My petition was heard by the Public Petitions Committee on the 17 of March 2017.
My petition calls for a National Clinical Pathway and specialist services for adults with CP. I have met with the Minister for Public Health and Sport in March. This meeting was encouraging however, the Minister and the Deputy Chief Medical Officer for Scotland want to develop local pathways through the Joint Integration Boards (IJB's) for health and social care. I am very concerned with this approach because who will enforce the provision of specialist services in the local health board? Many health boards are struggling financially and may not prioritise adult CP services.
Secondly, there are no specialist consultants in Scotland that specialise in CP in adults. There are neuro physios but in my experience the know very little about cerebral palsy in adulthood and can do more harm than good! There is a skills and knowledge gap within the NHS. This has to be resolved because adults with CP deserve a specialist service and support from the NHS so that it enhances the person's quality of life and they are able to maintain physical function and ultimately their health.
Thirdly, in the evidence session the government talked about "transition to adult services" there is no transition because there is not a specialist service on the NHS for adults to transition to. It is the same across Scotland. While I welcome the development of a national framework for adults with cp this needs to be complemented by a national approach/ pathway that provides high quality care and continuity of care to the 15,000 people with CP in Scotland. Paediatricians and other members of the multi-discipline team for example Allied Healthcare Professionals involved in child cp need to be consulted. Physio is a small part of the health needs of an adult with CP. Many need input from neurologists, orthopaedics urology, speech and language therapy and orthotics to name a few. Adults with cp do not stop being disabled when they became 18 years old. It is important that the profile of cp in adults is raised on a national basis within the medical profession. I will continue to campaign for better care for adults with CP and I am in it for the long haul! I am passionate about this issue and will raise the profile of cerebral palsy in adulthood. If you want to watch the Public Petitions hearing at the Scottish Parliament here is the link - youtube.com/watch?v=tWAy3Yp.... My petition is considered at 33.13. I would appreciate any feedback you may have and any experiences you wish to share. I would like your voices to be heard. Please leave any comments below. I look forward to working with the Scottish Government in the coming months to help improve the lives of adults with CP.
