Healthwatch Cumberland (HWC) and Healthwatch Westmorland and Furness (HWWAF) were recently commissioned by the NENC ICB to complete an important piece of work regarding end-of-life care.
Over a five-week engagement project, we heard from rural and under-represented communities on one of life's most challenging topics: end of life and palliative care.
The partnership work was carried out as part of the North East and North Cumbria (NENC) Network of 14 local Healthwatch. Data and information gathered will inform NENC Integrated Care Board’s End of Life care strategy and needs assessment.
The team led some focus groups with different demographic groups of people, to find out their perspectives on end-of-life care. We connected with communities often excluded from healthcare conversations: coastal and rural residents, the LGBTQ+ community, people with learning disabilities, and carers navigating complex issues of provision of end-of-life care.
Chloe delivered a focus group with members of the LGBTQ+ community:
“I had the opportunity to carry out a focus group that specifically represented the end-of-life experiences of the LGBTQ+ community. It brought up a healthy discussion surrounding the wishes of those who are coming to the end of their lives, sharing the concerns of their partners and how they are considered during that time. One example shared was that if they weren’t married, that they wouldn’t necessarily be considered as Next of Kin. Therefore, may not be able to have a say in the discussions and plans, bringing up further discussion regarding how they are seen by family/friends explaining that their partner has been seen as their ‘house mate’ previously. Another member of the group shared that their family are not accepting of their relationship/sexuality so this would be their reality if they were not married and had a will.”
“Afterwards, we debriefed and the feedback was that the discussion was helpful as it encouraged them to reflect and think about their own mortality. One person shared that they usually only have these difficult discussions whilst experiencing a bereavement themselves, so quite nice to chat more freely without the rawness of grief in the midst.”
Caitlin led a focus group with members of a learning-disabled self-advocacy group, using an easy read survey created by the HWC and HWWAF teams:
“The focus group I completed was with Workington Self-Advocacy group and we had a casual conversation around End-of-Life care following some semi-structured focus group questions. It was particularly important to speak to this group as the group reside in a rural and coastal community with learning disabilities and physical disabilities.”
“I think this focus group was really beneficial for those who participated as it sparked important conversations around finances and wills with many of the group having learned something new by the end of the session. As I regularly attend the group as a co-facilitator, trust had already been built with the group to ensure members felt comfortable and safe speaking about this difficult topic.”
“My perspective of the important factors to consider within End-of Life care changed drastically. The gaps in knowledge within this group was shocking considering many require assistance in their daily lives. People with learning disabilities and physical disabilities should be confident and reassured that their wishes will be taken into account and know how to make plans for end of life.”
Our engagement revealed gaps around supporting people with learning disabilities to think about wills, finances, and end of life planning, as well as cultural and identity factors affecting end of life care preferences.
Signposting support
If you are going through bereavement, or would like some support and information about end of life care, you can contact the following services:
- Cruse Bereavement Support
- Marie Curie
- BEAD Project for those bereaved due to alcohol or drugs
- Hospice at Home West Cumbria
- Hospice at Home Carlisle and North Lakes
The project has ended but if you have an experience to share about end of life and palliative care please contact us at: [email protected]