The proposed record, which is a voluntary measure and would be written from the child's perspective, is closely linked to the Orange Book, the parent-held 'unified health file' developed by Cornwall Partnerships NHS Trust. It will travel with the child to school, respite care and hospital so that all professionals and carers have the latest details of the child's special needs.
Wales' version of the Orange Book will be piloted in selected sites from the end of this month and will be evaluated through focus groups involving parents and children. The Welsh National Assembly said last week that the results will be sent to all local health boards, NHS trusts and local authorities for comments.
The demand for a family-held record emerged from the consultation on the NSF conducted among parents in Wales by Contact a Family, a charity that helps families with disabled children. As a result it has now become a service and financial framework target for 2004-05, that all disabled children in Wales with complex needs have a national family-held record, although it will be up to the parents and child to decide whether they want one.
Keith Bowen, manager of Contact a Family in Wales, said, 'During the consultation, parents felt very strongly that it would be helpful to have hand-held records which they could keep and take to each appointment to avoid repeated tests and duplication.' He said that quite often, children with complex needs who visited more than one hospital might end up being weighed and measured more than once a week.
If the Wales Orange Book mirrors its Cornish counterpart, parents will be responsible for filling in and updating the A5 book, and it will differ from the red book issued for babies, as it will be up to the parents and child to control the information in it.
The Cornwall Orange Book, which was initiated by the county's health action zone, is now being used for children attending respite centres and special schools.
It is aimed at children with complex needs or a learning disability and has sections for a child who is being tube fed or has epilepsy.
A new edition of the book will have removable inserts so that it can be tailored more easily to the specific needs of individual children, including those with Autism Spectrum Disorders or those on oxygen therapy.