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According to the National Institute for Health and Care Research (NIHR) INVOLVE, PPI is defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. The PETAL programme was designed to involve experts by experience such as adults with learning disabilities and family carers through all stages of the programme (e.g., study design, therapy development, the language used, etc.).

Our family advisory group is led by Mrs Vivien Cooper from the Challenging Behaviour Foundation along with 6 family carers. Our learning disability advisory group includes 5 adults with a mild/moderate learning disability and is led by Mr Brendan Leahy from the London Borough of Camden.

We meet regularly (e.g., every 3 months) to discuss our future plans, which might include creating new documents, approaching services, recruiting adults with learning disabilities and carers, publicising our work, etc.ÌýThere was a particular emphasis put on co-designing the PETAL therapy with members of both advisory groups, which took place over seven co-production meetings. The contribution of our PPI advisory groups is invaluable, and we look forward to continuing working together for the remaining duration of the PETAL programme.

Members of our PPI groups