Report
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Issues arising from complaints
Developing eligibility criteria in line with the 1995 guidance
Taking the Coughlan judgment into account
The national framework for NHS-funded care
Conclusion and recommendations
Introduction
1. I know that arrangements for funding longer term care (also known as continuing care), particularly for dependent elderly people, are of general public concern. In the last 18 months my office has received and begun considering 13 complaints about NHS funding for such care, to add to three already under investigation at the start of that period. Many of the newer complaints have also raised concerns which required investigation. While each complaint is different, many raise similar issues. A pattern is emerging from the complaints I have seen of NHS bodies struggling, and sometimes failing, to conform to the law and central guidance on this issue, resulting in actual or potential injustice arising to frail elderly people and their relatives. Therefore I think it is important for me to report on the issues arising from these complaints as soon as possible, even though several of the investigations are not yet complete. The indications are that problems may be widespread. My hope is that action will be taken to remedy the situation, not just in respect of complaints I have received and upheld, but more widely. This report includes the full text of the reports of the first four completed investigations. Nothing in this report should be read as implying that I have pre-judged the outcome of others: as always each complaint will be considered on its own merits.
2. The people who have complained to me are not only concerned about what they see as the unfairness of the system for funding care, but about substantial financial injustice when it was applied to them. This arises because, if the NHS fully funds continuing care in a care home, the patient does not have to make any contribution to the cost of that care. If not, the patient funds much of the care him or herself; or it is funded by local authority social services departments, with patients being expected to contribute according to their means. That can mean some patients having to use virtually all their accumulated life savings and capital from the sale of their home, to pay for care: whereas other patients who are judged eligible for full NHS funding for care in a care home make no financial contribution at all, regardless of their means. It is not surprising therefore that the decisions made by NHS organisations about eligibility for NHS funding arouse strong feelings.
Legal and policy framework
3. The issue is not a new one for this office. Sir William Reid published reports on similar cases in 1994 and 1996 (HC 197 and HC 504). The first of those reports was titled 'Failure to provide long term NHS care for a brain-damaged patient' and referred to what is often known as the Leeds case. Following that, in February 1995, the Department of Health issued new guidance (HSG (95) 8) on NHS responsibilities for meeting continuing care needs, setting out a national framework within which health authorities were to develop their own eligibility criteria for continuing care. Sir William Reid's report (titled 'Investigations of complaints about long term NHS care') published in 1996 related to complaints that had arisen before then.
4. The Department of Health's 1995 guidance said that the NHS was responsible for arranging and funding in-patient continuing care, on a short or long term basis, for people:
'.. where the complexity or intensity of their medical, nursing care or other care or the need for frequent not easily predictable interventions requires the regular (in the majority of cases this might be weekly or more frequent) supervision of a consultant, specialist nurse or other NHS member of the multidisciplinary team ..
'.. who require routinely the use of specialist health care equipment or treatments which require the supervision of specialist NHS staff ..
'who have a rapidly degenerating or unstable condition which means that they will require specialist medical or nursing supervision.'
The in-patient care might be provided in a hospital or in a nursing home.
5. The Department issued further guidance (EL(96)8), in February 1996. That referred to the danger of eligibility criteria being over-restrictive and mentioned the risk of an over-reliance on the needs of a patient for specialist medical opinion when determining eligibility for continuing care. It said that there would be a limited number of cases where the complexity or intensity of nursing or other clinical needs might mean that a patient was eligible for continuing care even though they no longer required medical supervision.
;6. In March 1999 a Royal Commission on Long Term Care reported. This had looked at a range of issues connected with funding of long term care for elderly people. It identified three principles behind its approach:
- Responsibility for provision now and in the future should be shared between the state and individuals - the aim was to find a decision affordable for both and one which people could understand and accept as fair and logical;
- Any new system of state support should be fair and equitable;
- Any new system of state support should be transparent in respect of the resources underpinning it, the entitlement of individuals under it and what it left to personal responsibility.
One of the Royal Commission's main recommendations was that the costs of long term care should be divided between living costs, housing costs and personal care. Personal care should be available after assessment, according to need and paid for from general taxation: the rest should be subject to a co-payment according to means. The Commission defined personal care as the care needs, often intimate, which give rise to the major additional costs of frailty or disability associated with old age. It was to include support from skilled professionals.
7. The Government responded in July 2000. It did not accept the recommendation about personal care, but accepted an alternative proposal to make nursing care in nursing homes free to users, by providing NHS funding (see paragraph 10).
8. Meanwhile, in July 1999, the Court of Appeal had given a crucial judgment (R v. North and East Devon Health Authority ex parte Coughlan) relating to funding for continuing care. This considered the issue of whether nursing care for a chronically ill patient might lawfully be provided by a local authority as a social service (in which case the patient paid according to their means) or whether it was required by law to be provided free of charge as part of the NHS. The judgment said that whether it was unlawful to transfer responsibility for the patient's general nursing care to the local authority depended, generally, on whether the nursing services were:
(i) merely incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide and
(ii) of a nature which it could be expected that an authority whose primary responsibility is to provide social services could be expected to provide.
9. In the light of that, in August 1999, the Department of Health issued guidance (HSC 1999/180) on action required in response to the judgment. It said that health authorities should satisfy themselves that their continuing and community care policies and eligibility criteria and other relevant procedures were in line with the judgment and existing guidance. Where health authorities revised their criteria, having involved and discussed the outcome with Primary Care Groups, they should consider what action they needed to take to re-assess the eligibility of current service users against the revised criteria. The guidance said that the Government would be reviewing continuing care policy and guidance, with a view to issuing revised guidance later that same year.
10. In March 2001 the Department of Health issued a National Service Framework (NSF) for Older People. That referred to the provision of free nursing care in nursing homes, but did not include any guidance on NHS funding for the full costs of continuing care for older people.
11. New guidance on continuing care was not issued until June 2001 (HSC 2001/015): nearly two years after the 1999 guidance. It replaced the previous guidance. It referred to the Coughlan judgment, saying that eligibility criteria for NHS arranged and funded nursing services in nursing homes should cover the following situations:
- Where all the nursing service is the NHS's responsibility because someone's primary need is for health care rather than accommodation;
- Where responsibility can be shared between the NHS and the council because nursing needs in general can be the responsibility of the council but the NHS is responsible for meeting other healthcare requirements;
- Where the totality of the nursing service can be the responsibility of the local council.
The Department's guidance listed issues which health authorities had to consider when establishing eligibility criteria for what it called continuing NHS healthcare ie 'a package of care arranged and funded solely by the NHS' - I shall use that terminology from now. However it included very little guidance on how exactly the listed issues should affect eligibility (see annex for relevant extracts from the guidance).
12. The Department's June 2001 guidance looked ahead to the introduction in October 2001 of NHS funding for nursing care in nursing homes (often referred to as 'free' nursing care). This meant that from that date the NHS would fund care in nursing homes by a registered nurse (but not by other staff) for people who would otherwise be funding the full cost of their care themselves. From April 2003 NHS funding will be provided for such care for all care home residents. (In April 2002 the previous distinction between nursing and residential homes ended, and all are now known as care homes, with or without nursing care.) A circular and practice guide on free nursing care was issued by the Department in August 2001. The amount of nursing care required (the Registered Nurse Care Contribution - RNCC) is assessed by an NHS nurse to determine which of three bands (levels) of nursing care is needed. Each band, high medium and low, attracts a different level of NHS funding. The practice guide mentions specifically that the advent of free nursing care left responsibilities for continuing NHS healthcare (which it defined as being where service to meet the totality of the patient's care should be arranged and funded entirely by the NHS) unchanged.
13. In January 2002 the Department of Health issued a circular (HSC 2002/001) and guidance on the implementation of a single assessment process for older people, as heralded in the National Service Framework. The purpose of the process is to ensure that older people receive appropriate, effective and timely responses to their health and social care needs, and that professional resources are used effectively. The process (which is still being implemented) is designed to ensure that agencies do not duplicate each other's assessments, and should provide information to support the determination of the RNCC for residents in care homes which provide nursing care. The guidance does not suggest how, if at all, the single assessment process would contribute to assessment of eligibility for full NHS funding for care in a home. The guidance does not recommend the use of any particular assessment tool, but leaves it to bodies to develop and agree what to use locally.
Issues arising from complaints
14. The complaints I have received are about events that arose in the period 1997 to date (but mainly before October 2001), and raise several important issues. Those include:
- Informing and involving patients and their relatives
- Developing eligibility criteria for NHS-funded care in line with guidance issued in 1995
- Reviewing eligibility criteria in the light of the Coughlan judgment (July 1999)
- The national framework for NHS-funded care
- Assessment against criteria.
Involvement and information
15. Patients and relatives often complain about not being adequately involved in decisions about moving into a care home, about being given inadequate information about how decisions are reached, and the financial implications of those decisions.
16. Many patients move to care homes after a spell in hospital, for example following a stroke or a serious fall. While it is in no-one's interests for patients to remain in hospital longer than they need to, this means that there can be pressure to arrange a move quickly. Yet giving up one's own home and moving into a care home is a major event, with enormous emotional and financial implications. It is therefore essential that health and social services staff, who are involved jointly in such situations, work well together to make sure that patients and relatives have all the information and support they need to make the difficult decisions involved at such a stressful time. Too often I receive complaints of patients' and relatives' views not being taken into account in multi-disciplinary assessments, of little or no written information being provided and of criteria and procedures not being explained adequately.
17. A contributory factor in this seems to be inadequate communication between health authorities and NHS trusts. Within the NHS, primary responsibility for setting eligibility criteria rests with health authorities: but it is usually trust staff who carry out clinical assessments of patients' needs against the criteria, sometimes with little or no guidance on the practical application of the criteria. Also they are not always sufficiently well-informed to discuss the wider issues of eligibility, for instance the review procedure, with patients and relatives.
Developing eligibility criteria in line with the 1995 guidance
18. The Department of Health's 1995 guidance required, for the first time, that all health authorities developed eligibility criteria for access to NHS-funded continuing care. It laid down a broad national framework, leaving health authorities room to develop their own local criteria within that. It is not surprising then that criteria vary from authority to authority and that (as in one case published today, E.420/00-01) the same patient might be judged to be eligible by one authority but not another. Patients and their relatives find such differences hard to understand within a national health service but, without national criteria, such differences are almost inevitable and not in themselves evidence of maladministration.
19. However, some of the local criteria I have seen appeared to be significantly more restrictive than the guidance permitted. For instance: some explicitly say that only patients requiring continued consultant supervision, or on site medical expertise, are eligible for NHS-funded care: others seem to suggest that in explanatory text, or to imply that only people requiring hospital care are eligible. Yet it is quite clear from the 1995 guidance, and reinforced by the additional guidance in EL (96) 8, that some other patients should be eligible.
Taking the Coughlan judgment into account
20. The Coughlan judgment provided a valuable analysis of some legal and policy issues connected with the funding of continuing care, and set out the basis for deciding whether it was reasonable for the NHS to refuse to fund the general nursing care of a patient in a care home. The Department of Health quite properly drew the judgment to the attention of NHS bodies and asked health authorities to review and, if necessary, revise their criteria to ensure that they were in line with the judgment. They were also asked to reassess patients' eligibility for NHS-funded care where criteria had been revised.
21. However, in a number of the complaints I have seen, any review of the criteria following the judgment seems to have been very limited, and criteria remained unchanged even when it is very hard to see that they were in line with the judgment. I would have expected the Department of Health, when reviewing the performance of health authorities, to have picked this up and taken action itself. But I have seen some evidence to suggest that the Department provided little real encouragement to authorities to review their criteria, and eligibility of patients, actively. 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. The statement in the 1999 guidance, that more guidance would follow later that year, may also have encouraged some authorities to wait before taking significant action.
22. It was nearly two years from the time of the Coughlan judgment before further substantive guidance was issued, and in some health authorities little progress seems to have been made in reviewing their eligibility criteria during that period. There is a significant group of patients whose nursing care cannot be regarded as merely incidental or ancillary to the provision of accommodation which a local authority is under a duty to provide, or of a nature which a social services authority could be expected to provide. It appears to me that some health authorities were reluctant to accept their responsibilities with regard to such patients and were not being pressed by the Department of Health to do so.
23. Since October 2001 the Coughlan judgment has rather less significance as regards eligibility for NHS-funded continuing care (for people who otherwise had to pay the cost of care - including nursing care - in a care home themselves) because care provided by registered nurses is now funded by the NHS. But the impact of the judgment reaches back some way: the judgment elucidated the law as it was, it did not introduce a change in 1999. Even before then it was contrary to the law for health authorities to operate criteria which were out of line with the law, as explained in the judgment. I would not regard their choice of criteria as maladministrative between 1996 and 1999 if the criteria were in line with national guidance. However I take the view that health authorities still have a responsibility, in the light of the Coughlan judgment, to remedy injustice to patients flowing from any criteria which are now known to have been unlawful. I therefore think it only right for health authorities who have used criteria out of line with the judgment at any point since April 1996 (when it first became mandatory to have written criteria), to attempt to identify any patients who may wrongly have been made to pay for their care in a home and to make appropriate recompense to them or their estates.
24. It is impossible for me to estimate how many people might be affected and the potential total cost of making such payments: but I recognise that significant numbers of people and sums of money are likely to be involved. I also recognise that the responsibilities of the health authorities involved transferred to new strategic health authorities in October 2002. Furthermore the relevant budget will now be held by primary care trusts, not the new authorities. I can see that none of this will be easy to resolve: but that is not a reason for me to refrain from expecting a remedy for those who have suffered an injustice.
25. Prompted by a letter my predecessor sent to him on completion of the first of these investigations, in August 2002 the Chief Executive of the NHS very helpfully included in a bulletin sent to Chief Executives of Health and Social Care bodies a reference my conclusions in that case. It reminded health authorities of the need to consider whether criteria previously applied in their area were similarly at fault and whether patients were wrongly denied NHS-funded care. That was an excellent first step towards resolving the issue, but I can see that further guidance and support will be needed from the Department of Health to ensure that all strategic health authorities take comprehensive and consistent action in this regard. Otherwise I fear I may see further complaints about the way remedial action has been tackled locally.
Recommendations
26. I therefore recommend that strategic health authorities and primary care trusts should:
- the criteria used by their predecessor bodies, and the way those criteria were applied, since 1996. They will need to take into account the Coughlan judgment, guidance issued by the Department of Health and my findings;
- make efforts to remedy any consequent financial injustice to patients, where the criteria, or the way they were applied, were not clearly appropriate or fair. This will include attempting to identify any patients in their area who may wrongly have been made to pay for their care in a home and making appropriate recompense to them or their estates.
27. I also recommend that the Department of Health should:
- consider how they can support and monitor the performance of authorities and primary care trusts in this work. That might involve the Department assessing whether, from 1996 to date, criteria being used were in line with the law and guidance. Where they were not, the Department might need to co-ordinate effort to remedy any financial injustice to patients affected;
- consider being more proactive in checking that criteria used in the future follow the guidance.
The national framework for NHS-funded care
28. While I am in no doubt that the Authorities in the first four completed investigations deserve the criticisms made of them in respect of the criteria they chose to use, it is clear to me that there are more fundamental problems with the system for deciding who does or does not get their care fully funded by the NHS. As the lengthy legal and policy section of this report helps to show, the national policy has been far from simple to understand or apply for some time. A line has to be drawn between people eligible for full NHS funding and those who are not. While, as the Coughlan case illustrates, some possible policy decisions on where to draw that line would be unlawful, various policy decisions are possible within the law. Nothing in this report should be read as commenting on the national policy decision about where to draw the line, but I do comment on how the line is drawn. As the Royal Commission recognised (see paragraph 6) when referring more widely to state funding, any system must be fair and logical and should be transparent in respect of the entitlement of individuals.
29. From what I have seen, the national policy and guidance that has been in place over recent years does not pass that test. Those who complain to me find the system far from fair or logical and often cannot understand why they or a relative are not entitled to NHS funding. At times entitlement seems to have depended in part variously on ill-defined distinctions between:
- Specialist and general health care;
- Health care and social care;
- Care by registered nurses and care by others.
As the Coughlan judgment points out, basing eligibility on the need for specialist care does not cater for the situation where the demands for nursing care are continuous and intense. It can also be unclear what constitutes specialist care: for instance, does that include input from mental health nurses?
30. The distinction between health and social care (and that between care by registered nurses or by others) is a blurred one which has also shifted over time. Nurses have been trained to take on tasks which years ago would only have been carried out by doctors, and auxiliary nurses, care assistants and carers increasingly perform tasks which, in the past, would have been carried out by registered nurses. Long term carers can learn to handle tasks which would, even now, usually be carried out by nurses or other clinical staff. Some patients needing long term care need help with a wide range of basic activities: to the average patient or carer, the distinction professionals might make between health and social needs is largely irrelevant.
31. I do not underestimate the difficulty of setting fair, comprehensive and easily comprehensible criteria. The criteria have to be applied to people of all ages, with a wide range of physical, psychological and other difficulties. There are no obvious, simple, objective criteria that can be used. 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 efforts since then seem to have focused mainly on policy about free nursing care. Authorities were left to take their own legal advice about their obligations to provide continuing NHS healthcare in the light of the Coughlan judgment. I have seen some of the advice provided, which was, perhaps inevitably, quite defensive in nature. The long awaited further guidance in June 2001 (see paragraph 11 and Annex) gives no clearer definition than previously of when continuing NHS healthcare 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 which were out of line with previous guidance: except in extreme cases 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.
Recommendation
32. The Department of Health should review the national guidance on eligibility for continuing NHS healthcare, 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.
Assessing against criteria
33. Given the freedom to decide their own eligibility criteria within the loose national framework, health authorities have adopted a range of approaches, both to the criteria themselves and to procedures and guidance underlying them. Looking at most of the sets of criteria we have seen, it is fairly easy to identify a group of people who would definitely not be eligible for funding, and a very small group of people who definitely would be eligible (many of whom would not be well enough to leave hospital). But there is a large number of people in the group in between. Now and in the past, a line has to be drawn through that group, and this is done using generally quite subjective and broadly drafted criteria. Yet which side of the line a patient's needs are judged to fall can make an enormous financial difference to the patient and their family.
34. Some authorities have attempted to address this problem by producing detailed guidance and procedures on the assessment of patients and the application of their criteria. Some use specific assessment 'tools'. Where the guidance and procedures are well-drafted and properly promulgated and understood by all those doing assessments, that can at least assure some degree of consistency in the application of the criteria within the authority's area. But unless they are published alongside the criteria themselves, patients and carers can be left inadequately informed as to how decisions about eligibility are actually being made.
35. Other health authorities have little or no practical guidance about the application of the criteria, and it is left to clinical staff in the community or hospitals to interpret them as best they can when assessing patients. This will almost inevitably lead to inconsistency.
36. The Department of Health does not appear to have provided any significant help to NHS bodies on methods and tools for assessing against eligibility criteria for continuing NHS healthcare. Although the Department is in the process of introducing a 'single assessment process' for older people, the associated guidance does not suggest whether or how this could provide a basis for, or contribute to, the assessment of eligibility for continuing NHS healthcare.
Recommendation
37. The Department of Health should consider how to link assessment of eligibility for continuing NHS healthcare into the single assessment process and whether it should provide further support to the development of reliable assessment methods.
Conclusion and recommendations
38. The findings in the cases reported today and the themes emerging from those still under investigation lead me to conclude that:
- The Department of Health's guidance and support to date has not provided the secure foundation needed to enable a fair and transparent system of eligibility for funding for long term care to be operated across the country;
- What guidance there is has been mis-interpreted and mis-applied by some health authorities when developing and reviewing their own eligibility criteria;
- Further problems have arisen in the application of local criteria to individuals;
- The effect has been to cause injustice and hardship to some people.
39. I therefore recommend that strategic health authorities and primary care trusts should:
- review the criteria used by their predecessor bodies, and the way those criteria were applied, since 1996. They will need to take into account the Coughlan judgment, guidance issued by the Department of Health and my findings;
- make efforts to remedy any consequent financial injustice to patients, where the criteria, or the way they were applied, were not clearly appropriate or fair. This will include attempting to identify any patients in their area who may wrongly have been made to pay for their care in a home and making appropriate recompense to them or their estates.
40. I also recommend that the Department of Health should:
- consider how they can support and monitor the performance of authorities and primary care trusts in this work. That might involve the Department assessing whether, from 1996 to date, criteria being used were in line with the law and guidance. Where they were not, the Department might need to co-ordinate effort to remedy any financial injustice to patients affected;
- review the national guidance on eligibility for continuing NHS healthcare, 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;
- consider being more proactive in checking that criteria used in the future follow that guidance;
- consider how to link assessment of eligibility for continuing NHS healthcare into the single assessment process and whether the Department should provide further support to the development of reliable assessment methods.
