House of Commons - Health

Select Committee on Health Fourth Report

3 Equity in palliative care

54. A key area of our inquiry, referred to in almost all the submissions we received and frankly acknowledged as a major concern by the Department,[59] is the lack of equity in the provision of palliative care. Health inequalities are compounded in that services are disproportionately needed in areas of social deprivation and disproportionately present in areas of social affluence; services deal predominantly with cancer patients and seem not to be geared to the palliative needs of other disease groups; services are underused by those in black and minority ethnic communities; services favour some age groups over others; and they seem hard to access by those with complex needs.

Inequity by geographical area

55. The National Council for Hospice and Specialist Palliative Care Services acknowledged that the Cancer Networks were beginning to undertake network-wide assessments of needs. Preliminary findings already indicated the inequity of distribution: "the Network with the highest estimated need has one of the lowest ratios of beds to population … two of the Networks with the least need have two of the highest ratios of beds to population".[60] A lack of evenness of distribution is not confined to adult services. Lizzie Chambers, for the Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), suggested that there was a concern that children's hospices "are not being strategically planned".[61]

56. The local initiative to establish or support a hospice is often the outcome of individual charitable initiatives and this results in an inverse relationship of provision to need. Once palliative care was recognised as an important component of healthcare resulting, for example, in a WHO definition at a global level and a Department of Health policy position at a national level with the publication of the NHS Cancer Plan, the issue of achieving equity of access became more prominent. Much of our evidence suggests that there is need for more equitable distribution of both hospices and of care at home through an assessment of the needs of the population, greater planning of services and the introduction of detailed contracting arrangements.

57. Tom Hughes-Hallett for Marie Curie described the "extraordinary inequities" that exist in service provision. He cited the example of Yorkshire, telling us that Marie Curie was asked to provide 20,500 nursing hours to North Yorkshire, which has a population of 886,000, but only 11,000 nursing hours to West Yorkshire, which has a population of 2.3 million.[62] To support the argument that there is a severe mis-match between service provision and need, Peter Tebbit for the National Council for Hospice and Specialist Palliative Care Services told us that his organisation had developed a methodology to undertake comprehensive, population-based needs assessments. Using this Comparative Index of Need, the Northern Cancer Network, comprising Newcastle and Northumbria, was found to have a need for palliative care 30% above the average but to have only half the average number of beds; Surrey had a need 20% below the average but had one of the highest complements of beds to population in the country.[63]

58. According to evidence submitted by the Cicely Saunders Foundation:

59. The geographical inequities that have developed in the provision of palliative care in general, and hospice provision in particular, are a direct result of the charitable history of this sector. The development by happenstance that has characterised the availability of facilities is increasingly recognised as unacceptable. The Department acknowledged to us in its memorandum that "the government recognises that provision of palliative care services has not been equitable" and "is firmly committed to tackling inequalities in palliative care provision". We welcome this position but we remain concerned about the laissez-faire approach to achieving this objective, and do not altogether share the confidence of Christine Shaw, for Help the Hospices, that "the historic pattern is not the pattern we will see in the future".[65] The risk is that the historic pattern will become entrenched. However, we agree with Ms Shaw that a national strategy is required to address needs and funding together. The fact that there are within the NHS some 42 palliative care units, whilst the majority of hospices are in the voluntary sector, indicates a basis for a further study as to the relationship between the NHS and the voluntary sector in relation to the provision of palliative care.

60. The Minister for Public Health, Melanie Johnson, implied it would be a mistake to focus too narrowly on hospice provision in assessing the equity of distribution of specialist palliative care. She told us that it was preferable "to accept that we already have a diverse pattern of provision in palliative care, and that diversity and richness is likely to continue—the exact configurations varying from area to area".[66] She suggested that the funding formula for PCTs already recognised the needs of a local population in health terms and that the historic "imbalances" that had emerged would "be addressed fairly rapidly by the future arrangements".[67] She also maintained that the move to PCT commissioning of services would help ensure that "provision meets the need".[68]

61. We recommend that the Department analyses the Comparative Index of Need drawn up by the National Council for Hospice and Specialist Palliative Care Services to assess whether a better match between need and provision can be agreed.

62. We accept that palliative care goes well beyond hospice provision; however, the role of a hospice within the spectrum of provision is an important one. We are uncertain how the Government plans to ensure greater equity in service provision in the context of devolved responsibilities to PCTs, and without clear guidance on the preferred models of care. An acceptance of the current diversity of provision could also entail tolerance of continued inequity. We urge the Department to consider what more can be done to inform PCT commissioning of palliative care services by the issuing of clearer guidance on preferred models of care. We deal below with the possible impact on equity of provision of additional Treasury funding for hospices.

Inequity by patient group

Inequity by age group

63. Palliative care services for children, adolescents and young people raise a number of distinctive issues. Children with terminal conditions (such as cystic fibrosis) are surviving for much longer than was the case in the past, with a corresponding shift in emphasis in services. Care can be needed over a period of many years, involving different combinations of general care, respite care, palliative care and terminal care. Increasingly, the focus is on quality of life and enabling the young person to participate in education and social activities, to maintain as normal a life as possible "and to be young people first and foremost".[69] In fact, the hospice is only one element of a child's care, and we were told that it is often in school that a child or young person will receive the majority of their healthcare.

64. Thankfully, the number of children diagnosed with a life-limiting illness is relatively small. According to Professor Stuart Tanner, Adviser on Paediatrics and Child Health to the Department, approximately one in a thousand children have such an illness and around 10% of these die each year.[70] These children typically have a different pattern of illness from adults with terminal conditions. Children with life-limiting conditions are less likely to have cancer, and more likely to have congenital heart disease, neurological or developmental conditions.

65. Evidence from Dr Lynda Brook, one of only three consultants in paediatric palliative care in England and Wales, suggested that an important difference between children's and adult palliative care was that children and their families prefer to be supported as much as possible by those professionals known to them and who have cared for them from the point of diagnosis, through the child's illness to end of life care. There are no dedicated NHS inpatient beds for children's palliative care and it was suggested by Dr Brooke that end of life care in hospital for children is often of a poor standard. Given the comparative rarity of death in childhood, she considered that there was a specific need for palliative care expertise to support other healthcare professionals involved with the care of children with life-limiting conditions.

66. Provision of palliative care for children is closely bound up with support for carers. Lizzie Chambers, for ACT, told us that parents were usually the "chief carer" for children.[71] But although the majority of families would want to care for their child in the home it was important for there to be a proper range of options. For example, the presence of a children's hospice might offer the prospect of respite care, offering a break both for the family and for the child with friends in a hospice. Thus, in her view, hospices were an "essential" component of palliative care for children.[72] We asked her if the current provision of 34 operational children's hospices, with another eight planned, was an appropriate response to demand. She told us of her concern that these were not necessarily being "strategically planned", yielding the same sort of inequities discussed above.

67. ACT drew particular attention to a gap in services for adolescents and young adults bridging children's and adults' services, noting that the transition between the two was often "badly managed".[73] Currently children's hospices are not able to treat anyone aged over 18, leading to problems of continuity. The Association of Children's Hospices, the national umbrella organisation working on behalf of all UK children's hospice services, described the availability of services for young people aged 13-24 years as "very patchy". They noted that the requirements of the Care Standards Act 2000, and their local interpretation, was "restricting the ability of children's hospices to accept referrals of young people aged 16 and over".[74]

68. A possible catalyst for improvement in children's palliative care services lies in the forthcoming National Service Framework for Children, which Dr Ladyman told us would have a chapter on this subject. He felt that this document would assist PCTs in their strategic planning to work towards the appropriate range and level of provision.

69. We hope that the forthcoming National Service Framework for Children will acknowledge the particular difficulties of the transition from adolescent to adult services. We also believe that boosting the role of carer and giving proper support in care are vital components of palliative care for children.

70. Age Concern described problems at the other end of the age spectrum, with some older people being less likely to receive specialist services. This they attributed to some providers placing more emphasis on younger cancer sufferers than on older ones; to the beliefs and attitudes of some health professionals to older people and death; and to the expectations of some older people themselves.[75]Philip Hurst, Health Policy Officer for Age Concern, suggested that typically the referral route to specialist palliative care was through specialist cancer services, which older cancer sufferers tended to access less than younger ones. Moreover, the disease bias towards cancer in palliative care, which we discuss below, discriminated against the increasingly prevalent age-related conditions such as respiratory failure. In Mr Hurst's view, the key need was to shift attitudes. He felt it was particularly important to ensure that health professionals' training, education and development confronted these issues.[76]

INEQUITY BY ETHNICITY

71. Patient discrimination is not restricted to age. A number of studies have suggested lower utilisation of palliative care services by black and minority ethnic users. A 1999 analysis in Derby found that only 1.5% of patients referred to palliative care were from black and minority ethnic communities, even though these groups formed 9.7% of the city's population. Help the Hospices similarly noted that only 3.9% of the adult hospice population was non-white, while black and minority ethnic groups formed 8.7% of the total population. However, it needed to be borne in mind that such groups formed only 2.6% of the population aged over 65 years.[77] Gurch Randhawa and Alastair Owens, who have carried out research into this issue, suggested a number of factors underlying the under-representation of black and minority ethnic communities in palliative care:

certain types of cancer are less prevalent in these populations, though evidence here is lacking
services are culturally insensitive
there is a perception that palliative care services are available only for white middle class patients
there is a lack of information provided to minority ethnic groups, and a lack of translation facilities.[78]

72. Another issue raised in evidence is the fact that the hospice movement grew out of a Christian, charitable movement which is not always receptive—or at least is not perceived to be receptive—to other faiths and cultures. Rashid Gatrad, in an article in the British Medical Journal, illustrated some of the cultural barriers in this area:

73. Dr Wiles, for the Association of Palliative Medicine, suggested that the problem lay not so much in the attitudes of hospices themselves but in the way they were perceived:

74. Tom Hughes-Hallett for Marie Curie Cancer Care was, however, anxious to dispel the idea that hospices were merely "a collection of bodies full of very well-meaning and excellent nuns".[81] None of their hospices was named after a saint, and their newest was in Bradford. The family room in that hospice, normally used by a few friends and relatives, had recently accommodated 250 people who came to grieve for an Asian woman who had died.

75. The Department is currently funding a study in Warwickshire to address how inequalities relating to ethnicity in palliative care services can be addressed.[82] Melanie Johnson also told us that the Department was issuing grants to organisations such as the Policy Research Institute, Cancer Equality and Cancer Black Care to look at ways of overcoming some of the social barriers in place.[83] While there were some very good examples of specialist palliative care in respect of black and minority ethnic users, the difficulty was in mainstreaming best practice.[84]

76. We received evidence from the New Opportunities Fund (which distributes money from the National Lottery to those at the greatest disadvantage in society) that demonstrated that its Community Fund has given substantial awards of money to a number of projects concerned with palliative care, especially hospices.[85]Both the adult and the child programmes have been aimed at disadvantaged regions and groups with particular regard to black and minority ethnic communities' access to cancer services and children's access to palliative care services. We were pleased to learn that some programmes have led to new ways of working, innovative approaches and the delivery of services to marginalised groups.

PATIENTS WITH COMPLEX NEEDS

77. A final group suffering discrimination is patients with complex needs. The Association of Hospice and Specialist Palliative Care Social Workers observed that its members had raised the issue of the lack of attention to the needs of people with learning difficulties in palliative care. This point was supported by the National Network for the Palliative Care of People with Learning Disabilities, which noted that "those with more substantial disabilities tend to have characteristics that make them less likely to have awareness of and secure access to palliative care services when they need them".[86] Such individuals were more likely to have more limited social networks, to have greater communication deficits and to be living with aged parents.

78. We welcome the fact that the Department recognises the problems of inequitable provision of palliative care services relating to age, ethnicity and complex needs. We also welcome the research they have commissioned in this area to improve services and to bring into the mainstream the good practice that exists patchily. We believe it is important that work on improving the accessibility of palliative care services does not focus solely on that provided within hospice buildings. It is at least as important that community palliative care services are available (and acceptable) to members of black and minority ethnic communities, to older people and to those with complex needs. These may well be provided by hospices, as is already often the case. The need to ensure that all services are culturally sensitive should form an important dimension of the training of both generalist and specialist palliative care staff.

Inequity by disease

79. The lack of palliative care for non-cancer sufferers constituted a major and recurrent theme of our evidence. The Department itself admitted that this was the greatest inequity of all in palliative services. Over 95% of those in hospices have cancer. Cancer dominates the structure through which palliative care is mapped and distributed. Cancer underlies the NICE guidelines that will apply to palliative care. One submission even noted that palliative care was not separately indexed in the Department of Health website but appeared as a sub-heading under "cancer".[87] Yet cancer is actually the cause of death in about a quarter of the population.

80. Help the Hospices noted one estimate that suggested that "there may be as many as 300,000 people dying from progressive diseases other than cancer each year who need palliative care".[88] Professor Irene Higginson has estimated that as few as 1% of those who might benefit from some palliative care have access to specialist palliative care services.[89]

81. A number of other charities speaking on behalf of 'under-represented' diseases criticised the inequity of provision. The British Lung Foundation described the "bias" towards cancer patients compared with long-term chronic conditions such as chronic obstructive pulmonary disease.[90] The Motor Neurone Disease Association suggested that many hospices gave preferential access to those suffering from cancer, with some imposing a limit of one motor neurone disease (MND) patient at any one time. They noted that, while MND was a devastating disease, with a typical trajectory such that half of all patients died within 14 months of diagnosis, many hospices would only provide respite care, or care in the later, terminal stage of the disease.[91] The Alzheimer's Society argued that most forms of dementia were terminal conditions but that few patients with dementia accessed palliative care. The problem was partly the uncertain trajectory of the disease. One estimate suggested that the end of life stage could last two to three years, this in a disease which could last in all 10 to 20 years. The Society suggested that this, together with ageism and stigma, underlay the lack of palliative care facilities for patients. An additional concern was that pain was not well palliated for those with dementia.[92]

82. Dr Keri Thomas pointed out that some hospital palliative care teams had up to 30% non-cancer referrals but that fewer than 10% of hospice beds were devoted to non-cancer patients. This she ascribed to:

limited capacity
different expectations from patients and carers
different trajectories of diseases other than cancer
a lack of appropriate expertise in specialist units.

83. Dr Thomas noted that in America around 15-20% of hospice inpatients had heart failure, whereas in England around 98% of patients had cancer. She felt that the Government's strategy towards end of life care was too disease-focused, dependent on "specific NSFs, where these exist" and failed to acknowledge the potential of the voluntary sector to contribute more effectively. Help the Hospices agreed that there was a risk that a disease-specific approach, as advanced by NICE, was likely to lead to fragmented care.

84. Professor Mike Richards for the Department suggested that "one of the key differences" was the likely course of non-cancer diseases compared to cancer. While cancer patients were usually relatively well for a long time and only required special care for a short period, for other patients there could be a slow, and far from steady, decline.[93] He suggested that one way in which this problem could be addressed would be by 'skilling up' those providing general palliative care, for example by encouraging specialists in palliative care to work more alongside generalists from other disciplines. Such a process would have the additional benefit of educating palliative specialists in other disciplines, given that they normally had a background in cancer medicine. Professor Richards told us that many patients who are dying from heart failure, chronic lung disease and other conditions have many symptoms which "are broadly quite similar to those experienced by cancer patients". This suggests that the key skills developed in specialist cancer services are transferable to other diagnostic groups.

85. The Department itself cited research to suggest some of the contiguities between other life threatening conditions and cancer, highlighted in research from Professor Irene Higginson:[94]Prevalence of problems (per 1,000,000 population)

% with symptom in last year of life % with symptom in last year of life

Symptom Cancer patients Progressive non-malignant disease

Pain 84 67

Trouble with breathing 47 49

Vomiting or nausea 51 27

Sleeplessness 51 36

Mental confusion 33 38

Depression 38 36

Loss of appetite 71 38

Constipation 47 32

Bedsores 28 14

Loss of bladder control 37 33

Loss of bowel control 25 22

Unpleasant smell 19 13

I. Higginson. Palliative and Terminal Care in Health Care Needs Assessment (1997) Ed A Stevens and J Raftery. Radcliffe Medical Press.

86. Some of our witnesses were sceptical about the impact of the recent NICE guidance. While the clear exposition of the core services that should be provided in palliative care for adults with cancer was welcomed, some questioned the way in which such guidance was interpreted locally. Moreover, because the guidance does not address the needs of patients with a non-cancer diagnosis, witnesses emphasised the need both to 'translate' the messages of the guidance for other patient groups, but also to match this with central funding as has been the case with stimulating the development of cancer services.

87. A separate but related issue is the extent to which long-term chronic conditions, which cannot be cured but are not immediately life-threatening, should be included in mainstream palliative care. The Stroke Association, for example, noted that little palliative care was given to non-cancer patients. Yet stroke patients might benefit from expert treatment in pain relief which was a feature of good palliation.[95] Professor Richards told us that the Department was "definitely" thinking about the application of palliative care to such conditions. He argued that the NICE guidelines on Supportive and Palliative Care were relevant here, in that they recognised that people had physical, psychological , social and spiritual needs throughout their care pathway. However, the Department needed to "define the service models which are going to be the best for diseases other than cancer".[96] Work was ongoing with the Chronic Care management programme and the End of Life care initiative.

88. We note the suggestion of Rowena Dean of Hospice at Home of the desirability of a national needs analysis of non-cancer diagnosis requiring palliative care.[97] We recommend that the Department undertakes such an analysis.

89. While we welcome the guidelines on supportive and palliative care for adults with cancer published by the National Institute for Clinical Excellence (NICE), we are concerned that an opportunity has been missed to extend the range of palliative services. The guidance relates solely to cancer services, even though cancer accounts for only one quarter of all deaths in the population. The principles and recommendations would be broadly applicable to the general and specialist palliative care for patients with conditions other than cancer. We recommend that the forthcoming National Service Framework for Long-Term Conditions assumes responsibility for palliative care in non-cancer conditions and takes full account of the recent NICE guidance. It should incorporate the key principles of the NICE guidance as far as possible in order to remove the distinction that is made in the palliative care for cancer patients and for patients dying from other diseases.

90. The transition towards more central Government funding of hospices should afford an opportunity to introduce greater equity in the caseload than hospices manage currently. We develop this point below.

59 Ev 5 Back

60 Ev 278 Back

61 Q219 Back

62 Q107 Back

63 Q110 Back

64 Ev 311 Back

65 Q115 Back

66 Q321 Back

67 Q305 Back

68 Q315 Back

69 Q91 (Jane Scott, Team Leader Children's Health Services, Department of Health) Back

70 Q4; around 4,500 children aged under 16 years die in England each year (National Statistics, Mortality Statistics, 2001) Back