Impacting mental health, relationships, and ability to work
By Lucy Ashton
Jackie Baillie, MSP for Dumbarton Constituency, is supporting Migraine Awareness Week to call attention to the struggle 10 million people face and the need for better care.
Migraine is one of the most disabling conditions in the world, affecting one in seven people in the UK.
A new report by the UK’s leading migraine charity The Migraine Trust reveals the legacy of pain and damaged lives caused by the UK’s broken migraine healthcare system.
From being dismissed as ‘just having a headache’, waiting years to be diagnosed, to a lack of access to specialist care and new treatment, the report launched for Migraine Awareness Week exposes a broken healthcare system that migraine patients struggle to navigate.
The Migraine Trust says this is leading to the worsening of people’s migraine, limiting their ability to carry out their lives with a huge impact on personal relationships, work and mental health. It is calling for an urgent review of migraine healthcare.
Jackie Baillie explained: “I’m supporting Migraine Awareness Week to lend my voice to the ten million people in the UK who live with migraine, and to call for better migraine care. This new work by The Migraine Trust shows we badly need investment in training and specialist services, to lift the burden migraine places on people and our NHS.
“Acting to improve migraine care will improve quality of life for millions of people, and will also reduce work days lost to illness and relieve pressure on A&E departments. Better care could save many more of the 43 million work days that are lost to migraine in the UK each year, and avoid most of the 16,500 emergency admissions for headaches and migraine attacks if we simply give people better care. Change is urgently needed.”
Key problems in migraine healthcare
The report, Dismissed for too long, found a wide range of issues with migraine healthcare including:
- Slow or no diagnosis: People with migraine are often only diagnosed several years after starting to have migraine attacks
- Lack of access to specialist care: Most migraine patients never see a headache specialist, including those with chronic migraine who are referred to neurologists who may not have an expertise in migraine.
- Lack of access to approved medications: the charity says problems in migraine healthcare have intensified over the last year as many people who are eligible for new migraine medication have struggled to access it, despite it being approved for use on the NHS.
“I have suffered approximately ten migraine attacks a month for over 45 years and am desperate to try the new CGRP monoclonal antibody treatment, but was told I had to try other cheaper medications first. Over 12 months I tried an array of alternatives, all with terrible side effects, all of which failed to reduce the number of migraine attacks. Then, I was devastatingly told that CGRP treatment wasn’t yet available in my area due to a pharmacy contract problem. I continue to suffer terrible migraines every month and am deprived this life-changing new medicine that I am entitled to because of unacceptable problems with an NHS pharmacy contract.”
Lee Walker, lives with migraine
Significant impact on quality of life
The charity’s research showed that migraine has a very negative impact on the lives of people affected by it, including:
almost a third (32%) said it negatively affected their mental health
- almost a third (32%) said it negatively affected their overall health
- three in ten (30%) said it negatively affected their working life
- a quarter said it negatively affected their (25%) family life
- over a quarter said it negatively affected their (27%) social life
“I think it is difficult for people who don’t have migraine to grasp the impact it has on your daily life. My main issue during a lifetime of battling with migraine is that I am often not taken seriously by the healthcare system. Years ago I was prescribed paracetamol for pain management and told that ‘there’s not much else we can do about a headache’.”
Barbara Tesio-Ryan, lives with migraine
“I had been recording symptoms and attacks for several months before visiting my GP where I was merely given sumatriptan for some years (something I should never have been allowed to take). I sometimes wonder if there is permanent damage to my brain from not getting prompt and suitable treatment. It’s clear the medical profession has a long way to go to understand and acknowledge the impact of migraine.”
Selina Wells, lives with migraine
“Despite the widespread and wide-ranging impacts of migraine on our population, this report has highlighted that migraine is largely absent from NHS plans or local public health strategies, receives very little funding for research, and access to specialist care is patchy and inconsistent across the country. This must change. Our support services at The Migraine Trust are contacted daily from people who have had to fight to be diagnosed correctly, who have to wait months to see a specialist; or who are unable to access the NHS-approved medication they are eligible for.”
Rob Music, Chief Executive of The Migraine Trust
Recommendations on how problems can be addressed
The Migraine Trust has set out a range of proposals to be considered in order to address these issues which include:
- Everyone visiting their GP for head pain should be assessed for migraine
- Making migraine treatment and care a core part of junior doctor and GP training
- Everyone diagnosed with migraine should receive an individualised care plan
- Health systems should review migraine needs, plan services to meet them, ensure adequate access to specialists and appoint a Migraine/Headache Lead
- Each UK nation’s government should support the recruitment of additional headache specialists and consultant neurologists, to bring us into line with the levels in other European countries like France and Germany
- Public awareness campaigns should be developed to improve understanding of the range of migraine symptoms, as well as to reduce the stigma associated with migraine