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.
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.
Childhood Stroke Project Team Anna Panton & Florentina
Meggersee
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
