We've developed a number of resources relating to stroke in childhood through our Childhood Stroke Support service. Some of these are aimed at parents and carers, while some are suitable for children, brothers, sisters and friends. Many of these resources will also be of interest to professionals supporting families affected by stroke in childhood.
Childhood stroke resources for young people
Our childhood stroke handbook explains to children what happens when they have a stroke, and it also has advice for parents.
We've developed four videos to illustrate the content of the childhood stroke handbook, thanks to the support of the Childwick Trust. These are available in the childhood stroke playlist on our YouTube channel. They're also available on a page we've built specifically for children, called explaining stroke to children.
Our All About Stroke publication also helps explain stroke to children and is available to download.
Childhood stroke resources for parents and carers
In this video, young stroke survivor, Oli, talks about getting back to life after stroke.
Our childhood stroke guide provides information about the causes of stroke in children, the treatments, and coping with life after childhood stroke. We've also developed a childhood stroke handbook, which explains to children what happens when they have a stroke and also has advice for parents.
Find more videos on what happens when you have a stroke, getting better after having a stroke, and talking about having a stroke in the childhood stroke playlist on our YouTube channel.
Our childhood stroke question and answer sheets help inform families of what to ask in different appointment settings following a stroke. These have been developed through working with parents and professionals:
- Questions to ask when your child starts or returns to school.
- Questions to ask at neurology appointments.
- Questions to ask when looking for therapy services or attending therapy appointments.
Our childhood stroke posters raise awareness that stroke happens to children and young people too. Download now:
Lily-Mae had a stroke at the age of 7. Here Lily-Mae's parents speak of their personal experience and give an account of the problems parents face when dealing with childhood stroke.
We've also developed a small medical information card for use by childhood stroke survivors. If you'd like a free copy, please contact childhood@stroke.org.uk or you can download your copy now.
Childhood Stroke resources for professionals
Our childhood stroke guide provides information about the causes of stroke in children, the treatments, and coping with life after childhood stroke. We've also developed a childhood stroke handbook, which explains to children what happens when they have a stroke and also has advice for parents.
We've also developed a toolkit for teachers and childcare professionals to help with supporting children after a stroke, which is also available for download.
We also have the following resources available for NHS teams to download, print and share with patients:
- Information leaflet – A leaflet to share with parents, carers or guardians of patients you refer or signpost to the service.
- A4 poster – A poster you can display in communal areas so that people affected by stroke in childhood know there is support available.
- Introductory card – A handy card to give patients with details of how we can support them and how to contact us.
If you’re a professional, you can refer patients to our Childhood Stroke Support by filling out our simple form or if you’d prefer to send this information via email, you can download this form, and send securely using Childhood.stroke@NHS.net.
Other sources of information and resources
You'll find additional links to organisations below, all of whom can offer further support and information related to childhood stroke.
Stroke, brain injury and hemiplegia organisations
- Contact – an organisation which supports the families of children with disabilities. They also provide a helpful guide for families which puts all the information in one place and helps explain jargon and job titles. Families can order a free copy of the guide on this page.
- Brain Injury Hub – a website providing in-depth information on childhood brain injuries (including stroke).
- Child Brain Injury Trust – an organisation that supports children, young people and families affected by acquired brain injury. Provides information, advice lines, local services and events.
- Cerebra – an organisation that supports children, young people and families affected by neurological conditions. Provides information, resources and services. Has an Innovation Centre which will customise equipment for children with disabilities.
- Scope – an organisation which supports the families of children with disabilities. Provides a range of services and information.
- Young Sibs – an organisation which supports the siblings of children with disabilities. Provides information, resources and a chat room.
- CHASA – an American site providing a range of information and resources about stroke and hemiplegia that affects childhood.
- International Alliance for Pediatric Stroke – an international site drawing together a range of information and resources on stroke in childhood.
- CPSSA – a Canadian site providing a range of information and resources on stroke in childhood.
- Calgary Pediatric Stroke Program – a Canadian site addressing some of the frequently asked questions about stroke in babies/around the time of birth.
- Different Strokes – an organisation that supports younger people affected by stroke, and has a resource page for stroke survivors from ages 13 – 25.
- Strokidz – an Australian site providing a range of information and resources on stroke in childhood.
Family and parent-led organisations
- My Child had A Stroke – a Facebook group led by parents of children who have had a stroke. The group has over 900 members who share experiences and offer one another vital peer support and useful practical tips. The group are fantastic advocates for stroke in childhood. They've been instrumental in shaping and co-producing our Childhood Stroke Support service.
- Hemihelp – provides information and support to children and families affected by weakness on one side of the body. They have activity and support groups for parents and siblings and give advice on aids and equipment.
- HemiChat – is a parent-led UK charity built on support relating to babies, children and young adults living with Hemiplegia. HemiChat's mission, passion and primary ambition is to unite families affected by Hemiplegia, enabling them to share support, information and life experiences. Contact 0844 8023203.
Education and advocacy organisations
- IAS Services – offers information, advice and support for disabled children, young people, parents, and those with special educational needs. You can check here if there is a service in your area.
- IPSEA – an organisation that offers legal advice, support, and training for parents around Special Educational Needs.
- Council for Disabled Children – a national umbrella body that brings together a diverse range of organisations that work with and for disabled children, to support the development and implementation of policy and practice.
- SOS!SEN - an organisation that offers information and advice on special educational needs and disability through a national helpline and local walk-in SEN advice centres.
- Statutory guidance on supporting children at school with medical conditions – includes examples of care plans.
Financial support and grant-giving organisations
Your financial situation may change after a stroke. Find out what support may be available to you.
- Cerebra offer a specific guide to applying for DLA, and Contact offers a benefits check via their helpline.
- Turn2Us and Disability Grants offer search functions so you can look through a range of grant providers.
- Organisations that offer grants to young people affected by stroke, brain injury and disability include Family Fund, the Child Brain Injury Trust and the Roald Dahl Charity.
- Young people considering study in further education settings may be interested in the Disabled Students Allowance, and those interested in learning to drive may be interested in the Motability Charity and Scheme.
- Carers UK - information on carer support and benefits, including criteria for applying for carers allowance, and to find local support.
Clinical guidelines for childhood stroke
These clinical guidelines were created in collaboration with the Royal College of Paediatrics and Child Health and are available to download.
Related conditions
- Sickle Cell and Young Stroke Survivors and Sickle Cell Society – organisations that offer information and support to children, young people and families affected by stroke and sickle cell disease in childhood.
- Epilepsy Action and Young Epilepsy – organisations that provide tailored information about epilepsy for children and young people.
- Cardiac risk in the young and the British Heart Foundation – organisations that provide tailored information about heart conditions in children and young people.
Resources for families and young people
- Acquired Brain Injury in Children: A Parents' Handbook – a comprehensive guide from The Children's Trust.
- Me and my brain – a handbook for teenagers with acquired brain injury – a detailed guide from The Children’s Trust designed with input from teenagers living with brain injury.
- All about my brain – a book from the Child Brain Injury Trust to help young people understand brain injury and what strategies might help them.
- Heads-up, Tim-Tron – a book for younger readers who'd like to know more about acquired brain injury.
- The International Alliance for Pediatric Stroke has a range of resources and publications about childhood stroke.
Video resources
- A Stroke Can Happen at Any Age by the International Alliance for Pediatric Stroke is a video made to raise awareness that stroke happens to infants, children and even before birth.
- Young stroke survivor, Oli, talks about getting back to life after stroke.
- Lily-Mae had a stroke at the age of 7. Here Lily-Mae's parents speak of their personal experience and give an account of the problems parents face when dealing with childhood stroke.
- My Way by Hemihelp is an uplifting collection of homemade clips filmed by families and people affected by hemiplegia (weakness down one side of the body, which can sometimes be a consequence of stroke). The aim is to tell the world that hemiplegia doesn't mean living half a life. If we face a challenge then we just find our own way around it.
Bereavement and grieving a child after stroke
Sadly, as with adult stroke, not every child survives. If you've lost a child through stroke, there are specialist support services that can support you and help you come to terms with your loss.
You can call our Helpline on 0303 3033 100 to ask for advice on finding help after the death of a child, or just for someone to talk to.
We have information available online about bereavement and the grieving process, which can also be downloaded in different formats.
You may also find the services below are of help to both you and your family:
- Childhood Bereavement UK.
- Cruse Bereavement Support.
- NHS: Helping children with bereavement.
- The Lullaby Trust: Bereavement support after the death of a baby or child.
- Heal Grief: Grieving the death of a child is often referred to as the ultimate tragedy.
- Good Housekeeping: How to support children through grief.