Julia Melluish with her son Harrison

Childhood disability research funded for six more years

Families who care for disabled children have welcomed the news that a group that specialises in childhood disability research will continue to receive funding to take it through to 2019.

The Peninsula Cerebra Research Unit (PenCRU), based at the University of Exeter Medical School, will receive £796,303 from Cerebra, a national charity for children and young people with neurological conditions.

PenCRU works with families across Devon, and is at the forefront of childhood disability research.

PenCRU involves families affected by childhood disability as partners in all aspects of their research and related activities. This ethos is central to the unit’s success. The team is keen to welcome new families to become involved; for instance, by making suggestions of issues that, if addressed, could make a real difference to disabled children and their families.

Recent research topics covered by PenCRU include: evaluating peer support for parents of disabled children; reviewing complementary therapies for ADHD; improving communication with disabled children in hospital; and promoting positive attitudes towards disability in schools.

PenCRU runs a Family Faculty group of interested parents and carers who receive emails and a quarterly newsletter keeping them updated on ways to get involved in projects, training and opportunities to meet other parents with similar experiences, and family social activities. PenCRU is also establishing a group for disabled young people to have a voice in their work.

Dr Chris Morris, who heads up the team at PenCRU, commented: “It is great news that we are receiving continued support from Cerebra, which reflects the impact of our work and the important role that families of disabled children have in influencing everything we do. We are looking forward to using the funding to continue to build the partnership we have developed with families and to increase the number of families with whom we work. We believe this is crucial to maintaining the relevance and usefulness of what we produce in our research,.”

Julia Melluish, from Paignton, is mother of six-year-old twins Cooper and Harrison. Harrison has cerebral palsy. He is registered blind and has severe developmental delay, a type of learning disorder. She first found out about PenCRU four years ago, and said: “When you become a parent to a severely disabled child, you lose yourself. You find yourself suddenly immersed in a world you know nothing about. When I found out about PenCRU, I had just reached a point where I had stopped feeling so desperate. I wanted to learn everything I could to empower myself, and to become a better parent to Harrison. Being part of PenCRU meant I was using my brain, and I was regarded as having expert knowledge. That was so important for me personally.”

Bel McDonald, from Exmouth, is the mother of 14-year-old Fergus, who has Down’s Syndrome. Bel has been involved particularly in PenCRU’s research on parent peer support, and has attended various other meetings. Bel said: “As a parent carer you can become isolated from professional life and it is very easy to feel under-involved, which can really dent your sense of wellbeing. Your life can take a completely different path to the one you planned. At the PenCRU family forums, all input is valued and everyone is made to feel extremely comfortable. That gives a really meaningful boost, and we’re so lucky to have it on our doorstep.”

Anyone interested in finding out more about PenCRU can visit www.pencru.org for more details on the programme of practical research that aims to improve the health and wellbeing of disabled children and their families.

Becoming a member of the PenCRU Family Faculty does not commit families to anything other than to be kept informed about events and updates, and opportunities to get involved. PenCRU is aware that families of disabled children often have complex lives, so families can be involved at a level that suits them, and can participate as much or as little as they choose without needing to explain. Families can find out more, sign-up online or get in touch by email: pencru@exeter.ac.uk or call 01392 722968. 

As well as support from Cerebra, PenCRU is also supported by the NIHR Peninsula Collaboration for Leadership in Applied Health Research and Care (PenCLAHRC).

Date: 1 October 2013

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