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Palliative care

7.20 In the past, patients tended to be referred for palliative care only when they were in the terminal phase of their illness.

But increasingly palliative care is being seen as an integral part of care; often being delivered alongside cancer treatment services. The principles of palliative care - holistic, patient-centred care - apply across all conditions and in all settings.

7.21 But providing the best possible care for dying patients remains of paramount importance. Many people receive excellent care from the NHS or from the voluntary sector in hospitals, hospices or at home at the end of their life, but some do not. Too many patients still experience distressing symptoms, poor nursing care, poor psychological and social support and inadequate communication from healthcare professionals during the final stages of an illness. This can have a lasting effect on carers and those close to the patient, who often carry the burden of care. The care of all dying patients must improve to the level of the best.

7.22 Only one third of health authorities have developed strategies for specialist palliative care provision and services are uneven. Some regions have twice as many specialist palliative care beds, whether in a voluntary hospice or in a specialist NHS unit, as others. The same is true for home care nurses.

7.23 All patients should have access to the specialist palliative care advice and services that they need. For most patients, these will be provided in their homes, in the community or in hospital. Some will require the specialist facilities of a hospice. Voluntary palliative care services need to be enabled to play their full role in the cancer network, with adequate funding from the NHS.

Warwickshire Health Authority - Managed Clinical Networks Project: palliative care beacon

The Integrated Service Directorate (ISD) brings all the providers together in one forum. All the NHS specialist staff are now in a single team. Other members come from primary care (GP representatives) and from the charitably funded hospices. The ISD board decides how the funds for palliative care can best be spent for the benefit of patients wherever they live. The outcome of this is a unified service in which a patient known to one nurse, doctor or other health care worker can get the help and advice they need from any part of the service. Over time, equal access to care any time of the day or night will be available for all patients, relatives and their own family doctors.

7.24 For too long the NHS has regarded specialist palliative care as an optional extra. The NHS has relied upon the good will, and funding, of charities. The National Council for Hospice and Specialist Palliative Care Services estimates that the voluntary sector has been investing around £170 million a year in hospices and palliative care. Hospices have rightly argued that the NHS should invest more in palliative care services.

7.25 So by 2004 the NHS will invest an extra £50 million to end inequalities in access to specialist palliative care and to enable the NHS to make a realistic contribution to the cost hospices incur in providing agreed levels of service. This will mean that, for the first time ever, NHS investment in specialist palliative care services will match that of the voluntary sector. This unprecedented increase in funding will be used to ensure greater cohesion between the efforts of the voluntary sector and the NHS.

7.26 The Department of Health will agree with the voluntary sector the core elements of specialist palliative care which should be available for all patients. This additional investment will be targeted to support those services for patients that are agreed to be appropriate and meet national standards.

New Opportunities Fund initiatives for palliative care

7.27 There is evidence that black and ethnic minority communities and socially deprived groups have reduced access to palliative care services. Patients from these groups are unlikely to take up services, which are culturally unsuitable or are delivered in an insensitive way. A total of £23.25 million has been allocated by the New Opportunities Fund (NOF) for the Living with Cancer initiative. This is exclusively aimed at providing palliative care, home care support, support for carers and information about cancer and cancer services to black and minority ethnic communities and socially deprived groups. These projects will be running by the beginning of 2001.

7.28 In addition to the £50 million NHS funding for specialist palliative care, there will be a further NOF initiative for community palliative care services over the period 2001- 2005. A consultation document on new NOF initiatives will be issued in autumn 2000.

Top Action and Milestones

2000

  • Cancer Information Advisory Group set up by Department of Health National electronic Library for Health - Cancer library to be launched

2001

  • All cancer networks to draw up training and development plans to ensure all health professionals working in cancer units and centres are to be trained and supported in communication skills, including a policy on breaking bad news
  • Cancer networks should take account of the views of patients and carers when planning services
  • All health authorities should identify current investment in specialist palliative care services and in the voluntary sector and work with cancer networks to agree investment strategies for palliative care
  • Cancer Information Advisory Group to review information available for patients, identify gaps and to develop guidance on production of cancer information.
  • Publication of NICE guidance on supportive care
  • Publication of supportive care strategy.

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