(5 months, 2 weeks ago)
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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?
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.”