The DECODE project, led by Loughborough University and the Leicestershire Partnership NHS Trust, seeks to develop and enhance the care coordination for people with learning disabilities and multiple long-term conditions (MLTCs).
To achieve this, researchers are gathering information from the local learning disability community and using artificial intelligence to analyse healthcare data to find out what conditions are more likely to occur together, and how they change over time.
This information is urgently needed as currently people with learning disabilities have a life expectancy 20 years below the UK average.
Symptoms related to people being physically unwell are sometimes missed due to communication difficulties or a lack of understanding about how a person with a learning disability can present.
There has also not been any easy way to understand and align complex care needs with the patterns of MLTCs of this population, making it difficult to provide effective joined-up care between health and social services.
It is hoped that more Leicestershire residents with learning disabilities and their carers will share their thoughts on what is and isn’t working in healthcare with the DECODE team by attending focus groups and workshops.
The team are particularly keen to hear from:
- Social care workers (including community care roles or managers of care homes)
- Carers (parents, adult siblings, and professional carers), and particularly male carers
- People with learning disabilities from a Black, Asian or ethnic minority background.
To participate in the project, individuals must be 18 or older. For carers, they should be providing care for individuals with learning disabilities who are aged 18+.
Further information on the project and participant eligibility can be found on the dedicated website: www.decode-project.org/public/take-part, by emailing decode@mailbox.lboro.ac.uk, or calling 0116 2954769.