People Living with physical or intellectual disabilities

The content and key messages on this page have been developed in collaboration with clinicians, campaigners, people accessing palliative care, and their caregivers. You can use this content in your social media and as part of your World Hospice and Palliative Care Day activities.

WHPCA would love to hear about any projects that are working to create equity in access to palliative care for people living with physical or intellectual impairment. Please share them with us by contacting our Communications Manager.

This section was provided by Gemma Allen and Prof Irene Tuffrey-Wijne  who chairs the Palliative Care for People with Learning Disabilities Network www.pcpld.org

They have worked hard over the past year to draw attention to the needs of this population, mostly through hosting a series of monthly webinars, all of which are available on this YouTube channel

Key messages:

• Listen! Listen to the person, to their family, to the carers. Try to understand their life story. Try to understand how their current ill-health or deterioration fits in with that. Discover where people’s strengths lie. Many people with disabilities can be remarkably resilient.
• Always put the person with intellectual disabilities central. Even if they cannot understand or communicate in words, talk with them and include them.
• The family and/or care staff team are part of your team. They will need your support, but you also need them to help you understand the person’s needs and communication.
• Keep your communication open, honest and straightforward. No jargon! Most people with intellectual disabilities (like most of the population) cope best with changes in their lives if they know and understand what is happening.
• Find out what the person is like when they are happy and content. Has this changed? This will help you to know when something is troubling them. Work with the person and those who know them well, to get to the bottom of what is causing the distress – whether that is pain, anxiety, or anything else.

Gemma Allen who is the Inclusion and Diversity Lead at St Mary Stevens Hospice in Stourbridge, UK has written this interesting article for ehospice on how creative workshops for people with intellectual disabilities help them explore feelings of loss. Read it here.

You can also sign up for the Palliative Care for People with Learning Disabilities Annual Conference in September here.