Stigma of migraine being ‘just a headache’ leading to thousands being dismissed and struggling without care
A new report out today from The Migraine Trust has found people with migraine are struggling to access appropriate diagnoses and treatments. Misunderstanding of the condition as ‘just a headache’, lack of specialist care and unequal provision of treatments means many are left struggling alone with debilitating symptoms.
One in seven adults (10 million) in the UK experience migraine. Over one million live with chronic migraine, meaning they experience headache for at least 15 days a month with other symptoms for eight of these, for at least three months. This week is Migraine Awareness Week which runs from 24-30th September.
In its report ‘Heading the wrong way’, the charity heard from many people who feel health professionals, especially in primary care, do not understand migraine. They report having their pain dismissed, being told nothing can be done for them and waiting years to access treatments. As a result, many are left feeling depressed, frustrated and unable to cope.
The impact of migraine goes far beyond pain. A third of callers to The Migraine Trust’s helpline report a decline in mental health due to their migraine. Migraine can affect all areas of life including ability to work and maintain relationships, leaving many of those affecting feeling isolated.
Megan, who lives with vestibular and chronic migraine:
“There are just so many barriers to migraine care. I’ve had GPs tell me just take paracetamol, others who don’t seem to understand what migraine is. One time I went to A&E unable to cope with the pain, but I wasn’t triaged and was sent home. At points my migraine has been so bad I’ve been at rock bottom. The head pain can be indescribable, but I also experience dizziness, blurred vision, disequilibrium, vomiting. My symptoms sometimes last weeks, even months. There’s a huge inequity as some people can access migraine treatments like CGRPs [calcitonin gene-related peptide antibodies monoclonal antibodies drugs] and others can’t. Then there’s the cost of things like acupuncture, supplements. Not everyone can afford it.”
The charity says that migraine is not being taken seriously as a health condition and those with the condition are being let down. It is calling for greater awareness of, and adherence to, pathways that exist for managing the condition, and increased education to support health professionals to identify and manage migraine. It is also highlighting the need for more specialist centres.
The Migraine Trust carried out patient surveys and sent Freedom of Information requests to Integrated Care Systems (ICSs), Trusts in England and Northern Ireland and Health Boards in Scotland and Wales to assess experience of, and variation in care. It found a lack of understanding, and a limited specialist workforce in primary care mean patients are often not getting the treatments and care they need.
Key findings include:
- 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(1):
- 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 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
A&E can be the appropriate route for patients with certain symptoms, however hospital admissions for migraine are increasing (2). NHS England estimate that 16,500 emergency admissions for headache and migraine could be avoided with the right care pathway.(3)
Robert Music, Chief Executive, The Migraine Trust:
“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.”
Most people who live with migraine should be successfully supported in primary care by their GP, who can diagnose migraine and advise on medication options and lifestyle adaptions, and might also be supported by community pharmacies. However, some will need to be referred to a healthcare professional who specialises in migraine, such as a GP with a Special Interest in Headache, or a neurologist. High numbers reported incorrect referrals, long waiting lists for specialist support or simply feeling dismissed.
Dr Brendan Davies, Chair, British Association for the Study of Headache and Consultant Neurologist, Royal Stoke University Hospital:
“Migraine is the most common of all the neurological disorders yet is vastly under recognised. The time has come for a nationally agreed educational framework and quality standard for primary care, as we have with other important long-term conditions. Health professionals in primary and secondary care must be empowered to effectively recognise and manage migraine and implement the breakthroughs therapies we now have. This will help reduce the massive impact migraine has on the UK population, in addition to benefiting medical professionals and the economy.”
Lack of understanding around migraine impacts all areas of life. A survey by The Migraine Trust found 29% of respondents had moved from full-time to part-time work due to their migraine and 25% had left a job as a result of it (rising to a third among those with chronic migraine). 43% felt their workplace had not believed them when they had taken sick leave due to a migraine attack and 34% had felt discriminated against at work(4).
When asked about their experience of primary care, patients highlighted wide variation in care, much of which goes against recommended NHS pathways, contributing to delays in accessing appropriate treatment. This includes almost 4 in 10 (38%) not being offered preventive treatment for their frequent migraine attacks by their GP before being referred to see a specialist, more than a third (36%) not being advised to increase the dosage of preventive medication if it was not working and the majority (67%) were not advised about the risks of medication overuse headache by their GP.
Annemarie who lives with chronic 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.”
Conner lives with migraine:
“I have been on over eight different medications with none of them being specifically made for migraine. My current medications of Candesartan and Nortriptyline seem to be working well although if this fails then my next step is Botox which I don’t really want to have. However, if it helps my migraine then I will try it. When I get a migraine attack, my first warning sign is I yawn a lot and have a pain in my right jaw. This then moves on to a dull pain on the right hand side of my head, it’s intense. I also get a watery eye and sometimes feel sensitive to sounds. If I can take a triptan at the first sign of my head becoming sore the migraine attack can be relieved in as little 30 minutes, however, if I leave it longer the attack can go on for a few days.”
View the full report at: https://migrainetrust.org/heading-the-wrong-way-report
For more information and interview requests contact: firstname.lastname@example.org or call 07947 567079