Access to Migraine Treatment

Matthew Pennycook Excerpts

Wednesday 20th March 2024 Westminster Hall

[Dehenna Davison]

I am grateful to my hon. Friend for passing on Lisa’s remarks. She is one of millions in the country living with this condition and experiencing the debilitating effects. I hope that, following today’s debate, we will see improved access to treatment. I ask my hon. Friend please to pass that on to Lisa.

As I said, there are 10,000 people in every constituency but no debates in Parliament since the 1960s. I make special mention of Lord Londesborough for raising a question on migraine in the other place in October last year, rightly arguing that this invisible disability deserves much greater priority and resourcing across the NHS.

It is 60 years since the last parliamentary debate. Those suffering the crippling effects of migraine alone might feel that, even now after all that time, little progress has been made, but I am here to be optimistic. New treatments, such as CGRP blockers, are proving highly effective for many migraine patients, helping to reduce the severity, longevity and frequency of migraine attacks. For many taking CGRP blockers, they are often called a lifeline. One patient responded to our survey, saying that CGRP injections have “virtually eradicated my migraines”.

Although new effective treatments are being developed, they are not easy to access through the NHS. Across today’s debate, I will outline the key difficulties being faced by patients at each stage of the migraine journey, and will outline possible solutions to improving access to treatments and, ultimately, the lives of migraine patients. That is something that I think we can all agree is very much beyond politics.

Let us start with the basics and discuss what it is like to live with migraine. We had an example from Lisa, the constituent of my hon. Friend the Member for Kettering (Mr Hollobone). When experiencing a migraine attack, common symptoms can include a severe headache; nausea and/or vomiting; visual disturbance, such as blurry vision, spots of light or zig-zag lines; sensitivity to light and sound; an inability to concentrate and brain fog; difficulties forming words, which is not helpful in this place; and fatigue.

Interestingly, I had experienced migraine for years before I recognised some of the symptoms linked to it. I recall sitting at home reading “Managing Your Migraine” by Dr Katy Munro last autumn, with a coloured pen in hand, underlining all the symptoms that I experience when I get a migraine attack; and there were eight different symptoms. A severe attack can leave sufferers bed-bound in agony, with curtains closed, cowering in the darkness, unable to eat, unable to think clearly, and utterly miserable. Attacks can be completely debilitating, and I have experienced my fair share of them.

I am not the only hon. Member who lives with migraine. The hon. Member for Caerphilly (Wayne David) is unable to attend today but asked me to read his testimony in his absence. He said:

“I have suffered from migraine since I was a young man. It used to be extremely debilitating, but in recent years I have been able to minimise significantly the severity and frequency of attacks. There are so many different causes and triggers of migraine. For me, it is stress related. Manage my stress and I can usually manage my migraine.”

The hon. Member for Banff and Buchan (David Duguid) said:

“I first experienced migraine in my early teenage years, when I regularly had to be excused from school. I remember being particularly distressed at the disorientation and confusion, as well as the extreme headache and nausea, of course. Migraines have become no less debilitating as I have grown into adulthood but they have become less frequent, and I generally know what to expect when symptoms start, and what medication to take. Like my father before me, I now watch my 12-year-old son experiencing his first migraines and the confusion it brings. As much as I can empathise with my son, I am only too aware of how little I can do to relieve his distress.”

The frequency of migraine attacks can vary. Some people will experience a small number of attacks over a lifetime, some one or two a month, but for others migraine can become chronic, meaning that headache is present more than 15 days a month, with at least eight of those having other migraine symptoms. That is the condition that I live with, as do around a million other people in the UK. For me, that means that I have a headache all day, every single day. Although they vary in severity, they are none the less draining, particularly on the many days when they are coupled with other migraine symptoms.

Recently, I spoke to Mollie Campbell, a brilliant young woman who like me lives with chronic migraine. Her journey helps to outline some of the difficulties that patients face in accessing treatment. In her own words, she remembers her first attack vividly:

“on a normal day, I woke up in agonising pain in my eye, eyebrow, and head. When I say ‘pain’, I mean torturous and excruciating pain, the kind that makes you roll around on the floor sobbing in agony.”

Mollie sought help from her GP, but it took months, several misdiagnoses, a number of unsuitable drugs being prescribed and, eventually, her paying to access a scan privately before she was eventually diagnosed with chronic migraine. Unfortunately, Mollie’s story is not uncommon. It can take patients months, if not years, to get a diagnosis.

A commonly expressed sentiment is that GPs do not always take the condition of migraine seriously. One patient who responded to our survey explained that they waited

“five and a half years from first presenting to a doctor taking them seriously and investigating”.

Another said that

“it took 19 years to be diagnosed with migraines”,

and another:

“Doctors just don’t seem to know or understand enough about it and I have been fobbed off a lot.”

[Matthew Pennycook (Greenwich and Woolwich) (Lab)]

I was contacted by a constituent who wishes to remain anonymous and who suffers from debilitating hormonal migraines. She is frustrated by the lack of general awareness among medical professionals, GPs in particular, about the specific treatment and medication that those who suffer from that type of migraine need. Does the hon. Lady agree that to make progress in addressing the condition, we need to ensure greater knowledge among medical professionals about the specific treatments needed by those who suffer perimenopausal and menopausal migraines?

[Dehenna Davison]

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.