Orders of the Day — Chronic Renal Failure (Home Dialysis)

– in the House of Commons at 12:00 am on 8th August 1972.

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12.55 a.m.

Photo of Mr Christopher Woodhouse Mr Christopher Woodhouse , Oxford

I have sought this brief debate to raise a particular case of hardship in my constituency, which also illustrates a general principle affecting other sectors of the National Health Service. I emphasise at the outset that I make no criticism of the hospital concerned, whose staff have been admirably helpful. Nor do I make any criticism of the regional hospital board, which has been as generous as it can be within the regulations. Nor, certainly, do I make any criticism of the Minister's Department. Indeed, I would much rather see a Treasury Minister here to answer the debate, because it is essentially a matter of finance that I wish to raise.

The case concerns Mr. N. R. Jones, who lives on the Cutteslowe Estate in Oxford. His daughter, who will be 19 this month, suffers from a chronic renal disorder which necessitates haemodialysis treatment. Originally, from May last year, she was treated three days a week, which is the normal type of treatment, for 15 hours at a time in the Churchill Hospital in Oxford. Now, she is having the same treatment at home, at present on only two days a week, for medical reasons, but this may possibly have to be increased again to three times a week in certain circumstances.

The regional hospital board has provided all the technical facilities for this treatment at home. It has built a special bedroom detached from the house, which I have seen. It has installed all the apparatus necessary, and has trained Mr. and Mrs. Jones and their daughter to use it. All of this is not in the slightest degree a matter for complaint. Indeed, it is beyond all praise. I believe that there are few countries in the world where such home treatment would be possible. A specialist whom I have consulted tells me that the United Kingdom certainly leads Europe, and probably the whole world, in the practice of home treatment for kidney patients, and this is a matter for congratulation.

The hardship arises only in the matter of cost. It is obviously impossible to put any price on the time and skill of the parents; nor would they want it. The fact is, however, that they are providing substantial relief to the National Health Service. The father is replacing some of the time of nurses, a little of the time of doctors, and some of the time of administrators and technicians, to the extent of about 50 hours a week. The mother takes care of the diet of her daughter and the laundry and cleaning which would otherwise fall to the responsibility of the hospital staff. Neither parent can ever go away for a holiday, not even for a single day. This is simply matter for the record, not by way of complaint.

What is unreasonable, however, is the additional cost falling on the family which would otherwise fall on the National Health Service. There are several items, but the largest and most important is the constantly rising cost of electricity. Here are some figures to illustrate this. The girl at present receives £7·65 a week. It will go up to £9 in October. That figure combines her sickness benefit and social security. It is certainly not in itself an ungenerous sum. She does not qualify for the constant attendance allowance because she needs only intermittent attention a few days a week.

Additionally, the family receives an allowance for electricity amounting to £6 a quarter, which has just gone up by 5 per cent. to meet the rising cost of electricity, plus a further 50p a week in the winter. This is supposed to cover the extra cost of operating the machine, and no doubt it does, but there is far more to the treatment than just the operation of the machine. I leave out of account certain unavoidable incidentals like the cost of a telephone and transport from time to time to and from the hospital.

The additional items which impose a load on the electricity bill are these: the process of water softening, which occupies 60 minutes a week; the process of rebuilding the artificial kidney, which also occupies 60 minutes a week; the separate laundering of the bed linen, which takes 120 minutes a week; the process of sterilising the instruments and utensils in boiling water, which takes another 120 minutes a week. Above all, there is the heating throughout the operation of the machine, which varies from 30 to 50 hours a week. This heating is necessary not only for the patient's comfort, but also for the maintenance of the machine in good order, because if the room temperature falls below a certain level the machine will break down.

I think that it is clear that all these items must add up to a formidable extra use of electricity, which is an indispensable part of the treatment, but for which no allowance is made unless the family is so badly off to be able to claim supplementary benefit. The actual cost can be worked out very roughly from a comparison which I have made between the family's electricity bill before and after the treatment began. For a six-month period at the beginning of 1971 the bill was about £28. For a similar period at the beginning of 1972 it was £70. The treatment began in October, 1971. Apart from the increased price, the difference of £42 is wholly attributable to the treatment, and towards this difference it can be calculated from the figures I have already given, that the family received less than £20—in other words, less than half the extra cost.

It is immaterial to my argument—it is not, of course, immaterial to the family—whether it can afford that extra cost. It is immaterial, because the difference in costs represents a direct relief to the Health Srvice, whether or not it is within the means of the family. I mention its financial position without prejudice to that principle, that in fact the Health Service is being relieved at its expense. In fact, it would be wrong to pretend that its financial situation is desperate, though that might very well not be true in other cases of the same kind. Until recently, the daughter was able to earn a small sum from a part-time job. Her mother is in employment, and the father had a good job as a building foreman, so there was no question of claiming supplementary benefit. But now the daughter is unable to work at all, and the father recently lost his job owing to the difficulty he had in time-keeping, which in the circumstances is very understandable. I was not surprised to get a letter from him last month, from which I should like to quote. He wrote: With an illness like this one must get married to it. My daughter and I are very much a close-knit team. One cannot approach it in a matter of fact way, you have to be vigilant at all times; you cannot afford to relax. After all you have a person's life in your hands. In this respect my daughter's life is more precious to me than all the positions in my life, so I do not think I will bother to look for another job, for the same thing to happen again. Since I am saving the State money by nursing my daughter I don't see why they should not keep me. I am glad to see that he thought better of it and got a new job, but he feels, and I agree, that it is wrong that such a heavy cost should fall on him for relieving the National Health Service.

This is not an isolated case. There are probably others worse off, especially in cases where the patient is himself the family breadwinner. One may well ask how widespread cases of this kind are. I understand that the incidence of kidney disease requiring treatment varies in different parts of the country, from under 20 per million of population a year to over 40 per million, the chief difference depending on the age limit adopted, whether it is set at 45 or 55. In the Oxford area, the figure is, I am told, 14 per million per annum, which implies that fairly strict criteria are applied.

But what is agreed by all the specialists is that home treatment is the best course. It is medically best, because the mortality rate is less; it is socially best for the patient; it is cheapest for the National Health Service; and it allows treatment on the largest possible scale in economy of use of machines and beds.

In the Oxford region, for example, 80 patients are now on home treatment. The Churchill Hospital has only six beds available for such treatment which by doubling up can be used to provide for 12 patients. The aim of the Churchill Hospital is therefore to use hospital treatment only to train patients and their attendants so that they can provide subsequent treatment at home. With many more patients awaiting treatment, that is clearly the best and most desirable course.

No one expects to make a profit out of doing so, but equally it is clearly wrong that a family's standard of living should actually be depressed as a result of relieving the NHS in this way. One fairly simple remedy suggests itself in this case, which would be to install a separate meter in the treatment room and make all the sums on that meter a charge on the NHS. But this would still leave some unavoidable costs uncovered, to which I have referred—for instance, occasional transport and a telephone.

Another possibility would be to enlarge the scope of the constant attendance allowance, which would cover such costs as transport and telephone, but I think that would be unsatisfactory and open to dispute in other ways. I do not wish to dogmatise on the remedy. I am sure my hon. Friend will look at this problem sympathetically.

I conclude with one more general observation. Answering a parliamentary Question on this subject on 13th June, my hon. Friend affirmed the excellent principle that … we want people to be treated at home as far as possible."—[OFFICIAL REPORT, 13th June, 1972; Vol. 838, c. 1245.] Home treatment is undoubtedly preferable in this and other cases, as my hon. Friend also said then. I am sure this is not the only case under the NHS in which what is possible could, with a little carefully calculated generosity, be pushed a good deal further.

1.10 a.m.

Photo of Mr Michael Alison Mr Michael Alison , Barkston Ash

I have listened with great care to what my hon. Friend the Member for Oxford (Mr. Woodhouse) said and perhaps I could begin by expressing my appreciation for the courteous and most helpful way in which he furnished me in advance with considerable details of what he intended to say. Before dealing with the particular case he has raised I should like to say something about dialysis provision generally since it is important that these matters should be seen in perspective.

As my hon. Friend knows, chronic renal failure is inevitably fatal if untreated. In the past thousands of people have died—some at quite early ages—because no form of treatment was available. It is only within the last decade that the situation has changed—to be precise since 1965—when results of research work in America showed that maintenance dialysis was possible for the treatment of the terminal renal failure and would allow a return to reasonable health in selected patients. In the light of this development my Department called a conference of doctors under the chairmanship of Lord Rosenheim. This conference concluded that intermittent dialysis for chronic renal failure was an established and effective form of treatment which should be developed in this country as rapidly as was compatible with proper training and a high standard of patient care. A working party of medical experts was then set up to advise on clinical policy and the development of equipment. This working party recommend as an initial aim the establishment of 10 to 20 main centres in England and Wales each having at least 10 beds capable of maintaining 25 to 30 patients on twice-weekly dialysis, where staff would be trained and research carried out.

The problems associated with setting up this new service in hospital were considerable. The service is expensive—the cost of a machine alone is about £2,000, to which must be added the cost of building and engineering works required. The annual maintenance per patient is up to £2,500. There is the problem of finding enough qualified and trained staff to do the job. Haemodialysis is a highly complex type of treatment and each patient requires support from a skilled team of doctors, nurses and technicians. There is also the problem of infection including the risk of hepatitis which affects not only the patients themselves but also the staff coming into contact with them.

Nevertheless, despite these difficulties there are today no less than 39 units in operation in hospitals in England and Wales, and the latest available figures show that 526 patients are being maintained on dialysis in these units. But we have not stopped there. As the techniques of haemodialysis were developed, the equipment became more self-contained with built-in fail-safe mechanisms and it was possible for patients to be trained to carry out the procedure, largely on their own, and with little in the way of skilled assistance.

A pilot trial was carried out which proved successful and the working party advising the Department on the treatment of chronic renal failure recommended that this was the treatment of choice for increasing the number of patients on regular haemodialysis. Steps were taken to provide facilities under the National Health Service with such success that there are now about 750 patients on home dialysis in England and Wales. I need hardly say that it is in the interests of patients to be at home as my hon. Friend has succinctly pointed out. This is what everyone wants. This is why we have developed home dialysis provision and it is in this context that I want to deal with the specific points my hon. Friend has raised.

Home dialysis is essentially a hospital-based service, and the staff of the main centre where patients are trained retain ultimate clinical responsibility. It is still an expensive service, although not in hospital. The hospital has to meet the cost of providing, installing and maintaining the dialysing equipment for the patient's use in his home. The hospital meets the cost of supplying all the drugs, dressings, concentrates, etc., necessary for the patient's treatment. The hospital pays for the electricity used by the artificial kidney machine. The hospital also pays for the cost of installation and rental of a telephone if one is not already available to the patient. In all, it costs about £2,000 to install a patient on home dialysis and the running costs met by the hospital amount to about £1,500 per annum.

My hon. Friend might like to know that between 1966 and 1961 £1·3 million has been allocated for the capital cost of providing for dialysis in hospital and at home. Running costs total between £2 million and £2·5 million a year, roughly half of which is for hospital and half for home dialysis patients. I mention these figures because I think it is important to put on record the not inconsiderable sums devoted to this service direct from the Exchequer—and I hope my hon. Friend will not be too hard on the Exchequer—to provide facilities for what is in effect a very small number of patients, and patients who, had they been similarly stricken a decade ago would certainly not be alive today.

Apart from this expenditure, other costs are met by local health authorities which, exercising their powers contained in Section 12 of the Health Services Act, 1968, are expected to provide for the patient a room large enough to contain the equipment, the necessary stores, dressings and fluids, etc., and the patient's bed. A sink with a good supply of water, adequate electrical fittings, a waterproof floor and washable walls and ceiling must also be provided. This provision is normally provided by adapting a room, or adding a room to the patient's existing home. Where this is not possible, a prefabricated unit to house the equipment, may be provided. In some cases, it is necessary to re-house the patient. The cost of a home adaptation can range from £200 to over £1,000. The cost of a prefabricated unit is over £1,350.

As with the other services provided under Section 12 of the Health Services and Public Health Act, 1968, the local health authority may make a charge to the patient for the adaptations carried out or the special unit provided. Not all authorities choose to do so, but where charges are made the patient's means must be taken into account. Authorities are expected to exercise their discretion in the matter of charges to avoid any undue hardship or worry to the patient and his family.

Whilst on the subject of costs and financial assistance, I should perhaps mention that all dialysis patients are exempt from prescription charges by virtue of the fact that they have a permanent fistula. They are also, of course, eligible for the family income supplement and are covered by the Supplementary Benefits Scheme governed by the Ministry of Social Security Act, 1966, which guarantees a minimum level of income to people aged 16 or over who are not in full-time work.

Under the general discretionary power given in paragraph 4(1)(a) of Schedule 2 to the 1966 Act, the Commission, when determining the weekly rate of supplementary benefit to which a person is entitled, can make allowance for any essential extra expenses the person may have—for example, the additional cost of a special diet, extra expenses of heating, and so on.

In the case of dialysis patients, special arrangements have been made to ensure that a person receiving supplementary benefit has sufficient income to provide for any special diet involved. Additionally, the extra heating needs of these patients can be provided for by means of a special allowance related to individual circumstances. The Commission cannot, however, help a haemodialysis patient who is, or whose husband is, in remunerative full-time work, because Section 8(1) of the Ministry of Social Security Act excludes such persons from receiving supplementary benefit.

It is clear from what my hon. Friend has said that in the particular case which has arisen in his constituency, the family concerned have benefited considerably from the financial help available to dialysis patients. If I understand my hon. Friend aright, he is now asking that an allowance should be made to meet the additional cost of electricity beyond that consumed by the dialysis machine itself and that some form of compensation should be made available to families whose standard of living is otherwise depressed as a result of relieving the National Health Service of the cost of providing hospital dialysis.

My hon. Friend lays some emphasis on the fact that patients on home dialysis are relieving the Health Service, and he uses this as a basis for pleading for further financial support for home dialysis patients. I must confess that I am rather surprised that he should see the position in this way. It is not true to say that the hospital service saves money by providing home instead of hospital dialysis. The truth is that any relief of resources of the National Health Service in one direction enables an enhanced or expanded service to be provided in some other direction. It is not a saving in the sense that the money is then put away in a kind of reserve. My hon. Friend will know that hospital authorities work on limited budgets—we would like them to be unlimited, but they are limited—and to the extent to which funds are not available, services cannot be provided or have to be restricted. In practice the provision of home dialysis has simply meant that better use is made of the funds available for patients suffering from chronic renal failure and more patients can be treated—not that there has been any savings as such, in the sense of funds and resources kept idle and not applied. To the extent to which the use of funds is not optimised in this way the availability of facilities to other patients is consequentially reduced. To the extent to which the cost of provision for chronic renal failure is increased by one means or another, something else in the National Health Service must suffer—possibly, even, marginally, the candidate for home dialysis himself.

It would also appear from what my hon. Friend has said that he feels that the cost of treatment to the patient should be the same whether he is at home or in hospital. But I hope that on reflection he will agree that acceptance of this concept would introduce a new principle into the National Health Service which would have the most serious and widespread repercussions. We have already gone a long way in helping dialysis patients and I cannot readily see a case for treating them exceptionally to this extent.

In any event I do not think the question of costs to dialysis patients can be looked at in complete isolation. The advantages of home dialysis must be looked at in the round. As I said earlier, the great advantage of home dialysis, so far as the patient is concerned, and one of the main reasons why we have encouraged it, is that it enables patients to lead a more normal life. It is a good in itself. I do not think this facet can or should be underestimated.

Patients are able to dialyse themselves at times most convenient to their pattern of life. They are relieved of the necessity to travel to hospital two or three times a week and remain there overnight. They have a better chance of keeping in regular employment: 90 per cent. of patients on home dialysis return to work compared with only 78 per cent. on hospital dialysis. I am fully aware that some of these unfortunate people may suffer a loss in earning capacity as a result of their condition, but the extent of this is likely to be less when they are maintained on home dialysis. Furtherfore, statistics show that patients on home dialysis have a significantly better chance of survival than those on hospital dialysis.

There is also much less chance of home dialysis patients contracting hepatitis and they present less risk to others. As I mentioned earlier, renal failure patients are particularly vulnerable to viral hepatitis and once infected may remain a continuing source of infection to other patients and the staffs of their dialysis unit. My hon. Friend will probably know that an expert committee under the chairmanship of Lord Rosenheim was set up in 1970 to examine this difficult problem. Its report, a copy of which is available in the House of Commons Library, makes numerous recommendations designed to minimise the risk of infection and to contain it should it arise. Among these is the recommendation that dialysis patients should be transferred as rapidly as possible from the hopsital unit to the home after suitable training has been given to them.

One of the most important objects of providing home dialysis is to enable the patient to be self-sufficient. With this in mind, patients are taught to prepare the equipment, handle the machinery and generally to acquire confidence in dialysing themselves. They are also taught how to deal with emergency situations. Normally a patient's dialysis is carried out at night while the patient and the household generally is asleep. There are built-in safety mechanisms to the machine, so that if anything untoward occurs the patient is awakened by an alarm system. It is nevertheless important for someone to be available in case of an emergency, and to this end arrangements are made for a relative living in the house to receive from the hospital the same instruction as it gives to the patient.

The extent of involvement of the relative should normally be very limited, and I must confess that I find it difficult to understand how, in the case of my hon. Friend's constituent, her parents can claim to be involved in her dialysis to the extent that my hon. Friend suggests.

This leads me to the suggestion of extending the scope of the attendance allowance. This allowance is now payable to those severely disabled people who need a great deal of help from another person, both by day and at night. Many of those now in receipt of this allowance are bedridden or house-bound, or otherwise unable to lead an independent life in any way. We do, however, plan to extend the allowtnce to bring in broadly those people whose need for help from another person arises by day or at night.

But the medical requirements for the allowance are not, and under the extension will not be, related to a particular disability or type of treatment. While it would be unfair to hold out any firm hope for my hon. Friend's constituent—

The Question having been proposed after Ten o'clock on Tuesday evening, and the debate having continued for half an hour, Mr. DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at twenty-six minutes past One o'clock.