Involve Me: Increasing the involvement of people with profound and multiple learning disabilities (PMLD) in decision-making and consultation

involve me cover

People with profound and multiple learning disabilities (PMLD) are some of the most excluded in society. The recent guidance from the Department of Health (Raising our sights) suggested that services could do much better in involving people with PMLD in decision making.

The Involve Me project (a partnership between the Renton Foundation, Mencap and BILD) worked with four sites, using different creative approaches to involvement.

The project set out to discover the common messages about what works when getting people with profound and multiple disabilities more involved. The project found that, there were a number of consistent messages about how to involve people.  These included, sharing interests, having fun, interaction and staff support.

The project identified 8 key messages about involvement:
• Know the person really well
• Take lots of time
• Don’t make assumptions
• Be responsive to the person
• Be creative and try out new ideas
• Learn from what the person ‘tells’ you
• Act on what you learn
• Help the person recall and share things about their life

You can download the full report here as a pdf
Read the project evaluation as a pdf
The Involve me website with video clips and information

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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