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In Kidney Wales evidence to the House Of Lords EU Select Committee yesterday:
1. The Lords questioned the relatively little empirical evidence on the impact of presumed consent on donation rates. However,KW pointed out the study by Abadie and Gay of Harvard and Chicago Universities (2005) to examine this across 22 countries who have introduced presumed consent systems over a 10 year period. The study found that presumed consent had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in presumed consent countries.
2. Kidney Wales proposes that the law on consent for organ donation be changed and that for purposes of disease treatment Welsh residents are presumed to be organ donors on death unless:
• They have opted out
• They cannot be identified
• The persons place of residence cannot be identified
• The wishes of the deceased can be proven to be contrary after relatives have been contacted
• Immediate relatives object.
KW will be attending the Assembly Health and Wellbeing Committee at the Assembly on 30 of January 2007 scoping a change in law in Wales on presumed consent .
Showing posts with label The Truth and the Need. Show all posts
Showing posts with label The Truth and the Need. Show all posts
Friday, January 25, 2008
Friday, October 5, 2007
Friendship worth losing a kidney for -46% would be live donors in Wales and KW says 70% or more would consider after death
=Welsh People value friendship so much they would donate one of their kidneys to a friend in need.A survey, commissioned by film company Disney, has revealed 46 per cent would give their organ.Sixty-six per cent said they would lend friends cash and almost half - 44 per cent - said they would work for or employ them.Determining the most important factor for choosing a friend, 70 per cent of Welsh people voted for honesty, followed by a good sense of humour - 68 per cent.
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( SOURCE : ARTICLE FROM MARCH 2007 BY LISA JONES SOUTH WALES ECHO)
PLUS COMMENT : The BBC 5 Live ran a great debate on Thursday morning on donating a kidney to a friend . We found this article by Lisa Jones from March to demonsrate the thoughts of us in Wales.On Thursday afternoon a patient rang Kidney Wales Foundation to say that he was asking friends if they would donate to him . NZ legend Jonah Lomu had a friend give him his new life.
9
Until now, living donor transplants have occurred only between relatives or people with a close emotional relationship, such as couples living together.
But a change in the rules last year led the Human Tissue Authority (HTA) to allow strangers to donate to each other.
Experts hope up to 200 more kidney patients a year in the UK could benefit from this kind of transplant in the future. In the first few years, about 50 extra patients are expected to benefit in the UK.
But a change in the rules last year led the Human Tissue Authority (HTA) to allow strangers to donate to each other.
Experts hope up to 200 more kidney patients a year in the UK could benefit from this kind of transplant in the future. In the first few years, about 50 extra patients are expected to benefit in the UK.
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SEE BBC COVERAGE OF BOYLE BROTHERS FROM BRIDGEND
A new kidney click for film
Terry Boyle from Bridgend received a kidney from his younger brother.
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Click To See News in other parts of the World that will amaze you
Wednesday, October 3, 2007
Petitions Committe Evidence 4 October 2007 from Kidney Wales Foundation
Evidence demonstrating the need for more funding on donor awareness will be given to the Petitions Commitee of the Assembly tomorrow at 12 30pm
by Kidney Wales Foundation
by Kidney Wales Foundation
pictured Bethan Jenkins new AM and member of Committee
What are the figures of spending by Government's UK Transplant on donor awareness in Wales?
1. 2004-05 £36,674.
2. 2005-06 £42,593, of this £35,000 provided by the Assembly Government.
3. 2006-07 £95,000 made up of £35,000 base funding, plus extra £20,000. £40,000 from the Assembly in March for a leaflet drop.
What is the real effect of our Petition if actioned?
What we are saying is that if the Government increase the amount in 2007 -2008 the figures could look like
UKT base £35,000 plus £20,000= £55,000
Assembly £40,000
Extra £35,000 say from Assembly. We believe more should be allocated.
Matched by us the Kidney Wales Foundation at £35,000
Total is then £165,000. Wales will have over a 67% increase in the budget.
Awareness
The Chief Medical Officer in England, Sir Liam Donaldson in July this year suggested we adopt an “opt in system” similar to Spain where transplant rates are far higher than they are here. This is known as you all know as the system of “presumed consent”. This would view everybody as a potential donor unless they had opted out before their death. On the day Sir Liam’s Report was published the coverage it received led to 17,000 signing on to the Organ Donor Register operated by UKT we estimate it was around 22,000 after that proving that raising awareness makes a difference.
FACTS
UK position -400 people die every year waiting for transplant in UK. To meet demand for organs the number of signatures on the ODR would need to almost treble. In UK there are 8,000 people waiting yet just 3,000 transplants carried out every year.
In Wales, 750,000 registered on the ODR that figure are 25 % of population average is 24% in UK. UKT always give that as a justification. Over 400 waiting for a transplant, we believe there are more than this but these is UKT and Govt figures.
Transplants Cardiff 2004-2005, 83 2005-6, 78 and 2006-7 , 89
North Wales Liverpool 2004-2005, 16 2005-6, 16 and 2006-7, 13
All children are transplanted outside of Wales in Bristol and Liverpool.
What are the figures of spending by Government's UK Transplant on donor awareness in Wales?
1. 2004-05 £36,674.
2. 2005-06 £42,593, of this £35,000 provided by the Assembly Government.
3. 2006-07 £95,000 made up of £35,000 base funding, plus extra £20,000. £40,000 from the Assembly in March for a leaflet drop.
What is the real effect of our Petition if actioned?
What we are saying is that if the Government increase the amount in 2007 -2008 the figures could look like
UKT base £35,000 plus £20,000= £55,000
Assembly £40,000
Extra £35,000 say from Assembly. We believe more should be allocated.
Matched by us the Kidney Wales Foundation at £35,000
Total is then £165,000. Wales will have over a 67% increase in the budget.
Awareness
The Chief Medical Officer in England, Sir Liam Donaldson in July this year suggested we adopt an “opt in system” similar to Spain where transplant rates are far higher than they are here. This is known as you all know as the system of “presumed consent”. This would view everybody as a potential donor unless they had opted out before their death. On the day Sir Liam’s Report was published the coverage it received led to 17,000 signing on to the Organ Donor Register operated by UKT we estimate it was around 22,000 after that proving that raising awareness makes a difference.
FACTS
UK position -400 people die every year waiting for transplant in UK. To meet demand for organs the number of signatures on the ODR would need to almost treble. In UK there are 8,000 people waiting yet just 3,000 transplants carried out every year.
In Wales, 750,000 registered on the ODR that figure are 25 % of population average is 24% in UK. UKT always give that as a justification. Over 400 waiting for a transplant, we believe there are more than this but these is UKT and Govt figures.
Transplants Cardiff 2004-2005, 83 2005-6, 78 and 2006-7 , 89
North Wales Liverpool 2004-2005, 16 2005-6, 16 and 2006-7, 13
All children are transplanted outside of Wales in Bristol and Liverpool.
Monday, October 1, 2007
Research backs Campaign claims of growth of need and for planning requirement in Wales
Equity of access to dialysis facilities in Wales -- White et al. 99 (7): 445 -- QJM Click reserach
It is clear that the numbers of patients needing dialysis, and in particular in-centre haemodialysis, will continue to rise. In Wales, dialysis capacity is overwhelmed, more than 20% of the population still lives more than 30 min drive away from a dialysis unit, and there are areas of relative under-provision. There is, therefore, a need to plan the building of additional, appropriately resourced, facilities.
In the rest of the UK, subsidiary units are sited in more ‘off hospital’ locations. Without exception, the major area of complaint for patients undergoing HD is transport and journey times: a journey to and from an HD unit in Wales can take longer than the treatment itself. The large and sparsely populated areas outside of the major towns have small roads that also traverse difficult terrain, making travel time even longer and less predictable. The location of future units should, therefore, take these and other factors into account.
Equity of access to dialysis facilities in Wales P. White1, V. James1, D. Ansell2, V. Lodhi3 and K.L. Donovan3,
From the 1Cartographics Department, Statistical Directorate, Welsh Assembly Government, Cardiff, 2UK Renal Registry, Southmead Hospital, Bristol and 3University Hospital of Wales, Cardiff, UK
It is clear that the numbers of patients needing dialysis, and in particular in-centre haemodialysis, will continue to rise. In Wales, dialysis capacity is overwhelmed, more than 20% of the population still lives more than 30 min drive away from a dialysis unit, and there are areas of relative under-provision. There is, therefore, a need to plan the building of additional, appropriately resourced, facilities.
In the rest of the UK, subsidiary units are sited in more ‘off hospital’ locations. Without exception, the major area of complaint for patients undergoing HD is transport and journey times: a journey to and from an HD unit in Wales can take longer than the treatment itself. The large and sparsely populated areas outside of the major towns have small roads that also traverse difficult terrain, making travel time even longer and less predictable. The location of future units should, therefore, take these and other factors into account.
Equity of access to dialysis facilities in Wales P. White1, V. James1, D. Ansell2, V. Lodhi3 and K.L. Donovan3,
From the 1Cartographics Department, Statistical Directorate, Welsh Assembly Government, Cardiff, 2UK Renal Registry, Southmead Hospital, Bristol and 3University Hospital of Wales, Cardiff, UK
Monday, September 3, 2007
TRANSPLANTS IN WALES A NEW UNIT NEEDED NOW
The Welsh Assembly Government should develop a National Transplant Strategy to take a holistic approach to deficiencies in current provision. The current level of transplants is far lower in Wales than people think – just 89 transplants in Cardiff last year – when over 400 to 500 people are waiting across Wales. Without a new transplant facility patients through pure frustration will seek remedies elsewhere and the trend to health tourism is a worrying development. Our children in Wales have transplants in England causing families to travel and stay away from loved ones.
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A new transplant unit in Wales is required to expand capacity to deliver kidney transplants. In Wales there is one transplant unit based at UHW in Cardiff; patients in North Wales receive their transplants and initial follow up in England; and all Welsh paediatric transplantation takes place in England. Kidney Wales is aware of business plans being submitted for a new Transplant Unit in Cardiff and this desperately needs to be taken forward.
We can perform in Wales with new thinking
Managing Renal Disease in Wales – the need for better “housekeeping”
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.
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.
Catching up in Wales Accountablity and Need
WALES NEEDS TO CATCH UP IF IT WANTS TO BE WORLD CLASS
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:
Transport
Haemodialysis capacity
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 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:
Transport
Haemodialysis capacity
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.
Why does Wales need one Kidney Organisation?
THE FACTS ON THE NEED IN WALES
ONE
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.
TWO
Surveys show that 70% of people want to donate their organs after death but only 20% are on the NHS Organ Donor Register.
THREE
The numbers of people needing dialysis is increasing.
FOUR
No one organisation holds information on all Kidney Patients in Wales.
FIVE
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.
SIX
As the population in Wales is getting older these Patients need more dialysis care and cannot dialyse at home.
SEVEN
The transport of dialysis patients to have dialysis in Wales needs to be reviewed with increased demand.
EIGHT
Patients on the transplant waiting list far exceed those being operated upon each year.
NINE
Black and minority ethnic groups are in double jeopardy because they suffer kidney disease on higher scale with a reduced pool of donors.
TEN
400 to 500 patents are waiting for a transplants in Wales . A crisis of organ supply transplant faces all parts of the UK.
ELEVEN
Transplant tourism is a worrying development and associated risks to patients and donors.
TWELVE
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.
ONE
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.
TWO
Surveys show that 70% of people want to donate their organs after death but only 20% are on the NHS Organ Donor Register.
THREE
The numbers of people needing dialysis is increasing.
FOUR
No one organisation holds information on all Kidney Patients in Wales.
FIVE
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.
SIX
As the population in Wales is getting older these Patients need more dialysis care and cannot dialyse at home.
SEVEN
The transport of dialysis patients to have dialysis in Wales needs to be reviewed with increased demand.
EIGHT
Patients on the transplant waiting list far exceed those being operated upon each year.
NINE
Black and minority ethnic groups are in double jeopardy because they suffer kidney disease on higher scale with a reduced pool of donors.
TEN
400 to 500 patents are waiting for a transplants in Wales . A crisis of organ supply transplant faces all parts of the UK.
ELEVEN
Transplant tourism is a worrying development and associated risks to patients and donors.
TWELVE
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.
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