enabled paired donation to commence in the UK.
A national scheme was established whereby
incompatible donor-recipient pairs can exchange
kidneys so that recipients can receive alternative
compatible living donor organs. Exchanges are
identified between two or three incompatible pairs
(see Figure 1).
Linda and Brian
8
Figure 1 Two and three-way exchanges
All transplant centres in the UK have registered
pairs for the scheme, which is managed by NHS
Blood and Transplant at its Bristol base for Organ
Donation and Transplantation. Pairs must be fully
worked up and ready to proceed with a transplant
and every three months a computer program is run
to identify and prioritise possible paired or pooled
exchanges. Transplant centres are then notified of
the results so that tests can be carried out to
confirm compatibility between the matched
donors and recipients. Pairs must also be seen by
an independent assessor after which approval for
the transplant must be gained from the Human
Tissue Authority.
When the scheme started there were
approximately only 10 pairs registered but this has
steadily increased to over 140 pairs in the October
2009 matching run. This means that there is
greater potential to find matches for transplant,
although this is limited somewhat by the generally
high levels of sensitisation in patients registered
and the availability of recipients of certain blood
groups.
Since the scheme started, over 300 pairs have
been registered, of which about 35% have been
identified for paired (or pooled) donor transplant.
Unfortunately, over 50% of the identified
transplants have not proceeded and this is
typically because of late identification/notification
of alternative transplants and tests demonstrating
incompatibility that was not anticipated. After
identification of a possible paired/pooled
transplant through a matching run, patients will in
future be suspended immediately from the
deceased donor transplant list so that the
paired/pooled donor transplants have the best
possible chance of proceeding. It is important that
patients registered for the scheme are fully
committed to it, as transplants not proceeding
impact on all donors and recipients in the
exchange group and result in delayed or missed
opportunities for transplant.
On a more positive note, by the end of 2009, 44
patients had successfully received a transplant
through the scheme, mostly through two-way
exchanges, but there were two three-way
exchanges in the last two months of 2009. Many
other registered pairs have left the scheme as a
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
donor transplants are planned in the first few
weeks of 2010 and over 150 pairs will be included
in the January matching run in which further
matches will be identified.
When you love
someone
By Carol O’Grady
Once the scheme was explained, my initial
question of why would someone do this was
replaced by the realisation that four people were
directly benefitting from the process and many
other indirect family and friends would see
someone they cared for return to a more normal
life.
On the day of transplant, operations are carried
out simultaneously in the two or three hospitals
involved.
The kidneys are removed and
transported quickly to the recipient’s hospital
where they are transplanted, typically within five
hours.
There were 924 living donor kidney transplants in
the UK in 2008 and 10 of these (1%) were paired
donor transplants. In 2009 there were 948 living
donor transplants and 30 (3.2%) were as a result
of the paired/pooled donation scheme.
In order to increase the potential of paired
donation, other countries, such as the US and the
Netherlands, have implemented what is known as
domino (or chain) paired donation. This involves
an altruistic living donor (someone who wants to
donate a kidney anonymously to a stranger)
whose kidney is typically allocated to the most
appropriate recipient on the deceased donor
transplant list. However, by donating their kidney
into the paired donation pool, one or more paired
donations can be triggered, involving a donation
back to the deceased donor list. This approach has
been agreed in the UK and will be implemented
later this year (see Figure 2). The only caveat is that
if a high priority patient on the deceased donor list
is identified, then that transplant will still proceed,
although this is only likely to affect 8% of altruistic
donor kidneys.
This change will mean a greater chance of
transplant for the many very difficult to match
patients on the paired donation list, particularly as
those having been through most unsuccessful runs
will be prioritised.
Anyone interested in finding out more about the
paired/pooled donation scheme can see the
NHSBT website www.organdonation.nhs.uk/
ukt/about_transplants/organ_allocation/kidn
ey_(renal)/living_donation/paired_pooled_do
nation.jsp and should contact their local
transplant coordinator about how to join.
Sean and Carol
When you truly love someone there’s nothing you
won’t do for them. Donating a kidney was a small
price to pay in exchange for my husband’s life. In
my thoughts I gave my kidney to my husband
but in the back of my mind I knew I was saving
two peoples lives; not only was I giving my
husband a chance of a normal life but I was also
giving life to another person, who like my
husband, would have a chance of a better quality
of life. That is a fantastic feeling.
In the back of my mind was the worry that "what
if it doesn’t work?” but that’s the risk I knew I was
willing to take. I didn’t want to spend the rest of
my life wondering "what if". After the operation I
suppose I did feel a little lost. I felt like there was
no need for me anymore and my emotions where
all over the place. There was a little bit of
discomfort immediately afterwards, but I knew
that was temporary. You just have to take one day
at a time - I had, and still have fantastic support
from my family and from the team at Portsmouth
Hospital who were great - I couldn't have asked
for a better team of people to look after me. The
day after the operations my husband was up and
about. The difference in his skin colour and eyes
was so noticeable and just seeing him laughing
and smiling was the best feeling ever. I knew I had
made the right decision. Also, seeing him feeling
so well made me realise just how ill he had been.
He has just come alive again and that’s what I set
out to achieve for him and our family. I have no
regrets at all and if I could do it again I would.
My mother-in-law
By Paul Hinkins
and me
After my first kidney transplant had begun to fail
my mother-in-law, Margaret, decided to put
herself forward as a possible donor. This was yet
another humbling experience as my wife had been
my first donor - I was surprised at how easy the
decision seems to have been in both cases. I was
not used to this kind of self sacrifice, for my
benefit.
Figure 2 Domino (or chain) paired donation
hat and started to talk about the pooled or paired
donor scheme. Yet another lifeline for me was
appearing. I do not mind admitting at this point,
life on dialysis was something to dread and to this
day my feelings remain.
Tests were carried out in the normal way for live
donation, but as time went on it became clear that
a direct donation was not going to be possible. But
as usual, in my experience, Lisa Burnap and the
team at Guy’s pulled yet another rabbit out of the
Further tests including a plasma swap were
performed before the first compatibility run, which
takes place every three months. An anxious time
ensued before the results were known, and on that
initial run they were negative. A desperate feeling
was felt by all including people at Guy’s. It was a
difficult time for me being in between jobs and
having to postpone dialysis until settled in a new
role. The second run, approximately three months
later, again proved negative. This was again a
massive let down as I knew my well being was
deteriorating and dialysis loomed. The positive
side at this point was that I had joined a company
(Neopost Ltd) that, I was to find out in the near
future, was very understanding of my plight and
accommodated all the necessary visits to hospital
without question.
Paul and his wife, Sally Anne
I postponed dialysis as long as I could, against
medical advice for a number of reasons and
subsequently suffered healthwise: I needed to
secure a method of support for my family. In
January the news we had all be waiting for came,
a pooled donor had been found! The relief, and
dare I say it, the joy was incredible for all.
The time for dialysis came during February and
was fraught with further drama - a story for
another time! But the knowledge that a transplant
was coming was sustenance enough to get me
through.
My transplant took place on April 14 and for three
months was perfect - a bout of rejection has since
been dealt with and the knife edge that I walk on,
between rejection and BK virus is being controlled
well by the consultants at Guy’s.
The ‘pooled donor’ scheme is a great
innovation for kidney patients, but there are
still many decisions for the patient to make to
ensure that his/her family can cope and see
the light at the end of the tunnel in the same
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
that patients are put onto the national transplant
list within six months of their anticipated dialysis
start date.
"I am a fifty year old man of Indian origin
and have been on dialysis at the local
hospital for five years. I am doing well
but would like to have more control over
my lifestyle. I am on the transplant
list. My close family members have
offered their kidney to me but none has
been suitable because of health
reasons related to the potential donors. I
have been told that my chances of
getting a suitable transplant are very low
because of my ethnic background. I
have heard that there has been a huge
increase in the registration for kidney
donors over the last few months.
However, I am not sure how this will
affect my chances. I would be most
grateful for your advice."
Thank you for this interesting question that raises
a number of important issues. I am pleased to
learn that you are doing well but also fully
appreciate the restrictions that hospital based
haemodialysis places on such things as your diet
and fluid intake, the ability to tailor the dialysis
prescription to your own individual needs and of
course flexibility for travel, work and family
pursuits.
Home dialysis can give you far more control over
the management of your kidney problems and
dialysis regime than is possible in a hospital
setting. The effects of transferring from hospital to
home dialysis on lifestyle options, feelings of
wellbeing and objective measures of kidney health
can be dramatic. The patient stories speak for
themselves. I see that you will have started dialysis
in 2004 or 2005, around the time the National
Service Framework for Renal Services was
published. Standard 2 of the Framework gave
individuals approaching end stage renal failure the
right to receive timely preparation for renal
replacement therapy so the complications and
progression of their disease are minimised and
their choice of clinically appropriate treatment
10
8
There are two biological barriers to successful
organ transplantation. Firstly, as is the case for
blood transfusion, the donor must be ABO blood
group compatible with the recipient. Waiting time
reflects the proportion of patients and donors with
each blood group. About half of the patients on the
national kidney transplant waiting list are blood
group O. We know that blood group O patients
wait slightly longer for a transplant than group A or
AB patients but not as long as group B patients.
Approximately 15% of patients on the list but only
10% of donors are blood group B so those patients
wait the longest.
Secondly, it is essential to be sure that the recipient
does not have antibodies directed against the
donor’s HLA antigens (tissue type). If these
antibodies were present at the time of transplant
they would cause immediate and untreatable
rejection. Someone may produce antibodies to HLA
antigens if their immune cells have been exposed
to another person’s tissue type that is different
from their own. That can happen during pregnancy
because the baby will inherit some of dad’s tissue
type, following blood transfusion and previous
transplantation. It will be easier to find a donor for
a patient with no antibodies, than for someone
with antibodies and so if you have antibodies to
HLA then you will wait longer for a transplant.
Having ensured that a recipient has no ABO or HLA
antibodies directed against the donor, the next
stage of the national allocation process is to
minimise the HLA (tissue type) mismatches
between donor and recipient. Although HLA
mismatching does not prevent successful
transplantation, it is well established that HLA
mismatched transplants are more likely to fail in
the long term than those that are matched.
A recent study of the patients awaiting a kidney
transplant in the UK between 1998 and 2005
demonstrated an imbalance between different
ethnic groups in relation to their representation on
the kidney transplant list, in the donor population
and in the population of kidney transplant
recipients. The data showed that 92% of the UK
population was white, as was 77% of the kidney
transplant list, 97% of the donor population and
88% of the transplants. In contrast, 6% of the UK
population was Asian or black whereas they
comprised 13% of the transplant list; this reflects
the increased incidence of renal disease in these
ethnic groups. 2% of the organ donors and 12% of
the transplants were Asian or black.
As mentioned above, waiting time for a transplant
is influenced by ABO blood group. The average
waiting time for a transplant for blood group O, A,
B and AB recipients was 864, 569, 1360, 528 days
respectively. Blood group B patients therefore wait
by far the longest for a compatible donor. Only
10% of white patients compared with 24% of
black patients and 38% of Asian patients are blood
group B.
As a consequence of genetic variability between
individuals, there are many different tissue types.
Some are more common than others and in
addition there is variation between ethnic groups
as to the most frequently occurring tissue types.
This means that patients with rarer tissue types can
wait longer for a matched donor and this is more
likely to be the case when donors are
predominantly from one ethnic group and the
patient is from another.
Therefore the two biological factors, blood group
and tissue type, underlie the longer wait for a
transplant experienced by Asian as compared with
white patients. In the study described above, Asian
patients waited on average 1849 days whereas the
average wait for white patients was 1133 days.
In 2003 a Task Force was set up to review the 1998
National Kidney Allocation Scheme. One aim was
to help patients who had waited a very long time
to receive transplants by giving them greater
priority. Another aim was to resolve some of the
apparent inequalities in access to transplantation
resulting from biological differences whilst
maintaining good transplant survival. A revised
National Kidney Allocation Scheme was introduced
in April 2006. The scheme prioritises patients with
ideal tissue matches (000 HLA mismatches) and
then assigns points to patients based on the level
of tissue match between donor and recipient, the
length of time spent waiting for a transplant, age
of the recipient (with a progressive reduction in
points given after the age of thirty) and location
points such that patients geographically close to
the retrieval centre receive more points. The
patients with the highest number of points for a
particular pair of kidneys are offered these kidneys,
no matter where in the UK they receive their
treatment. There is careful monitoring to ensure
that the scheme fulfils the objectives of improving
equity of access to renal transplantation.
>>>>>> continued on page 19
Please scroll down to non-advertisement page which follows
Advertisements
2009 Transplant and
Waiting List statistics
Number of Kidney Transplant carried out in the UK in 2009
Kidney
Kidney/Pancreas
Total
Deceased
Living
1439
949
159
0
1598
949
TOTAL
2388
159
2547
Number of patients (active) on transplant waiting list in the
UK at end of 2009
Waiting for
Number*
Kidney
Pancreas
Kidney/pancreas
6937
49
286
*NB - these figures do not include those patients who would benefit
from a transplant but, for whatever reason, have not been placed on the
transplant waiting list.
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
One way of helping the NKF is to include a legacy to the charity in your will. More than two
thirds of adults die without a valid will, which results in their estates being allocated according
to the law, instead of according to their wishes.
Amount to be given...........................................................................
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
available in your local library.
Signed................................................................................................
The Law Society has a website at www.solicitors-online.com and you can get more information
on wills on www.make-a-will.org.uk .The NKF Helpline on
0845 601 02 09 can also give you advice on how to include the NKF in your will.
12
Name of Giver ........................ ..........................................................
I wish to make a bequest to the NKF as shown below.
Date...................................................................................................
The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire S81
8BW Charity Number 1106735
Please send or hand this coupon to your solicitor together with
any specific instructions in order that your wishes can be
incorporated into your will. Many Thanks - NKF
...So said one of the
presenters at a recent
meeting held in London to
discuss end of life facilities
for kidney patients. Barry
Noon attended on behalf of
Kidney Life.
“There is
a small
window...... to get
the end
of life
care right”
In an audience of about 200, drawn
mainly but not exclusively from the palliative
care field, sat one lonely patient! Speakers, who
were a mixture of experts in kidney and
palliative care, discussed decision making in
end-stage kidney disease, and issues such as
quality of life on dialysis and conservative
kidney management.
It was clear that there has been a great deal of
research in palliative care for cancer and other
illnesses - but not so much for kidney care.
Indeed, until the publication earlier this year of
a document called End of Life Care in Advanced
Kidney Disease, there has been precious little
about the specific needs of patients in kidney
failure. It’s not something we all like to talk
about.
In the old days - when I began treatment - it
was rather regarded that you had to ‘serve your
time’ on dialysis before you would be
considered for transplantation. Not, thank
goodness, anymore. These days many people
come to transplantation as the first choice and
dialysis is sometimes regarded as the ‘holding
area‘ before transplantation.
There are also more older people with other
diseases going on to dialysis, and there are
people who are waiting for their turn to come
up to receive their first, second or, in some cases
third, transplant. This means that many people
are growing old on dialysis - for them it is a way
of life with a finite end. And there are those
who have made a decision not to go back on to
dialysis - for whatever reason. All these patients
are to some extent in the line of fire for end of
life care.
But what can they, and we, expect in the final
months/weeks/days/hours? Can they expect to
make a ‘good death’? Certainly everyone would
hope to do so. But this raises an important
question:
Is your unit geared up to cope?
End of life treatment involves a level of care
that is different from the current hospitalised
option. It requires a lot more support
both for the patient and the family
and friends of the patient. Patients,
for example, need greater care in
terms of getting analgesia when they
need it (without having to wait until
it’s convenient for the single nurse on
duty) and jolly good symptom
management.
This seems to come as a bit of a
surprise to some clinicians/doctors (who
unfortunately weren’t, apparently, among the
delegates in London).
The message from the meeting is that end of
life is something that all kidney patients need
to think about, to plan for and come to a
consensus with their families well before the
eventual need arises.
It’s a bit like making a will: no one really likes to
think about it but it’s definitely a job that needs
to be done. Preferably sooner rather than later.
Barry Noon was diagnosed with kidney failure
in 1969 and began home dialysis in 1971. He
received a deceased-donor transplant in 1984.
(He is waiting for a long service medal to be
presented to him by Guy’s Hospital!\)
To download a copy of End of Life Care in
Advanced Kidney Disease, go to www.endof
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.
K.C
Holiday
1995
Dialysis
Centre (Bournemouth)
Established
FRIENDLY FAMILY RUN UNIT
100 YARDS
SITUATED ABOUT
FROM THE BEAUTIFUL SANDY
BEACHES OF SOUTHBOURNE.
BOURNEMOUTH TOWN AND
ITS FAMOUS PIER ARE APPROXIMATELY TWO MILES AWAY.
• Parking available and has wheelchair access
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.
One further ambition was to be able to return to swimming, something I did daily prior to
the commencement of dialysis. With a supply of waterproof dressings supplied by the Renal
Unit I am now swimming three days per week, which has given me a tremendous boost.
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
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
Advertisement
• Arrangements made with local hotels situated within
a few minutes walk of the unit, to offer a discount on
accommodation
• First-line medical support available
• The unit is staffed by well-trained nurses and the
Director, having over 20 years experience in this area
of care, ensures a warm and friendly atmosphere is
maintained at all times.
35 Southwood Avenue, Southbourne,
Bournemouth, Dorset BH6 3QB
Tel/Fax: 01202 422311
14
To anyone facing the daunting thought of impending dialysis do not be afraid like I was.
There will always be excellent support from the team at the Renal Unit. I hope also you will
be as fortunate as myself and have good support at home too. I receive a great deal of
encouragement to make the most of every day and do every thing I can to improve our
quality of life. My general health has also improved 100%.
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
been very helpful in giving me the name and telephone number for a member of staff who
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.
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
prescribed. It’s important for patients to challenge the prescriber or
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
the box or packing have changed.”
To read this warning in full please go to
renaltsar.blogspot.com/2009/12/bedtime-reading-drug-safetyupdate.html
World Kidney Day 2010
NKF United don’t let a flurry of snow
stand in the way of a practice session!
NKF United is keen to play charity matches in aid of YOUR KPA or the
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
your team up for a challenge?….to arrange a fixture write to
[email protected] or visit its website at
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!
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
This is the last chance we have to remind you about WKD and how
important this annual ‘day’ is in terms of highlighting the plight of
kidney patients all over the World. WKD this year is 11 March, and
we would really love to receive as many photos and WKD stories
as possible for the next issue of Kidney Life. Please email them in
to NKF HQ (see page 3 for contact details) and they may well appear
on the front cover of the Summer 2010 issue of Kidney Life!!
Renal Radio is launched
Renal Radio is an excellent worldwide Internet broadcasting service You
can access the live music and chat shows by going to the Renal Radio
Home page at www.renalradio.com/index.php then selecting the
‘entertainment’ option along the top panel and then the ‘on air’ option
from there. We do have a link from the NKF website but this will not take
you directly to the ‘on air’ broadcast. Give it a go and let us know what
you think!
“Renal Radio seeks to educate, inspire and entertain through content that
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
www.renalradio.com/forwards.php enlightening interviews as well as
informative podcasts for you to select at your leisure.”
(taken from the Renal Radio Home page)
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
(Cymdeithas Cleifion Arennau Cymru). You will find a very warm welcome
into the fold and many fellow patients and carers who share your
experiences. They are an incredibly welcoming association and would
love to say hello to YOU….You will always find useful information,
support and a friend!
Call 029 2074 2735 or go to www.wkpa.org.uk
British Transplant Games 2010
Bath 19-22 August
Can you run, jump, throw a ball, row, shoot an arrow, swim or play any
game involving the use of a net (speaking as a true sportswoman
here….\)? Then it is not too late to get your unit’s team entered into the
2010 British Transplant Games to be held this year in Bath. The organisers
are TSUK and can be found at www.transplantsport.org.uk where you
will find details of all events and entrance criteria. We LOVE the
stories and photographs you send in from the games, so
please let us all share in your glory!
You can pay by card!
Credit and Debit cards can now be accepted on the NKF
website www.kidney.org.co.uk for all NKF products and
services.
15
In Europe, the survival of dialysis and
kidney transplant patients continues
to improve. Other good news is a
slowing of the annual rise in the
number of new patients needing
renal replacement therapy (RRT;
dialysis or transplant) for established
kidney failure, and stabilisation of the
rate in some age groups. These
conclusions are based on analysis of
data from 1997 to 2006 from 19
European national or regional renal
registries, including the UK Renal
Registry. The authors report that the
overall incidence rate of RRT
increased from 109.9 per million
population (pmp) in 1997 to 119.7
pmp in 2000: an average annual
percentage change of 2.9%.
Subsequently, the rate of increase
was much lower, reaching 125.4 pmp
in 2006. This change was largely due
to stabilisation in the incidence rates
of RRT for women aged 65-74 years,
men aged 75-84 years and patients
receiving RRT for kidney failure due
to high blood pressure or renal
vascular disease. Between 1997-2001
and 2002-2006, the risk of death fell
for all types of RRT, with the most
substantial improvement seen in
patients starting peritoneal dialysis
and in kidney transplant recipients.
Nephrology Dialysis and
Transplantation 2009; 24: 3557-66
Secondary
hyperparathyroidism
(SHPT) is common in people with
chronic kidney disease. Since SHPT is
progressive, patients often need
long-term treatment to control
parathyroid hormone (PTH) and the
balance of calcium and phosphorus
in the blood. Based on follow-up of
dialysis patients included in clinical
trials of cinacalcet, treatment with
the drug effectively maintains
reductions in levels of PTH, calcium
and phosphorus for up to six years.
Clinical Journal of the American
Society of Nephrology 2009; 4:
1465-76
Exercise training improves aerobic
capacity and improves heart rate and
left-ventricular ejection fraction (both
indicators of heart health) in
haemodialysis patients. The study
included 59 patients, who were
randomised to either no training or a
10-month, supervised exercisetraining programme during their
three-times-weekly dialysis sessions.
American Journal of Kidney Disease
2009; 54: 511-21
16
A Japanese study has found no
evidence that restricting protein
intake prevents the progression of
kidney disease in people with
diabetes. Researchers randomised
112 Japanese patients with type-2
diabetes and kidney disease to five
years of either a low-protein diet or a
normal-protein diet. There was little
difference in outcomes between the
groups in terms of time to doubling
of serum creatinine and mean annual
change in creatinine clearance. The
authors comment on the extreme
difficulty of persuading people to
follow a long-term, low-protein diet.
During the study, overall protein
intake was slightly (but not
significantly) lower in the low-protein
group than in the normal-protein
group.
Diabetologia 2009; 52: 2037-45
In an ideal world, care of kidney
disease should be planned so that
patients begin dialysis with a mature
arteriovenous fistula (AVF) or
peritoneal dialysis (PD) catheter.
However,
unplanned
dialysis
continues to occur in patients both
known and unknown to nephrology
services, and in both late and early
referrals. Based on a review of eight
European studies including 5805
patients, these Canadian authors
report that rates of unplanned first
dialysis range from 24% to 49%.
Length of hospital stay and the risk of
death are higher for unplanned
versus planned first dialysis. Patients
undergoing an unplanned first
dialysis also have significantly worse
laboratory results and quality of life
than patients with a planned start.
The authors conclude that halving
the rate of unplanned dialysis could
result in annual savings of $13.316.1 million in Canada alone.
BMC Nephrology 2009; 10: 22
In the V-HEALTH study, treatment
with Vascugel implants appeared to
be safe when used to control the
response to injury following placing
of an arteriovenous graft (AVG) or
fistula (AVF) in dialysis patients. The
study included 57 patients (30 AVG
and 27 AVF) randomised to receive
either Vascugel or placebo at surgery.
There was no difference in
complication rates at four weeks
between the Vascugel and placebo
groups. The authors comment that
larger randomised studies are needed
to see if Vascugel can prolong the life
of AVG or AVF in dialysis patients.
Vascugel implants contain tissueengineered endothelial cells (cells
that line the blood vessels). In animal
studies, Vascugel has been shown to
reduce clotting and inflammation,
and prevent narrowing of the blood
vessel.
Journal of Vascular Surgery 2009;
50: 1359-68
virus eradication. They recommend
that regimens should consist of 3
million units of interferon three times
weekly for at least six months, with
patients encouraged to complete the
full course.
Clinical Journal of the American
Society of Nephrology 2009; 4:
1449-58
This Australian study found that
supplementation with omega-3 fatty
acid reduces blood pressure, heart
rate and triglycerides (a type of ‘bad’
cholesterol) in people with chronic
kidney disease (CKD) without
diabetes. In contrast, coenzyme
Q(10), another dietary supplement,
not only had no effect on blood
pressure but also increased heart
rate. Neither supplement had any
effect on other measures of kidney
and heart health, including
glomerular filtration rate, urinary
albumin or total protein excretion,
cholesterol, HDL-cholesterol, LDLcholesterol, glucose, insulin, or highsensitivity C-reactive protein.
Journal of Hypertension 2009; 27:
1863-72
Stenting and surgery have been both
used to manage patients with clotted
arteriovenous fistula or graft. This
systematic review found that the
rates of successful repair appear to
be similar with both techniques,
though long-term results seem to be
slightly better if clotted forearm
fistulae are treated surgically.
Randomised trials are needed to
provide the high-quality evidence
needed to resolve this latter
question.
Journal of Vascular Surgery 2009;
50: 953-6
A systematic review of clinical studies
found that, compared with standard
care, treatment with ascorbic acid
(vitamin
C)
may
increase
haemoglobin and transferrin, and
reduce the need for EPO in dialysis
patients. The authors comment that
their conclusions are limited by the
small number of studies, their shortterm duration and differing
populations. They recommend longerterm studies to confirm the results,
provide information about adverse
events and cost effectiveness, and
determine whether use of ascorbic
acid translates into improved
outcomes for patients.
American Journal of Kidney Diseases
2009; 54: 1089-97
Infection with the hepatitis C virus
(HCV) is more common in
haemodialysis patients than in
people not on dialysis, but it is
possible to treat the virus with
interferon. After analysing interferon
clinical trials, the researchers found
that dialysis patients are more likely
to respond to treatment if they
receive higher doses for a longer
duration and complete the course of
treatment. Other factors increasing
the likelihood of a positive response
include female gender, lower HCV
blood levels and early evidence of
Rapidly declining kidney function is
associated with a higher risk of heart
problems, but not a higher risk of
stroke in people both with and
without chronic kidney disease. These
findings
come
from
the
Cardiovascular Health Study, which
began in the late 1980s and recruited
people aged 65 years and over living
in four districts in the USA. In the
study, a rapid decline in kidney
function was defined as a fall in
estimated glomerular filtration rate
of over 3 ml/min per 1.73 m2 per year,
measured at entry to the study, and
three and seven years later.
Journal of the American Society of
Nephrology 2009; 20: 2625-30
Want to know more?
The source of the studies is listed as the
title of the journal, year of publication,
volume, and page numbers. For more
details on an individual study, go to
www.ncbi.nlm.nih.gov/sites/entrez
Under the ‘PubMed Tools’ menu, click on
‘Single Citation Matcher', complete the
boxes (\ ‘Journal’, ‘Date’, ‘Volume’ and
‘First page’\) and click the Search button.
There may be a link to enable you to
download the complete article, but this
may involve payment of a fee.
Don’t try this at home!
Any changes to treatment reported in
Medical Matters were carried out under
medical supervision. Never make
changes to your medication by yourself.
If you are worried about your treatment,
talk to your renal unit team.
UP
DATE
KPA
In his address to the meeting, Dr Frankl said:
"I believe that it is important to reflect on the
extraordinary history of this group, which stretches
back to the beginnings of dialysis treatment in the
UK. The treatment of renal failure by means of
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.
SESKPA celebrates its
30th Birthday!
Mrs Jean Scott (3rd Secretary of SESKPA), Alison
Blezard (current Chair) and Mrs Marion Blezard
(2nd Secretary)
Back in September, SESKPA celebrated its 30th
birthday with a reception party inviting many of its
past members to come and celebrate along with
the current ones. An imaginative selection of
promotional material was launched, a raffle held
and a beautiful celebratory cake was cut, to mark
the occasion. Thanks Alison for sending in the
wonderful photograph - it looks like you all had a
great time!
Charing Cross KPA
It was Professor Hugh de Wardener who
established a clinical team here at CXH that was
literally world leading and Hugh became President
of the Renal Association and the International
Society of Nephrology. After Hugh’s retirement, the
mantle of leadership was passed on to Malcolm
Phillips who, with Peter Gower and John Curtis,
converted the treatment of renal failure patients
from a procedure offered to a minority of potential
patients to one that was offered to almost all
patients in need. Initially this was achieved
through the development of a home dialysis
service that was emulated by most other units in
the UK and we had over 100 patients dialysing at
home in the South of England, from Cornwall to
East Anglia. (I gather there was even a single
Scottish patient!)
As dialysis services expanded it was Malcolm
Phillips who steered our services and developed
them further, by instituting satellite dialysis
services which brought the facilities closer to those
who needed them. This model of treatment is the
model on which the current West London Service is
based and again is the model utilised across the
UK. This was undertaken with the support of a
distinguished business team and many of you will
remember names such as Don Keir and, of course,
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
academically.
Caption caption caption caption caption caption
caption caption caption
Mick Hill sent in news of the recent AGM held to
mark the formation of the West London KPA joining together the three previously separate
KPAs from Charing Cross, Hammersmith and St
Mary’s Hospitals. The meeting’s Presidential
address was delivered by Dr Andrew Frankel and
detailed some of the great achievements made by
some talented and dedicated individuals. Probably
the most notable of these was that Charing Cross
pioneered haemodialysis in the UK, carrying out
the first dialysis session on 30 March 1964. The
history behind this life saving step to treating
kidney failure is fascinating…
There are, however, a number of other groups that
I need to recognise. The first are your nurses.
Dialysis nursing has changed considerably over the
years. It was always technical and always
demanding, however, the pressure on our nursing
staff is considerably greater now than it was in the
1970s. The nurses have to put up with
considerable pressure from management and my
rather grumpy moods, however, they work
tirelessly for our patients and I want to recognise
their incredible dedication. The unit is currently led
by Roop Hurril and I have enormous respect for
him, as he juggles the pressures on him, he does
the job well. And CXH, however grotty the
infrastructure, can hold its head up when its
standards are compared to other units and I know
that in addition to this, Roop really cares for the
patients. Roop is backed by a team of nurses who
are truly dedicated to you as patients and to the
CXH dialysis unit itself and Su and her team will
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,
have learnt most from the courage, resilience and
the humour that you all show despite the awful
difficulties that life on dialysis gives you, this
humbles us doctors enormously. It was for that
reason that I take the role as president of the KPA
as such a great honour and responsibility.
The KPA has worked tirelessly to advance the
interests of patients with renal failure and my
hope and expectation is that the newly formed
KPA will provide even more influence and power
to you patients. I know that we are disappointed
that we are still waiting for a new dialysis unit and
god knows that I have seen more plans for this
than I care remember over the last 15 years,
however, an amalgamated KPA should and will
continue to fight this cause for you
So I am unapologetic about the contents of this
speech which is full of back patting and thank
yous. I believe that we have made a difference to
the lives of many people and this is something that
the Charing Cross Renal Services and the CXH KPA
should be rightly proud of. I wish you all the best
of luck in the coming year."
Ray Downey MBE
Ray Downey, Chair of Sunderland KPA has been
recognised in the New Years Honours list this year
with an MBE for charitable services to the
Sunderland KPA.
"I never expected when I started doing charity
work that I would be honoured with the MBE,"
said Ray, who has himself been on dialysis since
1992. "I'm very thankful to the people who put me
forward."
Ray said his proudest achievement was setting up
the special dialysis unit at Haggerston Castle
Caravan Park in Northumberland, so kidney
patients' families could have holidays together.
Over the four years it was in operation, around 560
patients from across the UK dialysed at the centre.
17
AGM
NOTICE is hereby given that the
31st Annual General Meeting of
the National Kidney Federation
will be held on Saturday 27 March
2010, at 1.30pm in the Governors’
Hall, St Thomas' Hospital, London.
1 Full Member Associations may send
representatives.
2 Associate Members, Affiliated Members and
Friends Members may attend and may speak
on non-policy matters, but are not entitled to
vote.
3 If the official representative of any Full
Member Association is unable to attend, then a
substitute representative may attend and vote
on behalf of that Association: Written
notification of the substitution to be given in
writing prior to the meeting.
The Council shall consist of one representative
from each Full Member Association. At the AGM
the Council will elect the Executive Committee. Up
to three Executive Committee members may be
individuals who are members of the Federation,
but not members of any member Kidney Patients’
Association. Any such individual must have their
nomination proposed or seconded by one of the
current Trustees. Any individual who is a member
of a member KPA may stand for election to the
Executive Committee, subject to a maximum of
two individuals from any individual KPA. All
nominations must be proposed, seconded and
submitted in writing to the Federation to arrive no
later than 42 days before the date of the annual
general meeting.
4 Either the proposer or seconder MUST be a
member of the nominee’s own KPA. No
individual may propose or second more than
two nominees for election to the Executive
Committee in any one year.
5 Full and Associate Member Associations may
propose candidates for election and may
submit propositions and items for the Agenda.
6 The Executive shall consist of not less than 11
and no more than 16 members elected by
representatives of Full Members of the
Federation, including a maximum of 6 officers.
All Trustees shall retire annually, but are
eligible for re-election provided that no Trustee
may serve for a period of more than seven
consecutive years except in respect of existing
officers who wish to continue beyond the
seven years limit in order to complete a three
year term of office to an elected position
already held. No individual shall be eligible to
Advertisement
18
stand for election as Chairperson until he or
she has served for at least 12 months as a
Trustee. No KPA shall have more than one
person who is a member of that KPA serving
as an officer of the Executive Committee.
Ballot papers shall be given to Full Members at
the annual general meeting and the counting
of the ballots will take place at such meeting.
The election of Trustees shall be carried by a
simple majority of the votes cast and in case of
equality of votes the Chairperson shall decide
between those candidates by lot, and proceed
as if the candidate on whom the lot falls had
received an additional vote. The Chairperson
shall announce the results at the annual
general meeting. Where there are no more
nominations than vacant posts the candidates
shall be declared elected at the annual general
meeting without the necessity of a vote.
7 All nominations must be accompanied by a
brief statement supporting their candidature
together with a signed ‘Charity Trustees
Eligibility form.”
8 The quorum at an AGM shall be 30% of Full
Member Associations’ representatives.
ALL NOMINATIONS MUST BE SUBMITTED IN
WRITING to the Federation at the above address
TO ARRIVE NO LATER THAN 12 FEBRUARY 2010
The agenda will be circulated to each member
association representative no later than 1st March
2010. Full copies of the Memorandum and Articles
of Association are available upon request.
DIALYSIS CENTRE AND HOTEL ARCUS
DONAL’S
TIME
>>>>>> continued from page 10
As a blood group O donor is also compatible with
a blood group B patient, the 2006 scheme allows,
under certain circumstances, a group O donor
kidney to go to a group B patient so that they do
not wait so long. Also, rare tissue types can now
be considered matched with similar, more
common tissue types so that patients with rare
tissue types should not wait as long. Since the
scheme was introduced the proportion of patients
on the list waiting over five years has dropped
from 17 to 8%. The average waiting time for
Asian patients in the most recent analysis had
fallen to 1511 days.
It is important to remember that transplantation
cannot occur without organ donation and a
crucial aspect of improving access to
transplantation is to increase the number of organ
donors. Following the publication of the Organs
for Transplant Report in 2008 we are working hard
to increase the number of people signed up to the
Organ Donor Register. A publicity campaign was
launched in November 2009 that has already
increased the number registered www.organ
donation.nhs.uk and the next phase of the
campaign will be targeted at ethnic minority
communities with the aim of increasing donation
from those groups.
Renal Patient View, www.renalpatientview.org
enables individual patients to track their status on
the transplant list. NHS Blood and Transplant
www.nhsbt.nhs.uk updates the status every day
so it’s a good way for patients to keep in touch
Letters Page
DEAR EDITOR,
From all the surveys I have read, it would appear
that 90% of people are in favour of organ donation
but never get round to actually committing
themselves by contacting the NHS Organ Donor
Register. Perhaps what is required is a more proactive approach involving a "worthy pyramid"
scheme. This would involve all those on organ
transplant lists, support groups, and other interested
individuals and organisations.
A pro-forma could be compiled outlining how to
register on line, by telephone, or by text. This
information sheet could also contain a cut-off slip at
the bottom which the prospective donor could fill in
and post to the appropriate body.
All those mentioned at the end of the first paragraph
would be given five to ten copies of this letter which
they then pass to family, friends, and advocates.
These, in their turn and having photocopied the
original (or applied to the relevant authority for
copies) could set about enrolling others. Such a
project would have the advantage of person to
person contact with the added bonus of positive
encouragement and explanation from those who
truly believe in this life saving undertaking.
Ray Summers
about all aspects of their kidney disease and its
treatment. Renal Patient View signposts a number
of high quality sites that explain issues of
transplantation in more detail. I would also
strongly encourage you and similar patients to
discuss, with your local kidney and transplant
teams, your individual options and concerns with
regard to home dialysis, potential living donors
from non family members or previously excluded
family members because of blood group or tissue
typing compatibility, and some of the newer
strategies to increase the chance of
transplantation.
In summary, without knowing the details of your
case, your above average wait for a transplant is
probably a consequence of the biological
characteristics that are used in organ allocation.
The national scheme for kidney allocation is under
constant review and was revised in 2006 in order
to remove some of the apparent inequalities. In
addition, considerable efforts are being made to
increase the number of organ donors for the
benefit of all those awaiting a transplant. I hope
that in 2010 you will be able to tailor your dialysis
to your individual needs and priorities and
reconsider live donation, perhaps from ABO or
HLA ‘incompatible’ individuals or be fortunate
enough to receive a call ‘out of the blue’ asking
you to come into the transplant centre for a non
heart beating donor kidney transplant. Early in
2010 the campaign to increase donation will be
focused on Asian and black communities and if
successful, this initiative should help to improve
your chance of an offer.
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,
I have just read your article on home haemodialysis
and would like to offer readers of KL who are
considering this form of dialysis, a tip.
In case of Electricity cuts
or light failure
I've had one or two power-cuts on dialysis in the
two years I've been dialysing at home, but so far
these have occurred only during the day. Manual
wash back is easy enough to perform in the daylight,
but yesterday much of my local area was plunged
into a peaceful darkness - streetlights, shops,
everything. Fortunately I was not dialysing at the
time.
But in case you are affected by a power cut I
recommend arranging for a safety/emergency light
to be positioned within handy reach of your home
dialysis set-up. I use an Emergency LED light/torch
(mine was purchased from Machine Mart) which
plugs into the mains to charge up and is then fully
usable in the event of a power failure.
James Wharham
Thanks for this very useful tip James!
+++
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Krystel and Bruce shine
through
We received a really wonderful and moving letter
from David Wroe telling us about his son Bruce’s
battle with kidney failure, and of his daughter
Krystel’s insistence to donate a kidney to her
brother, despite her young age. David we, like you,
think Krystel is amazing and we can understand why
you are so proud of your two children.
Well done Krystel and good luck with your
life Bruce!
Goodbye Friends
On a far less happy note the NKF has had to
introduce a Policy concerning obituary notices
printed in Kidney Life, limiting this to ‘past
Members of the NKF Executive’ or NKF staff only.
Over the past few months we have received
several very moving letters letting us know of
loved ones who are no longer with us, and to
those of you who have sent these we hope you
will understand this NKF Policy and accept our
heart felt condolences.
19
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20