Kidneys in Parliament

Written by By Dr Evan Harris MP, Co-chair All-Party Kidney Group on Fri 6th Jul 2007

The Dutch hoax kidney transplant TV game show which attracted much media attention recently certainly brought into the public eye the issues facing those waiting for a kidney transplant. Whether it did much good outside of Holland, or even in Holland, is hard to say. We in Britain are rather more low-key on how we do things but that should not mean we are reticent about raising the profile of kidney disease or the plight of patients.

The recent news about the little girl, Zoe Chambers, waiting desperately at the top of the waiting list for a transplant brought into clear focus the issues facing transplant patients.

The All Party Parliamentary Kidney Group last summer invited the key experts from across the transplant and renal communities to a summit to discuss what is going right and what is going wrong with kidney transplantation in the UK.

Kidney transplantation can revolutionise the life of of a patient on the waiting list

Faced with the facts that there is an official waiting list of 6000 kidney patients awaiting transplants; 800 potential donor organs are lost each year from non-heart beating donors; and that around 50% of organs from people are lost as a result of relatives refusing to permit the use of organs, the summit set out to look at how these issues could be solved.

The group produced a report, More Transplants, Saving More Lives, which was launched at the National Kidney Federation Annual Patient's Conference last October. This spelled out a 10-point action plan calling for sweeping changes to the current organ transplant system that could double the number of kidney patients receiving transplants each year.

The recommendations made by the report were broadly welcomed by other communities hit by low transplantation rates, such as hepatitis C sufferers.

In response to this report, the Department of Health has taken action. They have established an Organ Donation Task Force with a remit to identify the barriers to organ donation, analyse current issues that may have a bearing on donation rates and recommend action to be taken to increase organ donation. The APPG on kidneys welcomes this response but will keep the pressure up, monitoring the progress of this task force over the coming months, awaiting the results and ensuring that they are acted upon.

I anticipate the Group will be helped in this by other communities hit by low transplantation rates. Together, the joint influence of these concerned communities can keep up the pressure on the Department of Health to seriously consider our recommendations and make some practical changes to the system for the better.

I personally believe that the UK should move to a system in which consent for organ donation is presumed and those wishing that their organs should not be removed for transplant should 'opt-out'.

In 1999, I proposed a motion at the British Medical Association Annual Representatives Meeting calling for a system of presumed consent on organ donation to be adopted. The BMA now campaigns for the introduction of such a system. The Liberal Democrats have also backed the policy.

In early 2004, as the Human Tissue Bill progressed through Parliament, I proposed an amendment which, if successful, would have brought presumed consent into legislation. Unfortunately, the Government opposed the amendment and it failed.

It is still early days for the policies in transplantation instigated by the Human Tissue Act 2004 and we must allow time for the Government's Transplant Strategy to take effect. But we must keep up the pressure to ensure the Government reviews the success of the Transplant Strategy over the coming years and, if there is insufficient progress in increasing transplantation rates, allows Parliament to consider alternative measures to tackle the plight of those on the transplant waiting list, such as presumed consent for organ donation with opt-out.

There are many other avenues by which transplantation rates can be increased which must also be explored. I actively support investigating methods to raise public awareness about organ donation and instigating more efficient systems in hospitals to ensure more transplants can take place.

After the huge success of the summit last year, next week the All Party Parliamentary Kidney Group is hosting a Dialysis Summit with a view to producing a similar manifesto to drive improvements in this area. The most pressing issues currently facing the dialysis community are up for discussion including capacity, service delivery, the importance of patient choice over dialysis provision and some of the factors influencing their experience of receiving dialysis.

Holiday dialysis and transport as well as access to surgery will all hopefully be covered. Our aim is to produce another report to force the Government to listen to our concerns.