Access to Migraine Treatment

Paul Girvan Excerpts

Wednesday 20th March 2024 Westminster Hall

[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.

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.”

[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.

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.

--- Later in debate ---

[Dehenna Davison]

I am very grateful to the Minister for his remarks, and particularly for the fact that he has already actioned some of the points we raised by asking the MHRA to look into primary care prescribing. He also said that the Under-Secretary of State for Health and Social Care, my right hon. Friend the Member for South Northamptonshire (Dame Andrea Leadsom), is potentially exploring the further use of pharmacies, which is clearly a positive step.

My right hon. Friend the Member for South Staffordshire (Sir Gavin Williamson) made the brilliant comment that we clearly need to tackle migraine differently. I hope there can be a bit more oomph from the Department when it comes to recommendations from NICE. I appreciate that independence is crucial, but by raising awareness as we are doing today, and hopefully with some input from the Minister, we can perhaps still ask for another review without asking NICE specifically what to put into its guidance.

I am grateful to all right hon. and hon. Members who attended. They made some very interesting points and raised the cases of constituents living with this horrible condition. My right hon. Friend the Member for South Staffordshire talked about the wider impact of migraines, which many of us touched on. This is a health condition that does not just come on every so often; it has a wider impact on a person’s life and causes anxiety. It is about the in-between days when they are wondering when an attack might next strike. I am grateful to the Minister for recognising that and for talking about his own family’s experience of migraine, given that his sister suffers from the condition.

I am grateful to my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) and the hon. Member for Midlothian (Owen Thompson) for sharing their experiences of migraine. Though their experiences were different in some ways, they were very similar in others, such as in the severity of attacks and the anxiety about how to tackle them. I was absolutely staggered by the amount that my right hon. Friend the Member for Romsey and Southampton North has spent on tackling her migraine. Botox can be an incredibly effective treatment, yet so many are unable to access it on the NHS, despite it being an approved treatment. That is another lifeline that we need to address. She raised the case of Monica, her constituent, who has had issues with her employer. I completely agree with my right hon. Friend and the hon. Member for Midlothian that migraine should formally be considered a disability, so that employers not only should, but have to put in place reasonable adjustments.

The hon. Member for East Londonderry—

[Paul Girvan]

South Antrim.

[Dehenna Davison]

South Antrim. I have my DUP colleagues confused—I can only apologise. It is because they both share a brilliant passion for Northern Ireland and for tackling the issue of migraine. I thank the hon. Member for South Antrim (Paul Girvan) for raising DWP assessments and the difficulty people have in accessing support when they are out of work as a result of chronic migraine. We have heard the statistics about how many people unfortunately have to give up work as a result of this disease, so hopefully we can take that up with DWP next time so that it can review its processes. Certainly, having chronic migraine listed as a formal disability would be a positive step in helping ensure that that is done.

The hon. Member also discussed the point around the devolved bodies. We heard some great testimonies from the SNP spokesperson, the hon. Member for Midlothian, about the positive steps being taken in Scotland and particularly the number of Scottish trusts that allow CGRP blockers to be prescribed. As he rightly said, that number is still not 100% and we need to go further to make sure that new, innovative treatment options that can work for so many people can be accessed by all those who are struggling.

I am grateful to the shadow Minister, the hon. Member for Bristol South (Karin Smyth), not only for responding here, but for getting in touch with me in advance of today’s debate so we could share a few notes about the impact chronic migraine can have. She is right to raise the impact on children—I did not particularly cover that in my speech, but my right hon. Friend the Member for Romsey and Southampton North touched upon it, given that she started experiencing migraine at such a young age. In some ways, it is even more terrifying for children because there is that lack of awareness of what is happening when a migraine attack strikes. Again, that is one example of how we need to get this right, in order to give people a better quality of life.

The hon. Member for Bristol South also talked about long-term workplace inactivity. Frankly, the best way we can tackle that is by getting people earlier diagnosis and earlier treatment that actually works. Part of that, as has been mentioned, comes down to knowledge and I am grateful to the Minister for talking about how medical training is outlined and done. It is great to hear that there are e-learning modules specifically on headache and migraine available for GPs and other medical practitioners to access—but I say we need to be bolder and I say we need to go further.

Off the back of this debate, therefore, I will be contacting some of those medical bodies to ensure they know just how debilitating and difficult migraine can be, in the hope that they can ensure not only that their educational modules are top notch and delivering the right information to the right people, but that people are taking those modules. They are not an optional extra; they are an absolute necessity.

I have probably missed some bits—yes, I have: I am grateful to the hon. Member for Greenwich and Woolwich (Matthew Pennycook), who is no longer in his place, for raising a point about knowledge, particularly of hormonal migraine, which many people experience. It is right that we continue to research that and make sure that medical practitioners have the knowledge they need.

My hon. Friend the Member for Kettering (Mr Hollobone) also raised the experience of his constituent. Again, it was another human story that tells the tale of chronic migraine; another human story that tells the tale of just how difficult this blooming thing can be. I am grateful to all hon. Members here today for taking part in the debate, for getting involved and for showing that there are people here in Parliament who care. To people watching at home, I say, “We are here, we hear you and we are going to do all we can to make this better.” I will keep nagging the Minister until we really see improvements in migraine care.

Question put and agreed to.

Resolved,

That this House has considered access to migraine treatment.