Select Committee on Health Sixth Report

5  Problems with the existing continuing care eligibility criteria

73. The development of a single, national set of continuing care criteria presents an opportunity not only to achieve consistency across England, but also to redesign the criteria to address enduring problems with existing criteria. Our evidence has identified several major concerns:

  • that current criteria take insufficient account of mental health needs, particularly disadvantaging those with dementia;
  • that criteria must take account of a wide range of needs, not only those of older people;
  • that the lack of clarity about the distinction between continuing care criteria and the criteria for assessing the RNCC must be resolved;
  • and, finally, that existing criteria may not in fact be compatible with the Coughlan judgement.

Insufficient focus on mental health needs and dementia

74. Much of the evidence we have received highlights particular difficulties around the area of mental health, and specifically dementia, which it is estimated affects as many as 75% of residents in care homes.[59]

75. The Department of Health has stated repeatedly that eligibility for continuing care is not based on diagnosis but on need, and the Minister explained this in detail to us:

    People with dementia are as entitled to NHS continuing care as anybody else. However, the judgment has to be whether they need, in order to maintain their condition or to improve their condition, the regular involvement of healthcare professionals. If somebody with dementia does not need that regular involvement of healthcare professionals, then they will fall outside the criteria for NHS continuing care. If they do require the involvement of healthcare professionals, they will come inside the criteria and they will get their NHS continuing care, as was the case with Mrs Pointon. She did get for her husband NHS continuing care.[60]

76. The Pointon case is a helpful example, but not, as the Minister implied, of the continuing care criteria working effectively to take account of the needs of those with dementia, but rather of the reverse. Barbara Pointon only succeeded in securing continuing care funding for her husband, who suffers from Alzheimer's, after a lengthy battle which culminated in her taking her case to the Ombudsman.

77. Mrs Pointon described her experiences to us:

    What has got to me is the notion that one size fits all. Malcolm's assessments took very little account of important features of dementia such as panic attacks, hallucinations, inability to communicate or understand, and the psychological effects of the illness. Unless you ask the right questions, you will not get the right answers in the assessments.[61]

78. Upholding Mrs Pointon's complaint, the Ombudsman concluded:

    The local eligibility criteria reflected the guidance from the Department of Health, but … the ambiguities within the criteria, particularly those referring to dementia and sensory and/or physical disabilities, caused staff to produce inappropriate assessments that concentrated solely on Mr Pointon's physical needs.[62]

79. The current criteria for continuing care focus on the issue of stability. However, according to the Alzheimer's' Society, people in the late stages of dementia are often classed as stable and predictable and, as their condition worsens, they in fact become less likely to qualify for NHS continuing care:

    The … criteria that we are really concerned about is the one around "stable and predictable". It is probably the one that we get most feedback on, and anger from carers. If you have Alzheimer's you are going to get worse and you are going to decline, and ultimately you are going to be in the palliative stage of dementia. Our experience and feedback from people is that as you decline you are less likely to be eligible for continuing care, which is not what you expect. If you are sitting very passively or lying in a bed, you are perceived to be easier to care for. We do not agree with that; we think you need much more intensive support to help you have a good quality of life.[63]

80. Julia Cream of the Alzheimer's Society argued that, as most nurses have very little training in dementia, they often unable to recognise mental health needs in that group when carrying out assessments.[64] This view was endorsed by Mr Houghton of the Ombudsman's office:

    In some cases it became obvious from looking at the nursing notes or the care home notes, that there were, for example, regularly occurring psychological needs. With the best will in the world, a single nurse looking alone at these may not be able to pick these up or may not see the significance of them when seen in a pattern of behaviour.[65]

81. It is not solely those with Alzheimer's who appear to be suffering under these criteria. According to the Motor Neurone Disease Association, existing Department of Health guidance on continuing care clearly indicates that Motor Neurone Disease (MND) is "exactly the type of complex, degenerative condition that the scheme is designed for, yet currently, many people with MND are unable to obtain the continuing care to which they are entitled due to geographical variations in the interpretation and application of the eligibility rules." They went on to give stark examples of this:

    We know of one lady who died just after being refused continuing care on the grounds that she didn't have pressure sores or need daily visits from her GP. This was actually because of the quality of the care she was receiving in a very good nursing home.

    There is also evidence to suggest that those people handling continuing care applications do not have a good enough understanding of the conditions they are likely to encounter. We are aware of cases where a request for an assessment has been questioned because the person "only has MND".[66]

82. The Parkinson's Disease Society raised similar concerns:

    Too often we receive calls and letters outlining situations where through a lack of understanding about the impact of the disease people have been denied NHS funding for their long term care … The fundamental problem with the NHS continuing framework as it currently stands is that in most cases people in later stages of progressive neurological conditions are not recognised as entitled to full NHS continuing care … The inequality experienced by people with Parkinson's disease is apparent when compared to someone with a "recognised" illness.[67]

83. These concerns were supported by Mackintosh Duncan, a firm of solicitors who were involved in the Coughlan case, and specialise in the law around continuing care:

    We have been assisting many people with mental health difficulties and/or learning disabilities in relation to continuing care issues. Our experience is that it is most difficult, if not impossible, to obtain fully funded NHS care for a person with mental health difficulties or learning disabilities unless they have the most extreme challenging behaviour, or their mental disabilities are accompanied by physical health needs.

    There seems to be an assumption that mental health nursing or learning disabilities nursing is 'non medical' due to the fact that it involves high levels of supervision, as opposed to physical invasive treatments. [68]

84. Our evidence indicates that current eligibility criteria for NHS continuing care are heavily weighted towards physical needs, to the detriment of mental health and psychological needs. It strikes us as perverse that, under current criteria, in the case of Alzheimer's Disease the further a person's illness progresses, the less likely they are to qualify for continuing care funding, even though they in fact need more intensive health care to maintain a good quality of life. Sufferers from other progressive and degenerative conditions, including Motor Neurone Disease and Parkinson's Disease, are similarly disadvantaged. We recommend that the Government's new national eligibility criteria be designed explicitly to give the same weight to mental health and psychological needs as to physical needs.

Flexibility to meet a wide range of needs

85. Although the majority of those receiving NHS continuing care funding are elderly people, the issue is not confined to older people, and indeed there are several other groups who make significant use of continuing care funding, including children, adults with learning disabilities and mental health needs, people with chronic, degenerative conditions, and people who are terminally ill.

86. We heard differing views about whether or not separate criteria should be established to cater for the differing needs of different client groups. Yvonne Cox, Chief Executive of Oxfordshire Learning Disability NHS Trust, argued that the criteria did need to be different to take account of different needs and expectations at different stages of life, and that current guidance took insufficient account of other needs: "the guidance is predominantly around older people, delayed transfers and so on, and the issues those raise." [69]

87. However, Cath Attlee of Hounslow PCT argued that the same principles of promoting and enabling independence should be applied to older people as well as to younger adults. Elaine McHale of the ADSS suggested that the inclusion of children within the same framework as younger adults and older people could have a positively beneficial effect:

    I firmly believe that if children were accommodated within the continuing care policy, then you would see a different long term commissioning arrangement of service provision, which would build for the future and contribute to the aspirations we have around government policy.[70]

88. It is not appropriate to produce separate eligibility criteria to cover different client groups. However, eligibility criteria must be able to adequately meet the needs of all those who need continuing care, whatever their age or diagnosis, and the Government should take account of this in developing its new national eligibility criteria for NHS continuing care.

Confusion over the Registered Nursing Care Contribution

89. The Registered Nursing Care Contribution (RNCC) system was introduced in October 2001 on a phased basis, to transfer responsibility for funding the nursing care[71] of those in care homes to the NHS. Under the RNCC system an assessment of a patient's nursing needs is carried out by a qualified nurse, and a patient will be graded according to a three banded system, which will determine the level of funding they get for their nursing care needs:

  • low (£40pw from 1 April 2005),
  • medium (£80pw from 1 April 2005) and
  • high (£129pw from April 2005).

90. The Department of Health has provided the following guidance for assessment for the RNCC:

    The High Band - People with high needs for registered nursing care will have complex needs that require frequent mechanical, technical and/or therapeutic interventions. They will need frequent intervention and re-assessment by a registered nurse throughout a 24 hour period, and their physical/mental health state will be unstable and/or unpredictable.

    The Medium Band - People whose needs for registered nursing care are judged to be in the medium banding may have multiple care needs. They will require the intervention of a registered nurse on at least a daily basis, and may need access to a nurse at any time. However, their condition (including physical, behavioural and psychosocial needs) is stable and predictable, and likely to remain so if treatment and care regimes continue.

    The Low Band - The low band of need for nursing care will apply to people who are self-funding whose care needs can be met with minimal registered nurse input. Assessment will indicate that their needs could normally be met in another setting (such as at home, or in a care home that does not provide nursing care, with support from the district nurse), but they have chosen to place themselves in a nursing home.[72]

RNCC payments are made directly to the nursing home where the patient is a resident, as under current legislation the NHS cannot reimburse individuals directly.

91. Although the RNCC system should technically operate separately from the continuing care system, with continuing care funding being provided to those with the very highest needs, and the RNCC system applying to those who do not qualify for continuing care funding but still require nursing care, the evidence we received suggested considerable confusion and significant overlap between the two systems. This is partly because the wording used in the RNCC criteria is almost identical to that used for continuing care. To qualify for high band nursing care, people will need to be assessed as having an "unstable" or "unpredictable" state of physical health. However, as people assessed as qualifying for fully funded continuing care must also have "unstable" and "not easily predictable" health care needs, this raises the question of whether it is possible to distinguish between high band nursing care and continuing care funding. This confusion was raised in many written submissions, and was also a major finding of the independent review.

92. John Pye of the Royal College of Nursing argued that the confusion stemmed from two policies developed in isolation without adequate reference to each other:

    It came along as a reaction to the long term commission. It also did not take into account the policy we already had in place for continuing health care, and the two sides have never married up. I was listening to previous speakers about the combinations and the relationship between the RNCC and continuing healthcare. It was never thought about when RNCC came out, and we have ended up with two policies and two procedures matching in everything including the words, which places a great difficulty on us within the nursing sector and certainly within PCTs in trying to disseminate and make decisions on who funds and who does not.[73]

93. This confusion was also noted by the Ombudsman in her report and, following legal advice, her office has written to the Department to seek clarification about whether, given the similarity of the wording used in both sets of criteria, those who have been found to qualify for high band free nursing must in fact also meet the criteria for full funding:

    It seems to us, and is supported by our legal advice, that if a person's needs for registered nursing care are deemed to be at high band RNCC level, it is difficult not to say that that person should also be eligible for NHS continuing care funding, given the similarity of the wording … it is difficult to see how a person with healthcare needs that properly place him or her at high band RNCC would even have reached the stage of an RNCC assessment, had he or she been properly assessed for NHS continuing care. This is because the level of health care needs that warrant high band RNCC would seem to be, at the least, equivalent to those that should qualify a person for continuing care funding, if not higher. [74]

94. Responding to the Ombudsman's letter, the Department acknowledged that confusion had arisen at a local level. Although the Department's letter did not specifically address the Ombudman's argument that if a person's needs for registered nursing care are deemed to be at high band RNCC level, that that person should probably also be eligible for NHS continuing care funding, given the similarity of the wording, the letter did suggest that this confusion will be resolved in the forthcoming review:

    When the Minister, Stephen Ladyman, announced the work to develop a national framework for NHS continuing care he made it clear that this should include NHS funded nursing care. Also the development of the Single Assessment Process, and ensuring all aspects of care needs are taken into account through that process, has already been identified as the way to make sure the process is handled correctly and consistently. This will be the opportunity to clear up confusion and there could be options for a significant change to the interface between NHS funded continuing care and NHS funded nursing care.[75]

95. In oral evidence, the Minister told us that there were no plans at the moment to integrate the two systems, although he did not rule out the possibility. However, he did offer to ensure that, if the two independent systems remain, detailed guidance will be issued to clarify the distinction between continuing care and high band RNCC.[76]

96. It seems to us a nonsense that two separate systems exist for assessing eligibility for fully funded NHS continuing care and for nursing care contributions as fundamentally both systems are doing the same thing, which is determining NHS funding of ongoing health care. We have heard from several authoritative sources, including the Ombudsman, that the criteria for assessing eligibility for continuing care and high band nursing care are virtually indistinguishable from each other, causing considerable problems for those charged with applying them, and raising the possibility that, in fact, everyone who qualifies for high band RNCC should also automatically qualify for fully funded continuing care.

97. We are surprised that these two distinct policies regarding the funding of ongoing health care have been developed by the same Department with seemingly no regard for ensuring coherence or harmony between the two systems. We urge the Government to put right this confusion and end unnecessary bureaucracy immediately. It seems to us that the simplest way to achieve this would be to integrate the two systems. If the two systems continue to co-exist, there must be clarification of the interaction between them, and we recommend simplification of the banding system.

Questions over whether the criteria are actually Coughlan-compliant

98. The Law Society, Solicitors for the Elderly, and Mackintosh Duncan argued that current criteria, both for continuing care and for nursing care contributions, set the bar too high to be 'Coughlan-compliant'.[77]

99. In 1999, the judge in the Coughlan case ruled that, as Pamela Coughlan's needs were primarily for health care, the Health Authority was liable to fund her entire care package - in other words, that she should qualify for fully funded NHS continuing care. Thus the judgment in Coughlan establishes that where a person's primary need is for health care, and this is more than 'ancillary' or 'incidental' to their needs for accommodation, the NHS is responsible for the full cost of the package. Social services authorities may only purchase nursing care in strictly limited situations, in accordance with the judgment.

100. The Department of Health subsequently issued guidance to Health Authorities asking them to ensure their eligibility criteria were 'Coughlan-compliant'. Mackintosh Duncan described the test of 'Coughlan-compliance' very simply:

    Any national framework/criteria must operate so that if Ms Coughlan were to present herself in any area of the country, she would be eligible for fully funded NHS continuing care.[78]

101. According to the Department of Health, all 28 sets of eligibility criteria now operating are legal and in line with current guidance.[79] However, Mackintosh Duncan, the Law Society and Solicitors for the Elderly all argued that the Coughlan case would itself have failed to meet the requirements of the guidance on eligibility criteria, as Pamela Coughlan's condition was stable and predictable, but with a high level nursing care needs.[80] They also argued that, as the guidance is currently written, Pamela Coughlan would not have been eligible for high band nursing care, or even, in all likelihood, for medium band nursing care:

    Ms Coughlan's condition and needs were said by the Court of Appeal to fall wholly within the funding responsibilities of the NHS. However, her particular needs are considerably less than the majority of residents in nursing homes. Therefore, applying the RNCC tool, Ms Coughlan would not meet the medium or high band of RNCC, let alone the (higher) threshold of fully funded NHS care. Given the comments of the Court of Appeal regarding her individual needs, we consider that this has been overlooked by health authorities in developing their criteria.[81]

102. Mackintosh Duncan went on to assert that, accordingly, very few of the criteria currently being used by SHAs were actually 'Coughlan-compliant':

    We have seen many sets of eligibility criteria currently being operated. In our view, none of those criteria are in accordance with the Coughlan judgment. In many cases, people would be eligible only if they were near death. There continues to be a mistaken belief that chronic health care for patients in a stable condition is no longer the responsibility of the NHS. This was the very error which led to the Coughlan case being brought.[82]

103. The Minister has stated that all 28 sets of eligibility criteria now operating are legal and in line with current guidance. However, we have received evidence which calls this in to question, arguing that in fact the Coughlan case itself would have failed to meet the requirements of current eligibility criteria, either for NHS continuing care, or for high or even medium band RNCC, as Pamela Coughlan's condition was stable and predictable, although she had high level nursing care needs. Mackintosh Duncan solicitors, who specialise in continuing care law, told us that of the many sets of eligibility criteria they have seen which are currently being used, "none of those criteria are in accordance with the Coughlan judgment". These are very serious charges which the Government must answer. The new national eligibility criteria must be explicitly Coughlan-compliant, ensuring that all people whose primary need is for health care will receive fully funded care, even if this requires a fundamental revision of the definitions and terminology of the criteria.

59   Q112 Back

60   Q315 Back

61   Q108 Back

62   Health Service Ombudsman for England, The Pointon Case, November 2003, para 43  Back

63   Q113 Back

64   Q115 Back

65   Q207 Back

66   CC22, paras 3.4.1-2 Back

67   CC24, paras 3.1, 6.1 Back

68   CC32 Back

69   Qq12-13 Back

70   Q14 Back

71   Care provided by registered nurses Back

72  Back

73   Q132 Back

74   CC23B Back

75   CC09D Back

76   Q328 Back

77   CC35, CC17, CC32 Back

78   CC32 Back

79   HC Deb, 9 December 2004, col 108 WS Back

80   CC35, CC17, CC32 Back

81   CC32 Back

82   CC32 Back

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