In the UK there are more than 1.5 million people with an intellectual disability. Many experience health inequalities, have a lower life expectancy, and die avoidable deaths (Emerson, Baines, Allerton, et al., 2012). Despite Advance Care Planning (ACP) being an essential part of palliative care, health care professionals frequently avoid end of life conversations with people with intellectual disabilities (Voss, Vogel, Wagemans, et al., 2017).
Aims The primary aim is to address inequalities and include people with intellectual disabilities in ACP. Secondary aims were to: increase ACP discussions, co-develop education, and improve community awareness.
Methods The project steering group developed four workshops: (1) All about me. (2) Who and what matters. (3) Choices and wishes. (4) Legacies.
Online art ACP workshops with reasonable adjustments
Co-delivered online education
Pilot led to NHS Charities Together funding for qualitative research, education and art workshops for people excluded by identity, culture, ethnicity or race.
Results ‘It’s great how the group shared things. I felt safe to do that.’
‘If you’re cynical about what art-making adds to health-based discussion, this project will challenge that cynicism.’
Conclusion It is important that people are supported to identify end of life wishes (PCPLD Network & NHS England, 2017). ‘No Barriers Here’ increased awareness of the challenges people with intellectual disabilities experience and how using a creative approach can improve conversations.
Please note an easy read version of this abstract is available from the first named author.
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