Access to Migraine Treatment — [David Mundell in the Chair]

Part of the debate – in Westminster Hall at 9:30 am on 20 March 2024.

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Photo of Dehenna Davison Dehenna Davison Conservative, Bishop Auckland 9:30, 20 March 2024

I completely agree with the hon. Gentleman. He will be interested in a paragraph that I will be reading out shortly, which addresses his very point.

Another testimony said:

“I have suffered migraines for approximately four to seven years but never went to the doctors until recently through fear of being dismissed.”

Some believe that is because GPs across the board just do not know enough about migraines. One GP said to the Migraine Trust:

“In medical school, neurology is a small part. Unless you have specifically chosen to do neurology, you will not have any formal training.”

GP training on migraine and headache disorder is patchy at best, and often relies on local champions spearheading that, rather than a more formalised structured. Our clear ask to the Minister, therefore, is to ensure improved training on headache and migraine as part of the medical training for GPs, to ensure that early diagnosis is possible.

For those who get a diagnosis, seeing a neurologist or headache specialist is a crucial step in helping with ongoing management, not least because specialist treatments cannot be accessed through primary care—I will return to that point shortly. On waiting lists to see specialists, experiences vary, but the broader picture is not as positive as it could be. Two patients outlined how, after many years of waiting for a diagnosis, it took a further four years from that point until they saw a neurologist. One said:

“I waited five months to receive an appointment letter then another five months until the actual appointment date”,

and the other said that they:

“waited 15 months to see a neurologist who then referred me to a specialist. I have been waiting for seven months for that, with no appointment yet.”

Even when eventually under the care of a specialist, some outlined that the continuity of care was not there. One patient said:

“I was prescribed a treatment to try, and was discharged, and then I had to be re-referred to try and alternative when the first option didn’t work.”

Recent analysis from the Migraine Trust found that, on average, it takes 29 weeks to access a neurologist or headache specialist, which has doubled from 15 weeks in 2021. Even then, neurologists may specialise in other conditions such as stroke and Parkinson’s rather than headache and migraine. Part of the issue is a lack of neurologists and headache specialists around the country. The UK has around 1.1 full-time equivalent neurologists per 100,000 people, versus four per 100,000 in France and Germany. Regional variations mean a postcode lottery, with major disparities between waiting lists from trust to trust. Here, our key plea to the Minister is to ensure that more specialists are trained to plug the gaps in neurology and headache specialists and, ultimately, to speed up access to treatment.

Once a diagnosis is in place, the obvious next step is treatment. Often, GPs will prescribe acute medications such as triptans to help manage attacks when they occur. For those suffering more frequent migraine attacks, preventive medications can be prescribed, but many of those were not designed specifically for migraine, such as topiramate, an epilepsy drug, amitriptyline, an anti- depressant, or candesartan, for the treatment of high blood pressure. Some people do report an improvement in the severity and frequency of their migraine attacks, many do not, and can in fact experience negative side effects from such medications. Nevertheless, there are now treatments designed specifically for migraine, such as CGRP blockers, as already referenced, and there are many different kinds, such as wafers that dissolve on the tongue, injections or infusions.

However, National Institute for Health and Care Excellence guidelines are, for many, getting in the way of early treatment. Take, for example, the CGRP blocker erenumab—I always pronounce that wrong. A 2021 study in the Journal of Clinical Medicine by Maraia, Ricci and others found that, as a treatment for the prevention of migraine, erenumab successfully reduced the mean number of monthly migraine days and the acute medication used per month in 96% of cases—a real success story. However, NICE recommendations state that the drug

“is recommended as an option for preventing migraine in adults, only if…they have 4 or more migraine days a month” and

“at least 3 preventive drug treatments have failed”.

Let us take a second to understand that. If someone is struggling with migraine, they must try three drugs that are not designed for migraine, usually for at least three months each, and if those are unsuccessful, they may be able to access a drug that is specifically designed to prevent migraine attacks. That makes little sense, and it can delay patients’ access to successful treatments for months, if not years. One survey respondent said:

“Getting treatment has been difficult. To access the latest treatments, you have to fail so many preventatives.”

The American Headache Society and migraine expert Professor Peter Goadsby suggest that CGRP blockers should be available as a first-line therapy, not as a last resort. We support that call, so I ask that the Minister requests that the NICE guidelines are updated to allow specialised treatments such as CGRP blockers to be accessible first, which would provide earlier, much-needed relief for migraine patients.

Similarly, despite NICE approval for many CGRP blockers, whether individual NHS trusts even allow access to them is a postcode lottery. One respondent said:

“Once help is found, though, it can be difficult to access as it depends on which area you live in.”

Another said that

“my NHS trust only allows the trial of one of the anti-CGRP drugs and if it doesn’t work you are not allowed to try another as it’s not funded.”

A Migraine Trust freedom of information request, which I found shocking, found that only 29% of trusts in England allow access to CGRP medications. Here we make yet another ask of the Minister: the postcode lottery in access to CGRP medications should be addressed and fixed, perhaps through fresh NICE guidance and a dedicated push from the Department of Health and Social Care for trusts to allow more access to these life-changing medications.

Another key change that could help those living with migraine to access positive treatment sooner would be allowing treatments such as CGRP medications to be prescribed by primary care practitioners. I have spoken of the success of some CGRP blockers, yet they can be prescribed only by specialists, such as neurologists, who can have extensive waiting lists, as we have discussed. Even if someone sees a specialist, they need to demonstrate that other treatments have been ineffective. If specialist drugs could be prescribed in primary care as a first resort, we could reduce dramatically the impact of chronic migraine on patients. Pilot work in Scotland has seen community pharmacy playing a greater role in prescribing drugs to prevent and manage migraine. A further ask for the Minister, if he will forgive me, is a review of CGRP blockers and other new treatment options, so that they can be prescribed in primary care.