Heading in the wrong direction
Challenges in migraine care and why people with migraine deserve better
Stigma of migraine being ‘just a headache’ leading to thousands of patients being dismissed and struggling without care
Our new report, Heading in the wrong direction: Challenges in migraine care and why people with migraine deserve better reveals that people with migraine are struggling to access appropriate diagnoses and treatments. Misunderstanding of migraine being ‘just a headache’, lack of specialist care and unequal provision of treatments means many are left struggling alone with debilitating symptoms.
The key findings of our report
- Provision of specialist headache clinics is patchy (only 26 out of 42 ICSs in England report having one, along with only 3 of 7 Health Boards in Wales, 7 of 14 Health Boards in Scotland and 3 of 5 Health and Social Care Trusts in Northern Ireland)
- According to FOI responses, waiting times for specialist care for migraine have increased:
- In England nearly doubled from 15 weeks to 2021 to an average of 29 weeks in 2023
- In Wales 27 weeks up from 23 weeks in 2021
- In Scotland 29 weeks up from 9 weeks in 2021
- In Northern Ireland, some Health and Social Care Trusts reported waiting times of 13 to 20 weeks for “urgent” referrals and waits of 18 months for more “routine” cases
- Availability of CGRP treatments (the first preventative drugs developed specifically for the treatment of migraine) is inconsistent (available in 29% of responding NHS Trusts, 57% of Welsh Health Boards and 60% Northern Ireland Health and Social Care Trusts)
- Of those eligible for CGRP treatments only 52% had been offered it, with many reporting that their GP, neurologist or the local NHS does not prescribe it; that there was a lack of funds available to prescribe it; or that waiting lists are too long so clinicians were opting not to prescribe
“Sometimes it feels like you don’t get taken seriously until you’re collapsing or can’t handle the pain. I’ve tried lots of treatments, had many hospital appointments and the occasional A&E trip.
As a Black woman I’ve also noticed doctors have a perception of my pain tolerance being higher because of my skin colour too."
The impact of migraine goes far beyond pain
33% A third of callers to our helpline report a decline in mental health due to their migraine
72% 72% of children with migraine say it makes them feel worried
33% Our research found that 33% of people with migraine have had to leave their job altogether
“Not only are patients struggling, but poor management of migraine is putting unnecessary additional strain on an already struggling NHS. We are seeing rising A&E admissions for migraine across the UK. There is a shortage of GPs, consultants and nurses specialising in headache to meet the need that we know exists, and a broad lack of understanding of the condition, meaning patients are not being treated in the right place or at the right time, if at all.”
We are raising these issues in the media, with government and working with the healthcare and education communities, but you can help us ensure that these messages reach as many people as possible – and also so that those living with migraine know there is help available.
How you can support #MigraineAwarenessWeek
We would be grateful if you could help us raise awareness of what it means to live with migraine in the UK.
By sharing your experience, you are helping to raise awareness of migraine and helping others feel less alone.
This can involve sharing your story on our website or on our social media channels, speaking at events or talking to the media – for example your local paper or sometimes a national TV channel.
Join the conversation on social media and share your story and help us call for action, because people with migraine deserve better #MigraineAwarenessWeek
We are holding events in the UK, Scottish, Welsh, and Northern Irish Parliaments later on this year.
We want to bring together people who are impacted by migraine with parliamentarians so politicians can hear about what it is like to live with migraine, and what can be done to ensure people get the support and treatment they need to live and work.
oin one of our Migraine Awareness Walks and make each step count for this year’s Migraine Awareness Week.
If walking isn’t for you there are so many other ways to get involved this Migraine Awareness Week and help to raise awareness and vital funds to help us support everyone living with migraine.
We have some fundraising inspiration here.
We have lots of free and easy to understand downloadable information to help you learn more about migraine, its impact, and how to help yourself and other people with their migraine.
Support us during Migraine Awareness Week by downloading and sharing our poster.
During Migraine Awareness Week (Sunday 24th to Saturday 30th September) The Migraine Trust want to raise awareness of what it means to live with migraine in the UK.
1 in 7 people live with migraine and it is most common among adults of working age. It can impact working life, but this can be significantly reduced if people with migraine are supported at work.
The Migraine Trust’s recent research shows the impact of migraine in the workplace:
- an alarming 34% of people living with migraine have felt discriminated against at work
- almost half (43%) of people with migraine reported that their workplace did not believe them when they had to take sick leave due to a migraine attack
- over half of people surveyed (56%) say their workplace hasn’t made reasonable adjustments to help them manage migraine attacks at work
Information to share in newsletters and employee updates
Migraine is a severe and painful long-term health condition. If you have migraine, you will have migraine attacks, which can be a whole-body experience.
Common symptoms of an attack can include:
- head pain,
- problems with your sight such as seeing flashing lights,
- being very sensitive to light, sounds and smells,
- feeling sick and being sick.
Different people get different symptoms. When you have a migraine attack, you may not be able to function normally.
People with migraine often need very little help from their employer, but this small amount of support can enable them to work effectively with migraine.
Migraine symptoms can vary and keeping your manager informed about this can help us to understand how we can provide appropriate support and reasonable adjustments. You can download the Migraine Trusts’ ‘Managing Migraine in the Workplace’ toolkit, for suggestions on how to have these conversations at work.
This year for Migraine Awareness Week (Sunday 24th to Saturday 30th September) The Migraine Trust are raising awareness of the impact of migraine. Migraine has been dismissed for too long as ‘just a headache’, despite it being a complex and debilitating neurological disorder. For those living with migraine it has a significant impact on quality of life, impacts mental health, relationships, education and the ability to work.
How can you get involved this Migraine Awareness Week?
- If you have migraine – Share your story of how migraine impacts you at work – by sharing your experience, you will be helping to raise awareness of migraine and helping others feel less alone.
– Check out our resources on managing migraine at work, including our Migraine in the Workplace toolkit
- If you work with someone who has migraine – Take some time to find out more about migraine, it’s impact and how you can best support colleagues with migraine
- If you’re an employer – Contact us to arrange a ‘Managing Migraine in the Workplace’ information talk, and take the first step to becoming a migraine friendly workplace
- Consider becoming a corporate partner
Write to your local representative and help us raise awareness of what it means to live with migraine in the UK and ask them to support the 1 in 7 people in the UK living with migraine.
“Living with migraine is debilitating. It’s incredibly isolating. It took about 9 years to get a diagnosis. I spent years going to the doctor being told it was my mental health, that I was too stressed, to drink more water, to take paracetamol, to lose weight, to take more exercise. It got so bad that sometimes I went in crying. I was referred to ENT, went to the opticians the dentist but it wasn’t until I was finally referred to a head clinic that I was diagnosed with chronic migraine. It was such a long process. I actually cried because finally someone had listened to me.”