Access to Migraine Treatment

Caroline Nokes Excerpts

Wednesday 20th March 2024 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

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.

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.