Social Services

The days and nights of Peter Willows

Diana Dewar

Peter Willows, a qualified Bristol barrister aged fifty, who is severely disabled and unable to practise, has lost a two years' legal hassle with the Government to win a full 'attendance allowance' although his doctor declares he must have "constant supervision day and night."

The correspondence with the powers-that-be — the Department of Health and Social Security, the Attendance Allowance Board and the National Insurance Commissioner — weighs about half a stone and, he estimates, represents about £1,000 in administrative and professional costs, Mr Willows sums up his defeat: "I feel strongly that the heavy expense involved in fighting disabled people overa couple of pounds or so a week could be much better spent in granting their needs on the certificate of a doctor who knows them. It is not only unfair to force the disabled to fight but also frustrating for their doctors."

He has the advantage of knowing the law. He was educated at Clifton College and the University of Bristol, where he achieved the degrees of BA and LIB. But how can even a lawyer fight when he is not allowed to appear to present argument or evidence? The Attendance Board meets in camera, no one is legally represented, and the Board is not required to give grounds for refusing benefits however necessary these may seem unless there is an appeal.

How handicapped is Peter Willows? He could imprecisely be described as a spastic (he wrote a book, Human Tortoises, about the experiences of a spastic) but suffers in fact from a rarer form of nervous disease known as torsion dystonia. He needs help with dressing, washing, shaving, and going to the lavatory. His food has to be cut up. He can walk short distances unaided but is very unsteady on his feet, and, he cannot go to bed unaided. He finds it difficult to sleep so has to take heavy sedatives, and apart from help to visit the lavatory at night, needs to move to relieve pain spasms in his legs.

Officially, to qualify for night attendance he must be so severely disabled physically, or mentally, that at night he requires prolonged or repeated attention in connection with his bodily functions; or continued supervision to avoid danger to himself or others. He would,

therefore, appear to have the tragic qualification, but his 'case' seems to revolve around a semantic riddle posed by officialdom. This asks: "When does day become night and night become day?. . "The Board asserts in cumbersome prose: "The statutory provisions do not define 'day' and night' and thus do not lay down When 'day' ends and `night' begins." They take the view that the question "is not one which is properly susceptible to a universal answer" but should be determined having regard to the circumstances of each case.

In Mr Willows's 'case' they decided that the attention he requires upon being 'put to bed' at 10.30 is given during the day. (It might be reasonable to argue that night begins when one goes to bed; after all in hospital night begins around 9.30 when the night staff come on duty,) But they allowed that the subsequent attention he invariably needs until 1.15 am (this is his worst time) is given at night. They accepted that this night attention occurs on most nights and is in connection with his bodily functions, but go on: "However, having regard to the extent of the attention we conclude that it is neither prolonged nor repeated within the broad meaning of section 2 (1) (b) (i) of the National Insurance Act 1972."

Mr Willows has a remarkable friend in Miss Amelia C. Brown who has looked after him for forty years, originally joining the family as governess, but the Board perversely insists on differentiating between a need for someone to be on hand all the time and a need for "continual supervision."

However, the fact that someone is able to summon help does not obviate the need for help being available. A night nurse costs the same whether you need her six times in the night or not at all. When the staunch Miss Brown was in hospital herself for eight weeks Mr Willows had to engage a night nurse. Surely all this adds up to a case to convince the Board?

Mr Willows thought so when, in July 1972, he first claimed and was refused both day and night allowances by return of post. Three months later he asked the Board to review their decisions, another doctor was consulted and he was awarded the day allowance to operate from June 1973.

But Mr Willows was dissatisfied, and in January 1973 his application for leave to appeal to the Commissioner was granted.

Now here is a digest of the milestones along the long legal road to the present stalemate about when day is night and night is day.

August 1973: He wins his appeal on a point of law (the Department had not disclosed to the medical delegate some of the relevant documents and he did not give reasons for his decision) and it all goes back to first base.

October 29, 1973: He is advised of the opinion which the Board had 'provisionally formed regarding his case' (that he was not entitled to the night allowance) and was invited to comment or produce further evidence before they reached a conclusion.

October 31, 1973: He replies, again submitting that the 'time' he requires attention is 'night' and maintaining that as he needs such attention every night between 10.30 and 1.15 am it must be repeated and prolonged. He also suggests that if the Board wants further medical evidence they get it from a specialist in neurology as his disorder is rare.

November 1973: Miss Amelia C. Brown writes to the Board saying she has looked after Peter Willows since he was ten. "He has always been ill but his health has varied. Some years ago I had to push him around in a wheelchair. Now, at night, I have to undress and put him to bed and I myself rarely go to bed before 1.00 as he frequently cannot sleep. After then, he is usually all right but not always.'' January 1974: He is again medically examined by another GP.

March 1974: He is advised of the opinion provisionally formed having duly considered the additional evidence and again invited to comment. He replies by return saying that `the Board must act judicially which it has not done.'

May 1974: His claim for night attendance is again refused and the lower rate day certificate confirmed.

May 1974: He asks leave to appeal. He maintains that they have got their facts wrong and their medical opinion also errs. , August 29. 1974: Another National Insurance Commissioner refuses him leave to appeal. In a seven page decision he eventually decides that no part of 1030 pm-1.15 am is night nor that attention needed during those hours is prolonged or repeated.

The full attendance allowance Mr Willows seeks is now £8a week; and the day attendance £5.35 — a meagre enough contribution towards employing a nurse/attendant full-time or even towards paying for some relief for a relative when compared with the cost of a hospital patient. Peter Willows still crusades for a more realistic and humane interpretation of the Act not only for his own sake but for the benefit of many others, perhaps less articulate and less persistent.

Now, perhaps, new allies are about to join him. There are plans for further awards, such as mobility allowances, care allowances, invalidity pensions. Welcome news, but perhaps the first priority should be a more realistic interpretation of the rules governing his 'attendance allowances' for those dependent on others in everyday routines. The present procedure

can be cruelly protracted, degrading and frustrating for all concerned.

It must have been with a hollow laugh that Mr Willows learnt of the naive surprise of the Governmept Actuary in a report published la March 1974: "In ,the event the number of awards of these allowances has been lower than expected."

Diana Dewar's books on sociologi' cal subjects include Orphans of the Living (Hutchinson)