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14 Nov 2000 : Column 176WH

Organ Donation

12.29 pm

Mr. Hilary Benn (Leeds, Central): My interest in the subject of organ donation--I am glad to have the opportunity to raise it in debate--stems principally from the presence of the Leeds general infirmary and St. James's hospital in my constituency. I also want to express the appreciation that I am sure all hon. Members feel for the work done by the all-party kidney group. The debate today is about organ donation in general, not just kidneys, but I shall refer to kidneys in particular.

Leeds is the fifth largest of 30 centres nationally providing kidney transplants, and the third largest of seven national centres for liver transplants. The first transplant in the city of Leeds was done in 1967, 13 years after the world's first, in Boston. Interestingly, that was a living donation--one twin gave a kidney to the other. About 100 kidney transplants a year are carried out in Leeds, but about 350 people are waiting and the number is growing, as is the number of people on dialysis, by about 12 per cent. a year. Cadaveric donation remains the main source of kidneys, although in recent years live donation has come to play an increasingly important role.

The figures from Leeds reflect what is happening nationally. Although the number of kidney transplants in the United Kingdom has risen from just over 1,000 20 years ago to just under 6,000 last year, there has been a corresponding increase in the number of people waiting for a transplant--about 6,500 men, women and children. We know that the number of patients with end-stage renal failure who start dialysis is predicted to grow by a further 30 per cent. in the next few years. If we cannot do something to increase the rates of organ donation we shall have an even more serious problem than we have now.

The reasons for the gap are well understood. First, there has been a welcome decline in the number of people killed on the roads. Secondly, better treatment is now available in hospital for people with brain injuries. Thirdly, the development of surgical skill and immuno-suppressive drugs has greatly increased the success rates, and therefore demand, for transplantation. In addition, we are all living a little longer. The result is a shortage of organs. That means that every year people die while waiting for an organ to become available.

That point was made forcefully to me last year when I met Mr. Padgett and Mr. Liddell, the representatives of the kidney patients associations at the Leeds general infirmary and St. James's hospital in my constituency. That conversation was directly responsible for the scheme that was launched on 1 November, which will allow bank and credit card customers to carry the organ donor symbol on their card.

The idea is simple. Although about 8.5 million people are on the organ donor register, we do not always carry our organ donor card with us. We may leave it at home in a drawer; it could be in the house that we moved from some years ago; we may lose it. However, there is one card that we always carry with us when we leave home in the morning and that we take great care of--our bank or credit card. I am sure that all hon. Members in Westminster Hall this morning could immediately point to the place where they keep their bank or credit card.

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If we could make that bit of plastic another means of carrying a donor card, with 45 million credit cards in the country and between 35 million and 45 million bank debit cards, there is the potential to add to the 8.5 million people already on the organ donor register, and therefore the potential to make a big difference to the number of organ donors. To do that, we need as many banks and credit card companies as possible to take part. I pay tribute to the response to the initiative from Goldfish, the first credit card company to take it up. Having heard about the idea, the company expressed interest. Having shown that it could be made to work, it demonstrated commitment to it.

That commitment is crucial, because it has shown the rest of the industry that the proposition is practical. From January, Goldfish will ask new customers or existing customers whose card is to be renewed: "Do you want to be an organ donor or are you one already?" If the answer to either of those questions is yes, Goldfish will issue its ordinary credit card, but with the organ donor symbol on it, and pass the customer's name and address to the organ donor register. That is the essence of the scheme.

Apart from allowing a new way to register and therefore a method of maximising the chance that the donor card will be carried, the scheme has an added advantage: it may help to keep the organ donor register more up-to-date. When we move home, the chances are that we do not tell the register that we have moved, although we do tell our bank and credit card company. If the scheme takes off, the banks will be able to help United Kingdom Transplant to keep a more accurate register of donors' addresses by passing on data.

There has been considerable support for the scheme from Visa and Europay--responsible for Mastercard--whose symbols feature prominently on our pieces of plastic. Nationwide and MBNA are sending leaflets to their customers to encourage organ donation. The Department of Health has given unstinting support not only at ministerial level, but among officials, who have got their teeth into the idea and shown government at its best by working in partnership with others to make something happen. That has included giving participant companies the flexibility to ask their customers just one question--"Do you want to become an organ donor?"--to get people on the register, rather than going through each organ individually, as happens with the donor card. United Kingdom Transplant has also given support and help in enabling companies easily to transfer information about customers who want to be organ donors on to their systems. While I am in a generous mood, I thank hon. Members who have signed early-day motion 1107 in support of the initiative.

I simply hope that, where Goldfish has chosen to lead, the rest of the industry will follow. We have had two meetings with representatives from several banks and credit card companies, and I have corresponded with the British Bankers Association. A lot of interest has been shown and the response has been positive. However, to get the critical mass that we want and need, we must turn that interest and good will into action. The hopes of many people concerned with organ donation and transplantation will now be with those companies that, because they produce a valuable piece of plastic, hold one key to increasing the number of organ donors.

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If the scheme takes off, asking millions of customers about organ donation will be a valuable way of raising awareness and encouraging us to discuss with our nearest and dearest our wishes in the event that something happens to us. All the evidence shows that such a conversation is absolutely vital because it is practice--rightly--always to ask relatives for their consent. In addition, organ transplant co-ordinators say that it is rare for relatives, knowing that someone wanted to donate organs in the event of his death, to withhold permission. The more companies that participate, the more people who are asked and the more conversations that take place, the greater the chance that we will increase the number of organ donors and of relatives who give permission.

This scheme is one approach, but there are many others. In 1998, the Department launched a national publicity campaign, which has been widely welcomed, and other initiatives are in operation. The Driver and Vehicle Licensing Agency asks people applying for driving licences whether they want to take part. Boots launched its Advantage card and allowed the organ donor symbol to go on it. In my part of the world, the Yorkshire Evening Post is running a carry-the-card campaign. My hon. Friend the Member for Putney (Mr. Colman) hopes to say a few words about another campaign with which he is involved. They are all ways of raising the profile of organ donation as we move towards the target, set by the Royal College of Surgeons, of 10 million organ donors.

The donor card is, however, just one aspect of the supply of organs. Another is the practice in hospitals in dealing with potential donors. I was interested to read the Royal College of Surgeons working party report on transplantation, which was published in January last year, not least because it made some interesting points about organ identification and recovery in hospitals. Could my hon. Friend the Minister tell us what work is being done to support the development of non-heart-beating donor programmes in respect of kidneys? According to the report, Newcastle has the highest kidney donation rate in the country because it has such a programme. I am not medically qualified or especially technically gifted, but the report drew attention to the need to obtain what is called pre-arranged consent from the coroner to allow in situ perfusion of the kidneys following cardiac arrest, prior to asking relatives' consent. I understand that such permission must be negotiated on an area-by-area basis. Could that issue be taken up nationally?

Another issue that I should like to identify is the practice of hospitals in identifying potential donors and checking the register to establish whether they have expressed a wish to become a donor. It would be helpful if my hon. Friend the Minister would say what work is being done to ensure that good practice in particular hospitals becomes best practice throughout the national health service. I should also be grateful if she would comment on the impact of the number of intensive therapy beds on the possibility of keeping patients ventilated while they are considered for their suitability for organ donation.

I am aware that there has been considerable debate about a proposed change in the law to require people to opt out if they do not want their organs to be used, which is referred to as "presumed consent". I do not

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support that approach. If hon. Members will pardon the pun, it would be presumptuous to presume on a matter that must be one of personal choice. In any event, the recent controversy about post mortems and the retention of body parts in hospitals throughout the country demonstrates, if such demonstration were necessary, how sensitive the matter is. Better information is the key to enlightened consent.

We must recognise that people have strong feelings about what they want done with their body when the time comes for the spirit, wherever it goes, to shake off our mortal remains. At the risk of denying worms and grubs further sustenance, I am happy for my organs to be used, but we must recognise that many people feel differently. Interestingly, a National Kidney Research Fund poll found that whereas 77 per cent. of those who said that they were willing to become organ donors would be willing to donate a kidney, only 11 per cent. said that they wanted to donate their liver--I do not understand the distinction--and only 6 per cent. their cornea. That shows that people have different feelings, in particular about their eyes.

As everyone has different views, and because there are different cultures and religious standpoints, earlier this year Professor Sandy Davison from Leeds organised a conference on the issue in Bradford. I read the report, and although it seems that the Sikh, Hindu and Muslim faiths all have no difficulty with organ donation as a matter of principle, that is not always reflected in the decisions of family members from those faiths. That in part accounts for the lower rate of donation from ethnic minority communities even though their rates of kidney failure are some three to four times that of the population as a whole. Does my hon. Friend the Minister believe that there might be some benefit in taking the good initiative of West Yorkshire and examining whether it would be worth doing something at national level to raise awareness so that people know about the attitude of their faith community and so that that position can be publicised?

Organ donation is of course the best and only route available at present, although we have great hopes about possibilities for the future, such as xenotransplantation and the product of stem-cell research. Such developments may become available as we understand more about how we are made and made up. A book that I read yesterday expressed the hope that

12.45 pm

Mr. Tony Colman (Putney): I pay tribute to my hon. Friend the Member for Leeds, Central (Mr. Benn) for securing the debate and allowing me to speak briefly.

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I also pay tribute to my constituents Mr. M. Bewick, a consultant renal transplant surgeon at St. George's hospital in south-west London, and Jane Cooper, who led the Donor 2001 scheme. Mr. Bewick pointed out that every survey carried out has found that a minimum of 65 per cent. of the population want to donate their organs, but less than 1 per cent. are able to do so because the relevant card and information are not available. Miss Cooper has been pushing for a question to be included in the census, and although it is obviously too late for the coming census, there should be a debate on how that might be achieved for the following one.

I support an extension of one of my hon. Friend's many ideas that was pursued by Mr. Bewick and Miss Cooper, having pursued it with my right hon. Friends the Secretary of State for Health and the Home Secretary. The idea is to ensure that the electoral registration forms distributed each year by local authorities include a donor registration form in the same envelope. Both forms could, if the elector so wishes, be returned to the local authority, which could pass any donor registration forms to the national organ donor register. Of almost 500 local authorities in the United Kingdom, some 28 currently do so.

The key is to find a way to extend the scheme. In a written answer that I received on 6 November, my right hon. Friends the Secretary of State for Health and the Home Secretary supported the extension of such a scheme on a voluntary basis. Will my hon. Friend the Minister for Public Health find out whether it might be possible to survey all councils in the UK to determine which of them already have such a scheme and whether donor registration forms are sent annually? Will she ask the Department of the Environment, Transport and the Regions to mention including donor registration forms with electoral registration forms in the best practice documentation that it issues to every local authority?

12.47 pm

The Minister for Public Health (Yvette Cooper ): I begin by thanking my hon. Friend the Member for Leeds, Central (Mr. Benn) for raising this important issue, on which he has done a lot of work. I join him in paying tribute to the work that is being done in his Leeds constituency, at St. James's hospital. Much of that work obviously makes a difference to my constituents in Pontefract and Castleford, too. I should also like to place on the record my thanks to him for the time and effort that he has put into the issue, especially in promoting the Goldfish scheme to join the national health service organ donor register and other innovative programmes, to which I shall return later.

My hon. Friend is right. We face serious challenges in transplantation services due to the shortage of organs. Until 10 November 2000, 2,164 people had received life-saving operations. Each year, organs from about 900 donors give a new lease of life to nearly 3,000 people throughout the United Kingdom, and a further 3,000 have their sight restored as a result of organ donation. Transplants are now so successful that many more patients can be considered for such treatment. More are being added to waiting lists every week, and that is faster than organs are becoming available. There are now 6,733 people on the waiting list for transplantation in the UK. The vast majority are waiting for kidney transplants, and will have a reduced quality of life on

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dialysis. For those waiting for heart and liver transplants there is no alternative, and some will, sadly, die while they are waiting.

My hon. Friend is right that one of the reasons for the shortage of organs is success in other areas of policy, including safety on the roads and better treatment. Potential donors are usually those who have had unexpected, traumatic and untimely deaths. Many families find solace in the thought that their relatives' organs will be used to give life to others. I pay tribute to those who agree to donate organs for the impact that those decisions can have on huge numbers of families across the country.

Three out of four families who are asked about relatives' organ donations agree to the request. However, potential donors can be lost when families are not asked in the first place, when they are not aware of all the issues involved and, most important, when families are not aware of the wishes of the deceased. My hon. Friend is right that when a family knows that a relative wanted to donate organs, it is rare for that family to refuse the donation. I also agree that consent is vital and a fundamental principle. The views of relatives are critical, and underlie the principles of organ donation. Much work is under way to improve organ donation and increase the supply of organs for transplantation. However, much more work remains to be done. We need to be imaginative along the lines described by my hon. Friends the Members for Leeds, Central and for Putney (Mr. Colman), in order to raise awareness and communicate people's wishes to their relatives and to the national health service.

Last year, we welcomed the reports of the Royal College of Surgeons and the British Medical Association on the future development of transplantation services. In February, following the review of the United Kingdom Transplant Support Service Authority, we announced an extensive package of measures to increase the availability of organs for transplantation, along the lines of the recommendations set out in the reports. Those measures include the development of United Kingdom Transplant to promote organ procurement throughout the NHS; ensuring that best practice in organ procurement is shared; expanding and supporting the network of transplant co-ordinators; mounting publicity campaigns with a wide range of commercial organisations; increasing the provision of intensive treatment unit beds, and working with the Royal College of Surgeons and other professional bodies to ensure that all transplant units are staffed to deliver a high quality of service.

Three key issues exist: first, increasing people's awareness and willingness to donate organs; secondly, increasing access to those patients and changing the number of questions asked by the NHS when a potential donor is found; and, thirdly, increasing the quality of care to make the best possible use of organs when they are donated and to maximise the impact on patients' lives. I shall take each of those in turn.

It is important that people sign up to the organ donor register and communicate their wishes to their relatives. As my hon. Friend the Member for Leeds, Central said, that can be an extremely sensitive and difficult issue for families to confront. In October 1998, we launched the organ donation publicity campaign. The aims of the

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campaign are to raise public awareness of the shortage of organs for transplantation, and to attract new potential donors by persuading people to express their wish now to be an organ or tissue donor in the event of their death--ideally, by registering on the NHS organ donor register and by carrying a donor card, or by making their wishes known to family and friends. More than 8 million people are now registered--about 14 per cent. of the population--but we need to reach many more people.

The NHS organ donor register was set up six years ago to give people the opportunity to register their willingness to be a donor and to ensure that a record of donor wishes is available 24 hours a day. Clearly, we also need new and innovative ways to raise awareness and communicate those wishes to relatives. I therefore pay tribute to my hon. Friend's work on using bank and credit cards as a way of raising awareness and signing people up to the organ donor register. The work of Goldfish is very welcome and I am delighted that other companies are now interested in it. It has huge potential, particularly among commercial ventures, to encourage people to support the organ donor register.

I also welcome the proposals by my hon. Friend the Member for Putney to encourage local authorities to issue invitations to join the organ donor register. We are aware that several local authorities issued invitations to join the register as part of their electoral canvass. I am advised that United Kingdom Transplant could supply information about the outcome of that activity and I shall ask my officials to supply the information to my hon. Friend also.

My hon. Friend the Member for Leeds, Central referred to the importance of reaching different faiths and different communities. He was absolutely right to do so, and the shortage of donor organs is more acute among members of some ethnic minority communities because of the relatively high rate of diabetes, coronary heart disease, hypertension and kidney disease.

Although about 3 per cent. of the United Kingdom population are of Asian origin, about 15 per cent. of those on the United Kingdom kidney transplant waiting list are of Asian origin. We are also aware that there is a higher rate of family objections among that community. That can cause problems with kidneys in particular, because it is important to match the tissue type of the donor to the recipient and tissue types vary according to ethnic group, so some people from one ethnic group will reject organs from some other ethnic groups. That is why it is so important to promote organ donation sensitively throughout every community. For that reason we launched the South Asian Community Campaign in February 1999 to recruit more donors from that community. We are currently developing a similar campaign aimed at the African and Afro-Caribbean communities.

The Department was happy to support the multi-faith conference in Bradford last year, to which my hon. Friend the Member for Leeds, Central referred. I am advised that all the speakers at that event emphasised the value of transplantation and offered their support for organ donation as a worthwhile activity compatible with their faith. We must build on that work and we have maintained links with the leaders of the faith communities who spoke on that occasion and, through them, with their communities.

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Other innovative schemes to promote organ donation include that of Boots the chemist, which promotes organ donation through its in-store loyalty card. HTV West and Meridian adopted the NHS organ donor register in their Year of the Promise campaign and The Sun has run a campaign urging readers to join the register. We must work throughout the community to ensure that willing and suitable donors are identified, and that an approach is made to their families. That requires a whole-hospital approach.

My right hon. Friend the Member for Leeds, Central asked what we could do in the NHS to ensure best practice. We must adopt a whole-hospital approach to promote the value of organ donation throughout the organisation. In one example in the west midlands, all trust chief executives have agreed to do so. First, they will inform their staff of the trust's positive view on donation. Secondly, they will support staff when approaching relatives for donation. Thirdly, they will have further discussions with staff who are reluctant to

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approach families about donation. Fourthly, they will support transplant co-ordinators in their aim to promote general hospital-wide consciousness of issues concerning organ and tissue donation. We must work to ensure that such best practice exists throughout the NHS.

My hon. Friend the Member for Leeds, Central referred to coroners. I shall raise that matter further because we shall be discussing the matter with the Home Office. My hon. Friend also mentioned intensive treatment unit beds, and he is correct to say that we must ensure that the quality of care is available to make the most of all potential organ donation. Expansion in the number of critical care and intensive care beds is part of the picture.

I thank my hon. Friend for raising this important matter and increasing awareness of it. Anything that encourages more people to join the organ register and to be willing to donate organs can make a huge difference to families' lives.

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