The State of Migraine Care in the UK: Long Waiting Times, Inconsistent Medication Access, and Not Enough Training

By Kayt Sukel | November 17, 2023 | Posted in

A new report from The Migraine Trust pulls together data from multiple sources to show that migraine care in UK nations is lacking. The situation is likely similar in the US and other regions, too.

Over the past decade, different professional headache societies and patient advocacy organizations have published reports, offered educational sessions, and hosted meetings to provide greater understanding of the state of migraine treatment and care, and how to improve it. Now, The Migraine Trust, a United Kingdom-based nonprofit organization with the mission to “empower, inform, and support those affected by migraine,” contributes to that effort by publishing a new report, Heading in the wrong direction: Challenges in migraine care and why people with migraine deserve better, which gathers evidence from the UK National Health Service (NHS) and from patient and workplace surveys.

The report reveals substantial problems in the management of migraine, including long waiting times for specialist care, insufficient patient access to newer medications, and a lack of headache education for general practitioners (GPs), among other issues.

Based on its findings, The Migraine Trust is calling for a drive to improve migraine care across the United Kingdom; a thorough review of migraine needs in different populations; an audit of national migraine data to learn more about migraine incidence, access to care, and healthcare inequities; and for public awareness campaigns and resources.

Peter Goadsby, King’s College London, UK, and University of California, Los Angeles, US, said none of the findings were a surprise to him.

“What stands out, to me, is the contrast between the cost and burden of migraine to society and the disproportionate number of resources applied to that cost and burden,” he told Migraine Science Collaborative in an interview. “It is so stark how much of a problem migraine is in the United Kingdom, and it’s extraordinary that so little is being done to address it. Unfortunately, I don’t think it’s any different in the United States or in many other places.” Goadsby is a trustee of The Migraine Trust but was not involved with the new report.

Danielle Newport Fancher, author of 10: A Memoir of Migraine Survival and a leading migraine patient advocate in the US, agreed, emphasizing the report’s recommendation to improve migraine education for GPs and other clinicians, and to ensure better access to care.

“As a person who lives with chronic migraine, I have felt the frustration, exhaustion, and defeat in seeking proper treatment for my chronic migraine pain,” she said. “I know that I am not alone in feeling that way. What’s refreshing about this report is that it quantifies how many people are facing these challenges. My hope is that having this information can help guide awareness and a strategy to better address the needs of people with migraine disease.”

The report appeared on The Migraine Trust’s website during Migraine Awareness Week in late September 2023.

Putting the pieces together
Rob Music, chief executive of The Migraine Trust, said he and his colleagues wanted to create a “catalyst” to bring greater change to migraine care in the UK, when they first started thinking about creating the new report. They compiled data from Freedom of Information requests to NHS Trusts, Integrated Care Systems, and Health Boards regarding treatment, planning, and training for migraine. The report also compiled data collected by The Migraine Trust from interviews with GPs and from patient surveys regarding experiences in primary care, accessing new medications, and workplace support.

“We knew how important it was to put these different kinds of data together to make an impact,” Music explained. “We are often speaking to different audiences. Some will be number crunchers. Others will want to see data about the economics of migraine. Still others want to hear the patient perspective. But you need to put it all together to tell a proper story.”

Heading in the wrong direction highlights many alarming data points. These include waiting times for specialist headache care in 2023 that have increased across the UK – 29 weeks in England (roughly a doubling from 2021 levels) and Scotland (roughly a tripling), 27 weeks in Wales, and 13 to 20 weeks in Northern Ireland for “urgent” referrals and year-and-a-half waits for “routine” cases. The report also noted inconsistent patient access to new medications – access that was hindered by those lengthy waiting times.

Other key findings are that there are fewer than 80 GPs with specialty training for headache and migraine across the United Kingdom; the management of most headache cases falls to general neurologists, whose numbers are smaller compared to the European continent; and most Integrated Care Systems and Health Boards have not taken a proper look at the migraine needs of the patients they serve and how to meet those needs. With one in seven adults experiencing migraine, this is a major oversight, said Music.

After reviewing the report, Goadsby said he was particularly struck by the healthcare inequities highlighted in the data.

“You can find a number of headache experts in the cities, but once you get outside the city, it becomes much more difficult. This also applies in the United States,” he said. “There are such significant care inequities, and they go beyond geography. This means that you can’t get access to care, you can’t get a diagnosis, you can’t get treatment, and you see a lack of a broader understanding of the problem of migraine in the workplace. All these things fit together, and they need to be addressed.”

Changing course
Heading in the wrong direction not only provides critical data and patient stories, but also calls for sweeping reform. For instance, it recommends that the UK develop a national drive to improve migraine care, with governments and NHS working together to ensure best practice and training on migraine throughout each UK nation. Increasing the availability of headache specialists and providing more comprehensive migraine training to GPs, among other recommendations, will be a key aspect of this drive.

The Migraine Trust is also calling for an increased reliance on pharmacists to help support primary care for people with migraine. Shivang Joshi, director of headache medicine at Community Neuroscience Services, Westborough, Massachusetts, US, who trained as both a pharmacist and a neurologist, said that recommendation could make a huge impact.

“Having pharmacists involved, as well as physician assistants and nurse practitioners, can help improve access for so many people – it’s a great idea,” he said. “Pharmacists see migraine patients quite often and can help monitor how a patient is doing between provider visits. They can help identify cases of severe migraine, medication overuse, polypharmacy problems, and inappropriate use of acute medications, but also act as a source of education, helping patients to understand side effects and the newer generation of available therapies.”

The report also recommends that the region’s Integrated Care Systems and Health Boards take the time to thoroughly review the migraine needs of the communities they serve, and that public health agencies should work with partners on an audit of national migraine data to identify areas for improvement. It also calls for greater investment in public awareness campaigns and resources to help educate the public and reduce stigma.

Music said he’s aware these are big asks, but he thinks they are manageable. And while The Migraine Trust released the report during Migraine Awareness Week, he is hopeful that Heading in the wrong direction will continue to fuel opportunities for collaboration and improvement for the foreseeable future.

“While Migraine Awareness Week gives us a chance to make noise about improving migraine care, we need to continue having conversations about these needs with politicians, the NHS, and the greater healthcare community. We know that you can’t effect change without working collaboratively,” he said. “And by providing data to show that there continue to be access issues, workforce issues, training issues, and other problems, we think we can help break down barriers so people living with migraine can get the care they need in order to live happy, healthy lives.”

Kayt Sukel is a freelance writer based outside of Houston, Texas.

Reference
Heading in the wrong direction: Challenges in migraine care and why people with migraine deserve better.
The Migraine Trust
September 2023

Image credit: 123RF Stock Photo.

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Kayt Sukel is a passionate traveler and science writer who has no problem tackling interesting (and often taboo) subjects spanning love, sex, science, technology, travel and politics. Her work has appeared in the Atlantic Monthly, New Scientist, USA Today, Pacific Standard, the Washington Post, ISLANDS, Parenting, the Bark, American Baby, National Geographic Traveler, and the AARP Bulletin, among others. She has written stories about out-of-body experiences, artificial intelligence in medicine, new advances in pain treatments, and why one should travel to exotic lands with young children.

She is the author of two books: Dirty Minds: How Our Brains Influence Love, Sex, and Relationships (re-titled as This Is Your Brain on Sex: The Science Behind the Search for Love in paperback) and The Art of Risk: The New Science of Courage, Caution, and Chance.

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