Background In 2016 the Care Quality Commission published a review of end of life care which heard from people who may be less likely to receive good care – whether because of diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances – and found that this may be because their specific needs are not always understood or fully considered by providers and commissioners. Later in 2016 the Government announced six commitments to end variation in end of life care in England by 2020 (Department of Health, 2016).
Aim/s This project explored what the six point commitment on end of life care means for three groups identified by the CQC’s review; Gypsies and Travellers, LGBT people and people experiencing homelessness. It sought to understand the particular needs of these groups in making the commitments a reality and to share evidence and personalised end of life care examples.
Methods The project was guided by an advisory steering group and informed by a literature review plus focus group and stakeholder consultation. Case studies of emerging practice and innovation were sought through the group’s networks and wider communication channels.
Results Five principles for delivering personalised end of life care for children, young people and adults were identified; including enabling strategic level partnership working; good communication to support informed decision making; workforce training and support. A practical guide has been produced for commissioners, service providers and care professionals.
Conclusions In identifying work to improve personalised end of life care for the three groups, the project also found a need for more evidence and research. Equitable end of life care needs to be a local priority and better data about needs and access to services is required.
This project was funded as part of the national Voluntary Community and Social Enterprise Health and Wellbeing Alliance.
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