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Breaking down barriers to accessing palliative care - #WeLDNs
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Hosted by WeLDnurses using #WeLDNsThis chat is guest hosted by @PaulaHopes1 @ElizabethFair74
This week WeLDNurses are joined by Elizabeth who is a learning disability nurse of 23 years post qualification, Elizabeth is a lead community nurse in south wales with an interest in death and dying and ensuring a person with a learning disability has a person centred and dignified death.
Elizabeth has completed a literature review on the barriers to screening, support and palliation in cancer and possible solutions for people with learning disabilities and wants to explore the recommendations from the dissertation through hosting a twitter chat to ascertain others experience in this area to help formulate future research proposal.
During the chat, Elizabeth is looking forward to exploring these issues with the community and generating some discussion about people’s views and experiences, some of the thoughts she would like to explore are as follows
What is your experience of people with learning disabilities being prepared for death and dying?
Tuffrey-Wijne, et al (2016) recommended that there should be a continuous focus on addressing the quality of services for end of life care including collaboration and training across services including palliative care and learning disability services to obtain robust person-centred end of life care. What experience do learning disability nurses have when using advanced care plans for people with learning disabilities. Did it improve partnership working? Did it improve the quality of end of life care? What about for people without capacity? What is your experience of people with advanced care plans which is done in their best interest?
What is the experience of learning disability nurses using Tuffrey-Wijne ‘Breaking Bad News Model’?
Elizabeth is keen to discuss the ethical issues associated with breaking bad news, does using the breaking bad news model help with ethical decision making? Can the model be used for other ethical decisions? Eg when to introduce discussions regarding advance care plans?
Has any learning disability nurses used the tool ‘PALLI’ to decide if palliative care is required? How effective was it in practice?
Below is some further reading if people would like to review before the chat, we look forward to being joined by Elizabeth and the community to discuss this sensitive and important topic together.
Brownrigg, S. 2018 Breaking bad news to people with learning disabilities: A literature review. British Journal of Learning Disabilities
Dunkley, S and Sales, R. 2014 The challenges of providing palliative care for people with intellectual disabilities: A literature review; international Journal of Palliative Nursing, 2014, Vol 20 No 6, P279 – 284
McLauglin, D, Barr, O, McIlfatrick, S and McConkey, R 2014 Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: A mixed methods study; Palliative Medicine, Vol. 28(10) 1213-1221, SAGE
Tuffrey-Wijne I 2013 A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, 27(1), 5-12
Tuffrey-Wijne I and Rose, T 2017 Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study, Journal of Intellectual Disability Research, 61(8), pp 727-736
Vrijmoeth, C, Groot, CM, Christians, MGM, Assendelft, WJJ, Festen, DAM, Vad der Rijt, CCD, Van Schrojenstein Lantman-de Valk, HMJ, Vissers, KCP and Echteld, MA, 2018 Feasibility and validity of a tool for identification of People with intellectual disabilities in need of palliative care (PALLI). Research in developmental disabilities, 72, pp 67-78.