Agenda item - Learning from the lives and deaths of people with a learning disability and autistic people (LeDeR) 2023-24 report

Report of Sussex Integrated Care Board (copy attached)

61.1 This item was presented by Edel Parsons (NHS Sussex).

61.2 The Board heard from Edel Parsons that Learning from the Lives and Deaths of People with a Learning Disability and Autistic People (LeDeR) has been operational since 2017. It was heard that the programme is a health inequalities programme looking at reducing known health inequalities within the aforementioned population.

61.3 The Board heard and considered the annual report provided, including the performance, outputs, and continuing progress from the programme, including a workstream around suicide prevention.

61.4 Councillor Grimshaw asked a question around the high figures of people with pneumonia. Edel Parsons responded, outlining the work being done.

61.5 Councillor Grimshaw asked a question around the sensory and emotional needs of people with autism and whether there is a fear within some people with autism of seeking medical professional support. Edel Parsons responded to the question, including the development of good educational information and the issues for many autistic people within A&E.

61.6 Councillor Grimshaw asked a question around the lack of safe and quiet spaces within A&E for autistic people and what is being done to support people who require these spaces. Edel Parsons responded to the question, including on how sensory toys have been rolled out and additional training.

61.7 Alan Boyd (Healthwatch) asked a question on health checks for those with a disability, and if targets are being met on annual health checks. Edel Parsons responded to these questions, including stating that campaigns are being rolled out to help support this work and continued improvement. They also commented on the targets. 

61.8 Councillor De Oliveira asked a question around the language of frailty. Edel Parsons responded to this question, outlining the additional work that is to be done around this issue.

61.9 Stephen Lightfoot (NHS Sussex Chair) asked a question on what more can be done in identifying people that are valid and if there is an underreporting issue with some of the numbers of people. Edel Parsons responded to the question, stating that this would be taken away and that it is hoped that underreporting isn’t an issue.

61.10 RESOLVED – that the report be noted and approved.