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The NHS's continuing care responsibilities
Solicitor Luke Clements gives a historical overview of the debate about continuing care responsibilities.

The debate over continuing health care responsibilities is not new. Means, Morbey and Smith (79) chart the organisational tensions that have existed over the health/social care divide since the formation of the NHS.

They conclude that these have been characterised by a failure of the NHS to invest in community health services or to transfer significant resources to social services (85).

They describe how the conflict has generally been expressed in debates over what is health care and what is social care.

One example they cite is the Boucher Report of 1957 - which addressed local authority concerns that their residential homes cared for many people who ought to be cared for in hospital.

The report led to circular guidance outlining the respective responsibilities of the welfare and hospital authorities; welfare authorities were to provide:

  • care of the otherwise active resident in a welfare home during minor illness, which may well involve a short period in bed

  • care of the infirm (including the senile) who may need help in dressing, toilet, and so on, and may need to live on the ground floor because they cannot manage stairs, and may spend part of the day in bed (or longer periods in bad weather)

  • care of those older persons in a welfare home who have to take to bed and are not expected to live more than a few weeks (or exceptionally months). Who would, if in their own homes, stay there because they cannot benefit from treatment or nursing care beyond help that can be given at home, and whose removal to hospital away from familiar surroundings and attendance would be felt to be inhumane (80)

Hospital authorities, however, were to take responsibility for:

  • care of the chronic bedfast who may need little or no medical treatment, but who do require prolonged nursing care over months or years

  • convalescent care of older sick people who have completed active treatment, but who are not yet ready for discharge to their own homes or to welfare homes

  • care of the senile confused or disturbed patients who are, owing to their mental condition, unfit to live a normal community life in a welfare home (81)

Although the demarcation of the health/social care boundary described in the Boucher Report is a long way from the situation today, legally there has been no material change in the scope of the NHS's continuing health care responsibilities since that time.

There has been no amendment to the primary statutory obligation (albeit that the duty is now to be found in the consolidated NHSA 1977). There has been no ministerial statement, no direction by the secretary of state or any other kind of announcement to the effect that the entitlement to continuing health care has been curtailed.

The material changes have been in terms of policy and funding arrangements - most significantly in the last 25 years, the availability of supplementary benefit payments (later income support) to cover the cost of private nursing home accommodation.

This situation led to the closure of many NHS continuing care wards (82), with the patients being transferred to privately-run nursing homes funded by the social security budget.

On 1 April 1993 the higher-rate income support payments for nursing and residential care homes were withdrawn and the social services authorities became the 'gate-keepers' for such community placements.

This led to a general, but incorrect, assumption that the NHS no longer had the same responsibility for funding long-term care.

The fact that social services authorities were (for the first time) empowered to make payments towards the cost of independent nursing home placements also encouraged the view that the NHS was no longer an agency responsible for making similar payments.

In fact, the responsibility for the care of persons in need of nursing home accommodation is an overlapping one between the two services.

The effect of this shift in the provision of continuing care was the subject of comment by the Audit Commission, which noted a significant rise in local authority funding for nursing home placements (over and above what would have been predicted), describing this trend as "worrying" and suggesting that it was due to "a combination of rising demand from within the community and increasing pressure from hospitals" (83).

The Health Service Commissioner's 1994 Report

Throughout this period many individuals, their carers and relatives paid substantial sums to private nursing homes in situations where previously the care would have been provided without charge by the NHS.

This aspect came to the fore with the publication by the Health Service Commissioner of a highly critical report into a premature hospital discharge by the Leeds Health Authority.

The complaint concerned a patient who was discharged from a neuro-surgical ward in the Leeds General Infirmary, forcing his wife to pay for his continuing care in a private nursing home (84). The Commissioner in his report stated (at paragraph 22):

"No one disputes that by August 1991 his condition had reached the stage where active treatment was no longer required but that he was still in need of substantial nursing care, which could not be provided at home and which would continue to be needed for the rest of his life.

"Where was he to go? Leeds Health Authority's policy, as explained by their chief executive, was (and still is) to make no provision for continuing care at NHS expense either in hospital or in private nursing homes. In particular I note that the contract for neurosurgical services makes no reference to continuing institutional care.

"This patient was a highly dependent patient in hospital under a contract made with the Infirmary by Leeds Health Authority; 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.

"I uphold this complaint. I recommend that Leeds Health Authority make an ex-gratia payment to the complainant to cover those costs which she has already had to incur and to provide for her husband's appropriate nursing care at the expense of the NHS in the future.

"I recommend that the authority review their provision of services for the likes of this man in view of the apparent gap in service available for this particular group of patients."

The Health Ombudsman was so concerned about the situation disclosed by the Leeds complaint that he took the exceptional step of having his report separately published (85). In response, the government undertook to issue guidance, indicating:

"If in the light of the guidance, some health authorities are found to have reduced their capacity to secure continuing care too far - as clearly happened in the case dealt with by the Health Service Commissioner - then they will have to take action to close the gap (86).

The Health Service Ombudsman commented in similar terms in relation to other complaints concerning continuing care. In 1996, he published a short digest of investigations his office had made into complaints concerning long-term care (87).

A number of these have concerned health authorities who made no provision for continuing care arrangements (88) or whose arrangements were inadequate.

Complaint E985/94-95,89 for example, concerned an elderly patient who suffered a stroke and became unable to swallow and was fed by means of a gastric tube.

After her condition had stabilised in hospital her husband felt compelled to acquiesce in her discharge although she remained ill and incapacitated, and indeed died shortly after her admission to the nursing home.

Although the husband had had contact with a consultant, the ward staff, the hospital social worker and the GP, no-one had properly explained the various options available including the possibility that she would meet the criteria for NHS funded continuing care in a nursing home.

As a result of the Ombudsman's intervention, the health authority accepted responsibility for the nursing home fees.

The 1995 continuing care guidance

In February 1995, as a consequence of the Health Ombudsman's Leeds report, (91) continuing care guidance was published as a first step towards defining with greater precision the boundaries between the responsibilities of the NHS and social services authorities for continuing care (92).

The guidance required every health authority to prepare and publish local 'continuing health care statements' which spelt out which patients would be entitled to free continuing health care funded by the NHS.

As part of this process the government also announced procedures that enabled patients to challenge their discharge from in-patient hospital care (93).

Although in 1996 the Department of Health issued follow up guidance to improve the quality of continuing health care statements (94) the evidence suggests the 1995 guidance (which was repealed by the 2001 guidance - see below) was misapplied by health authorities and that the department was inactive in policing individual health authority continuing care statements (95).

The Coughlan judgment

In 1999 the Court of Appeal delivered its judgment in R v North and East Devon Health Authority ex p Coughlan. (96) It reinforced the finding of the Health Service Commissioner in the Leeds Health Authority complaint; that entitlement to NHS continuing care support arose, not merely when a patient's health care needs were complex, but also when they were substantial - the so called "quality/quantity" criteria (see below).

The medical condition of Pamela Coughlan was described by the court as follows (para 3):

"She is tetraplegic; doubly incontinent, requiring regular catheterisation; partially paralysed in the respiratory tract, with consequent diffculty in breathing; and subject not only to the attendant problems of immobility but to recurrent headaches caused by an associated neurological condition."

The Court of Appeal held that social services could only lawfully fund low level nursing care - low in terms of its quality and quantity. The court expressed this as follows (at para 30):

"(d) . . . There can be no precise legal line drawn between those nursing services which are and those which are not capable of being treated as included in such a package of care services.

"(e) The distinction between those services which can and cannot be so provided is one of degree which in a borderline case will depend on a careful appraisal of the facts of the individual case.

"However, as a very general indication as to where the line is to be drawn, it can be said that if the nursing services are:

  • merely incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide to the category of persons to whom section 21 refers and

  • of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide, then they can be provided under section 21

"It will be appreciated that the first part of the test is focusing on the overall quantity of the services and the second part on the quality of the services provided."

Additionally the court emphasised that the setting of a person's care was not determinative of eligibility for continuing health care funding. In its view "where the primary need is a health need, then the responsibility is that of the NHS, even when the individual has been placed in a home by a local authority" (para 31) and "the fact that a case does not qualify for inpatient treatment in a hospital does not mean that the person concerned should not be a NHS responsibility" (para41).

The continuing care policies of North and East Devon Health Authority were, it appears, not unusual. A 1999 Royal College of Nursing Report Rationing by Stealth suggested that the continuing care policies of over 90% of health authorities were equally deficient.

The 1999 continuing care guidance

The Coughlan judgment was pronounced on the 16 July 1999 and the following month the Department of Health issued follow up guidance; HSC 1999/180; LAC(1999)30.

This guidance stated that it was "interim guidance" and did little more than ask health and local authorities to "satisfy themselves that their continuing care policies were in line with the judgement".

Unfortunately it gave a clear indication that further guidance would be issued "later this year" (para 2) and this expectation of this further guidance led to many health authorities taking no decisive action in the wake of the Coughlan judgment (97).

The 2001 continuing care guidance

The Department of Health took two years to issue further guidance (HSC 001/015; LAC (2001)18). Although this guidance has been the subject of robust criticism by the Health Service Commissioner (98) (see below) it remains the relevant guidance (99).

The 2003 Health Service Commissioner's Special Report

In February 2003 the Health Service Commissioner published a special report concerning continuing health care. (100) The need for such a report stemmed from the large number of complaints that the commissioner had received on this issue (as had been the case with her predecessor in 1994).

She was trenchant in her criticism of the Department of Health's failure to provide clear guidance in conformity with the Court of Appeal's judgment in Coughlan; commenting (at para 31):

"I do not underestimate the difficulty of setting fair, comprehensive and easily comprehensible criteria . . . But that is all the more reason for the Department to take a strong lead in the matter: developing a very clear, well-defined national framework.

"One might have hoped that the comments made in the Coughlan case would have prompted the Department to tackle this issue . . . [however] authorities were left to take their own legal advice about their obligations to provide continuing NHS health care . . .

"The long awaited further guidance in June 2001 . . . gives no clearer definition than previously of when continuing NHS health care should be provided: if anything it is weaker, since it simply lists factors authorities should 'bear in mind' and details to which they should 'pay attention' without saying how they should be taken into account...

"I fear I would find it even harder now to judge whether criteria were out of line with current guidance. Such an opaque system cannot be fair."

Her report considered a number of complaints, including one against Wigan and Bolton Health Authority and Bolton Hospitals NHS Trust (101). The complaint concerned a patient who had suffered several strokes, as a result of which she had no speech or comprehension and was unable to swallow, requiring feeding by PEG tube (a tube which allows feeding directly into the stomach).

She was subsequently discharged to a nursing home. In response to the health authority's refusal to accept continuing care responsibility for the patient, the commissioner commented:

"I cannot see that any authority could reasonably conclude that her need for nursing care was merely incidental or ancillary to the provision of accommodation or of a nature one could expect social services to provide (paragraph 15).

"It seems clear to me that she, like Miss Coughlan, needed services of a wholly different kind."

The importance of this determination, is that the commissioner expressed the view (incontrovertible though it must be) that the patient could not by any stretch of the imagination, be considered to be a 'borderline' case. Effectively that the health authority's decision was Wednesbury unreasonable (see para 19.139 below).

The 2003 periodical Report of the Health Service Commissioner

The Health Service Commissioner's fifth (periodic) report - for the session 2002-03 (p102) carried summaries of three further investigations - all of which were indicative of inflexible and overly restrictive policies being operated by health authorities.

Directions

As a consequence of the Health Service Commissioner's 2003 special report the Department of Health issued directions:

"The Continuing Care (National Health Service Responsibilities) Directions 2004" (103). These provide, among other things, that each Strategic Health Authority shall:

  • establish a single set of eligibility criteria for the provision of continuing care by PCTs in its area

  • take such steps as it considers reasonable to obtain the agreement to the proposed criteria of each local authority in its area

  • create a review procedure for patients (where the dispute cannot be resolved informally) who wish to challenge PCT continuing care decisions. In such cases he or she may apply in writing to the SHA on receipt of which it "may" refer the matter to a panel (the membership of which is spelt out in the draft directions)

Extract from Luke Clements' book 2004 Community Care and the Law (3rd ed, 2004), published by Legal Action Group Education and Service Trust Limited, 242 Pentonville Road, London N1 9UN.

Footnotes

77 See HSC 2003/006; LAC(2003)7 paras 66-68 and HSC2001/17; LAC(2001)26 guidance 'Establishing a Responsible Commissioner' accessible at www.dh.gov.uk/assetRoot/04/06/97/97/04069797.pdf.

78 HSC 2003/006; LAC(2003)7 para 67.

79 Means, Morbey and Smith, From Community Care to Market Care? (Policy Press, 2002).

80 Ministry of Health (1957) Local authority services for the chronic sick and infirm Circular 11/50 London: MoH, as cited by Means, Morbey and Smith at page 78.

81 Ministry of Health (1957) Geriatric services and the care of the chronic sick HM(57) 86 London: MoH, as cited by Means, Morbey and Smith at page 78.

82 Between 1983 and 1993 there was a 30% (17,000) reduction in number of longterm geriatric and psycho-geriatric NHS beds - Harding et al 'Options for Long Term Care (HMSO, 1996) p8 and between 1988 and 2001 a loss of 50,600 such beds, see House of Commons Select Committee (2002) Delayed Discharges: Third Report, Vol 1 HC 617-I, 35 at www.publications.parliament.uk/pa/cm200102/cmselect/cmhealth/617/617.pdf.

83 Audit Commission report Taking Stock (December 1994), commenting on the pattern of hospital discharges (at para 32).

84 Health Service Commissioner Second Report for Session 1993-94; Case No E62/93-94 (HMSO).

85 Normally only an abbreviated selection of his reports is published twice yearly.

86 Virginia Bottomley, Secretary of State for Health, 4 November 1994.

87 Fifth Report for session 1995-96, Investigations of Complaints about Long-Term NHS Care, HMSO.

88 See for instance No E264/94-95 which concerned a 55-year-old stroke patient (in the selected investigations April-September 1995); W478/89-90 which involved the failure to provide NHS after-care to a woman who had suffered severe brain injuries (in the selected volume for October 1990-March 1991)

89 Against North Worcestershire Health Authority, selected volume for April-September 1996.

91 At para 3 it stated that the guidance "addresses a number of concerns raised in the report made last year by the Health Service Ombudsman'.

92 LAC(95)5; HSG(95)8 'NHS Responsibilities for Meeting Continuing Health Care Needs: WOC 16/95 and WHC(95)7 in Wales.

93 LAC(95)17; HSG(95)39.

94 See for instance EL(96)8 and EL(96)89 - discussed below.

95 Indeed the evidence suggests the contrary - as the NHS Ombudsman noted in her Second Report for Session 2002-2003: NHS funding for long term care; Stationery Office. HC 399 (at para 21) "My enquiries so far have revealed one letter (in case E814/00-01) sent out from a regional office of the Department of Health to health authorities following the 1999 guidance, which could justifiably have been read as a mandate to do the bare minimum".

96 R v North and East Devon Health Authority ex p Coughlan [2000] 2 WLR 622; [2000] 3 All ER 850; (1999) 2 CCLR 285, CA.

97 In this respect, see the comments of the Health Service Commissioner in her Second Report for Session 2002-2003 NHS funding for long term care; Stationery Office. HC 399.

98 Health Service Commissioner's Second Report for Session 2002-2003 NHS funding for long term care; Stationery Office. HC 399 para 38.

99 At the time of writing - December 2003.

100 Second Report for Session 2002-2003 NHS funding for long term care; Stationery Office. HC 399.

101 HC 399 at p24, para 1; Complaint No E420/00-01. 102 24 June 2003, HC 787.

103 Available at www.dh.gov.uk/assetRoot/04/07/46/91/04074691.pdf.

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