Between February 2021 and March 2022, we ran a specialist Learning Disability project thanks to funds received from the Masonic Charitable Foundation and Hospice UK. 

The overall aim of the project was to help people with Learning Disabilities, their families and carers to prepare for death and bereavement. We aimed to improve end of life care for people at all stages of support, from advance care planning to care of the dying and bereavement support. 

The project allowed us to recruit a specialist Learning Disability Nurse, Sue Marsden, who worked directly with hospice patients and families. Sue provided a vast education programme to hospice staff, as well as Learning Disability services and charities across our catchment area, other hospices across Sussex, and local people with Learning Disabilities. We ran 11 training sessions in total covering topics such as advance care planning, ReSPECT, breaking bad news and symptom control. As a result, the training sessions benefitted at least 150 people with a Learning Disability in our catchment area. We also produced an intranet site for staff with access to training, resources and a virtual tour of the hospice with Makaton signing.

The project has dramatically increased the knowledge and understanding of end of life care for those with Learning Disabilities in both the hospice and the wider hospice sector. It has allowed us to build strong relationships and an ongoing community of practice so that the needs of this group are better met moving forward. 

Moving forward, patients and family members with Learning Disabilities in the hospice will receive sensitive care appropriate to their needs as staff are more aware of these. Those with Learning Disabilities in our wider catchment area will receive faster referrals to support due to new relationships made between the hospice and Learning Disability organisations.

This feedback from a patient’s family member demonstrates the value of the project:

‘The suggestions you gave us were practical and easy to implement. They have helped our son to understand some of what is happening to his grandad. It has removed some of the anxiety and helped make the abstract a bit more concrete for him. It has made me feel better too, in that I’ve felt more able to prepare him for his grandad’s death and work through all the changes with him, both physical and emotional.’ You can read more about how we have been supporting this family on our blog.