Select Committee on Health Written Evidence

42. Evidence submission from Help the Hospices (PPI 17)

  This submission has also been shared with the Help the Hospices user group chair, David Hart. Help the Hospices requests the opportunity to give oral evidence.


  Patient and Public Involvement is an integral part of the development and provision of hospice and palliative care services. It is an active process, involving the people who receive and experience services. By involving users, it gives them a voice and allows them to speak out and act for themselves. The most valued kinds of involvement are where changes are made reflecting service users' rights and needs; where people are directly involved in decision making. Good involvement makes a difference and can lead to noticeable change and improvement in people's lives.


  Help the Hospices is the national charity that supports the hospice movement, founded in 1984 to provide national support for the growing local hospice sector in the UK. Help the Hospices supports over 220 local hospices across the UK. This support is provided through a wide range of services aimed at helping hospices provide the best care for patients and their families. User Involvement aids our vision which is of a world in which the best possible care is available to all people at the end of life, whatever their circumstances. The Help the Hospices User Involvement Group is a national group of palliative care service users. The group is diverse in terms of ethnicity, geographic location, illness and condition. The group has established itself as a working group to help support user involvement at a local level in the independent hospice sector and to support Help the Hospices develop their own user involvement work. It also gives an opportunity to give something back and share experiences with others. The group is committed to building on its initial progress and developing future work to support Help the Hospices and the work of local hospices. It also monitors and connects with the NHS patient and public involvement agenda.


  The Help the Hospices User Involvement group carried out a User Involvement Survey of UK Hospices. The questionnaire was sent to 220 hospices across the UK and 54 completed responses were received. Results were compiled into a report to show the findings and widely made available by email. The results show the importance of User Involvement within hospices. Some users have instigated significant change to their hospices, in areas such as buildings, layout, food, staffing, visiting hours and activities. However, user involvement activities were not in place in a considerable number of hospices. The survey found that hospices have acknowledged that it is important to make developments in this area. Lack of knowledge and resources are key factors of why user involvement did not take place—reinforcing the fact that education and promoting awareness of user involvement is necessary. As a result of the survey half of the respondents agreed to a member of the Help the Hospices User Involvement Group visiting their hospice to start activity in this area, and Help the Hospices held a seminar in 2006 about user involvement with more scheduled to take place in 2007.


  It is essential that engagement occurs with the patient and public at the end of life to support hospice and palliative care service development. Users should be involved to assist services provided by national and local organisations through

    —    training;

    —    planning and managing services;

    —    inspection and service monitoring,

    —    defining quality standards;

    —    research and evaluation; and

    —    producing learning materials;

  The voice of hospice and palliative care users ensures services reflect the reality for people with a terminal illness. With this knowledge, hospices can provide better and more appropriate care for their patients.

  4.1  A lack of resources is hindering the development of user involvement in hospices. Given that hospices provide care on behalf of the NHS, PCTs should support and resource user involvement in hospice care on the same basis as they do for all their services. This would support for example, education and training and promoting awareness of user involvement. This is part of a general call for hospice and palliative care services to receive a "level playing field" with other service providers in terms of funding, regulation, pensions etc.

  4.2  LINks should include hospice and palliative care service representation eg through user groups. There should be involvement of independent hospices in this, with national co-ordination.

Help the Hospices

3 January 2007

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