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. We are now writing up our findings into an article to be published in an academic journal. On 20th March 2023 we held a webinar to share the findings with you. Check out our WEBINAR page!