Feature

posted 2 Jun 2003 in Volume 8 Issue 4

Continuing NHS health care: Making sense of the confusion

At the end of February, the health service ombudsman published her Special Report on NHS Funding for Long-Term Care, which concluded that many people have been wrongly assessed as being ineligible for continuing NHS health care. Her findings created much publicity in the national press and many practitioners are sure to have felt the impact with increased inquiries from clients. In this two-part special feature, Caroline Bielanska, solicitor, TEP and freelance consultant, examines the background and the practical implications of the report.

Part one: The legal position

In part one of this two-part article, Caroline Bielanska clarifies the legal position and the relevance of the special report for those acting for the older, vulnerable client.

The background

Care provided by the NHS is free at the point of delivery, while care provided by social services is means tested. The responsibility for funding nursing care is a grey area, despite the introduction of free nursing care by a registered nurse, brought in by the Health and Social Care Act 2001. In many ways, the 2001 Act has made the problems worse and this will be further expanded later in this article.

After the introduction of the National Health Service Act 1946, care would be provided within the NHS at its expense for any person who needed little or no medical treatment, but required prolonged nursing care. Section 23 of the National Health Service Act 1977 gave the then district health authorities power to buy beds outside the NHS, often in nursing homes. This power is now exercised by primary care trusts that fund the care needed in their area.

Between 1993 and 1 April 2003, local authorities’ responsibilities to provide nursing-home care co-existed with the duty of the NHS to provide nursing and after-care services under Section 3 of the National Health Service Act 1977. Prior to this, the NHS had started to divest its responsibilities to the Department of Health and Social Security, which made payments for people in nursing homes, but from 1993, the financial burden shifted to social services. For those who did not qualify for financial help, however, as the NHS withdrew from long-term provision of nursing care, the burden fell on the individual.

With budgetary pressures, the situation was brought to a head after the well-publicised “Leeds Case” in 1994. The case involved a man who suffered a neurological condition. He was doubly incontinent, could not eat or drink without assistance, could not communicate, had a tumour in his kidney, cataracts in both eyes and occasional epileptic fits. It was accepted that he did not need active medical treatment but that he needed substantial nursing care. At the time, Leeds Health Authority had made no provision for such people. His family met the cost of his care but pursued a complaint to the health service commissioner who found that, in failing to make available long-term care beds within the NHS for the man, they had acted unreasonably and the action constituted a failure in service provision. The ombudsman said: “This patient was a highly dependent patient in hospital under a contract with the infirmary by the 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 also had the effect of excluding an option whereby he might have the cost of his continuing care met by the NHS.”

As a result of the Leeds case, the Department of Health published NHS Responsibilities for Meeting Continuing Health Care Needs ((HSG 95) 8), setting out the NHS responsibility for continuing care, which was heavily criticised in the case of R v North and East Devon Health Authority ex parte Pamela Coughlan ([2000] 3 All ER 850) as it focused heavily on the responsibility of the NHS for specialist nursing and medical care. Eligibility for continuing inpatient care depended on a need for ongoing, regular, specialist supervision on account of the complexity or intensity of nursing care, or a continuing need for frequent, unpredictable intervention, or for a person who was likely to die in the very near future. Health authorities have the discretion to determine their own eligibility criteria, provided that the national guidance is reflected appropriately. As a consequence, it has led to regional variations as to the definition of terminology.

There was clearly concern about the way health authorities were drawing up and applying their criteria, which focused on specialist health care as further guidance was issued in 1996 (Executive Letter (96) 8), which stated: “It will be important that eligibility criteria do not operate over restrictively and match the conditions laid out in the national guidance.” It went on to say: “An over reliance on the needs of a patient for specialist medical supervision in determining eligibility for continuing in-patient care. There will be a limited number of cases, in particular, involving patients not under the care of a consultant with specialist responsibility for continuing care, where the complexity or intensity of their nursing or other clinical needs may mean that they should be eligible for continuing inpatient care even though they no longer require frequent medical supervision.”

The Coughlan judgement

Pamela Coughlan was involved in a road traffic accident in 1971. As a result, she was a tetraplegic; doubly incontinent, requiring regular catheterisation; partially paralysed in the respiratory tract with the consequent difficulty in breathing; and subject to the problems of her mobility, requiring full personal care. In addition, she had headaches caused by an associated neurological condition.

She had, since the accident, been cared for by the NHS, first in a hospital, and then in purpose-built accommodation. The NHS wished to close the unit and it was planned by them that Miss Coughlan would become the responsibility of social services, on the assumption that general nursing care was the responsibility of social services. She sought judicial review of that decision and the issue for the court was whether the local authority could provide nursing care for a chronically ill person.

The Court of Appeal found that a local authority could only provide nursing care under section 21 National Assistance Act 1948 where the nursing services were:

Merely incidental or ancillary to the provision of accommodation, which a local authority is under a duty to provide;
Of a nature that a local authority could be expected to provide.

Miss Coughlan needed services of a wholly different category and as such, was the responsibility of the NHS. The judge also confirmed that, where the individual’s care was primarily one of health, the full cost of care was the responsibility of the NHS. The Coughlan case did not create new law but merely clarified it.

Health authorities were required to review their criteria to ensure they were in line with the judgement and then review cases in line with the revised criteria (HSG (1999) 180). It is clear from research undertaken by the Royal College of Nursing and the ombudsman’s special report that this has not happened in many areas.

The 2001 guidance

The previous guidance on continuing care has been cancelled and substituted by Continuing Care: NHS and Local Authorities Responsibilities (LAC (2001) 18). Paragraph 6 of the guidance states: “Continuing NHS health care describes a package of care that is arranged and funded solely by the NHS. It does not include the provision by councils of any social services.” In practice, however, the care arrangement may have been facilitated through social services as part of their involvement in the assessment of the person’s needs and, with increasing partnership arrangements in place between social services and the primary care trusts, this description can at times seem obscure. The funding for continuing NHS health care should, however, be from the NHS budget.

Annex C of the guidance sets out the key issues that should be considered when establishing and reviewing continuing NHS health-care criteria. It is not criteria in itself but operates as a framework:

The eligibility criteria or application of rigorous time limits for the availability of services by a health authority should not require a local authority to provide services beyond those they can provide under section 21 National Assistance Act 1948;
The nature, complexity, intensity or unpredictability of the individual’s health-care needs (and any combination of these needs) require regular supervision by a member of the NHS multidisciplinary team, such as the consultant, palliative care, therapy or other NHS member of the team;
The individual’s needs require the routine use of specialist health-care equipment under supervision of NHS staff;
The individual has rapidly deteriorating or unstable medical, physical or mental-health condition and requires regular supervision by a member of the NHS multidisciplinary team, such as a consultant, palliative care, therapy or other NHS team member;
The individual is in the final stages of a terminal illness and is likely to die in the near future;
A need for care and supervision from a registered nurse and/or a GP is not, by itself, sufficient reason to receive continuing NHS health care;
The location of care should not be the sole or main determinant of eligibility. Continuing NHS health care may be provided in an NHS hospital, a nursing home, hospice or in the individual’s own home.

These issues, like the former guidance, focus on complex, intensive, unpredictable and unstable medical conditions. Except for specialist heath-care equipment, there has been no specific mention of specialist care. With many health authorities not having reviewed their criteria since the Coughlan judgement, there are likely to be many existing criteria, which still focus on specialist care and may not cover the Coughlan type case. The guidance identifies at paragraph 21 that the key issues cover a “Coughlan type” case where the care is primarily one of health. With no clear division or definition of the terminology used, it is hard to see when someone with general nursing-care needs such as Pamela Coughlan would be the responsibility of the NHS, unless their case was very similar. It raises important issues at the time of the nursing assessment, which impact on funding.

Free nursing care–- the confusion goes on

The link between continuing NHS health care and free nursing care has further muddied the waters. From 1 October 2001 in England, and 1 December 2001 in Wales, nursing care provided by a registered nurse is free under the NHS to everyone who is assessed as being in need of it, and who is funding their own care.

In England, from April 2003, the NHS has taken responsibility for the funding of registered nurse care for local authority-funded residents. The local authority now only pays for the personal care and accommodation costs. In Wales, the local authority remains responsible for paying for the nursing care of residents they are funding until April 2004. The Department of Health’s Guidance on Free Nursing Care in Nursing Homes (LAC 2001 26) as the title suggests, focuses on nursing-home placements, which must be arranged through the NHS, even if it is delivered privately. The cost of personal and social care, and accommodation, is means tested, while the NHS funds the nursing care by a registered nurse.

Section 49 of the Health and Social Care Act 2001 excludes the provision of nursing care by a registered nurse from community-care services and as such, it is not the responsibility of the local authority. Local authorities are still able to arrange and contract for nursing care, which is not provided by a registered nurse, something the client will be means tested for.

The 2001 Act defines nursing care by a registered nurse in section 49(2) as: “Any services provided by a registered nurse and involving:

The provision of care;
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.”

In practice, many registered nurses are expected to spend most of their time supervising and delegating care, to the extent that much of what was typically considered a nurse’s role is now undertaken by unqualified staff. This includes drug administration, wound dressing, and tube feeding. The more the nursing care can be undertaken by other staff, the lower the amount of care being provided by a registered nurse, which means the NHS pays less for the care. As a result of this shift, the client will pay more for the cost of his nursing care, as a registered nurse is not providing it. The notion that good care homes will provide this level of nursing care as part of their usual package of care puts huge strain on care homes that can feel they are held to ransom by purchasers of care and have no choice but to deliver more for less.

The registered nurse care contribution (RNCC)

The lead nurse and co-ordinator (usually the same person) is responsible for determining the level of care required by a registered nurse for the care package in a nursing home. The contribution falls within one of three bands (see box one below), with definitions of terminology used.

Box one: The registered nurse care contribution

The low band: £40 per week
It applies to people whose needs can be met with minimal nurse input. The assessment will indicate that their needs could normally be met in another setting but they have chosen to place themselves in a nursing home. Needs might include, for example, a daily injection or bi-weekly wound care.

The medium band: £75 per week
This covers people with multiple care needs. They require intervention of a registered nurse on at least a daily basis, and may need a nurse at any time. Their condition is stable and predictable, however, and is likely to remain so if the treatment and care regime continues. The majority of people in nursing homes fall into this band.

The high band: £120 per week
This applies to people with high needs for registered nursing care and have complex needs that require frequent mechanical, technical and/or therapeutic interventions. They need frequent intervention by a registered nurse throughout a 24-hour period, and their physical/mental-health state will be unstable and/or unpredictable.

This vague terminology within the nursing-care guidance on the definitions of stability, predictability, risk and complexity (see box two below), is at times very similar to the guidance for continuing NHS health care. The terms “complex, unpredictable, unstable, frequent intervention” appear in both sets of guidance. Although the guidance on nursing care says the use of similar terminology should not be confused with the guidance for continuing care, it is impossible to see that how it cannot be confused. There should be a clear rationale for the decision with local audits to ensure consistency of decision making. Certainly, anyone acting for a person in the middle or higher bands of RNCC should consider a review, as they may be eligible for full NHS continuing health care. Practitioners should obtain a copy of the summary of the determination and ask for a review.

Box two: The definitions of stability, predictability, risk and complexity

Stable and predictable
Health and disease process/disorder, including emotional, physical, behavioural and psychosocial needs, are in a steady state, and are likely to remain so if correct treatment/care regimes continue. How the patient responds to their health or disease processes/disorder or to any internal or external triggers can be anticipated with some certainty through established interventions and regularly reviewed care plans.

Unstable and/or unpredictable
A fluctuating disease process/disorder, and /or emotional, physical, behavioural and psychosocial conditions, resulting in an alternating health state and requiring frequent or regular intervention or treatment. How the patient responds to their health or disease processes/disorder, or to any internal or external triggers, cannot be anticipated with certainty, and there is a requirement for ongoing assessment, care planning, intervention and review.

Minimal risk
Abilities present most of the time, but there is a need for regular reassessment of risk.

At risk
Abilities are compromised or absent most or all of the time, sensory loss is multiple, self-image is low. Frequent reassessment of risk is needed.

Medium complexity
Physical and mental needs are moderately complex: mechanical/technical and/or therapeutic assistance is needed regularly or intermittently. The interventions require regular reassessment.

High complexity
Physical and mental needs are highly complex; mechanical/ technical and/or therapeutic intervention is needed frequently, including frequent reassessment over a 24-hour period.

Appendix 6 in the Guidance on Nursing Care says: “Nothing in this guidance changes the duties of health authorities’ to arrange and fully fund services for people whose primary needs are for health care rather than for accommodation and personal care.” How this is to be determined is hard to answer and, in an attempt to clarify matters, supplementary guidance has been issued in March this year called Guidance on NHS-Funded Nursing Care (LAC (2003) 7), which says at paragraph 19: “NHS-funded nursing care is part of a spectrum of care, where people need a mixture of nursing and social care. It is different from, and is not a substitute for, fully funded NHS continuing care, where a person’s needs will be beyond the scope of what can be provided through the NHS-funded nursing care.” Unfortunately, it does not clarify the situation in the least. Is it saying that if the person needs more nursing care than the RNCC provides, then they will qualify for full NHS-funded care? One would think so, but the 2001 nursing guidance suggests there is another level of care between the higher band and being entitled to full NHS funded care. It states: “In some cases, the assessment and RNCC process will identify individuals who have exceptional long-term needs for nursing care, both in amount and type, yet which do not meet local criteria for continuing health care. In these cases, the NHS has responsibility to arrange or fund services the individual needs and should make arrangements on a case-by-case basis.” The 2003 guidance at paragraph 20 supports the idea that there is an additional level of care funded by joint placements of the NHS and social services where it says: “In the majority of cases, because of the specialist and multiple nature of the care they need...they are already likely to be receiving funding in excess of the high band of nursing care.” With such a confused situation, one can easily see patients like Pamela Coughlan applying for care post October 2001 and being told that, as the condition is stable and predictable, they qualify for the middle band of the RNCC. This clearly is incorrect.

The ombudsman’s report

In February, Anne Abraham published her first special report as the health service ombudsman. The report into NHS funding of long-term care contains the results of four investigations into complaints about the way health authorities set and applied their eligibility criteria for NHS funding for continuing care of older and disabled people. There are approximately another 12 cases being investigated.

Case X – Dorset Health Authority and Dorset Healthcare NHS Trust

Mr X had advanced Alzheimer’s disease and had similar care needs to Pamela Coughlan. The local health authority’s criteria for eligibility was such that if a person was sufficiently ill to require NHS care, then it would be provided in a local hospital and the only time that they would fund a care-home bed was if there was no such available bed. In addition, the criteria in relation to dementia patients implied that only those who needed clinical management by a consultant would be eligible. The complaint that the criteria were unreasonably restrictive was upheld. The ombudsman recommended that the local health authority should revise its criteria, then apply them to Mr X and, if he should have been eligible, compensate his estate. Government guidance and the Coughlan judgement established that just because Mr X needed care due to his disease, it did not follow that all his care had to be provided by the NHS. As Mr X’s condition was degenerative, however, he was more likely to have become eligible as time went by. This is an important point for practitioners, as the decision of whether a person is eligible is not a once-and-for-all decision. Consider reviewing your client if and when their health deteriorates.

Case N – Wigan and Bolton Health Authority and Bolton Hospitals NHS Trust

Mrs N had suffered several strokes and, as a result, she had no speech, was deaf, partially sighted and had little comprehension. She was unable to swallow, requiring PEG tube feeding. She was almost completely immobile, and doubly incontinent. The decision was made that she did not meet the criteria for continuing care as she did not require constant supervision of the consultant and her nursing needs did not require specialist nursing/clinical intervention and could be provided in a nursing-home setting. The ombudsman said: “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.”

As such, the complaint was upheld. The ombudsman recommended that the trust should remind staff responsible for carrying out such assessments to record the basis of their decisions in the medical records and to clarify who is party to the eligibility decision. This case is important because the needs as described in the ombudsman’s report are almost identical to an example given in the workbook nurses use when assessing which band a person should be placed in. The example of a woman who would need the highest band of funding is a person who has suffered a stroke, loss of speech, unable to swallow so needs PEG feeding, partial paralysis and poor balance and co-ordination, doubly incontinent, has a pressure sore, and is tearful and depressed.

Case Z – Berkshire Health Authority

Mrs Z, aged 90, had vascular dementia. She also had very challenging behaviour. After a fall in hospital, she could no longer walk. She needed full help with all activities of daily living with the exception of feeding. The health authority took the view that she did not meet the criteria or full NHS funding but, as she needed to be cared for in a specialist nursing home providing care over and above that which a general nursing home might provide, they would make a contribution to the cost of her care. The authority’s criteria were not altered in light of the Coughlan judgement and as such, the ombudsman could not find that it was compatible with it. The criteria were very restrictive. The ombudsman said that it was: “Very possible (but not entirely certain) that, if appropriate criteria had been applied, Mrs Z would have qualified for fully funded care at some point.” The complaint was upheld. It was recommended that the local health authority should revise its eligibility criteria, reconsider Mrs Z’s case in the light of the revised criteria, and compensate her estate if she should have been assessed as eligible for all or part of the period in question.

Case S – Birmingham Health Authority

Mrs R, aged 90, had suffered a severe stroke, which had left her immobile, incontinent and confused. She was paralysed on her left side. The local health authority’s criteria, which had not been revised in the light of the Coughlan judgement, provided that patients would be entitled to NHS-funded continuing care when their health needs are so complex and difficult that they need skilled health-care staff to look after them around the clock. The criteria could be interpreted as meaning that a nurse had to be in attendance 24- hours a day without a break. This would have been more restrictive that the national framework. There are patients who do not need weekly reviews by a consultant or round-the-clock continual and intensive care by a skilled health-care person but whose needs for nursing care are greater than could be regarded as merely incidental or ancillary to the provision of accommodation. The ombudsman said that, if Mrs R had been assessed on proper criteria, “she might (though it is not possible to be certain) have been deemed eligible”. In fact, Mrs R had suffered no significant financial loss because she had been kept in hospital as an in-patient until six days before her death as a result of the dispute. The complaint was upheld in part.

The ombudsman’s general recommendations

The ombudsman said that strategic health authorities (StHA) and primary care trusts should review the criteria in use since 1996 to ensure they take into account government guidance, the Coughlan case and the findings of her report. In each of the four areas investigated, the health authorities concerned should attempt to identify any other patients who may wrongly have paid for care and recompense them or their estates.

Although there have been changes in the structure of local health authorities since 1996, the current authorities should review the criteria of their predecessor bodies and take action accordingly. Practitioners in the areas covered in the special report should review their cases and, if appropriate, make representations to their StHA. In the case of practitioners outside the areas covered, they may consider the criteria used and, if necessary, ask for a review and challenge the criteria itself. To check on the appropriate StHA look to www.doh.gov.uk/shiftingthebalance.

The ombudsman also recommends that the Department of Health should provide clearer guidance, as current wording has contributed to the problems. Revised guidance may need to include detailed definitions of terms used and examples of cases likely to satisfy the criteria for funding. The Department should consider how it could support health authorities in carrying out the ombudsman’s recommendations, and possibly to co-ordinate efforts to remedy any financial injustice and be more proactive in checking that local criteria used in the future follow its guidance.

The Department should also consider how to link the assessment of eligibility for continuing NHS health care into the single assessment process for establishing contributions towards nursing care under the system introduced in 2001, and should consider whether it should provide further support for the development of reliable assessment methods. This has been incorporated in part in Paragraph 18 of the supplementary guidance on NHS-funded nursing care (LAC (2003) 7), which specifically states: “Regardless of the eventual setting in which an individual is likely to be cared for, in carrying out a joint assessment of an individual’s needs, the first consideration should always be the extent to which that person meets, or does not meet, the criteria for NHS continuing health care.” There has also been a commitment made to issue directions to the NHS that will make it clear that every patient should be assessed against local criteria for fully funded NHS continuing care, that a record be made of that assessment, and that patients should be fully informed about these criteria and the fact they can request a review (House of Lord 17 March col 15).

It is difficult to determine at what point someone’s care needs are the responsibility of the NHS. It could be argued that residents in nursing homes should have the full cost of their care met by the NHS as they are there because their care needs are primarily related to health. It is perhaps more about the quantity of time spent on the resident and the skills involved. Using case examples may help practitioners come to a conclusion as to whether a particular client should receive NHS-funded care. The special report has highlighted that many authorities are working to flawed criteria and, as a result, clients may be paying for care fees in circumstances where they may qualify for free NHS-funded care. The current situation is not the sole responsibility of the StHAs but the Department of Health, which has a large part to play in making the situation clearer with co-ordinated guidance and without overlap in terminology.

Each case, however, depends on its own particular circumstances, and it does not follow from these cases that all victims of strokes or dementia will be eligible for continuing NHS health-care funding. As Ann Abraham said so clearly in her report: “The long-awaited 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 have criticised some authorities for having criteria that were out of line with guidance: except in extreme cases I fear that I would find it even harder now to judge whether criteria were out of line with the current guidance. Such an opaque system cannot be fair.”

Caroline Bielanska is a solicitor, TEP and freelance consultant. She can be contacted at: caroline.bielanska@ntlworld.com.