Learning disabilities and palliative care: building bridges, supporting care

Categories: Care.

Palliative care for people with learning disabilities (PWLD) is often complex but it is vital that we face these challenges, especially as life-limiting illness is more prevalent in the learning disability population and PWLD die on average 25 years younger than the general population.1,2 

PWLD have the poorest health of any of the marginalised groups and have poorer health outcomes than their non-disabled counterparts.3 Issues around communication, differential diagnosis, diagnostic overshadowing, capacity, consent, institutional discrimination, attitudes and assumptions are cited as major barriers to PWLD accessing appropriate and effective healthcare.4 It is apparent that these issues apply as much to palliative care services as they do to primary and secondary health care, with PWLD less likely to access specialist palliative care than the general population.5

Increasing numbers of PWLD are living at both ends of the age spectrum with co-morbid conditions and complex health needs and there is a growing need for palliative care provision.6 It is therefore becoming increasingly important to grasp the significance of palliative care across the age range of PWLD who have life-limiting or life-threatening illness or conditions.

It is only through inclusion, education, by making reasonable adjustments and developing robust partnerships that lead to collaborative working that PWLD will experience equity in accessing palliative care services. In order to accelerate improvements in care for PWLD who have palliative care needs it is crucial that there is a commitment to partnership working between palliative care and learning disability services.7

Building bridges – supporting care

As a result of growing awareness of these issues within NHS Greater Glasgow and Clyde (GG&C), staff from both learning disability and specialist palliative care services have acknowledged that there are a number of issues in recognising the need for palliation and that prognostic indicators are often overlooked making access to palliative care more difficult for this group.

In 2011 The Prince and Princess of Wales Hospice in Glasgow carried out a scoping exercise, within the context of widening access to palliative care for excluded groups. A series of workshops were held with representation from both learning disability and specialist palliative care staff from across GG&C. The aim of these workshops was to identify professional learning and development needs.

This exercise led to an increased understanding of the challenges faced by both learning disability and palliative care professionals in supporting the learning disability population, including:

  • communication
  • symptom management
  • decision making
  • staff confidence
  • choice
  • place of care
  • collaboration/ partnership working.

These challenges then formed the basis the project ‘Learning disabilities and palliative care: building bridges-supporting care’. This unique project is jointly led by senior practitioners from learning disability and palliative care services and is hosted within the Widening Access Team at the Prince and Princess of Wales Hospice. It endorses both the national palliative care and learning disability agendas and outcomes will be shared nationally. The project supports a consistent and equitable provision of care for the learning disability population.

Links have been made at both local and strategic levels within both learning disability and palliative care services. All nine learning disability teams and six hospices within NHS GG&C have access to this project. Strategically the project sits within the current learning disability strategy and although all six hospices are independent in their delivery of care, chief executives have demonstrated their commitment to the project and have released key practitioners for education and development opportunities. The project regularly reports through the palliative care Managed Clinical Network and at the Health Inequalities Network.

Project model

The project model has three main elements all underpinned by partnership and collaborative working and aimed at addressing the challenges identified during the scoping exercise:

Education
Education has been a crucial component of this project. A variety of educational events have been facilitated across both services.

Key Practitioners have been identified; this role is held by learning disability nurses and palliative care nurses selected from their respective teams and hospices. They meet regularly to develop skills, knowledge and confidence within a framework of partnership and collaborative working and practitioners have come to realise that they have a shared philosophy of holistic and person-centred care .This concept has ensured that PWLD who have palliative care needs are recognised and better placed to receive more equitable and robust care.

Support
This part of the project had involved:

  • support to establish multi-professional forums promoting education, partnership and collaborative working.
  • support and advice to individual practitioners
  • specialist advice and support for complex cases

A website to augment the project is under construction and will promote examples of best practice and share resources.

Care pathway
The development of a care pathway is an expected outcome of the project. There has been a multi-professional commitment to the project from both specialist services ensuring that the holistic care needs of individuals are considered throughout the development of a care pathway. The care pathway will be underpinned by evidence based practice, and is fundamental in promoting the delivery of appropriate and high quality palliative care for PWLD. The pathway aims to support practitioners across all settings including learning disabilities, social care, primary care; secondary care, specialist palliative care services as well as other contributors.

People with learning disabilities are at the heart of this project with the ultimate aim being to improve their care.

This project was supported by grants from the Burdett Trust for nursing, administered through Help the Hospices, and funding from the Scottish Government.

References

  1. Summerfield C, Gill B. Social Trends 35. London: Office for National Statistics, 2005.
  2. Emerson et al, People with Learning Disabilities in England 2011. Improving Health and Lives: Learning Disability Observatory, 2011.
  3. Emerson E, Baines S. Health inequalities and people with learning disabilities in the UK: 2010. Durham: Improving Health & Lives: Learning Disabilities Observatory, 2010.
  4. National End of Life Care Programme. The route to success in end of life care – achieving quality for people with learning disabilities. London: National End of Life Care Programme, 2011.
  5. Gunaratnam Y, A briefing paper for managers and trustees. Widening Access to hospice care, November 2000.
  6. Institute for Health Research. Estimating Future Need / Demand for Support for Adults with Learning Disabilities in England. Institute for Health Research, Lancaster University, 2004.
  7. McEnhill L. Towards Excellence in Hospice Care. Widening access to palliative care for people with learning disabilities. Guidance and Resources for Professionals. London. Help the Hospices, 2013.

Leave a Reply

Your email address will not be published. Required fields are marked *