During the interview, Sharon focused in particular on the need for greater cultural awareness and better training to help deliver this. Specifically, she made the following points:
- The death of her mother just over a year ago – the experience may have been different due to the pandemic but she struggled to get the right care at home and she wouldn’t trust the ‘system’ given her experience and is angry about what happened
- Cultural awareness and the training involved need to improve with faith group and community leaders involved. We (the health service) need to understand what is important to people from their cultural and religious and spiritual background. It is about their quality of life, not just from clinical perspective. The spiritual aspect of dying is so much more important to some faith group communities (e.g. this could mean laying on the ground, so the mattress needs to be on the floor).
- Greater financial resource needs to go into recruiting carers from as many different backgrounds as possible and into the training (as outlined). This training could be commissioned to voluntary sector organisations, that brings together different faith groups, BAME networks, LGBTQ+ groups, learning disability, mental health and homeless. All those parts sit within the voluntary sector, which are trusted within local communities.
- If local communities knew that the equality and inclusion training was being delivered by local known organisations to palliative care staff, that would send a different message. It would show that we are serious about equity of services and are making the changes by listening to what the communities have been saying about all NHS services for a long time. This is particularly relevant to community based palliative care.
- Good, clear communication does help but you have to get the trust right first by involving ethnic minority and other excluded groups in the set-up of a new service and the delivery of training. Doing this would show you are serious about inclusion.
- People will then understand and think about their choices, instead of thinking that this service doesn’t really represent us, so therefore I can’t use it.