Learning Disabilities and Palliative Care :

Building Bridges - Supporting Care

Is there a need?• The number of people with LD over 60 years of age is set to

rise by 36% between 2001-2021 and so too their need for palliative care( Office of National Statistics,2005)

• People with LD may have elderly family/carers who have palliative care needs (1/3 of people with LD live with carers over 70)

• There is widespread agreement that people with LD have poorer health than the general population and face barriers when accessing palliative care

• Staff in learning disability services are often not experienced in caring for dying people

• Palliative care services are not necessarily experienced in caring for individuals with learning disabilities

Widening Access through nurse leadership major grant

Burdett Seedcorn Grant • In 2011 a series of workshops were held across NHS

GG&C with 22 staff ( 14 from LD and 8 from PC).• The aim of these workshops was to identify what support

would help both these groups of staff in their delivery of palliative care to people with LD.

• The results provided clear evidence that there is a need for a practice development initiative – to support and consolidate good practice within both

LD and PC teams.

The Project• Initially the Project was South Glasgow based but

with additional funding from the Scottish Government the project will now cover the whole of NHS GG&C where there are 6 hospices and 8 LD teams, for a period of 16 months.

• The project will link in with the NHS GG&C Learning Disability Strategy

• Outputs from the project will be shared nationally.

The Purpose • To bring two specialities together using a practice

development approach to support staff in the provision of the best quality care for people with Learning Disabilities who have Palliative Care needs.

The Project Aims• People with LD are at the heart

of this project, with the ultimate aim being to improve their care.

Aim One• To develop partnership working, building

relationships at both strategic and clinical levels between local palliative care and learning disability teams.

Aim Two• To introduce a care pathway to deliver appropriate

and high quality palliative care for people with LD, including guidance for referral to specialist palliative care.

Aim Three• To ensure all staff have easy access to locally

adapted resources, including assessment and support tools, and ensure staff are equipped with the knowledge and skills to use these resources.

Aim Four• To link with the clinical workforce teams building

upon their knowledge, skills and confidence to ensure they provide high quality palliative care to meet the needs of people with LD.

Aim Five• To ensure Hospice services are accessible and

appropriate for people with LD.

The Future

The key to this project is partnership working, Learning Disabilities and Palliative Care Working

Together

LIZ SMITHliz.smith@ppwh.org.uk