Feature

posted 1 Mar 1997 in Volume 2 Issue 3

Long Term Care - Whose Responsibility?

Margaret Richards examines where the responsibility for long term care currently lies, under several different scenarios.

Given this country's consistently high level of commitment to the NHS over the past 50 years, it is surprising that there has been so little informed debate about the serious erosion of the fundamental "cradle to grave" philosophy of healthcare in respect of patients (often elderly) with chronic physical or mental impairments, who need long term nursing care.

Even if it were conceded that some form of "rationing" of NHS resources has become inevitable as a consequence of expensive technological advances, coupled with increasing public expectations of medical science, the publicity afforded to issues which could quite properly be regarded as on the margins of "health" care (some aspects of assisted reproductions, for example) has tended to eclipse the fact that older clients are frequently having to fund for themselves what most people would regard as mainstream NHS provision.

Examples:

i) Client A, aged 65, who has suffered a severe stroke leaving her largely paralysed, without speech, doubly incontinent and needing to be fed manually.

ii) Client B, aged 80, who has advanced Alzheimer's Disease, frequently wanders away from home, and is abusive to his wife, who cares for him.

iii) Client C, aged 75 and diabetic, who has had a leg amputated, has failing eyesight, is showing symptoms of Parkinson's Disease, and is deeply depressed.

The purpose of this and a subsequent article is to examine how far NHS provision may still be available for such clients. Experience suggests that patients, and their advisers, who understand how care responsibilities are allocated between the NHS and social services departments of local authorities are best placed when it comes to securing NHS provision.

Given the high cost of intensive nursing care the allocation of responsibility for providing it carries significant financial implications, particularly for patients with means, and there is no doubt that good legal advice leads to better outcomes for clients.

The Legal Duty to Provide a Comprehensive Health Service

The only statement of the responsibilities of a "comprehensive" national health service is to be found in section 3(1) of the National Health Service Act (1977)(NHSA).

"It is the Secretary of State's duty to provide throughout England and Wales, to such extent as he considers necessary to meet all reasonable requirements -

a) hospital accommodation;

b) other accommodation for the purpose of any service provided under this Act;

c) medical, dental, nursing and ambulance services;

d) such other facilities for the care of expectant and nursing mothers and young children as he considers are appropriate as part of the health service;

e) such facilities for the prevention of illness, the care of persons suffering from illness and the after-care of persons who have suffered from illness as he considers are appropriate as part of the health service;

f) such other services as are required for the diagnosis and treatment of illness."

It is clear that section 3 imposes on the Secretary of State a "target" duty, rather than a duty owed to individuals; he must therefore exercise judgement about how to use available resources in the interests of the community at large.

In 1948, when the welfare state was set up, it was intended that "sick persons who need treatment in hospital" were to be the responsibility of the NHS, whilst the new local authorities were to provide "comfortable" accommodation for "older" people who could not "wholly" look after themselves (Cmd 7248, para 24). For many years after that hospitals provided psycho-geriatric beds for victims of strokes, dementia suffers, or for frail older people with no one to care for them. There was also the option for the NHS to commission beds in private nursing homes (section 23 NHSA 1977). Before 1993 many independent providers of nursing home care were the beneficiaries of block contracts with district health authorities.

DHSS Funding of Nursing Care

In 1979 a relatively unremarked amendment to social security regulations paved the way for a gradual withdrawal by the NHS of its provision for continuing care. Supplementary benefit (later income support) became available to fund placements in private nursing homes for patients of modest means. Until 1985 DHSS payments were available to meet the full cost of care provided - an open cheque book, leading rapidly to price inflation - an even after that benefit continued to be paid at a considerably enhanced level, well above the rate for claimants living at home. Such entitlement constituted, in effect, a "perverse incentive" towards residential care (Audit Commission 1986), and a drastic alteration in funding arrangements for such care became the hidden agenda underlying Part III of the National Health Service and Community Care Act 1990, which was implemented in April 1993.

Once the DHSS took over responsibility for funding many patients' care the NHS became free to invest its resources elsewhere, and could take the opportunity, in particular, to begin closing its long-stay beds, a move which was also consistent with the community care policies then being developed by government.

Changes brought about by Part III of the National Health Service and Community Care Act, 1990 (NHSCCA)

The implementation of Part III of the NHSCCA in April 1993 greatly accelerated the cutback in nursing care services. Section 42 extended local authorities' responsibilities for providing residential accommodation for people who were elderly, disabled or infirm, to include people needing residential care because of "illness"; in other words local authorities acquired a new duty to arrange or provide nursing home care.

The White Paper on Community Care (Cm 849) emphasised the continuing role of the NHS:

"Health authorities will need to ensure that their plans allow for the provision of continuing residential health care for those highly dependent people who need it" (para 4.21).

Nevertheless the statistics speak for themselves. Provision of continuing care and psycho-geriatric beds in hospitals was reduced by over 30% between 1990 and 1993. Between April 1993 and April 1994 there was a further 10% cut.

The Leeds Case

Since April 1993 local authorities' responsibilities to provide nursing home care have existed concurrently with the duty of the NHS to provide nursing and aftercare services under section 3 NHSA 1977. For the individual patient it matters a great deal which agency in fact accepts responsibility for his or her nursing care: NHS care is free at the point of delivery; care arranged by local authorities has to be charged for (section 22 NAA 1948), and is means tested. It is, therefore, important to identify the extent to which the NHS can legitimately decline to accept its section 3 responsibilities and, in effect, pass the buck to the local authority.

A complaint determined by the Health Service Commissioner in 1993 brought this issue to the fore. The victim of a catastrophic stroke had been discharged from a neuro-surgical ward to a private nursing home. The health authority under investigation neither provided hospital beds for people with neurological conditions, nor made contractual arrangements with nursing homes in the independent sector. In ordering the authority to refund to the patient's relatives substantial sums which they had been obliged to spend on nursing home fees, the Commissioner stated:

"This patient was a highly dependent patient ....... and yet, when he no longer needed care in an acute ward but manifestly still needed what the National Health Service is there to provide, they regarded themselves as having no scope for continuing to discharge their responsibilities to him because their policy was to make no provision for continuing care. The policy had the effect of excluding an option whereby he might have the cost of his continuing care met by the NHS. In my opinion the failure to make available long-term care within the NHS for this patient was unreasonable and constitutes a failure in the service provided by the Health Authority".

Publication of the Commission's highly critical report cause the NHS Executive to seek to clarify the responsibility for meeting continuing care needs. After an extended period of consultation, guidance entitled "NHS Responsibilities for meeting continuing health care needs" was published in February 1995 (HSG (95)8; LAC(95)5).

The New Guidance emphasises that the NHS remains responsible for arranging and funding a range of services to meet the continuing physical and mental health needs of older people and others. In particular:

"All health authorities and GP Fundholders should arrange and fund an adequate level of service to meet the needs of people who because of the nature, complexity or intensity of their healthcare needs will require continuing inpatient care arranged and funded by the NHS in hospital or in a nursing home"

The Guidance sets out four eligibility criteria for NHS funded care, viz:

* where the complexity or intensity of a patient's medical, nursing care or other clinical care or the need for frequent not easily predictable interventions requires the regular supervision of a consultant, specialist nurse or other NHS member of the multi-disciplinary team (in most cases interventions might be weekly or more frequent);

* where a patient requires routinely the use of specialist healthcare equipment or treatments which must be supervised by specialist NHS staff;

* where a patient has a rapidly degenerating or unstable condition which means that s/he will require specialist medical or nursing supervision;

* where a patient has finished acute treatment or inpatient palliative care, but the prognosis suggests that s/he is likely to die in the very near future.

The Guidance goes on to say that health authorities in collaboration with local authorities, must produce local eligibility criteria for continuing health care, to reflect the particular needs of their local population. Implicitly, local criteria are to elaborate on the conditions set out above, or possibly to extend them. Since the stated responsibilities are meant to be an integral part of NHS provision, it would not be appropriate for local guidance to restrict them further.

By 1st April 1996 all new health authorities were required to have their local policies and eligibility criteria in place. Implementation is to be reviewed by April 1997. Two things are now clear:

i) The setting of local priorities for continuing care means that "entitlement" varies up and down the country. In one area, a chronically ill elderly patient may receive long-term inpatient care in an NHS funded unit, while in another area a patient with similar needs may be placed by social services in a nursing home and will have to meet the cost of the bed.

ii) It is apparent that some of the local eligibility criteria are more restrictive than the original Guidance, and place too much emphasis on the need for patients to meet multiple criteria in order to qualify for NHS funded care. The NHS Executive stated last year that there should not be "an over-reliance on the needs of a patient for specialist medical supervision in determining eligibility for continuing in-patient care". (EL (96)8).

Nevertheless local criteria do place an emphasis on "specialist" care, and a realistic perception now is that basic long-term nursing care for chronically but not acutely ill patients, is no longer to be regarded as part of a comprehensive National Health Service.

Where, however, an individual client is suffering from what by any normal standards would be regarded as significant impairment or disability, and needs substantial nursing care, legal advisers should be prepared to test out their local eligibility criteria.

Hospital Discharge Procedures

Since 1982 there has been a 25% decrease in the number of acute care hospital beds. Throughput time between admission and discharge has been reduced by one-third. Increasingly there is pressure to vacate an acute care bed as soon as the patient's condition has stabilised, and elderly people now leave hospital more infirm and more dependent than in the past. At the point of discharge crucial decisions have to be made as to they type of continuing care which will be made available for the patient, and increasingly discharge is the watershed at which the critical interface between health and social care, and between free care and means tested care, is exposed.

The new NHS Guidance referred to above emphasises the importance of having effective discharge procedures to ensure that patients do not leave hospital without adequate arrangements being made for their continuing support, and without a full understanding of the financial implications of their discharge.

NHS consultants, in consultation with nursing staff, are responsible for deciding when a patient no longer needs acute care. Where intensive long-term support is likely to be required, a decision about discharge should be taken only after an appropriate multi-disciplinary assessment of the patient's needs has been conducted under section 47 of the NHSCCA 1990. The patient, relatives and carers or prospective carers must be consulted at every stage and must, in particular, be given adequate information to enable them to understand the discharge process and to take sensible decisions about continuing care. In addition the Carers (Recognition and Services) Act 1995 allows an informal carer to ask for a separate assessment of his or her ability to provide and to continue to provide appropriate care for the patient.

Following the assessment the patient's consultant must consider the available options, in consultation with nursing staff and other members of the multi-disciplinary team. The Guidance (para 21) lists the following options:

a) continuing in-patient care arranged and funded by the NHS;

b) a period of rehabilitation or recovery arranged and funded by the NHS;

c) discharge from NHS inpatient care to a placement in a nursing home or residential care home arranged and funded by social services or by the patient and his or her family;

d) discharge home, or to other accommodation, with a package of social and health care support.

In considering the patient's needs the multi-disciplinary team must consider whether or not s/he meets the local eligibility criteria for NHS continuing care, so as to raise the possibility of options a) or b).

The Guidance states that patients who have been assessed as not requiring NHS continuing inpatient care "do not have the right to occupy indefinitely an NHS bed (para 27). The implications of this paragraph do not as yet appear to have been tested in the courts. Newspaper references this winter to "bed blocking" in the NHS indicate that, as yet, hospitals have not been prepared to discharge patients against their will. Nevertheless there are worrying signs that this may happen before much longer.

New Review Procedures

The Guidance creates a new option for challenging decisions about discharge from hospital. Para 30 states that patients, their families or carers may ask the health authority to review a decision on eligibility for NHS continuing inpatient care. Further Guidance (Arrangements for Reviewing Decisions on Eligibility for NHS Continuing In-patient Care: HSG (95)39; LAC (95)17) provides for further extensive consultation where a patient is unhappy about the proposed care arrangements, and ultimately for the matter to be referred to a review panel, consisting of an independent chair and single representatives of the health authority and local authority. The panel has two functions:

* to check that proper procedures have been followed in reaching decisions about the need for NHS continuing in-patient care;

* to ensure that the local eligibility criteria for NHS continuing care have been properly and consistently applied.

Conclusions

A further article in the next edition of ECA will address in more detail the review procedure, possible outcomes and in particular, the ways in which the legal adviser may be able to influence those outcomes. In preparation for that discussion two conclusions may be drawn from what has already been said:

(i) Admission to hospital is a moment of great stress of patients, their families and carers. In negotiating the discharge process independent advice and support may be a lifeline. The Guidance on reviewing decisions highlights the possibility that the patient will need an advocate (Para 14). There is now some evidence, however, that volunteer advocates may lack the skills and/or the understanding of the legal and financial issues surrounding the process, with the result that the service may not be particularly effective. In the writer's opinion, based on experience, this ought to be perceived as an important role for the legal adviser.

(ii) Some very fundamental questions are raised when decisions are taken regarding continuing care. They expose the extent to which the social insurance philosophy which as underpinned our comprehensive health service since 1948, is now under threat. Free NHS care is still said to be the cornerstone of this philosophy, but advisers are likely to encounter a reluctance on the part of two agencies most concerned with the delivery of long term care to address this issue via a straightforward way and indeed a tendency to obscure it altogether. Clients are entitled to know, in detail, the financial implications of any care plan, and the legal adviser must ensure that proper information is provided. There should be no question of any decision about the clients need for care being influenced by the amount of his/her resources, but equally agencies should not be allowed to avoid the financial implications of their decisions for individual patients, like those in the examples quoted and for their families.

Margaret Richards, Solicitors and Consultant on Community Care