Change is urgently needed

By: Rob Music, Chief Executive, The Migraine Trust

5th September 2021

The UK’s 10 million people with migraine have been failed for too long by a broken healthcare system

Migraine has been dismissed for too long as “just a headache”, despite its devastating impact on the 10 million (or one in seven) people in the UK who are living with the condition. This happens across society, from workplaces to schools and universities, and in people’s own homes.

Perhaps worst of all, it also happens in the healthcare system. In the place where people living with migraine most need to be taken seriously, they are too often overlooked.

That is why for this year’s Migraine Awareness Week (5-11 September), The Migraine Trust launched a new report, Dismissed for too long. The report reveals the legacy of pain and damaged lives caused by the UK’s broken migraine healthcare system – from waiting years to be diagnosed to a lack of access to specialist care and new treatment. These findings will shock many, though sadly will not surprise most people with migraine.

Key problems in migraine healthcare

People living with migraine are often only diagnosed several years after starting to have migraine attacks, if they are diagnosed at all. Our research found that over half of people who say they have migraine haven’t been officially diagnosed by a doctor. Of those who have been officially diagnosed, almost a quarter had been experiencing migraine attacks for more than two years before they were diagnosed. Given that migraine has been classed as one of the most disabling conditions in the world, this is a very serious problem which delays and prevents effective treatment.

Another key issue is lack of access to specialist care. At just 1.1 full time equivalent (FTE) neurologists per 100,000 population, the UK has a critical lack of neurologists compared to France and Germany, which both have more than four neurologists per 100,000 population. Most migraine patients never see a headache specialist, even those with chronic migraine who are referred to neurologists without an expertise in migraine. In addition, only a small minority of local NHS systems reported that they had a specialist headache clinic. While not everyone with migraine will need to see a specialist, far too many who do are being denied the specialist treatment they need.

These long-standing problems have intensified over the last year. Many people who are eligible for the new calcitonin gene-related peptide (CGRP) antibody migraine medication – the first ever drugs developed to prevent migraine – have struggled to access them, despite their being approved for use on the NHS. Freedom of Information requests submitted to all NHS Trusts in England and Health Boards in Northern Ireland, Scotland and Wales showed that only a small number were giving eligible patients access to CGRP treatment. There is clearly a postcode lottery of care where only the lucky few can access a treatment which has proven transformational for many migraine patients.

This should be such an exciting and positive time for those needing migraine care, but right now this lack of access is leading to continued poor health and deep frustration. The lack of adequate migraine treatment is bad for the NHS too: migraine causes 16,500 emergency admissions every year, at a cost of £11.5m.

Migraine patients are paying a heavy price for inadequate healthcare

These issues are having serious repercussions on the lives of people with migraine, including on personal relationships, work and mental health. A third of people with migraine reported that it had negatively affected their mental health due to frequently feeling that they were not believed or were a burden, while one quarter found it also impacted on their family life. In addition, 43 million workdays are lost due to migraine every year, in many cases resulting in a devastating hit to people’s personal finances, as well as the broader economy.

I was struck by one person living with migraine who told us: “There are no ways a migraine does not affect my life; it affects every part and is a constant issue for me to do anything… It affects your mental health as you just want to be normal.”

This adds up to a terrible toll on people with migraine. People shouldn’t have to face it alone, and this is why we are calling for an urgent review of migraine healthcare.

How we think these problems can be addressed

Although there are serious problems in migraine healthcare in the UK, people with migraine mustn’t lose hope. Many of these issues can be fixed by migraine simply being taken more seriously and given the time and priority it deserves.

We have set out a range of proposals in our report that we believe will speed up diagnosis and help ensure that migraine is given the attention it deserves.

These include a recommendation that everyone attending primary care for head pain should be assessed for migraine, with the outcome of the assessment recorded as a positive or negative diagnosis. We also think migraine treatment and care should be a core part of junior doctor and GP training, to make accurate and rapid diagnosis easier.

If someone is diagnosed, they should then receive an individualised care plan, developed closely with them. Regardless of whether medication is prescribed, they should have this care plan regularly reviewed with their doctor.

In addition to solutions focused on those giving and receiving care, we believe migraine should be properly prioritised from the top of healthcare systems. Integrated Care Systems in England and Health Boards in Scotland, Wales and Northern Ireland should review their migraine needs and plan services to meet them. This would be helped if they also appointed a migraine/headache champion, shared guidelines among colleagues, and took the lead on needs assessments, service development and healthcare professional education across the area.

Finally, we want migraine to be better known and understood to break down the myths and stigmas associated with it. National awareness campaigns and workplace guidance will help to start this important process.

The change that’s needed

To be honest, none of our report’s recommendations are revolutionary. They are straightforward solutions which we have developed with migraine care professionals and those directly impacted by the condition but would have far-reaching benefits for people with migraine and for our wider society, economy and NHS. That’s why change must happen urgently. The 10 million people in the UK living with migraine have been dismissed for far too long, and they should not have to put up with inadequate healthcare any longer.