BMA - BMA writen evidence to the House of Lords Select Committee on the European Union Sub-Committee G Inquiry into the EU Commission's communication on organ donation and transplantation: policy actions at EU level, October 2007

BMA - BMA writen evidence to the House of Lords Select Committee on the European Union Sub-Committee G Inquiry into the EU Commission's communication on organ donation and transplantation: policy actions at EU level, October 2007

Executive summary

The BMA has been concerned for many years about the shortage of organs available for donation and has been actively working with other organisations to find ways to address the problem. We welcome any initiatives that are likely to improve organ donation rates in the UK, and in particular, seeing what lessons we can learn from other countries within Europe. The BMA believes that the most effective way of addressing this issue is a shift to presumed consent, combined with continued organisational change and financial investment. Over the last seven years we have seen increasing support for presumed consent and we believe that it is time to move to this option, following public debate. The BMA supports increased communication and sharing of examples of good practice within Europe but is concerned that any European approach to the problem should bring clear benefits to the UK and not simply add an additional layer of bureaucracy which could, in fact, hinder progress.

Could I be a living kidney donor?

Could I be a living kidney donor? click for information

Living kidney donation in the UK is increasing.

This is against the following background:

The number of people needing kidney transplants continues to increase
There are not enough kidneys from donors who have died available for transplant
The average waiting time for a kidney transplant is two and a half to three years and for some minority ethnic groups it may be more than five years.

Welsh memorial a ‘thank you’ to organ donors - Wales News - News - icWales

Welsh memorial a ‘thank you’ to organ donors - Wales News - News - icWales

Welsh memorial a ‘thank you’ to organ donors

Oct 27 2007 by Madeleine Brindley, Western Mail

A MEMORIAL stone was yesterday dedicated to the hundreds of Welsh people who have donated their organs.
The stone – the first memorial of its kind in the UK – was unveiled yesterday in Alexandra Gardens, in Cardiff.
Last year alone 51 people from Wales donated organs, and almost 100 donated tissue – the stone will recognise their, and others’, gift of life.

GIFT FROM KIDNEY WALES FOUNDATION

BBC NEWS | Health | Organ donation a 'Christian duty'

BBC NEWS Health Organ donation a 'Christian duty'

The Church of England has declared organ donation to be a Christian duty, in keeping with giving oneself and one's possessions freely.
Body parts should not be mistaken for the person themselves, and the best way to treat them reverently is to use them to heal others, the Church said.
It was taking part in a House of Lords consultation on whether there should be an EU-wide position on organ donation.
The Church said it would welcome the creation of a European donor pool.
But its Mission and Public Affairs Division would not be drawn into setting out a position on whether an opt-out system, in which everyone is considered a donor unless they state otherwise, was preferable to an opt-in, when people state their wish to donate.

BBC NEWS | Wales | Memorial to 'hero' organ donors

BBC NEWS Wales Memorial to 'hero' organ donors

Hundreds of families have gathered in Cardiff for the unveiling of a memorial to their relatives who donated their organs to save the lives of others.
Last year 51 people from Wales donated organs, and nearly 100 donated tissue.
Organisers said the stone in the city's Alexandra Gardens was to recognise their "gift of life".
Gaynor Taylor, whose son Richard, 23, died in an in-line skating accident, said agreeing to donate his organs had helped to ease the pain of losing him.
Richard, of Barry, Vale of Glamorgan, died after fracturing his skull when he hit a lamppost trying to avoid a car during a practice run in August 2004.
Richard Taylor was a talented in-line skater
His organs helped save the lives of six others, including the terminally-ill mother of a 10-month-old baby.

Transcript of Proceedings at Petitions Committee of Assembly

PET(3)-03-07: Transcript Click for full Transcript

Deiseb gan Sefydliad Aren Cymru i Gynyddu Nifer y Bobl sy’n rhoi Organau yng Nghymru

Petition by Kidney Wales Foundation to Increase the Number of Organ Donors in Wales

Please read the proceedings in front of the Petitions Committee of the Assembly chaired by Val Lloyd AM.

Plan to extend Welsh kidney transplants - Health News - News - icWales

Plan to extend Welsh kidney transplants - Health News - News - icWales

Plan to extend Welsh kidney transplants
by Madeleine Brindley, Western Mail

PLANS are being drawn up to enable more people to donate their kidneys to a loved one.
Currently about a third of potential living donors are unable to donate a kidney because they have a different blood group to the recipient.
But Cardiff and Vale NHS Trust is working with Health Commission Wales to secure the necessary funding to allow non-compatible blood group live kidney transplants to take place in Wales.
It is hoped the scheme, which will apply to live donors, will enable an extra 15 kidney transplants to be carried out every year in Wales, and help make inroads into the long waiting times for kidney transplants.
Dr Richard Moore, consultant physician at the nephrology and transplant directorate at the University Hospital of Wales, in Cardiff, said, “Nationally, the number of cadaveric organs donates is decreasing.
“Living donation has traditionally been between blood relations, but in the last 10 years that has expanded to those who are emotionally related, such as a spouse. But these donations have been between people with the same blood group.”
Patients who need a kidney transplant in Wales have no other option but to wait – on dialysis – for a cadaveric organ to become available if they do not have a compatible live donor.

‘Politicians talk about their futures – I don’t have a future’ - Health News - News - icWales

‘Politicians talk about their futures – I don’t have a future’ - Health News - News - icWales


Politicans talk about futures

by Madeleine Brindley, Western Mail

STEWART RANKIN, 57, from Rogerstone in Gwent, is one of two people in Wales and more than 100 in the UK waiting for a new heart. He has recently been re-prioritised by his doctors as an urgent case for transplantation, but his chances of a new heart depend not only on a donor organ becoming available, but one which matches his own combination of antibodies.

“Politicians talk about their futures – I don’t have a future; my wife, my family and I discuss my funeral and what I want. I’d like to be able, like First Minister Rhodri Morgan, to discuss my future with my grandchildren while being a father and a husband. But my family gets to talk about my funeral.
“I know that even if an opt-out system is implemented it will be too late for me – my doctors have said that I am now an urgent case and must be done as soon as possible, although I have some interesting requirements, which make me a difficult case.

A day in the life of a donor transplant co-ordinator - Health News - News - icWales

A day in the life of a donor transplant co-ordinator - Health News - News - icWales click

Western Mail

The first cornea transplant took place more than 100 years ago and it has been 53 years since the first kidney transplant operation. But what exactly happens when someone dies and their organs are donated? Dominique Cooke , the regional transplant co-ordinator for South and South West Wales, explains.

Consultant calls for public debate over organ donation - Health News - News - icWales

Consultant calls for public debate over organ donation - Health News - News - icWales
Dr Richard Moore


It is hoped the anguish regarding organ donation in a distressed relative is diminished and that donation would become the default position.
Now is the time to consider the way forward. Too many people are dying on waiting lists following a protracted period of grossly diminished quality of life and we need to resolve the problem.
Too much discussion and debate in the past has occurred within the domain of healthcare professionals, civil service and government without widespread engagement of the public.
This is an area of immense relevance for the general population and the public should decide.
Where do we go from here? Wales has an unique opportunity to lead the way for patients with end organ failure within the UK.
Kidney Wales Foundation, now 40 years old, has petitioned the Welsh Assembly Government to consider this matter urgently and to use its powers to introduce a new law on presumed consent.
The British Medical Association is supportive, as are the chief medical officers for England and Wales.
Wales has a chance to make the difference for UK patients awaiting transplants and enable them to benefit from the gift of life.

Dr Richard Moore is a consultant kidney specialist and has worked at the University Hospital of Wales in Cardiff since 1989. He is a Trustee of Kidney Wales Foundation.

Public debate on presumed consent ‘vital’ - Health News - News - icWales

Public debate on presumed consent ‘vital’ - Health News - News - icWales

Speaking during a Senedd short debate on presumed consent, Health Minister Edwina Hart said, “I think that we would all agree that transplants are one of the most miraculous achievements of modern medicine but, under the current system of organ donation, they depend entirely on the generosity of donors and their families in being willing to make this lifesaving or life-enhancing gift to others.
“It is important to acknowledge the generous gift that many families have given. Without that help many people would not have had a chance to live full and healthy lives.
“As a society, we must be grateful to those donors and families who have given consent."

BBC NEWS | Wales | NHS patients 'lost in the gaps'

BBC NEWS Wales NHS patients 'lost in the gaps'


NHS patients 'lost in the gaps'

Edwina Hart said the problems for some patients in Wales were unacceptable. Some patients get "lost in the gaps" because Wales has too many local health boards (LHBs), Health Minister Edwina Hart has warned.
With a review due to report by the end of the year, Ms Hart has indicated that the number should be cut from 22.
In an interview with a health magazine, she said it was not right that patients were being "batted back and forth".
The Welsh Assembly Government said it was committed to simplifying the system and reducing bureaucracy.
Ms Hart, who became health minister last May, signalled her thinking in an interview with the magazine of patients' group Hafal.

Doctors froze my kidney to save my life | the Daily Mail

Doctors froze my kidney to save my life the Daily Mail

Around 7,000 people are diagnosed with kidney cancer each year in Britain. Barbara Hancock, 68, was one of the first in the UK to be treated with cryotherapy, where the tumour is frozen and killed off. Barbara, who lives with her husband, William, in Port Tennant, near Swansea, tells her story and then her surgeon explains the procedure.

A Swansea AM is backing calls for a change in the law on organ donation.Val Lloyd, AM for Swansea East, said it was vital something was done to tackle the...

A Swansea AM is backing calls for a change in the law on organ donation.Val Lloyd, AM for Swansea East, said it was vital something was done to tackle the...


A Swansea AM is backing calls for a change in the law on organ donation.Val Lloyd, AM for Swansea East, said it was vital something was done to tackle the life or death issue by rolling out a system of presumed consent.The system would see people opt out of organ donation to replace the existing system where people opt in.A petition by the Kidney Wales Foundation is currently being considered by the petitions committee, in the Assembly, which is chaired by the AM.Mrs Lloyd said she believed a change in the system would help to save people's lives.She said: "This is literally a matter of life or death.

European Tribune - Community, Politics & Progress.

European Tribune - Community, Politics & Progress. click for real experience

The clinic is still cramped, with patients seated along the edge of a corridor and not in a proper waiting area. Confusion reigns, once you've signed in at reception. Up to 3 people can be in the same room having bloods done at one time with a queue waiting directly outside, looking in. There's not enough room to queue in busy times, and not enough chairs for everyone. I've been in far better organised and more relaxing clinics. A recent report and subsequent news headlines on Wales' kidney service described it as 'third world'. That may have had something to do with the change...
But this time, the staff were all friendly and helpful. They talked to me, I was a real person. I didn't see my drawn out death playing in front of me. It was much more efficient and organised than ever before. And I said thank you and smiled at the nurse as I left.

Comment

We found this on a blog . We believe we PLUS is getting through. Thank you In Wales-who ever you are.

We want Wales to provide a World Class Service for Patients.

Wales may lead way on organ donor ‘opt-out’ law - North Wales News - News - Daily Post North Wales

Wales may lead way on organ donor ‘opt-out’ law - North Wales News - News - Daily Post North Wales
click for full story

HEALTH minister Edwina Hart was urged to seek a system of presumed consent for organ donation.
Plaid Cymru AM Dai Lloyd used a debate in the Assembly to highlight the shortage of organs for transplants for kidney patients on waiting lists.
His call for a system of presumed consent – when people are required to opt out rather than opt in to the donor register – follows campaigns by groups such as the Kidney Wales Foundation.
Mrs Hart’s personal view was in favour of considering the measure, but only after widespread public consultation.
Dr Lloyd said: “There is currently a dire shortage of organs available for transplants; as a consequence people are dying waiting for a transplant.”
During 2005-6, 31 people died in Wales among 400 waiting for a kidney transplant, he said. “When questioned, 70% of people say that they agree with the principle of organ donation, but unfortunately only 22% actually get round to signing up to the organ donor register.
“It is my belief that were we to have a system where you have to make the choice to opt out, a lot more people would be registered.”
Roy J. Thomas, Chairman of the Kidney Wales Foundation, said: “We believe that Wales can lead the UK on presumed consent.”

icWales - Friendship worth losing a kidney for

Friendship worth losing a kidney for -46% would be live donors in Wales and KW says 70% or more would consider after death

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Welsh People value friendship so much they would donate one of their kidneys to a friend in need.A survey, commissioned by film company Disney, has revealed 46 per cent would give their organ.Sixty-six per cent said they would lend friends cash and almost half - 44 per cent - said they would work for or employ them.Determining the most important factor for choosing a friend, 70 per cent of Welsh people voted for honesty, followed by a good sense of humour - 68 per cent.

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( SOURCE : ARTICLE FROM MARCH 2007 BY LISA JONES SOUTH WALES ECHO)

PLUS COMMENT : The BBC 5 Live ran a great debate on Thursday morning on donating a kidney to a friend . We found this article by Lisa Jones from March to demonsrate the thoughts of us in Wales.On Thursday afternoon a patient rang Kidney Wales Foundation to say that he was asking friends if they would donate to him . NZ legend Jonah Lomu had a friend give him his new life.

9

Until now, living donor transplants have occurred only between relatives or people with a close emotional relationship, such as couples living together.
But a change in the rules last year led the Human Tissue Authority (HTA) to allow strangers to donate to each other.
Experts hope up to 200 more kidney patients a year in the UK could benefit from this kind of transplant in the future. In the first few years, about 50 extra patients are expected to benefit in the UK.

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http://www.bbc.co.uk/health/donation/factfilesod_livingdonors.shtml

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SEE BBC COVERAGE OF BOYLE BROTHERS FROM BRIDGEND

A new kidney click for film

Terry Boyle from Bridgend received a kidney from his younger brother.

Related links
BBC Health: DoNation
NHS: Transplant FAQs

p

http://www.timesonline.co.uk/tol/life_and_style/health/article2141383.ece TIMES ON LINE

Click To See News in other parts of the World that will amaze you

NEW ASSEMBLY DEBATE ON PRESUMED CONSENT

ASSEMBLY DEBATE

Dr Dai Lloyd AM will lead a debate on Presumed Consent in the full Plenary of the Assembly on 10 of October at 5pm. Dai said " This is an important subject and I was pleased to be allocated the time this week as I support the People Like Us Campaign" .

Dai has been a supporter of kidney patients' rights for many years. He did the Walk for Life for Kidney Wales Foundation in Dunvant, Swansea in 2004. He wants cross party support. "This is not a Party political issue ".

He added "I understand the new Petitions Committee are seeking a full debate. I aim to use this debate next week as a lead to assist the people of Wales in assisting others less fortunate than us. Kidney patients deserve our support. We will wake everyone up to the need for a change to UK legislation. I am sure the Minister will respond positively. "

IMPOSSIBLE IS NOTHING ALLISON MEETS THE ALL BLACKS

PEOPLE LIKE US

ALLISON CAMPAIGNING WITH

THE ALL BLACKS IN CARDIFF ON 3 OCTOBER 2007

WE WANT TO ADOPT

" IMPOSSIBLE IS NOTHING" NOW.

Allison pictured with Nick Evans and Doug Howlett

Evidence to Petitions Committee 4 October 2007 "WALES NEEDS WAKE UP CALL"

KIDNEY WALES FOUNDATION EVIDENCE TO WELSH ASSEMBLY MEMBERS

Kidney Wales asked the Chair of the Committee Val Lloyd AM and members Andrew RT Davies AM, Peter Black AM and Bethan Jenkins AM to:

Firstly, refer the Petition and proceedings with their deliberations to the Minister for Heath and Social Services so as to inform her Department ‘s Budget which we understand has not been settled and that KW work with her Department.


Secondly, ask the appropriate Committee of the Assembly to consider our evidence further and for that committee to seek further evidence that value for money would be better obtained by the Government in Wales and UKT working with charities like Kidney Wales Foundation.


Thirdly, for the Assembly under our People like Us Campaign to consider the need for more joined up policies on the issue of the organ donor register and presumed consent.

UK as a whole, with a population of 60 million, carried out 3000 transplants during 2006/2007 compared to only 102 for Wales (89 in Cardiff and 13 in Liverpool) – with a population of 3 million. In simple comparative terms 50 less in average per year than the UK. Wales needs a wake up call. What a difference 50 more per year could make to Wales.

Jonathan Morgan AM supports Campaign

"As the Chair of the Wales Cross Party Kidney Group in the Assembly I would like to endorse the PEOPLE LIKE US campaign and the positive way it seeks to improve renal services in Wales. I will be lobbying the Minister for firm action."

Mr Morgan is the Chair of Health, Wellbeing and Local Government Committee .He has indicated that he would be happy to take Patients views.

Jonathan was elected to the Assembly in 1999 as one of the regional AMs for South Wales Central after working as European Officer for Coleg Glan Hafren in Cardiff. Between 1999 and 2003 he was the Education Spokesman and was appointed as Health Spokesman on his re-election in 2003. Jonathan was elected as the AM for Cardiff North at the 2007 election.

WHY WALES WAS FIRST IN THE WORLD AND SO HISTORY CONTINUES

Lifeline Wales: experience with a computerised kidney doner registry -- Salaman et al. 308 (6920): 30 -- BMJ click on original article in 1993

HISTORY OF SUCCESS IN WALES -LOOKING BACK - WALES WILL
CREATE THE FUTURE AGAIN-HOW THE COMPUTERISED DONORS WERE CREATED IN THE WORLD? HOW KIDNEY WALES WAS AHEAD OF ITS TIME ON DONOR CARDS.

Wales as ever was too modest when it looked at the Organ Donor Registry .We claim Wales was pioneering in the 1980's. The World will recognise the contribution as KW is now 40 years old.

"In 1983 a computerised organ donor registry was set up at Manchester University.Local intensive care units checked the database using personal computers and modems whenever they had in their care a potential organ donor whose wishes were not known. In 1986 the scheme was extended to Wales with funding from the Welsh Office and the Kidney Research Unit for Wales Foundation. Special bilingual donor cards were sent to 1.2 million Welsh homes in 1986, with regular distributions since. The card had a small tear off portion identical with the standard donor card, and this was retained by the person. The other part was returned to the registry office of Lifeline Wales, where personal details were transferred to magnetic tape and sent to Manchester for entry into the computer.
In 1990 the Manchester computer ceased operating and the Lifeline Wales database was transferred to Cardiff. Because the computer terminals in the 15 intensive care units in Wales were seldom used they were withdrawn from service in 1990. Staff now check the database by consulting the scheme's transplant coordinators , who have their own terminal. The donor card was also modified to include a question on blood donation.
One year after launching Lifeline Wales 100 000 potential donors had been registered. The accrual of names has been more gradual since then, reaching 290 640 by January 1993 . About 17 000 new names continue to be added annually. Before 1986 there were about 35 donors each year. Two years after the launch this had increased to 44 donors (representing 20 donors per million of the population), which was the highest regional procurement rate in the United Kingdom. However, only 38 donors were found during 1991 and also 1992. Fourteen people who had registered with Lifeline Wales subsequently died and became organ donors. In none of these cases was the registry consulted because the person who died had been carrying a donor card and his or her views were already known."

The start of presumed consent and the understanding of the gift of life.

Petitions Committee 4 October 2007

Kidney Wales Foundation to give evidence at 12 30pm

Pictured Val Lloyd AM Chair of Committee

The Kidney Wales Foundation (known for many years as KRUF) was established in 1967. In its 40 year history it has, through a thriving fund raising base, supported many aspects of kidney patient care in Wales including transplantation. In addition Kidney Wales played a major role in getting an organ donor card attached to the new driving licence and was instrumental in setting up Lifeline Wales – a computer register of people willing to be organ donors in the event of their death.

.

The current level of organ donation in Wales is too low. Many people wish that on their death their organs be used to save the lives of others but have not opted in to the current system. Kidney Wales endorses the suggestion by the Chief Medical Officer for England and the campaign by BMA Wales for a system of presumed consent. Even with improved conventional donation rates the case for presumed consent remains a strong one to vastly increase the availability of organs to meet growing demand.mpaign” aims to demonstrate the need for improved services for kidney patients in Wales and is championed by those patients themselves. The evidence we present below is informed by the experiences and views of those in Wales who live with kidney disease every day.

Petition Paper Evidence from KW Foundation for Committee

PET(3)-03-07 : Paper 1 : Kidney Wales Foundation (PDF, 83-3KB) click for evidence

Pictured Andrew RT Davies new AM and Member of Committee

The Kidney Wales Foundation welcomes the opportunity to provide evidence to the new Petitions Committee on the vital issue of organ donation and transplantation. This invitation comes at a most opportune point as we launch our People Like Us Campaign. “People Like Us” is a radical patient centred vision for kidney services in Wales with a view to making Wales a world class provider of renal services. Over 400 people are waiting for a transplant in Wales and a crisis in organ supply faces Wales as demand increases year by year. Our campaign aims for a new transplant strategy based on: introducing legislation in Wales for presumed consent; working with partners to deliver a substantial increase in donors; and delivering a new dedicated transplant unit for Wales.

Petitions Committe Evidence 4 October 2007 from Kidney Wales Foundation

Evidence demonstrating the need for more funding on donor awareness will be given to the Petitions Commitee of the Assembly tomorrow at 12 30pm
by Kidney Wales Foundation

pictured Bethan Jenkins new AM and member of Committee

What are the figures of spending by Government's UK Transplant on donor awareness in Wales?

1. 2004-05 £36,674.

2. 2005-06 £42,593, of this £35,000 provided by the Assembly Government.

3. 2006-07 £95,000 made up of £35,000 base funding, plus extra £20,000. £40,000 from the Assembly in March for a leaflet drop.

What is the real effect of our Petition if actioned?

What we are saying is that if the Government increase the amount in 2007 -2008 the figures could look like
UKT base £35,000 plus £20,000= £55,000
Assembly £40,000

Extra £35,000 say from Assembly. We believe more should be allocated.

Matched by us the Kidney Wales Foundation at £35,000

Total is then £165,000. Wales will have over a 67% increase in the budget.

Awareness

The Chief Medical Officer in England, Sir Liam Donaldson in July this year suggested we adopt an “opt in system” similar to Spain where transplant rates are far higher than they are here. This is known as you all know as the system of “presumed consent”. This would view everybody as a potential donor unless they had opted out before their death. On the day Sir Liam’s Report was published the coverage it received led to 17,000 signing on to the Organ Donor Register operated by UKT we estimate it was around 22,000 after that proving that raising awareness makes a difference.

FACTS

UK position -400 people die every year waiting for transplant in UK. To meet demand for organs the number of signatures on the ODR would need to almost treble. In UK there are 8,000 people waiting yet just 3,000 transplants carried out every year.

In Wales, 750,000 registered on the ODR that figure are 25 % of population average is 24% in UK. UKT always give that as a justification. Over 400 waiting for a transplant, we believe there are more than this but these is UKT and Govt figures.

Transplants Cardiff 2004-2005, 83 2005-6, 78 and 2006-7 , 89
North Wales Liverpool 2004-2005, 16 2005-6, 16 and 2006-7, 13
All children are transplanted outside of Wales in Bristol and Liverpool.

Published Letter to Western Mail Wednesday, October 3

icWales - Wednesday, October 3

Well done, Minister
SIR – Further to your article (“Minister orders review of health body”, September 27), the Kidney Wales Foundation People Like Us Campaign would like to congratulate Health Minister Edwina Hart on making the decision to ask Professor Mansel Aylward, chair of the Wales Centre for Health, to undertake a review of Health Commission Wales’ functions, including its decision-making processes and appeals mechanisms.
The PLUs campaign was launched in the National Assembly for Wales on September 20 with a series of key aims to raise the standards and accessibility of kidney services in Wales. This campaign is an attempt to voice concerns that are never heard: Patients who are struggling to get on with life, whether on dialysis, waiting for a transplant, or worrying about their care or the care of their loved ones.
Kidney Wales believes such voices should be heard. The Minister reflected this when she said during her announcement that her decision to call the review had been influenced by the concerns of patients.
Many of the key areas which affect us are funded and planned by Health Commission Wales. To quote Dr Dai Lloyd AM, in responding to the Minister’s Statement to the Assembly: “It is clear that there is an urgent need to increase the number of dialysis units in Wales. That need has been urgent for years now. There is also an urgent need to establish a transplant unit at the University Hospital of Wales in Cardiff. That need has also existed for years. Both of those decisions are within the ambit of Health Commission Wales, but nothing has happened, and people are suffering.”
The Minister has asked Prof Aylward to report his findings to her by the end of this calendar year. We commend the Minister for her speedy action.
The suffering must end.
ALLISON JOHN
Leader of the People Like Us Campaign, Ambassador, Kidney Wales Foundation, Museum Place, Cardiff

FIRST MINISTER HEALTH MINISTER AND CHIEF MEDICAL OFFICER IN FAVOUR OF CONSIDERING PRESUMED CONSENT

In a response to the Western Mail the following statement was given by the Government:

A Welsh Assembly Government spokesman said, “The Chief Medical officer Dr Tony Jewell, the Health Minister Edwina Hart and First Minister Rhodri Morgan are personally in favour of considering presumed consent as a way of increasing the number of organ donations.
“The Health Minister has stated this view at two recent meetings with Kidney Foundation Wales. However, they have all recognised that any changes to legislation would require wide-ranging consultation and testing of public opinion.
“The Welsh Assembly Government recognises there is a critical shortage of donated organs and increasing numbers of patients being listed for transplant.
“It is therefore important for people to consider signing up to the UK-wide organ donation register.”

See article below on Melanie Dark by M Brindley Health Correspondent of Western Mail

ASSEMBLY DISCUSS KIDNEY CAMPAIGN NEEDS AND HEALTH COMMISSION WALES

Debate Wednesday 26th of September 2007 in the National Assembly of Wales (Plenary Session)

Dai Lloyd AM said "...a meeting of the Wales
cross-party kidney group was held here last
night, which many of us attended. It has
become clear that there is an urgent need to
increase the number of dialysis units in
Wales. That need has been urgent for years
now. There is also an urgent need to establish
a transplant unit at the University of Wales
Hospital in Cardiff. That need has also
existed for years. Both of those decisions are
within the ambit of Health Commission
Wales, but nothing has happened, and people
are suffering. The Minister will be aware
of an active kidney patients’ campaign to
highlight the urgent need to improve the
number of services available, particularly
with regard to dialysis, but we also need a
new transplant unit in UHW.
HCW has known about all of this for several
years and there appears to be no movement
whatsoever. No-one is pretending that the
commissioning of specialised services is
simple or straightforward, particularly within
funding constraints, but we need to see and
feel that there is ability and that specialised
services are being developed, and that HCW
is not always responding to a situation where
it has to save money, or it feels that it has to
respond to some sort of funding crisis. It is
there to serve patients, and kidney patients in
particular need to see movement on dialysis
and on transplants.
...In conclusion, I hope that the review into
Health Commission Wales can move the
situation forward with regard to service
provision for specialist services for the
people of Wales. At the moment, kidney
patients, the morbidly obese, and various
other specialties are suffering because of a
lack of provision; that certainly needs to be
addressed."

In Response:
Minister for Health Edwina Hart AM :

"The issues that you have
raised are what influenced my decision to
have a review of Health Commission Wales.
Some of the issues around obesity services
and anorexia—on which I know many
Members have had correspondence with
regard to provision and the need for
services—across Wales have been
particularly important, as have those relating
to kidney services. When you think about
what can be done these days through dialysis
and how you need ease of access to dialysis,
that is certainly an important area to look at.

However, you are quite right—if this is the
commission of specialist services it has to be
about the commissioning of specialist
services, that is, how they can work properly
across Wales in rural and urban areas, and
ease of access for patients. Those should be
the criteria by which the commission deals
with it.
....However, I take on board your points, Dai,
and some of those key areas certainly
influenced my decision to have a review.
Presiding Officer, in light of the interest in
my statement and the review of Health
Commission Wales, I might have a look
again at my terms of reference to see whether
I can beef them up a little to take into account
Members’ views today."

RESEARCH SHOWS CHANGE IN LAW NEEDED

SSRN-The Impact of Presumed Consent Legislation on Cadaveric Organ Donation: A Cross Country Study by Alberto Abadie, Sebastien Gay click

LEADING HAVARD AND CHICAGO RESEARCH BACKS NEED FOR LEGISLATIVE CHANGE

The gap between the demand and the supply of human organs for transplantation is on the rise, despite the efforts of governments and health agencies to promote donor registration. In some countries of continental Europe, however, cadaveric organ procurement is based on the principle of presumed consent. Under presumed consent legislation, a deceased individual is classified as a potential donor in absence of explicit opposition to donation before death. This article analyzes the impact of presumed consent laws on donation rates. For this purpose, this research constructs a dataset on organ donation rates and potential factors affecting organ donation for 22 countries over a 10-year period.

The Research finds that while differences in other determinants of organ donation explain much of the variation in donation rates, after controlling for those determinants presumed consent legislation has a positive and sizeable effect on organ donation rates.

THE PLUS CAMPAIGN WILL MAKE THIS CLEAR TO THE NATIONAL ASSEMBLY OF WALES.

Assembly Member Mick Bates highlights plight of kidney patients in Powys (Montgomeryshire Liberal Democrats)

Mick Bates highlights plight of kidney patients in Powys (Montgomeryshire Liberal Democrats) Click

Highlighting the lack of provision for kidney treatment in Powys, Mick Bates AM comments on the prospect that patients in Powys may be forced to travel as far as the West Midlands for treatment:
"Patients are currently travelling from Powys to dialysis units in Shrewsbury and Wrexham but now these units are facing serious capacity issues. Patients are being threatened with a move to the unit at Walsall - this is just not good enough.
"The Assembly Government needs a strong plan to support kidney treatment in Wales to resolve these local capacity and travel issues - we need an urgent plan of action for the dialysis unit proposed for Welshpool hospital as well as firm plans for further units across the country."

Research backs Campaign claims of growth of need and for planning requirement in Wales

Equity of access to dialysis facilities in Wales -- White et al. 99 (7): 445 -- QJM Click reserach

It is clear that the numbers of patients needing dialysis, and in particular in-centre haemodialysis, will continue to rise. In Wales, dialysis capacity is overwhelmed, more than 20% of the population still lives more than 30 min drive away from a dialysis unit, and there are areas of relative under-provision. There is, therefore, a need to plan the building of additional, appropriately resourced, facilities.


In the rest of the UK, subsidiary units are sited in more ‘off hospital’ locations. Without exception, the major area of complaint for patients undergoing HD is transport and journey times: a journey to and from an HD unit in Wales can take longer than the treatment itself. The large and sparsely populated areas outside of the major towns have small roads that also traverse difficult terrain, making travel time even longer and less predictable. The location of future units should, therefore, take these and other factors into account.

Equity of access to dialysis facilities in Wales P. White1, V. James1, D. Ansell2, V. Lodhi3 and K.L. Donovan3,
From the 1Cartographics Department, Statistical Directorate, Welsh Assembly Government, Cardiff, 2UK Renal Registry, Southmead Hospital, Bristol and 3University Hospital of Wales, Cardiff, UK

PLUS CAMPAIGNER Melanie hopes for a better life

icWales - Melanie hopes for a better life click for full article

Melanie hopes for a better life

by Madeleine Brindley, Western Mail

MELANIE DARK spends two hours every day attached to a machine. It has been this way for the past 10 years.
The 45-year-old mother-of-one and her family have had to adjust their lives to the disease, and the machine, which regulates Melanie’s life.
Her kidney failure and her dependence on haemodialysis not only dictate where she can go on holiday, but what she can eat and how much she can drink.
Although the dialysis has kept her alive for the past 10 years – during which time Melanie has been waiting for a transplant – it is now taking its toll on her body.
“It is horrendous, absolutely horrendous,” she said. “I can do the machine; I can put the needles into me, but it’s the side-effects.

Dialysis has left me absolutely shattered and, because I have been on it for quite a while now, it is starting to affect my joints.
“I’m having awful pain when I’m walking. I like making cards but if I do that for a while, I have pains in my hands and my shoulders.”
Melanie, who lives near Carmarthen, is one of hundreds of patients in Wales who depend on dialysis for survival. She is also one of some 380 people in Wales who are waiting for a phone call to tell them that a donor kidney has been found."