Reviewing and revising eligibility criteria
NHS funding for long term care: follow up report
Reviewing and revising eligibility criteria
- Comprehensive needs assessment and location of care
- Setting of care: residential home
- Application of criteria
- Poor process and delay
- NHS funded continuing care vs. free nursing care
14. Our February 2003 report recommended 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' (paragraphs 26 and 39). The report also recommended that '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' (paragraphs 32 and 40).
15. In response to the first of these recommendations, the Department of Health asked all strategic health authorities to review whether continuing care criteria in use in their area since 1996 were consistent with the Coughlan judgment. This was a landmark judgment in continuing care (R v. North and East Devon Health Authority ex-parte Pamela Coughlan, July 1999). It considered 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 would pay according to their means) or whether it should be provided free of charge by the NHS. This depended on whether the nursing services were merely incidental or ancillary to the provision of accommodation that a local authority has a duty to provide and of a nature that an authority whose primary responsibility is to provide social services could be expected to provide. The overriding test is whether the person's need is primarily a health care or a social care need, although the Coughlan judgment did not draw a hard and fast line between the two.
16. In response to our second recommendation the Department of Health, instead of updating its own national guidance, required authorities to complete the integration of their continuing care criteria into a single set of criteria applicable across each strategic health authority area and legally compliant with the Coughlan judgment. Our report in February 2003 observed that national guidance issued post-Coughlan in June 2001 (Continuing Care: NHS and local councils' responsibilities - HSC 2001/015, LAC(2001)28) did not clearly define when continuing NHS health care should be provided - hence our recommendation that this should be reviewed at a national level.
17. All strategic health authorities have now reviewed their criteria and have developed revised, integrated criteria. We recognise that this was a difficult task. Authorities were inheriting variable approaches and attempting to integrate several often-diverging sets of criteria from the former health authorities. It was also a task undertaken in parallel with carrying out the retrospective reviews and in some cases proved to be a factor in the delays. Individual strategic health authorities have expended considerable effort on this task and we are concerned that much good practice that could be shared more widely might have been overlooked.
18. It is clear that the process of reviewing eligibility criteria and carrying out retrospective reviews has helped to raise the profile, and increase the understanding, of continuing care. The Department of Health's independent review of nine strategic health authorities confirms that there is now greater acknowledgement that it is a patient's overall health care needs that should determine eligibility for continuing care funding, that those needs may change over time and that care can be provided in a range of settings, not just in an NHS hospital. In particular, it is the complexity or intensity or unpredictability of the presenting needs that determine eligibility and not the condition itself. Some of these principles were reinforced by the case of Mr Pointon (see below).
Mrs Pointon complained to the Ombudsman that her husband, who suffers from severe dementia, had been wrongly refused NHS funding for respite care. Mrs Pointon subsequently waived her anonymity to talk to the press and the Alzheimer's Society. We upheld Mrs Pointon's complaint, as the former Cambridgeshire Health Authority's assessments concentrated solely on Mr Pointon's physical, and not his psychological, needs. Neither did they take account of the care provided by Mrs Pointon at home. We made a general recommendation that eligibility criteria for funding at home should be clearly defined and that assessments should include recognition of patients' psychological as well as physical needs. Before we issued our report, the primary care trust agreed to fund the whole of Mr Pointon's care at home.
This case raised important issues around eligibility and assessment. However, our recommendations did not extend, as some commentators have maintained, to providing continuing care funding to all those who suffer from dementia. It is the healthcare needs, not the diagnosis, that determine whether the criteria for funding are met.
Mrs H, who had Alzheimer's disease, a pulmonary embolism, a chest infection and frequently wandered, was placed from hospital in a residential home for the elderly, mentally infirm in April 2002. Her son, Mr H, requested funding following the Ombudsman's special report in February 2003. The trust sent Mr H a letter in September 2003 telling him that they would conduct a retrospective review, saying:
"We will be gathering the information necessary about your relative's health and abilities at the time of admission to the residential home as part of that review".
Assessments were carried out in December 2003, and in January 2004, Mr H was told that the trust had concluded that his mother was not eligible for funding. The rationale for this was that she was in a residential home. We asked the trust to clarify the basis of their decision and a further response was sent, setting out other reasons for refusal, but identifying Mrs H's placement in a residential home as the significant factor in refusing funding.
Once again we told the trust that the place of care was not relevant, and suggested that, in line with DoH guidance, a full and proper review of Mrs H's health care needs should be carried out, particularly as there had been no discharge assessments when she had left hospital, and it was unclear whether original contemporaneous hospital, GP and residential home records had been gathered and considered. In our dealings with the trust we also acknowledged that our clinical advisers were of the opinion that, from the papers they had seen, it was unlikely that Mrs H had unpredictable, complex or intense health care needs.
Finally we asked the trust to confirm that no other requests for funding on behalf of people in residential homes had been screened out of the retrospective review process. Each case should merit a full assessment of their health care needs.
19. Despite some welcome rationalisation and clarification, we have found a continuing lack of clarity around the interpretation of words such as 'unpredictability', 'complexity' and 'intensity', causing difficulties for health care professionals as well as for patients, carers and relatives. There are also multiple sets of eligibility criteria across the country and complainants question why this should be so in a national health service. As the independent review has identified, many of the local criteria in place in different strategic health authorities appear to be similarly worded. But there are strategic health authorities where the content and interpretation of their criteria differs significantly from those of others. The result has been that some cases have been assessed using what appear to be overly-restrictive or poorly applied criteria. In the absence of national criteria, a degree of variation in the wording of local criteria may be acceptable in order to explain or interpret Departmental guidance, but this flexibility cannot be used to restrict that guidance. The addition of words such as 'specialist' restricts the guidance rather than interpreting it. We have written to a number of strategic health authorities expressing our concerns and have also raised the matter with the Department.
Mrs F was resident in a nursing home from August 1998 to October 2003, when she died. She was initially self-funded and later social services means tested. Due to her mental and physical deterioration, her funding was shared equally by the NHS and social services from July 2002.
Our examination of the complaint raised two key issues. First, that assessment of non-entitlement to NHS funding was based on inadequate clinical evidence; secondly, that funding was denied due to an emphasis on the requirement for 'specialist' intervention, a word which appears in the strategic health authority's eligibility criteria. We had concerns about the strategic health authority's insistence on the need for specialist intervention (which DoH's guidance did not require) in order for a patient to be considered eligible for funding. We asked the strategic health authority to carry out another review, taking into account DoH guidance and our concerns about criteria which include specialist intervention.
20. We cannot make a definitive judgment about whether an individual authority's new criteria are lawful or otherwise; that is for the courts. We can only investigate if maladministration has been alleged, either in individual cases or because of systemic faults. However, judging by what we have seen from some of the complaints we have received about the retrospective reviews, some NHS bodies have still failed to establish or maintain a logical, fair and transparent system for making decisions about continuing care funding retrospectively. In these circumstances, we are concerned that scope may still exist for some patients to be disadvantaged.
Mr A cared for his wife, who had suffered from multiple sclerosis since 1982, at home until September 2001, when Mrs A moved to a residential home. At the request of the matron, in April 2002 Mrs A was transferred to a nursing home as her condition was deteriorating and her needs could not be met at the residential home. By this time, in addition to multiple sclerosis, Mrs A was diagnosed with epilepsy, anaemia, contractures and fractures of her left arm and leg due to falls, and frequent urinary tract infections which made her confused and agitated.
In January 2004, the trust assessed Mrs A as being eligible for high band RNCC funding, but there was no evidence or rationale presented as to why Mrs A did not qualify for continuing care funding.
Mr A complained to the Ombudsman about the decision not to fund, and the fact that it had taken the trust nine months to provide him with a copy of the eligibility criteria on which the decision had been made.
One of our clinical advisers said:
"Due process in cases where there is high level and borderline need such as this warrants the presentation of underpinning clinical evidence to support any decision of the PCT in declining to fund Mrs A."
The assessment of the health care needs as presented from the papers received by our adviser was that "..Mrs A's health status is complex, unstable and unpredictable, in relationship to management of her epilepsy, renal function, dietary intake, swallow reflex, and behaviour should she develop a urinary tract infection".
We also learned at this time that Mr A had been diagnosed with cancer, and that his daughter would take over the complaint. The trust undertook to re-review the case in June 2004.
The review did not take place until 22 October and the decision to refuse funding remained unchanged. Furthermore Mr A's daughter was told that neither she, not her father was entitled to be present at the review panel meeting.
Mr A's daughter complained again to the Ombudsman. Our investigation is continuing.
21. We have also found continuing misconceptions about the distinction between NHS funded continuing care and 'free' nursing care. Registered Nursing Care Contribution (RNCC - also know as 'free' nursing care) funding was introduced in October 2001 to fund care in nursing homes by a registered nurse for people who would otherwise fund the full cost of their care themselves. It was extended in April 2003 to all care home residents (Guidance on NHS funded nursing care - HSC2003/006, LAC(2003)7). There are three levels (bands) of nursing care, high, medium and low, each of which attracts a different level of NHS funding, following an assessment by an NHS nurse. Department of Health Guidance accompanying the introduction of RNCC attempted to make it clear that responsibilities for providing continuing NHS health care (defined as where the totality of a patient's care should be arranged and funded by the NHS) were unchanged.
22. However, some NHS bodies appear to regard entitlement for NHS continuing care funding as simply a 'top band' above the higher band of RNCC funding. This may mean that they are not considering the totality of a patient's healthcare needs before assessing eligibility for RNCC funding. This is borne out by the fact that, in many instances, we have found only nursing assessments considered in retrospective reviews and not comprehensive, multi-disciplinary continuing care funding assessments that cover health care needs falling outside the scope of Registered Nurses to provide. The wording of guidance relating to healthcare needs at the highest band of RNCC funding is very similar to the Department of Health's guidance as to who might be eligible for NHS funding, which may be contributing to the uncertainty at local level.
23. There are therefore a number of areas of uncertainty that need to be addressed in order that a level playing field exists across the country. This leads us to believe there is a compelling case for introducing consistent clear national, minimum criteria for determining eligibility for continuing care funding. This is reinforced by the independent review commissioned by the Department of Health, which showed that all nine strategic health authorities reviewed were in favour of national criteria. As our report said in February 2003:
'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' (paragraph 31).
24. We recommend the establishment of clear, national minimum eligibility criteria which are understandable to health professionals and patients and carers alike.