§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Greg Knight.]
11.55 pm§ Mr. Kenneth Hind (Lancashire, West)I welcome this opportunity to initiate the Adjournment debate in my name, and to raise the problems faced by sufferers from narcolepsy who want to obtain an attendance allowance.
There are 20,000 narcolepsy sufferers in the United Kingdom, many of whom experience great difficulty in securing an attendance allowance, mainly because of the failure of the medical profession in certain quarters to identify their problem. Narcolepsy is a lifelong disorder that may entail serious disablement. No cure is known, and the cause is suspected to be a central nervous system defect—though the exact mechanism is not clearly understood. There is no evidence of a psychological cause.
The symptoms usually appear independently of one another. They are typically rather mild to start with, but gradually increase in severity over a period of years. The development and severity of the symptoms are very variable in different individuals. The condition often leads in later life to an inability to work and to early retirement.
The two primary symptoms of narcolepsy are excessive daytime sleeping and cataplexy. In severe cases, either can result in severe disability. The other symptoms appear less frequently, and usually present no really major problems —though one of them, hallucinations, is common in many cases.
Excessive daytime sleepiness is usually the first symptom to be noticed. It obviously affects the individual's ability to work, and where he or she is employed in work that demands deep concentration their performance is greatly affected. That can lead to employment problems. Pathological sleepiness is evident every day, though its intensity varies. The sufferer nay find only the more severe episodes troublesome. Over 24 hours, the total time spent sleeping is usually no more than normal. The abnormality lies in the individual's continuous susceptability to sleepiness or to falling asleep, and the circumstances in which that occurs.
Cataplexy, the other primary symptom, is a brief but sudden loss of voluntary muscle control, usually triggered by emotions such as those associated with laughter, anger, elation, or surprise. The severity and extent of a cataplectic attack can vary from a fleeting sensation of weakness extending more or less throughout the body to the noticeable involvement of several muscle groups or to a state of absolute powerlessness involving almost all the voluntary muscles. During an attack, vision may become blurred, and speech difficult or impossible. Sagging of the jaw and tilting of the head are common, and are frequently accompanied by a slight buckling of the knees.
Sometimes an attack will be marked by convulsive jerking, caused by the muscles alternating rapidly between limpness and partial control. It is not unusual for a sufferer —for example, a woman out shopping—to collapse in a heap on the floor. The length of these attacks varies from a few seconds to half an hour.
Upon first appearance, cataplectic attacks are mild and infrequent. They increase in severity and frequency up to a level which varies from person to person. Some people 927 suffer only one or two attacks a year, whereas others have hundreds a day and a typical attack may last for up to 30 minutes.
It is the people who suffer very seriously from this unfortunate disability about whom I am most concerned. Many of them cannot be left on their own. They often need attention day and night. When making applications for attendance allowance, they have come up against problems put forward by the medical profession.
The Narcolepsy Association (United Kingdom), UKAN, feels that the common factor in the problems facing many sufferers who try to obtain attendance allowance is the ignorance of many general practitioners. In most cases the GP's first reaction to the applicant's statement is "Narcolepsy—what on earth is that?". As the practitioners consulted by the Department of Social Security are often not familiar with the syndrome, they do not realise that a patient, who appears to have impaired physical and mental functions, suffers from the disorder and can be severely handicapped.
I refer the House to the views of David Parkes, professor of clinical neurology at King's College hospital. In an article in The Guardian on 21 September 1990, he said:
The condition is really disabling, maybe even more so than epilepsy. It is a lifelong chronic problem. Patients are sleeping their life away. Attacks of cataplexy—sudden muscular weakness triggered by excitement such as anger or laughter—which also occur can result in broken bones and self injury.I am aware of a number of cases in which there have been personal injuries to the sufferer.Employers, faced with an applicant who is not only in his late forties, but who also falls asleep, suffers from cataplectic fits in the office and displays automatic behaviour, are naturally extremely reluctant to engage him. In practical terms, the narcoleptic, in full possession
of his innate mental and physical powers, is often unemployable.
On account of a lack of knowledge, many narcoleptics try unsuccessfully for years to have their disorder diagnosed. I know of many cases, details of which I can pass to my hon. Friend the Minister, which have been diagnosed by a number of doctors. It is only by good fortune, or with the help of the Narcolepsy Association, that they have managed to consult a doctor who understands the problem.
GPs often made comments such as, "This is what I call Billy Bunter syndrome"; "All you have to do is to pull yourself together"; or even, "There is only one thing I can
prescribe for that"—usually psychotropic medication—"and I do not believe in it." Often the lack of knowledge extends to consultant neurologists of which there are no more than half a dozen in the United Kingdom whose names can be given to a patient's GP with any confidence.
The worst outcome is referral to a psychiatrist, who will assume that the patient's disorder is mental and not neurological and give quite unsuitable treatment. It is not uncommon for narcoleptics to be prescribed tranquillisers and sleeping pills. Such medication, and the more extreme forms of therapy such as electric shock treatment, make the condition worse. Unfortunately, I am aware of examples in which a drug called Ritalin, which helps narcoleptics, has been prescribed and, because the patient's level of activity has been raised so high, they have 928 then been prescribed Mogadon in the evening, which has the opposite effect. That leaves them on a sort of rollercoaster that does not help the condition.
The major problem facing a narcolepsy sufferer in securing a diagnosis is general practitioners' lack of knowledge. The case that came to my attention was that of Mrs. Lloyd. She is a constituent of mine and her case is typical of the problems faced by narcolepsy sufferers. She first applied for attendance allowance in 1987 and I first wrote to my right hon. Friend the Minister in December 1987 requesting that he assist me in speeding up the process. Since then it has been subject to one appeal after another. It has now arrived on the doorstep of the social security Commissioner who has recently made a decision.
Mrs. Lloyd is a severe sufferer. Her husband, John, has been to see me on a number of occasions. He is a dedicated man who has suffered a heart attack and who, in his old age, is looking after his 65-year-old wife. He is alert to every nuance of his wife's breathing. A slight jerk of her body has him tearing out of bed to be at her side. He lies at night, dozing, just watching her in case she suffers an attack. She suffers from sleep attacks in which she stops breathing and he has to be on hand to ensure that she is revived. He lives with that from day to day. Naturally, the anxiety that it is causing him is terrific.
According to the Attendance Allowance Board, that lady, who is suffering from such a debilitating problem, does not qualify for day or night attendance allowance. As a consequence, the family manages as best it can without something that many of us would regard as essential.
Recently, Mr. Rice, the social security Commissioner, said that two questions should be asked in relation to each sufferer from narcolepsy and attendance allowances generally. First, one should ask whether there is any danger to the applicant; and, secondly, whether that danger could be averted by supervision. In Mrs. Lloyd's case, Mr. Rice has directed that the case should go back Ito the Attendance Allowance Board to be reconsidered, but this is nearly three and a half years after the original application. As far as I can see in Mrs. Lloyd's case, the answer to both Mr. Rice's questions is, yes.
I could go on at length about a number of cases and I appreciate that my hon. Friend the Minister will be aware of many of them. They have come to my attention from all over the country. All I can say to my hon. Friend is that there are many people suffering from narcolepsy who need day and night attendance from relatives to help to keep them alive. The main problem against which we are fighting is ignorance in the medical profession and, often, doctors' unwillingness to diagnose what is an important problem.
I trust that by bringing this problem to the Houses attention I will widen awareness of it and, I hope, help sufferers such as Mrs. Lloyd and many others.
§ 11.9 pm
§ The Parliamentary Under-Secretary of State for Social Security (Miss Ann Widdecombe)I must congratulate my hon. Friend the Member for Lancashire, West (Mr. Hind) on having this subject accepted for an Adjournment debate. I understand that this is the first time that he has been in this situation, and it is certainly a first time here for me tonight.
The Government are fully committed to giving as much support as they can to helping severely disabled people.
929 However, merely to have a disease of whatever sort is not in itself a passport to benefits or to attendance allowance. As my hon. Friend so rightly said, what is relevant is the satisfactory answer to the question whether the effects of the disease are such as to justify supervision.
The benefit that my hon. Friend raised tonight, and which therefore most concerns us, is attendance allowance. It may help if I remind the House of the background to the allowance. It was introduced in 1971 as a single, flat-rate benefit for people who need a lot of attention or supervision both by day and by night. A separate, lower rate was introduced two years later for those who satisfy the conditions only either by day or by night.
Decisions on whether the medical criteria are satisfied are made by the Attendance Allowance Board or, more commonly, by delegated medical practitioners—generally referred to as DMPs—acting on its behalf. In reaching their decision, DMPs have regard to a full report of the claimant's condition and attendance needs which has been completed by another doctor who has visited the claimant for that purpose. The claimant is invited to have a carer present at this visit and any relevant points made by the claimant or by the carer are included in the report.
In some cases, the DMP finds it necessary to obtain further medical evidence from a specialist who has dealt with the case or from the claimant's own general practitioner. The claimant can also submit any other evidence that he or she thinks may be relevant. The DMPs follow published comprehensive guidance issued by the Attendance Allowance Board. The board consists of experts in different areas of medicine and others who have a professional interest in people with disabilities.
Attendance allowance is a benefit aimed at helping people to meet the extra costs generally associated with severe disabilities. Its purpose is to provide a broad level of support, as of right, to many disabled people—almost 800,000 at present. It is not related to any particular costs or disablement, but focuses on the care needs arising from the claimant's condition.
This is an essential principle on which the structure of the benefit is based. It is also the element which enables attendance allowance to be applied quickly to new conditions and illnesses, whatever their nature, as they are identified. To attempt to regulate for every type of disablement or medical condition which might give rise to entitlement to attendance allowance would be bound to lead to a very complex scheme. It would also be bound to lead to delays such as the delay that my hon. Friend has rightly deplored. For that reason, I am convinced that it would not be appropriate simply to make narcolepsy in itself a sufficient condition for attendance allowance.
I can understand the sentiments which clearly underlie my hon. Friend's concern to ensure that specific illnesses should passport people into attendance allowance. However, under the present rules, people suffering from any condition have to establish their entitlement to attendance allowance if they have sufficient care needs as a result of that condition. The effects of different conditions vary enormously and it does not always follow that a particular one will generate the same level of care needs.
Narcolepsy is a generic term which covers, as my hon. Friend rightly said, narcolepsy, catalepsy and sleep 930 paralysis. While they can be very alarming to the person concerned and to others with them, those conditions in themselves do not put the life of the person concerned in danger. That must be taken into account in determining the need for supervision.
People suffering from narcolepsy may fall asleep in monotonous conditions, in conditions of extreme warmth, when they are watching television, when they are naturally tired, when they have had a heavy meal or in any one of the conditions in which people would normally feel the desire to sleep. However, most people do not suddenly suffer from an overwhelming compulsion to sleep when engaged in a positive activity such as walking downstairs or filling a teapot with hot water. The necessity of establishing that a narcoleptic is a danger to himself or herself is therefore an essential ingredient in trying to obtain attendance allowance. It is not sufficient simply to suffer from a low resistance to sleep, which is the essence of the condition of narcolepsy.
I understand that it is very rare for persons with narcolepsy to sustain serious injury as a result of an attack or to harm others. People who are prone to abrupt sleep attacks should obviously consider whether it is wise to drive or to pursue monotonous occupations which put them at risk. However, they would be unlikely to qualify for attendance allowance which requires round-the-clock supervision on those grounds alone. They would need to show that the particular manifestations of their form of narcolepsy created danger.
My hon. Friend was right to state that narcolepsy is not a well-publicised condition. He was right also to state that it is estimated that about 20,000 people in the population suffer from it. Symptoms usually begin in adolescence and there is no question of children getting into difficulties because they are unaware of their low resistance to sleep. For most sufferers the symptoms are not extreme, and to exempt all those suffering from narcolepsy from the need to satisfy the attendance allowance criteria would be costly and also inequitable for people with other conditions, because many narcoleptics are unlikely to have supervision or care needs sufficient to justify payment of the allowance.
Where to draw the line on eligibility is always one of our most difficult issues in social security. I am convinced that our present approach is right, especially as in representations that we have received disabled people have consistently said that we should concentrate on the effects that a disability has on a claimant's life rather than on the medical aspects of the disability.
My hon. Friend mentioned a particular constituent of his who has narcolepsy. One cannot help but sympathise with that constituent and with the anxiety that her husband and family have suffered. That constituent has been refused attendance allowance at either rate on the ground that the medical criteria are not met. As I have explained, decisions on attendance allowance are for the Attendance Allowance Board and its delegates. Neither I nor my right hon. Friend the Secretary of State can intervene. However, the lady concerned has exercised her right of appeal to the social security Commissioner on a point of law rather then a medical point, and my hon. Friend was right to state that the Commissioner has recently remitted the case back to the board to examine it afresh. That is the correct way in which the constituent's dissatisfaction should be considered.
I suspect that what I have said will not necessarily have satisfied my hon. Friend. Nevertheless, I am sure that he 931 will be able to appreciate the reasons for not giving automatic entitlement to attendance allowance to people with specific medical conditions. Even very serious medical conditions do not lead to automatic qualification for attendance allowance. Each individual case must show that the effects are such that supervision is necessary, either all the time or for part of the time.
The Government have made continued improvements in social security benefits for disabled people over the past 11 years. I welcome the presence in the Chamber of the hon. Member for Birkenhead (Mr. Field). In his former incarnation as Chairman of the Select Committee on Health and Social Security he paid tribute on many occasions, albeit en passant in various reports, to the measures taken by the Government over the past 11 years to try to make life better for the disabled.
In 1979, 265,000 people received attendance allowance. Today, as I said earlier, nearly 800,000 receive it. It is estimated that by 1993–94 more than 1.1 million people will receive either the care component of the disability living allowance or attendance allowance. Overall, we have more than doubled expenditure on benefits for disabled people during the past 11 years. That is a record of our commitment and one about which we are, and have reason to be, justifiably proud.
Inevitably, when new diseases are identified, it takes time for the medical profession fully to recognise the 932 effects. I do not doubt that some of the rather harsh words that my hon. Friend has spoken about medical practitioners are probably justified. It takes time for information to be disseminated. However, even if all those medical practitioners were to diagnose correctly all those coming to them for recommendations for allowances or for help with the condition and for prescriptions, having narcolepsy would not necessarily justify allowances and benefits for those patients. The slowness of some members of the medical profession to catch up with this is not having an effect on the rights of patients claiming attendance allowance. Even if severe narcolepsy were diagnosed, it would still be necessary for the sufferer to show that supervision would materially alleviate or prevent danger occurring as a result of those severe symptoms.
If we are to use wisely the money that we are rightly spending on the disabled, we have to consider each case on its merits. Sympathetic as I am towards those who suffer from narcolepsy, which I recognise is a somewhat under-recognised condition, the system should be left alone. There is no such thing as an automatic passport to these allowances and that is how things should continue, as disabled people themselves agree.
§ Question put and agreed to.
§ Adjourned accordingly at twenty-one minutes past Eleven o'clock.