Access to Migraine Treatment

Philip Hollobone Excerpts

Wednesday 20th March 2024 Westminster Hall

[Dehenna Davison (Bishop Auckland) (Con)]

I beg to move,

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.

[Mr Philip Hollobone (Kettering) (Con)]

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 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.”