Saturday, September 29, 2007
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.
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.
Wednesday, September 26, 2007
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.
The Assembly Wales Cross Party Assembly Group met last night to consider the Campaign.
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
The Meeting discussed the PLUS Campaign and will meet again at the end of October.
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
Saturday, September 22, 2007
Friday, September 21, 2007
Thursday, September 20, 2007
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
‘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.”
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...
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 - 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.
Tuesday, September 18, 2007
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 email@example.com Please indicate short or long document.
NEWS NEWS Read Melanie Wager 's PLUS blog http://www.melsplusdiary.blogspot.com/
Monday, September 10, 2007
ALLISON JOHN SHARES THE PLus CAMPAIGN WITH WELSH RUGBY STARS AS THEY PREPARE TO START THIER OWN WORLD CUP CAMPAIGN
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.
Saturday, September 8, 2007
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.
Here's why we think Presumed Consent would be better:
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.
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.
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.
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.
Our CAMPAIGN is on the road Western Mail Saturday 8 September 2007
Two of our key supporters Gaynor Taylor and Helena Jones speak up and show leadership
CAMPAIGNERS fighting to increase the number of organ donors in Wales have called on the Chief Medical Officer to break his silence on presumed consent.
And the Kidney Wales Foundation has appealed for new Wales-only laws to change the current organ donor system from an opt-in one to an opt-out system.
Neither Chief Medical Officer Dr Tony Jewell nor Health Minister Edwina Hart have publicly stated whether they are in favour of a system of presumed consent, which many believe would increase the number of potential donors and reduce the waiting lists for transplants.
England’s Chief Medical Officer Sir Liam Donaldson has already announced his full support for presumed consent.
Helena Jones, 74, from Glynneath, whose four children need a kidney transplant, said, “Dr Jewell should have the guts to answer the question and not hide behind the skirt of the [Health] Minister.
Gaynor Taylor, from Barry who made the decision to donate her skateboarder son Richard’s organs after a tragic accident, described organ donation as “a gift” which can help to ease the pain of losing a loved one.
Allison John, from Fishguard, who was the first person in the UK to have a liver, heart and lungs and kidney transplant said, “Wales led the way in calling for a smoking ban, it can do it again with transplants.
“Hundreds of people are dying needlessly because of the dire shortage of organs but there is a way we can save lives if we are brave enough to step in first. The Assembly Government now has the tools to do the job – it’s time to use them.”
Thursday, September 6, 2007
Monday, September 3, 2007
This is of course a complex moral argument, but here in Wales we have not had a public debate about the viability of a presumed consent scheme.
According to Government figures, it is thought that up to 10,000 people in Wales have renal disease and it affects all age groups. We believe there are more than this as there is no one organisation in Wales collating figures and what we get from the Assembly is sketchy.
Renal disease can impair quality of life significantly and its consequences can be fatal. There is no doubt that the trend is upward and the new NHS Wales Renal National Service Framework predicts a year on year increase of 3-4% in total patients requiring Renal Replacement Therapy (RRT) and an annual increase of 7% requiring haemodialysis.
The NHS in Wales has responded in recent years to the challenges posed by rising levels of renal disease by expanding facilities for treating patients with established renal failure by dialysis and transplantation, but the continuing increases means more needs to be done to keep pace with growing demand.
The NSF in Wales provides a footprint for renal services but this needs to be properly introduced and benchmarked with a clearer and timetabled plan for action. In March 2007 NHS Wales published its Renal National Service Framework (NSF) which echoed the themes of the Government’s Designed for Life Strategy of more prevention, early detection, improved access and better services, aiming to ensure the right services are provided in the right place at the right time. This is clearly what we would require for kidney patients in Wales. Whilst kidney patients in Wales welcome the Renal NSF they feel it critically lacks an action plan combined with a clear measurable timetable for action.
In England the Renal Service National Service Framework was published some years ago. We published our Welsh version in May 2007. The Services in England had a second report of progress in May 2007.
Renal NSF Update May 2007
In England the second Renal Services National Service Framework (NSF) progress report was launched on 18 May by Rosie Winterton, Minister of State, at the newly opened Department of Renal Medicine at Doncaster Royal Infirmary. Copies of the report are available at the Department of Health (DH) website.
In England the renal policy team has held workshops on:
Quality and patient experience
Home dialysis therapies.
In England the following is under review
Management of early kidney disease.
Timely creation of vascular access for haemodialysis.
Transport arrangements for haemodialysis.
In the UK at least one person dies while on a transplant waiting list. Transplantation saves the NHS money in the long term and improves Patients lives.
Surveys show that 70% of people want to donate their organs after death but only 20% are on the NHS Organ Donor Register.
The numbers of people needing dialysis is increasing.
No one organisation holds information on all Kidney Patients in Wales.
A transplant unit in Wales will ensure our children and families do not travel long distances to have a transplant and can stay in Wales. All children’s transplants are conducted outside Wales.
As the population in Wales is getting older these Patients need more dialysis care and cannot dialyse at home.
The transport of dialysis patients to have dialysis in Wales needs to be reviewed with increased demand.
Patients on the transplant waiting list far exceed those being operated upon each year.
Black and minority ethnic groups are in double jeopardy because they suffer kidney disease on higher scale with a reduced pool of donors.
400 to 500 patents are waiting for a transplants in Wales . A crisis of organ supply transplant faces all parts of the UK.
Transplant tourism is a worrying development and associated risks to patients and donors.
Opportunities to retrieve suitable organs after someone’s death are repeatedly lost because of issues surrounding consent, failure in timely use of brain stem testing and organisational inadequacies.
Saturday, September 1, 2007
Roy J Thomas today praised the new Ambassador of Kidney Wales Allison John . He said " We are puttting Patients in pole position in front of the Health Minister on Wednesday 5 th of September and Allison is playing a vital role." KW sent briefings this week to the Minister and Patients. He added " there is no doubt we need one organisation in Wales dealing with kidney issues, we have a Renal Advisory Group ,Task forces ,Working Groups, Health Commission Wales ,Local Health Boards, Trusts all are complex when we could simplify matters for patients"
The Campaign is supported by the Welsh Kidney Patients Association.
Meet Allison John -e mail her on firstname.lastname@example.org
Miss. Allison John - Kidney Wales Foundation Ambassador Biography
Born in Haverfordwest, Pembrokeshire, Allison was brought up in a small village near the Preseli Mountains. Born with Cystic Fibrosis, by the time she was 17 she needed a liver transplant. 2 years later, she needed a heart/lung transplant. She graduated with a BSc with honours in Neuroscience from Cardiff University in 2001 and went on to study Medicine at Cardiff University, School of Medicine. Later that year she met her partner, New Zealander Nathan Angell. After 8 years of traveling the world and living life to the full she was diagnosed with renal failure and had to leave her medical training. She was on haemodialysis for 18 months. She received a kidney from her father, David John in December 2006. She is the new Ambassador for Kidney Wales Foundation. Allison lives in Cardiff with her partner Nathan and hopes to return to her studies next year.