In the second part of the study, we will speak to different people about what they think about end-of-life care planning for people with learning disabilities. We will run focus groups with:

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• People with learning disabilities

• Family members of people learning disabilities

• Learning disability support staff from two learning disability service providers: MacIntyre and Dimensions

• Service managers at MacIntyre and Dimensions

• External health or social care professionals involved in supporting people with learning disabilities and/or supporting people with end-of-life care planning (e.g. Community Learning Disability Team, Palliative Care services)

• Representatives from organisations involved in commissioning, assessing and setting strategic priorities for learning disability and/or palliative care services (e.g. Clinical Commissioning Groups, Care Quality Commission, Local Authority Social Services; national strategic leads)

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In the focus groups, we want to find out what these different groups think about:

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• Experiences, worries and concerns about end-of-life care planning for people with learning disabilities

• When end-of-life care planning should start

• Who should start conversations about end-of-life care planning?

• Who should be involved?

• What is the best way to do end-of-life care planning?

• What materials or resources would be useful?

• What helps or hinders end-of-life care planning?

• How things might be different in different cultures and ethnic groups

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The focus groups have now been completed.

 

On 20th March 2023 we held a webinar to share the findings with you. Check out our WEBINAR page! We have also published an article in an academic journal called Palliative Medicine. You can find the article here.