HC Deb 21 January 1980 vol 977 cc162-74 9.50 pm
Mr. Tam Dalyell (West Lothian)

I thank the Under-Secretary of State for Scotland, the hon. Member for Aberdeen shire, West (Mr. Fairgrieve), for courteously agreeing to be present for an Adjournment debate on the shortage of kidneys for patients in Scotland. The hon. Gentleman knows that this has been an on-off, on-off Adjournment debate. I thank him for his courtesy.

I should not normally initiate a second Adjournment debate. However, it is now clear, because of the parliamentary timetable for the Abortion (Amendment) Bill, that it is unlikely that the seventh attempt that I have made to get a Ten-Minute Bill on the kidney opting-out scheme will materialise. My Bill is scheduled to come before the House on 15 February, but that day is likely to be devoted to abortion. In this place we must seize our parliamentary opportunities.

I use as my text a heading that appears in today's edition of the Glasgow Herald. It states: 'Kidney patients may die' warning". The article states: Patients requiring treatment on kidney machines in the West of Scotland may have to be left to die by the end of this year if health spending restrictions are not lifted, a leading kidney specialist said yesterday. Kidney disease sufferers over the age of 55 applying to be taken on for dialysis are the most likely to be turned away, said Dr. Douglas Briggs, consultant physician at Glasgow Western Infirmary's renal unit. I am not in any way criticising this Government on the ground of the cost of kidney machines and renal dialysis. The truth is that whichever party had been in power would have faced the same acute problems of costs. Figures given by the same Dr. Douglas Briggs on another occasion indicate that every kidney unit costs £5,000. The figures may vary from transplant unit to unit and from dialysis centre to centre, but Dr. Briggs' figure is £14,000 a year in running costs.

I have given an undertaking to the Minister that I shall not ask him to answer any specific question off the top of his head. However, he may care to confirm that it is a far more costly operation than anyone might imagine. Therefore, it is totally unrealistic to suppose that dialysis and the amount that we can do for kidney patients for treatable cases is not in some sense related, whether we like it or not, and whether or not it is delicate to say so, to cost.

The article continues: Whether the life or death decisions have to be taken will depend mainly on the amount of money the Government makes available to the Greater Glasgow Health Board this year. Although Glasgow's three renal units, at the Western, the Royal Infirmary and Stobhill Hospitals have not been cut, they had to expand to cope with increasing demand, said Dr. Douglas Briggs. They serve an area stretching from Oban to the Borders and across country half way to Edinburgh. That includes part of my constituency. The article states: 'At present there are 150 patients on dialysis, and we take on 150 new patients a year,' he said". Again, these are He continues: We are coping now, but the situation is far from satisfactory. The unit is overcrowded and seriously ill patients are not being admitted as quickly as they should be, and we are having to send patients home before they are fully recovered. If we are allowed to expand again soon, we will probably be able to cope. But if the present financial restrictions continue we will have to turn patients away. Priority will be on medical grounds. Over 60 is the present upper age limit—though it is not really rigid—on the basis that someone aged 65–70 is not usually fit enough to undergo dialysis. We would have to lower that limit to 55, but there is no threat of having to turn away young people. Britain's performance in providing kidney machines—for 61 patients per million of population—puts her twelfth place out of 27 in the European league, alongside countries like Spain, and even this level has needed charity as well as the National Health Service. I come to the emphasis put by Dr. Briggs and many others on the need for more kidney donors. In the year ending 30 June 1978, 761 cadaver kidney transplants were performed in the United Kingdom, plus 122 from live donors. At the end of October 1978, 1,177 were on the waiting list for kidney transplant operations.

At first sight, it might appear that a relatively small increase in the number of donors available would enable all those on the waiting list to obtain a kidney. However, as the Minister knows, it is not as simple as that. The kidney that becomes available may not be suitable because of tissue matching or may be damaged already due to the late stage at which the kidney was taken from the donor. It is suggested that 50 per cent. of patients each year who need a kidney will not receive one and that 15 per cent. of those who receive a kidney will receive one that has been severely or almost irretrievably damaged.

I cannot emphasise too much that it is crucial that any organ taken is taken within half an hour of clinical death being established. If it is left longer, deterioration sets in and the organ is of no use. We should make decisions about these matters before any unhappy events and not at the time of maximum grief, when people are least able to come not even to a rational decision but to the sort of decision that they would wish to take.

The Minister, through his work in the Scottish Office and the Department of Health, may know Professor Oliver, the distinguished Edinburgh surgeon, and his wife. They tragically lost their son. They are acutely aware of the need for kidneys. They have authorised me to say that it is a matter of regret for them that in their crisis, because it was a bolt from the blue, they did not think to ask about the question of kidneys until it was too late. That is natural enough, because at a time of maximum grief one is thinking of other things. It could be said that it is up to the doctors to put such a question. Consider the amount of energy—not to say anguish—that is needed from doctors who may have been fighting to save a life to ask the awful question "Can we have the organs of your loved one?" of some bereaved father and mother who are absolutely shattered by the death of their child, possibly in a motor cycle accident. It is not the time for that sort of question to be asked.

I am fully aware that there is another side to the argument concerning freedom. I have to take into account the answer given to the hon. Member for Bath (Mr. Patten) on 4 December by the Minister for Health. The Minister, in referring to Lord Smith's report on organ transplants, said: The Lord Smith working party advised that the best way of increasng the supply of kidneys for transplant was to make doctors and nurses more aware of the need for kidneys and the procedures to be followed. The code of practice will do this. We are arranging for it to be widely distributed within the NHS. I wish Ministers the best of luck in distributing codes of practice, as I wished the right hon. Member for Leeds, North-East (Sir K. Joseph) luck when he was Secretary of State for Social Services and brought in the donor card scheme.

It being Ten o'clock, the motion for the Adjournment of the House lapsed, without Question put.

Motion made and Question proposed, That this House do now adjourn.—[Mr. Cope.]

Mr. Dalyell

The difficulty is that people are reluctant to carry donor cards. I am glad that the Government Whip carries a donor card, but, according to Marplan, he is one of only 5 per cent. or fewer who do. Estimable though he may be, most of us either do not carry a card or leave it in another pocket, from a deep-seated human belief that accidents happen to other people and that if they happen to us they will happen some time in the future. Most of us do not like readily to contemplate our own demise. The donor card scheme and such estimable ideas as Medicalert and stamps on driving licences and even the suggestion of having tattoos—I do not agree with that because I do not think that puncturing the skin is the right method—will not provide the number of organs required.

The Government may refer to the survey "Public Attitudes to Kidney Donation". In the official Government answer to the planted question—I do not complain of that—on Lord Smith's report on organ transplants, the Minister said: The attitude of the general public towards kidney donation is also crucial. We were most encouraged to see from the Marplan survey that most people interviewed knew about the need for kidneys and sympathised with the idea of the kidney donor card scheme. But we accept that the scheme needs to be improved and more widely publicised. Successive Governments have made every conceivable effort to publicise this scheme. Lack of publicity cannot be the problem, because the press has played an honourable part. Newspapers have done everything they can be expected to do, yet we are still short of 1,300 kidneys for treatable cases each year.

The Minister went on: An 'opting-out' system has been suggested as an alternative to the kidney donor card scheme. The Marplan survey showed much strong opposition to the suggestion, even from people who held donor cards and were therefore fully committed to the idea of kidney donation. The Lord Smith working party shared this view. We cannot therefore support the introduction of legislation at this time to permit an 'opting-out' system."—[Official Report, 4 December 1979; Vol. 975, c. 169.] The Marplan survey itself was something of a give-away. In paragraph 4 it undermined the authority of its own report: Additionally, when specifically told about the current shortage of kidneys, respondents tended to claim that this would increase their inclination to donate. Similarly, when told about the current shortage of kidney machines and about the disadvantages to the patient of this form of treatment compared with a transplant, respondents' attitudes towards donation tended to become more favourable. In other words, the more people know about how necessary an opting-out scheme is for those who have to go through the agony of renal dialysis if they are to have any decent life at all, the more likely they are to donate.

On reason why I go on and on proposing Bills on this subject and taking any opportunity to debate the matter is that, unless the scheme is argued out as widely as possible, there will be no chance of bringing public opinion around to recognising that such a scheme, although some infringement of freedom, at least is a practical and far from terrifying prospect. This is recognised by, for example, the South-East Scotland Kidney Patients Association. I should like to read a letter of 17 December 1979 from the secretary, Mrs. Jean Scott, of Clerwood Park, Edinburgh. She says: The above association would like to convey to you our heartfelt thanks for your efforts to get the Bill through Parliament for the Kidney and Donor scheme to be an 'opt out' one. As an association we would assure you of our support in any way appropriate, and I am sure you could also count on the support of the Scottish Federation of Kidney Patients and also the British Federation. We are asking all our members to write to their local M.P. to urge them to support the Bill and would be prepared to have a petition signed if necessary. I think you can understand what it would mean to us if more kidneys were available and we wish you luck in your campaign. Mr. Harry Thomas, of the National Federation of Kidney Patients, writes: The Federation represents 30 kidney patients' associations in England, Scotland and Wales and its governing council and executive committee is comprised entirely of members of these associations. This is because we believe that the patients are more aware of problems involved in kidney treatment than some of the well wishers who do not always understand our real needs. I myself have been involved in this sort of activity since I became a dialysis patient 12 years ago, and although for medical reasons I cannot have a transplant I know how important it is to encourage donors. A plentiful supply of kidneys means not only more transplants, but better transplants, because the more kidneys there are available the better the chance of a good match. Those who are most affected feel most strongly about it.

I feel entitled, because I have his permission to do so, to read a letter written by a distinguished assessor for the Central region, Mr. William Lawson, to Miss Mary Marquis, following a television interview that created some controversy. The letter has not been replied to, but I have permission to use it in public. Mr. Lawson states: Dear Mary, I regret very much the attitude you adopted over Tam Dalyell's efforts to have an opt-out kidney donor scheme. I am personally a renal dialysis patient, and have been so for over a year now. For medical reasons I have been deemed unsuitable for a kidney transplant, so I am condemned for the remainder of my life to dialyse myself twice or three times per week. I cannot even begin to explain to you what this means, but I have no choice, and all I can do is to accept my fate and do my best not to inflict my burden on my family. What gives me even greater concern, however, in my contact with other patients, younger than myself (I am 47 years old), who are suffering greatly and who have only one hope in life, and that is to have a successful transplant. Because of the limited choice of kidneys offered for transplant, and due to inaccurate matching, there are still many failures. Needless to say this can be a crushing blow to a dialysis patient, the despair is unimaginable. My own view is that most people would be more than happy to allow their organs to be removed after death to alleviate the suffering of others here on earth. Death is very final. Tam Dalyell's Bill had very little chance of success in the first place, but after your efforts with phrases like 'latter day Burke and Hares' and 'body plundering', it has been effectively killed off. I may say I think it quite wrong for a news reader in a privileged position facing millions of people to adopt an attitude and influence decisions affecting society. I have mentioned this because I think there is no doubt that Miss Marquis's reference to Burke and Hare attitudes has done great damage in Scotland to the idea of opting out. Let me say here and now that there is absolutely no comparison whatever with Burke and Hare or body plundering. The truth is that there are many treatable cases, with productive lines in front of them—not old people who might die anyway—who, for want of matching tissue, either go on this agony of renal dialysis, if they are "lucky", or die a premature death.

This is not a matter for highlighted references that may be all right for television commentators but do not reflect the agony of those involved.

I should like to quote two more letters, One is from Mrs. Mary Hamnett, of Aberdour. She writes: I would like to say how much I support your efforts to make the donation of a kidney an 'opting out' obligation for the apathetic as opposed to a 'positive move' made by the normally public spirited. I have a donor card but, quite frankly, if I were in a car crash, it is doubtful if my card, if found, would be found in time. In fact, the whole question of 'organ' donation should ideally be placed on an 'opting out' basis. I feel strongly about this, as personally I cannot imagine anything worse than being plugged into a machine. There are obviously strong legal objections but I do feel that if possible those who are apathetic about such things as donor cards should be forced into some sort of decision. I suppose that the trouble is that you cannot cover all of the population involved—it would need something like the voters' roll in order to cover all households—but think of the saving in suffering and money. That is the kind of view that has been put to me very often—that we have to think, as I have said previously, of the saving in money, because we all know that National Health resources are finite. We also have to think of the burden on the families of those who undergo the agony of dialysis.

I now quote from a letter from Mrs. Mary Fiddler of Barnton Park Gardens, Edinburgh. She writes: I listened with interest to you this morning on a programme where kindney donors were being discussed. Time seems to be one of the most important factors. If a patient who is a willing kidney donor dies in hospital, the doctor is there, the kidney is there and the evidence should be there also. Would it be possible for all kidney donors to have a special tattoo, perhaps on the sole of the foot, to enable doctors to act without delay, whenever the patient was found to be clinically dead? I insist that before any organ is taken clinical death must be established by at least two doctors. This was the view of every serious report on the subject, including that of the Maclennan committee, which reported 11 years ago.

I do not expect, being realistic, that the Government, after these public opinion surveys and after the Lord Smith working party report, will be able either to help private Members' legislation through—let alone on the basis of a Ten-Minute Bill—or produce immediately legislation of their own.

This is not the occasion on which to indulge in party politics and to talk on a political basis about there being less money for the National Health Service as such. That is not my kind of argument. The kind of argument that I would further adduce is that, given that this kind of organ transplantation operation can be done, first, with a much greater degree of success than ever before, secondly, that there is much more awareness of it and much more demand for it and, thirdly, that the availability of matching tissue increases greatly the chance of success, in these circumstances the Government should reflect very deeply on the issues involved and not be over-influenced by the Marplan results.

I see that the hon. Member for Fulham (Mr. Stevens) has very courteously entered the Chamber, and I think that I know why. During the recess he sent me a very courteous letter from one of his distinguished constituents, at, I think, the Hammersmith hospital—a man who was involved in transplants and who took a different view. I would be less than candid if I did not say that there are, indeed, distinguished surgeons who are concerned about the doctor-patient relationship and, indeed, not only the hon. Gentleman's constituent but that very distinguished surgeon, Professor Sells, of Liverpool. On the other hand, there are those, such as Professor Roy Calne, of Cambridge, and, indeed, many others, who have been driven to the conclusion that only if a contracting-out scheme is introduced is there any chance of getting anything like the number and range of matching tissues that are needed.

Therefore, I hope that the Government will continue to think hard about these issues—not, to use Mills' phrase, to go into any kind of deep slumber of a decided opinion on the basis of a Marplan survey which I challenge and a report of a working party under Lord Smith of Marlow that serious people must take a good deal more seriously.

I am not demanding tonight that the Minister from the Scottish Office should give any long answer. It would be unreasonable, on a second Adjournment debate, to ask him to do so. What I ask the Minister is that he and his officials should reflect carefully on the kind of arguments that have been put forward and that, at their convenience—preferably before 15 February, when my Bill may come up—they should at least state in a letter what the Scottish Office attitude is likely to be to these difficult issues.

10.15 pm
The Under-Secretary of State for Scotland (Mr. Russell Fairgrieve)

I think that all hon. Members know of the great and continued interest of the hon. Member for West Lothian (Mr. Dalyell) in this subject. Straight away I say to him how much I appreciate his description of this "on-off" situation tonight. It is only a matter of an hour or so ago that he mentioned to me as I was passing—on my way, I hoped, out of the House—that he would be having his debate. Therefore, I have risen to speak without the normal Government brief and without the officials who are usually present in the Box. However, I am glad to do so and I hope that I shall be able to make a small contribution to the debate.

As I say, I know of the hon Member's interest in this subject, and I think I can say that he knows mine, which is not dissimilar.

Mr. Dalyell

Yes, certainly.

Mr. Fairgrieve

We are both card-carrying Members. Both my wife and I had ourselves down in our wills for spare part surgery or anything of that nature long before I had the privilege of becoming a member of the present Government. Therefore, I say straight away that the hon. Gentleman was very fair tonight in warning me and not expecting to get a detailed reply.

What I can add to what the hon. Gentleman has said is that, as he knows, there are to be no spending cuts in the Health Service in Scotland. Therefore, dialysis is not affected in any way—unless, of course, costs rise to such an extraordinary degree that everything is affected. But I repeat that there are to be no cuts in spending in real terms in the Health Service. I accept the hon. Gentleman's astronomical figure for the running costs of dialysis and will have the matter checked.

I know of the overcrowded demand for the service. Before Christmas, my next-door neighbour's wife had both her kidneys removed and has to go to Edinburgh twice a week. I have also visited the centre in Glasgow, and it is heart-rending to see these people who have to use these machines for three hours twice a week. It is a trying, abnormal and sad existence.

The hon. Gentleman is probably correct in saying that we are twelfth in the European league, and I am sorry to hear that. I also accept that we need more kidney donors and that there are problems about non-suitability and late availability. The lapse of half an hour may make it too late.

The hon. Gentleman also made a valid point about people being contacted at a time of maximum grief. Not long after my election to Aberdeenshire, West, a constituent telephoned me in great distress. She had been contacted by the medical profession 10 minutes before being told by the police of her husband's death. What an impossible situation!

I accept the need for change. The hon. Gentleman knows that we are changing the size of the donor card. The present paper card is not being carried. The edges become frayed and the colour comes off. We are producing a more expensive plastic card, which is the same size as a credit card, with information on the bottom about who should be contacted.

Doctors can also help a great deal by getting in touch with their colleagues.

It is incumbent on the Government to give the hon. Gentleman's remarks detailed thought to see whether, because of the influences that he mentions, such as media, the Marplan survey of the opt-out plan was accurate. With the report in their hands, however, the Government cannot make another decision without considering the matter thoroughly. I also know of Lord Smith's report on organ transplants, and we shall naturally consider that.

To answer the point that I believe the hon. Gentleman is primarily concerned with, although I cannot speak on behalf of the DHSS south of the border, I assure him that his remarks and my reply will be reported to the DHSS. I shall ask that Department to consider his remarks seriously, and at the Scottish Office we shall certainly do so.

I cannot commit myself to an answer on the controversial opt-out plan to which the hon. Gentleman has been drawing the attention of the House for some time, but in the Scottish Office we shall consider what we can do to bring to the attention of the public the tragedy and suffering of these people. We do not realise what life is like for those who suffer that three-hour, unpleasant, uncomfortable procedure, knowing that it will happen again in a couple of days. We wish to do everything possible to make more kidneys available.

As the hon. Gentleman probably knows, there is a higher awareness of the scheme in Scotland than there is south of the border. I had the privilege of meeting the lady in Scotland who had a kidney transplant and afterwards gave birth to twins on Christmas Day. That gave us a great fillip and terrific coverage for the scheme. I regret that it should have come about that way, but it helped us, and we have a higher awareness of the problem.

I thank the hon. Member for giving me as much notice as he could of the debate. My interests are his. Within the constrictions of being a member of the Government, I shall do what I can to improve the lot of those who are suffering from this sad, serious and devastating complaint.

Mr. Dalyell

I thank the Minister for his concerned and caring reply. In all conscience, it is as much as I can ask for in a second Adjournment debate. I was moved by the example that he gave of the wife who discovered from the medical authorities of the death of her husband 10 minutes before the police informed her.

That is the sort of terrible situation that can arise. It would be simple to contact a computer in Bristol to find out the necessary information and make a decision well before that sort of awful grief blockbuster occurred. One can imagine the grief of that poor woman when she was asked the terrible question "Can we have your husband's organs?" before she knew that he was dead. That is the sort of case that makes some legislation, not necessarily my Bill, imperative in the view of many hon. Members.

Mr. Fairgrieve

I appreciate and thank the hon. Gentleman for that intervention.

Question put and agreed to.

Adjourned accordingly at twenty-seven minutes past Ten o'clock