In 2019 the hospice was contacted to provide easy-read literature explaining what hospice care is for a person with a learning disability. As an organisation we didn’t have this kind of documentation and we couldn’t source it from elsewhere. This set us on a journey of collaborative working and service co-design with our local Community Learning Disabilities Team and Learning Disabilities Patient Experience Group (LDPEG).

The first draft of the leaflet was utterly ‘trashed’ by the group; they were particularly critical of the images we had used as none of them were of our hospice building and none of them contained people with a learning disability. As a result, a number of the LDPEG visited the hospice and met with staff. They proved very insightful and challenging in their questioning of the work we do as well as about death and dying. We were in the process of finalising the leaflet, using members of the LDPEG in the photographs as well as piloting a wellbeing group when COVID-19 hit and everything had to be postponed.

We are now in a position to re-commence that work. We have an afternoon tea event scheduled for 23 June to celebrate Learning Disability Week and will hopefully be in a position to complete the easyread literature before Hospice UK’s conference in November. In talking to professionals and carers we are aware how challenging advance care planning discussions can be, and we hope to pilot a group for people with learning disabilities and their families/carers to introduce hospice care and advance care planning discussions. This will hopefully address some of the shocking inequalities in end-of-life care people with a learning disability can experience.

We also plan to provide bereavement support, not only to families and informal carers. but also to paid carers who may have had a longstanding relationship with an individual prior to their death.