Access to end of life care services for patients from Black, Asian and other minority ethnic (BAME) communities has been a concern for clinicians over the years. Our perception survey in 2006 found that there was no response from people from BAME communities. This appeared to confirm anecdotal evidence from staff that the number of patients from BAME communities accessing our services did not reflect the real need. We carried out an exploratory study in 2007–2008 to identify barriers to our services for patients from BAME communities. Using qualitative methods we established that the main issue was the dearth of information about health and social care services beyond hospital and nursing homes.
We also found that many people from BAME communities were members of diverse cultural and spiritual groups and cared for and supported each other during times of family celebration, illness, death and bereavement. Communities referred to this support as ‘our way of life’ (seva/unhu/ubuntu) never ‘volunteering’ or ‘work’. Our study demonstrates that communities are in their members’ lives well before and after health and social care services are on the scene as Kellehear (2005) states. We started the compassionate communities project (CCP) to explore the feasibility of partnership working with communities to support more people to achieve their preferred places of care and to increase people’s awareness of hospice care services.
The involvement, where appropriate, of community expertise in supporting people at end of life can make the difference between a good death and bereavement and a difficult one. CCP re-empowers communities to have conversations around taboo subjects like death, dying and loss. The project has widened to include people with protected characteristics (Equality Act 2010).
Our paper seeks to add to literature on public health approaches to end of life care. Drawing from our real lived experience, we will provide some tips on engaging hard to reach communities in end of life care work.
This paper was presented at the recent 4th International Public Health and Palliative Care Conference 2015 as an oral presentation. The feedback was positive and identified new learning – including how to engage with resistance and turn resistors into advocates. The method of presentation created through story and conversation between two presenters was found to be accessible and made learning ‘real’.
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