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Barbara Gale has been involved in end of life care in the UK since the 1980s and has been Chief Executive of St Nicholas’ Hospice in Suffolk for some 11 years.

She spoke recently about the challenges of understanding the experiences of community visiting volunteers in the UK.

The 250 or so hospices in the UK are highly identifiable in the community and tend to easily attract volunteers to their service. While volunteers are active in inpatient settings this was not so much the case in the UK community.

“We know from the rest of the world that community volunteers are really important but not so in the UK. And I wanted to know why that was the case”.

She talked about a community-based and volunteer-led service Hospice Neighbours that she has created at St Nicholas’. The volunteers essentially function as a compassionate community with close links to the professional services capacity of the hospice.

“This enables them to respond to what the person needs, rather than prescribing a particular way of doing things”.

Barbara pointed out that one of the challenges in managing and designing a compassionate response in the community is in recognising the different relationships dynamic in the community. The solution must fit the problem but “we often choose a medical solution to address a community problem”

One of her observations is that hospices often fail to take notice of the feedback provided by volunteers in the community and in so doing disenfranchise their community, and impose rules around which volunteers feel the need to navigate in order to develop the relationships they need to develop in order to support people in their community.

“As hospices we need to work with communities but if we can’t work with volunteers how can we work with communities?…Do we want volunteers to be constrained or do we want them to be death literate members of our community?”

Barbara was speaking at the Death Literacy Conference held recently in Sydney.