National Network of Parent Carer Forums

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Paediatric Disability Data Project

May 29, 2014

We could not have produced a glossary of terminologies that describe the multi-faceted complexity of disabled children and young people without parent involvement. Having a parent in the development group kept us all focused on the task in hand and meant that the final glossary is comprehensive and clear to understand, capturing not only diagnoses, comorbidities and aspects of functioning, but also important barriers to participation and quality of life as experienced by families.

Parent involvement in the work of the British Academy of Childhood Disability: Having parents involved in all aspects of the work of the executive of BACD as equal partners is completely invaluable. Parents keep us grounded in what really matters for families with disabled children and young people. The perspective of parents is really important when BACD comments on national guidance including from government and NICE. We are indebted to the National Network of Parent Carer Forums and to the individual parents who give so very much of their time and energy to the BACD, in working together towards better outcomes for all disabled children and young people.

Parent involvement in Disability Matters: Disability Matters is a programme of eLearning resources in development, funded by the Department of Health as an outcome of the Winterbourne View review. Our goal is to produce informative and inspiring resources, that will positively challenge the attitudes of everyone who may work with disabled children and young people. It would not be possible to produce resources that give voice to disabled children, young people and their parents without co-producing them in partnership with disabled young people and parents. Young people and parents are equal partners at all levels of the programme and we are indebted to them all for their contributions.

Heartfelt thanks to all the parents who contribute to the various workstreams. Together we can make a positive difference that matters!

– Dr Karen Horridge, Consultant Paediatrician (Disability)

Download a copy of the Glossary of Terminologies here.                                                          Download a copy of the Paediatric Disability Data Project report here.