Childhood Stroke Project offers families time to talk, emotional support, information, and practical help

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.

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

Report on Tianfu Stroke Research Methodology Training Workshop, Chengdu, China 25th May 2018

The Tianfu Stroke Research Methodology Training Workshops held in Chengdu, China on the 25^thMay 2018was organised by Professors Ming Liu and Shihong Zhang and their team from the West China Hospital Chengdu.  

It took place the day before the Tianfu Stroke Conference and attracted over 100 clinicians (all in the early stage of their research careers) who were interested in clinical stroke research. The WSO Faculty members were Professor Ming Liu, Professor Craig Anderson, and the other Faculty were Dr Fergus Doubal, Professor Shihong Zhang, and Jie Yang.  

The focus of the workshop was on epidemiological and clinical (bedside) research and the topics were: 

• First steps in research: what training do you need
• Raising a good research question, and choosing the correct research design
• A checklist for setting up your research study
• Cluster RCT/RCT based on stroke registry
• Introduction of common scales in clinical research of stroke
• Imaging of cerebral small vessel diseases
• Techniques of cerebral perfusion imaging in assessing collateral circulation
• Introduction of imaging technology in study white matter diseases
• How to write a scientific paper and get it published
• How to critique a scientific paper: perspective from reviewers
• How to write a funding application.

The workshop involved interactive tasks and there was very active discussion of each topic, with Faculty members being asked supplementary questions during the breaks.   Feedback on the course was very positive.

The faculty L to R, Prof Wu Bo, Prof Wei Manlin, Prof Zhang Shihong, Prof Peter Sandercock, Prof Liu Ming, Prof Craig Anderson.

Professor Peter Sandercock attended the workshop as faculty, he is the Chair of the World Stroke Organisation, Education committee. 

We reach, we teach, we treat

World Stroke Campaign Individual Achievement Award Winner, Dr Bindu Menon provides an insight into her innovative outreach to poor rural communities to raise awareness and increase access to preventive treatments for stroke.

It has indeed been an overwhelming moment for me to receive the prestigious World Stroke Award. I thank the World Stroke Organization and the World Stroke Campaign for recognizing our activities and giving us a platform to share our work.

One World Voice for Stroke

Left to Right: Patrik Michel Swiss Stroke Association, Mia Grupper WSO Exec Director,
Prof Werner Hacke President WSO, Prof Bo Norrving Chair Global Policy Committee, WSO

WSO advocacy around the 71st World Health Assembly and UN High Level Meeting on NCDs

The World Stroke Organization leadership team are in Geneva this week. Alongside WSO membership and patient representatives, they are contributing to critical health policy discussions taking place in and around the 71stWorld Health Assembly.

WHO Director General sets out ambitious 'Triple Billion' targets at 71st World Health Assembly in Geneva

Today WHO Director-General, Dr Tedros Adhanom Ghebreyesus opened the Seventy-first World Health Assembly in Geneva launching an ambitious agenda for change that aims to save 29 million lives by 2023. 

Ministers of Health and other delegates from WHO’s 194 Member States are meeting to discuss a range of issues, including  WHO’s 5-year strategic plan to help countries meet the health targets of the Sustainable Development Goals (SDGs). 

"This is a pivotal health Assembly. On the occasion of WHO’s 70^th anniversary, we are celebrating 7 decades of public health progress that have added 25 years to global life expectancy, saved millions of children’s lives, and made huge inroads into eradicating deadly diseases such as smallpox and, soon, polio," said Dr Tedros. 

"But the latest edition of the World Health Statistics, published yesterday, shows just how far we still have to go.  Too many people are still dying of preventable diseases, too many people are being pushed into poverty to pay for health care out of their own pockets and too many people are unable to get the health services they need. This is unacceptable," he added.

YSP career tips for success 10. Knowing when to say no

We continue our theme of balance and finding space for family, friendships and leisure time. Professor Bruce Campbell from the Department of Medicine  of the Royal Melbourne Hospital, in Melbourne, Australia. We know one very well known Professor who informs on their out of office that all emails sent during their out of office time will be deleted and emails of importance will need to be sent again after a certain time. If you are in a senior position, this could definitely be a consideration!

Have you had enough?

Have you had enough?

Have you had enough of failed promises from leaders who have committed to take ‘real action’ to tackle stroke? Enough of not being listened to about your experience of stroke, or why it’s so important to prevent it? Enough of lots of talk but not a lot of investment or outcomes? So have we!

As Supporting Members of the NCD Alliance, WSO is supporting the global campaign to make sure that our leaders show up and stand up to NCDs and stroke at the UN High Level Meeting on Non-Communicable Diseases, taking place this September in New York.

YSP career tips for success 9. Balance, Organizational skills/balancing family and work

Associate Professor Coralie English, who works in physiotherapy at the University of Newcastle  knows what it's like to balance a successful work life and a busy little family.  Assoc. Professor English explores this important point in career management, and as we come in to the Northern hemisphere summer this is an incredibly timely tip! 

YSP career tips for success 8. meeting potential Collaborators

As we all know, face to face contact can be incredibly helpful, and is a quick way to integrate into a global scientific career! Dr. Shoichiro Sato Consultant Stroke Neurologist, Chief of Cerebrovascular Clinic at the National Cerebral and Cardiovascular Center, Osaka, Japan talks about meeting with potential collaborators. You can use these tips below at the coming ESOC next week in Sweden! If your anywhere near the World Stroke Organization blog, do drop by and say hello!

8. Meeting potential collaborators

Collaborations with other researchers can make your research excellent. You can attend events in your institution or join domestic/international conferences, not only to watch or make presentations, but also to network with potential collaborators.  

WSO welcomes the Red Bracelet Volunteers Corps

The World Stroke Organization (WSO) is excited to welcome the Red Bracelet Volunteer Corps, part of the Chinese Stroke Association (CSA), as a stroke support organization member.

CSA established the Red Bracelet Volunteers Corps to provide education and support for stroke survivors, families and healthcare professionals involved in stroke treatment, management and rehabilitation across China.

This Corps has 1,100 facility members and 29,700 individual members throughout China, who engage in activities such as awareness campaigning, prevention screening, lobbying for better services, providing services and support in the community.