Memorandum by the National Network for
the Palliative Care of People with Learning Disabilities (PC 44)
1. The Network links palliative care and
learning disability specialists from around the UK and from the
Irish Republic to share and spread good practice in meeting the
physical, emotional, spiritual and social needs of people with
learning disabilities who are experiencing life-threatening or
life-limiting conditions. We work directly with people with learning
disabilities themselves and with their families, advocates and
2. We welcome the Select Committee inquiry,
and support the submission to that inquiry from Help the Hospices.
3. "Learning disability" describes
a wide range of intellectual impairment, deficits in social functioning,
and personal histories. Some people with that label are home owners,
spouses and parents, and employees. However, 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.
4. These more substantially disabled people
More limited social networks.
More limited life experiences.
Limited access to information they
A greater likelihood than their non-disabled
peers of living either with ageing parents or in residential homes
or other supported accommodation.
A significant risk of being locked
into a categorisation of "learning disability" that
blocks out recognition of other issues and impedes access to other
A significant risk of being under-supported
in their daily lives, and of not being appropriately monitored
by people who know them well enough to identify changes and explore
5. The Help the Hospices submission touches
on this inequality of access to palliative care services.
6. There are good examples of specialist
learning disability palliative care services, although they are
few and far between, and of generalist outreach and hospice services
catering successfully for people with learning disabilities. In
other cases, failure to diagnose a life-threatening condition
means that the opportunity for timely palliative care support
is lost, and people suffer un-necessary pain and distress. In
some cases, communication barriers and lack of liaison between
palliative care and learning disability services mean that access
to specialist help is denied.
7. The goal is that people with learning
disabilitieswho are now living longer and therefore falling
heir to the cancers and other conditions that the rest of us experienceshould
get the right help from the right sources in the right form at
the right time. (People with learning disabilities are actually
more likely than their non-disabled peers to experience some cancers,
and to experience dementia and certain other conditions to which
palliative care is relevant.)
8. The Recommendations made by Help the
Hospices would, if implemented, be of benefit to people with learning
disabilities. In addition, we would recommend:
Serious consideration of the rigidities
which make it hard for people who need nursing care to stay in
their own residential home or supported accommodationalternating
between this and in-patient hospice care where appropriate.
Use of the "Valuing People"
White Paper concepts of Health Action Plans and Health Facilitation
to ensure that as the NHS role in learning disability services
changes, the health care needs of people with learning disabilities,
including palliative care needs, are better addressedthrough
planning, equal access requirements, and staff training.
Further work on identifying and eliminating
the barriers to people with learning disabilities having access
to the full range of palliative care support created by the discontinuities
between learning disability and palliative care services.