Many people suffering with migraines are being let down as the condition is not taken seriously, Natasha Asghar MS has said.
The South East Wales politician backed calls for better migraine care in Wales after meeting with patient advocates and staff from The Migraine Trust this week.
One in seven adults experience migraine. Over one million people in the UK live with chronic migraine, meaning they experience headache for at least 15 days a month for at least three months and migraine symptoms on most of these days.
The impact of migraine goes far beyond pain. Migraine can affect all areas of life, including ability to work and maintain relationships, leaving many of those affected feeling isolated.
A survey by The Migraine Trust found 29% of respondents had moved from full-time to part-time work due to their migraine and 25% had left a job as a result of it (rising to a third among those with chronic migraine). 43% felt their workplace had not believed them when they had taken sick leave due to a migraine attack and 34% had felt discriminated against at work.
For Migraine Awareness Week in September, The Migraine Trust released a report that showed how people with migraine are struggling to access appropriate diagnoses and treatments. Misunderstanding of the condition as ‘just a headache’, lack of specialist care and unequal provision of treatments means many are left struggling alone with debilitating symptoms.
In its report ‘Heading in the wrong direction’, the charity heard from many people who feel health professionals, especially in primary care, do not understand migraine. They report having their pain dismissed, being told nothing can be done for them and waiting years to access treatments. As a result, many are left feeling depressed, frustrated and unable to cope.
Most people who live with migraine should be successfully supported in primary care by their GP, who can diagnose migraine and advise on medication options and lifestyle adaptations. However, some will need to be referred to a healthcare professional who specialises in migraine, such as a GP with a Special Interest in headache or a neurologist. High numbers of patients reported incorrect referrals, long waiting lists for specialist support or simply that they feel dismissed.
Lisa, who lives with chronic migraine, said: “I have had migraine since I was 14 years old. My migraine started as severe but infrequent pain once or twice a month. I would vomit and have to lie in a dark room. Over the years the intensity and variety of symptoms have increased, especially after the birth of both my children. I would have around 25 migraine episodes a month. Almost daily I suffer from excruciating head pain, loss of vision and numbness on one side.
“Further, migraines are not the only challenge in my life - my 12-year old son is severely disabled and under palliative care. He requires 24-hour care and treatments. I don’t have the luxury of retiring to a dark room to wait out the migraine.
"When I went private, I was finally diagnosed with chronic migraine. It took years to get referred to the NHS migraine service, as the GP was unaware of its existence. Currently I’m having Botox via the NHS migraine clinic - it helps but only slightly. I’ve gone down from 25 migraine days a month to 11-18. I am glad that after many years of struggling I got into the migraine service, but a lot needs to improve. The impact of migraine is so much more than the pain - it affects every area of life and people living with migraine deserve so much better than the care we currently get.”
Natasha Asghar MS said: “It was very powerful to meet people impacted by migraine and hear how it disrupts their personal lives and ability to work, and the struggles too many of them have faced to secure treatment. Migraine is not being taken seriously as a health condition and many of those with the condition are clearly being let down.”
Rob Music, Chief Executive of The Migraine Trust, said: “We are pleased to have Natasha’s support in our campaign for better migraine care in Wales. We know that many people are suffering unnecessarily because of patchy GP knowledge of migraine care and long waiting lists for specialist appointments. Improvements to migraine care will have an enormous impact of many peoples’ quality of life, ability to work and wellbeing.”