Cerebral palsy is a group of lifelong conditions that affect movement and coordination, and is usually diagnosed in first few years of a child’s life. Although there is no cure for cerebral palsy, various therapies including speech, physiotherapy and occupational therapy can help improve difficulties with coordination and movement and enable people with the condition to live independently.
Previous research has shown inadequate health and social care provision to facilitate a successful transition of young people with cerebral palsy from children’s to adults’ services when they reach 16. Work by ARC South London researchers has highlighted significant gaps with transition pathways across south London and the south-east, including poor communication between health professionals, young people and their families, and difficulties accessing appropriate support.
This research, which is being led by Susie Turner, a physiotherapist and researcher at Guy’s and St Thomas’ NHS Foundation Trust, will help to understand the needs of the young people aged 16 years and older living with a diagnosis of cerebral palsy in south London and the south-east. The aim is to understand what is needed to develop a successful transition pathway from children's to adults' services, to provide timely, equitable, and accessible healthcare support.
Susie Turner explains: “The failure of the transition pathway means many young people with cerebral palsy and their families either continue to rely on paediatric services or end up being discharged into the unknown. This results in many young people living in south London and the south-east region being left unsupported once they leave children's services.”
Research highlights the challenges faced by individuals with cerebral palsy across their lifetime, especially in regards to worsening pain, the complexity of co-morbidities and the subsequent impact on their quality of life. Without successful transition and access to appropriate adult services this is leading to inequity of care. Cerebral palsy is a lifelong condition and many of these young people are at risk of facing worsening issues as they age without access to the right healthcare support
The researchers will carry out quantitative analysis of a cohort of young adults with cerebral palsy, identified through the Cerebral Palsy Integrated Pathway (CPIP) database aged 16 years and older from 1 September 2022. They will map their current healthcare providers, education and social care support and will describe the demographics and potential health care needs of this population. They will also seek consent to revisit this population in three to five years’ time.
Qualitative research will include:
Evidence from the interviews will contribute to the design of an evidenced-informed model transition pathway, developed collaboratively with professionals, young people and their carers.
This new pathway will then be tested for its feasibility. The long-term aim is to develop, evaluate, and implement with healthcare providers a new, more effective transition and lifelong pathway to support young people with cerebral palsy as they move from children's to adults’ services
The research team will collaborate with neurodisability healthcare professionals across the region in children and adult services; healthcare professionals and individuals with cerebral palsy in Sweden; charities Action Cerebral Palsy and UP – The Adult Cerebral Palsy Movement; and the All Party Parliamentary Group on cerebral palsy.
The project is expected to complete in September 2024.
