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.
1. EXECUTIVE
SUMMARY
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.
2. INTRODUCTION
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.
3. FACTUAL INFORMATION
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 placereinforcing 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.
4. RECOMMENDATIONS
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
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
|