Learning Disabilities and Palliative Care Project
Learning Disabilities and Palliative Care Project

Where to find us:

The Prince & Princess of Wales Hospice
Allison O'Donnell / LIz Smith

Practice Development Facilitator (PCPWLD)
71 Carlton Place
G5 9TD

Tel: 0141 429 5599(dd) 0141 429 9878 (f) 0141 429 2566


Or use our contact form.

Pathway : Supporting people with learning disabilities through the palliative care journey.

A key outcome of the Building Bridges Project has been the development of an integrated Care Pathway . The development of the Pathway was endorsed in the Scottish Government Learning Disability Strategy -Keys to Life.   

The  Pathway has been developed to support practitioners in both learning disability and palliative care services with a view  to improving the patient and carer experience through the endorsement of person centred and holistic care planning.

A pilot of the Pathway took place from September 2014- February 2015 and including 27 patients from across GG&C and patients from Ayrshire and Arran Health Board. Learning Disability Nurses were identified as coordinators of care for the audit. There were improvements in outcomes for the majority of  patients during the Pilot period and a full report and recommendations is currently with policy advisors for consideration. The Pathway is still therefore in draft form and we would welcome your feedback.

Please contact me directly  with feedback or for further information Allison.O’Donnell@ppwh.org.uk



People with learning disabilities (PWLD) frequently experience various barriers in accessing effective and appropriate health care and are often marginalised from regular health services. These barriers, linked with a lack of understanding about the palliative care role, add to difficulties accessing palliative care services.


In addition to different malignant and non-malignant disease profiles in the learning disability population it is also widely recognised that there are increasing numbers of PWLD living at both ends of the age spectrum with co- morbid conditions and complex health needs and that there is a growing need for palliative care provision. PWLD who have life limiting illness require skilled support from their core care team with access to specialist palliative care services being available when needed, including early interventions.

However there are a number of issues in recognising and acknowledging the need for palliative care for this group, additionally Key Practitioners involved in the Project suggested that prognostic indicators were often overlooked making access to services more difficult.

It was established (following an initial scoping exercise in 2011 by the Prince and Princess of Wales Hospice (PPWH) and Greater Glasgow and Clyde (GG&C) Learning Disabilities Service, funded by a seed corn grant from the Burdett Widening Access Through Nurse Leadership Programme), that staff from both Learning Disability (LD) and Palliative Care (PC) services required support in meeting the needs of this group.

In response to this, the award winning project “Learning Disabilities and Palliative Care: Building Bridges -Supporting Care” was launched. With funding from the Scottish Government; The Prince and Princess of Wales Hospice and Help the Hospices (Year 1 only), this project is a working example of partnership and collaborative working. Links have been established at both local and strategic levels within LD and PC services, including all six adult hospices and all LD Teams within the geographical area.

This has been core to the success of the Project as this approach has allowed the development of the Key Practitioner role. Key Practitioners have been authorised, assigned and resourced by Hospice CEOs and LD Services and are involved in regular opportunities to learn together and to work together. This has led to robust partnership working and a shared mutual respect for each others roles. There have been subsequent changes in practice- individually and organisationally. It is furthermore envisaged that this approach will lead to the sustainability of good practice and future partnership and collaborative working.

The project is led by senior practitioners representing both LD and PC services. Allison O’Donnell who is a learning disability nurse from GG&C and Liz Smith who is a palliative care nurse from the PPWH.

The initial focus of this project was to ensure that LD and PC staff across GG&C worked collaboratively and in partnership, developing the skills, knowledge and confidence required to provide high quality and effective palliative care for people with learning disabilities.

Through the development of a sustainable Project Model the focus has been a practice development approach advocating and implementing education and support for staff. Subsequently an integrated Care Pathway has been developed and a supportive document Considerations for Care produced to give guidance to practitioners to improve the patient and carer experience through the endorsement of person centred and holistic care planning. The document supports the integrated Care Pathway and also endorses reasonable adjustments promoting equitable palliative care provision for people with learning disabilities regardless of setting. Support begins when there are initial concerns raised about the person’s health and enables care and support to be coordinated through-out the patient’s journey when palliative care is appropriate.


Although there has been considerable debate about the term Pathway, specifically within Palliative care services, it was decided after much negotiation with Key Practitioners and Steering Group members to continue to use this term. It was acknowledged that each patient’s journey will be unique and the Pathway is a tool to support each patient’s individual journey- it will not determine the course of the journey.

The Project has supported the LD practitioner’s enablement role by developing relationships and a Pathway which embeds co-working within the wider health and social care system in keeping with LD service redesign within GG&C. The Pathways title will therefore be Supporting People with learning disabilities through the palliative care journey.

A pilot of the above Pathway took place from September 2014- February 2015 including 27 patients from across GG&C and patients from Ayrshire and Arran Health Board. Learning Disability Nurses were identified as coordinators of care for the audit, some had been involved in the Project previously as Key Practitioners and some including the nurses from Ayrshire and Arran had no previous connection to the Project.

The Sampling frame was concerned with individuals who had a known learning disability and were known to Adult Learning Disability Teams and, as defined by the world health organisation, palliative care needs.

The samples were from across two health boards GG&C and Ayrshire and Arran. An initial target of 20 patients from within GGC and 10 from Ayrshire and Arran was set. Final numbers audited were 17 from GG&C and 10 from Ayrshire and Arran. 2 patients died during the time frame of the Pilot.




Palliative Care Pathway
Support Pathway PQPDF.pdf
Adobe Acrobat document [111.7 KB]
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