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Other useful links

Here are some other useful links and resources for end-of-life care planning with people with learning disabilities that you might find helpful. We have split them into two categories: Guidance documents and staff training resources. The resources were found through our scoping review and survey, which you can read more about here.

Guidance documents

Universal Principles for Advance Care Planning (ACP)

By NHS England and NHS Improvement, with a range of organisations involved as well (2022).

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

By the PCPLD Network and NHS England (2017).

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The ADVANCE Toolkit

By University of Surrey with Kent, Surrey and Sussex Health trusts (2027)

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The Route to Success in End of Life Care

By the NHS National End of Life Care Programme (2011).

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Staff training and support

Doing It My Way

By St Anne's Community Services (2016).

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Cards on Life, Death and Loss

By Jo Giles in collaboration with Claire Lam, Paradigm (2020).

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Talking End of Life...

By The University of Sydney, Keele University in the UK, and Unisson Disability (2018).

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Advance Care Planning

Presentation by Phoebe Mooney, Advanced Care Planning Nurse for people with learning disabilities (2021).

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