Anna Panton, Childhood Stroke Project Manager in the UK, tells us about the work the project does to support those affected by childhood stroke.
Florentina Meggersee, Dr Anne Gordon (Senior Consultant Occupational Therapist Evelina London) and Anna Panton
How did the project come about?
The Childhood Stroke Project was set up in 2013, and I was lucky enough to start in the Project Manager role at that time. Families had expressed a need for more information, advice and support following a diagnosis of stroke in childhood. The Stroke Association was interested in identifying how best to develop more services and resources for young people and families – and came together with Evelina London Children’s Hospital who were supportive of the project, and offer specialist paediatric neurosciences services.
What are the key issues in your area of work?
Thinking about the parents and young people I have met since 2013 several key issues are apparent:
- · the need for more public and professional awareness of stroke in childhood,
- · the importance of information and resources tailored to children and young people,
- · the value of practical support and advice when navigating health/social care and educational systems,
- · the significance of emotional and peer support.
There is also a priority of providing ongoing access to therapy for young people – particularly because the full impact of early stroke may take some time to become clear.
It is not uncommon for families to get back in touch with our Support Service after some time has passed – as new rehabilitation support needs arise – physical, cognitive and psychological.
What have been some of the outcomes of the projects?
The Childhood Stroke Project has now set up a national Support Service – which is accessible to anyone in the UK. The support service offers information, advice and emotional support, and helps family’s access therapy and community based services. We also offer information sessions for schools, and work with educational staff to support the return to school.
The project offers two Support & Information Days each year – where families can network. We have developed a range of freely available information resources – including our ‘Childhood Stroke Handbook’ with accompanying animations, our ‘Questions to Ask’ series for parents, our awareness raising posters, and medical information card.The project also supported the development of the 2017 Childhood Stroke Guidelines.
What has been the feedback from stroke survivors/family members to the project?
Ever since we started, a number of very committed parents and professionals have helped guide our work, and we also receive regular feedback from families who access our services. The comments below reflect feedback on the support we offer, and the events we run:
“The support provided has literally been a life line at a time when there seemed to be no solution to our problems and we didn’t know where to start”
“This is an amazing responsive Service that ALL should know about”
“Thank you for a wonderful Support & Information Day. It is so helpful to meet and talk to other parents who are experiencing similar things.”
When reflecting on our service evaluation it is clear that offering time to talk, emotional support, information, and practical help accessing services are the main benefits families report. I have now been in touch with some families for nearly five years, and it has been a privilege to both support them through difficult challenges and celebrate with them in amazing successes.
If you would like to find out more about what we do, and view the resources we offer visit: https://www.stroke.org.uk/what-stroke/childhood-stroke-project