Health Education England Intellectual Disability programme working across the south of England (formally Kent, Surrey and Sussex) works by supporting the whole workforce (including people and their families) to carry out small co-produced innovative pilot projects to overcome workforce issues that they highlight.
All outcomes from any funded work including toolkits, evaluations are then made freely available to all.
A recent publication is from work carried out by the International Care Ethics Observatory led by Professor Ann Gallagher title “End of Life Care Planning for Young People with Learning Disabilities and their Families: the ADVANCE Framework”.
Professor Ann Gallagher has written a blog summarising the project: https://idhekss.wordpress.com/2018/05/21/blog-launch-end-of-life-care-planning-for-young-people-with-learning-disabilities-and-their-families-the-advance-framework/
It had been highlighted across the region that though there was quite a bit of evidence linked to Adult & Children but there were little to no evidenced that looked at what good might look like for people during transition and on an EoLC pathway. We hope that this helps further develop evidence the base to support positive practice in this area.
We would be really grateful if you would be happy to share this work with your own organisations, mailing lists of groups you chair or are part of, and any social media forums that you participate in.
A tool is only useful if it is known about an if it can be shared with any many people that might need it.
A links to the resources and evaluations can be found at: https://idhekss.wordpress.com/reports/id-hee-project-reports/#6
There are about 40 pilot projects we are currently supporting most of them have been summarised on our updated page if you want to find out what else we are doing: https://idhekss.wordpress.com/updates/