Introduction Learning disabilities (LD) affect about 1.5 million people in the UK and are common, lifelong conditions which are neither illness nor disease. 1200 people with LD die in hospital each and every year and one in three health professionals think they receive worse quality healthcare than those without learning disability. At St Clare Hospice, we developed a special interest group and explored barriers and possible ways to deal with those barriers.
Methods A group was developed with membership from hospice, primary care, hospital, social services and other stake-holders. A survey was carried out with hospice staff about their confidence in supporting patients with LD. Following that a group meeting was held to discuss barriers and methods to deal with that.
Analysis and Results Ten hospice and LD staff returned the survey. Twelve professionals with medical, specialist, nursing and managerial backgrounds attended a focus group discussion. The following themes for barriers were recognised:
Lack of knowledge among staff on needs of patients with LD.
Poor co-ordination between services.
Lack of understanding by families about services.
Often complex family and social circumstances.
Referral criteria and the lack of understanding of the differences between ‘learning disability’ and ‘learning difficulties’.
Misunderstanding about the services the hospice offers and assumptions that people are admitted to die.
Delayed referrals to palliative care by primary and secondary care.
Lack of knowledge about family support work.
Fear of foreshortening life by referrals.
Lack of pathway of care for patients with LD.
Lack of advance care planning.
The following themes were identified for training:
Data on patients with LD.
Service users’ experiences.
Issues around death and dying.
Advance care planning.
Support for staff looking after patients with LD.
Conclusion There is a need to develop collaborative initiatives for palliative care for patients with LD, working across hospice, hospital, primary care, social services and care homes.
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