Agenda item - Learning from the lives and deaths of people with a learning disability and autistic people 2024-25 report

Report of NHS Sussex Integrated Care Board (copy attached).

38.1    The report was presented by Tanya Brown-Griffith and Dr Adam Fazakerley. Ms Brown-Griffith explained that the LeDeR annual report had been a national initiative since 2017, requiring local areas to record and evaluate the deaths of people with a learning disability or autism in order to reduce avoidable causes of death and reduce the 20 year health inequality gap between average age of death of people with learning disabilities and autistic people and that of the general population. There has been a decline in avoidable deaths since LeDeR was introduced and good processes are now in places to cascade learning through organisations. However, significant health inequalities remain and there is much more that needs to be done. Dr Fazakrley added that the health inequality gap is a complex problem and one that needs to be addressed across society, not just by health and care services.

38.2    Caroline Ridley asked about the take-up of staff training. Ms Brown-Griffith replied that training is mandatory and includes back office as well as frontline staff. Take-up is good, with more than 95% completion rates, but there are still some gaps that need addressing.

38.3    Cllr Helliwell asked how autistic people are categorised by LeDeR. Ms Brown-Griffith replied that all people with an autism diagnosis are included in LeDeR; there is a differentiation made between people with autism and a learning disability and those with autism but no learning disability.

38.4    Alan Boyd asked about annual health checks and about co-production with people with lived experience. Dr Fazakerley replied that the percentage of people undertaking annual health checks is relatively high, but this can be misleading as people who participate in health checks tend to be those who are best informed about health issues. There is a real need to better reach out to those who do not currently take up the health check offer, and focused work on this is being delivered via local Health Hubs. Ms Brown-Griffith added that there is co-production work being delivered via Neighbourhood Health Teams. Services recognise the importance of engaging with people with lived experience and of adopting a hyper-local approach to service delivery.

38.5       The Chair asked about how attendance for preventative health checks, including cancer screening, varied across the city. Ms Brown-Griffith noted that there is a big push to improve screening dates in the most deprived parts of the city. She offered to provide additional information outside the meeting.

38.6       RESOLVED - the Board noted the information provided in this report; and

 the Board approved the organisations represented on the Board utilising the learning from LeDeR and developing formal internal cascade processes in order to impact on the reduction of the mortality gap for people with a learning disability and autistic people.