That this House has considered access to migraine treatment.
It is, as ever, a pleasure to serve under your chairmanship, Mr Mundell. Let me start by stating the blooming obvious: migraine is not just a headache. It is a complex neurological spectrum condition, of which a headache is just one possible symptom. This is a very strong early message to anyone suggesting that migraine attacks can be cured with a couple of paracetamol: it is time to learn and to be better. Listen to this debate and to the testimonies of those living with this debilitating condition, and help us together overcome the stigma surrounding migraine, which for centuries has acted as a barrier to accessing quality treatment for those suffering.
Before I get into the full swing of things, I want to express my gratitude to the House authorities for organising a survey to which more than 500 migraine patients responded. I am grateful to each and every one of them, and to others who reached out to me separately to share their experiences. Some of those testimonies have been eye-opening and some have been quite harrowing. I will endeavour to include as many as I can in this speech. As ever, my thanks go to the National Migraine Centre and the Migraine Trust not only for their support for this debate but for their round-the-clock work to support people living with migraine.
We cannot have a Westminster Hall debate without a bit of a history lesson at the beginning, so I did a bit of a dig through the history of migraine and found that the earliest known references to it date back thousands of years to ancient Egyptian times. The father of medicine, Hippocrates, was the first to document clinical observations about migraine in about 400 BC. Classifications of headache were first outlined in the first century AD by Aretaeus of Cappadocia, whose category of heterocrania displayed many similar symptoms to migraine. Galen wrote of severe pain affecting almost half the head in the second century, and the Iranian physician al-Rāzī devoted an entire chapter of his book to the symptoms and treatment of migraine in the 9th century. Then in the 17th century, Thomas Willis published his theory that megrim owed to the dilation of blood vessels within the head.
Throughout the years, key figures are reported to have experienced migraine. They include leaders such as Julius Caesar and Napoleon Bonaparte, Ulysses S. Grant and Robert E. Lee, Woodrow Wilson and John F. Kennedy; great thinkers such as Sigmund Freud, Friedrich Nietzsche and Charles Darwin; artists such as Van Gogh; writers such as Virginia Woolf; and actors such as Elizabeth Taylor, Hugh Jackman and Gwyneth Paltrow. There is even strong speculation that the trippy nature of “Alice in Wonderland” was inspired by Lewis Carroll’s own migraine attacks with aura. In his diaries from 1885, Carroll talks of the
“odd optical affection of seeing moving fortifications followed by a headache.”
His works led to the term “Alice in Wonderland syndrome” being coined to describe
“Certain hallucinations peculiar to migraine”.
In Carroll’s diaries of 1856, he records a trip to see William Bowman, one of the top ophthalmologists of his time, to discuss the visual disturbances in his right eye, which Bowman was unable to formally diagnose. Perhaps that was because it was not until the 1870s that visual manifestations of migraine began to gain more widespread recognition among medical professionals.
Migraine is than twice as likely to affect women, but in that period it was believed that we weak women merely had hysteria and fragility of the mind, unlike the ambitious men who got migraine only because of how hard they were working. Women being taken seriously in healthcare is a bit of a pet peeve of mine. Although I greatly welcomed the women’s health strategy, I was a little disappointed not to see migraine more formally mentioned. Perhaps the Minister will discuss that with me separately.
The 1870s were 150 years ago, and we might naively assume that in that time the magnificence of medical innovation has created cures and solutions that mean that people no longer suffer the terrible symptoms of migraine. Back in 1954, the then Minister of Health told those affected by migraine:
“Cheer up; there is a good deal of work going on, mostly under the Medical Research Council”.
That led to a response in 1960 by John Rankin, then the hon. Member for Glasgow, Govan, who said.
“For six years, and long before that time, the good work, so we are informed, has been proceeding, yet nothing appears to be happening.”—[Official Report, 4 March 1960; Vol. 618, c. 1671.]
More than 60 years later, despite migraine affecting roughly 10,000 people in every constituency in the UK, a Hansard search informs me that there has been no full debate on migraine in Parliament since the 1960s.
I congratulate my hon. Friend on her powerful and extremely well informed speech. One of those 10,000 in the Kettering constituency is Lisa, who has written to me to say,
“I spend most of my weeks, either with a migraine or with the after effects, which include complete exhaustion that can last two or three days. I have medication that does not always work. I get facial paralysis and will often have slurred speech, light sensitivity, nausea, dizziness, along with immense pain and pressure in my head. It is an awful existence.”
I want to pass on to my hon. Friend that Lisa adds,
“I am so glad to know that it is being debated in Parliament today.”
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 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.
I congratulate the hon. Lady on securing the debate. On making the blockers more widely available, does she agree that, as well as the requests that she has put to the Minister, there should be discussion and consultation with the devolved institutions, so that people right across the United Kingdom can avail themselves of the same?
Dehenna Davison
I completely agree with the hon. Gentleman. As I said, migraine is a condition that does not discriminate. Roughly one in seven people in the world live with migraine, so it is as relevant in the devolved authorities as it is anywhere else. We want to ensure that migraine patients across the whole of the UK have access to the best possible treatment.
For those who cannot access CGRP blockers or alternative treatments through their local NHS trust, or who simply cannot bear the extensive waiting lists to see specialists, drugs bought privately can be incredibly expensive. For example, rimegepant is around £270 per month when taken as a preventive, Botox injections for migraine are around £700 every 12 weeks and Vyepti infusions are around £600 every 12 weeks, and that does not include the cost of seeing specialists and having the prescriptions written, which of course means an additional fee. For those on low incomes, those options are completely inaccessible without NHS treatment, yet some are unable to access them regardless because of the decisions of their local NHS trusts. One survey respondent said:
“I had to spend £8,000 on CGRP treatment privately before moving to a hospital who would fund me under the NHS.”
Nobody should be priced out of quality healthcare, particularly when that healthcare can be truly life changing.
In all, I have outlined a number of tangible steps that could be taken and which would have a real and positive impact on those living with migraine, but let us return to Mollie’s story because, sadly, her experience is an example of how the current system does not always work for patients. In her words:
“Four and a half years later, there is not one second of any day in which I am not in pain. My pain is an average of 7/10 a day, and it soars up to 10/10 at least ten times a day...When it reaches these levels on a daily basis, every single day, you simply cannot live life normally anymore. I can no longer work, see my friends, or do any of the hobbies I used to enjoy. Every single thing that brings me pleasure is now impossible for me.”
For those living with severe chronic migraine, the huge detrimental impact on day-to-day life should not be understated. I have reached the point where I get anxious making plans, either for work or with family and friends, for fear that a severe attack may mean that I have to cancel at the last minute. With attacks seemingly getting more and more frequent, it feels increasingly like cancellation is an inevitability. This may sound really silly to some, but it is a really human example for me. I am a lifelong Swiftie and I managed to achieve the holy grail of getting Taylor Swift tickets for the Eras tour, but I am petrified that on the day a migraine attack might hit and take away my opportunity to see her live, because I would be devastated. Some might say that that is a silly example, but it is one of the things that are on my mind. If someone is living healthily, they do not have to have those sorts of considerations when making plans.
Paul Girvan (South Antrim) (DUP)
I thank the hon. Member for securing this debate. In the light of what she has just said, I will say that many people who suffer from migraine lose their job and have difficulty even accessing the likes of personal independence payment, because migraine is so debilitating whenever it happens but it is also unpredictable. Their life can become awkward when it comes to just doing things normally, but they have difficulty accessing PIP because of it.
Dehenna Davison
I agree with the hon. Member. In severe cases, migraine is absolutely a disability. It ruins lives. There is a separate discussion to have with the Department for Work and Pensions—I do not want to put all the pressure on the Department of Health and Social Care—about how it addresses chronic migraine and intractable migraine when making its assessments. I thank the hon. Member for raising that really important point, which came through from a number of our survey respondents as well.
Some workplaces make adjustments, such as allowing flexible working, but there are also reports of workplaces not making suitable adjustments. One respondent said:
“There is a complete lack of understanding that chronic migraine is a disability and employers are not willing to make allowances for this condition in the way they do with other disabilities.”
Shockingly, the Migraine Trust found that 56% of migraine patients said that their workplace had not made reasonable adjustments. That is why the organisation has launched its workplace pledge this week to encourage employers to make small, often low-cost adjustments that can make a huge difference for staff with migraine. We must remember that with one in seven people living with migraine, there is a good chance that even if someone does not, at least one of their colleagues probably does.
The impact of migraine on the workplace is not just confined to individuals dealing with the stress of potentially losing a job and income; there is a wider impact on the economy too. The Work Foundation has found that migraine causes between 28 million and 43 million lost work days per year in the UK, at a cost of around £4.4 billion. When we add the cost of that absenteeism to the cost of presenteeism—showing up and putting on a brave face but not being able to function normally —the Migraine Trust estimates that the total cost is closer to £9 billion.
We often talk about the need to improve productivity here in the UK, so surely helping those living with migraine access quicker and better treatment so they are able to work and fire on all cylinders would be a great step forward. That is especially so when coupled with the fact that, according to the Journal of Health Economics and Outcomes Research, the excess fiscal costs to the Government of one person living with migraine come to £19,823. That is the cost for one person, when there are 10 million in the UK battling the illness.
Giving up work for health reasons is not a choice that anyone makes lightly. For many, as well as the financial cost, there can be a significant cost to people’s mental health. Research by the Migraine Trust found that 78% of those living with migraine said it had a negative impact on their mental health and 65% reported experiencing anxiety as a result. People are missing work, cancelling arrangements with friends, missing out on social experiences that they have been looking forward to—and paid for—and feeling like they are a burden on their family. Others may not believe them, and they may wait months if not years to see a specialist; or they have the hope of trying another preventive that might work, only to have that shatter when it is another one that does not do so, and all the while they are living with excruciating pain. They are losing friends, losing relationships and feeling like they are losing their mind.
It is a pleasure to serve under your chairmanship, Mr Mundell. I congratulate my hon. Friend the Member for Bishop Auckland (Dehenna Davison) on securing the debate. It is hard to imagine that this issue has not been discussed in Parliament for such a long time. That is especially true, as she so brilliantly articulated, given its impact on so many people in every one of our constituencies. One in seven people suffer from migraine, and over 1 million suffer from chronic migraine, so the impact on people’s lives and on families is widespread.
I am fortunate that I am not one of those one in seven people, but I have the experience of living with someone who suffers from chronic migraine. When we do not suffer from migraine, we do not understand how debilitating it can be. We cannot comprehend how it can take over someone’s life and stop them doing the things they most want to do—that they get pleasure from, that they live for. When that migraine seizes them, they just cannot do anything. They have to lie in a darkened room and cannot function in the way we expect and hope people can function.
Some of the statistics are concerning and saddening. My hon. Friend touched on the fact that 29% of respondents surveyed by the Migraine Trust had had to move from full-time to part-time work. That impacts not just what they do, but their whole family, what they can expect from life and their ambitions for the future. It can change the course of their lives. It is also concerning that 43% of those surveyed felt that their workplace did not believe them when they came in and said they had had a migraine. My hon. Friend touched on the sense of a migraine being just a bad headache. That is not what people have to live with and what they experience; this is something that seizes them totally and utterly.
We need to be more open about the wider impact that this is having on so many people. The fact that 34% feel discriminated against at work is just so wrong. I hope that by talking about this issue and highlighting its impact on so many people, we can improve understanding, not just among the Minister and those in his Department, but in workplaces right across the country, so that they can adapt and work with people who suffer. In that way, they can ensure that those people can give their best all the time while dealing with something we would not wish anyone to have to deal with.
I congratulate my hon. Friend the Member for Bishop Auckland (Dehenna Davison) on having secured this important debate. I am going to be a little bit cheeky: it is always a privilege and a delight to follow my right hon. Friend the Member for South Staffordshire (Sir Gavin Williamson, but I have absolutely no memory of him advocating radical and bold behaviour from the Dispatch Box when he was Chief Whip—in fact, quite the opposite.
Migraine treatment is a serious subject. In November last year, I was privileged to host an event for the Migraine Trust. My hon. Friend the Member for Bishop Auckland did an incredible job of setting out the history of migraine and explaining in detail the challenges that sufferers face. When I agreed to host an event for the Migraine Trust, I thought I understood migraine and recognised the symptoms and impacts and how sufferers endure the most horrible events in their lives. That was right up until I spoke to some of the sufferers who were there that evening.
We have focused on the one in seven people—the 10,000—in each of our constituencies who suffer from migraines, but I was particularly struck by the chronic migraine sufferers who were there that evening. They are triggered endlessly by such a radical thing as light, and they were having to stand in that room with dark glasses on and with ear plugs in to avoid noise. They were telling me about the food and drink they avoided rigorously, because they could identify each individual trigger that would perhaps set off a period when they would have a migraine literally every single day for days on end. It was eye-opening for me, because I thought I understood migraine after the first attack I had when I was about 10 years old.
We should not focus exclusively on our own experiences, but I remember my first attack to this day. I blame my father—I blame him for many things—because he took me to McDonald’s when I was 10 years old. The blue light in those McDonald’s in the early 1980s—I can remember where this McDonald’s was; it was in Southend—triggered a migraine in me that day, and I did not understand what was happening to me. That is the challenge for children: they do not understand and they cannot process that this is something that, if they lie down quietly and take their medications, they may get through. It impacts their education and their entire childhood because they become anxious, as my hon. Friend detailed. They become anxious and worry endlessly about when the next one will come. Of course, as we know, stress can trigger migraines, so the sheer act of worrying about the next migraine can in fact trigger one.
I commend the hon. Member for Bishop Auckland (Dehenna Davison) on not just bringing this debate, but all the work she has done on raising awareness and campaigning for those who suffer with migraine. Like many, I spent a long time not realising that I was getting migraines. I am very lucky—I do not get migraine very often, and I know I am very fortunate in that, but when I do, I am absolutely floored. I tend to get clusters due to stress, as others have mentioned. I am very fortunate that it does not happen very often, but it took me many years to realise that that was what was happening. I was very lucky that I had a GP who was able to understand what I was saying to them. I now know what my triggers are and what I need to do when it happens. That does not make it any easier to deal with, but at least I know what needs to happen.
It is common for many of us to know what migraine is, but the fact that we have not had a debate about it in this place for so long—even when so many in this Chamber alone are talking about our own personal experiences—says that, even here, it is not something that we want to talk about very often. I give huge thanks to the hon. Member for Bishop Auckland for ensuring that we are, and we definitely need to do so more often.
We have heard from others how prevalent the condition is, but we still fall so far short in addressing its stigmatising nature. We have heard others say, “It’s just a headache”, and that it is easy to look past. I suppose I was very lucky that, in one of my earliest jobs, my boss suffered from migraines, so there was a level of understanding there. But that was just fortunate circumstance, and we need to have much clearer opportunities for anyone suffering from this condition.
There has definitely been improvement, albeit the waiting times for treatment in Scotland, England and Wales are lengthening, according to the figures put out by the Migraine Trust. We all need to be doing better in that sense, but the Scottish Government are certainly supporting a very high standard in migraine care, with 86% of health boards giving access to the CGRP blockers. That is welcome, but we cannot rest until that is 100% everywhere, and we certainly cannot be complacent.
It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Bishop Auckland (Dehenna Davison) for opening the debate and sharing her personal experience of how the condition has affected her, which was very powerful for others to hear. We have heard some fantastic contributions today. We know that one in seven people in the UK are living with migraine, and that women are disproportionately affected. I agree with the Chair of the Women and Equalities Committee, the right hon. Member for Romsey and Southampton North (Caroline Nokes), that this needs to be addressed. Women are under-represented in research and development more generally and we need to understand why—beyond reproductive issues—in the women’s health strategy.
Migraine attacks can be hugely debilitating. They can last between four and 72 hours or even longer, often causing pain, vomiting and dizziness. We have heard from the right hon. Member for Romsey and Southampton North about the impact on children, and very movingly from the right hon. Member for South Staffordshire (Sir Gavin Williamson) about the all-consuming impact on family life. They affect every part of life, including social life, education and employment, yet they are often misunderstood and under-diagnosed.
Migraines affect people’s ability to access full employment, with 29% of those who suffer reporting that they have had to move from full time to part-time work, and a further 25% having left a job altogether. People listening to this debate who might think they are in control of their careers—maybe even at the Dispatch Box—will find it very powerful to understand that they are not alone. This adds to the number of people who are economically inactive because of long-term sickness, which has risen to more than 2.5 million—an increase of more than 400,000 since the start of the pandemic. That has a huge impact on our economy and on individuals’ health, wellbeing and ability to support themselves and their families.
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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.”
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.
Many survey respondents reported similar concerns. One said:
“Migraine has impacted every job, social occasion and holiday over the last 15 years...It’s caused me countless days of agony. Migraine is a curse I wouldn’t wish on my worst enemy.”
Another said:
“I can’t make plans with people due to migraines making me cancel them last minute. I missed an expensive, once in a lifetime concert opportunity that I had been waiting 12 years for as I had a migraine that day. I had to leave a friend’s funeral early and not attend his wake due to a five-day migraine.”
One said:
“I have missed many family gatherings—New Years, Anniversaries etc. I have also missed events that I have purchased tickets to as I have been too unwell, losing out on both money and experiences.”
Another said:
“I gave up working 14 years ago, stopped socialising and even dread going on holiday, and travel was the thing I always most looked forward to.”
I received an email yesterday from June about her daughter. She is 35 and her migraine attacks are so severe that, in June’s words,
“she can no longer look after her children. At this moment in time,”
she
“cannot complete a simple jigsaw with her two-year-old daughter. This is my daughter who gained a first in her degree...She is upset about missing out on so much of her children’s lives, aged 5 and 2.”
I raise these examples to show that migraine has more than just a trivial impact on the individuals who are suffering; it has a real impact on them and on their loved ones and wider circle.
Many also spoke about the impacts of migraine on their working life. Mollie had just embarked on her dream internship when migraine hit, so she was unable to complete that internship and has struggled to work since. She is not alone. Many here will know that I gave up my ministerial role, as migraine meant that I could not keep up with the additional demands of government. Research by the Migraine Trust found that 29% of people with migraine had to move from full-time to part-time work and 25% had left a job altogether. One survey respondent said:
“I have been at risk of losing my job in the past due to having to take time off for migraines.”
Another said:
“I recently lost my job due to the number of migraine related absences I had.”
For some people such as Mollie, the darkness takes over entirely. She said that
“deep inside, I still had that same passion for life that all people in their twenties do. I want nothing more than to go outside and live my life, but this condition has me trapped in my own living room. My pain is now so severe, it has impacted on my mental health so intensely I contemplate suicide every single day of my life and have almost succeeded at times simply because I want the physical pain to end”.
We are here today to help people such as Mollie. We have a responsibility to help them and the millions of others suffering through migraine who need a lifeline. By improving access to treatments we can give them that lifeline. I hope the Minister will agree to meet me and the two brilliant charities represented here today to discuss further how we can do just that together.
The loss of days worked has a wider impact on businesses and individuals, so we have to start thinking differently, not just in our hospitals but, as has been touched on, in general practice and pharmacy as well. If people were suffering from a more visible disease or condition, the Government would be not just spending £150 million a year but looking at investing so much more in treatment and research so that they could deal with it. Sadly, migraine is one of those conditions where there is not one single answer that can be rolled out to deal with what every single person is suffering.
More and more people in this country are turning to A&E to be treated for migraine, but it is not the best place for them to be treated; it is not good for the hospitals or the individual. All of us in the room will know how important it is to get the right primary care and the right level of support for people, so that they can prevent migraine as much as possible, because when it has set in, it is so much more difficult to treat.
We also see understaffing. We have 1.1 neurologists per 100,000 people in the United Kingdom, compared with four per 100,000 in France and Germany. In addition, so few GPs have the true specialist knowledge they need to be able to sit down with their patients, talk through this issue and have a proper understanding of the type and range of treatments best suited to that individual. The Minister will talk about how all GPs cover neurological conditions, including migraine, in their basic training. However, with the prevalence of migraine in society, we need general practitioners to have not just a bit of general knowledge on it, but more specialist knowledge, certainly in the larger practices. We can then get those individuals who are unfortunate enough to suffer from migraine the specialist advice, treatment and knowledge they need. As we are so short of neurologists across the NHS, we must ensure that the burden is lifted away from our hospitals.
I would put in a particular plea in relation to pharmacies. It is not always that easy to see a doctor when a migraine is starting to emerge—when the indicators that it is about to hit start to show themselves. That is why it is important to ensure that support and help are widely available. I urge the Minister to go back to his Department and use his characteristic imaginative, thoughtful and revolutionary style to encourage it to be a little more bold and radical in its thinking—to be a little more “action this day”, as opposed to having another report. There are many things that can make a difference to people’s lives very quickly. One is ensuring that we make better use of our pharmacies, thereby lifting the pressure off the wider NHS. Another is ensuring that there is better training for GPs so that larger practices have that specialist knowledge.
I will finish with a final plea. My hon. Friend the Member for Bishop Auckland mentioned CGRP blockers. We are all aware that there is not a silver bullet to this problem, but they are one of those things that give so many sufferers a little hope that there is something that can actually help. It is awful that people in many parts of the country cannot access them; they are not in a position to get the help they desperately need. I urge the Minister to go back to his Department and to look at CGRP blockers closely, along with the other actions that have been suggested. He could do something transformative for the lives of hundreds of thousands of people, and lift the misery they have to live with far too often.
My evening with the Migraine Trust talking to those chronic migraine sufferers was incredibly eye-opening and made me absolutely determined to redouble my efforts to tackle the lack of knowledge and the stigma that surrounds migraine. I was quite surprised to hear from only one constituent ahead of the debate, but I want to focus on her story, because many of the issues have been highlighted today. She has suffered from migraines for 30 years—30 years in which it has impacted every single job she has had. Not a single employer has understood that this is not just a headache, but something utterly debilitating, and that she will not be able to attend work or function normally. As a result, she has had extreme difficulties with her employers. Her ask of me is that I advocate to the Minister—and I do so now—that we should perhaps look at considering migraine as a disability, because, to be frank, it absolutely is.
My constituent also talked at length about exactly the point my hon. Friend highlighted about medications. As we have heard, there is no one silver bullet; some medications will work for some people, and some will work for others. It is almost a process of trial and error, with someone going three months with a medication that they know is not working—going through the different steps and jumping through the hoops—so that they can demonstrate that it has not worked and then move on to the next stage of medication.
I want to talk briefly about the stigma and how some of us are too embarrassed and ashamed to talk about this issue. I remember taking beta blockers for migraines when I was a Minister, so let me talk about the side effects of beta blockers and how impactful they are. When I stood at the Dispatch Box, beta blockers made me feel stupid, slow and dull. The one thing that everyone expects a Minister to do at the Dispatch Box is to answer a question immediately, wittily and with facts tripping off the tongue instantly. When I was taking beta blockers, I found that I simply could not do that. I would stand there and feel dull, detached and as if I was not really in the room.
I stopped taking beta blockers and resorted to a type of medication that is hugely stigmatised. Botox is approved by NICE for migraine and is, for me, incredibly effective, but it is incredibly expensive because I cannot get it on the NHS. I was frantically tapping on my phone—I was not sending messages; I was using the calculator—to work out how much I might have spent on Botox over the past 15 or so years. It appears to add up to a phenomenal £20,000—just to ensure that I can stand in this place, talk relatively coherently and, at times, make sense.
I remember vividly being sat in the Tea Room and not being able to think of the right word. I thought, “Well, that’s fine. We all get a little bit of brain fog when you get to my age,” but it was not that, and it got worse and worse. The longer I sat there, it was not just that I could not think of the right word; I could not think of any word, and then I found that I had been sat in the Tea Room silent for about half an hour because I could not actually speak. As I mentioned, my right hon. Friend the Member for South Staffordshire, who is sitting next to me, is a former Chief Whip, and he would no doubt have been absolutely delighted if I had gone through entire spells of not being able to speak. I am sure the current Chief Whip would also be very happy if I lost the power of speech. But it is absolutely terrifying, and has a profound impact.
I resort to expensive treatments that are socially stigmatised. Everybody assumes that it is vanity—I prefer to use the phrase, “Two birds, one stone.” The impact those have means that I can live my life, but it is not a choice available to very many people. That is the stark reality. As Monica would tell us, she wants the new CGRP medications to be more easily available. She wants them to be available in every NHS trust so that there is no postcode lottery. Most of all, she wants the stigma to be beaten down so that she never again has to explain to an employer what a migraine is, and that it is not just a headache.
It was fascinating to hear the tales of the hon. Member for Caerphilly (Wayne David) and my hon. Friend the Member for Banff and Buchan (David Duguid), who cannot be here, about not only their migraine experiences, but watching a child suffer from them. As I said, I blame my father for my migraines, and my daughter blames me for hers. There is clearly quite a significant genetic link to suffering. We need to have much more research and investigation into not only the condition more widely, but some of the specifics we have heard in this debate.
We need to reflect that stress can be a phenomenal trigger of migraine, and we therefore need to be much more holistic in the way we approach it and think about how we manage our lives. If my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) was here, she would undoubtedly be making a pitch for a new Government Department for wellbeing, and that approach could sit very firmly in that. If we address the mental health challenges around stress, we can also address the challenges of migraine. I do not pretend that we can address all of them—there is clearly a crucial and important role for medication, which needs to be much more widely available.
I finish with the thought that this is a complex, difficult subject. There is no silver bullet, but what we require in this place is a real drive from the Department to make sure it is thinking about including migraine in all of its health strategies. I stand here as the Chair of the Women and Equalities Committee, and I was really struck by the fact that women are more than twice as likely as men to suffer from migraine. If we look around this Chamber today, it appears, as ever, that it is a male problem. We cannot allow things like the women’s health strategy, which is crucial, and which I welcome, to be about stereotypical women’s conditions. We also have to have a thread that weaves through the fact that in almost every health condition, women are under-represented in research and in how it is treated. As my hon. Friend the Member for Bishop Auckland mentioned, too often we are deemed hysterical as opposed to actually ill. My final comment to the DHSC is: please, can we make sure that the impetus on the women’s health strategy is maintained and kept up, and that we do not allow it to become about just reproductive health? It has to include the whole of women’s health to make sure that we are being treated fairly.
We know that migraine attacks can signify impact on all aspects of a person’s life, as we have heard, and there is so much more that we could do. We have heard about CGRP blockers, which are one medication, but there are others. I have personally done some work looking into the potential for alternatives like psilocybin, about which we have had some debates previously in this place. I think it was last June, or thereabouts, that I met Professor Jo Neill at the University of Manchester, who highlighted some of the challenges that it faces simply in trying to research the potential for psilocybin. It is still classed as a schedule 1 drug, like crack cocaine or heroin, so the blocks to simply researching what is possible are a massive hurdle to moving forward what could be a significant and useful treatment for many people. As we have heard, not all treatments work for all people, and everybody will have the thing that works best for them. A vast body of research exists, but again, so much more could be done. I ask the Government to consider again what more they could do about those blocks in particular to make research slightly more straightforward, so that we can all have a much better understanding of what is possible.
There are glimmers of hope, and the Centre for Sustainable Delivery has published the “National Headache Pathway”, which will help to drive standards further in migraine care across the NHS, certainly in Scotland. The SNP continues to push the UK Government on the right for flexible working. There is a right to request flexible working in legislation; we think that it should be a right, not simply a request. A Migraine Trust report called “Heading in the wrong direction” said that there should be greater awareness of the pathways that exist for managing migraines, and revealed that half of Scottish health boards said that
“they had undertaken work to review their headache and migraine pathways.”
Again, that is encouraging, but a half is only a half—it is still not enough. As I have mentioned, Scotland was found to have the best access to medication, but more still needs to be done. The Migraine Trust report said:
“There are less than 80 GPs with Special Interest…for headache and migraine across the UK”.
That is simply not enough. People are very lucky if they find one with that understanding, but given that we are talking about universal healthcare, 80 GPs across the isles of the UK is nowhere near enough.
Robert Music, the chief executive of the Migraine Trust, said:
“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.”
That is simply not good enough for any of us, and we need to be pushing. I hope debates such as this help to raise that awareness, show that this is a very serious condition and that we need to be doing so much more. Dr Brendan Davies, the chairman of the British Association for the Study of Headache and consultant neurologist at Royal Stoke University Hospital, said,
“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.”
As I and my party persistently advocate for enhancing devolved powers, it will be no surprise to anyone present that we would like to see further devolution of employment powers, so that we can address the issues previously mentioned on employment and flexible working options. While not addressing treatment, that would at least help individuals to best manage their condition in a way that works for them. If we could all look to identify the best treatments, it would be beneficial not just to the individuals but to the economy.
Each passing day that the Government neglect to use their reserved powers to address workplace changes underscores the need for us to be able to make these decisions in Scotland. I hope I will hear something positive from the Minister. Everyone in here is coming from the same place; we recognise that while a great deal has been done, significantly more can be done. It is on all of us to embrace and take forward this challenge. I look forward to hearing the Minister’s response on what steps we could take both immediately and in the longer term, and I once again commend the hon. Member for Bishop Auckland on bringing today’s debate.
I am deeply concerned that the measures laid out by the Government to tackle the leading health-related causes of economic inactivity are not ambitious enough. I join the former Chief Whip, the right hon. Member for South Staffordshire, in exhorting the Government to take greater action and governance. The Access to Work scheme faces huge backlog, so we want to hear from the Minister today what the Government can do to support those suffering from debilitating migraines and help them access work.
Furthermore, support from employers is vital to everyone living with chronic migraines. We have heard a debate about whether this should be considered a disability, but even those who are identified as disabled and are working for Disability Confident employers do not report much better experiences than those working for employers that are not members of that scheme. We need more action from the Government to ensure that disabled people and those with long-term conditions such as chronic migraine can access the support they need at work.
As with too many medical conditions, waiting lists are long. Once someone is diagnosed, it can take up to 29 weeks for them to access a neurologist or headache specialist. Fourteen years of Government mismanagement have left our NHS unable to deliver a full and comprehensive range of health services, which is impacting on care and treatment for migraines.
That is why Labour will build an NHS fit for the future, providing it with the staff, technology, resources and reform that it needs to improve patient care, cutting waiting lists and ensuring timely diagnosis and treatment for the millions of people affected by migraine by getting the NHS working around the clock. That will give staff the opportunity to earn more for working weekends and evening shifts. Getting local hospitals working together will mean that the NHS can deliver the extra 2 million operations, scans and operations a year that are needed. What measures will the Minister take to tackle those waiting lists, particularly the services around neurology?
We have heard today how new treatments can give hope to those suffering from migraines. CGRP antibody medicines have been approved by NICE to prevent migraine in adults. However, as we have heard, only 52% of sufferers are offered them; people have to take a long route before becoming eligible. NICE last updated its guidance in this area in 2021. I would be interested to hear whether the Minister is having further discussions with NICE about ensuring wider access to migraine treatments.
Migraine is a condition that can be isolating and debilitating. We know that pressures on mental health services are acute, but with 78% of respondents to the Migraine Trust’s survey saying that migraine impacts their mental health and 65% reporting that they have experienced anxiety as a result of migraine, it is vital that we consider the mental health impacts of living with migraine.
I am keen to see Labour’s proposals for a whole-Government strategy to improve mental health outcomes and make early interventions becoming a reality for people. That is why the next Labour Government would implement an ambitious plan to cut waiting lists by recruiting over 8,500 additional mental health staff, providing access to mental health support in every school and delivering an open-access mental health hub for children and young people in every community. That would help to redress the current situation in which young people and children do not have sufficient understanding of the debilitating effects of this illness.
Finally, further research into migraine is really important, because we still do not fully understand what causes it; the SNP spokesman spoke very eloquently about the need for research into its causes. We would support our research community with a new regulatory innovation office, which would make Britain the best place in the world to innovate by speeding up decisions and providing clear direction based on a modern industrial strategy. The new office would help to improve outcomes for those living with migraine, tackling the NHS backlog by accelerating the approval for clinical trials, the number of which has fallen off a cliff under this Government, and delivering better access for patients to the latest treatments.
Those living with migraine should be able to access care when and where they need it, and the next Labour Government will ensure that we have the staff and resources needed to improve waiting lists and the right research environment, which would improve access to new treatments.