As reported by The Migraine Trust, their new report sheds light on the struggles faced by people with migraines, as they battle misconceptions, limited specialist care, and unequal treatment options, leaving many to cope alone with debilitating symptoms and an impact on mental health and work life
One in seven adults (10 million) in the UK experience migraine. Over one million live with chronic migraine, meaning they experience headaches for at least 15 days a month with other symptoms for eight of these, for at least three months.
In its report ‘Heading the wrong way’, the charity heard from many people who feel health professionals, especially in primary care, do not understand migraines. 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.
The impact of migraine goes far beyond pain. A third of callers to The Migraine Trust’s helpline report a decline in mental health due to their migraines. Migraine can affect all areas of life including the ability to work and maintain relationships, leaving many of those affected feeling isolated.
The charity says that migraine is not being taken seriously as a health condition and those with the condition are being let down. It is calling for greater awareness of, and adherence to, pathways that exist for managing the condition, and increased education to support health professionals in identifying and managing migraine. It is also highlighting the need for more specialist centres.
The Migraine Trust carried out patient surveys and sent Freedom of Information requests to Integrated Care Systems (ICSs), Trusts in England and Northern Ireland and Health Boards in Scotland and Wales to assess the experience of, and variation in care. It found a lack of understanding, and a limited specialist workforce in primary care mean patients are often not getting the treatments and care they need.
Key findings include:
Provision of specialist headache clinics is patchy (only 26 out of 42 ICSs in England report having one, along with only 3 of 7 Health Boards in Wales, 7 of 14 Health Boards in Scotland and 3 of 5 Health and Social Care Trusts in Northern Ireland)
According to FOI responses, waiting times for specialist care for migraine have increased(1):
In England nearly doubled from 15 weeks in 2021 to an average of 29 weeks in 2023
In Wales 27 weeks up from 23 weeks in 2021
In Scotland 29 weeks up from 9 weeks in 2021
In Northern Ireland, some Health and Social Care Trusts reported waiting times of 13 to 20 weeks for “urgent” referrals and waits of 18 months for more “routine” cases
Availability of CGRP treatments is inconsistent (available in 29% of responding NHS Trusts, 57% of Welsh Health Boards and 60% Northern Ireland Health and Social Care Trusts)
Of those eligible for CGRP treatments only 52% had been offered it, with many reporting that their GP, neurologist or the local NHS does not prescribe it; that there was a lack of funds available to prescribe it; or that waiting lists are too long so clinicians were opting not to prescribe
A&E can be the appropriate route for patients with certain symptoms, however, hospital admissions for migraine are increasing (2). NHS England estimates that 16,500 emergency admissions for headache and migraine could be avoided with the right care pathway.(3)
Robert Music, Chief Executive, of The Migraine Trust, said: “Not only are patients struggling, but poor management of migraine is putting unnecessary additional strain on an already struggling NHS. We are seeing rising A&E admissions for migraines across the UK. There is a shortage of GPs, consultants and nurses specialising in headaches to meet the need that we know exists, and a broad lack of understanding of the condition, meaning patients are not being treated in the right place or at the right time, if at all.”
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 adaptions and might also be supported by community pharmacies. 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 reported incorrect referrals, long waiting lists for specialist support or simply feeling dismissed.
Lack of understanding around migraines impacts all areas of life. A survey by The Migraine Trust found 29% of respondents had moved from full-time to part-time work due to their migraines 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(4).
When asked about their primary care experience, patients highlighted wide variation in care, much of which goes against recommended NHS pathways, contributing to delays in accessing appropriate treatment. This includes almost 4 in 10 (38%) not being offered preventive treatment for their frequent migraine attacks by their GP before being referred to see a specialist, more than a third (36%) not being advised to increase the dosage of preventive medication if it was not working and the majority (67%) were not advised about the risks of medication overuse headache by their GP.
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