People with a continuing primary health need should in principle qualify for what is called ‘NHS continuing health care’. This enables them to receive NHS services in hospital, a care home, a hospice or in their own home. Apart from benefiting from the services themselves, there can be very substantial financial advantages for service users. For example, if the person is in a care home providing nursing, the NHS is responsible for funding, free of charge, the accommodation, board, personal care and nursing care. This would compare to a nursing home resident who was deemed not to be in need of NHS continuing health care; he or she would receive only a certain amount of nursing care free of charge. The rest would be subject to a local authority means test that could result in the resident paying and having to sell his or her house. Similarly if a person is at home, then the NHS is responsible for funding not just the health care, but the personal care required as well, in which case the person would not be paying the local authority for the letter.

This situation has led to a great sense of injustice and unfairness amongst many older people and their families who understood that, having worked all their lives and paid tax and national insurance, that the National Health Service would look after them in their hour, literally, of greatest need and vulnerability.

Department of Health guidance about NHS continuing health care has been unclear and difficult to understand for some two decades. The health service ombudsman repeatedly, as well as the courts on occasion, has pointed this out forcibly. Equally persistently, the Department of Health has failed properly to sort the problem out. It has arguably fostered and encouraged not only uncertainty but evasion of legal obligations.

In 2007, the Department issued further procedural directions about continuing care assessments, a national framework, a ‘decision support tool’, and a ‘needs checklist’. Notwithstanding this glut, early indicators are that legal questions and doubts remain – given, for example that some NHS primary care trusts are continuing to query whether a person has health care needs even if they are a mere few days from death.

18.1 NHS CONTINUING HEALTH CARE: BACKGROUND

In order to understand the present position, the background needs first to be outlined. The whole issue is also symptomatic of just how difficult it is to establish what the NHS is or isn’t obliged to do, and how evasive and ambivalent central government has been when it comes to clear commitment to care for needy, older people with complex and expensive needs.

By the beginning of the 1990s, unease had been growing about the degree to which the NHS had surreptitiously been shedding long-stay beds. In 1994, it came as little surprise that the health service ombudsman should publish a hard-hitting report on the non-provision of NHS continuing health care by Leeds Health Authority:

Failure to provide NHS care for people with neurological conditions. A health authority had decided not to provide directly, or pay for elsewhere (e.g.a nursing home), continuing care for people with neurological conditions: the health authority neuro-surgical contract did not refer to institutional care at all. The person discharged was doubly incontinent, could not eat or drink without assistance, could not communicate, had a kidney tumour, cataracts in both eyes and occasional epileptic fits. There was no dispute that when he was discharged he did not need active medical treatment but did need ‘substantial nursing care’. The health authority defended its position with reference to resources, priorities and national policy (which was being followed by other health authorities).

The health service ombudsman found a failure in service. He cited s.3 of the NHS Act 1977 at the beginning of the report, including s.3(l)(e) which refers to ‘aftercare’. His findings read: ‘This patient was a highly dependent patient in hospital under a contract made with the Infirmary by Leeds Health Authority; and yet, when he no longer needed care in an acute ward but manifestly still needed what the National Health Service is there to provide, they regarded themselves as having no scope for continuing to discharge their responsibilities to him because their policy was to make no provision for continuing care. The policy also had the effect of excluding an option whereby he might have the cost of his continuing care met by the NHS. In my opinion the failure to make available long-term care within the NHS for this patient was unreasonable and constitutes a failure in the service provided by the Health Authority. I uphold the complaint.’

The ombudsman recommended that the health authority reimburse nursing home costs already incurred by the man’s wife and meet future costs; and also that it should review its ‘provision of services for the likes of this man in view of the apparent gap in service available for this particular group of patients’ (Leeds HA 1994).

In the wake of the Leeds case the following sequence has unfolded:

•1995: Department of Health guidance. In 1995, largely in response to the Leeds investigation, the Department of Health published specific guidance on continuing care in 1995 (HSG(95)8).

•1995-6: more ombudsman investigations. By 1995 and 1996 the health service ombudsman was publishing further reports of highly restrictive policies being operated by health authorities – such as not contracting for continuing care nursing home beds, even though the authority’s hospital beds were inadequate to meet continuing care needs (North Worcestershire HA 1995), simply not funding continuing care beds either in hospitals or nursing homes (Avon HA 1996), not informing patients and their families about continuing care (East Kent HA 1996), quite improperly making even partial continuing care funding dependent on whether the patient received income support (North Cheshire HA 1996), or prejudging people’s continuing care status and simply not telling them about it (Buckinghamshire HA 1996).

•1999: Coughlan judgment. In 1999, the Court of Appeal criticised the Department of Health’s 1995 guidance, finding aspects of it both elusive and unclear. The court stated that the local authority should be responsible for nursing services in a care home, only if they were incidental or ancillary to the provision of the accommodation, or of a nature ‘which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide’. Any other nursing care the NHS would be responsible for; in turn this would mean that a resident requiring such nursing care would be deemed to have NHS continuing health care status (R v North and East Devon Health Authority, ex p Coughlan).

•1999: interim guidance and inaction. In response to the Coughlan judgment, the Department of Health issued interim guidance in August 1999 (HSC 1999/180), stating that it would issue final guidance later in 1999; as a consequence the NHS and local authorities appeared to do little pending the imminent guidance. Unfortunately, it was almost a two-year wait before the guidance was issued. The health service ombudsman has since found evidence that during this time the Department of Health did little to encourage the NHS to review its practices; one letter sent out by a regional office of the Department could justifiably have been interpreted as a ‘mandate to do the bare minimum’ (HSO 2003c, para 21). At one meeting with such a regional office, a health authority was told to ‘duck and dive’ for a while (Suffolk HA 2003).

•2001: guidance. In 2001, in belated response to the Coughlan case, the Department of Health finally issued revised continuing care guidance (HSC 2001/15). Also in 2001, the Department of Health introduced what it termed ‘free nursing care’ and, in so doing, added an additional variable to the continuing care equation (not present at the time of the Coughlan case).

•2001: NHS plan. The government published, under the umbrella of its NHS Plan, its response to its own Royal Commission on Long Term Care. The response was totally silent about the issue of NHS continuing health care status (Secretary of State for Health 2000a).

•2003: highly critical ombudsman report. In 2003, the health service ombudsman published a special report on continuing care matters, this time severely criticising the 2001 guidance and the Department of Health’s policy on continuing care. She found that the 2001 guidance was not only as unclear as the 1995 guidance (itself criticised by the Court of Appeal), but in fact was ‘weaker’. This meant it would be even harder to judge under the 2001 guidance whether local NHS criteria were in line with the national guidance. She stated that any system should be ‘fair and logical and should be transparent in respect of the entitlement of individuals’. Yet from what she had seen, ‘the national policy and guidance that has been in place over recent years does not pass that test’ (HSO 2003c, paras 28, 31). The ombudsman also recommended reimbursement of nursing home fees to all those service users who had as far back as 1996 themselves paid – when the NHS should have (HSO 2003 c, para 39). The Department of Health instructed the NHS to comply with this recommendation by conducting retrospective reviews.

•2004: ombudsman report on person with Alzheimer’s disease in own home. In 2004, the health service ombudsman published a further special report on continuing care, this time concerning a man with advanced Alzheimer’s disease in his own home (Cambridgeshire HA 2004).

•2004: directions. In 2004, the Department of Health passed two sets of directions in respect of continuing care concerning assessment, the application of eligibility criteria and reviews (see immediately below).

•2004: further ombudsman report. In December 2004, the health service ombudsman issued yet another report (HSO 2004b), pointing to the continuing difficulties, casting doubt on the process of retrospective reviews and reimbursement (see 2003 report above), and making the following recommendations for action to be taken by the Department of Health in respect of:

(a) the establishment of clear, national minimum eligibility criteria which are understandable by health professionals, patients and carers

(b) the development of a set of accredited assessment tools and good practice guidance to support the criteria

(c) supporting training and development to expand local capacity and thus ensure that continuing care cases are assessed and decided properly and promptly

(d) clarification of standards for record keeping and documentation

(e) seeking assurance that the retrospective reviews have covered all those who might be affected

(f) monitoring the progress of retrospective reviews.

•2004: Department of Health report. A report commissioned by the Department of Health was published in December 2004, making a number of findings similar to that of the health service ombudsman’s report of December 2004 (Henwood 2004).

•2004: Department of Health undertaking to publish further guidance. In December 2004, a government minister (Stephen Ladyman) announced that he would commission a ‘new national framework’ on continuing care, although he still maintained (despite the health service ombudsman’s withering criticisms) that the existing criteria were ‘fair and legal’ (DH 2004g).

•2005: The House of Commons Health Committee reported that the system was ‘beset with complexity’, had been contentious for over a decade, was a postcode lottery, and that the system should have built in incentives to promote rehabilitation and independence (HCHC 2005, p.3).

•2006: Grogan judgment. The High Court found that the NHS in the Bexley area was applying Department of Health guidance in such a way that was unlawful, because it was not asking the right legal questions as set out in the Coughlan judgment back in 1999. Furthermore, although the case was not brought against the Department of Health, the judge subjected the latter’s guidance to serious criticism (R(Grogan) v Bexley NHS Care Trust).

•2006: BBC Panorama programmes. The BBC broadcast two Panorama programmes, entitled The National Homes Scandal. The reason for running two programmes within months of each other was because of the unprecedented level of public response to the first (BBC 2006).

•2007: Health Service Ombudsman criticises the Department of Health guidance on restitution (HSO 2007).

•2007: Department of Health reissues guidance on restitution (DH 2007m).

•2007: Department of Health’s new guidance comes into force in October 2007. Nearly three years after the commitment to new guidance given in December 2004, a new ‘national framework’ was implemented in October 2007, together with a ‘decision support tool’, a ‘checklist’ (for screening purposes), and a ‘fast-track pathway tool’. It was underpinned by three sets of directions, imposing various obligations on the NHS (see below).

•2008: tens of millions of pounds repaid. Department of Health confirms that over £180 million was repaid to thousands of elderly people who had wrongly been charged for what should have been free, NHS continuing health care. The final amount was reported as possibly exceeding £200 million, with the average restitution amounting to some £90,000 per person (Womack 2008).

In sum, right up to the bringing into force of new guidance and directions in October 2007, the Department of Health had, for well over a decade, maintained that there was nothing wrong with its guidance, despite the criticism that rained in from all quarters. Nonetheless, it did concede that it expected the new rules to mean that some 5000-10,000 people, previously deemed ineligible, to be eligible (CSCI 2008, p. 13). Yet reports in early 2008 showed that numbers began to drop in a significant number of NHS primary care trust (PCT) areas, especially in the case of people with a terminal illness (Gainsbury 2008). It is also possible that some of the guidance produced by the Department of Health, particularly its ‘decision support tool’ (see below) was inconsistent with the legal position and would provoke a rash of new challenges to NHS decisions on continuing care. Such uncertainties are unsurprising in the light of the highly restrictive and wildly varying policies applied by PCTs. If Department of Health statistics for 2005/6 are to be believed, a person might at an extreme have been 1000 times more likely to have been given continuing health care status in one PCT rather than another. Even allowing for such statistical outliers to be suspect, the statistics still showed huge discrepancies across some 300 PCTs (DH 2007n).

18.1.1 REIMBURSEMENT OF MONEY TO PEOPLE WRONGLY CHARGED FOR CARE

Following the health service ombudsman’s report of 2003 (HSO 2003c), the Department of Health had instructed strategic health authorities to conduct reviews of people who might have wrongly been charged for care, which should have been free as NHS continuing health care. Such reviews should have been directed not just at past nursing home placements, but also at situations where people at home might have been paying for services that should have been free from the NHS (see e.g. Cambridgeshire HA 2004).

The outcome of these reviews was that a great deal of money was repaid; although the health service ombudsman has since criticised the speed of the efforts being made (HSO 2004, p.13). Further criticism by the health service ombudsman at the end of 2004 pointed out that:

•The Department of Health had assured the ombudsman that retrospective reviews of cases would be finished by December 2003, but it was now clear that the backlog might not be dealt with even by the end of 2004.

•The Department of Health had not collected central statistics relating to retrospective reviews since July 2004 and had no plans to do so.

•In more than 50 per cent of review cases examined by the ombudsman, the assessments had not been carried out properly due to a lack of consistency of approach, variable quality of assessments, confused and inconsistent panel procedures (e.g. some lacked clinical or professional input), failure to record reasons for decisions, and poor communication with patients and relatives. There had also been delays in the payment of restitution following retrospective reviews.

•In the absence of support and leadership from the Department of Health and some strategic health authorities, the ombudsman’s office was regularly receiving requests for advice, interpretation of the guidance and even training. However, it was for the Department of Health to clarify procedures, which it had itself initiated, rather than for the ombudsman to do so (HSO 2004b, Summary and paras 5, 29, 32).

The scale of the problem of retrospective review and reimbursement was indicated by the number of reviews involved (nearly 12,000), the number of complaints made to the health service ombudsman (reported in December 2004 as numbering 4000 since February 2003), and the amount of money allocated by the Department of Health for restitution (£180 million). The ombudsman pointed out that she could not say with certainty whether all strategic health authorities had made extensive and comprehensive efforts to locate patients (and their relatives) eligible for retrospective review (HSO 2004b, paras 5, 40, 12). Finally, in July 2007, ahead of the implementation of the new national framework on continuing care in October 2007, the Department of Health signalled an end to the review process – subject to exceptional cases – on 30 November 2007 (Nicholson 2007).

In the meantime the Parliamentary and health service ombudsman (that is the same person exercising both roles) had found fault with the guidance issued by the Department of Health on how primary care trusts should decide on recompense to be paid. The guidance had stated that such restitution would only apply to monies paid out in care home fees, but not to other circumstances such as premature sale of a property, or inconvenience or distress that individuals had suffered in making unnecessarily difficult decisions about how to fund care. The guidance had resulted in a PCT refusing to make financial recompense for the sale of a person’s property to fund care. This maladministration had resulted in inconsistency of payments (HSO 2007).

18.2 NHS CONTINUING HEALTH CARE DIRECTIONS ON PROCEDURAL ASPECTS

In 2007, the Department of Health passed two sets of directions in respect of continuing care, which impose specific duties on the NHS. Although procedural only, they nevertheless could be the basis for challenging decisions made by PCTs. An additional set of directions was made in relation to ‘free nursing care’, that is, the registered nursing care component payable for people in nursing homes – in contrast to NHS continuing health care (see 17.9).

18.2.1 DELAYED DISCHARGES (CONTINUING CARE) DIRECTIONS 2007

One set, in respect of delayed patient discharges from hospital, stipulates that before the NHS gives notice to a social services authority to assess a person in relation to hospital discharge (under the Community Care (Delayed Discharges) Act 2003), it must take reasonable steps to ensure that an NHS continuing care assessment is carried out. This is where it appears to the NHS body – in consultation, where it considers this appropriate, with the local social services authority – that the patient may have a need for such care. The NHS body:

•(consultation with patient) must consult with the patient and, where it considers it appropriate, the patient’s carer

•(screening) must use the ‘needs checklist’ for screening purposes (if it wishes to use an initial screening process), in order to decide whether to undertake an assessment for NHS continuing health care, inform the person about the decision as to whether to carry out an assessment of his or her NHS continuing health care needs, and make a record of the decision in the patient’s notes

•(multi-disciplinary assessment) must ensure that a multi-disciplinary assessment is used to inform the decision about eligibility for NHS continuing health care

•(decision support tool) must ensure that the ‘decision support tool’ is completed and used to inform the decision as to whether a person has a primary health need

•(primary health need) must, in deciding about a primary health need, consider whether – if the person is going into a care home – his or her needs are more than incidental or ancillary to the provision of the accommodation, or are of a nature beyond that which a social services authority, whose primary responsibility is to provide social services, could be expected to provide. If either of these conditions is satisfied, then the NHS body must determine that the person has a primary health need

•(notification to patient) must, where an NHS continuing health care assessment has been carried, notify in writing the person assessed and make a record of the decision in the person’s notes

•(review of decision) must, where the decision is that the person is ineligible, inform the person (or somebody acting on his or her behalf) that he or she can apply for a review in connection with either the procedure followed by the NHS body in reaching the decision about eligibility, or the application of the criterion (i.e. primary health need) of eligibility (DH 2007o).

18.2.2 NHS CONTINUING HEALTHCARE (RESPONSIBILITIES) DIRECTIONS 2007

The second set of directions sets out the responsibilities of NHS primary care trusts (PCTs), strategic health authorities (SHAs) and local social services authorities. They state that:

•(PCT to ensure assessment) a PCT must take reasonable steps to ensure that an NHS continuing care assessment is carried out. This is where it appears to the NHS body (in consultation, where it considers this appropriate, with social services) that the patient may have a need for such care or for a variation in the provision of such care. This must be before an assessment is carried about a person’s need for nursing care in residential accommodation under the NHS

•(screening) the PCT must use the ‘needs checklist’ for screening purposes (if it wishes to use an initial screening process), in order to decide whether to undertake an assessment for NHS continuing health care, inform the person about the decision as to whether to carry out an assessment of his or her NHS continuing health care needs, and make a record of the decision in the patient’s notes

•(multi-disciplinary assessment)

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