BKPA calls for changes in organ donation law in Wales to trigger UK wide debate on increasing transplantation and saving lives
BKPA welcomes the change in law, coming into force in Wales today (1st December 2015), when it becomes the first UK nation to adopt a system of presumed or deemed consent for organ donation, as it provides an opportunity to trigger a wider UK debate on the need to improve organ donation rates.
Fiona Loud, Policy Director at BKPA said “Transplantation is the gold standard intervention for individuals with kidney failure and transforms peoples lives. Yet earlier this year we heard that the numbers of expected transplants had fallen by 5%, and that rates of consent to donation have stayed stubbornly at 60%. We want this significant event and the similar debates in the other devolved nations to initiate a UK-wide conversation and kick off a transplantation revolution”.
The BKPA, whose founder played a prominent role in the introduction of the original organ donor cards in the 1970s, believes that the change in Wales, which means that people will have to opt-out if they do not want their organs used after death, does not form the sole answer to increasing organ donation. We realise that for many people this is not a simple issue, raising as it does wider societal, moral and religious questions. The question of legislation versus education must form part of the national debate. We think it is encouraging that in Wales only about 3% of the population have registered to opt-out, with 89% saying they are aware of the new law. This level of awareness has been achieved through wide discussion and publicity in Wales. We would like to see similar levels of publicity elsewhere in the UK. At the same time, we encourage everyone to think about organ donation and let their families know their wishes.
There are other key aspects to a successful organ donation programme, and the first is making organs available. Potential donors are not consistently detected in all hospitals, although the introduction of organ donation champions and committees over the past few years has improved this situation. Doctors and nurses are essential links in the chain and we call for more rigorous follow-up of missed opportunities to donate1 in each hospital, and for adequate provision of specialist organ donation nurses. There are only about 5,000 people each year who die in circumstances where they could donate, so being able to identify and discuss organ donation with their families is critical.
A transplant makes a huge difference to quality of life and outcomes, by removing the need for dialysis and difficult symptoms when the kidneys no longer function. The people we support are constantly grateful to donors and their families who enable them to live their lives after the donor has gone. There is a major cost benefit to the NHS as dialysis treatment, primarily taken at hospital or in satellite units, costs approx. £30k pa, excluding other costs. The maintenance costs for a kidney transplant recipient are less than £5k pa2.
While this work continues, the need for transplantation does not wait; every day 19 further people will present with kidney failure. Kidney patients and their families are anxiously waiting and hoping for the gift of life will be watching the effect of the change in the law and hope for a better future. We will be supporting them and pushing for all opportunities to increase transplant and save lives.
About the BKPA:
The British Kidney Patient Association (BKPA) is a national charity which works to improve quality of life for kidney patients through advocacy, direct grants, educating and informing patients, counselling and funding patient-centred research, healthcare professionals and projects.
About kidney transplants:
There are 5400 people on the kidney transplant waiting list, but there could be a further 2,000 who are suspended from the list due to illness. Behind them are another 20,000 people on dialysis who are unlikely to ever be listed for a transplant. The average wait for a transplant is 3 years, with significant variation, and one kidney patient a day will die while waiting.
1. Potential donor audit
2. Costs of dialysis