Leicestershire residents with learning disabilities and carers asked to help shape the future of healthcare by joining research project

Leicestershire residents with learning disabilities and their carers are asked to share their lived experiences with researchers as part of a project aimed at improving healthcare.

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.

Notes for editors

Press release reference number:

Additional project information:

The DECODE project is being funded by the National Institute for Health Research (NIHR), the research partner of the NHS, public health and social care, started in April 2022. The other academic project partners include the University of Leicester, Swansea University, King’s College London, University of Plymouth, the University of Nottingham, and De Montfort University.

Quotes:

Loughborough’s Professor Thomas Jun, a Professor of Socio-technical System Design, is co-lead for the project. Speaking about DECODE he said: “We are very excited about this collaboration opportunity, working with clinicians and experts in data science, AI, medical informatics, human factors, design, ethics and qualitative research, as well as those with lived experience of learning disabilities. We will be able to demonstrate how AI can create safe, ethical and cost-effective improvement to the quality of life for thousands of people with learning disabilities.”

Co-lead Dr Satheesh Gangadharan, a Consultant Psychiatrist with the Leicestershire Partnership NHS Trust, added: “Moving forward we hope our research will shape how people with a learning disability and long-term conditions are supported in the UK and beyond. The links we have with the National Learning Disability Professional Senate, Royal Colleges, Health Education England, Public Health Wales, NHS England and NHS Wales will enable us to make a real impact and improve the care.”

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