For the purposes of this PSP, Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and or neuromuscular system and create functional limitations. A specific diagnosis may or may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include disturbances of movement, cognition, hearing and vision, communication, emotion and behaviour.
This PSP was initiated by the British Academy of Childhood Disability (BACD) Strategic Research Group. One of the key aims of the group is to encourage and assist families, young people and clinicians to identify the research priorities for children and young people affected by neurodisability. A small resource was allocated from the BACD's Paul Polani Fund to run the PSP.
The video below shows Doug Simkiss talking about the PSP.
See news from this PSP: September 2015.
The Childhood Disability PSP Top 10 was published in January 2015.
Mary Busk, who represented the National Network of Parent Carer Forums on the Childhood Disability PSP Steering Group said;
"I am a mum with 3 children, one with neurodisabilities, and the JLA process was a whole new experience for me. It was empowering to feel that families like mine could influence research priorities for children with neurodisabilities. We worked hard to make the case to parent carers to be involved because our time is precious and we need to know what we do is going to make a difference. The final prioritisation genuinely reflected what families wanted and would make a difference to our children’s lives."