Children and young people with migraine need change now

By: Rob Music, Chief Executive of The Migraine Trust

4th September 2022

Migraine affects 10 million people in the UK and is a condition that is too often dismissed as nothing more than a headache, despite the huge impact it can have on all aspects of a person’s life, from school and work to mental health.

Rob Music, Chief Executive of The Migraine Trust

This impact is perhaps even greater for the 1.2 million children and young people trying to live with a very painful and confusing condition while also trying to navigate school, friendships, exams and the generally active lifestyle that so many young people lead.

Missing out on social occasions and sports matches, dealing with migraine attacks during exams, and feeling misunderstood by friends, teachers and family can all take a toll on a child’s mental health.

This needs to change.

At The Migraine Trust, we are dedicated to reducing the stigma around migraine and raising awareness of the condition in children to help all young people with migraine live fulfilling and happy lives. In our new report, Dismissed for too long: The impact of migraine on children and young people, we highlight key issues faced by children with migraine in the UK and make recommendations for how we can tackle these challenges.

Migraine at school

We recently ran surveys of children with migraine, their parents/carers, and people working in schools. Some of the findings of these surveys were very concerning – 90% of children said their migraine makes it harder to do their schoolwork, while 72% said their migraine made them feel worried.

Nearly all children (97%) who responded to our survey said they have never been taught about migraine at school, and 64% thought that their school did not have the information about migraine to help them manage it at school. School staff are often trained on conditions that affect children, such as asthma and autism, so why not migraine?

While migraine can make school more challenging for a child, it can also impact their attendance and education. This, in turn, could have knock-on effects for a child’s future career prospects and life satisfaction. Of the 139 parents and carers we surveyed, 70% said they were concerned about the impact of migraine on their child’s education. Worryingly, 85% said they had spoken to their child’s school but just 17% were completely satisfied with the support school was giving their child.

It seems that schools do not have the resources they need to help children manage their migraine, despite the fact that migraine affects a tenth of all children and is more common than many other conditions that school staff are trained to deal with. We surveyed 64 education professionals and 76% said they felt their school did not have the information, resources or processes required to help children with their migraine.

We want to see the development of training modules for school staff to ensure all children across the UK with migraine are properly supported by their school or college. This week, based on feedback from children and young people, we are launching a new children and young people’s section on our website, which will include information and resources for those working in schools. We will also be encouraging GPs to liaise with their patients’ schools to urge them to provide appropriate support.

Better migraine care for children and young people

In addition to issues faced at school, many children are struggling to access the healthcare they need. Of the children who responded to our survey, 33% felt the treatment of their migraine was poor, 30% said it was fair, 23% said it was good, 8% said very good and none described it as excellent. This is obviously disappointing as we’d ideally like to hear all children and young people in the UK describe their care as excellent.

Migraine in children can sometimes be dismissed or not diagnosed quickly because it can differ from symptoms experienced by adults. About 4% of children live with abdominal migraine, meaning they experience stomach pain and sickness instead of the classic head pain so often associated with migraine. Migraine head pain can also look different in children, often affecting the whole head or front of the head instead of one side.

During discussion groups we also heard that many children and young people are left out of decisions about their own healthcare, which needs to change.

The Migraine Trust wants to ensure that children and young people are considered when decisions are made about migraine healthcare by Integrated Care Systems on the local and national levels. GPs and pharmacists should all receive training on the management of migraine in children and young people, and mental health support needs to be a core element of healthcare for children with migraine.

Driving change for children and young people

We know what needs to be done to improve the lives of children and young people with migraine, and will continue to shout loud about the issues they face. We are delighted to launch our new website section aimed at young people, their parents/carers, school staff and healthcare professionals, and plan to continue producing new tools and resources. But that’s just the start. We will be working hard to ensure children and young people receive effective healthcare, that GPs have up-to-date information on migraine in children, and that schools and colleges have the information and tools they need to support children and young people with migraine in their care.

We don’t want to see children’s futures affected before they’ve even started and that’s a real risk for many right now. Migraine is more common than diabetes, epilepsy and asthma combined and affects 10 million people in the UK alone. It has been dismissed for far too long and this must change.

You can read our full report, Dismissed for too long: The impact of migraine on children and young people, here.