Resources
These are the resources we are looking at with the co-design group (click here to get to know more about what co-design is). The resources were found through our scoping review and survey, which you can read more about here.
The resources are all for end-of-life care planning with people with learning disabilities that you might find helpful. We have split them into four different categories: Guidance documents, staff training resources, resources for people with learning disabilities, and academic papers. If you have thoughts or feedback on any of these, please let us know.
Guidance documents
-
Universal Principles for Advance Care Planning (ACP). 2022. NHS England and NHS Improvement, with a range of organisations involved as well.
-
The ADVANCE Toolkit: A Values-Based Approach to End of Life Care Planning for Young People with Learning Disabilities & their Families & Friends. 2017. University of Surrey with Kent, Surrey and Sussex Health trusts.
-
Delivering high quality end of life care for people who have a learning disability. 2017. PCPLD Network and NHS England.
-
The Route to Success in End of Life Care – Achieving Quality for People with Learning Disabilities. 2011. NHS National End of Life Care Programme.
Staff training and support
-
Doing It My Way - A Comprehensive Guide to End of Life Care for People with Learning Disabilities. 2016. St Anne's Community Services.
-
Talking End of Life... with people with an intellectual disability. 2018. The University of Sydney, Keele University in the UK, and Unisson Disability.
-
Cards on Life, Death and Loss. 2020. Jo Giles in collaboration with Claire Lam, Paradigm.
-
Advance Care Planning. 2021. Presentation by Phoebe Mooney, Advanced Care Planning Nurse for people with learning disabilities.
Resources for/with people with learning disabilites
-
Am I Going to Die? Books Beyond Words. 2009. Sheila Hollins and Irene Tuffrey-Wijne.
-
My plan for before I die & My plan for after I die. 2022. MacIntyre.
-
My End of Life Plan - What I want to happen. 2017. Brandon Trust together with NHS Foundation Trust.
-
My Advance Care Plan. 2022. Health Quality & Safety Commission New Zealand.
-
Accessible Planning Tool - Glancing back, planning forward. 2017. Trinity College Dublin.
-
Preferred Priorities for Care. 2007. Lancashire & South Cumbria Cancer Network in June 2004 and endorsed by the NHS National End of Life Care Programme.
-
My plan for after I die. In press/trial. Dimensions.
-
No Barriers Here - An innovative approach to advance care planning for people with learning disabilities. 2021. The Mary Stevens Hospice, Dudley Voices for Choice, and Art Psychotherapist, Jed Jerwood.
-
Improving End of Life Care for People with Intellectual and Developmental Disabilities - Resource Pack. 2018. Nottinghamshire Healthcare NHS Foundation Trust and Sherwood Forest Hospitals NHS Foundation Trust.
Academic papers
-
McGinley et al. (2021) Advance Care Planning for Individuals With Intellectual and Developmental Disabilities: A State-by-State Content Analysis of Person-Centered Service Plans. Intellectual and Developmental Disabilites. 2021;59;4: 352–364.
-
Noorlandt et al. (2021) Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase. J Appl Res Intellect Disabil. 2021;34:1538–1548.
-
Watson et al. (2017) Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability. J Appl Res Intellect Disabil. 2017;30:1022-1034.
-
McKenzie et al. (2017) “I’m still here”: Exploring what matters to people with intellectual disability during advance care planning. J Appl Res Intellect Disabil. 2017;30:1089–1098.