Background People from BAME communities are known to have specific palliative care needs. Different cultural approaches may have substantial impacts both within families, and on service use. Despite this, services are often provided ‘for’, rather than ‘developed with’ Muslims. In response to this, Muslim community members in East London have used a Compassionate Community-style approach, acknowledging end of life care as a social process, and everyone’s business.
Aim To develop a culturally inclusive, BAME-community-led befriending and advocacy service, working with those who are isolated, terminally ill or reaching end-of-life. The intention is to work in partnership, with a focus on cultural, spiritual and social needs, rather than to replace existing provision.
Methods Since its start in 2013, Eden Care has provided an end-of-life service which is open to needy people from all communities. There are currently 35 Eden Care volunteers, most of whom are ‘experts-by-experience’ after experiencing terminal illnesses alongside family members or friends. 15 of the volunteers have undergone a DBS check and vetting process, and received specialist training to provide high-quality, non-discriminatory and non-judgmental services.
Results 15 people/clients have been paired with a befriender providing support with personal, social and spiritual needs. A Rapid Response Team can carry out 24/7 visits when a person is nearing death. The grassroots, responsive approach means that additional work is now also being done with a support service for Muslim burials; and on giving voice to those nearing end-of-life and the wider community, thereby enhancing the local statutory end-of-life strategy.
Conclusions Clients and families who might be considered ‘hard to reach’ by statutory providers are served in truly responsive and culturally appropriate ways when communities lead the work.
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