HC Deb 25 July 1986 vol 102 cc903-9 1.30 pm
Mr. Roy Galley (Halifax)

The purpose of this short debate is to focus on the growing awareness of the needs of the terminally ill and to highlight some of the problems that they face. The topic has implications for social security, health services and local authority social services. We have this desperately unfortunate group of people who, it is known, are likely to die within a short period, and the perceived need is to help them to die with dignity and to assist their families to cope with the harrowing later stages of terminal disease, the fact of death and the practical and emotional problems that surround it.

In dealing with the terminally ill, most emphasis is placed on cancer patients. It is estimated that 130,000 people die each year from various forms of cancer. Sixty per cent. die in hospital, about one third die at home, and the remainder die in hospices.

In the past, people in such circumstances were left to cope as best they could. In the close-knit communities that used to exist, the presence and practical help of extended families and neighbours frequently gave the emotional and material support that was needed. Families and communities are no longer so internally supportive, and there is a need for more organised help in our increasingly fragmented society. This is just one example of new pressure and demand for service provision within ever-growing resource allocations to the National Health Service and other aspects of social policy provision.

The initial response to the problem of terminal illness came through the remarkable growth of the hospice movement, which has mushroomed throughout the United Kingdom and which provides invaluable expert personal care. In that context, it is right to pay tribute to the unparalleled work of Dame Cicely Saunders in starting and leading the movement. She perceives the need for a liaison between the hospice movement and the community and for community nursing and other social services to become involved with the hospice movement.

I mention especially the Overgate hospice at Elland in the constituency of my hon. Friend the Member for Calder Valley (Mr. Thompson), which serves his constituency and mine. In its case, as in the case of most other hospices, there are significant contributions from NHS funds. Nevertheless, the hospice movement is still essentially funded from voluntary donations. The volunteers who work at Overgate put in long hours and carry out excellent work in raising the bulk of the funds. That pattern is reflected throughout the country. The public have given generously, but often the financial base of hospices is precarious. One must also mention the Macmillan fund, which does excellent work for the terminally ill, especially in providing extra nursing services and a range of welfare assistance.

A relatively new development has been the creation of terminal care support schemes. They are called different things in different areas, but their essential approach is the same. There are now over 80 support teams throughout the United Kingdom. They are essentially advisory and aim to deal with the control of pain and symptoms for patients suffering primarily from terminal cancer. They seek to offer emotional and practical support to the families and carers of the patients. They will endeavour to co-ordinate the various agencies involved, and include general practitioners, community nurses and social workers. They will act as a bridge between hospital and community-based services. They are not intended to supplant the necessary nursing and medical care, but should provide supplementary services.

Terminal care support teams aim to provide the optimal relief of the distressing aspects of terminal disease, whether those aspects are physical, social, psychological or spiritual. Often, support for the family will continue after a patient dies, and that can be very important to many people, particularly where, for example, a relatively young parent or spouse dies from cancer, as regrettably happens all too often, or where an elderly person is left very much alone after the death of his partner.

Terminally ill patients often have a three-to-six months prognosis and may well be ill for a short time. During the time of their illness, their condition can change dramatically and they can deteriorate rapidly. Because of this frequent short time span of their illness, they do not fit into the accepted categories of the disabled and chronically sick as we have recognised them in legislation. The attendance allowance, the mobility allowance and, for carers, invalid care allowance are specifically geared to the needs of the long-term sick and so the terminally ill with the three-to-six months prognosis often do not qualify.

Those who are elderly, who would not in any case qualify for mobility allowance, may at times be in receipt of a supplementary pension, which would qualify them for a series of single payments whether for additional needs or lump sum payments. The nature of their illness and the circumstances surrounding it require speedy and sensitive treatment, which may not always be readily possible in the application of the complex rules and regulations which, of necessity, apply.

The patient of working age may find that he is terminally ill and that he must stop working straight away. This produces the first traumatic experience for the family. The spouse, whether in employment or not, needs to take a considerable share of the burden of caring for the family.

In many cases, there is a regular pattern of movement between hospital or hospice and home. Patients will obviously not be left in hospital unless they need to be there specifically for treatment purposes. They will often wish to be at home if there is no need for the intensive care provided in hospital or a hospice. The transition from hospital to home and back again, perhaps on several occasions, can produce its own emotional problems.

Not all patients have such a short-term prognosis. Some are able to obtain attendance allowance or other benefits. However, the pattern of moving in and out of the caring institution then produces its own difficulties. While in hospital or a hospice with NHS funding, which is usually the case, they cannot obtain social security benefits, as the taxpayer is meeting the cost, at least in part, of their care. That makes financial planning difficult for families and may mean delays in benefit payments.

Sometimes, the variety of problems—medical, social security and emotional — means that families cannot cope at all and patients spend their last weeks, or even months, in hospital, at an average cost of £1,000 per patient per week to the taxpayer. Ideally, there would be a weekly allowance payable to terminally ill patients prior to the time when they may qualify for attendance allowance. The allowance should take account of the need for additional nursing care, extra heating, extra bedding, telephone rental if necessary and any appropriate practical aid and appliances. A single payment to cover such items in addition to a small weekly allowance would also solve the problem.

There are obvious and enormous obstacles to such an ideal solution, even though it might save the taxpayer money and provide the financial and emotional security that patients and their families need. Any such social security support would depend on the provision of a medical certificate stating that the patient was terminally ill. The first problem is to define a terminally ill person. It would have to be a person who is suffering from a progressive disease for whom treatment is no longer curative and who is likely to die in a short time —probably six months.

Medical science has advanced enormously and it may be able to make firm predictions, but it cannot always be so exact. People are individuals. Some fight cancer successfully and win through against the odds, some fight and lose and some give in as soon as they know that they are terminally ill. If an allowance were given, Parliament would have to approve a definition, and a doctor would have to write a certificate conforming to Parliament's specification. Whatever definition was made, there would be various interpretations of it and doctors' approach to signing certificates might vary, just as it does now with sickness certificates.

A person might rightly be defined as terminally ill but be psychologically unable to cope with the fact. Any terminal illness allowance would have to be paid to the patient, so there could be adverse medical and emotional effects on some. Relatives might not be able to cope with the fact of a loved one's impending demise, and receipt of a terminal illness allowance could add to the family's trauma. Nevertheless, terminally ill people need additional assistance.

The answer might lie in the social fund, which my hon. Friend the Minister has presented to the House while piloting through the Social Security Bill. The fund has been devised as a flexible response to a variety of urgent needs. It is well suited to assessments of individual circumstances. Social fund officers, perhaps working in liaison with terminal care support teams, could respond, having to hand expert medical, nursing and social work advice. There would not be the rigidity of an allowance, but there would still be the capacity to respond to different financial, family and medical circumstances.

There is a difficulty, in that we might already be expecting too much of the social fund. It might be seen as the solution to many problems. Thus far, however, the terminally ill have been a neglected group. That is especially true of those on a short-term prognosis. They could reasonably be considered as a priority claim on the fund's resources. The solution could be the allocation of a block of social fund money to a charitable organisation, which would administer it on behalf of the Government and supplement the charitable funds that are already available, although thinly spread.

I recognise that steady improvements have been made in regard to the disabled, the sick, carers and certain groups of disadvantaged people. My hon. Friend the Under-Secretary of State and his colleagues in the DHSS have done an extremely good job in recent years. We have seen the numbers of those receiving attendance, mobility and invalid care allowances grow substantially. The severe disablement allowance has helped an additional number of people. The payment of invalid care allowance to married women has been a great step forward. The two-tier disablement premium within the proposed income support system will be of great help to many.

Nevertheless, one seeks further improvements if resources permit. The needs of the terminally ill are clear and pressing. I hope that my hon. Friend the Under-Secretary of State will acknowledge the growing awareness of that group of people, and that if resources are available it will be possible to encourage the development of more terminal care support schemes and to use the social fund to give specifically targeted help to the terminally ill and their families.

1.45 pm
The Parliamentary Under-Secretary of State for Health and Social Security (Mr. John Major)

My hon. Friend the Member for Halifax (Mr. Galley) has raised a matter that touches us all, and has done so in a gentle and sensitive way. I am glad that he has had the opportunity to do so while my hon. Friend the Member for Calder Valley (Mr. Thompson) is in the Chamber. Alas, to the loss of the House, he is silenced by virtue of his responsibilities as a Lord Comissioner to the Treasury. Both of my hon. Friends have a long-standing and deep interest in the care of the terminally ill, and I am grateful to them both for the representations that they have frequently made to me in the past. The sick are, indeed, fortunate to have such advocates in the House.

Terminal illness is one of the great fears that we all have. For both the sufferer and those who do the caring, it is a time of great emotional stress, quite apart from the sheer physical, practical and financial problems that are often involved. I share the admiration expressed by my hon. Friend the Member for Halifax for the work of the hospice movement and for its growth from the pioneering work done in London at St. Joseph's. My hon. Friend also rightly mentioned the remarkable work of Dame Cicely Saunders at St. Christopher's. The St. Helen's hospice for children also provides an excellent example of the dedicated work carried out to provide a tranquil setting for terminally ill patients.

In the area represented by my hon. Friend the Member for Halifax, and specifically I think in that represented by my hon. Friend the Member for Calder Valley, wonderful work is done at Overgate hospital, Elland, where the district health authority provides £44,000 a year—the equivalent of four beds in an eight-bed unit. I understand that that authority also supports the Sue Ryder home at Oxenhope.

Important as the hospice movement is, it caters, as my hon. Friend the Member for Halifax will know, for only about 5 per cent. of those who are terminally ill. About one third of all terminally ill people are cared for at home by relatives, and it is right that they should attract our heartfelt thanks for the tasks that they undertake on behalf of their families and of society as a whole. Caring involves a commitment of time, resources and energy, often at the expense of the carer's own social or working life. It is a wholly admirable commitment.

For that reason, as my hon. Friend the Member for Halifax said, several NHS hospitals have established teams of doctors and nurses to provide practical help in the management of the patients by providing a 24-hour on-call service, and a support and counselling service for patients and relatives, and also the ward staff of the hospital. In addition, they co-ordinate the smooth transfer of patients from one setting to another, and help to train medical students and nurses in the care of the terminally ill. There are several terminal care support teams in Yorkshire: at Pinderfield general hospital, Wakefield; the Royal Hallamshire hospital, Glossop; and at the Doncaster Royal infirmary. Hull health authority also runs such a team, which is one of a range of services that the authority has available to meet local needs by mixing home and day or in-patient care as it finds most effective.

The Department's policy on terminal care was clearly and crisply set out in the 1980 Wilkes report, which recommended an integrated system of care to be developed by health authorities, with an emphasis on co-ordination between the primary care sector, the hospital sector and the hospice movement. A current departmental initiative began last December with a conference opened by His Royal Highness The Prince of Wales and addressed by my right hon. Friend the Minister for Health, which was organised jointly by the Department and the National Association of Health Authorities. The conference was aimed at promoting collaboration between the National Health Service and voluntary organisations in planning and providing services for the terminally ill. My hon. Friend will be interested to know that the proceedings are to be published by Her Majesty's Stationery Office.

Other parts of this initiative include the promotion of medical and nurse training in terminal care; a scrutiny of regional health authorities' strategic plans to ensure adequate provision for terminal care; and the preparation of guidance to the NHS on planning services for the terminally ill. The Department is also working with the National Association of Health Authorities on the publication of a guide to good practice in terminal care, aimed for the autumn.

I have been speaking about services provided by health authorities and by voluntary organisations to care for people in hospital, in hospices and in their own homes, and of our efforts to improve these services. I turn now to another important aspect of the overall support for these households and families under emotional and practical stress — financial assistance through the social security system.

Many of those who provide care are married women, and I am glad that my hon. Friend has welcomed our initiative in extending invalid care allowance to married women. This extension will give an estimated 70,000 married women carers an allowance of their own for the first time and remove the discrimination which has existed in legislation since the allowance was introduced. As the House will know, we have backdated the extension to 22 December 1984 and any claims made by married women which we receive by 31 December this year will be backdated to 22 December 1984 if the conditions were satisfied then. This is a tangible illustration of our commitment to care in the community, and I know that it has been widely and warmly welcomed as a recognition of the role of carers and of married women in particular.

I shall now turn to the new measures on income support and the social fund. My hon. Friend will know that our proposals for income support are intended to ensure that disabled people receive help much more easily. We are moving away from the system of weekly additions for specific items, which has become complex and confusing, and in which help often depends on detailed, often intrusive, questions and out-of-date criteria. We intend that in future additional help will be based on clear, understandable and objective criteria, and disabled people will receive a new disablement premium. On the illustrative figures published with the White Paper, the overwhelming majority of people who qualify for the proposed new premium will gain. On average, those under pension age will gain over £4 a week and 90,000 people will gain over £5 a week. I know that my hon. Friend, who played a distinguished part in Committee on the Social Security Bill, will welcome this.

In addition, we have recently introduced a new element to income support, directed primarily at helping severely disabled people. This is in response to concern expressed about the small group of severely disabled people, particularly those who might currently receive supplementary benefit in respect of high additional requirements for domestic assistance. We have therefore announced that an additional premium will be paid to severely disabled people who are living alone if they receive the higher rate for attendance allowance and there is no one eligible for the invalid care allowance—or receiving it—in respect of that person's need for care. In that fashion we are directing help simply and without an elaborate assessment to a group of people most likely to need extra support care. We estimate that up to 10,000 people could qualify for this extra premium.

These improvements in income support are complemented by the recognition given in the social fund to community care objectives. My hon. Friend spoke about this matter, which has been the subject of some debate and some controversy in recent months.

From the beginning we have made it clear that, while payments from the social fund for other than maternity or funeral expenses should be recoverable from the person seeking help, this would not apply to payments made for the purposes of care in the community. I emphasise that point because the social fund is in two quite distinct parts. The part that deals with community care will be determined with grants and not recoverable loans. Those payments can cover a variety of contingencies and I shall certainly look most carefully at my hon. Friend's suggestion of payments to meet special needs faced by disabled or frail elderly people who might otherwise be forced into residential or nursing home care. I reiterate that in these circumstances a payment is likely to be a grant rather than a loan and therefore not recoverable. I am sure my hon. Friend will accept that and agree that it shows our concern to ensure that cash benefits remain in tune with our wider community care objectives.

I have listened with care and sympathy to my hon. Friend's remarks about the problems which the six-month qualifying period for attendance allowance can cause when terminal illness advances quickly and there is less than six months between the onset of disability and its conclusion. The proposal that there should be an easement for terminally ill people is one which I am sure attracts great sympathy, and cannot lightly be dismissed, but, as my hon. Friend said, the problem lies in finding a workable definition of terminal illness. Somebody diagnosed as terminally ill may decline rapidly within weeks, but may— and often does, with drugs, surgery and medical care—live for several months or years and need varying degrees of care during that time.

The main focus of concern is, of course, on those who die within six months, or so soon after that that attendance allowance offers little or no support. To extend allowance to these people would entail some system where they could be formally diagnosed as terminally ill and thereby escape the present qualifying period. That would create considerable practical difficulties, despite its attractions. In some cases, the doctor may for good reasons withhold or delay telling the patient and the relatives about the diagnosis of terminal illness, because of the belief that they would not be able to handle the explicit recognition of a situation that they might not even suspect. There is also the problem of possible time limits — should the six-month qualifying period be waived only if death is expected within, say, a year or some other period? In many cases, doctors would be reluctant to commit themselves to such a firm prognosis, and, even if they could be persuaded to overcome that reluctance, there would be practical difficulties, a number of which were set out by my hon. Friend, if the prognosis proved incorrect.

We have considered very carefully the representations made to us. I fear that I can only confirm that we have found no workable departure from the principle —accepted for many years by successive Governments—that attendance allowance is for the additional costs arising from long-term disability, and that this necessarily entails a qualifying period of, currently, six months. I have no doubt that this is one of many aspects which the Government will have to look at again in their comprehensive review of benefits for disabled people, which we have proposed should take place when we have the results in 1988 from the current survey by the Office of Population Censuses and Surveys.

The care of terminally ill people is clearly a deeply important and emotive issue, and I am glad that my hon. Friend has provided this opportunity to set on record what is being done. Obviously there is much more that can be done, but both in the field of services and of cash support we have substantial improvements in hand. But none of this can replace the care and devotion of both family and relatives in the home, and of skilled staff in hospitals and hospices, and it is right that I should close as I began by putting on record the debt of gratitude that we all owe to them.