Heading in the wrong direction
In 2023 we released our latest report, Heading in the wrong direction: Challenges in migraine care and why people with migraine deserve better which found 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:
- 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% of children with migraine say it makes them feel worried
33% of people with migraine have had to leave their job altogether
“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.”
