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Hackney Ark Education project CP Summer 15

The participants attended a series of sessions over the summer holidays. Sessions were focussed on teaching the young people about their diagnosis in detail. Input was given from psychology, speech and language therapy, as well as adults with CP. 

In response to feedback from the participants, the project was extended to open up a dialogue with some of the younger children with CP and they were asked to contribute to the 2 short opinion films which will also be screened this evening.

How? A variety of non-traditional teaching methods and styles were used in order to engage with the young people and help consolidate their knowledge. The young people were encouraged to take part in different exercises and to create multimedia content 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. Workshops were provided by Medorite (a youth led film service in Hackney)  and the participants learnt about the basics in film making and equipment. The young people both filmed and interviewed adults with CP and worked together on designing the content and filming of the documentary working towards obtaining an AQA qualification.

Why? 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 and none of the children or young people asked could demonstrate and in depth understanding.

Emerging evidence suggests that a good understanding of a given diagnosis enables better self management and health outcomes into adulthood.  Young people in discussions with therapists expressed a desire to better understand their condition. 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. 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.

Cerebral People

Outcomes: We had excellent attendance to all sessions during this project. The young people taking part showed full engagement and dedication and many came independently to the group, often giving up 2 afternoons per week of their summer holiday. They all reported enjoyment in the project and have succeeded in making an invaluable resource for the department to show to other young people and their families. In a survey monkey questionnaire, all participants said we should run this project for other young people with CP. Participants have also set a personal therapy goal to work on in preparation for adult hood.

Contributors: We received a huge amount of assistance and support from the local community and believe this project helped to connect the young people with different agencies within it whilst also improving links between health and these agencies.

Namely: The youth hub at Forest road provided a free venue for all sessions and space to store our work.

  • Mediorite provided free workshops, equipment and a fun day of filming.
  • The Curve garden loaned us their lovely garden and greenhouse free of charge for the filming day.
  • ‘We like Static’ hand made us templates so that we could graffiti our thoughts and Bootstrap gave us a wall to decorate.
  • Anna from YPFI, Luke Brook, Shamsun from Hackney Ark, Blessing Odukoya and Tim Renkow gave up their time to come and talk to the participants and agreed to be interviewed about their experiences working and living with a disability.
  • The general public were very interested in finding out about the project when observing the filming day which began to open up a dialogue about disability with in the local community and raising the positive profile of Homerton Hospital NHS foundation trust.

This project was so successful that the transition therapy role is being reviewed to offer more targeted work rather than the traditional specialist 1:1 model if intervention. We are also exploring more modern methods of teaching using multimedia interactive mediums.

More information

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Watch the trailer 

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Cerebral People

Feedback

‘It was great seeing the children take ownership of the project. CP was explained well and was clear to understand. It would be a good idea if the video was shown in schools for peers to gain an understanding of what the condition is’
Parent

‘This was great idea for the younger children to understand they are not the only ones with CP and that it is not an illness, but a part of them. Thank you.’
Parent

Child Feedback

‘How many stars do you give the 3 films? I give 5/5’
Child

‘Absolutely amazing! Really emotional and informative. This should be rolled out in schools and youth services for training for workers and young people.’
Professional

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How does it feel

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What we think

'I wanted to say how good I thought the film was last night. I think ***** gained so much from it and I think seeing all the professionals that he works with being there made such a difference.'
Parent 

Professional feedback:
Key working team: '
Hi I just wanted to say well done to you guys and all the young people that participated in your project. The films and the event yesterday evening were fantastic.'

Education: 'Hi all,I just wanted to say how much I enjoyed the film screening last night. What a terrific piece of work. Well done to all.'

Royal London Hospital: 'Loved the film last night!. Really well done. Maybe good for APCP conference next year??'