§ Mrs. Margaret Beckett (Derby, South)
I beg to move amendment No.1 in page 1, line 15, leave out from 'be' to the end of line 17 and insert 'immediately available'.
The amendment deals with a decision in the case of Mrs. Dorothy Moran with regard to attendance allowance that was first made by the relevant authorities and then overturned by the Court of Appeal.
Mrs. Moran's application for the night time attendance allowance was turned down on the grounds that, although there seemed to be little doubt that she needed the assistance and support of her husband, he was not necessarily awake throughout all the hours of the night. However, clear evidence was given to the board that he was quite capable of waking should his wife suffer a crisis that was totally without warning.
Mrs. Moran's application was rejected, but on advice she went to the Court of Appeal, which overturned the previous decision. Her case has now gone back to the board for further consideration. It would be helpful, now or at some later stage, if the Minister could pursue this matter. Even though the case has returned to the board, Mrs. Moran has received neither judgment nor money. Clearly, that was not what the Court of Appeal envisaged when it granted her appeal. I do not believe that the Government had that in mind when they spoke of their intention to make sure that cases in the pipeline were sympathetically considered. Therefore, I hope that the Minister will agree to pursue the matter. I wish to put on record that I have been asked to make that plea by my hon. Friend the Member for Birkenhead (Mr. Field). Unfortunately he is attending the Select Committee on Social Services and is unable to be present to raise this matter.
We hope that the Government will give some consideration to the proposal in our amendment. I hope that they will agree to consult perhaps a little more widely than they have done on some other alternatives—about their new wording. Throughout our debates on the Bill, the Government have insisted that all they are seeking to do is to restore the law to what it was before the Moran judgment was given. We have expressed the anxiety, felt by many involved in such work, that the new wording carries with it certain dangers and could be interpreted more restrictively than the wording before the Moran judgment. I recognise that the Minister has already said that he will consider some of the alternatives that have been proposed, but he has said that the Government remain of the view that their wording will mean that the law is no tighter than it was before the Moran judgment.
With the greatest possible respect to the Minister, it is clear that the Court of Appeal did not agree with the Government that the wording previously used in the Social 296 Security Act 1975 gave effect to their intentions. Therefore, I hope that there will be wider consultation, especially with the charities which represent disabled people and which deal with the operation of attendance allowance.
We are especially worried about someone having to be awake to qualify for the night time condition and the introduction of the words "at frequent intervals". We believe that those words may lead to a tighter interpretation of the law. Obviously, at present we have no case law to consider regarding the Government's new formulation, but the word "frequent" is used regarding the daytime condition for attendance allowance, and the Court of Appeal has said that, in that context, "frequent" means several times and not just once or twice.
The reason for having slightly different conditions to qualify for the payment of night time cover and night time care is that, by obvious definition, night time care is more onerous on the carer. Therefore, it has always been the case that it is slightly easier to satisfy the night time condition than the daytime condition. We are worried that, as the law is now proposed, the night time condition may become more stringent and on all fours with the operation of the day time condition.
I must remind the Minister of the problems that occur even now under the existing law. He may recall that, in the context of the denial of attendance allowance to children under the age of two, observations have been made about children suffering from thalassaemia major and the fact that those children have to wear a pump to administer the drug Desferal during the night, and the difficulties that that causes.
The Minister may also recall that in the context of that debate attention was drawn in one particular example to the way in which the parents of the child involved need to get up at regular intervals, and so have badly disrupted nights. The problems of those parents are not recognised by the award of attendance allowance. We are worried that, even now, people who many of us might think should be more seriously considered for attendance allowance are not meeting the conditions, and obviously that colours our anxiety that this problem may be exacerbated in future.
I have received representations from officials of the city of Sheffield who remain worried that a large number of people will be deprived of attendance allowance by the new wording and who have drawn attention to the problems of those with mental illness, of those suffering from Alzheimer's disease and of diabetics who have hypoglycaemic attacks. They are often unable to call for help, but may be able to put carers on the alert. It may be enough for someone to be present and able to respond to an appeal for assistance, although that person may be sleeping lightly, but alertly.
We believe that the wording that the Government are putting into law is more stringent than at present and carries a danger that people who are now able to satisfy the tests for attendance allowance might not meet the new conditions. I hope the Minister will recognise that this is a serious attempt to offer alternative wording which the courts can interpret. We recognise that the commissioners suggested that they might have difficulties in extracting a principle from the decision in the Moran case. We hope that the alternative wording that we are offering will enable them to extract the principle and prevent the denial of attendance allowance to those who at present would be awarded it.
§ The Parliamentary Under-Secretary of State for Health and Social Security (Mr. Michael Portillo)
I shall begin where the hon. Member for Derby, South (Mrs. Beckett) began and, indeed, where the whole matter began, with Mrs. Moran, and with the point which the hon. Lady raised on behalf of the hon. Member for Birkenhead (Mr. Field) who, obviously, has shown the closest attention to that case and the issues that it has raised.
It is true that Mrs. Moran has not yet received her judgment. The attendance allowance board is an independent adjudicating authority and I cannot comment on its deliberations. However, I shall explain to the House what the present position is. Following the Court of Appeal judgment, the full attendance allowance board reconsidered Mrs. Moran's case in the light of the judgment in May 1987. Details of its provisional conclusions were sent to Mrs. Moran on 19 May together with copies of all the evidence considered by the board.
In keeping with the board's usual practice, Mrs. Moran was then asked to submit comments on the provisional conclusions and any further evidence that she might have to support her case. She responded on 25 September through Mr. Nicholas Warren of the Birkenhead resource unit, who sent the board the submission on her behalf, together with the report of the consultant neurologist, Dr. Chadwick, and statements from Mr. Moran and Mr. Pugh of the British Epilepsy Association. The full board reconsidered its provisional conclusions in the light of the papers from Mr. Warren and a reasoned statement of its final decision should be sent shortly to Mrs. Moran and her representatives. By that, I understand that she will be hearing from the board within a few days.
I have listened with great care to the hon. Lady's arguments and am grateful for the constructive spirit in which she has spoken, as she did so often in Committee. Much of what has been said today echoes the points made in Committee. I remind the House of what we think the aim of the allowance is and always has been. It is to recognise the extra cost and disruption to normal family life that arises from the attendance needs of severely disabled people.
At night, when the normal state of the members of the household is that of sleep and quiet, disruption can be caused because the disabled person requires frequent attention with his bodily functions or because his condition requires that someone should continually supervise him—that is, be awake and watching over him for a prolonged period or at frequent intervals so that he does not put himself or other people at risk of substantial danger. That is the basis on which attendance allowance operated before the Court of Appeal's decision in March last year.
I do not think anyone would dispute that disruption of a household at night by the attendance needs of a severely disabled person is the proper basis for entitlement to the allowance. The Court of Appeal, however, pushed the scope of the allowance wider than that. Its finding was that in some circumstances the disabled person's need for attendance did not cause disruption. Continual supervision might be exercised even by someone who was asleep, albeit ready to wake up if and when danger occurred. Such danger does not have to be common, with the proviso that it is not so remote a possibility that it should reasonably be disregarded.
298 That is why the Government were then faced with a judicial interpretation of continual supervision at night which was not consistent with our previous understanding of what was entailed. In our view, the court's interpretation was no longer a satisfactory expression of the criteria that must be satisfied. Clause 1 does no more than spell out what we believe is a reasonable and proper expression of the criteria, consistent with the position that existed before March 1987.
I want to be explicit with the hon. Lady. It is absolutely not our intention to create conditions any different from those that existed before the Moran judgment. That is what we are striving to achieve. I give the hon. Lady my absolute assurance on that. We believe that the clause merely returns the law to its position before the Court of Appeal decision. I have listened carefully to the fears that the hon. Lady expressed, and I am pleased that she has thought it right to give examples of what her concerns revolve around. She fears that clause 1 represents some tightening of the criteria as they operated before the Moran judgment.
We and the attendance allowance board are clear about the sort of people we want to be covered by the new formula. They are the same people as those whose disabilities and accompanying need for supervision at night would have caused the board to award an allowance before the Moran judgment. That was precisely the specification we put to our lawyers when we asked them to draft the clause. They have assured us that such people are fully covered by the new provision. Anyone who would have been eligible for the allowance before the judgment will be just as eligible after Royal Assent to the Bill.
The hon. Lady is right: ultimately the interpretation of the law is a matter for the courts. In the absence of judicial interpretation, both Oppositions and Governments depend on legal advice about the effects of legislation. Therefore, I reinforce my assurance to the hon. Lady and say that we shall certainly want to consult our lawyers again to draw their attention to the points the hon. Lady has made, and to her examples. I shall not now attempt to debate with her the meaning of the word "frequent", or any other word. I shall take the matter back to our lawyers, and assure her that I shall look into the matter and ensure that her points are considered. As I said, our understanding is that the clause does nothing more than take us back to pre-Moran.
In Committee, the hon. Lady mentioned her concern about the expressions "at night," "during the night," and "throughout the night". I understand that the words that we have used—"at night"—make no difference to the level or pattern of attendance required at night. The same sort of people will continue to qualify under the night condition, as drafted; similarly, the same sort of people will qualify under the night watching over condition as they did under the night supervision condition, as interpreted before the Moran judgment. That was my understanding. Again, I give that assurance.
I cannot accept the Opposition's amendment, because the words the hon. Lady is proposing would take us to a post-Moran position. I dare say that that is what she would like, but the "immediately available" that she is proposing is, in our view, unnecessary and takes us to the post-Moran position that we are trying to avoid. The amendment is unnecessary because clause I ensures that the criteria for attendance allowance at night are returned to a proper and equitable footing. I have already assured 299 the House that the application of clause 1 will have the same practical effect as was the situation before the Court of Appeal judgment. We oppose broadening the attendance allowance in the way that resulted from the Moran judgment.
The hon. Lady made the point that it is important to give clear guidance to the courts in this matter. The "immediately available" formulation suffers from the problem that it is not a clear form of guidance to disabled people, the courts or the other bodies that we will ask to enforce the legislation. The form of words that we have suggested will prove workable, subject to the assurance I have given to the hon. Lady— that I want to check it further with the lawyers and draw to their attention the points she has made.
§ Mrs. Beckett
This has been an interesting, although brief, exchange. I recall that Ministers said in Committee that the effect of the Moran judgment would be financially neutral and that the only reason why they were persevering with the clause, however worded, was to tidy up the law, because they had not been able to abstract principles from the Moran judgment. However, in a sense, we were hoping to offer them in the amendment a formulation that would enable them to extract principles that would tidy up the law without, perhaps, tightening it as we fear; and also, perhaps, to give effect to the law as the Court of Appeal had wished it to be. However, I am grateful to the Minister for his agreement to consult again and more widely. That will be helpful to those in another place when they examine this part of the Bill, and I therefore beg to ask leave to withdraw the amendment.
Amendtnent, by leave, withdrawn.
§ Mrs. Beckett
I beg to move amendment No. 2, in page 2, line 9, at end insert:—'(3) In subsection 35(2A) of the Social Security Act 1975, after "prescribed", in the first place where that word occurs, there shall be inserted the words "or who requires parenteral nutrition other than as an in-patient in a hospital or similar institution".'.I pay tribute to my hon. Friend the Member for Dundee, West (Mr. Ross). Sadly. I see he is not with us at this moment. but I hope that he will join us shortly. He drew to my attention and, through me, to the attention of the Committee, the problems of patients who suffer such illnesses as Crohn's disease and who find themselves, in order to sustain life and receive nourishment, reliant upon a form of treatment called total parenteral nutrition. That was unfamiliar to me and, I think, to most hon. Members on the Committee, but I understand from my hon. Friend that apart from the interest that he has developed from his constituency casework, it is a treatment which —fortunately or unfortunately he has undergone himself. It involves the placement of a central venous catheter which lies in a vein above the right side of the heart and exits through the skin at the front of the chest.
I am confident that my hon. Friend can address the circumstances of the treatment much better than I can, as he has had the experience, but the main point in relation to attendance allowance and the conditions under which the necessity for treatment arises is the comparison that has been drawn between total parenteral nutrition, because of which a patient relies on the support of a machine to sustain life, and renal dialysis.
It may be within the memory of a number of hon. Members that, at first, renal dialysis did not automatically 300 qualify a patient for the payment of attendance allowance. Over a period, so many cases had been turned down by the attendance allowance board, which was operating an approach to these cases that was more stringent than Parliament felt was justified, that, after a couple of years' experience, in 1976 Parliament decided to take the matter out of the hands of the attendance allowance board, so that someone who was forced to undergo renal dialysis to sustain life should automatically be awarded attendance allowance. I believe that that is the only case of such an automatic entitlement.
We were, and are, asking the House to consider the extent to which patients who must receive home parenteral nutrition may fall within a similar category. Certainly the treatment is life-sustaining, involves many difficulties, and might be found by many people hard to handle and endure. We were anxious lest the board, albeit for what seemed to it the right reasons, adopted rather high standards of judgment for this condition too, and we therefore sought to raise the issue whether here, too, Parliament should step in and make the disease a qualifying condition for the award of an attendance allowance. We have tabled the amendment because we are worried that individuals are being denied attendance allowance even though, perhaps for psychological reasons, they have great difficulties with the operation of total parenteral nutrition.
§ Mr. Ernie Ross (Dundee, West)
On behalf of all those who, like me, have had the benefit of total parenteral nutrition, I should like to thank all hon. Members who participated in the Committee proceedings. I speak on behalf of those who have the misfortune to have to use this treatment for the rest of their lives in order to sustain life and for those who, like me, were on the treatment for a short time.
When my hon. Friend the Member for Derby, South (Mrs. Beckett) spoke in Committee, she mentioned correspondence from Professor Lennard-Jones. During the recess he wrote me a couple of letters, and I should like to quote one paragraph from his letter of 17 December. He said:Thank you for your courtesy in sending me a transcript of the debate on the Social Security Bill during which Mrs. Beckett made such a strong case for granting an Attendance Allowance to all patients who give themselves parenteral nutrition at home. I am most impressed by the quality of the debate and the reasoned arguments put forward.Like Professor Lennard-Jones, I was also impressed when I read the debate. As my hon. Friend the Member for Derby, South said, I had my life saved by this treatment and I should like to share some of my experiences with the Minister and with hon. Members, because it may help us to come to a conclusion on the matter.
In January 1985 I required major abdominal surgery at Ninewells hospital, Dundee. That surgery saved my life. Following surgery I was making reasonable progress, but suddenly, and for no apparent reason, the operation having been a success, I started to find it difficult to feed myself. I was regularly sick and had diarrhoea, for which there seemed to be no cause. At first it was suspected that it was perhaps psychological, given the surgery that 1 had required and the stress that I had gone through. The consultant was of the opinion that perhaps I had lost the ability to eat or to want to eat, or even to want to survive.
I assure hon. Members that I was trying as hard as I could to survive, and many of my hon. Friends, including 301 my right hon. and learned Friend the Member for Monklands, East (Mr. Smith), came to see me and will recall that I was striving hard at that time but finding it difficult to maintain life. Eventually 1 was taken back into Ninewells hospital, and the staff inserted an endoscope and discovered that I was suffering from post-operative adhesions. They were not just simple post-operative adhesions, but massive ones and the consultant, Professor Cusheri said that they were among the worst postoperative adhesions that he had come across in his many years as a surgeon. Instead of the wounds inside my body healing separately, they were healing together and I was gradually choking myself to death.
There was no way in which I could feed myself by the normal method. The staff tried all sorts of treatments. They inserted internal tubes to try to feed me, but that simply added to the complications and I lost a considerable amount of weight. I was certainly not in any condition for more surgery, which was obviously what was required at that time. I did not have much to look forward to, and I can remember the day when the hospital staff tried the last method of trying to feed me. The stomach that they had created for me became solid with the infusions that I was taking in a very uncomfortable manner through a tube down my nose and throat. I thought that that was virtually the end of it.
The next morning my stomach was pumped out, and a new consultant was introduced to me. He told me that his name was Chris Pennington and that he was a consultant nutritionist. He said, "Do not worry. We will look after you." I had heard that story once or twice before, and I was not convinced. The staff carefully gathered up my emaciated frame and put it in ambulance and transported me to King's Cross hospital. I then discovered this new treatment of total parenteral nutrition, and, I should like to put on record what it involves, because it is only when one hears what is involved that one appreciates the psychological stress and the problems faced by those who, unlike me, have to live with it for the rest of their lives.
At the start of the treatment, a catheter is introduced through the skin on the anterior chest, or upper abdomen, and it tunnels through the tissues to end in a large vein near the heart. The catheter cannot be seen under one's clothing and patients can engage in normal activities during the day. At night, using strict sterile precautions, and following a protocol to avoid accidents, about 3 litres of fluid, usually in one flexible, transparent plastic container, are infused slowly through the catheter. During sleep the rate of infusion is kept constant by a sophisticated volumetric pump with an audible alarm which wakes the patient when a technical fault occurs.
In the morning the patient reduces the rate of flow of the small amount of fluid remaining to allow the body to readjust to a fall in blood glucose level. The container is then disconnected. A blocking cap is placed on the end of the catheter, anticoagulant is injected and the patient resumes activity. The patient has to learn how to maintain complete sterility during all manipulations involving the catheter or nutrient solution. New skills have to be acquired for handling syringes, infusion lines and the pump and for care of the catheter and the site at which it 302 enters the skin. Knowledge is needed about potential complications and technique, and about how to avoid or cope with them.
That all sounds fairly straightforward, but I assure hon. Members that when one has to try to deal with something on one's chest while working a machine it becomes a part of one's life. People tend to give their machines names, and my machine was called Fred. The machine has a volumetric pump, which goes tick, tick, tick. If anything happens during infusion, there is an audible alarm. If that alarm goes off, one immediately starts to panic. It is difficult to carry out these procedures on one's own, but my wife was trained while I was in King's Cross hospital and she carried out the hooking up and disconnecting. I should not have liked to do it myself. Certainly I can appreciate the stress and the psychological pressure that patients have to go through. I had to go through the process to ensure that I could undergo a further major operation, but I knew that at some stage I might be able to do away with this type of feeding and return to normal feeding.
I went back into hospital, and was there from 20 April to 11 May. When I was taken into King's Cross hospital my weight was 42.5 kg, which is under 7 stone. Within three weeks the hospital staff managed to get me to a stage at which I could again undergo fairly serious major surgery. From 24 May to 26 June I went back to total parenteral nutrition in King's Cross hospital. Then I had three weeks at home. At the end of that I was able properly to feed myself and to say goodbye to Fred, the sterile gloves and to having to connect myself up at 8 o'clock at night and remain connected to Fred until 8 o'clock the next morning.
The only thing that sustained me was that I knew that I would be using Fred for only a short time, and the consultant kept on assuring me that at some stage I could return to a normal feeding method. We discussed the possibility of my coming back to the House and of St. Mark's hospital in London taking over the regime and providing the nutrition that I required. The lowest point of my illness was when I had to face the idea of having to carry out my normal work and being hooked to a machine for 12 hours a day. That was not something to which I was looking forward. I have never suffered the stress that many of my constituents and many others suffering from diseases who have to use this treatment have suffered, because my wife was with me and she had learnt the sterile method needed to maintain my condition.
The case of Patricia Boyle, which I asked my hon. Friend the hon. Member for Derby, South to raise, is one that I can well understand. Patricia Boyle is a young, intelligent woman, but she cannot cope psychologically with the idea of hooking herself to a machine. I can personally vouch for that being a problem, as it was a difficult part of my treatment. It was only the support from my wife and King's Cross hospital that got me through it.
On the first occasion on which we took the machine home to Twead crescent and I was hooked up, as luck would have it, the giving set—the connection from the bag of fluid through the volumetric machine to the body —did not work. After half an hour of panic, trying to unblock the line and trying various other sets, fortunately we were able to contact King's Cross hospital, which provides a 24-hour service to patients like myself. Some patients who use the total parenteral nutrition method live 303 up to 500 miles from the centre that looks after their treatment, and they do not have the confidence of being able to gain access to someone who is suitably qualified and trained, as my wife and I could that night. They may not even have access to another giving set. We had a couple of spare sets and we were able to speak to King's Cross hospital. Even after the sister who was in charge that evening had gone home she was able to speak to us on the telephone and talk us through the process to make sure that I was hooked up.
It is difficult, particularly for young and elderly people, to cope with this problem. I hope that the Minister, if he cannot say today that an attendance allowance can be given, will at least give us some assurance that individual cases will be looked at more sympathetically. It appears to me, knowing Patricia Boyle and the Boyle family very well, that the conclusion Dr. Pennington came to — that psychologically she may never be able to come to terms with this form of feeding — is something that the attendance allowance board seems to have ignored completely. It would be sad if it determined that because she is not regularly breaking down, or because someone else is able to assist her, she could not be considered for an attendance allowance.
A number of studies have been carried out on responses to the treatment, and I am sure that the Minister and his Department have studied those. I draw his attention to a study carried out by Belinda-Jane Dewar, a nursing sister, into psychological problems faced by patients who have to rely on mechanical feeding. It is a very useful and informative document. She came to the conclusion that this major advance hascreated new psychological stresses for patients and their families. Since the patients' lives depend on TPN apparatus, they must accept the use of this mechanical device in order to survive. They must also adapt to the loss of normal body function and face the reality that they are permanently dependent on TPN as a substitute.On behalf of all patients who have used TPN, I thank the Committee for taking the time to consider the matter.
I conclude by referring to a comment made by Professor Lennard-Jones in correspondence to me on 24 December last year. He said:It is thus important when discussing this topic not to regard these patients as healthy people who have to perform a technical exercise each night. On the contrary, they are people with a severe illness who courageously cope with it using this technique and they achieve a very high level of activity and rehabilitation.I hope that the Minister can give some indication that those patients who have to use total parenteral nutrition from now until the end of their lives can be allowed to resume normal activities and a rehabilitated life. Certainly they would be helped if the Minister could give an indication that the attendance allowance board will look much more sympathetically at this form of treatment.
§ Mr. Portillo
I welcome the hon. Member for Dundee, West (Mr. Ross) to the debate. I understand that he was the unseen moving force behind some of the debates in Committee, and he has contributed most interestingly today. I studied the amendment very seriously before coming to the debate today.
As to precisely what is and what is not at issue, what is, not at issue is whether somebody who is on total parenteral nutrition can qualify for attendance allowance, because of course they can and many people do. The question before us is whether somebody who is on TPN 304 should qualify automatically for attendance allowance, for that very reason, without any other consideration of the case. I want the House to be clear that that is what we are considering. To answer the first point, there can he no question that people on TPN may in some circumstances be able to qualify.
On the second point, I will put my cards on the table straight away and say to the hon. Gentleman and hon. Member for Derby, South (Mrs. Beckett) that I will not recommend acceptance of the amendment because it represents an unjustified shift in the general policy that entitlement to disablement benefits is based on the effects and needs arising from disability and is not related to specific disabling conditions or forms of treatment. I should like to explain why we have reached that conclusion.
The House will know that attendance allowance is designed to help with the extra costs faced by severely disabled people who need a great deal of care in the form of frequent attention to bodily functions or continuing supervision or watching over them to avoid substantial danger to themselves or others. Entitlement to the allowance is based solely on those attendance criteria and not, apart from one specific exception, on any particular disabling condition or form of treatment.
The exception is those disabled people whose entitlement to the allowance is based on the fact that they are renal dialysis patients who self-dialyse. For many years it has been accepted that all people who dialyse at home have much the same attendance needs, and those needs are sufficient to qualify for a lower rate attendance allowance. Home dialysis patients are awarded the allowance simply because they are receiving the treatment, without any individual assessment of the needs of each patient. Recently we extended the concession to cover people who dialyse in hospital self-care units, and it was possible to treat self-dialysis in this way because the need for attendance is present in every case.
The amendment seeks a similar blanket concession for people receiving total parenteral nutrition treatment at home. We aim to enable disabled people to receive with the minimum of fuss the benefits to which they are clearly entitled. The extension of the special attendance allowance arrangements to renal dialysis patients using self-care units shows that we are prepared to respond positively and sympathetically to the changing needs of disabled people brought about by developments in medicine and new forms of treatment.
Before going down the road proposed by the amendment, we must be certain that all TPN patients have the same attendance needs and that those needs can be accepted as sufficient to satisfy the criteria for attendance allowance without individual assessment. It has been argued forcefully that the attendance needs of all TPN patients are just as great and universal as those of dialysis patients, and should be similarly recognised by automatic entitlement to allowance. We have consulted the attendance allowance board and we do not believe that we could justify extending to TPN patients the kind of blanket entitlement available to dialysis patients. The board is experienced in assessing the attendance needs of TPN patients and has received advice from experts in that Form of treatment.
305 4.30 pm
I now want to consider one of the problems that so often arise—that of conflicting medical opinion from different sources. It is true that there is a body of medical opinion that holds that all TPN patients need help and assistance with the treatment from another person. Other experts take a markedly different view. To take the extreme, in the opinion of one consultant involved with TPN, to award attendance allowance would negate the whole purpose of the treatment, which is to allow patients to lead completely independent lives to the extent of holding down full-time paid employment. Advice received from another expert is that TPN patients who are otherwise physically and mentally intact do not require attention, supervision or watching over by another person before, during or after the treatment.
I want to draw some comparisons between TPN and renal dialysis. Patients on renal dialysis must without exception keep to a strict timetable and deviation of a few hours may have catastrophic consequences. They are severely ill people with a progressive disease which causes toxic reactions. The preparation of the machine for renal dialysis takes 40 to 60 minutes. That preparation may be physically very arduous. The patient is connected by a very short tube which may be only 12 to 16 in. long. The length of the tube cannot be varied because of the law of hydrodynamics. Moreover, the connection is made via the left wrist and that effectively tethers the patient, making him practically immobile. The connection is of the friction type and it could possibly slip. The treatment causes lassitude, confusion, temperature variations and occasionally even transient heart failure through the lowering of body pressure. Such people are hardly in a state to call for help should a breakdown occur.
The timing of TPN is important, but not critical. A few hours' delay may make the patient thirsty or hungry, but will not endanger life. The preparation of the machine takes five to 10 minutes and consists of running feeding fluids through the tubing. Similarly, the length of the connection is variable from a few inches to yards depending on the pump strength. The connection is not of the bayonet type. It cannot come apart without twisting. The patient is not tethered and is able to turn over in bed and sleep comfortably. It is true that the entire apparatus weighs about 55 lb, but it need not be carried around. When the treatment is finished, TPN patients feel refreshed and often go to work. I do not know whether the hon. Member for Dundee, West would endorse that.
I am not for a moment saying that TPN patients should be excluded from attendance allowance. Undoubtedly some should receive it. I remind the House that the question is whether they should all receive it automatically. We believe that TPN patients are not a homogeneous group, all with the same attendance needs, who can be automatically accepted as satisfying the qualifying criteria.
§ Mr. Portillo
I will come to that in a moment.
The attendance needs of each individual patient are different. Some can cope with the treatment entirely unaided and do not need assistance from another person. Clearly it would be quite wrong to pay attendance allowance in such cases. Others may well need help and assistance, either because of other mental or physical disabilities or because they are psychologically unable to 306 cope with the treatment. Whether these needs arise and are sufficient to qualify for attendance allowance entirely depends on the facts and circumstances of each individual patient. I think it quite right, therefore, that a TPN patient's entitlement to attendance allowance should continue to be assessed in the light of individual needs by the attendance allowance board taking account of all the physical or mental or psychological difficulties which may be present.
In response to the point raised by the hon. Member for Monklands, West (Mr. Clarke), may I say that the attendance allowance board has made it a policy to consider all TPN cases. That matter is not put out to delegated medical practitioners. All the cases—there are not many—are brought forward. Since the beginning of 1987 there have been eight TPN cases and attendance allowance has been awarded in four of them. That is a striking ratio. It means that the board has concluded in some cases that people should be entitled to the allowance.
I cannot comment specifically on the case of Miss Boyle or any other case. However, in response to a point made by the hon. Member for Derby, South in Committee, I can state that if a letter from the attendance allowance board states that it can find no evidence of mental instability, aggressive behaviour or a suicidal tendency, it does not mean that the board is stating that unless such tendencies are present the person does not qualify for attendance allowance.
The attendance allowance board is bound in its deliberations to go through a checklist of everything that might qualify a person for attendance allowance, including, as hon. Members are aware, whether a person is likely to cause himself or herself any harm. That must be considered and covered in the documentation. That is a standard form of words, but it does not mean that a TPN patient is excluded from receiving an attendance allowance or can receive it only if there is evidence of suicidal or other tendencies.
I hope that the House will realise that we have considered this point carefully. However, I regret that I cannot commend the amendment to the House. In the spirit of the contribution made by the hon. Member for Dundee, West, I undertake to draw everything that has been said in this short debate to the attention of the attendance allowance board and I will ask my officials to continue to discuss all the issues that have been raised. I am grateful to the hon. Members for Dundee, West and for Derby, South for giving us the opportunity to consider this matter.
§ Mrs. Beckett
Although this has been a brief debate, it has been interesting. While all hon. Members will have sympathised with the experiences related by my hon. Friend the Member for Dundee, West (Mr. Ross), they will have been impressed by the clear and quiet way in which he was able to describe what must have been an horrendous experience. I listened with care to the Minister. I am particularly grateful for his remarks at the end of his observations and I want to make two or three points.
We must bear in mind a point made by my hon. Friend the Member for Dundee, West. By definition, those who undergo TPN treatment are very seriously ill, especially those who are likely to have to undergo the treatment permanently. I recall that in Committee we drew attention to observations made in medical literature to the effect that it is especially those people who have not previously 307 been seriously ill who are most likely—as was the case with my hon. Friend the Member for Dundee, West whose illness occurred unexpectedly — to face serious psychological difficulties.
Those who have already suffered a long and chronic illness and may have been in severe pain, which hopefully may have been relieved by the operations that led them to need total parenteral nutrition, may be more accustomed to suffering. They are also receiving an advantage. They are receiving a beneficial side effect to accompany their difficulties. Those people who have been struck comparatively swiftly by a serious illness and then find themselves dependent on the use of this technique to sustain life are bound to have far greater psychological difficulties. In that sense, I accept the Minister's point that obviously the circumstances will vary from case to case.
We also drew attention in Committee to medical literature that revealed the new techniques in this area. The Minister acknowledged that techniques were developing and changing. New techniques are being tested in Toronto, where a self-sealing septum is being tried. That is intended to help women patients, where there is a strong resistance to the effects of surgery, because repeated access to the catheter can be made by needle. The Minister will recall that experience there was that many patients had to reject that form of treatment because of a combination of the pain and the build-up of scar tissue and also—and very importantly—the psychological effects.
I am grateful to the Minister for confirming that, when the attendance allowance hoard said that Patricia Boyle was not displaying evidence of mental instability, aggressive behavour or suicidal tendencies, it was not suggesting that it would be necessary to wait until those conditions were displayed before attendance allowance could be awarded. We did not have such clarification in Committee.
As in the case of renal dialysis, I wonder whether the board is tending to go through what the Minister described as a checklist of tests, which have perhaps arisen from considering people with mental illness or handicap. Is the board giving sufficient weight to the new circumstances and to the technological change which has led to the introduction of this treatment, and is it applying the right tests to its judgment of psychological difficulties? That is an important point which should be considered by the hoard, and perhaps more widely. As experience develops, Parliament might well feel the need to pronounce on this matter, unless the board is able to convince us that it is using the right criteria with the right sensitivity.
I welcome the Minister's comments about the return to the board. I hope that it will consider the observations that have been made, in a spirit not of criticism, but of anxiety in the debate.
I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.