SEE YOU ON 12 JANUARY 2008

To mark the work of the CAMPAIGN a rally is taking place in Swansea chaired by Allison John.

Please register by e mailing Allison on allison@kidneywales.com

A number of speakers will attend and the results of the Campaigning discussed to take matters forward.


Venue is Village Hotel Swansea.Start is 9 30am for coffee.

THE news that a specialist kidney transplant unit will be developed in the capital is a fantastic boost for patients. - icWales

THE news that a specialist kidney transplant unit will be developed in the capital is a fantastic boost for patients. - icWales


THE news that a specialist kidney transplant unit will be developed in the capital is a fantastic boost for patients.
Dec 29 2007 by Gavin O'Connor, South Wales Echo

For far too long there have been claims that Wales was being left behind in the pioneering field due to a lack of modern facilities.

So it is only right the nation’s biggest hospital has departments such as this, going some way to ensuring world-class healthcare is provided here.

The 21-bed facility will lead to nearly 200 operations being carried out each year. The estimated cost of the new department, at more than £4m, sounds a lot. But there can be no price tag too great put on a person’s health.

TRANSPLANT UNIT SUCCESS - PRAISE FOR ALL AND NOW WE NEED THIS TO BE WORLD CLASS

The News yesterday that a dedicated Transplant Unit is now announced is great news and we pay tribute to the Minister for Health Edwina Hart and the health professionals to achieve this key objective of our Campaign.

Everyone has been working hard to acheieve this in recent months and we now have a great opportunity of creating world class facility.

The Business Justification Case (BJC) for the Development of a Renal Transplant Centre at UHW received Cardiff and Vale NHS Trust Board approval at its meeting on 6th December 2007. The BJC has also been cleared by Health Commission Wales, South East Wales Regional Office and the Capital, Estates and Facilities Branch of the Department of Health and Social Services.

The BJC demonstrates that the development of a Transplant Centre is the only viable solution for the continuation of this service which would comprise 21 transplant and chronic renal failure surgical beds, (11 new beds and 10 beds transferred from ward B5, UHW) and associated renal outpatient facilities. This development is needed to overcome both capacity and environmental issues and also to meet the standards of care included in guidance in the Renal National Service Framework (NSF).

The needs assessment analysis indicates a 10 – 15% annual growth in activity and shows that the Trust is unable to provide a clinically effective and viable service within its existing facilities given this growth in demand along with the advent of new treatments which will enable more people to become eligible for transplants over the next few years.

The preferred option identified in the BJC is to develop a Renal Transplant Centre, including co-located outpatient facilities located on two floors of a tower block (Tower Block 3) to be constructed above the current PET development, at UHW. The Trust has contracted to build the seven floor Tower Block 3, plus basement, of which PET currently accounts for the basement, ground and first floors. The PET element of the building work is funded by the Assembly Government.
The Trust is proposing to locate the Renal Transplant Unit on floors 2 and 3 thereby providing excellent clinical adjacencies to existing renal services. These floors will also be funded by the Assembly Government. Proceeding as an extension to the existing PET contract represents a highly cost effective solution.

This would realise a number of benefits in relation to increased capacity and an enhanced environment as the accommodation would be designed to modern standards with an appropriate percentage of single en-suite rooms to assist with the prevention of infection and to meet patient expectations in regard to privacy and dignity.

This option would also ensure the reputation of renal transplant services as a ‘Centre of Excellence’ and would support the consolidation and expansion of both tertiary and local provision so that a transplant service can be offered to patients on an all Wales basis.

Whilst the preferred option offers a cost effective solution in terms of time and cost, the construction period for the completion of the works cannot be undertaken in less than 22 months. As additional capacity is required as soon as possible the BJC outlines transitional arrangements to support the service until the final option can be fully implemented.

The first phase proposes that a 4 bed ward is created in accommodation not currently utilised on the UHW site to provide capacity for haemodialysis patients currently accommodated on Ward B5. This would then create additional transplant and renal surgery capacity and would allow for up to 115 transplants per year. These beds could be available by March/April 2008. The revenue cost for this is £2.41million

During the period 2010/12 the Trust would undertake up to 140 transplants per year and this would be Phase 2 of the development. This phase would require 16 beds and the revenue cost would be £4.40million.

Phase 3 would require the full 21 beds to be available by 2012 and would allow for up to 160 transplants per year at a revenue cost of £5.85million.

The capital cost for the development is £4.27million.
renal facilities in Wales.

Transplant unit given the go-ahead - icWales

Transplant unit given the go-ahead - icWales

Transplant unit given the go-ahead

by Ben Glaze, South Wales Echo


Transplant unit given the go-ahead

A SPECIALIST kidney transplant unit for Wales’ biggest hospital has been given the go-ahead.

Plans for the Renal Transplant Centre at the University Hospital of Wales, Heath, Cardiff, have received the backing of various health bodies and will lead to a 21-bed, £4.27m department.

Experts believe demand for kidney transplants in the Welsh capital could soar by up to 15 per cent a year and the existing unit would be unable cope.

New treatments mean more and more victims will be eligible for transplants and the new unit could be up and running in two years.

Floors two and three of a seven-storey tower block will house the new department, which medics believe could perform 160 operations a year by 2012.

Last year 89 were carried out in Wales and there are currently about 400 people waiting for operations.

Cardiff medical student Allison John, 29, is an ambassador for Kidney Wales Foundation and has received heart, lung and kidney transplants.

She said today: “This is fantastic news. We want to make Wales a world-class provider of healthcare and we desperately need somewhere that can do this.

“Now we are going to get it, it will mean great benefits not just for existing kidney patients, but for those who need transplants and those who have had them, because of the improved aftercare.

“All our campaigning has finally paid off and this is a great Christmas present for kidney patients.”

Earlier this year, Professor John Salaman, who pioneered kidney transplants in Cardiff more than 30 years ago, branded the lack of a dedicated kidney transplant in Wales “shameful”.

He said: “Elsewhere in the UK and Europe, major hospitals have their own stand-alone transplant units.

“Wales deserves to have one and must not get left behind.

“It is shameful Wales still does not have a dedicated transplant unit and staffing may become a problem in the future with competition from other parts of the country.”

A spokesman for the Welsh Assembly Government said: “This enhanced facility will mean that greater numbers of patients will be able to get this vital treatment locally, allowing family and friends to visit them which will help aid recovery.

“More than £4.2m will be made available from the All-Wales Capital Programme to support the centre, which is expected to take up to two years to complete from April next year.”

FOUNDATION AND PLUS ASKED TO GIVE ORAL EVIDENCE TO HOUSE OF LORDS

EVIDENCE TO THE SELECT COMMITTEE ON THE EUROPEAN UNION SUB COMMITTEE (SOCIAL POLICY AND CONSUMER AFFAIRS: Inquiry into the EU Commission’s Communication on organ donation and transplantation: policy actions at EU level

Following the written evidence provided by Kidney Wales Foundation , we have been asked to attend the House of Lords in January 2008 to provide oral evidence. We have asked the Committee to:

Firstly, look at a UK and European wide call for a change in legislation on presumed consent.

Secondly, how organisations like UKT work effectively with charitable organisations in Wales and other regions on promotion and awareness.

Thirdly, to consider that all UK and European regions have a fair amount of allocated funds to spend on donor awareness.

Fourthly, a European Donor Card be activated and enabled as soon as possible while waiting for a Directive on presumed consent.

We concur with the view in the communication from the Commission of the European Communities: Organ Donation and Transplantation that organ transplantation offers excellent results for patients. For those with kidney disease renal transplantation provides the most successful and cost effective treatment for established renal failure. However, in Wales a relatively low number of people are receiving transplants as a consequence of three inter-related factors:

• Lack of availability of organs
• Lack of capacity to undertake transplantation
• Sub-optimal organisational arrangements.

PATIENTS RALLY SATURDAY 12 JANUARY 2008 SWANSEA

To mark the work of the CAMPAIGN a rally is taking place in Swansea chaired by Allison John.

Please register by e mailing Allison on allison@kidneywales.com

A number of speakers will attend and the results of the Campaigning discussed to take matters forward.


Venue is Village Hotel Swansea.Start is 9 30am for coffee.

PRAISE FOR THE CAMPAIGN IN ASSEMBLY DEBATES IN 2007

Edwina Hart AM speaking in the Assembly as Health Minister "...the People Like Us campaign. It has been an exceptionally responsible campaign that has tried to highlight what practical actions we can take to improve the quality of life of patients with renal problems. I have responded directly to People Like Us about the issues that have arisen from its document and I would be happy to share that with Assembly Members, because it will indicate my thinking. I have also recently met representatives of the campaign. It has been proactive in making arrangements for me to meet with other voluntary organisations with an interest in the whole issue of donors. It is important that we have an integrated campaign about donors."

David Melding AM"I commend the People Like Us campaign on raising these issues in a constructive way. It has said a few things to which you may want to respond at some point, Minister. It has argued for one organisation to commission services across Wales, thereby ensuring a consistent standard. I am not sure what your response to that would be, Minister, but it is worthy of consideration. Such a model could meet many of the concerns that people have. Also the need for better preventative work, and the management of chronic disease—kidney disease in this case—needs to be emphasised too. "

JENNY RANDERSON AM "... I commend the work of the Kidney Wales Foundation and the People Like Us campaign, which has worked hard to put this issue on the agenda. It is clear that it has succeeded in stage one of its campaign."

EDWINA HART AM "I concur with your comments about the Kidney Wales Foundation, which has done an excellent job in highlighting these issues to the public and to us as politicians. It is to be commended for that, because that is the role of the voluntary sector. The good thing is that the voluntary sector can see quite clearly that it has been successful in helping Government to look at their policies. That is a plus for the Government and for the working of the National Assembly, which is an important point to note."

BRIDGEND MP HIGHLIGHTS CONCERNS OF CAMPAIGN IN PARLIAMENT

Member of Parliament for Bridgend raises issues in the HouseMrs. Madeleine Moon (Bridgend) (Lab): May we have a debate on whether people should have to opt out of kidney transplantation, rather than opt in to it? My constituent, Mark Schofield, recently travelled to the Philippines in an attempt to buy a kidney for £40,000, when the one donated by his mother Jean failed. We are now at the stage where 380 people in Wales are waiting for kidney transplants. Could we consider moving the situation forward, to an opt-out rather than an opt-in?

Ms Harman: I will draw my hon. Friend’s comments to the attention of my right hon. Friend the Secretary of State for Health. We all know that transplantation of a donated organ can transform the life of the recipient. We also all know that many people suffer while they are waiting for a transplant or even die before it becomes available. We know, too, that relatives of many people who would be happy to donate their organs often do not receive a request on their behalf. I will bring that matter to the attention of my right hon. Friend the Secretary of State for Health.

NHS Wales News - Welsh Assembly Government Statement from Edwina Hart, Minister for Health and Social Services

NHS Wales News - Welsh Assembly Government Statement from Edwina Hart, Minister for Health and Social Services

News: Welsh Assembly Government Statement from Edwina Hart, Minister for Health and Social Services
21 November 2007, Welsh Assembly Government


Minister for Health and Social Services Edwina Hart makes statement on Renal Services and Transplantation


Presiding Officer, I am grateful for the opportunity to make this statement setting out my plans for renal services and transplantation in Wales.


I have recently spoken with renal patients, clinicians and carers in Wales to listen to their experiences. These discussions have reinforced my commitment to ensuring that renal patients receive their care as locally as possible as part of a comprehensive, well organised service.


Wales has a good record for both renal dialysis and transplantation rates in the UK, but more needs to be done to meet both present and future demand.

BBC NEWS | Wales | Debate on opt-out organ donation

BBC NEWS | Wales | Debate on opt-out organ donation

Debate on opt-out organ donation

There is a serious shortage of organs in the UK , Edwina Hart said
A series of public debates are to be held about introducing a system of "presumed consent" for organ donation, says the Welsh Assembly Government.
Health Minister Edwina Hart told AMs she wants people to consider Wales moving to an opt-out system.

It would mean everyone would be considered as a potential organ donor at death, unless they had registered their objection.

Charities and people who have had transplants have welcomed the move.

Around three-quarters of a million people in Wales are currently on the organ donor register.

But the gap between the number of organs donated and the number of people waiting for a transplant is increasing, the minister said.

"I know without donor families I myself would have been dead 12 years ago" said

Alison John, ambassador for Kidney Wales Foundation

Roy J. Thomas, chair of Kidney Wales Foundation, which supports people with kidney disease and has lobbied for the opt-out system, added: "We believe that if people are prepared to accept an organ for themselves or their loved ones then they should be prepared to give an organ to help save someone else's life."

Last month a survey by the British Medical Association revealed that two-thirds of more than 2,000 questioned felt the UK should move to an opt-out system.

But just over a quarter of the people surveyed said they were on the register.

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

HEALTH minister Edwina Hart was urged yesterday 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.

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

=

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.

=

( 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."

HEALTH COMMISSION WALES

Minister orders review of health body
Sep 27 2007
by Madeleine Brindley, Western Mail

A REVIEW will be carried out into the controversial and indebted body which oversees health funding in Wales, it was announced yesterday.
Health Minister Edwina Hart revealed the move in a bid to ensure the public does not lose confidence in Health Commission Wales, which has often been accused of blocking access to potentially life-saving and life-changing services and treatments.
Health Commission Wales (HCW) is responsible for funding highly-specialised health services and treatments.


PLUS Comment:

The announcement and debate following the Minister's statement saw a statement in the Assembly by Plaid Cymru's Dai Lloyd AM on the Wales Cross Party Kidney Group and the Conservative David Melding AM- also at the meeting . Dai Lloyd mentioned the dialysis services highlighted by the Campaign. Kidney Wales have been contacted by many patients and carers since the launch. Time and time again reference is made to HCW and failures in commissioning. Today Mr Gwilym Price from Blaenau Ffestiniog North Wales asked us for support for a satellite service for dialysis in Blaenau. He has been campaignig from his home in Tanygrisiau.We have written to the Minister. In the debate the Minister confirmed that the PLUS Campaign had influenced her thinking and had been at the forefront of her mind.

Petitions Committee of the Assembly

Kidney Wales Foundation as part of the PLUS Campaign will attend the new Petitions Committee of the Assembly chaired by Val Lloyd AM (pictured) on 4 October at 12 30pm.

To the National Assembly for Wales:
PETITION BY KIDNEY WALES TO INCREASE THE NUMBER OF ORGAN DONORS IN WALES
We, the undersigned, declare the need to increase the number of people in Wales who carry organ donor cards.
We support the assertion in the recently published Welsh Assembly Government statement ‘Designed to Tackle Renal Disease’ that “The supply of donor kidneys… does not match the demand and as a result there is an ever-increasing waiting list for such treatment.”
20 to 22% of the eligible population in Wales is registered on the NHS Organ Donor Register, though 70% of the Welsh population has indicated they would be prepared to be involved in such a scheme.
We, the undersigned, recognise that a united campaign is needed to increase the number of potential organ donors through continued investment in publicity and in education campaigns to increase public awareness of the need for organ donation, to encourage people to enrol on the organ donor register and to make their wishes known to those close to them.
Kidney Wales Foundation has historically been instrumental in promoting organ donation in Wales and wishes to continue to highlight the importance of organ donation
The petitioner(s) therefore request/call on that the National Assembly for Wales to work with Kidney Wales Foundation and other stakeholders to set and achieve a target of doubling kidney donors in Wales by the end of this National Assembly in 2011.
We request that the Assembly match our funding for a campaign by matching our contribution pound for pound.

New Cross Party Group of Assembly Members Meet

Wales Cross Party Kidney Group

The Assembly Wales Cross Party Assembly Group met last night to consider the Campaign.

Present were

Dr Dai Lloyd AM (PC, South Wales West) – Acting Chair
Jenny Randerson AM (LD, Cardiff Central)
Nerys Evans AM (PC, Mid & West Wales)
David Melding AM (Con, South Wales Central)
Allison John, Kidney Wales People Like Us Campaign Ambassador
Roy J. Thomas, Executive Chairman, Kidney Wales
Prof John Salaman (representing WKPA)
Dr Richard Moore
Daran Hill

The Meeting discussed the PLUS Campaign and will meet again at the end of October.

Wales Lags 4 years Behind England on Kidney Treatment (Jenny Randerson AM)

Wales Lags 4 years Behind England on Kidney Treatment (Jenny Randerson AM)

At the start of Kidney Wales Foundation's four month campaign to improve Kidney services in Wales Jenny Randerson AM , Welsh Liberal Democrat Health Spokesperson has stated her full support for their work. She said:
"The Renal National Service Framework critically lacks an action plan and a measurable timetable for action. A 2006 study undertaken by researchers from Bristol and Cardiff showed that 20% of the population lived more than 30 minutes from a dialysis unit and in large parts of Powys and Pembrokeshire the drive time is over 60 minutes. The Kidney Foundation have suggested that Wales is around four years behind.
"There are serious concerns about poor accountability for dialysis units and the number of kidney transplants remains totally inadequate. I fully support campaigns by both the BMA and Kidney Foundation Wales to increase the number of donors.
"This really is a life or death issue."
The Kidney Wales Foundation have presented a petition which requests that the National Assembly for Wales works with Kidney Wales Foundation and other stakeholders to set and achieve a target of doubling kidney donors in Wales by the end of this National Assembly in 2011. The petition also requests that the Assembly matches pound for pound the funding provided by Kidney Foundation Wales towards their campaign

Edwina Hart addressing People Like Us Launch

PROMISES FROM EDWINA TO PATIENTS

Minister Edwina Hart promised that in light of the Campaign and her engagement with Kidney Wales and Patients she would address their concerns. This was the third time Kidney Wales had arranged a meeting with the Minister since her appointment in the post in the Summer. Kidney Wales will now press for an answer to the Report.

.

Allison John Leader of the Campaign said " We thank the Minister for her deep interest " and added "we now want action".

,

Roy J Thomas of Kidney Wales said " We like the Minister's no nonsense approach. If we are to have a world class health service we need to change and we need leadership".

LAUNCH AT ASSEMBLY 20 September 2007

The Wales Health Minister Edwina Hart AM agreed to consider the hard hitting report from the Campaign People Like Us Leader Allison John.

In a meeting with leading politicans from across all parties the Minister said that she would reply to the report but will also look at other areas such as a public consultation on presumed consent.Others who attended included Kidney Wales Patients from KW Children's Unit UHW, BMA, ABPI Renal Committe, Patients from Haverdfordwest , Carers and Donor Families . The Launch featured as lead news on BBC and ITV and was the lead editorial in the Western Mail and other leading newspapers. The Press featured stories from Patients.

BBC NEWS | Wales | 'Third World' kidney care claim

BBC NEWS Wales 'Third World' kidney care claim click for full coverage

BBC WALES NEWS- 20 SEPTEMBER 2007 MAIN NEWS REPORT

Campaigners want more dialysis units across Wales Kidney patients in part of Wales are suffering "Third World" conditions with renal units at breaking point, a charity has claimed.

Kidney Wales Foundation said some were going "hundreds of miles" a week for treatment in "unacceptable" conditions.

At one hospital it said dialysis was carried out in an "old broom cupboard", and at another 16 patients were treated in a portable cabin sharing one toilet.

"Subjecting sick patients to treatment in poor facilities and making them wait hours to get home is simply not acceptable in the 21st century ".
Allison John, campaign leader

Health Minister Edwina Hart said she was considering treatment provision.

BBC reported on:
More dialysis units across Wales
Better transport and facilities for patients
A dedicated transplant unit at the University Hospital of Wales
One renal organisation to co-ordinate kidney services in Wales
Radical measures to double the number of organ donors by 2011

People Like Us Campaign

SOUTH WALES ECHO REPORT

South Wales Echo - ‘Patients are facing long journeys for kidney ops’

‘Patients are facing long journeys for kidney ops’
Sep 20 2007
by Greg Tindle, South Wales Echo

DESPERATELY-ILL patients are missing out on kidney transplants in Wales because of a lack of modern hospital facilities, it was claimed today.
Patients waiting for surgery are being forced to travel long distances and then treated in “Third World” conditions because of a lack of NHS investment.

Professor John Salaman, the surgeon who pioneered kidney transplants in Cardiff more than 30 years ago, said Wales was now being left behind because of its poor record.
At present there are 400 patients waiting a kidney transplant in Wales for a waiting list that is growing daily. Last year there were 89 transplants carried out.

The charity Kidney Wales Foundation, backed by the Welsh Kidney Patients’ Association, today launched a campaign to highlight the problem.

At present the only facilities in Wales for a transplant is part of a medical ward at the University Hospital of Wales in Cardiff. The campaigners are demanding that a dedicated transplant unit at UHW is created as an immediate priority.

Prof Salaman, said: “It is shameful that Wales still does not have a dedicated transplant unit and staffing may become a problem in the future with competition from other parts of the country.
“Elsewhere in the UK and in Europe, major hospitals have their own stand-alone transplant units. Wales deserves to have one and must not get left behind.”

-North Wales News - News - Daily Post North Wales

Kidney units in Wales ‘at breaking point’ - North Wales News - News - Daily Post North Wales click for full story on CAMPAIGN and Don Brown


Kidney transplant patient Don Brown, 56, from Prestatyn, said while facilities at Ysbyty Glan Clwyd were modern, transport problems were exhausting for those undergoing four hours of dialysis, three times a week.

Mr Brown, who returns for treatment every four months after a successful transplant 29 years ago, also appealed for more kidney donors.
“The ambulance service is so busy and I have seen elderly people sitting around for hours after four hours of dialysis, just for transport,” he said. “There’s a big shortage of donors, and you can wait for years for a transplant operation.”

Dr Mick Kumwenda, renal physician at the Conwy and Denbighshire NHS Trust, said: “The number of patients needing dialysis is going up every year.
“Most dialysis units are now almost to full capacity and the status quo is not sustainable. We need extra capacity for dialysis and manpower across Wales, but most importantly we need more organ donors so we can carry out more transplants and get people off dialysis.”

The People Like Us campaign will be launched in Llandudno and at the Senedd in Cardiff Bay today when kidney patients will present health minister Edwina Hart with a 60-page dossier highlighting the crisis in renal care.

Kidney dialysis patients are receiving treatment in a broom cupboard because of the pressure on Morriston Hospital's renal unit, according to patients.They have branded the windowless, old walk-in cupboard, attached...

PATIENTS OUTRAGED AT 'CUPBOARD CARE'

LIZ PERKINS

HEALTH REPORTER

ELIZABETH.PERKINS@SWWMEDIA.CO.UK

09:00 - 20 September 2007

Kidney dialysis patients are receiving treatment in a broom cupboard because of the pressure on Morriston Hospital's renal unit, according to patients.They have branded the windowless, old walk-in cupboard, attached to the main service as "unsafe and claustrophobic."Around 190 patients rely on dialysis services at the hospital site.And campaigners from the Kidney Wales Foundation say there is only a ward within Morriston and an annexe building in the car park for their care.Bosses at Swansea NHS Trust have denied claims that they have converted a cupboard into a makeshift dialysis station.

WESTERN MAIL Calls for action on kidney facilities

icWales - Calls for action on kidney facilities click for full story

WESTERN MAIL - 20 SEPTEMBER 2007

Calls for action on kidney facilities
Sep 20 2007
by Madeleine Brindley, Western Mail

PATIENTS are having to travel hundreds of miles a week to have life-saving treatment in shabby dialysis units.
In one major hospital patients with kidney failure are having dialysis – which can take up to three hours or more – in a portable cabin with just one radiator.
In another Welsh hospital an old storeroom is used as a makeshift “dialysis station” for two people – patients said the facilities are “unsafe and claustrophobic”.
The Kidney Wales Foundation today exposes the “third world” conditions patients are being treated in as evidence of the crisis in renal care. The charity, backed by the Welsh Kidney Patients Association, is launching a major campaign to improve treatment for the hundreds of patients with kidney failure.

LAUNCH 20 SEPTEMBER 2007

At 4pm on Thursday the Campaign will be launched by the Leader Allison John presenting Edwina Hart AM with the Campaign document at the National Assembly for Wales, Cardiff Bay.

Kidney Patients will be present with Trustees of Kidney Wales , Welsh Kidney Patients Association , AMs from all parties, representatives of the BMA and other distingushed guests.

Press will feature the Campaign . See ITV News , BBC Wales Today , Western Mail ,Western Telegraph, Evening Post, Daily Post and South Wales Echo.

To reserve your copy of the document e mail allison@kidneywales.com Please indicate short or long document.

NEWS NEWS Read Melanie Wager 's PLUS blog http://www.melsplusdiary.blogspot.com/

ALLISON JOHN SHARES THE PLus CAMPAIGN WITH WELSH RUGBY STARS AS THEY PREPARE TO START THIER OWN WORLD CUP CAMPAIGN

Allison John sharing the Campaign with Welsh Rugby Players before the start of World Cup Campaign. Allison centre with from left to right Gethin Jenkins , Captain Gareth Thomas, Martin Williams and Jonathan Thomas.

The People Like Us Campaign will coincide with the Rugby World Cup. Allison decided to share her own campaign with the Welsh Team. Allison's partner Nathan is a New Zealander and same goes for Campaigner Andrea Evans whose boyfriend is also from NZ.

Photograph courtesy Stephan Lewis Photography. Many thanks to Moss Bross for allowing Allison to meet the Rugby Stars.

"I was delighted to meet some of the players before they flew to France to start the World Cup. I'm very proud and patriotic about Wales and have followed Welsh rugby since I was a little girl. My brother Barry is even named after Barry John the Welsh rugby player of the seventies. As a family we are avid supporters. My boyfriend Nathan, from New Zealand is a huge rugby fan and is obviously looking forward to the World Cup with the All Blacks being tipped to win!! "

Allison

kidney patient guide - contents

kidney patient guide - contents

PRESUMED CONSENT- ONLY COMMON SENSE

Here's how the system would work under Presumed Consent:


An individual who does not want to be an Organ Donor would have to "opt-out" by entering their name on a National Registry maintained by UKT - the same organisation that now keeps the UK National Waiting List ORGAN DONATION REGISTER of transplant candidates. When a person died under circumstances that would permit Organ Donation, a search would be made of the Registry. If their name did not appear in the Registry, it would be presumed they had consented to be a Donor. While the family would be advised of this information, their consent would not be required, and no one would be allowed to override the donation.

+

EMINENTLY SENSIBLE SAYS ASSEMBLY MEMBER

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National Assembly for Wales Member Jenny Randerson (Lib Dems) who supports the Campaign said:

“Presumed organ consent is an eminently sensible solution to a very serious problem which has resulted in many deaths. Most people (when asked) wish that on death their organs should be used to save the lives of others. However, the majority of people have not opted in to the current system. Under presumed organ consent if anyone is unhappy with their organs being used they would be perfectly entitled to opt out. The result would be that everyone who wanted their organs put to good use in the event of their death would get their wish unlike now.“Under the Welsh Assembly’s new powers I will continue to try and introduce a law to Wales that would allow us to have presumed organ consent and save lives.”

Here's why we think Presumed Consent would be better:

1.Presumed Consent enhances the right of an individual to decide what will happen after they die.

2. Presumed Consent works well in other countries where it has been instituted - Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore - where the opt-out rate has been around 2%.

3.Tracking the 2% who don't wish to be Donors would be easier than tracking the 98% who do wish to be Donors or don't care.

4.Presumed Consent preserves the Welsh spirit of unselfishness and altruism.

5.Presumed Consent would remove the burden of making a decision about Organ Donation from families already dealing with the traumatic death of a loved one.

6.Presumed Consent could be implemented quickly, easily, and relatively inexpensively by working within the framework of the existing Organ Donation system.

7.Presumed Consent could have a dramatic impact on the number of organs available for transplant, significantly reducing the Waiting List and the number of deaths on the waiting list, as well as relieving the pain and suffering of thousands.

Spain
The views of relatives are sought and they can refuse consent
Spain has the soft opt-out system, where even if the person hasn't themselves opted-out of donation, the views of relatives are sought and they can refuse consent. About 20 to 24 per cent of relatives refuse, compared with currently 40 per cent in the UK. Spain has a higher number of donors than the UK and has had a year-on-year increase in organ donations for the past ten years.
But the country also has a higher number of road deaths and a system where relatives of potential donors are always approached by specially trained staff. So even if the system was changed, the level of organ donation in the UK may not reach that of Spain.
The Director of the National Transplant organisation in Spain, Dr. Matesanz, says the lesson of the Spanish experience is that it makes a huge difference if you have a person responsible for identifying possible organ donors in hospitals, not whether you change the system to opt-out.

Austria

The number of kidney transplants performed was nearly equal to those on the waiting list
Austria has the hard opt-out system which means that the views of relatives aren't taken into account at all and they can't refuse consent. After Austria passed a presumed consent law in 1982, their donation rate quadrupled and by 1990 the number of kidney transplants performed was nearly equal to those on the waiting list.

Belgium
In Belgium in 1985 the kidney donation rate was 20 per million population, but this jumped to 37.4 per million just three years later after a change in the law to presumed consent.


A different policy operates in the US, which tries to ensure that relatives are always asked about the possibility of donation. This policy is called 'Required request' and is defined "that it shall be illegal as well as irresponsible to disconnect a ventilator from an individual who's declared dead following brain stem testing without first making proper enquiry as to the possibility of that individual's tissues and organs being used for the purposes of transplantation."
This policy means opportunities for donation aren't missed - as they can be in the UK.
The latest report from an on-going audit by UK Transplant carried out in 2003 to 2004 found that in 15 per cent of cases there was no record that the relatives had been approached to give their agreement to organ donation.
The introduction of required request in the US saw an initial increase in organ donation, but this has since declined.