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Delivering high quality end of life care for people with a learning disability

23 August 2017

A guide has been published providing resources and tips for commissioners, service providers and health and social care staff caring for people with learning disabilities at the end of life.

The extent and impact of inequalities on the health of people with a learning disability have been well-documented over the years. Research indicates that people with a learning disability are three times as likely to die early than the general population. They are also more likely to experience poor general health, and to have high levels of unmet physical and mental health needs. Health inequalities for people with a learning disability also extend into palliative and end of life care.

The guide states that in May 2016 the Care Quality Commission (CQC) published a thematic review into inequalities in end of life care which identified that ‘people from certain groups in society sometimes experience poorer quality care at the end of their lives because providers do not always understand or fully consider their needs’. It identified people who have a learning disability as one such group. 

The Confidential Inquiry into premature deaths of people with a learning disability (CIPOLD) found that for many people with a learning disability, who were dying, end of life care was not coordinated and the support for the person and their families could have been improved. It also identified that people with a learning disability were less likely to have access to specialist palliative care services and opioid analgesia than a comparison group of people without a learning disability. Other research has suggested that hospice, palliative care and end of life care professionals report limited contact with people with learning disabilities and a lack of confidence in working with this group and understanding their needs.

This ‘top tips’ guide aims to support commissioners, providers and clinicians to reduce inequalities in palliative and end of life for people with a learning disability, focusing on ‘The Ambitions for Palliative and End of Life Care’. These six ambitions provide a framework for national and local health and care system leaders to take action to improve palliative and end of life care. Developed by 27 organisations across the palliative and end of life care system, these ambitions set out what high quality palliative and end of life care looks like. The ambitions call on leaders from every part of the health and care system, and the wider community, to put the framework into practice.

This ‘top tips’ guidance has been developed by NHS England in association with the Palliative Care for People with Learning Disabilities (PCPLD) Network. The development process involved consultation with Public Health England and a range of commissioners, providers and professionals working within palliative and end of life care and learning disability settings. People with lived experience have also helped us to develop the guide. 

Access the guide here

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