This written evidence by Gemma Cook, gathers personal perspectives from the combined position of being a qualitative academic researching the lived experiences of adults with Cerebral Palsy; a policy expert in international disability human rights; and a neurological physiotherapist who has worked in specialist clinics for adults with CP. The evidence states that:
- Service re-design, in particular around transition, needs to take an intersectoral approach (across healthcare, education, vocational training & employment, and socialisation & other leisure activities) putting streamlining of services as a top priority. To work towards this, all stakeholders involved in improving policy around transition should avoid working in siloes.
- Services for people with Cerebral Palsy need to be lifelong, and take a life-cycle approach, and not be designed around fixed transitional time points.
- Some suggest that having a central hub for signposting to services would make a good model. A central hub could include an email service, where people with CP can have open access to remote professional guidance with problem solving, supporting them in navigating often complex lives.
- Evidence suggests that where good physiotherapy services are found they are highly valued, in particular those that take a person-centred partnership approach. Some suggest that physiotherapy could play a central role in such service hubs.
- Persons with CP, in particular young people with CP need to be at the centre of all service design. They should be involved in every step of the decision-making process, from the very beginning to the very end.
- Service improvement for CP should be specific to the needs of people with CP, and not compared to other conditions, or modelled to services that have been set up for other conditions.
- Services should be designed with in-built flexibility to accommodate the needs of the individual and their needs change through time.
Read the full evidence here