Agenda item

27.1     The Board considered a report on the Sussex Learning from Lives and Deaths (LeDeR) annual report for 2023/24. The report was introduced by Edel Parsons, Senior Reviewer and Programme Lead, LeDeR, NHS Sussex. The report sets out the service improvement programme for all people with learning disabilities and those with an Autistic Spectrum Condition (ASC) without a learning disability.

27.2     Stehen Lighfoot thanked Edel for the report and asked how Sussex compares with other systems around the country. Edel Parsons responded that Sussex sits within the top five Integrated Care Boards (ICBs) as measured by the two key performance measures. It is not a requirement to report on service improvements, however the National Service Lead has recognised the services improvement system in Sussex as good practice. There is a Sussex Learning Disabilities and Autism Health Inequalities and Partnership Board, which is representative of Integrated Care System, and the themes within LeDeR define the workstreams of this group which meets every two months. There is a piece of work around tabaco dependency which is about to be put out as a result of LeDeR’s work.

27.3     Mark Stainton commented that the report highlights the learning from deaths and the learning that has taken place. There has been a 10% increase in reportable deaths as a result of this process and asked if this was due to an increase in awareness or whether there was another reason that accounted for the increase. Also, this is the first full year that people with autism have been included in the report which shows there has only been eleven deaths. Mark asked if this was representative and whether awareness was high enough on the need to include people with autism in reportable deaths.

27.4     Edel Parsons responded that the number of deaths has seen an increase due to greater awareness and there has been a request for national communications on this issue. For people with autism to be included within the figures they need to have had a formal diagnosis. This has meant that some reported deaths have been outside the scope of the report. There is a need for more communications to raise awareness that people with autism without a learning disability should be included in reportable deaths (e.g. with Learning Disability Partnership Boards). There is also a need to ensure more people are on GP learning disability registers, which is the focus of a current piece of work with primary care colleagues. Generally, there has not been a sudden increase in the number of deaths reported and the increase has been more incremental in nature.

27.5     Darrell Gale thanked Edel for the report and commented that it was important to have information on health inequalities as well as service improvements. The inequality in life expectancy and healthy life expectancy between people with autism, neurodiversity and a learning disability and the rest of the population has been a concern for a period of time. The LeDeR process really helps us to get an understanding of the issues, and the service improvements needed. He thanked Edel for the collaborative work with the Public Health Team around linkages with suicide prevention and self-harm, which has a higher incidence than in the wider community.

27.6     Simon Kiley, Head of Evidence & Insight, Healthwatch East Sussex commented that the report is information and gives a thorough overview of the activities being undertaken to address health inequalities. He commented that there are disparities around ethnicities and how this would be picked up inside and outside the LeDeR programme. It would also be good to explore the linkages between some of the themes in the report such as around cancer and autism and the work on the JSNA with a view to informing other services and service areas. Edel Parsons outlined that it is important to look at intersectionality in the work that is undertaken. Also, there is a large number of people in Sussex who are placed out of area from other local authority areas, and particularly from London Boroughs who may be from minority ethnic groups, which may have implications for services.

27.7     The Board RESOLVED to note the publication of the Sussex Learning from Lives and Deaths (LeDeR) annual report for 2023/24.