Select Committee on Health Written Evidence


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 professional carers.

  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 have:

    —  More limited social networks.

    —  More limited life experiences.

    —  Communication deficits.

    —  Limited access to information they find meaningful.

    —  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 services.

    —  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 needs.

  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 disabilities—who are now living longer and therefore falling heir to the cancers and other conditions that the rest of us experience—should 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 accommodation—alternating 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 addressed—through 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.

February 2004

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