§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Lennox-Boyd.]11.42 pm
§ Mr. Michael Colvin (Romsey and Waterside)
It is a pleasure to introduce this Adjournment debate, and I begin by congratulating my hon. and learned Friend the Member for Mid-Bedfordshire (Mr. Lyell) on his appointment as Under-Secretary of State for Health and Social Security. I gather that this is the first adjournment debate to which he will reply, and I hope that it is the first of many. May they all be at this somewhat reasonable hour.
I welcome the opportunity to raise on the Adjournment the case of Roland Read of the town of Totton in my constituency. Roland Read is 18 years old and suffers from Allport's syndrome, which affects kidney function and necessitates him receiving kidney dialysis twice a week. Last year, Roland received a kidney transplant which, sadly, was unsuccessful, and his dialysis treatment continues.
Roland is being treated as an out-patient at a pioneering unit at St. Mary's hospital, Portsmouth, under Professor H. A. Lee. Roland is a self-care patient—he uses the dialysis machine at the Meon 5 ward at St. Mary's out of hospital hours, without the assistance of trained nursing personnel. The only help Roland receives is from his mother, who accompanies him, prepares him for the dialysis and cleans the machine ready for the next patient. Medical assistance is not available from members of staff on-site but must be summoned if necessary by telephone, as if the patient were dialysing in his own home. I am pleased that my hon. Friend the Member for Portsmouth, North (Mr. Griffiths) is in the Chamber at this well-attended Adjournment debate because I know that he has a constituent who is also a self-care patient at St. Mary's hospital. I think that he will have something to add to this debate when I have concluded my remarks.
It is because Roland's treatment takes place in the precincts of a hospital that I specially raise his case, as the setting-up of the unit at St Mary's post-dates the Social Security Act 1979 under which Mrs. Read, Roland's mother, attempted without success to claim an attendance allowance for his care. The regulations governing the payment of attendance allowance stem from section 35(1) of the Social Security Act 1975. That Act was widened in 1979 by Statutory Instrument 1979/375 to include persons suffering from renal failure, treated regularly for dialysis for two or more sessions a week, provided they satisfied the prescribed conditions. Patients carrying out home dialysis can qualify for an attendance allowance, although not all do. Regulation 5c specifically excludes any patient dialysing as an NHS out-patient. But what is an outpatient?
At that time, no patient receiving dialysis in hospital would have done so without the direct supervision of a member of staff. The so-called self-care treatment pioneered by the Wessex regional authority, which covers both my constituency and that of my hon. Friend the Member for Portsmouth, North, and organised by the unit at St. Mary's is something entirely new. Patients such as my constituent are in an anomalous situation because of the novel methods of treatment they are receiving.
140 St. Mary's hospital has an active transplant programme and self-care is seen as a new option for kidney patients. Eight patients are using self-care facilities at the hospital, but within the Wessex regional health authority, there are already units at Basingstoke and at St. Leonard's in Ringwood.
The unit at Ringwood was set up at a capital cost of £42,500 and has the facilities to dialyse 12 patients a week. That capital cost compares favourably with the cost of installing home dialysis equipment, which is confined to the use of one patient only, while the hospital units are available for multiple use. I understand that the cost of installing dialysis equipment at a patient's home, using a portakabin specially adapted for the purpose, is around £1,000 merely to lift the portakabin into place, notwithstanding the cost of the equipment itself. Of course, it would cost another £1,000 to lift the portakabin out of the home if the patient received a successful transplant and no longer needed dialysis. That is not to decry this country's excellent record in providing home dialysis facilities, whereby over half the patients receiving dialysis treatment do so within their own home.
The self-care treatment available within Hampshire could well help relieve the pressure on dialysis facilities and allow an increasing number of patients to be treated. We have yet to get the final figures for 1985, but it appears that the number of new kidney patients treated last year rose from 35 to about 40 per million. That is an excellent record, but there is still room for improvement. In fact only last week my hon. Friend the Member for Stockport (Mr. Favell), who I am also glad to see in the Chamber, was given leave to bring in a Billto establish procedures for eliminating the waiting lists of patients who require kidney dialysis by contracting out the provision of such facilities.He pointed out that experts have estimated that in England and Wales alone about 1,200 kidney patients are not being served by the dialysis or transplant programmes. I am sure that if the kind of treatment being offered at St. Mary's hospital, Portsmouth, and the other units is taken up elsewhere in the country not only could those kidney patients be served but, alas, there may also be an increasing number of patients such as Roland Read who are debarred from receiving an attendance allowance, despite the fact that they are carrying out exactly the kind of self-care they would perform in their own homes.
Only a small number of such patients are affected at present. A switch to that type of care could effectively penalise the carers. While patients are trained to be self-reliant and to operate the machine single-handedly, in practice most patients need the assistance of a helper. In Roland's case his mother drives him on the 60-mile round trip to the hospital and spends one and half hours preparing the machine. Roland then spends six hours on the machine with a further three quarters of an hour spent in cleaning the machine. That happens twice a week and on many occasions the couple do not get home until the small hours of the morning. It would be a great burden for a young person to undertake such treatment entirely alone.
The attendance allowance that is available to home dialysis patients would assist with the expenses incurred by self-care patients such as Roland, whose co-operation enables expensive National Health Service equipment to be used more frequently without additional staffing costs.
On 4 September 1986 our local paper, the Southern Evening Echo, said: 141They say the Lord and the system always helps those who help themselves and the more you give in life the more you get back.But for an 18-year-old kidney victim and his mum, self-help was met with a well-aimed financial kick in the teeth from the State.The article by Mr. Dermot Martin is tough-speaking but is probably true. It ends with a quotation from Professor Harry Lee, who is in charge of Roland's treatment. He did not mince words when he said:Those thickheads at the Ministry haven't realised yet that Mrs. Read is simply doing at the hospital what others are doing at home and getting financial help for. Our scheme here has full Government approval.I know that my hon. Friend the Minister had these cases under review but I hope to seek his reassurance that the regulations may be amended so that self-care dialysis patients may qualify for an attendance allowance in the same way as do those who carry out home dialysis.
Following the article I have quoted, a letter was published in the Southern Evening Echo. It was entitled:Thanks a lot for such kindness".The letter said:Roland and I wish to thank the two people who have anonymously sent us cash donations after reading in the Echo of our struggle to get an attendance allowance owing to Roland myself for doing self-care dialysis.It is nice to know that somewhere some people care and their donations are gratefully received.It is now up to the Minister to demonstrate that he too cares.
§ Mr. Peter Griffiths (Portsmouth, North)
With the permission of the Chair and the agreement of my hon. Friend the Member for Romsey and Waterside (Mr. Colvin), I should like to add a short rider to what my hon. Friend has said. In giving my full support to his comments I should like to relate what happened recently. A Portsmouth patient approached me to point out that self-dialysis patients do not have immediate access to trained help or assistance should they find the need. He told me that it takes well over 10 minutes for anyone to respond to a call from the dialysis unit to the hospital. At first I thought that that was the kind of exaggeration that people bring into such descriptions. However, when I raised the matter with the hospital authorities I was surprised to find that they agreed that there could be a delay of more than 10 minutes between the time a call was made and trained assistance being available.
The hospital authorities continued to claim two mitigating circumstances. First, they suggested that dialysis patients often help each other. If another patient was available, he would help the patient in difficulty. Secondly, the authorities stated—I am sure that this is true—that self-dialysis patients are very carefully trained before they are allowed to become self-dialysing. However, my point and the point which was stressed by my hon. Friend the Member for Romsey and Waterside, is that the regulation which suggests that a patient who is an outpatient at an hospital is not eligible for an attendance allowance was made when the assumption was that the patient going to the hospital had ready, early and immediate access to skilled help. If it is accepted by the hospital authorities in Portsmouth that there can be a gap of more than 10 minutes before help is available, the situation in the hospital dialysing unit is analagous to that in the patient's home. The rules regarding the attendance allowance ought to be the same.
§ Mr. Tony Favell (Stockport)
With the consent of my hon. Friend the Member for Romsey and Waterside (Mr. Colvin) I would like to make a brief contribution I would like to support my hon. Friend's plea for help by way of attendance allowance for self-dialysing patients.I support the payment of the allowance, for two reasons. It releases expensive capital equipment to help others and it gives people the opportunity to lead a normal life. When one has to use a kidney machine twice or three times a week during the day, it is very difficult to hold down a job. That throws people on the state. If patients are able to use kidney machines at night — I commend the initiative in that respect—it will allow kidney patients to lead a normal life. For that reason I support my hon. Friend's plea this evening.
§ The Parliamentary Under-Secretary of State for Health and Social Security (Mr. Nicholas Lyell)
I congratulate my hon. Friend the Member for Romsey and Waterside (Mr. Colvin) on winning the ballot for the debate tonight. The amount of interest which it has caused and the reasonable hour at which it is being held are also grounds for congratulation.
It is a great pleasure to see my hon. Friend the Member for Newbury (Mr. McNair-Wilson) in his place, as he brings his great and personal knowledge to this subject which is important to so many people. I shall be glad to respond to my hon. Friend the Member for Romsey and Waterside and to my hon. Friends the Members for Portsmouth, North (Mr. Griffiths), and for Stockport (Mr. Favell).
I am grateful to my hon. Friend the Member for Romsey and Waterside for the clear way in which he set out the problems, which, as he recognises, arise from the happy development of scientific methods of treatment—developments which were not foreseen some years ago when the regulations were first devised, or in 1979 when they were altered to ease the position.
In the time available I shall set out the background, the new circumstances as described by my hon. Friends, the way in which we have approached the problem and how we seek to tackle it.
With regard to the background, renal failure, and the consequent need for dialysis, rightly command considerable sympathy from all of us. Dialysis techniques have, of course, improved over the years, together with surgical intervention with kidney transplants. Many thousands of people are now able to lead normal lives as a result. 'The introduction of continuous ambulatory peritoneal dialysis in particular has freed many dialysis patients from the need to use machines, and the point made by my hon. Friend the Member for Stockport about the need to dialyse at night was along those lines.
Of course, not all patients can make use of these techniques, and many still rely on haemodialysis machines and can spend up to six hours two or three times a week dialysing on one of the machines. About 4,000 people dialyse by machine. Around 2,000 of them have the machine installed at home once the hospital has trained them and a relative or friend in the machine's use. Emergency help is provided by the hospital should the equipment fail.
For the remaining 2,000, dialysis is undertaken in a hospital which the patient visits regularly for the purpose. 143 This may be because particular problems need expert supervision or because there is no scope in the home environment for installing the necessary equipment.
Expanding facilities for the treatment of end-stage renal failure is one of the Government's priorities and we have encouraged health authorities to experiment with a variety of new ways—of which this is one—of providing the service to make the best use of resources and to take account of patients' needs. There are now satellite dialysis units away from main renal units, some of them outside hospital premises, and we commend all of these imaginative initiatives and this flexible approach. My hon. Friend has told the House of another development this evening. The facilities in the main renal unit in Portsmouth and other locations he mentioned are now being used during the night on what is called a "self-care" basis although, within the hospital, we understand, there is no supervision by the hospital staff—the length of time to obtain service if the bell is rung is some indication of that — and the patient brings his own helper with him to help connect him to the equipment and later to disconnect and clean up, unaided or supervised by the hospital staff.
The House will see, therefore, that methods of dialysis are continually developing in an effort to match the needs of patients with the best possible use of resources. Portsmouth health authority has produced a novel approach within the hospital environment. It is, of course, early days, and I am sure that it will be monitoring the situation, as we hope to do, to see how it works out.
We are discussing this matter tonight because of the availability or otherwise of attendance allowance to those using dialysis equipment. Eligibility for attendance allowance depends, as one might expect, on one or more of the statutory conditions being satisfied. The conditions relate to frequent attention throughout the day or prolonged or repeated attention at night in connection with a person's boldily functions or, alternatively, to a need for continual supervision by day or night to avoid substantial danger to the person or someone else. Decisions about whether the conditions are satisfied are the responsibility of the independent attendance allowance board and of doctors delegated by them to make decisions on their behalf.
I have already indicated that dialysis techniques have improved over the years, and by 1979, the attendance allowance board found that haemodialysis in many cases no longer satisfied the criteria because the attention required was not frequent or prolonged and any supervision was not continual. I emphasise that this was not so in every case but in a substantial number of cases.
The Government were anxious to assist those using haemodialysis machines and we decided that, even though the then statutory conditions were not met, we would, exceptionally, treat them as satisfied. In consequence, regulations made in 1979, following an amendment to the Social Security Act 1975, deem those dialysing at home by machine at least twice a week during the course of which they need attention from another person to satisfy the conditions for a lower rate allowance.
The regulations made it clear, however, that those dialysing in hospital—herein lies the problem with the changed circumstances — as out-patients were not included in this deeming provision. This is in line with the underlying principle of attendance allowance that it is for 144 those being cared for at home and if care is provided wholly or partly out of public funds, it is not payable. That, then, is the background to the case my hon. Friend has put so lucidly to us this evening. His constituent, Mr. Roland Read, was found by the attendance allowance board—rightly applying the present regulations—not to satisfy any of the conditions for attendance allowance, and the 1979 deeming provisions do not apply because the dialysis is carried out in hospital as an out-patient.
Portsmouth health authority, having set up its self-care units, has altered the picture. Here we have patients using hospital equipment within the hospital, but supported and supervised entirely by a relative or friend—in this case Mr. Read's mother—and I understand that no provision is made by the hospital for supervision.
The authority and the National Federation of Kidney Patients Associations have indicated that since this puts the patients in self-care units in a position analogous to those dialysing at home, they should not be regarded as hospital out-patients and attendance allowance should be payable. It will be clear, I hope, from what I have already said that this would require an amendment of the existing regulations. I have already told my hon. Friend in correspondence that we are looking carefully at the position to see whether it would be right to change the regulations.
§ Mr. Michael McNair-Wilson (Newbury)
Is my hon. and learned Friend aware that a person on a kidney dialysis machine is quite unable to move? Therefore, although the helper may not be doing anything, he is needed in case the patient gets the cramps in his limbs, which is extremely common, or if something goes wrong with the machine. The notion that the attendant puts a patient on the machine and then leaves is unrealistic.
A second point that is exercising the minds of some kidney patients—here I must declare an interest, as I am on kidney dialysis at home and receive an attendance allowance—is what their position will be when the new Social Security Act comes into force.
§ Mr. Lyell
I am very glad to answer both of my hon. Friend's points. I welcome the fact that he has emphasised that once one is on a machine—nobody will know that better in this House than my hon. Friend — one is unable to help oneself. That is one of the reasons why an attendance allowance should be payable to those at home. The inability to help oneself is common to dialysis both at home and in a hospital.
On my hon. Friend's second point about the effect of the changes that will be introduced by the Social Security Act 1986, I am very happy to make it abundantly clear that they will not affect the way in which attendance allowance is paid. It will most certainly continue to be paid after the changes come into effect, just as it is paid now.
We have commissioned a major study of both the number and the needs of disabled people generally. That study is now being conducted by the Office of Population Censuses and Surveys. We shall be reviewing benefits for the disabled as a whole in the light of that study. We expect the results of the survey to be available in 1988, after which we shall review the whole picture in relation to the disabled. I emphasise that the changes to the 1986 Act will make no difference to the payment of the attendance allowance. I hope that that reassures my hon. Friend.
I have already said that we shall look carefully at the point that has been raised by my hon. Friend the Member 145 for Romsey and Waterside and see whether it would be right to change the regulations. Although I cannot go further than that at the moment by way of a commitment, I can outline some of the positive steps that we shall be taking and some of the relevant aspects that will need to be examined.
The first positive step that we have in mind is that in the near future we propose to send a small team from the Department to the Portsmouth area to study the whole position, in consultation, among others, with Professor Lee. We are sure that that will help us, and we hope that it will help generally. We shall need to ascertain the precise criteria for a self-care unit. We must analyse the distinction between a patient in a self-care unit and an ordinary hospital out-patient. We must ask ourselves how far the absence of supervision by the hospital alters his status.
In that context we need, to some extent, to consider the legal aspects. The federation has expressed some concern about the hospitals' liability or otherwise should an emergency arise and their responsibility for a patient while on the hospital premises. The key question is whether there is a real distinction between the present case and those cases of dialysis in hospital as full out-patients.
146 At present we are concerned with only two comparatively small units and a third, as I understand it, in preparation. They have established a particular pattern, of which we have heard tonight, but which still concerns only a comparatively few people, important cases in themselves, but showing the way and therefore a way that we must analyse.
However, we must envisage, and we do, that other authorities may develop their own solutions to the problems of matching dialysis patients' needs to the best use of resources. We need to consider our options against a slightly wider background than just this particular case.
We are fully committed to providing attendance allowance to those renal failure patients who need attention at home while dialysing at least twice a week. We shall look carefully at the path which my hon. Friend advocates, but before we commit ourselves to go down it we need to be sure that it is the best solution in everyone's interests and the best use of resources. The position is not yet completely clear cut but we shall press ahead to give the matter our clear and constructive consideration.
Question put and agreed to.
Adjourned accordingly at eleven minutes past Twelve midnight.