Building Cerebral People An education project for young people with Cerebral Palsy By Maxine Darby and Catherine Lomas Dec 2015

What needed improving? Transition services: Young people’s understanding of their own diagnosis: Anecdotal Research and clinical guidelines Only 22% of teenagers with Cerebral Palsy (CP) were able to give any explanation of their diagnosis and none could demonstrate and in-depth understanding (ARK audit) User feedback Anecdotal – Therapists working with the young people felt that in many cases, a lack of in depth understanding led to less well informed decision making, decreased engagement in services and unrealistic expectations. Research and clinical guidelines Emerging evidence suggests that a good understanding of a given diagnosis enables better self management and health outcomes into adulthood. . NICE guidelines are due to be released in February 2016 and draft provision of these guidelines discuss the importance of self-management of condition and the importance of being able to understand ones condition in order to achieve this. The ‘Moving on well’ paper 2008 (Department of Health: (2008)Transition: moving on well : a good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability) also discusses the inclusion of condition specific information sharing in effective transition work with young people with disability. HARK Clinical audit In a service audit, we concluded that only 22% of young people accessing therapy services with Cerebral Palsy were able to explain their diagnosis to others in brief and none of the children or young people asked could demonstrate and in depth understanding. User feedback: Young people in discussions with therapists expressed a desire to better understand their condition.

What did we do? 8 week structured educational programme Learning by doing – Innovative and inclusive approach Multi media content relevant to this generation Utilising local resources and opening up a dialogue within the community Motivational factor!!! 8 week educational programme: As part of a structured 8 week programme the young people attended teaching sessions at a local youth centre which focused on educating them on CP – diagnosis/causes of/presentation/prognosis/goals of therapies as well as improving their awareness of issues around the transition to adulthood when living with a disability. The young people taking part also had the opportunity to meet and interview older adults living with CP as way of exploring for themselves the direct experiences of adult life with a disability. The young people also had time to learn how to use multimedia and recording equipment in order to express their knowledge and views. After 8sessions focusing on this matter group participants then made an educational film about CP with a local film company Learning by doing: Innovative approach – using as a platform to educate others and encouraging their learning or physical difficulties . A variety of non-traditional teaching methods and styles were used in order to engage with the young people and help consolidate their knowledge. Multi media aspects: The young people were encouraged to take part in different exercises and to create multimedia content (ipads / stop frame animations / grafitti!) to communicate with us and each other, to explore their questions, teach others what they had learnt and think about what else they need to know as they prepare for adult hood. As such this project was a new way of educating young people about their condition. Instead of giving information leaflets or directing them to websites or indeed speaking only briefly to them in their PT appointment - this project provided intensive and comprehensive teaching sessions which set them on the road in becoming experts in their condition and its management. It challenged the young people to express themselves, ask and answer questions. The young people at the end were much better able to set their own goals as they had explored the steps they needed to take in order to gain more independence. Utilising local resources and opening up a dialogue within the community?: Interviews were set up with young adults living independently with CP. Workshops were provided a local film company in Hackney and the participants learnt about the basics in film making and equipment. The young people both filmed and interviewed adults (one was an ex service user). Utilisation of youth centres and cafes within the community to provide venues – everyone was happy to give their time or space for free once they understood the purpose and this has strengthening links and public awareness. Motivation: End goal – Film produced / something cool / something they are interested in they are not doing at school / AQA qualification / Something worth giving up their spare time for in the holidays.

Outcomes and clinical impact? Film produced and premiered. – 50+ people at premier Survey monkey Personal goal set Links established with local community and young adults Film now going to be shown at SENCO training days with YP representatives Very positive Parent feedback Featured in Hackney Gazette / Hackney Today / possibly in CSP magazine FRONTLINE. Social media uptake Other trusts asked for a copy to educate doctors and AHPs Transition therapy role reviewed to do more targeted work Adapt training to offer a parental course. Film produced and premiered. – 50+ people at premier including orthopaedic surgeons / paediatricians / educations / representatives from MDT / therapists form other trusts / local press / parents / other younger CYP with CP. Useful resource going roward. Survey monkey – 100% or participants found the project useful and thought we should do it again for other teenagers with CP. Group participants were able to set a personal goal to work on in therapy that they felt would help them become independent young adults. Links established with local community and young adults: offered the venue for future projects / many of the people who helped form the community came ot the premier and have posted the film on their social media pages. # Social media – lots of shares and comments – SCOPE / hemi help / Dream flight / celebrities

At the beginning of the group no one could set their own goal At the beginning of the group no one could set their own goal. After – they were all able to set one

https://vimeo.com/146405148  Enjoy the film