The East and West Midlands Academic Health Science Networks (AHSNs), with the East and West Midlands Associations of Adult Social Care (ADASS), worked collaboratively on a pilot programme in 2021/22, commissioned by NHS England and NHS Improvement in response to the LeDeR (Learning Disability Mortality Review) report.

The LeDeR report highlights the poor health outcomes experienced by people with learning disabilities and the challenges they and their families and carers have in identifying signs of health deterioration early and preventing health problems.

Solutions / actions taken

We brought together local authorities and health colleagues in the East and West Midlands, as well as people with learning disabilities and their families, to test and trial new tools, tech and processes.

By working with people with learning disabilities, their families, and health and care staff, they should have greater confidence and skills to spot where things could be improved and empower them to take action.

The programme was framed within the PIER model of deterioration management. This provided a common framework for the partners to work within, and ensured that consideration was given to where an intervention could be most impactful:

• Prevention: prevent deterioration, safety culture in supported living
• Identification: tools already being used, digital monitoring
• Escalation: structured communication to escalate – both received and heard
• Response: the message has been delivered, is it now being responded to?

Key lessons learned

The programme has generated real collaboration, enthusiasm and commitment from its partners, and the activities, key learning points and recommendations are explained in this programme report and Easy read summary.

The overarching recommendation is to build on the initial learning by extending this programme to include a larger cohort of individuals across a wider geography. Care needs to be given to understanding the process, collaboration, and approaches to measuring a variety of inter-relational outcomes. Co-production is vital to working with organisations who have very different practices, cultures and systems.

Impacts and outcomes from the project

The programme was intended to give a voice to individuals with a learning disability, ensuring they and the people who provide their care, are central to designing and mapping out solutions related to early health deterioration.

The pilot has provided evidence to support national work to improve care and outcomes for people with learning disabilities who reside in supported living environments.

The partners are continuing to share the knowledge and learning from the pilot, with the expectation it may lead to fewer avoidable deaths of people with learning disabilities as an outcome of earlier interventions in the future.

Resources

The resources created through the programme are available to download here.