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Excellence in palliative and end-of-life care provision for people with intellectual disability.

BACKGROUND:
People with an intellectual disability experience significant inequalities in end-of-life and palliative care provision.


AIMS:
To identify the key characteristics of practice initiatives and case reports that have won a UK award for the outstanding provision of end-of-life care for people with ID (2008-2018).


METHODS:
Thematic content analysis of the written nominations for award winners and those highly commended (n=25).


FINDINGS:
Four themes were identified: (1) Good practice was dependent on 'champions' with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools.


CONCLUSION:
The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations.