People with learning disabilities (PWLD) may experience inadequate end of life care through services not considering individualised needs (Care Quality Commission, 2016). The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD, 2013) reported that coordination in end of life care was limited and improvements are required.
Aim Establish a regional network for people with learning disabilities, carers, self-advocacy groups, clinicians, care homes, hospices and academics. Encourage discussions, conversations, and positive adjustments around death and dying, working alongside and enabling provision of person-centred care tailored to individual needs.
Partnership with Birmingham City University;
Scoped interest of a regional network via Twitter and ehospice;
Launched May 2019;
PWLD key network members;
Engagement via social media using hashtag #LDEOL;
Pledge cards and world café mind–mapping to collate information.
Results 45 attendees from a mix of backgrounds. 22 additional people requested to join network. World Café questions included ‘How could we better support and include PWLD in our community in living well and dying well?’
‘Empower communities to better support PWLD to get involved!’
‘More community roles, if people are seen, barriers start to break down’
‘Listening and learning from lived experience’
‘Identify gaps, have honest conversations and communicate in a way we can all understand’
‘See the person, not the learning disability’
‘End of life pathways in all areas’
‘Change the culture of ‘Am I allowed to do this?’ and working within own boxes’
‘Great to hear from PWLD about what is important to them’
‘Fantastic network launch, looking forward to the next event!’
Conclusion ‘Continue to advocate good quality end of life care for everyone’. ‘Allow people an open space to hear and understand unique narratives’. Twitter account requested network and share information. Widen network, host events across regional venues. Parallel training opportunities. Set measurable outcomes and write a five year strategy. Develop network charter.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.