HC Deb 24 May 1990 vol 173 cc434-42 11.56 am
Sir Michael McNair-Wilson (Newbury)

I am grateful for the opportunity to initiate an Adjournment debate to air some of the problems facing kidney patients—that is, those suffering from end-stage renal failure who are either on dialysis or awaiting a transplant.

First, I must declare an interest: I am a kidney patient on haemo-dialysis which I receive at home, and I am president of the National Federation of Kidney Patients Associations.

Kidney disease is the fifth most prevalent and fatal illness in Britain, hut, with the advent of an ever-increasing number of haemo-dialysis machines and the introduction of continuous ambulatory peritoneal dialysis, it is no longer the killer disease that it once was. With successful transplantation, it is an illness which can be almost completely overcome. The United Kingdom used to lag behind many European countries in the number of patients receiving dialysis, but my most recent figure of 55 patients per million of the population receiving treatment bears favourable comparison with many of our neighbours, even if we still have a fair way to go to catch up with the Federal Republic of West Germany and Switzerland in the number of patients receiving dialysis per million of the population.

But I understand that those needing dialysis are increasing at the rate of 500 patients per year and that probably between 80 and 100 patients per million now require renal support, although, sadly, many of them do not get it. Kidney transplantation has been on a steadily rising trend since 1983 and has almost doubled during the past 10 years. All that says much for the Department of Health and the regional and district health authorities which have accepted renal replacement therapy as a form of treatment which should be available for all who need it. A dialysis machine manufacturer recently told me that demand for his equipment had fallen back to a fairly steady figure of about 300 machines a year from the time when two of three times that number were being ordered.

What matters now is to update the older machines and encourage the creation of small, more localised, minimum care dialysis units so that kidney patients will not need to be bussed long distances to a general hospital with a dialysis ward. As I suggested during the debate on the National Health Service and Community Care Bill, money going with the patient may have a beneficial effect in that direction, particularly when districts realise how much they are spending on kidney dialysis in regional hospitals.

Continuous ambulatory peritoneal dialysis has made huge strides and is running neck and neck with haemo-dialysis in the number of patients using it. CAPD allows the kidney patient to be free of machines and to live at home. Home-based haemodialysis machines achieve almost the same result, except that the patient must have a carer in attendance, or at least in earshot, all the time while he or she spends four to six hours hooked up to the machine. However, home-based dialysis, like CAPD, takes the pressure off hospital dialysis units and gives patients much greater freedom.

As my hon. Friend the Minister knows, dialysis requires the placing of two needles in one of the patient's arms, from which blood is drawn into the dialysis machine, cleaned by the dialyser, and then returned to the body. The arm being used for that purpose cannot be moved, so if the machine alarms, the helper must put matters right—as she does in linking the patient up to the machine and taking him off it.

A dialysis session lasts between four and six hours, so the attendant has to give up a fair proportion of the day to be available to the patient. All kidney patients on home dialysis receive an attendance allowance of £25. That may be enough if it is the husband or wife who helps, but not if the patient has to engage the services of a carer. My first plea to my hon. Friend the Minister is to discuss with our right hon. Friend the Secretary of State for Social Security whether more money can be provided. Some charitable funds are available in certain areas to help boost the money available to pay carers, but not everywhere. Few carers will work for much less than £25 per day.

When I first suffered kidney failure, I suffered—as others do—the attendant problems. In particular, I suffered from acute anaemia, as what was left of my kidneys was failing to secrete the substance that creates haemoglobin, except at a very low level—rather less than 50 per cent. of normal. I had the characteristic yellow-white face of the anaemic renal patient, and I was aware of my acute lack of energy and a loss of general well-being.

In 1988, my consultant asked whether I would be willing to be a guinea pig in clinical trials of what is in effect a wonder drug called erythropoetin, which aims to replicate the secretion missing from the kidneys of renal patients—and which could, he assured me, give me back my haemoglobin, my energy, and the colour to my cheeks. I agreed to join the programme, and today I would find it hard to be a kidney patient not in receipt of EPO, as it is known for short.

I am well aware that I am one of the lucky ones. I know that EPO is very expensive, and I know also that some regional health authorities will not allow it to be prescribed to any of their kidney patients because their budgets are already overstretched. But I cannot stay silent. Not every kidney patient needs or would benefit from erythropoetin. My consultant suggests that about 1,500 of the 8,000 patients on dialysis ought to receive it, but in Oxford where I am treated he has funds enough for only 50 per cent. of those who could benefit.

Elsewhere, the story is too often the same, yet I am told by so many, "Yes, we know that it is a wonder drug, that it can offer a dialysis patient a much-improved quality of life, and help him to return to employment—but we do not have the funds to pay for it." That is a heartbreaking message—as tough on the consultant who wants to prescribe EPO as on the patient who knows by hearsay what he or she is missing.

I appeal to my hon. Friend the Minister to re-examine that issue, and I ask him to consider this question: what is the point of creating wonder drugs if, when they have been developed, the medical authorities cannot afford to prescribe them? I know that I will be told that it is for regional health authorities to decide how they spend their budgets, and that it is for them to include or exclude something such as EPO—but surely the Department can earmark part of the money going to regions specifically for meeting the costs of new drugs, or hold back that money unless a region gives details of the drugs on which it is to be spent.

Something must be done as a matter of urgency—or EPO must be licensed and made available on prescription from local general practitioners, even if patients still come under hospital renal consultants. I am aware that the Department of Health quite rightly believes that successful transplantation is a better and less expensive treatment than dialysis, but it has to be accepted that not everyone can have a successful transplant. While there is a shortage of organs for transplantation, dialysis is the only remedy.

Naturally, that brings me to the subject of the transplant programme and the supply of organs. More organs are needed. We should applaud the increasing number of transplants that have taken place in the past six years, and the efforts that have been made to improve supply, but one cannot escape the ethical questions involved in transplanting pieces of the human body. Transplantation in my opinion is acceptable only when the organ is a voluntary gift from one family to another. To that extent, I am opposed to opting-out schemes, which mean that if one does not state that one's organs are not to be taken they can be plundered, whether the next of kin like it or not. However, I welcome every initiative to improve the supply of organs.

The audit carried out under the auspices of the Medical Research Council last year gave us a much clearer picture of how many potential donors arise in intensive therapy units. It came up with a figure of 1,700, which is roughly half the old estimate, and that clarifies how much more needs to be done.

I pay tribute to my hon. Friend the Member for Kettering (Mr. Freeman)—who was the Under-Secretary of State for Health—who organised a seminar last November, given by the Department, on the subject of the donor scheme and the constructive suggestions that came out of that meeting.

I wish to dwell on one idea—that of enhancing the kidney donor card scheme, or perhaps I should have said the organ donor card. The scheme could be more successful. The idea of a donor card is excellent. If one wants to give an organ, one carries a card to say so, and if anything happens, the card is there for the hospital staff to see and to act upon. It sounds so simple. However, the chance of the card going into the intensive therapy unit with the casualty is extremely slight, as the first thing that happens is that clothes are taken away before anyone is taken into the unit. Staff in the unit will not spend a great deal of time searching through possessions to see if the patients have a donor card, as they are concerned with saving life.

A consultant asked me to question the Department about how many times the donor card produced organs for transplantation. It was unable to give me an answer. That speaks volumes about the fact that the card is not working as we would wish.

Even if staff in the intensive therapy unit find the card, they only act upon it to the extent that they will then telephone next of kin to ask for permission to take organs. They do not only ask next of kin: they will almost certainly ask the husband or wife and other close members of the family. If anyone objects, the organs will not be taken. That seems to fly in the face of what the donor card system is meant to achieve. While there is no legal requirement for anyone to be consulted if the card is signed by the donor, I understand that the medical profession believes it has a duty to obtain family consent, or at least the consent of the next of kin, before taking organs, and I do not wish to argue with that.

That does not entirely invalidate the donor card, as it performs another important role. It encourages people to think about and to accept organ donation as part of everyday life, and it has been valuable. It is true also that too many card carriers have not told their families that they carry cards and therefore that they wish to donate their organs. I suggest to my hon. Friend the new slogan "Carry the card and tell your family."

If the card is not accepted by the medical profession as having the same legal imperative as a person's will—clearly, removing organs is of a different order from leaving goods and chattels—perhaps the solution lies in the donor card being countersigned by the next of kin. It would then be unnecessary for the transplant co-ordinator to telephone the next of kin, and it would mean an end to the emotional trauma that follows the death of a loved one, when those being asked whether organs may be taken are in the wrong frame of mind to consent. That so many people consent speaks volumes for the skill and diplomacy of transplant co-ordinators who are currently at work.

I go one stage further. I want my hon. Friend the Minister to consider the schemes in Wales and Derbyshire—Lifeline Wales and Lifeline Derbyshire; I believe that there is a similar scheme in Glasgow—whereby the names of all those carrying donor cards are stored on computers that are available to intensive therapy units. The name, address and age of a donor is placed on the computer register. Of course, if I have my way, the request to be a donor will have been made known to the next of kin. That system works in Wales. Lifeline Wales has a donation rate of 20 donors per million of population—the best in the country. There are more than 300,000 on the computer register, with a further 400 being signed up every week. The computer is connected to all intensive care units in Wales.

Lifeline Derbyshire is similar, except that it works on a computer at Manchester university, with a terminal situated in the Chesterfield royal hospital, and is connected to local hospitals in which there are intensive therapy units. Lifeline Derbyshire has produced a modified donor card, on which is added a form on which the information to be put on to the computer can be added. I understand that, like Lifeline Wales, Lifeline Derbyshire is proving to be effective.

Using either example, it is clear to me that putting the names of organ donors on computer is the way to make the donor card a real success. I have given my own opinion about the countersignature by the next of kin, because people responsible for Lifeline Wales agreed that that procedure would help. However, I ask my hon. Friend the Minister carefully to consider this procedure, even if it is only the donor's name which is put on the computer and the next of kin still telephoned.

I know that there are resource implications in the proposal but, if it was possible to put the names of people wishing to give organs—all those currently carrying donor cards; I am speaking not only about kidney donors but about all those who wish to give organs—on a national computer held by the United Kingdom transplant service or on regional computers held by the various regional health authorities connected to intensive therapy units, we might increase the number of organ donors, in line with the Welsh and Derbyshire experience. In turn, we might increase the supply of organs that are so desperately needed at this time.

I do not need to tell my hon. Friend the Minister I hat successful kidney transplants are a much more economical way of overcoming end-stage renal failure than dialysis or dialysis coupled with the use of erythropeotin. I therefore commend the idea to him.

12.14 pm
The Parliamentary Under-Secretary of State for Health (Mr. Stephen Dorrell)

I congratulate my hon. Friend the Member for Newbury (Sir M. McNair-Wilson) on securing this debate on an issue of great importance not only to him, but to the whole community. I appreciate the irony that my arrival at the Department of Health was prompted by the departure from Government of my right hon. Friend the Member for Worcester (Mr. Walker), with whom my hon. Friend the Member for Newbury and I share a link. I followed my hon. Friend the Member for Newbury as parliamentary private secretary to our right hon. Friend. My hon. Friend set a high standard which I sought to emulate—incompletely, I suspect.

It is a great pleasure to respond to the Adjournment debate initiated by my hon. Friend. Today, as always, his speech has demonstrated the depth of his experience and his understanding of the problems associated with the treatment of kidney patients within the National Health Service.

It is important to set the issues my hon. Friend raised within the context of the NHS treatment of kidney patients, which is one of the great success stories of recent years. The increase in the number of patients whose lives have been extended by renal care since 1979 has been considerable, both for patients on various forms of dialysis and for patients who have benefited from transplants. Both groups have increased substantially. In 1979, there were just over 6,000 patients whose lives had been extended by renal care. That figure has now risen to more than 16,000 patients whose lives have been saved by the NHS because of advances in renal medicine. That is a great success story, of which everyone associated with the NHS has every reason to be proud.

It is also important to say that we are not complacent about the future development of this aspect of care within the NHS. My hon. Friend mentioned the work sponsored by the Renal Association, which shows the scale of need for renal care in the community. The study suggests that we need to increase the number of new patients coming into renal support above the level already achieved, based on epidemiological research.

The Renal Association came to see me last week to talk about that and I complimented the association on the quality of its research, which I believe to be soundly based and to be an object lesson, from which I hope that others will learn, on how the new health authorities after the Health Service reforms next April should discharge their responsibilities for seeking to measure need and to establish the level of need for different types of care in the NHS. In that way, as in many others, those involved in the care of kidney patients have led the way.

My hon. Friend began by arguing the case for an extension of local dialysis units and he suggested that it might be a more appropriate way to treat kidney dialysis patients than to encourage them to come into large centres in hospitals. Ultimately, that is a matter for each health authority to decide according to the available resources and circumstances in its own area. That issue will certainly present itself in a new and acute form after next April, when the health authorities will be established as purchasing agents on behalf of kidney patients and they will seek to ensure that the treatment available to patients is the most appropriate for those patients. It is wholly possible that that development will occur after next April.

That change will impact to a degree on my hon. Friend's first request about the extension of attendance allowance payments to those who need carers to assist in the dialysis process at home. I understand my hon. Friend's argument, but have just one reservation about it. Other issues may argue against the provision of dialysis at home for patients who, in the normal course of events, live alone. My hon. Friend may well have suggested an alternative way forward when he referred to the need for local dialysis units rather than for assistance to be given for dialysis at home in the form of more generous attendance allowance payments. I simply enter that reservation.

However, that is ultimately a matter for the Department of Social Security, which, in these new enlightened days, has been split from the Department of Health. I shall therefore communicate with my hon. Friend the Under-Secretary of State for Social Security, who is just down the corridor from me, but in another Department. I shall write to my hon. Friend the Member for Newbury when my hon. Friend and I have had the chance to consider his suggestion in more detail.

The second of my hon. Friend's substantial points related to the future of the wonder drug which I shall call EPO, because, unlike my hon. Friend, I have not learnt to pronounce its name in full. I am very much aware of the tremendous advance that that drug represents for renal medicine and of the need to ensure that we can find a way to make it available to kidney patients just as, over the past 15 years, we have made available to kidney patients all the other advances that have been made, many of which are much more expensive than EPO. We must find a way of making certain that the drug is available to the patients who need it. There is no division between my hon. Friend and I on that point.

However, I am afraid that I do not accept my hon. Friend's suggestion that the way to achieve that is through some form of central funding of the local authority's need for that drug. Ultimately, central funding can be achieved only by top-slicing the money—to use the jargon of the Department of Health—that is provided by us to the regions, and from the regions to the districts.

In other words, if the Department of Health funds something centrally, less money is available for the regions and the districts to spend on their own account. That happens from time to time, but in my view it should happen only for the purpose of concentrating resources in areas where there might be some regional disparities. If, as is the case for kidney patients, facilities are spread fairly evenly across the country, there seems little point in top-slicing the budget of, for example, the Northern regional health authority simply to return to that health authority a roughly equivalent amount of money that will allow it to purchase the drug or any other form of treatment.

Therefore, I do not think that top slicing and central funding, which are two sides of the same coin, would advance the argument very far. However, I undertake to seek to work with the regions and the health authorities to ensure that, as far as possible, that drug is available. Following my meeting last week with the Renal Association, I have already asked to be given the up-to-date position about the availability of the drug, region by region. It is important that each region carefully assesses the clinical need for the drug within its own facilities and makes the appropriate plans to ensure that that need is met. That is the way forward, rather than attempting to centralise control at Richmond house.

Sir Michael McNair-Wilson

Perhaps my hon. Friend is not aware that a kidney patient who receives erythropoetin can go back to work. If a person with a manual job suffers kidney failure, he cannot normally work, but that is not the case for someone receiving erythropoetin. If the patient goes back to work, he starts to pay taxes and those taxes go into a central pool. My hon. Friend is right to talk about top-slicing that which would otherwise go to the region in total, but I am suggesting that, through erythropoetin, the Treasury might gain more money than my hon. Friend would be giving the regions. Perhaps that additional money could be considered to be part of the grant funding.

Mr. Dorrell

My hon. Friend, as always, advances a seductive argument. Unfortunately, it is one that he must ultimately address not to me but to my right hon. Friend the Chief Secretary to the Treasury. We have to work on the basis that the budget available to the NHS is fixed and is part of the public expenditure survey round. I am sure that there is no division between me and my hon. Friend about the enormous advance that EPO represents and the desirability of making it available. It is simply a question of mechanics and how that can be done. The correct way is to seek to work with the regions to eliminate any blockages in the system. I should add that that is another example of a blockage in the NHS management system. We shall seek to eliminate such blockages through the reforms that will be introduced next April.

As soon as we establish more clearly the principle that money should follow patients and that money should be directed to where patients need to be treated, problems which currently seem to represent substantial bureaucratic logjams suddenly seem simpler to resolve.

My hon. Friend's third point was about transplants. I accept the principle that he espoused, that it is preferable, both from a clinical and a financial view, to treat a patient ultimately by a transplant rather than on dialysis. I agree entirely with what my hon. Friend said against moving to a system of opting out of donorship. I do not believe that that represents the way forward.

Various options should be considered to encourage voluntary donorship of organs. I sought to do that at breakfast time this morning. I had been asked to attend the launch of a new balloon that is sponsored by two drug companies—Sandoz and Du Pont—to draw attention to the donor card system. On the way to the launch I made certain that I had my donor card with me because I was conscious that there was a risk—

Mr. Kenneth Carlisle (Lincoln)

I am glad that my hon. Friend survived.

Mr. Dorrell

I am, too. I wondered whether I would survive when the balloon collapsed on top of me. I thought that it was perhaps a new way of promoting transplants. The balloon is a serious attempt to attract media interest in the donor card system. I welcome that, and will do everything that I can to support it.

My hon. Friend correctly drew attention to the enormously valuable work of my predecessor on organ donorship. If I can do as well as he did to promote the cause, I shall be pleased.

My hon. Friend also mentioned some of the disadvantages of donor cards and suggested ways in which the system could be enhanced. In particular, he suggested that the card should be countersigned by the next of kin to avoid the problem of medical ethics that doctors are unwilling to use organs simply on the basis of a signed donor card. I should not like to become involved in medical ethics. They are not properly the province of politicians. However, I take note of my hon. Friend's point. Perhaps he would like to take up the matter with the appropriate medical authorities. When politicians start to advise doctors on ethical values, I suspect that we are getting into relatively deep water.

My hon. Friend argued the case for a central computerised register, a cause which he has espoused before and for which he is well known to be an enthusiast. We are not opposed to that idea, but, in view of the practical problems, the Government should not commit taxpayers' money to a central register unless there is clear evidence from the local schemes to which my hon. Friend referred that a register would be a cost-effective way of increasing the availability of organs for transplant. That was the conclusion reached by the working party chaired by Sir Raymond Hoffenberg which reported to us in 1987. We have implemented its main recommendations.

I am aware of the scheme in Wales to which my hon. Friend referred. I suspect that there are other factors in the Welsh experience in addition to the register which contribute to accounting for the improved donorship record there. Indeed, the previous Secretary of State for Wales may have played a part in that; I do not know. We are looking at the Welsh experience and the experience in Birmingham. Although I have not been informed that we are looking at the scheme in Derby, we shall do so.

We recognise the complexity of organ donation and accept the conclusion of the Hoffenberg working party that there is unlikely to be a simple answer to the shortage of organs. There is no panacea, but I hope that we have begun to pinpoint the real issues. As many of them are medical questions, the royal colleges have agreed to take them forward and we shall await the outcome of their deliberations with considerable interest.

  1. ROYAL ASSENT 68 words
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