Monday, December 29, 2008

Businessman Tim donates a kidney to save a complete stranger | Mail Online

Businessman Tim donates a kidney to save a complete stranger | Mail Online

Businessman Tim donates a kidney to save a complete stranger
By Mail On Sunday Reporter
Last updated at 11:34 PM on 27th December 2008


A businessman has saved the life of a stranger by giving her one of his kidneys.
Tim Rowles, 46, from Leiston, Suffolk, heard of 43-year-old Wendy Adams’s desperate need for a transplant as her one kidney was failing – and realised they shared the same rare O-negative blood group.
Tests revealed that he had the right tissue match to be a donor for the clothing designer, who grew up in nearby Martlesham, before emigrating to Holland.

Thursday, December 25, 2008

The small matter of a kidney donation - Times Online

Cassandra: the small matter of a kidney donation - Times Online click for full story

I’ve been reading a lot lately about kidney problems. Every other week it seems there’s a story about someone with kidney disease. Anthony Kiedis from the Red Hot Chili Peppers had some trouble but now it seems he’s OK. There was also a story about two best friends – one who needed a kidney, the other who donated. That’s got to put a strain on a friendship.

Wednesday, December 24, 2008

Dan does London Marathon for Kidney Wales

Dan's Diary - December 2008

Dan Cherry has been granted the one available Kidney Wales Foundation running spot in the 2009London Marathon.


Dan said "... I finally signed the forms last week and received an email from the organisers to tell me that there is no backing out and that on April 26th 2009 I will be on the start line for one of the world's most famous long distance races the LONDON MARATHON. It is a great feeling to know that I can make a small difference to the charity with my efforts and I just hope that I do not put on too much weight over Christmas and hamper my bid to complete the course!"

Dan does London Marathon for Kidney Wales

Dan's Diary - December 2008

Dan Cherry has been granted the one available Kidney Wales Foundation running spot in the 2009London Marathon.


Dan said "... I finally signed the forms last week and received an email from the organisers to tell me that there is no backing out and that on April 26th 2009 I will be on the start line for one of the world's most famous long distance races the LONDON MARATHON. It is a great feeling to know that I can make a small difference to the charity with my efforts and I just hope that I do not put on too much weight over Christmas and hamper my bid to complete the course!"

Calendar boys bring new hope

Calendar boys bring new hope


AMMANFORD husband Chris Dark won’t have to worry about finding wife Melanie the perfect Christmas present this year — he’s already given her the gift of life.
Thanks to pioneering technology, the fit-as-a-fiddle 46-year-old was able to donate one of his kidneys to his seriously ill wife.
Chris runs the Ammanford and District Kidney Wales Committee with Melanie, also 46, who was diagnosed with kidney failure when she was just 17.
A successful kidney transplant in her 20s gave her a new life, but when it began to fail after 13 years she was placed back on the waiting list for more than a decade.

Sunday, December 21, 2008

Watkins is a Prophet for charity - WalesOnline

Watkins is a Prophet for charity - WalesOnlineclick for full story

Ian Watkins headlines Kidney Wales Foundation’s New Year’s Eve Charity show at Cardiff University on January 31. Tickets cost £20 from 0871 2200 260.

Friday, December 19, 2008

Kidney op man is on the crest of a wave - WalesOnline

Kidney op man is on the crest of a wave - WalesOnline

FOR the first time in nearly five years Mark Schofield is looking forward to a normal Christmas with his family and friends, able to eat what he wants and have a festive tipple with his neighbours.

And the cause for his celebration is that after a long wait Mark has received a kidney transplant, an operation that released him from the shackles of his daily dialysis routine.

The father of two and former UK surfing champion said one of the highlights of his recovery in the past 10 months was the first time he got back on his surfboard, with his 17-year-old son George next to him on the waves during a family holiday in Ireland.

Mark, 45, had been on dialysis every day for three hours since December 19, 2003, when his first kidney transplant, resulting from a donation by his mum Jean, failed after 13 years. Forced back on to dialysis, Mark waited for a new opportunity and a second chance with another transplant but as the years rolled by he feared that might never happen.

“I was giving myself dialysis at home and that affected the whole family, three hours every day, which means 730 injections a year, to clean my blood. Looking back, I started to go downhill.”

Mark became so desperate he embarked on a “transplant tourism” trip to the Philippines last year to try to buy a kidney from a live donor but the trip failed when no match was found.

He now has nothing but praise for the NHS, which came up with a kidney transplant match for him in February this year.

Monday, December 8, 2008

Husband gives his kidney to wife

Husband gives his kidney to wife
Dec 8 2008 by Madeleine Brindley, Western Mail

Melanie Dark has just received the Christmas present of a lifetime... her husband Chris gave her his kidney. Health Editor Madeleine Brindley spoke to the couple

WHEN her first kidney transplant failed 11 years ago Melanie Dark faced a lifetime on dialysis.

A combination of numerous blood transfusions, the failed transplant and giving birth to her daughter Kelly, meant that her body would reject any new kidney which was less than a perfect match.

But Melanie is now recovering after her husband Chris donated her a kidney, even though they do not share the same blood group.

She is the first woman in Wales and only the fourth patient in the nation to undergo treatment which allows non-compatible kidneys to be transplanted.

Speaking from her home near Llanelli, the mother of one, who was discharged from hospital last week, said: “The chances of me having another cadaveric kidney were very low because I would have needed such a good match.

“I was called up twice in the last 11 years but the transplant never went ahead because my body would have rejected the kidney immediately.

“I thought I was going to be on haemodialysis forever – that was really hard, it was devastating.”

Melanie’s kidneys were destroyed by a disease and she had her first transplant in 1984 at the age of 21. It began to fail 10 years later and she was forced back on to dialysis in 1997.

“Chris had been on about donating me a kidney for years and years but we were told that it wouldn’t work so we put it on the back burner.”

Chris, 46, said: “There was no sign of Mel having a transplant because she had problems with her antibodies and her blood, making it more and more difficult for her to have a kidney from a donor who had passed away.

“She has been on a [haemodialysis] machine for so many years – she was one of the lucky ones and had a machine at home – but she still had to put needles in herself every day.

“When this new machine came along which could purify the blood and get rid of the negative antibodies, I thought that we had to go for it.

“When you watch your loved one suffer you will try and do anything you can to help them.

“I’m no hero but when you watch your wife suffer and there is something that comes along that can give you hope you want to do it.

“When that option came up I jumped in with both feet. I wanted to go for it, although Mel was a bit worried.”

Melanie said: “Up until the last minute I was more concerned about Chris’ wellbeing – if something had gone wrong with him during the operation I would never have forgiven myself.

“I was still telling him up until the last moment that he could say no because I was really worried about him.

“But he said it was his wish and he wanted to do it because it would benefit both of us.”

The University Hospital of Wales in Cardiff started carrying out non-blood-group-compatible live kidney donations earlier this year – the process has successfully been used elsewhere in the world.

To ensure that the recipient’s body does not reject a kidney donated by someone with a different blood type, they must undergo treatment to remove harmful antibodies from their blood stream before the operation.

Patients are given up to five plasma exchanges before surgery and they have to take additional immune system suppressing drugs after the transplant operation.

It is hoped that the process will boost the number of live kidney donations that can be carried out every year.

Following the transplant Melanie has been able to go to the toilet properly for the first time in more than 11 years and she no longer has to severely limit the amount of fluid she can drink.

“The kidney has given me an instant new lease of life – I don’t think I’ve really come to terms with it yet.

“This is the best Christmas present I could ever have wished for.”

Chris added: “They give 10 to 11 years for a normal transplant but hopefully it should be longer because of the live donation, even though we weren’t compatible.

“If we can get another 10 to 15 years then we will be very pleased.”

Sunday, December 7, 2008

What the NHS can learn from organ donors

What the NHS can learn from organ donors
By Margaret McCartney

Published: December 6 2008 00:27 | Last updated: December 6 2008 00:27

As an unschooled observer of the money markets, I have been struggling in recent months to understand what anything is actually worth. In healthcare, there is a similar problem, though it makes for rather less exciting headlines. All NHS procedures have to be costed to the last penny, and reported on in “completed care episodes”. But just like financiers, healthcare professionals can’t put an exact price on everything.

Blood, for example, is a commodity given free of charge by people willing to sacrifice time and comfort in order to make a significant difference to someone else. Bone marrow is another “gift”, donated by those who know they will not be repaid financially for being inconvenienced. And then there are the gifts given in the aftermath of death: corneas, kidneys, livers, skin, hearts… all capable of transforming a stranger’s life.

A living person can donate a kidney, too, if the genetic match is close enough. The donor need not be a relative – a spouse or friend can also volunteer. And now, if enough “couples” of kidney patient and willing donor can be found, then they, if not genetically compatible themselves, can be “paired” with other couples, who can then “swap” kidneys between each other. Altruistic kidney donation, too, has been recently approved in the UK. This means that someone can donate a kidney to a complete stranger, simply because they want to.

Altruism fuels some parts of the NHS, but in others it has been squeezed out. In the past, people would unthinkingly stay late to organise or fix things that would benefit others, for which they would not be paid. This boosted camaraderie and morale, both of which served patients. Now, working life is rigorously accounted for, and junior doctors must go home on time.

Yet altruism is not just good for the recipient, it can also be good for the donor. Giving means that one feels involved and responsible; it means that one has a role worth playing. Blood and bone marrow donors know this, as do kidney donors and families of posthumous donors. The altruism commonly required a generation or two ago – to risk one’s life in the face of disease or war – has all but evaporated. But there is still a place for it, and it is worth a lot.

Margaret McCartney is a GP in Glasgow.

margaret.mccartney@ft.com

Saturday, November 22, 2008

NHS Wales News - Health Minister opens new kidney dialysis unit in Cardiff

NHS Wales News - Health Minister opens new kidney dialysis unit in Cardiff

A new kidney dialysis unit, which will increase capacity and improve care for patients, will be officially opened by Health Minister Edwina Hart today [Thursday, 20 November] in Cardiff.


Previously, kidney dialysis patients had access to 16 dialysis stations at outdated facilities at the University Hospital of Wales, Cardiff.


Initially, the new unit opens with 18 dialysis machines, rising to 20 by December and will increase to 24 by March next year, with room to expand.


Roy J. Thomas, Chairman of the Kidney Wales Foundation and Donate Wales campaign, said: "We are fully committed along with the Welsh Assembly Government, to world class renal facilities such as the new dialysis unit in Cardiff across the whole of Wales. Transplant and dialysis treatments in Wales are improving under this government and we are working in partnership to ensure this continues and that more kidney patients and their families in Wales benefit."

Generosity of Donors

Generosity of organ donors
Nov 21 2008 by Our Correspondent, South Wales Echo

AS someone who knows first hand how it feels to be given a second chance thanks to the generosity of a donor and to be on the waiting list for a third time needing a kidney transplant, I was disappointed to see the Donor Taskforce in England has rejected the introduction of presumed consent.

Here, the Welsh Assembly Government is taking the lead in addressing the shortage of organ donors and helping save lives by embarking upon a wide-ranging public consultation on presumed consent.

Soft presumed consent still means the family is very much part of the consultation at the time of their loved one’s death and their permission for donation sought – it does not mean organs are taken without permission.

If we have this system in Wales and the rest of UK then many, many more lives can be saved and transformed thanks to the gifts of donors.

Melanie Wager, St Athan

Tuesday, November 18, 2008

Allison wins the ultimate accolade (From Western Telegraph)

Allison wins the ultimate accolade (From Western Telegraph)

Allison John, aged 30, has suffered from health problems since birth and has cystic fibrosis. She has survived four major transplants; in her early teens she had an 11 hour liver transplant and a heart and lung transplant. Her most recent operation came in 2006, when she was diagnosed with kidney failure and was donated one of her father's kidneys.

During the course of her most recent treatment Allison became an ambassador for the Kidney Wales Foundation. Among other things she addressed the House of Lords on presumed consent and helped raise £10,000 as part of the charity's Walk for Life.

Cardiff University Gair Rhydd talks to Allison John

Gair Rhydd

I’m now 30 years old and I was born with Cystic Fibrosis. The main problem with Cystic Fibrosis is that it causes progressive damage to the lungs. However, about 10% get liver disease too, and unfortunately I was one of them. By the time I was 15 my liver was cirrhosed and I needed a liver transplant.

Monday, November 17, 2008

Evening News 24 [text only news and sport]

Evening News 24 [text only news and sport]

A man whose life was saved by a kidney transplant has backed calls urging the government to change the law on organ donation even though a panel of experts has rejected the idea of "presumed consent".

Earlier in the year the government backed a movement towards presumed consent - which would see everyone put on the organ donors register unless they choose to opt out - but a new report rules out the scheme.

The UK Organ Donation Taskforce said assuming organs could be used unless people opted out was unlikely to boost donation rates.

BBC NEWS | Health | Presumed consent 'not ruled out'

BBC NEWS | Health | Presumed consent 'not ruled out'

Gordon Brown is not ruling out a change in the law on organ donation even though a panel of experts has rejected the idea of "presumed consent".

The UK has one of the lowest organ donation rates in Europe.

There are currently around 8,000 people in the UK who need an organ transplant but only 3,000 operations are carried out each year.

Every year, 1,000 people in the UK die after waiting for a transplant.

Currently, people must sign up to the organ donor register - or their families must agree - before their organs can be used.

BBC NEWS | Health | No Surprise English Donor 'opt-out' proposal rejected

BBC NEWS | Health | Donor 'opt-out' proposal rejected

It is not a surprise that the English/UK Taskforce has ignored 1,000 patients who die waiting for a transplant every year in the UK.The lack of imagination and failures in the English NHS should not be read as the same in Wales or Scotland who are prepared save lives and not give excuses as to why this change cannot be implemented.The Taskforce was packed with those against. Anyone who was for was ignored or not invited.

Any change to the system would involve amending the Human Tissue Act of 2004.

Research by the Intensive Care Society suggests many specialists are worried that such a move would damage the trust between patients and doctors. This is an "image" issue.

A report recommending a radical overhaul of the UK organ donor network in a bid to double the number of organs available for transplant, has already been published by the Organ Donor Taskforce, and is being implemented in Wales.

The latest recommendations on presumed consent are not binding and the government in Westminster,Wales Scotland and NI who could decide to press ahead with changes to the legislation.

Sunday, November 16, 2008

Survivor Allison wins Cosmo award - WalesOnline

Survivor Allison wins Cosmo award - WalesOnline


Allison John from Cardiff South Wales who had four organ transplants has won Cosmopolitan’s award for the Ultimate Survivor.

Allison John, of Roath, Cardiff, collected the prize at The Cosmopolitan Ultimate Women of the Year Awards 2008.

Allison is the first person in the UK to survive four organ transplants.

She is now training to be a doctor and devotes her spare time to charity. In addition to raising £100,000 to build a local transplant unit, Allison is working with the Kidney Wales Foundation to raise awareness for the organ donor register

Saturday, November 15, 2008

Cardiff scientists study acute infection in end-stage kidney disease patients

Cardiff scientists study acute infection in end-stage kidney disease patients

Cardiff scientists study acute infection in end-stage kidney disease patients
Grant enables new research study to get underway at Cardiff University which could see a decrease in the rates of treatment failure among patients with end-stage kidney disease
A new research study underway at Cardiff University could see a decrease in the rates of treatment failure among patients with end-stage kidney disease.

Experts in the Infection, Immunity and Inflammation Interdisciplinary Research Group at the School of Medicine have secured more than £230,000 ($375,000) from the 'Renal Discoveries - The Baxter Extramural Grant' program, to investigate the potential to safeguard susceptible patients against serious problems caused by bacterial infections.

Wales organ transplants row - WalesOnline

Wales organ transplants row - WalesOnline

WALES could still seek a change to the law on organ donation despite reports of a UK government task force rejecting the idea of presumed consent.

Campaigners told the Western Mail that presumed consent – the assumption that people support donating their organs after death unless they have previously opted-out – is the most effective way to boost the numbers of organs available for donation.

Brave Danni met up with kind-hearted music hero - WalesOnline

Brave Danni met up with kind-hearted music hero - WalesOnline

DANNI Tilley rubbed shoulders with new rock royalty as she met Lostprohets lead singer Ian Watkins.

The 14-year-old shared a cuddle and a chat at the University Hospital of Wales, in Cardiff, as the rock star was named the Wales Kidney Foundation’s ambassador for young people.

Fan Danni, from Waenheulog, Nantyglo, is hoping that her dad David will be able to give her his kidney in the new year.

The teenager suffered kidney failure in 2007 and has been undergoing 10-hour nightly dialysis sessions since. She was put on the transplant waiting list in September.

Thursday, November 6, 2008

Explaining renal treatment to people with learning disabilities

Explaining renal treatment to people with learning disabilities click


"As a clinical team, we recognised there was a lack of information to inform people with learning disabilities who have chronic kidney disease (CKD) about the many treatments and interventions available. In the past we had tended to focus on relatives and carers to give information and take decisions, undermining possible patient involvement.

We wanted to improve our communication with this patient group, recognising that we could enable them to participate more fully in decision-making."

Monday, November 3, 2008

Transplant boy inspires Cardiff school reunion - WalesOnline

Transplant boy inspires Cardiff school reunion - WalesOnline

A BRAVE eight-year-old boy has inspired his mum and her friends to reunite their old school pals for charity.

Sharon Breeze, 40, from Llanedeyrn, Cardiff, is organising a reunion for people who attended Cardiff’s Lady Mary High School between 1976 and 1985, to raise money for the Kidney Wales Foundation.

The party has been inspired by Sharon’s son George, who underwent a vital kidney transplant at the age of five.

Sharon and her friends, Maggie Powell and Debbie Colley, nee Heppell, thought holding a reunion for the Cyncoed school, which has now closed, would be a great way to raise money to help others like George.

Having been born with dyspraxia, a condition which affects development, the bubbly youngster has always had to work harder than most children to lead a normal life.

And when a routine blood test identified George’s kidney problems in 2005, Sharon and her husband Martin, 43, feared the worst. She said: “I thought he was going to die. I just thought it was the end of the world.

“Then I started researching it and I heard stories about people who had transplants and went on to live normal lives. Knowledge is power and that helped me through.”

Sharon said her son initially found it hard to understand his condition.

“The only way we could describe it to George was by telling him his battery was running out,” she said. “He seemed to understand that because when his toys’ batteries were low they would stop working.”

In March 2006, Martin donated a kidney to his son. Almost immediately after the transplant, Sharon saw the colour rush to her son’s cheeks.

The fundraising reunion is at St Peter’s Hall in Roath, Cardiff, from 7.30pm on Saturday, November 15. Tickets cost £5. For details, call Sharon on 07970 780288.

Sunday, November 2, 2008

Dan runs in aid of Kidney Wales (From Western Telegraph)

Dan runs in aid of Kidney Wales (From Western Telegraph)

Dan runs in aid of Kidney Wales
10:00am Saturday 1st November 2008



Dan Cherry successfully completed the Cardiff half marathon recently.

This is the first leg in his build-up towards running the London marathon next spring and raising further vital funds for Kidney Wales who have been Glamorgan’s official charity for 2008.

There is a very special and personal reason why the 28-year-old, who is now a vital member of Glamorgan Cricket’s operations department, supports the charity.

Wednesday, October 29, 2008

Lostprophets star’s kidney concert - WalesOnline

Lostprophets star’s kidney concert - WalesOnline


LOSTPROPHETS lead singer Ian Watkins will headline an all-star one-off concert on New Year’s Eve.

The gig has been organised by the 31-year-old from Pontypridd to support the work of the Kidney Wales Foundation, as he is today named the charity’s new ambassador for young people.

Watkins will urge fans at the concert to sign the NHS Organ Donor Register in an attempt to increase the number of organs available for transplant.

He became involved with the charity after his mum Elaine had a kidney transplant last year.

And he was inspired to headline the concert, which will take place at Cardiff University’s Great Hall, after being contacted by Lostprophets fan and Kidney Wales Foundation volunteer Alun Reynolds, who is recovering from kidney failure.

Saturday, October 25, 2008

Stepson donates a kidney to save his stepfather - WalesOnline

Stepson donates a kidney to save his stepfather - WalesOnline


Oct 23 2008 South Wales Echo

IF you ask Ian Robst why he offered to donate a kidney to his stepdad David Britton, he modestly says that he wanted to save a life.

The gentle giant and dad-of-two said: “It’s nice to save a life in this world. You see so much on the news and in the papers and it’s all war and famine and you wonder if there’s anything else. When you look at the bigger picture if I can help someone, then it’s better than taking a life.”

Wednesday, October 22, 2008

PUBLIC DEBATES ON PRESUMED CONSENT ANNOUNCED

Nationwide discussion to explore whether Wales should be the first UK country to introduce an ‘opt-out’ organ donation system
The dates for a series of debates to gather public opinion on whether Wales should become the first UK country to introduce a system of presumed consent have been announced today.

Welsh Assembly Government Health Minister Edwina Hart said the purpose of the debates was to gauge views on whether the Assembly Government should seek a legislative change in order to increase the number of organ donors.
A discussion document will also be issued and published on-line by the Assembly Government this Friday to invite wider comment from the public. Respondents will be able to use a website to electronically indicate their preference of different systems of organ donation consent.

Telephone interviews with a representative sample of the population will also be carried out.

The Community Health Councils in Wales are inviting members of the public to attend the debates. Those interested in attending are being asked to register rather than just turn up to ensure a broad representative sample of the population attends each debate.

The dates, times and locations for the public debates are:

o Cardiff – Monday 27 October, Taff Conference Centre, Sophia Gardens, Welsh Institute of Sport, from 6:15 pm – 9:00 pm;

o Brecon – Tuesday 28 October, Bishop Meadow Hotel, Brecon, from 12:00pm – 3:00 pm;

o Haverfordwest – Wednesday 29 October, Nant-y-Ffin Hotel, Llandissilio, from 10:00 am – 1:00 pm;

o Caernarfon – Friday 31 October, Siambr Dafydd Orwig, Gwynedd Council, from 1:00 pm – 4:00 pm;

o Aberystwyth – Monday 3 November, Parc Lodge Hotel, Parc y Llun, from 7:00 pm – 10:00 pm;

o Wrexham – Tuesday 4 November, Nick Whitehead Theatre, Main Foyer, Glyndwr University, from 6:30 pm – 9:00 pm;

o Newtown – Thursday 6 November, Ladywell House, Newtown, from 10:00 am – 1:00 pm; and,

o Anglesey – Thursday 13 November, Main Chamber at YMCC offices, Llangefni, from 6:00 pm – 9:00 pm.

Because of a shortage of donors, 150 people have died in Wales in the last five years waiting for a transplant.
Edwina Hart said:
“Around 500 people in Wales are currently waiting for an organ transplant, but with a desperate shortage of donors many face the reality of having to wait years and the possibility they may even die while waiting.

“Although the Assembly Government is already funding campaigns to increase the number of donors, a shortage of organs still remains so it is my belief that we should examine more closely the issue of introducing a system presumed consent.

“Last month, I rejected the recommendation from the National Assembly’s Health, Wellbeing and Local Government Committee that Wales should not pursue a legislative change at this time, because I did not believe that the Committee’s report adequately reflected the evidence it received in relation to presumed consent.
“However, I recognise that any changes to legislation would require further wide-ranging consultation and testing of public opinion as this is a sensitive and emotive issue.

“That’s why I’m announcing this series of debates and publishing a discussion paper for those that are unable to attend but would still wish to comment.
“Once there is clear understanding of public opinion in Wales on the issue of presumed consent, the Assembly Government will consider the need for a legislative change.”

The debates and discussion paper will examine the public’s view of a range of systems such as ‘hard’ and ‘soft’ presumed consent and mandated choice.
The public will also be asked whether certain organs should be excluded from any new system.

To register interest in attending the debates, people should contact Gwenllian Stifin at the Board of Community Health Councils on 0845 644 7814 or enquiries@waleschc.org.uk

The discussion paper can be obtained from Friday at www.wales.gov.uk/health which includes a link to a site where people can indicate their preferred system for organ donation.

Notes:
1. Unlike the current ‘opt-in’ system, presumed consent is an ‘opt-out’ system where it is presumed that your organs are available for transplant to those in need of them unless you have formally registered the view that you do not wish to have them removed after death.

A distinction is often drawn between ‘soft’ and ‘hard’ versions of an opt-out system. In the ‘soft’ version relatives are allowed to veto the removal of the organs of their relative, and in the ‘hard’ version, this veto is not present. The soft version can be found in Belgium and Spain, and the hard version in Austria. Another version of a hard opt out system is one that does not cover some groups. With this system doctors can remove organs from every adult who dies – unless a person has registered to opt out or the person belongs to a group that is defined in law as being against an opt-out system, an example of this is Singapore where Muslims chose to opt out as a group.

In a system of mandated choice, all adults would be required by law to state whether or not they are prepared to donate their organs after death. This could be done when registering with a GP, completing a tax return, or at some other formal occasion.

2. The full response by the Welsh Assembly Government’s to the Health, Wellbeing and Local Government Committee Inquiry can be found at www.wales.gov.uk/publications/

3. The Health, Wellbeing and Local Government Committee’s inquiry was published last July and can be accessed at: http://www.assemblywales.org/bus-home/bus-committees/bus-committees-third1/bus-committees-third-hwlg-home/bus-committees-third-hwlg-report.htm

Friday, October 17, 2008

Healthcare Equipment and Supplies

Healthcare Equipment and Supplies


Edwina Hart announced spending on chronic diseases will be more than doubled next year to almost £11m and rising to nearly £13m in 2010-11. This will include £4.1m in 2009-10 and £3.5m in 2010-11 for improving renal services for kidney patients.

Friday, September 26, 2008

PEOPLE LIKE US COUNCIL LAUNCHED BY EDWINA HART


The People Like Council was launched on Tuesday 23 of september 2008 by the Health Minister Edwina Hart AM with Allison John the Chair and Roy J Thomas of KW.

Allison outlined the success of the PLUS Campaign which led to the Council and outlined the success with a new dedicated transplant unit announced; more diaysis stations being planned across Wales;a successful organ donation campaign Tell a Loved One ongoing; and consultation into presumed consent for Wales.

The Minister Edwina Hart praised patients in setting up the Council.

Present was the Chief Medical officer Tony Jewell and Deputy Mike Harmer.

Tuesday, September 23, 2008

WESTERN MAIL SATURDAY 20th of SEPTEMBER 2008 VIEWS FROM THE EDITOR ON PRESUMED CONSENT

EDITORIAL WESTERN MAIL VIEWS OF THE NEWSPAPER AND PEOPLE LIKE US COUNCIL

THE question of whether we should opt out of donating our organs should we die remains a divisive one, as the political developments we report today demonstrate. The Assembly’s health committee rejected the idea, preferring to stick with the current system where people have to opt in and sign up for a donor card.
The committee decided switching the rules around would be a “distraction” from efforts to encourage more people to sign up.

Its report also suggested that public opinion was not ready to make the switch – something that seems unlikely.

Yet not every AM on the committee was convinced by this line of argument, and it seems Health Minister Edwina Hart is open to the idea of a change in policy. She said yesterday she would not rule out asking for the powers to be transferred from London to Cardiff Bay so Wales could make its own decisions on the issue.

Her response to the health committee sensibly pointed out the report did not reflect the range of different views on the question. In short, the health committee ducked the issue; it would be better to be bold, and take a position that says Wales should lead the way.

The devolution settlement allows Ministers to ask Westminster for extra powers; it should do so in this case, and a decision on whether Wales should be the first part of the UK to have a system of presumed consent in organ donations should be made by the Assembly. That decision should come in a free vote of all 60 AMs, and not be decided by a Minister or a health committee that is itself split on the issue.
We think presumed consent is a simple and sensible move forward. It’s clear that the present system does not work well enough; not enough people carry donor cards, and the waiting lists for transplants goes up and up.

Changing the policy costs nothing, save for a necessary public information campaign, and has the potential to make a huge difference to thousands of families.
Far too many people are suffering the distress of seeing loved ones fighting for life while a desperate search for donors goes on – surely we can rewrite the rules and reduce their pain? There are now 501 people waiting for a transplant, the highest ever number. With the figures heading in the wrong direction, the time is right for radical action.

Some will object that the state has no place in automatically claiming rights over a person’s body. But this would be presumed consent, not compulsory donation. Those who feel strongly can easily opt out, and some doubtless will.
But that isn’t an argument for doing nothing. The present system doesn’t work well enough, and causes unnecessary suffering. The Assembly Government should seek the power to do something about it – and show it’s brave enough to lead the way.

Monday, September 22, 2008

Kidney transplant father backs reform - WalesOnline

Kidney transplant father backs reform - WalesOnline

Mr Schofield travelled to the Philippines in June 2007 in the hope of buying a new kidney after an earlier transplant had failed.

The trip was unsuccessful but he underwent a kidney transplant at the University Hospital of Wales in February, allowing him to return to work and resume surfing.

The father-of-two said: “Presumed consent is a great thing, but the way it has been put across means many people think they will be giving everything away.

“No-one will be asking anyone to do anything different if we move to an opt-out system – people will still be able to live their lives as fast as they want, but if anything happens they will have another chance to help someone else."

Sunday, September 21, 2008

TEENAGER Robert Edwards is living proof of the amazing gift of organ donation. - WalesOnline

TEENAGER Robert Edwards is living proof of the amazing gift of organ donation. - WalesOnline


TEENAGER Robert Edwards is living proof of the amazing gift of organ donation.
Sep 20 2008 by Katie Bodinger, South Wales Echo

The 13-year-old, who was on dialysis 10 hours a night before the operation two weeks ago, is now full of energy.

After a wait of more than two years, his parents, Paul and Jayne, are understandably overjoyed that their son can look forward to being a normal youngster.

Before, their lives were on hold as they anxiously waited for the life-saving call to come.

There is a desperate need for more organ donors, as Robert’s plight shows.

Let’s hope his case will inspire more to tell relatives that if the worst happens they would want their organs to save the lives of others.

Lib Dem’s welcome for donor report - WalesOnline

Lib Dem’s welcome for donor report - WalesOnlineLib Dem’s welcome for donor report
Sep 20 2008 by Katie Norman, South Wales Echo

LIBERAL Democrat health spokeswoman Jenny Randerson has given the “strongest possible welcome” to Health Minister Edwina Hart’s rejection of the Health Committee’s report on presumed consent for organ donation.

Saturday, September 20, 2008

Wales could lead UK in presumed consent for organ donations - WalesOnline

Wales could lead UK in presumed consent for organ donations - WalesOnline

WALES could yet become the first country in the UK to change organ donation laws and introduce a controversial opt-out system.

Health Minister Edwina Hart yesterday said she would not rule out a legislative competence order for presumed consent, as she rejected recommendations by the National Assembly’s influential health committee.

Friday, September 19, 2008

Wales organ donation consent plan - WalesOnline

Wales organ donation consent plan - WalesOnline

Wales organ donation consent plan
Sep 19 2008 By Madeleine Brindley

WALES could become the first part of the UK to switch to a system of presumed consent for organ donation as Health Minister Edwina Hart today dramatically rejected an Assembly committee report.

The National Assembly's health committee decided that it would not call for such an opt-out system earlier this year because it would "distract" from the need to increase the number of organs available for donation.

But Mrs Hart today said that the receommendation is out of step with public opinion and said the Assembly Government will not rule out seeking a legislative competence order to introduce presumed consent in Wales.

BBC NEWS | Wales | Presumed consent on organs backed

BBC NEWS | Wales | Presumed consent on organs backed

A system of "presumed consent" for organ donations may be sought by the Welsh Assembly Government.

Health Minister Edwina Hart has announced that it remains under "active consideration".

She was responding to the assembly health committee's recommendation that ministers should not seek powers to bring in such a system.

Wednesday, August 27, 2008

Derbyshire buys dialysis machine for North Wales caravan park - Daily Post North Wales

Derbyshire buys dialysis machine for North Wales caravan park - Daily Post North Wales

HOLIDAYMAKERS can now receive kidney dialysis treatment at a North Wales caravan park – but only if they’re from Derbyshire.

The portable centre has been set up at Dinlle Caravan Park at Dinas Dinlle, near Caernarfon, by Derbyshire Health Authority.

The park was approached by health officials from the county after they found out many of their patients visited the area on holiday.

Park manager Tom Williams said: “People can now come away on holiday without the restraints of a lengthy time in hospital.”

Saturday, August 16, 2008

Transplant queue rises above 500 - WalesOnline

Transplant queue rises above 500 - WalesOnline

Transplant queue rises above 500
Aug 16 2008 by Madeleine Brindley, Western Mail

THE number of people waiting for an organ transplant in Wales has exceeded 500 for the first time ever.

Official figures from UK Transplant reveal that there are 501 people living in Wales who need a transplant – the majority are waiting for a new kidney.

BBC NEWS | Wales | Transplant list passes 500 mark

BBC NEWS | Wales | Transplant list passes 500 mark

Donate Wales said in the last 20 weeks alone 13 people have died whilst on the waiting list.

Roy Thomas, the charity's chairman, said the figures of 501 on the waiting list underlined why it was "so important more of us who want to help should join the Organ Donor Register".

The charity launched its Tell a Loved One Campaign in May. Since then almost 14,000 have joined the register, but Mr Thomas said more are still needed with only 27% of the Welsh population signed up.

He said: "We would like to say thank you to those that have joined the Organ Donor Register in Wales and told their loved ones about their wishes, but the challenge does not stop there.

"We urge those that want to help to act on their good intentions and sign-up now. It only takes a few minutes to do so and you could save a life one day."

Monday, August 11, 2008

Katherine to start capital’s 10k run - WalesOnline


Katherine to start capital’s 10k run - WalesOnline


Aug 11 2008 by Matt Aplin, South Wales Echo

CLASSICAL singer Katherine Jenkins will start this year’s Cardiff 10k run from Sophia Gardens.

It will be the Welsh star’s first official engagement for the Kidney Wales Foundation as its newest patron.

The September 7 event was first launched in 1985 and has generated thousands of pounds for good causes.

Katherine said: “I’m very proud to be a patron of the Kidney Wales Foundation. To support a cause so close to my heart is very special to me.

“I first became involved with the charity in 2005 when I met brave Zowiann Flood at the Children’s Kidney Centre in Cardiff. She was only 10 at the time and desperately needed a kidney transplant.

“Her bravery was such an inspiration to see and we have been friends ever since.”

Sunday, August 10, 2008

Kidney patients at Derby City Hospital praise new dialysis caravan

Kidney patients at Derby City Hospital praise new dialysis caravan

KIDNEY patients from Derby will soon a get a home from home in North Wales where they can have dialysis treatment while they are on holiday.
Derby City General Hospital has fitted out a static caravan in Caernarfon with dialysis equipment, which patients can use when they are staying in the area.
The caravan, which cost about £50,000 to equip, will be at a caravan site in the town from Monday.
People with kidney problems often have to book holidays up to a year in advance to ensure that a nearby hospital can provide them with dialysis. Now, taking a break could be much easier.
Kidney patient Andrew Redfern, who attends the city hospital's renal unit for dialysis three times a week, said the caravan would transform the way he took a holiday.
"It's a brilliant idea. At the moment, we have to pick where we want to go on holiday, then find out if there is a dialysis unit in the vicinity that can fit a patient in.
"I have just come back from a holiday in Scotland and I could only go because I managed to book a spare place in a dialysis unit up there.
"Having a static caravan available for patients is a brilliant idea because it means we have more of an opportunity to go on holiday. It's fantastic."
Fellow kidney patient Susan Blackshaw echoed his sentiments.
Mrs Blackshaw, who has been having dialysis at home for 26 years, said: "At the moment, when I go on holiday I have to book a place in a hospital up to a year in advance and it can sometimes be a three-hour round trip for my treatment.
"This caravan will mean my family and friends can now come on holiday with me because I will have somewhere to have my dialysis."
The static unit can provide treatment for two patients at any one time and, from September onwards, will at first be open to home dialysis patients who can use the facilities independently.
From next year, the hospital is planning to staff the caravan with nurses from the renal unit for a period of time, giving those who need help with their dialysis the chance to use the service as well.
Carol Rhodes, who works at the hospital's renal unit, said that staffing the caravan would enable up to eight patients a week to use the facility.
She said: "It can often be quite a stressful time for patients who have to go to a new hospital for their treatment but this way, it will be staffed by nurses they already know.
"I think this is something that will

Thursday, August 7, 2008

BBC NEWS | Health | Row over NHS kidney drug decision

BBC NEWS | Health | Row over NHS kidney drug decision

Patients with advanced kidney cancer will be denied four treatments on the NHS under proposals from the government's drugs advisory body.

The drugs - bevacizumab, sorafenib, sunitinib and temsirolimus - do not offer value for money, according to draft guidelines for England and Wales.

Monday, August 4, 2008

Families concern over Presumed Consent - missed opportunity

We have just been inundated with concerns about the failure to recommend a system of presumed consent for Wales. At the Eisteddfod people do not understand the missed opportunity.

If you would like to express a view write to your elected Representative.

See http://www.writetothem.com/

All you need do is enter your post code.

Withybush Dialysis Letter to Western Mail

At last... dialysis unit is very welcome

SIR – As a committee, we would like to express our delight that there is finally going to be a dialysis unit set up at Withybush General Hospital.

This has been our ultimate aim and ambition since our inception as a committee 27 years ago.

After years of lobbying, we had been told over and over again, that there couldn’t and wouldn’t be a unit this far west. We are now beginning to feel hopeful.

We are disappointed that the permanent 21-station facility will take until 2011 to complete, but we are very excited and enthused at the possibility that a six-station temporary unit can be up and running by the end of this year.

This has to be such good news for the patients from Pembrokeshire, who have to face an extended journey to Carmarthen three times weekly for life-saving treatment. For some their day begins as early as 5.30am.

Hopefully, when the permanent unit is under way, facilities can be made available for holidaymakers to dialyse while they and their family are enjoying the wonderful scenery and amenities that the beautiful county of Pembrokeshire has to offer.

As a committee, we intend to continue raising funds to make sure that every comfort and need of those using the new unit will be met.

We are also committed to continue monitoring the progress of the construction and setting up of the units, to ensure that the work is completed as promised, as this facility is both, long overdue and very much welcomed.

CHRIS MACKEEN

Chair, Haverfordwest Committee of Kidney Wales Foundation

LETTER TO WESTERN MAIL 4 August 2008

A missed chance

SIR – I am disappointed by the WAG Health Committees’ decision not to pursue creating a “soft” opt-out system for organ donation.

Patients continue to die on waiting lists as the demand for organs increases; a natural consequence of patients living longer with co morbidities and chronic illnesses. An opt out system would have stimulated debate amongst the public, raised awareness regarding organ donation as well as the current dire shortage, as well as forcing people to face up to discussing death with their families.

One only has to look to recent media headlines to see the fantastic second chance that organ donor problems provides, with the tragic loss of life of a three-year-old girl crushed to death turning to happiness as her parents decided to help others by donating her heart and parts of her eyes.

I only hope that the Welsh Assembly Government now commit themselves to running a vast public awareness campaign encouraging people to become voluntary donors under the current system.

I only hope that in years to come a review may decide that opt out is the route to take for Wales. This decision is a missed opportunity to once again lead the way in healthcare. My only fear is that as a doctor, I may have to face many patients and their families, desperate to receive an organ and break the tragic news to them that they may die as there is no organ available.

DR DAVID GWYNFOR SAMUEL
Pant, Merthyr Tydfil

Missed opportunity for the Assembly to save so many lives - WalesOnline

Missed opportunity for the Assembly to save so many lives - WalesOnline

Missed opportunity for the Assembly to save so many lives
Aug 4 2008 by Richard Lewis BMA Wales Western Mail

THE National Assembly’s health committee last week rejected the idea of introducing presumed consent for organ donation in the near future.

Its members voted against a proposal to apply for a Legislative Competence Order, which would give the Assembly the power to bring in such a system in Wales, by six votes to three.

And the reason they gave for doing so? They do not believe that it is currently the most urgent priority and would act as a “distraction”.

So does that mean missing out on the chance to potentially save more lives is not a priority?

The committee also recommended that if any presumed consent system were to be introduced in the UK, it should be the “soft” version, where loved ones are consulted and their views taken into account.

This is something BMA Wales wholeheartedly supports and we cannot see why this should not have been an option for consideration.

More sign up to donate their organs on the NHS register - WalesOnline

More sign up to donate their organs on the NHS register
Aug 4 2008 by Madeleine Brindley, Western Mail

MORE than 11,000 people have joined the NHS Organ Donor Register in the wake of the first all-Wales organ donation campaign.

In the two months since the Donate Wales – Tell a Loved One campaign was launched in mid May, the number of people in Wales who have registered now stands at 791,543.

But the number of people waiting for an organ transplant in Wales have also increased – the figure now stands at 490, a 61% increase since 2001. The majority of people on the list are waiting for a new kidney.

And in the last five years 150 people from Wales have died while waiting for an organ transplant.

The Donate Wales campaign, which is led by the Kidney Wales Foundation, is the first of its kind in Wales and is designed to raise awareness about organ donation and encourage people to talk about their wishes with their families.

Although nine out of 10 people in Wales support the principle of organ donation, 40% of families refuse to allow their loved ones’ organs to be donated, even if they carried a donor card.

The campaign has been backed by Welsh celebrities including rugby star James Hook, and athlete and TV presenter Colin Jackson.

Roy J Thomas, chairman of the Kidney Wales Foundation, said: “We know that around 90% of people in Wales support organ donation, yet only 27% have acted on their good intentions and signed up.

“Since we launched the Tell a Loved One campaign, many people have told us that joining the Organ Donor Register has been something they have always wanted to do, but never got round to.

“The campaign has given these people the chance to take that extra vital step and just as importantly got more people talking about organ donation.”

To join the Organ Donor Register text GIVE to 64118, visit www.donatewales.org or contact 0845 60 60 400

Sunday, August 3, 2008

Establishment of the People Like Us Council

On Wednesday 6th of August at the Copthorne Hotel Cardiff (5pm) there will be a meeting of renal health professionals and patients to discuss the establishment of the People Like Us Council.

This idea started from the Conference held in January. Allison John will chair the Council. The Council has already received support from the Health Minister Edwina Hart and financial backing from the Kidney Wales Foundation.

For more information contact Allison John at the Kidney Wales Foundation.

Saturday, August 2, 2008

Cricketer to swap pads for running shoes (From South Wales Argus)

Cricketer to swap pads for running shoes (From South Wales Argus)

Cricketer to swap pads for running shoes


By South Wales Argus Newsdesk

NEWPORT-born former Glamorgan cricketer Dan Cherry will pound the streets of Cardiff in the autumn, to help raise awareness of a shortage of organ donors.

The 28-year-old former county batsman, now operations manager at Glamorgan's Swalec Stadium, Cardiff, is drawing inspiration for a 10-kilometre run and half-marathon from brother Ben and uncle Richard John, who have both been affected by kidney failure.

Mr Cherry, who will run the HSBC Cardiff 10K Run in September and the city's half marathon a month later, in aid of the Kidney Wales Foundation.

Mr John had a kidney and pancreas transplant last September, but Ben Cherry is currently awating a kidney tranplant.

"It's been difficult for Ben. Seeing his life revolve around dialysis and knowing his only real chance of leading a normal life again like my uncle is through a transplant, is what has inspired me to help the Kidney Wales Foundation and its lifesaving campaign," said Mr Cherry, who was on Glamorgan's books for more than a decade.

He can be sponsored by visiting justgiving.com/dancherry1.

To join the organ donor register, visit donatewales.co.uk or call 0845 6060400.

Wednesday, July 30, 2008

Saying no to ‘opt out’ donor scheme is ‘lost opportunity’ - WalesOnline

Saying no to ‘opt out’ donor scheme is ‘lost opportunity’ - WalesOnline

WALES has lost a “golden opportunity” to reverse the dire shortage of donated organs as an influential committee today rejects calls for presumed consent.

The National Assembly’s health committee says the time is not right to seek a legislative competence order (LCO) for presumed consent in Wales.

It voted six to three against the scheme – in which people are assumed to be organ donors unless they opt out – preferring to recommend that the NHS’ capacity to deal with organ transplants is increased in Wales.

Roy J Thomas, chairman of the Kidney Wales Foundation and the Donate Wales – Tell A Loved One campaign, said: “Wales must take the lead in addressing the issues surrounding the shortage of donors in Wales and not wait for decisions to be made by task forces in England and led by Whitehall.”

Monday, July 28, 2008

BBC NEWS | Health | Most back opt-out organ donation

BBC NEWS | Health | Most back opt-out organ donation


A quarter of the population is on the NHS Organ Donor Register.

A large majority of the population support the idea of presumed consent for organ donation, survey findings have suggested.

Two-thirds of more than 2,000 people surveyed by the British Medical Association said the UK should move to an opt-out system.

At present organs can only be taken from people who have actively chosen to be donors, and carry donor cards.

Every year hundreds of people die because of a shortage of donor organs.

BBC NEWS | Health | How the Spanish donor system works

BBC NEWS | Health | How the Spanish donor system works

Charismatic, driven and dedicated - Professor Jose Ramon Nunez works tirelessly as the transplant co-ordinator at the San Carlos hospital in Madrid.

This surgeon is part of an extraordinary national network of doctors trained to identify potential organ donors and speak to bereaved families in the midst of grieving.

It is their skill and focus which has helped create an organ donor system in Spain which is a world leader.

Wales could do this but prefers to wait for England and the oilt tanker in England to slowly turn to wake up. The number of people in Wales waiting for a transplant is at an all time high.

Is the Assembly Health Committee against Presumed Consent?

The Welsh Assembly Health and Wellbeing Committee after months of deliberation will report this week on the Inquiry into presumed consent for Organ Donation. This followed our Petition to the Petitions Committee in November 2007 and the Kidney Wales Foundation Petition of July 2007 accepted by Val Lloyd AM.

It is more than likely that the Committee will not be brave enough to seek Presumed Consent for Wales through a Legislative Competence Order (advice provided allows Wales to do so).It will be interesting to see how well known proponents of the change do vote as we cannot see some AMs being happy with abandoning principles of the need for presumed consent.

It is more likely that the Report will fudge the issue. It will need the bravery of leadership from a Minister to take this subject forward.

Those who are against presumed consent cloud issues with reference to implementing the Organ Donation Taskforce report. Not difficult in Wales but costly in England.We will take forever to do it as we in Wales will need to wait for England.

Watch this space and see what People Like Us think on Wednesday of the Committee's deliberations.

Saturday, July 26, 2008

Is the Organ UK Donation Taskforce against presumed consent?

In 2006, the Organ Donation Taskforce was convened to identify barriers to organ donation, analyse factors militating against organ donation and make recommendations for increasing donation rates within existing legal frameworks. The Taskforce's report "Organs for Transplants: A report from the Organ Donation Taskforce" was published on 16 January 2008 and contains a number of major recommendations designed to strengthen the infrastructure for organ donation and transplantation. The Government have accepted the recommendations, in full, and implementation is already under way and we believe can be implemented Wales far quicker than England.The UK wants it done at the same time.

The Taskforce has now been asked to consider the implications of changing to a system of presumed consent for organ donation in the United Kingdom, including the practical, clinical, ethical, legal and societal issues. The Taskforce has established expert working groups to advise on these issues and will report initial findings to Ministers in the summer.

This is a UK Taskforce consisting mainly of civil servants and NHS employees. Not all the evidence is in but signs are that the UK NHS will hijack the discussion and recommend against it.This is closed shop Taskforce. You need to part of the establishment to join or be part of the UK Transplant agenda.

The Assembly Health Committee reports next wednesday 30 of July. Wales may have a different view. It was Wales that mobilised the DVLA to get donation on forms.England and Westminister does not have all the answers on this subject.

Roy J. Thomas Chair of Kidney Wales said " Having given evidence to many committees in recent times we look forward to the Assembly Committee's approach next week.We are due to present our own views to the UK Taskforce in writing the very next day but we have written to the Chair of the UK Taskforce. Wales is still part of the UK but this is sometimes forgotten in London".

Tuesday, July 15, 2008

BBC NEWS | Wales | Support for organ opt-out scheme

BBC NEWS | Wales | Support for organ opt-out scheme

Nearly half of those surveyed by a Welsh assembly committee say they would like their organs taken automatically after their death to save a life.

The health and wellbeing committee is investigating whether Wales should adopt a system of presumed consent for organ donation.

Committee chair Jonathan Morgan says he wants the public's views to taken into account along with expert evidence.

About 470 people in Wales are waiting for an organ transplant.

Transplant charities want Wales to lead the way in adopting a system where organs would be taken from people following their death unless they had opted out beforehand.

A total of 48% of those who responded as part of the consultation said they would like their organs to be removed automatically to help save or improve someone else's life.

Friday, July 11, 2008

A Transplant patient is urging people to help make sure others don't have to endure the agonising wait for that life-saving call to say a donor has been found.She is...

A Transplant patient is urging people to help make sure others don't have to endure the agonising wait for that life-saving call to say a donor has been found.She is...

TRANSPLANT GRAN BACKS DONOR PLAN
Be the first reader to comment on this story
TERRY CROCKFORD
TERRY.CROCKFORD@SWWMEDIA.CO.UK

09:00 - 07 July 2008



A Transplant patient is urging people to help make sure others don't have to endure the agonising wait for that life-saving call to say a donor has been found.She is asking people to back the idea of an organ donor opt-out scheme in Wales.

Mother-of-two Christine Gleaves, who received a new kidney three weeks ago, has welcomed plans for a shake-up of the Welsh organ donor system.

Assembly research shows one in two people support a presumed consent system where people have to opt out if they do not want to donate their organs.



Such a scheme would prove a life-saver for those anxiously awaiting transplants, says 58-year-old Mrs Gleaves, of Church Road, Seven Sisters.

Wednesday, June 18, 2008

Goahead For Interim Dialysis Unit At Withybush (from Western Telegraph)

Goahead For Interim Dialysis Unit At Withybush (from Western Telegraph)


Go-ahead for interim dialysis unit at Withybush

Plans to speed up improved access to kidney dialysis in West Wales have been approved by Health Minister Edwina Hart today.

Work will get under way shortly on the development of interim facilities at Withybush Hospital, Haverfordwest before a permanent renal unit is built.

Patients are expected to benefit from the new temporary solution by the end of the year.

Monday, June 16, 2008

BBC NEWS | Wales | South West Wales | Local dialysis service announced

BBC NEWS | Wales | South West Wales | Local dialysis service announced


Kidney patients in west Wales have been told from the end of the year they will no longer have to travel to Carmarthen or Swansea for dialysis.

Interim services will be available at Withybush Hospital in Haverfordwest until a permanent renal unit opens in three year's time.

Health Minister Edwina Hart said the move would improve patient care.

Currently some patients in west Wales needing dialysis regularly travel over 80 miles to access services.

Ms Hart said: "I am committed to improving access to renal services across Wales.

"Currently, patients have to travel to Carmarthen and Swansea several times a week for dialysis which can be very draining.

"The new interim facilities, which should be in place by the end of the year, will improve the care for patients and reduce the need to travel which will help improve their health and quality of life."

Football: Kidney transplant patient Klasnic makes history

Klasnic makes history tonight and also scores a goal

Croatian international striker Ivan Klasnic became the first ever kidney transplant patient to take part in a major football finals when his side played Poland in their final Euro 2008 Group B match tonight.

Croatian international striker Ivan Klasnic is the first ever kidney transplant patient to take part in a major football finals when his side played Poland in their final Euro 2008 Group B tonight. But he went better and scored an excellent goal.

Saturday, June 14, 2008

Organ Donation and Ethnicity Study

Organ Donation and Ethnicity Study (ODES)

Despite several successful Campaigns there remains a severe shortage of organs for transplant in the UK and particular for Indo-Asian and Afro-Caribbean ethnic groups. Unfortunately, people from Indo-Asian and Afro-Caribbean ethnic backgrounds are more likely to need an organ transplant because of higher rates of high blood pressure and diabetes than the general population which can lead to kidney failure. Furthermore, since some organs are often matched by tissue type and blood group, an organ from the same ethnic group is more likely to be successful. The Organ Donation and Ethnicity Study (ODES) aims to understand better the relationship between ethnic beliefs and organ donation by talking to people from a White British/Irish, Indo-Asian and Afro-Caribbean ethnic background with a positive or ambivalent opinion of organ donation and transplantation. From this sample we aim to understand how people are managing to integrate the idea of organ donation and transplantation into their lives including their ethnic and spiritual beliefs.
The Faculty of Medicine recently celebrated its first decade, having been established in 1997, bringing together all the major West London medical schools into one world-class institution.

Imperial College London Faculty of Medicene .The Faculty is one of Europe's largest medical institutions - in terms of its staff and student population and its research income.

Dad Could Give Gift Of Life To Daughter (from South Wales Argus)

Dad Could Give Gift Of Life To Daughter (from South Wales Argus)

VALLEYS dad David Tilley is preparing to give the ultimate gift of life to his teenage daughter.

Mr Tilley, of Waunheulog, Nantyglo, has offered to donate a kidney to 14-year-old daughter Danielle, and needs to pass a final test before he can be approved for the operation.

The family was shocked when doctors said Danielle had suffered complete kidney failure after falling ill a year ago.

Mr Tilley said: "She was feeling unwell but there was nothing to say she was that bad. It came on so quickly.

"We went to Nevill Hall hospital and they said it was worse than we thought. She had a blood test and they said her kidneys weren't working.

"It was a big shock."

Nicholas benefits from Cardiff breakthrough in live kidney transplants - icWales

Nicholas benefits from Cardiff breakthrough in live kidney transplants - icWales

Nicholas benefits from Cardiff breakthrough in live kidney transplants
Jun 9 2008 by Madeleine Brindley, Western Mail

THE number of live kidney transplants could increase by up to 40% in Wales, as surgeons have carried out the first transplant between two people with incompatible blood groups.

Nicholas Kenvin from Pontllanfraith became the first patient to undergo the procedure in Wales after his father Lyndon donated a kidney to him.

Despite not having the same blood groups, the operation, which was carried out a month ago at the University Hospital of Wales in Cardiff, has been hailed a success.

Youngster’s walk to highlight kidney donor register - icWales

Youngster’s walk to highlight kidney donor register - icWales

Youngster’s walk to highlight kidney donor register
by Katie Norman, South Wales Echo

LESS than a year ago, sudden kidney failure nearly cost Alun Reynolds his life.

Within the space of a few hours the previously healthy 24-year-old was plunged into an excruciating and terrifying fight for his own life.

Just eight months later Alun, from Graigwen, Pontypridd, has fully recovered from the ordeal and has now made it his mission to raise awareness about kidney problems and encourage people to join the Organ Donor Register.

Tomorrow he will embark on a 60-mile walk from his home to Carmarthen Hospital, where a new specialist kidney unit has opened.

Along with a sponsored skydive and mile-long swim, Alun hopes the feat will raise £5,000 for the Kidney Wales Foundation.

Donor dad hopes to give his daughter a kidney - icWales

Donor dad hopes to give his daughter a kidney - icWales

Donor dad hopes to give his daughter a kidney
Jun 12 2008 by Daniel Perrin, Gwent Gazette


AN ANXIOUS father is awaiting the go-ahead to donate one of his kidneys to his poorly daughter.

David Tilley, of Waunheulog, Nantyglo, needs to pass a fitness test before he will be approved for the operation in which one of his kidneys will be transplanted into daughter Danielle.

Fourteen-year-old Danielle was discovered to have suffered complete kidney failure a year ago when she was given a blood test at Nevill Hall Hospital after falling ill.

She now spends every evening on a home dialysis machine and has tight restrictions on her food and drink intake, being limited to no more than a couple of millilitres of liquid a day.

Monday, June 9, 2008

Nicholas benefits from Cardiff breakthrough in live kidney transplants - icWales

Nicholas benefits from Cardiff breakthrough in live kidney transplants - icWales

Nicholas benefits from Cardiff breakthrough in live kidney transplants
Jun 9 2008 by Madeleine Brindley, Western Mail

THE number of live kidney transplants could increase by up to 40% in Wales, as surgeons have carried out the first transplant between two people with incompatible blood groups.

Nicholas Kenvin from Pontllanfraith became the first patient to undergo the procedure in Wales after his father Lyndon donated a kidney to him.

Despite not having the same blood groups, the operation, which was carried out a month ago at the University Hospital of Wales in Cardiff, has been hailed a success.

Nicholas, 28, who works for an exhibition firm, is returning to full health and fitness after suffering kidney failure a year ago.

He said: “I feel a thousand times better than I did on dialysis. I’m still getting my strength back, but I can’t stop moving.”

Thursday, June 5, 2008

Organ campaign leads UK - icWales

Organ campaign leads UK - icWales

Organ campaign leads UK
Jun 2 2008 by Jonathan Morgan, Western Mail

Charities working together to solve this problem will have a major impact says Jonathan Morgan

THE recent launch of the Donate Wales – Tell a Loved One campaign will set an example in Wales which the rest of the UK must follow.

The initiative was grasped in the Senedd building when politicians, charities, health professionals and journalists gathered around a large television for the first public screening of a new television advert.

The screening marked the launch of the campaign, aimed at promoting awareness of the importance of organ donation

Sons Joy At Dads Kidney Lifeline (from South Wales Argus)

Sons Joy At Dads Kidney Lifeline (from South Wales Argus)

Son's joy at dad's kidney lifeline
By Ben Frampton
Comment

Lyndon Kenvin (l) with his son Nick
A GWENT man said being the first person in Wales to undergo a kidney transplant from a donor from a different blood group has given him his life back.

Nicholas Kenvin received the kidney from his father Lyndon and said the transplant gave him a "second chance."

Mr Kenvin, 28, went to his GP in November 2006 feeling constantly tired. He was referred to a hospital and diagnosed with Alport's syndrome, a condition that causes kidney failure.

His parents were both screened as potential live donors, and doctors tested the level of antibodies in each to see who would be the least likely to donate a kidney which would be rejected.

Mr Kenvin's father proved to be more compatible on that front.

However, Mr Kenvin's blood group is O and his father is group A, so initially he wasn't considered as a donor.

Monday, May 5, 2008

News Wales > Health > Are you in favour of presumed organ donation?

News Wales > Health > Are you in favour of presumed organ donation? click

A Welsh Assembly Health Committee wants to hear public views on presumed consent for organ donation. This can be a sensitive subject, and the health committee wants to find out the views of as many people in Wales as possible.

On May 7 the committee will take evidence for its inquiry into the potential for making changes to the way body organs are donated. Members want to hear the opinions of the public during an open microphone session.

The committee is also undertaking an online poll and discussion forum on the subject. The results will form part of the evidence on which the Committee bases its final conclusions.

Committee chair Jonathan Morgan AM said: “There is little doubt that transplant surgery can save lives and improve the quality of lives of those who benefit from it. There is also a pressing shortage of donors.“However, we need to make sure that the views of the public are heard. Any change to the law on organ donation must be fully thought through and take account of public concerns. “We would like to hear from as many people from as many parts of Wales as possible, which is why we are meeting in several different towns and cities across the country. I would urge everybody to come along to have your say on a matter that will affect everybody in the whole country.”

The meeting takes place at the Welsh Assembly Government Office in Rhydycar, Merthyr on 7 May from 9:00am until 11:00 am. Members of the public will be able to gain entry from 8:45 am. Tea and coffee will be available.It is not necessary to book in advance, but if you wish to be sure of a seat, please contact the Booking Line on 0845 010 5500 or e-mail assembly.bookings@wales.gsi.gov.uk.

Saturday, May 3, 2008

We bought this teddy bear to put in Connor's coffin..it's his favourite toy now - Mirror.co.uk

We bought this teddy bear to put in Connor's coffin..it's his favourite toy now - Mirror.co.uk: "We bought this teddy bear to put in Connor's coffin..it's his favourite toy now

EXCLUSIVE BATTLING BABY WHO CHEATED DEATH TWICE BEST FOR REAL LIFE
By Kate Jackson 1/05/2008 Dail Mirror

If 'Blue Ted' looks a little bit tatty around the edges these days, it's only because of all the cuddles he has had as the much-loved companion of four-year-old Connor Owen."

Wednesday, April 30, 2008

Joy for Mark

Transplant tourist has kidney op - icWales click for full story

Now, after more than five years of waiting, the dad-of-two, from Porthcawl, has had a kidney transplant at Cardiff’s University Hospital of Wales.

Today, he said he hoped others wouldn’t have to go through the “horrendous” experience of trying to buy a kidney – and urged more people in South Wales to become donors.

Sunday, April 27, 2008

Donor Cards Backing (from Tivyside Advertiser)

Donor Cards Backing (from Tivyside Advertiser)

Donor cards backing

PLANS to tackle the shortage of organ donors by introducing an EU-wide donor card are being backed by Wales Euro-MPs Eluned Morgan and Glenys Kinnock.

They are supporting a European Parliament report urging greater co-operation between EU countries to address the shortage of organ donors and crackdown on the illegal trade in the trafficking of organs.
Last year 16 people from Wales died while waiting for an organ transplant, and there are currently 474 people in Wales on the waiting list.

As well as an EU donor card, MEPs also want a European transplant hotline to provide rapid, relevant and accurate information.

Eluned Morgan added: "Despite robust legislation in many parts of the world, the international black market in organs is now well-established, coaxing desperate people to far-flung countries in search of a kidney or another organ.

Saturday, April 19, 2008

Meet the donor who’s making a difference - icWales

Meet the donor who’s making a difference - icWales click for full article in Media Wales

Meet the donor who’s making a difference

Apr 12 2008

by Laura Wright, South Wales Echo
THIS week’s featured nominee for the Cardiff University People’s Fellowship Award is the first person in the UK to have four major organ transplants.

She was put on dialysis in hospital for 10 months, but was determined not to give up.

Thursday, April 3, 2008

Wales ahead of the game in free health checks - icWales

Wales ahead of the game in free health checks - icWales

Praise where praise is due but we need more for prevention of kidney disease

Wales ahead of the game in free health checks
Apr 2 2008 by Madeleine Brindley, Western Mail
WALES will not be following England’s idea to offer the over-40s free health checks.
The Welsh Assembly Government last night said screening is already provided for people at high risk of chronic diseases.
But it is exploring ways of strengthening existing screening for conditions such as cardiac disease, stroke and diabetes.
The English Health Secretary Alan Johnson yesterday announced that everyone aged 40 to 74 will be offered screening for illnesses that kill 170,000 people a year.
The check-ups are intended to help prevent heart disease, stroke, diabetes and kidney disease.

New multi-million pound kidney unit to be opened in Carmarthen » Central government » 24dash.com

New multi-million pound kidney unit to be opened in Carmarthen » Central government » 24dash.com
Click


Roy J. Thomas, Chairman of the Kidney Wales Foundation, said: “Our recent Campaign highlighted the need for more world class renal facilities in Wales.“The new dialysis unit in Carmarthen underlines the Minister’s support to achieving this goal and it is hugely encouraging to see she is committed to improving the lives of those affected by kidney failure.

“We are committed to working with a Government which is prepared to work in partnership and not be afraid to be challenged.“We can then assist each other in delivery with a more patient focused approach. By doing so patients lives will be improved.”

When they told me a kidney match had been found I cried - icWales


When they told me a kidney match had been found I cried - icWales click for full story

Everyone at Kidney Wales has great news when leading KW volunteer in the People Like Us Campaign had the call for a transplant . Read about her in the Echo tonight or click here. Picture Jayne Williams and her very supportive Family

After her diagnosis Jayne, who said she’d love to get back behind the bar, said she’s now devoting herself to the work of the Kidney Wales Foundation and their charity campaign to get more donors and raise money for kidney research.

“Whatever they want me to do I’ll do".
Jane, 34, of Glyndwr Road, Barry, had been undergoing dialysis four times a day taking 40 minutes a time – a treatment she carried out herself at home.
“The waiting was just horrible and only those who are on a waiting list for a transplant know what it’s like. It could be tomorrow it could be next year, you never know.”

But Jayne was driven by an optimism supported by her two young sons Ashley, 16, and Tarl, 12, who with husband Philip, rallied round to help her keep the family home running.
Everyone at Kidney Wales appreciates her work ethic .
"Jayne has been amazing in the Office and has already given of her time with Phil . Ashley is in School with my Son and is a great guy and a very good rugby player! Tarl and Ashley have been worried about their Mum .It is great news and what we want for all our patients in Wales -World Class treatment. " Said Roy J. Thomas Chairman of Kidney Wales Foundation.

Wednesday, March 26, 2008

Kidney donor shortage is a major worry - icWales

Kidney donor shortage is a major worry - icWales click

Kidney donor shortage is a major worry

Mar 13 2008 by Greg Tindle, South Wales Echo

A MASSIVE increase in the number of patients waiting for kidney transplants in Wales has been revealed today.

In just seven years the number of patients waiting for the operation has risen from 284 to 431 – and the reason is a desperate shortage of organs.

In Cardiff alone there are 181 people waiting for a transplant.

But Health Minister Edwina Hart today announced a grant of up to £100,000 for the Kidney Wales Foundation to help in a publicity drive to get more people to donate organs.

She made the pledge as she visited the University Hospital of Wales, Cardiff, to see plans for the new £4.2m transplant unit funded from the All-Wales capital programme, which will be open in two years.

“This will dramatically increase current renal transplant capacity and greatly improve the quality of life for renal patients,” she said.

Friday, March 21, 2008

BBC NEWS | UK | Wales | South East Wales | Father cycles for transplant sons

BBC NEWS | UK | Wales | South East Wales | Father cycles for transplant sons

Three years after two young brothers underwent kidney transplants, they are in training for a world championship.

Luke and Ashley Campbell, 16, who are two of a set of triplets, suffered from the same rare kidney disease.

The boys had to give up sport because they needed dialysis, but following their surgery they took up sport again.

Now their father has begun a cycle ride from John O'Groats to Land's End to raise £4,000 for them to go to the World Transplant Games.

Luke and Ashley had been on a 17-month waiting list when a kidney became available for one of them.

Kidney transplant waiting lists lengthen - icWales

Kidney transplant waiting lists lengthen - icWales

Kidney transplant waiting lists lengthen

Mar 13 2008 by Madeleine Brindley, Western Mail

THE number of people waiting for a kidney transplant in Wales has risen by 52% in the past six years.

Figures, published today for the first time, also reveal that up to 10,000 people in Wales are now suffering from some form of chronic kidney disease.

But there is a desperate shortage of close-to-home dialysis stations in parts of Wales.

In the last year, doctors have seen a 16% increase in the number of patients joining the transplant list – there were 431 people waiting at the end of 2007, but just 89 kidney transplants were carried out in Wales last year.

Experts believe the increase in kidney disease, which is being fuelled by chronic conditions such as diabetes, heart disease, high blood pressure and the obesity epidemic, represents one of Wales’ biggest public health threats for decades.

Allison John, of Kidney Wales Foundation, said, “These figures are shocking and reveal the public health threat we are facing in Wales. They are especially worrying as the numbers diagnosed with renal failure are likely to increase dramatically again over the next decade with the rise in obesity and the linked problems of diabetes and heart disease.

“There is also a desperate shortage of donors in Wales and, sadly, since 2003, more than 100 people have died before getting that second chance a kidney transplant could give them.”

Dr Richard Moore, clinical director of nephrology and transplantation at Cardiff and Vale NHS Trust, said the increase in kidney disease was symptomatic of Wales’ ageing population.

Speaking on World Kidney Day, today, he said, “We know that kidney disease is more common in the older population and we also have a growth in diseases such as diabetes, heart disease and hypertension, all of which carry a risk of chronic kidney disease.”

The International Society of Nephrology and the International Federation of Kidney Foundations said chronic diseases, including kidney disease, have replaced communicable diseases as the leading threat to both public health and healthcare budgets.

Dr Moore said there are plans in place in Wales to increase the “limited” number of dialysis stations – Health Minister Edwina Hart will today officially open a £4m kidney unit at West Wales General Hospital, in Carmarthen, with 26 stations – but the NHS must start planning for long-term demand.

And he said there were “reasons to be optimistic” about kidney transplantation, with a new unit to be built in Cardiff and plans to expand living donation.

The difference it makes
Just 10 weeks after her kidney transplant, the change in Zowiann Flood is remarkable. The 12-year-old is eating normal meals for the first time in her life since she was a baby and was diagnosed with a rare genetic condition.

Although it is still early days, her family are hopeful Zowiann’s energy will continue to improve and she will be able to lead a more active life.

Zowiann was born with the rare genetic disorder Falconi’s Cystinosis, which meant her kidneys cannot retain the nutrients her body needs.

Mum Lorraine, 47, had hoped to donate one of her own kidneys, but was unable to, and Zowiann was put on the transplant list in November, months after starting dialysis.

Within a month, a perfect match had been found – a 45-year-old mother-of-two who had died – and Zowiann had the transplant at Bristol Children’s Hospital just after Christmas.

Lorraine said, “Although we were so excited for Zowiann, it was so sad for that family to have lost someone they loved between Christmas and New Year. We can never thank that family enough.”

The Flood family will be leading this year’s Kidney Wales Foundation Walk for Life in Pontypridd and want more people to take part in the event on March 30.

For more information, call Lorraine on 01443 491 596 or the Kidney Wales Foundation office on 029 2034 3940.

New multi-million pound kidney unit to be opened in Carmarthen » Communities » 24dash.com

New multi-million pound kidney unit to be opened in Carmarthen » Communities » 24dash.com

Roy J. Thomas, Chairman of the Kidney Wales Foundation, said: “Our recent Campaign highlighted the need for more world class renal facilities in Wales.

“The new dialysis unit in Carmarthen underlines the Minister’s support to achieving this goal and it is hugely encouraging to see she is committed to improving the lives of those affected by kidney failure.

“We are committed to working with a Government which is prepared to work in partnership and not be afraid to be challenged.

“We can then assist each other in delivery with a more patient focused approach. By doing so patients lives will be improved.”

BBC NEWS | UK | Wales | Transplant survey 'positive step'

BBC NEWS | UK | Wales | Transplant survey 'positive step'

BBC WALES

Transplant survey 'positive step'

A woman who has had multiple organ transplants has welcomed public consultation into potential changes to the way organs are donated in Wales.

A Welsh assembly committee is looking at whether a system of presumed consent could or should be introduced.

Allison John, 29, from Cardiff, who has had liver, heart and lung and kidney transplants, called it a "positive step forward".

Currently organs are only taken from people who have registered as donors.

Ms John, who was born with cystic fibrosis, received a liver transplant 12 years ago, after an 11-year-old girl died in a riding accident.

She had been waiting 16 months for the organ and described it as an "horrendous experience".

"It was only in the nick of time an organ became available," she said.

She then had a heart and lung transplant 10 years ago, and 14 months ago her father donated his kidney to her.


Any change to the law on organ donation must be fully thought through and take account of public concerns.
Jonathan Morgan AM

Ms John, who does voluntary work for the Kidney Wales Foundation, welcomed consultation as a way to "gauge public perception".

Thursday, March 13, 2008

BBC NEWS | Wales | Kidney transplant patients go up


BBC NEWS | Wales | Kidney transplant patients go up CLICK

The number of people waiting for a kidney transplant in Wales has risen by more than 50% in the last six years, the Kidney Wales Foundation has said.
Its figures also show there were 431 people on the transplant waiting list at the end of 2007 but only 89 transplants were carried out last year.

The charity said the rise is due to increasing levels of diabetes, heart disease and an ageing population.

The figures were released on the same day a kidney unit opens in west Wales.

The transplant waiting list rise in Wales compares with a 42% increase across the UK.

Kidney Wales Foundation said up to 10,000 people in Wales were now suffering from some kind of chronic kidney disease and these figures were rising.

People with chronic kidney disease are 10 times more likely than healthy individuals to die of heart attacks and strokes.

Sadly, since 2003 more than 100 people have died before getting that second chance a kidney transplant could have given them

Allison John, Kidney Wales Foundation

Allison John of the foundation said better prevention and early detection was needed in Wales, including screening for at all at risk groups.

She also urged people to join the organ donation register.

"These figures are shocking and reveal the public health threat we are facing in Wales," she said.

"They are especially worrying as the numbers diagnosed with renal failure are likely to increase dramatically again over the next decade with the rise in obesity and the linked problems of diabetes and heart disease.

"There is also a desperate shortage of donors in Wales and sadly since 2003 more than 100 people have died before getting that second chance a kidney transplant could have given them."

Tuesday, March 11, 2008

Donor dad gives son a new lease of life - icWales

Donor dad gives son a new lease of life - icWalesDonor dad gives son a new lease of life
Mar 10 2008 by Madeleine Brindley, Western Mail

As their first son was born, Meredydd and Michelle Owen were advised to plan his funeral. But almost four years later, Connor is a thriving and energetic child after receiving the gift of life from his dad. As World Kidney Day approaches on Thursday, Health Editor Madeleine Brindley reports on meeting the young family

IF YOU ask three-year-old Connor Owen what’s in his tummy, he will proudly tell you that he has his own kidney.

Yet for most of his life Connor has lived without these vital organs, dependent on dialysis to keep his small body alive.

He has amazed his medical team, who had advised parents Meredydd and Michelle to plan his funeral, fearing he would only live for a few moments after birth.

But Connor has continued to defy his prognosis, and, after receiving his kidney from his father in December, now bounds around the family home, on the outskirts of Pontypool, with all the energy and enthusiasm of any other child of his age. A blue teddy, originally bought for his funeral, has become one of Connor’s favourites, accompanying him throughout his treatment.

Meredydd, 31, said, “The transplant was to improve his quality of life – we thought he had quite a good quality of life before as he was active and developing as any normal child would.

“It affected his eating, but in terms of everything else, he seemed to be doing ok.”

Michelle added, “After the transplant it hit us like a ton of bricks – Connor has so much energy, he zooms around everywhere and he’s eating pretty much everything all the time.

“Even though we spent three-and-a-half years talking about this and waiting for this to happen, the difference it has had on our lives is huge.”

The couple, who also have a six-year-old daughter Caitlyn and have become committed Kidney Wales Foundation supporters, knew that there was something wrong with Connor when they went for their 20-week scan – one of his kidneys had atrophied and the other had less than 10% function.