House of Commons - Health - Minutes of Evidence

Select Committee on Health Minutes of Evidence

APPENDIX 21

Memorandum by The Law Society (CC 35)

The Law Society is the professional body for solicitors in England and Wales. The Society regulates and represents the solicitors' profession, and has a public interest role in working for reform of the law.

We welcome the announcement of the inquiry into the long standing problems in relation to NHS funded continuing care and the opportunity for submitting this paper to the Select Committee.

SUMMARY

The Law Society is concerned that the recent announcement by Stephen Ladyman that a National Framework ("the Framework") is to be developed, fails to address the fundamental problems in the NHS continuing care system.

Specifically the Framework will not address the core problems in relation to NHS continuing care if its content is incorrect and not inline with the Coughlan judgment. Also, if the Registered Nurse Care Contribution (RNCC) assessment tool is retained, the Framework will do nothing to correct the perception that only people whose needs exceed the high band are eligible for NHS health care.

According to the Coughlan judgment, the boundary between health and social care is not one of policy, but of law. Legally, there has been no material change in the scope of the NHS continuing health care responsibilities since inception and no amendment to the primary statutory obligation (albeit that the duty is now to be found in the consolidated 1977 NHS Act). However over the past decades, changes in the provision of long term chronic health care services following the development of community care has created confusion in relation to funding responsibilities and blurred the practical boundary between health and social care.

The Law Society is concerned that health care has been redefined as social care without any primary legislation or debate, with the effect being that the state may seek payment for chronic and long term health services.

We also believe that successive Governments have actively contributed to this confusion by issuing incorrect circular guidance and failing to ensure that Health Authorities' eligibility criteria and assessment methods comply with the judgment of the Court of Appeal in the Coughlan case. This has resulted in many vulnerable people and their families being forced to pay for health care which should be the responsibility of the NHS and free at the point of delivery.

The judgment in Coughlan clearly establishes that where a person's primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. Contrary to Government guidance, social services authorities may only purchase nursing care in strictly limited situations, in accordance with the judgment. Whilst much of the debate has concentrated on nursing home placements, it must be recognised that eligibility for NHS funded care is not relevant to the location in which that care is provided. Those people cared for in their own homes whose primary need is for health care may also be eligible for NHS funded care.

The Law Society further believes that the creation and development of the RNCC tool has proved to be the most significant reason why health bodies have failed to properly appreciate their full NHS continuing care responsibilities. It has replaced consideration of whether a person's primary need is for health care with an assumption that the only nursing for which a person cannot be forced to pay is registered nursing. We believe that this has distorted the true legal responsibilities of the NHS as set out by the Court of Appeal and led to widespread inequalities and injustice.

The Law Society believes that the eligibility criteria currently being operated are incompatible with the Coughlan judgment. We are concerned that the criteria would result in people being eligible for NHS funded care only if they fall within the "palliative care" category and are aware of cases where people are being forced to pay for services which are clearly health services, such as kidney dialysis, artificial feeding, catheter care, wound care and bladder washouts. This is based on the mistaken belief that chronic health care for patients in a stable condition is no longer the responsibility of the NHS.

The Law Society believes that a national framework will only be of assistance if the following conditions are met:

— The RNCC system is abolished.

— The Framework is one set of national eligibility criterion with a standard assessment method to be applied by all Strategic Health Authorities, PCTs and NHS Trusts in conjunction with local authority social services departments so that individuals whose primary need is a health need will receive fully funded care no matter where or in what setting they live.

— The Framework should not make any distinction between general or specialist nursing care, as both are nursing care arising from healthcare as opposed to social care needs.

Coughlan

— The Framework must properly address the health needs of people with mental health conditions.

— The Government should take proactive steps to ensure compliance.

BACKGROUND HISTORY

Until the programme of closure of long stay hospital wards and the development of care in the community, the division between health and social care responsibilities was relatively clear. Patients in a long stay hospital ward were the funding responsibility of the NHS. Primary care services in the community, such as nursing care, were not chargeable as they too were the responsibility of the NHS. Services provided by social services were means tested.

The advent of community care in the 1970-90s crucially changed the location of the care provision for the chronically ill. NHS facilities were removed for patients with continuing care needs, so that increasingly the chronically ill were cared in non hospital settings.[11]

The implementation of the NHS and Community Care Act 1990 (NHSCCA) in April 1993 gave local authority social services departments the responsibility for being the "gatekeepers" of access to services (including nursing home care). Access to a residential care home or a nursing home in the community was via an assessment of need under s.47 NHSCCA, where the lead assessing body was the local authority.

This led to a widely held misconception that as social services departments had become responsible for assessing need and arranging placements in nursing homes, the funding responsibilities for nursing home placements had correspondingly moved from the NHS to local authorities. This was, and remains, incorrect and is a major barrier to a proper understanding of the respective funding responsibilities of the NHS and local authority social services departments by practitioners in health and social care.

THE LEEDS COMPLAINT

The first major challenge to this originated as a Health Service Commissioner's complaint concerning a patient who had been discharged from a neuro-surgical ward and whose wife had been forced to pay for his continuing care in a private nursing home.[12] The Health Service Commissioner considered that even though the patient's "condition had reached the stage where active treatment was no longer required . . . 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" and concluded that the exclusion by the health authority of responsibility in such cases was maladministration.[13]

The Commissioner also took the exceptional step of having the report separately published[14]and 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.[15]

THE 1995 GUIDANCE—NHS RESPONSIBILITIES FOR MEETING NHS CONTINUING CARE NEEDS

In 1994 the Department of Health consulted on the proposed guidance but this draft was the subject of intense criticism.[16] The final 1995 guidance[17]attempted to distinguish between "general" and "specialist" nursing and health care, a distinction which is of crucial importance in understanding the way in which it has been interpreted.

However, the 2002-03 Health Service Commissioner's Report revealed[18]that the 1995 guidance was misapplied by many health authorities. The Report also indicates that the Department of Health took little positive action to require health authorities to redraft their continuing care eligibility criteria.[19]

THE COUGHLAN JUDGMENT

The Coughlan[20]case concerned a woman who had been left severely disabled following a road traffic accident several years previously. She required general nursing care and was living in a purpose built long stay hospital (in an individual flat). The dispute when the Health Authority decided to close the hospital, stating that as a result of a "change in the law" arising from the 1995 guidance the NHS was no longer responsible for chronic nursing care and was only responsible for specialist or acute healthcare for people with unpredictable needs.

The Court of Appeal judgment confirmed that:

(a) Where a person's primary need was for health care (in a nursing home setting, which was the context in that case) the NHS was responsible for the full cost of the placement.

(b) The distinction between "specialist" and "general" nursing or health care in the 1995 guidance was "elusive" and "idiosyncratic". However, as mere guidance could not alter the statutory responsibilities of the NHS there was no need to quash the guidance as being unlawful, although it was "unhelpful".

(c) It had been incorrect to define a person's eligibility for NHS funded care on the basis of the discipline of the nurse undertaking the task or the experience of the health care worker. The real issue was the condition of the person concerned.

(d) The starting point is the NHS Act 1977 and only if the NHS is not responsible (ie the person's need is not primarily for health care), may consideration be given to whether social services may be responsible for purchasing any nursing services under the National Assistance Act 1948.

(e) Social services could only purchase nursing care in very limited circumstances (and pass the cost to the service user) for patients whose health care needs are:

(i) 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

(ii) 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.

(f) Whether nursing was "merely incidental or ancillary" to the provision of the accommodation was a question of level and type of nursing care required—the "quality and quantity" test.

(g) The Court considered that Ms Coughlan's condition and that of the other two long stay residents fell wholly within the responsibility of the NHS (ie that despite the chronic and stable nature of their condition, social services were not permitted in law to purchase their care.)

THE 1999 GUIDANCE

Following the Coughlan judgment, the Department of Health issued follow up guidance in HSC 1999/180; LAC (1999)30. This guidance stated that it was "interim guidance" and asked health and local authorities to "satisfy themselves that their continuing" care policies were in line with the judgment.

It also gave a clear indication that further guidance would be issued "later this year" (at para 2) and many health authorities postponed any significant review of their plans until the promised guidance had been published. In the meantime, patients with similar and greater needs than Ms Coughlan continued to be charged for their health care services.[21]

THE RESPONSE TO THE ROYAL COMMISSION ON LONG TERM CARE

The Government's response to the 1999 Royal Commission report on long term care[22] was long awaited but did not accord with the judgment of the Court of Appeal. Instead of the anticipated reversal of the previous position which had led to the Coughlan case and the development of standard national eligibility criteria to ensure equality of access to health services, the Government accepted the minority view of the Commission, which recommended that only certain nursing care should be funded by the National Health Service and that "general" nursing and personal care would be chargeable.

S49 HEALTH AND SOCIAL CARE ACT 2001, THE 2001 GUIDANCE AND "FREE NURSING CARE FOR ALL"

In July 2000, the Government produced its new National Health Service Plan and confirmed that "nursing care in nursing homes will be fully funded by the NHS". Work started on the new Health and Social Care Bill to enable pooling of budgets, partnership working and changes to funding for nursing care in nursing homes.

S49 Health and Social Care Act 2001 defines the nursing care which cannot be purchased by local authority social services departments.[23] The effect of s49 was to prohibit the purchase of high level "registered nursing care" by social services authorities but it went no further. The Law Society believes that the implementation of s49 together with the introduction of the Registered Nursing Care Contribution (RNCC) assessment tool regarding "free nursing care" are not compatible with the Coughlan judgment.

(1) Nothing in the enactments relating to the provision of community care services shall authorise or require a local authority, in or in connection with the provision of any services, to—

(a) provide for any person, or

(b) arrange for any person to be provided with, nursing care by a registered nurse.

(2) In this section "nursing care by a registered nurse" means any services provided by a registered nurse and involving—

(a) the provision of care, or

(b) the planning, supervision or delegation of the provision of care,

other than any services which, having regard to their nature and the circumstances in which they are provided, do not need to be provided by a registered nurse.

On 1 October 2001 the Government announced "Free Nursing Care for All" stating:

As noted above, the Government felt unable to accept the full recommendations of the 1999 Royal Commission on long term care report and opted instead to fund only the registered nursing care costs of residents in nursing homes. [25]In England, Primary Care Trusts were charged with responsibility for deciding the extent of this obligation, and the Department of Health issued guidance[26] to explain how this should be achieved. The guidance set out three bands of nursing care, while in contrast the Welsh Assembly opted for a much simpler approach stating that that every resident would receive the same contribution from the health authority, originally £100 per week.

The guidance set out the Registered Nursing Care Contribution (RNCC) assessment tool and three bands for free nursing care[27] (high, medium and low). The Law Society is concerned that the creation of the RNCC and the eligibility criteria were not subject to Parliamentary scrutiny.

We believe that the high level of support (ie the "high" band) has been set well above the level defined by the Court of Appeal and this has caused considerable confusion amongst health authorities and trusts. Para 3.8 of the guidance describes the "high band" as follows:

3.8 People with high needs for registered nursing care will have complex needs that require frequent mechanical, technical and/or therapeutic interventions. They will need frequent intervention and re-assessment by a registered nurse throughout a 24 hour period, and their physical/mental health state will be unstable and/or unpredictable.

We are concerned that this "high band" only triggers a PCT contribution liability of £110 per week (when introduced). This will have a knock on effect for people who are placed in either the medium or low bands who despite having relatively high level health needs will not be provided with sufficient contributions to fund their health care.

It should be noted that neither the patient who was the subject of the Leeds NHS Ombudsman complaint nor Ms Coughlan meet these criteria. Indeed the Nurses Work Book which nurses use in determining the band a person should be placed, gives an example of a person who should be entitled to the high band, which bears great similarity to the condition of a nursing home resident considered in the Health Service Commissioner's report of February 2003 who, as a result of several strokes, had no speech or comprehension; was unable to swallow and required feeding by PEG tube.[28] The authority had rejected her claim for continuing care funding and the Ombudsman found.

"It is clear from the information I have seen about Mrs N's condition that she was extremely dependent and required a high level of physical care: like Miss Coughlan, she was almost completely immobile; and she was doubly incontinent. I have seen no evidence that she had breathing difficulties as Miss Coughlan had; but she required PEG feeding, which Miss Coughlan did not. She was unable to communicate verbally. 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. If the Health Authority had had a reasonable policy, and applied it appropriately, they would have provided NHS care for Mrs N. They failed to provide a service which it was their function to provide. I uphold the complaint."

The Law Society believes that patients in the high band of registered nursing care cannot lawfully have their care purchased by the local authority. The primary need of such patients is for health care, and according to the Coughlan judgment, the NHS is legally responsible for funding such a care package.

In addition, it is likely that most (if not all) patients assessed as falling within the "medium band" will also be entitled to continuing care. Para 3.9 describes the medium band in the following terms:

3.9 People whose needs for registered nursing care are judged to be in the medium banding may have multiple care needs. They will require the intervention of a registered nurse on at least a daily basis, and may need access to a nurse at any time. However, their condition (including physical, behavioural and psychosocial needs) is stable and predictable, and likely to remain so if treatment and care regimes continue.

It is again of some concern that both Ms Coughlan and the patient who was the subject of the Leeds NHS Ombudsman complaint would have difficulty qualifying for this band.

The Law Society was disappointed that the 2001 continuing care guidance was issued without proper consultation in line with Cabinet Office guidelines. We also disagree with its conclusion that the Coughlan judgment merely confirmed the status quo and that little action was required following the judgment. The guidance has been roundly criticised by the Health Service Commissioner, who argued (at Para 38) that its defects have caused "injustice and hardship" to those (almost certainly numbering several thousand) who have been compelled to pay for nursing care; nursing care that should have been provided free by the NHS.

We also believe that the creation and development of the RNCC tool has proved to be the most significant reason why health bodies have failed to properly appreciate their full NHS continuing care responsibilities. It has replaced consideration of whether a person's primary need is for health care with an assumption that the only nursing for which a person cannot be forced to pay is registered nursing. The Law Society believes that this misrepresents the legal responsibilities of the NHS as provided by the Court of Appeal.

THE HEALTH SERVICE COMMISSIONER

In February 2003, the Health Service Commissioner published a Special Report "NHS Funding for the Long Term Care of Elderly and Disabled People—HC399" as a result of serious concerns that Strategic Health Authorities were continuing to devise and apply eligibility criteria which were too restrictive.

Importantly, the Report recommended that the Department of Health should take concerted action to minimise variations in eligibility criteria and produce national guidance:

"The Department of Health should review the national guidance on eligibility for continuing NHS health care, making it much clearer in new guidance the situations when the NHS must provide funding and those where it is left to the discretion of NHS bodies locally. This guidance may need to include detailed definitions of terms used and case examples of patterns of need likely to mean NHS funding should be provided."

The Ombudsman's recommendation states that the Department should

"support and monitor the performance of authorities and primary care trusts in this work . . . (including) . . . assessing whether, from 1996 to date, criteria being used were in line with the law and guidance. Where they were not, the Department . . . need to co-ordinate effort to remedy any financial injustice to patients affected."

Further the Ombudsman recommended that the Department "be more proactive in checking that criteria used in the future follow the guidance."

Following publication of this Report, the Department of Health asked Strategic Health Authorities (SHAs) to identify those people who may have been wrongly denied funding and to conduct reassessments, which were to have been completed by the end of December 2003. Most complaints received by the Commissioner were referred back to the SHAs for reassessment according to this process.

According to the Commissioner's annual report for 2003-04, the volume of applications for reassessment was far greater than anticipated and the Department of Health extended the deadline for dealing with them to March 2004. However, by that time only 57% of the retrospective reviews had been undertaken (6,713 out of 11,724), which the Commissioner described as "disappointing" given the large numbers of people affected. The Commissioner also criticised the lack of support given by the Department of Health to SHAs and Primary Care Trusts (PCTs) in undertaking the reviews. The Department estimated that £180 million would be the cost of recompense to 31 March 2004 and the Health Minister Stephen Ladyman confirmed in the House of Commons that 770 cases had resulted in compensation being payable.[29]

On 27 February 2004, the Continuing Care (National Health Service Responsibilities) Directions 2004 came into force, applying to all SHAs and PCTs in England. They include a definition of continuing care as:

"care provided over an extended period of time to a person aged 18 or over to meet physical or mental health needs which have arisen as a result of disability, illness or accident"

The Directions provide that by 30 April 2004 each SHA must have developed a single set of eligibility criteria to be applied by all PCTs within the area. Before establishing or revising the criteria the SHA must take such steps as are reasonable to obtain the agreement of the PCTs and all local authorities in the relevant area.

These Directions, along with the Delayed Discharge Directions, place a qualified obligation on the PCT to undertake an assessment of the person's eligibility for NHS funded continuing care "where it appears there may be a need for such services" prior to the issue of an assessment notice regarding delayed discharge.

Further publicity was generated by the Ombudsman's report into the Pointon[30] case, which concerned the refusal of a PCT to provide continuing care funding in a patient's own home as opposed to a nursing home or hospital. This case involved a man with Alzheimer's Disease who required continuing care and considered the application of the criteria by way of an assessment tool which focused on physical care rather than the person's psychological condition. A recommendation was made that

"SHAs should review their eligibility criteria to ensure that the criteria for funding at home, and the recognition of patients' psychological as well as physical needs, are clearly defined."

The Law Society is concerned by the different approach to NHS funded continuing care regarding mental, as opposed to physical health care, and that little action appears to have been taken to implement the recommendation made in Pointon. We believe that people suffering from mental distress, particularly with dementia which may be controlled within a nursing home environment or in their own home, are discriminated against as far as eligibility for continuing care is concerned. It is more difficult for such persons to establish that their primary need is for health, as opposed to social care, than residents whose treatments involve physical health care interventions.

The most recent report of the Health Service Commissioner[31]was published shortly after the announcement from Stephen Ladyman in December 2004 and again describes a continuing picture of chaos, complex procedures, delays, and injustice among those seeking to establish their eligibility for continuing care.

THE ANNOUNCEMENT OF THE NATIONAL FRAMEWORK FOR NHS FUNDED CONTINUING CARE

The Law Society is concerned that the recent announcement by Stephen Ladyman in December 2004 that a national framework is to be developed, does not address the fundamental issues.

The fundamental problem is that the Government has not implemented the judgment in the Coughlan case. We are particularly concerned that the conditions described in the RNCC bands bear no resemblance to the thresholds for entitlement to NHS funded continuing care as laid down by the Court of Appeal. Unless the legal position is properly understood and consistently applied, the problems will continue and any framework which is based on anything less than the Coughlan judgment, will create further inequality.

The Law Society believes that if the RNCC system of "free nursing care" is retained, a national framework will do nothing to correct the perception created by the RNCC system that only those people whose needs exceed the high band are eligible for NHS fully funded care. We believe that people in the high and medium band are legally eligible for NHS funded continuing care. It must be remembered that admissions to nursing homes are governed by strict criteria applied by local authority social services departments following an assessment of need. Only those patients who cannot be cared for elsewhere are admitted to nursing homes (unless the social services department is not involved, which is unusual).

The establishment of a framework will not resolve the issue of inconsistencies between SHAs while different eligibility criteria for different SHA areas are permitted. The NHS is a national service and therefore a person with a particular condition should be able to approach any SHA in the country and have the same right to health services. Allowing different areas to develop their own criteria leads to inequality on a postcode basis and allowing different PCTs and NHS Trusts to develop their own "assessment tools" will continue the differential treatment of people in different areas of the country.

February 2005

11 Harding, Meredith and Wistow "note that between 1983 and 1993 there was a 30% (17,000) reduction in the number of long term geriatric and psychogeriatric NHS beds and the House of Commons Health Committee (2002) noted that between 1988 and 2001 there had been a loss of 50,600 such beds". Back

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

13 Sir William Reid (the then Commissioner) asserted "this patient was a highly dependent patient in hospital . . . 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, [the NHS bodies] regarded themselves as having no scope for continuing to discharge their responsibilities to him". Back

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

15 Virginia Bottomley, Secretary of State for Health, 4.11.94. Back

16 See for instance L. Clements (1994) "Shifting sands: the draft NHS continuing care guidance" in Community Care Journal 29.9.94 p 24-25. Back

17 LAC (95)5/HSG (95)8 "NHS Responsibilities for Meeting Continuing Health Care Needs". Back

18 Second Report for Session 2002-03 NHS funding for long term care; Stationery Office. HC 399. Back

19 (as she observes at para 21) "My enquiries so far have revealed one letter (in case E.814/00-01) 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". Back

20 R v North and East Devon Health Authority ex p Coughlan [2000] 2 WLR 622: [2000] 3 All ER 850. Back

21 A report by the Royal College of Nursing in 1999 ("Rationing by Stealth") asserted that the continuing care policies of over 90% of health authorities were as deficient as those of the health authority in the Coughlan case. Back