Improving access to palliative care for people with a learning disability

Categories: Care.

People with a learning disability are one of the most disadvantaged groups in the UK. If we do not help them to plan for end of life then they will most likely die in a place not of their choosing and we, as their carers, will have failed them when they most need us and are at their most vulnerable.

In the UK, the term ‘learning disability’ refers to a range of developmental disabilities or conditions that are almost invariably associated with more severe generalized cognitive impairment. People with such disabilities are often not seen as full citizens of society which results in:

  • labeling and social exclusion
  • being devalued
  • poorer healthcare and health than the general population.

Multi-disciplinary team meetings

In 2009 very few service users with a learning disability at the end of life were known to any specialist palliative care teams. Likewise, end of life care was an unfamiliar area to many professionals caring for service users with a learning disability.

To help change this, a number of nurses from the West Hertfordshire Community Learning Disability and the Health Facilitation teams agreed to become champions for end of life care for service users with a learning disability, and together we established a monthly multi-disciplinary team meeting (MDT).

Access to training was also agreed by the local cancer network, and a team of nurses representing the learning disability and transitional care teams presented at the cancer network palliative care away day.

At the MDT meetings we discuss specific service users’ needs and help to facilitate coordination of their care by developing an action plan, as required.

The MDT is a collaborative, cross-agency, multi-disciplinary clinical care meeting and uses national pathways and tools to help deliver an improved service. The meetings aim to ensure good communication and smooth transfer of patients between the acute, community and palliative care settings. 

The MDT quickly expanded to also include a transitional nurse coordinator, young people’s health transitional service, as well as representation from the West Herts Hospital Trust Palliative Care and Safeguarding Vulnerable Adults teams. This wider area of expertise means that many more service users can be included.

We encourage a reflective approach, where concerns as well as good practice/expertise can be shared, and are happy to advise other teams and welcome other staff if they wish to join us to discuss a service user’s care. We learn new skills and gain knowledge from each other and have used this to develop a palliative care resource pack that includes tools for care planning and symptom assessment.

Resource pack

The need for the pack was highlighted as there were concerns around the failure of some clinical teams to identify that service users were approaching the end of their lives. The pack includes sections for both baseline and review assessments which can be used to monitor rates of change in a service user’s condition, or symptoms, to highlight additional needs and ensure timely referral to appropriate services.

The pack also includes a glossary and a section covering other resources such as useful numbers and websites. It is hoped that it will be helpful in optimising care for all service users.

Today, the MDT is reflecting on the progress made since 2009, but also looking forward to new challenges and creating a better provision of services for people with a learning disability.

Dr Ruth Brown won the Linda McEnhill Award in 2012 in recognition of “the excellent work she has undertaken over the last two years in supporting the specialist learning disability nurses in Hertfordshire to support people with a learning disability in the last year of their lives.”

If you want to find out more about the work of the team in Hertfordshire, email Ruth at

Leave a Reply

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