A support network for people with learning disabilities

Project overview

Research evidence such as the LeDeR annual reports demonstrates the need to improve palliative, end of life and bereavement care for people with learning disabilities (LD). In 2019, St Giles Hospice received a referral from Friends 2 Friends, a local charity that supports adults with LD. This highlighted significant gaps in the hospice’s provision.

With funding from the Masonic Charitable Foundation, through Hospice UK, St Giles used a community engagement approach to work with local organisations and people with lived experience. Together they began to build a sustainable network of palliative, end of life and bereavement support for those with LD.

The project aimed to:

• improve the hospice’s understanding of the lived experience of local people with LD and their palliative, end of life and bereavement care needs
• improve the hospice’s records about people with LD accessing services
• increase referrals to St Giles Hospice for people with LD
• improve understanding about palliative, end of life and bereavement care among people with LD and their networks 
• increase conversations about advance care planning among people with LD and their networks
• help people with LD achieve death in their usual place of residence and reduce the number of people with LD dying in hospital.

Outcomes

The hospice established a steering group with 13 members. This included:

• people with learning disabilities (LD) and their networks
• representatives from local LD organisations
• hospice staff
• local statutory health and care services. 

The steering group formed a network of 12 local LD support groups and organisations, working together to embed palliative, end of life and bereavement support in local services for people with LD. Network meetings were held during Learning Disability Awareness Week.

They surveyed members of the network to find out what support they needed to have conversations about death, dying and bereavement with someone with LD. The findings informed the development of a training programme for local LD Champions, which has been delivered to mixed cohorts of hospice and non-hospice staff and volunteers.

Two thirds of survey respondents identified a need for resources to support people with LD and their carers at end of life and in bereavement. In response, the steering group built a collection of resources which can be shared locally to support discussions. These resources include Beyond Words books.

To help with data collection and monitoring, it is now possible to record that a patient has a learning disability on the hospice’s electronic patient record system.

Key facilitators

Working alongside people with LD has been a vital part of ensuring resources, care environments and approaches are inclusive.

An unanticipated surprise was the extent to which James Channon and Simon Cox, two steering group members with lived experience of LD, grew into their roles. They grew in confidence throughout the project and were key contributors to the delivery of the LD Champions training – so much so that they were presented with a ‘One to Watch’ Award at the national Palliative Care for People with Learning Disabilities (PCPLD) Network’s Linda McEnhill Awards in 2021.

Due to staffing uncertainties during the COVID-19 pandemic, it was not possible to employ one person to fulfil the Learning Disability Support Worker role.

To overcome this, the hospice agreed a Memorandum of Understanding with Friends 2 Friends to share delivery of the role. St Giles provided senior management oversight of the project plus the majority of the Learning Disability Support Worker role (3 days per week). Friends 2 Friends provided LD expertise.

Because St Giles used a community engagement approach, the project will be sustainable without the need for continued funding. The hospice plans to:

• continue supporting the network of LD Champions 
• carry out an assessment and review of the hospice environment, with support from network partners (this was planned as part of the original project but was delayed due to the pandemic)
• continue to work in consultation with network partners to improve accessibility of information for people with LD
• continue to work with people with lived experience of LD to improve knowledge and understanding of their palliative, EOL and bereavement needs.