The right tools for the job?

In general, frail elderly people in need of community-care support services, either fund their care needs themselves or turn to their social services department for assistance. Social services support is means tested and in practice provided to persons on a low income and with capital under £21,500. In certain situations however, the state responsibility for providing such assistance passes to the National Health Service (NHS). This situation occurs when a person’s needs for nursing and other care support are deemed to be above a level that can be provided by social services. Such persons are described as qualifying for ‘NHS Continuing Care’ support.
Qualifying for such support brings with it many benefits, most importantly that it is free at the point of need – available to millionaire and pauper alike. With the average cost of a nursing home place being about £30,000 per annum and considerably more in the south east, if the person entitled to such support is in need of nursing-home care, then this can have a substantial impact on their estate.
It appears that, as of 31 March 20071, 31,000 people were being fully funded by the NHS in care homes or in their own home. The department of health estimates that as a result of the new Framework, a further 5,500 people are likely to qualify and has earmarked £220m for the implementation from April 2008.
Pivotal to an understanding of the health/social services divide is the interaction between NHS Acts and the National Assistance Act (NAA) 1948. Although the NHS Act has been twice codified since originally enacted in 1946, the material responsibilities have not changed – although today found in the NHS Act 2006.
Section 21 NAA 1948 places a duty on social services authorities to provide residential accommodation for (amongst others) elderly, ill and disabled people. However, section 21(8) contains a caveat, namely:

“Nothing in this section shall authorise or require a local authority to make any provision authorised or required to be made (whether by that or by any other authority) by or under any enactment not contained in this Part of this Act, or authorised or required to be provided under the [National Health Service Acts 2006].”

In simple terms, section 21(8) means that it is unlawful for social services to provide a service that could be provided by the NHS. The full implications of this provision, however, had to wait until 1999 when the Court of Appeal delivered its judgment in R v. North and East Devon health authority ex p Coughlan 2.
Although the NHS/social services demarcation has existed since 1948, its key importance for many elderly people only came to prominence with the wholesale closure of NHS long-term beds (which occurred principally in the eighties and nineties)3 and an increase in inheritable wealth. By the early nineties, many individuals found that when they became chronically ill and needed care outside their own home, they had to pay for this in a nursing home, whereas previously they would have received it free in a long stay NHS bed. Not infrequently, this involved a forced sale of their home.4
In 1994, the Health Service Commissioner published a highly critical report concerning such a case5. In spite of considerable health needs, the patient was discharged to a nursing home where he had to pay for his care. The Ombudsman found that he had been improperly denied the option of seeking NHS Continuing Care funding and was so concerned about the situation that he took the exceptional step of having his report separately published. In response, in 1995, the government issued guidance that required every health authority to prepare and publish local ‘continuing health care statements’ that spelt out which patients would be entitled to free continuing health care funded by the NHS.
In 1999, the Court of Appeal delivered its judgment in R v. North and East Devon health authority ex p Coughlan 6. It reinforced the 1994 finding of the Health Service Commissioner, that entitlement to NHS continuing care support arose, not merely when a patient’s health care needs were complex, but also when they were substantial – the so called ‘quality/quantity’ criteria. In effect, the Court held that if a patient’s need for nursing care was more than low level in terms of its quality or its quantity, then it was unlawful for it to be funded by social services. The Court’s approach has been described as the ‘primary health needs’ test – namely, that if a patient’s primary need is for health care’ then the NHS is responsible.
There is no doubt that the government found the Coughlan judgment unwelcome, since to comply with it would have required it to divert significant resources to fund the long-term care needs of people who (by and large) were either paying for themselves or being funded by social services via the means tested system. Instead of amending the law (to exclude such people), it issued revised guidance in 2001 that had the effect of confusing and undermining the Coughlan judgment. The 2001 guidance has been the subject of much robust criticism, most particularly from the Health Service Commissioner who in 20037 described it as ‘opaque,’ and the system it created as unfair. This criticism culminated in 2006 with the judgment of Charles J in R (Grogan) v. Bexley NHS Care Trust 8 which effectively holed the 2001 guidance below the waterline. As a consequence, in June 2007 a new National Framework for NHS Continuing Healthcare and NHS funded Nursing Care in England9 was issued by the department of health accompanied by a draft of a Decision Support Tool10 designed to provide a fair and effective way of establishing individual entitlement to continuing health care. The Framework comes into force in October when Directions will be issued to underpin the new regime.

The new 2007 Framework guidance
The Framework guidance has many defects; not least that it retains much of the terminology of the discredited 1995 and 2001 guidance. It suggests, however, that use of the accompanying Decision Support Tool along with practitioners’ own experience and professional judgement ‘should therefore enable them to apply the primary health need test in practice in a way that is consistent with the limits of what can lawfully be provided by a local authority in accordance with the Coughlan and Grogan judgements.’ (para 28).

Fast-track pathway tool
The Framework guidance contains a ‘fast-track pathway tool’ designed for individuals with a rapidly deteriorating condition, which may be entering a terminal phase, who require fast tracking for immediate provision of NHS Continuing Healthcare. This might be where the person wishes to return home to die or to allow appropriate end of life support to be arranged. In such cases, the rate of deterioration would bring the patient within the ‘primary health needs’ requirement, and the Framework guidance provides for the use of a fast-track pathway tool, which can be used by a senior clinician, such as a ward sister, consultant or GP to outline the reason for the fast tracking decision.
The Framework guidance reminds primary care trusts (PCTSs) that careful decision making is essential to avoid undue distress that might result from moving in and out of continuing care within a very short period of time.

The decision support tool
The Framework guidance relies on a decision support tool as a way of measuring the extent of a person’s various health care needs, using it to decide whether or not these needs have crossed the NHS/social services boundary.
There are severe limitations in using standardised assessment tools to assess whether a patient may or may not qualify for NHS Continuing Healthcare. The tools tend to require micro-measurement of various factors that are then combined to produce a determination, or presumption, for or against qualification. Such tools, whilst they have their uses, are clearly open to considerable criticism. The most obvious point is that they cannot say where the line between NHS and social services responsibility lies.
Additionally, standardised assessment tools seek to render empirical a process that has been legally (not scientifically) determined, and may depend upon highly subjective factors. The choice of the individual factors to be measured and the range of scores available for these factors is also a subjective process. In her report on the Pointon11 complaint, for instance, the NHS Ombudsman was critical of the tools adopted by the relevant PCT, as they were ‘skewed in favour of physical and acute care,’ and did not take into account the patient’s significant psychological problems. Criticism has also been levelled at the use of tools on the grounds that they inhibit communication with patients and their carers – and thereby sideline crucial user information from the decision-making process.
The tool contains 11 care domains which all have to be completed, and there is space in each domain for the reasons why a particular level (‘no need’; ‘low’; ‘moderate’; ‘high’, ‘severe’; or, priority;) is appropriate. A table (reproduced for this article as Table one) summarises the domains, and demonstrates that not all have a ‘priority’ or ‘severe’ category.
A clear recommendation for NHS Continuing Healthcare would be expected if a person has a priority need in any one of the four domains that carry this level, or a total of two or more incidences in the severe category. It is, however, up to individual judgement if people with lower level needs than this qualify for NHS funding.
The tool is not meant to directly determine eligibility, and the guidance advises that the tool’s guidelines are not to be viewed prescriptively. It is for a multi-disciplinary team to consider all the factors and then to make a recommendation about eligibility to the relevant PCT12.
Only time will tell as to whether the Framework results in more NHS bodies correctly applying the criteria detailed by the various Ombudsman and Court decisions. Unfortunately, the track record of the Department of Health in producing NHS Continuing Care guidance that complies with the law is not good. At a theoretical level, it is difficult to be overly optimistic about the likelihood of the Framework faring any better. If, for instance, one takes the case of Ms Coughlan (whose condition was well documented by the Court of Appeal), it appears that the application of the Decision Support Tool to her circumstances would result in her being denied NHS support. The Court, however, held that her needs were well outside what social services could provide – of a ‘wholly different category’13.

Reviews
The Framework guidance states that cases should be reviewed three months following the initial assessment (including those who did not receive a full assessment following the application of the checklist) and at least yearly thereafter.14

Dispute resolution
The 2004 Directions, which detail the procedure for reviewing NHS Continuing Healthcare decisions, are to be revoked and replaced by similar Directions in relation to Strategic Health Authorities’ (SHAs) responsibilities for such reviews. It appears that the review process will be little altered.
The process consists of two stages: local resolution (which it states normally takes the form of a PCT review panel), followed by a further review by an SHA panel. Since it is the local resolution process that often causes the greatest difficulty for complainants (particularly the delay in convening a PCT panel), it is to be regretted that the opportunity has not been taken to impose time limits on the local resolution stage.
Once local resolution has been exhausted, the case should be referred to the SHA Independent Review Panel (IRP) that will consider the case and make recommendations to the PCT. The key tasks of the panel are to assess whether the PCT has correctly applied the Framework and has followed the processes set out in the guidance.15
The Framework guidance (at para 92 et seq) gives key principles that should be followed by the IRP regarding evidence gathering, involvement of the individual/carer, giving them opportunity to input at all stages, recording of the panel and clear and evidence-based written decisions.
The review procedure does not apply if individuals or their families wish to challenge the content of the eligibility criteria, the type or location of any NHS funded care, the content of any alternative package, or their treatment by any of the services they are receiving. This should be dealt with through the ordinary NHS complaints procedures.
Individuals must be informed of their right to use the review procedure, and advocates should be provided where this supports the individual through the review process. There should be a designated individual in each SHA to maintain the review procedure, and each SHA needs to identify clear time frames for the process, which should be made explicit, especially to individuals and carers.16 While the review procedure is being conducted, the PCT should continue to fund appropriate care. ‘Any existing care package, whether hospital care or community health services, should not be withdrawn under any circumstance until the outcome of the review is known.’17
Panels are open for key parties to put their views in writing or to attend, and an individual may have a representative. If the IRP needs independent clinical advice, such arrangements should avoid any obvious conflict of interest between the individual clinicians giving the advice and the organisation from which the individual has been receiving care. If a SHA decides in very exceptional circumstances to reject an IRP recommendation, it should put in writing to the individual and the Chairman of the panel its reasons for so doing. In all cases, the SHA must communicate in writing to the individual the outcome of the review, with reasons.
If the individual is still aggrieved the case should be referred to the Healthcare Commission.

Luke Clements is a consultant solicitor with Scott-Moncrieff Harbour & Sinclair, London and a professor at Cardiff Law School. Pauline Thompson is a policy adviser on care finance for Age Concern England. This article briefly considers the New Framework for NHS Continuing Care in England. For a more detailed analysis (including the legal situation in Wales), see Luke Clements and Pauline Thomson, Community Care and the Law, 4th edition (Legal Action Group, 2007).

References
1. Department of Health (2007) The National Framework for NHS Continuing Healthcare and NHS funded Nursing Care in England. Final Regulatory Impact Assessment;
2. R v. North and East Devon health authority ex p Coughlan [2000] 2 WLR 622: [2000] 3 All ER 850. (1999) 2 CCLR 285;
3. Between 1983 and 1993 there was a 30% (17,000) reduction in number of long term geriatric and psychogeriatric NHS beds Harding et al ‘Options for Long Term Care (HMSO) 1996 p8 and between 1988 and 2001 a loss of 50,600 such beds see The House of Commons Health Committee (2002) Delayed Discharges: Third Report of Session 2001-02 Vol: 1 HC 617-I, 35;
4.It is estimated that about 40,000 people sell their homes each year to pay for their care home fees, of which a conservative estimate suggests that between 120 and 640 should have had their fees funded by the NHS – Henwood, M (2006) Self-funding of long-term care and potential for injustice (Background Paper prepared for BBC Panorama);
5.Health Service Commissioner Second Report for Session 1993-94; Case No E62/93-94 (HMSO) concerning Leeds Health Authority in 1994;
6.See note 2 above;
7. Health Service Commissioner’s Second Report for Session 2002-2003 NHS funding for long-term care; Stationery Office. HC 399 para 38;
8. [2006] EWHC 44 (Admin): (2006) 9 CCLR 188;
9. Department of Health (2007) The National Framework for NHS Continuing Healthcare and NHS funded Nursing Care in England;
10. Department of health (2007) Decision Support Tool for NHS Continuing Healthcare (July 1st 2007);
11.Health service Ombudsman Case No. E.22/02-03 Complaint against Cambridgeshire Health Authority & PCT (the ‘Pointon’ case);
12.Para 58 and 59 Framework guidance;
13.at para 118;
14. Para 82 Framework guidance;
15. Para 91 Framework guidance;
16. This aspect of the guidance is different from the 2001 guidance regarding reviews which stated ‘Each Health Authority should aim to ensure that the review procedure is completed within two week of the request being received This period starts once any action to resolve the case informally has been completed, and should be extended only in exceptional circumstances’;
17. Para 8 Annex E.