Agenda item

An update and overview of the LeDer work programme which prompts a discussion on how to better improve mainstream services to support people with Learning Disability and Autism to access these.

The LeDeR Clinical Lead presented the overview. It was noted that:

·       This was a very emotive topic as it covered the lives and deaths of people.

·       There were 6 high impact actions, and the key focus within them were:

o   Reduce avoidable mortality.

o   Focus on co-morbidities associated with premature death and DNACPR/RESPECT.

o   Importance of LeDeR reviews.

o   Understand the experience of ethnic minority groups.

o   Improve the accuracy of Learning Disability Registers and uptake of AHC.

·       There had been reduced notification of ethnic minority backgrounds. [DH1] 

·       It was paramount to highlight the individual person that lay behind the figures and data.

·       A case study was presented. It was shocking, but not unusual. 

·       There was an inability to make reasonable adjustments for individuals accessing services.

·       Learning disabilities and Autism needed to be flagged to health providers on systems.

·       Preventing avoidable deaths had required ideas coming through from within the existing system.

·       Improvements had been required in cancer screening, along with earlier screenings.

·       There had been consideration of designing something that would actively encourage those with Learning Disability and Autism to access services.

·       There were 2 important statements from LeDeR that were highlighted. The first was that LLR LeDeR urged the local system to act and enforce the MCA and ensure it becomes intrinsic to everyday care and support to people with a Learning Disability and Autistic people. Secondly, that these individuals were at increased risk of communication or pain being misinterpreted or missed altogether, despite tools having been readily available.

·       Respiratory illnesses had been the leading cause of death in Leicester, Leicestershire and Rutland. Cardiovascular was the leading national cause of death. 

As part of discussions following the overview, it was noted that:

·       The Oliver McGowan training had a direct impact. At the end of December, 9800 individuals had been trained. This training had resulted in more awareness and had connected individuals across health services, and had operated as a gateway.

·       The issue of respiratory and cardiovascular mortality rates was to be taken back to the collaboratives.

·       Work had been done on HPV vaccines and cervical screening for those with Learning Disabilities. It had been important for health professionals and for the education of families to understand how important attendance was.

·       The issue of diagnosis could have been impacting the recording of deaths for those who had Learning Disabilities or Autism.

·       The health outcomes for this cohort had been very different from those of the general population.

·       It was queried whether cancer diagnosis was improving for those with Learning Disabilities and Autism.

·       Pain management tools needed to be utilised so individuals who had been unable to express their needs could have had their needs supported appropriately.

·       There had been issues around reporting. Work had been done on Downs Syndrome but there had not been a means of flagging.

·       Communication had been needed around ethnic minority groups and had there been more that could be done around annual health checks to help reporting.

·       Digital pathways had been needed to manage this issue and it needed to be incorporated into the everyday thinking of what flags appear and where.

Agreed:

The report was noted.