Migraine care is lacking across the UK but for Northern Ireland, the situation is dire

Charity calls for speed in publication of delayed neurology review and warns of impact on 270,000 with migraine in Northern Ireland

23rd May 2024

A new report launched today by The Migraine Trust outlines the significant barriers to migraine care for those living in Northern Ireland, and the severe and wide-ranging repercussions on the 270,000 people in Northern Ireland living with the condition.

Migraine is a long term, painful neurological condition. Symptoms can include head pain, nausea and vomiting, sensitivity to light, sound and smell, and visual disturbances. The condition can severely impact people’s ability to lead a full and active life, affecting social lives, employment opportunities and overall wellbeing.

In its ‘Insights report: The impact of migraine on people in Northern Ireland and opportunities to improve care’, the charity heard from leading clinical experts in headache care, as well as patient advocates living with migraine themselves, about the shortfalls in support in both primary and secondary care.

For many people living with migraine, delays in diagnosis, repeated appointments before being able to access suitable treatments and lengthy waiting lists can have an impact on their physical and mental health, their ability to work, and their social and family lives.

Key findings include:

• Freedom of Information responses for Northern Ireland found that waiting times for headache and migraine referrals are some of the worst in the UK, with an average wait of more than two years across the Health and Social Care Trust areas that were able to provide data.
• Four of five HSCTs do not have a headache nurse.
• Out of 25 neurological specialists in Northern Ireland, only three are headache specialists.
• Two of five HSCTs do not directly provide calcitonin gene-related peptide monoclonal antibodies (CGRP mAbs), a newer class of medication developed specifically for people with migraine.
• Half of Northern Ireland’s neurological specialists are concentrated in Belfast.
Previous research from The Migraine Trust found that UK-wide, 78% of respondents impacted by migraine reported it affects their mental health, 25% had left their job due to migraine, and 60% of people with migraine feel it had significantly impacted on their relationship with their partner or spouse. The charity warns that ongoing poor management of migraine care only stands to exacerbate these impacts.

Dr Thomas Peukert, Consultant Neurologist, Belfast Health and Social Care Trust said

“migraine is the most common cause of neurological disability. Unfortunately, migraine remains underfunded in the NHS compared to other neurological conditions. This translates into a huge economic burden to individuals and society.”

Following on from the charity’s 2023 report, ‘Heading in the wrong direction’, which highlighted the lack of specialist care and unequal provision of treatments across the UK, today’s report expands on the unique difficulties faced within Northern Ireland’s strained healthcare system.

Andrea Quinn, Senior Communications Officer at The Migraine Trust and migraine patient:

“We don’t want to be clogging up waiting lists. Access to the right care in the right setting benefits not just us as migraine patients but the health service more broadly. It is incredibly frustrating to feel stuck in the system, and to know there are treatments available that could help but being unable to access them.”

A Regional Review of Neurology Services, looking at the optimum configuration of neurology services for the next 10 to 15 years, is currently being finalised by the Northern Ireland Department for Health, however it is now five years since its original scheduled release date.
The Migraine Trust is calling for speed in the release and implementation of recommendations of the above review.

Additionally, the charity wants policymakers to take migraine seriously, and invest in long-term migraine care, through both primary and specialist care workforces, to allow people with migraine to receive the care they need in the most appropriate setting, easing the strain on both individuals with migraine and the increasingly stretched healthcare system.

Beyond the costs of inefficient healthcare practices, the costs of migraine extend to the economy more broadly. An estimate commissioned by The Migraine Trust put the cost of migraine to the UK economy at potentially £4.5bn from 44m lost workdays, though this could be higher still if reduced productivity from presenteeism is taken into account (up to £9bn). Improved access to treatments that reduce the frequency and intensity of migraine attacks could see gains in terms of reclaimed productivity in the economy.

Person who lives with migraine:

“Migraine has a very severe and negative impact on my life and on the people I care about. When you are struggling to keep your life together, it is almost impossible to navigate the NHS system or get the appropriate care from your GP.
Through luck, I was referred to an Occupational Therapist in the Condition Management Programme. That changed everything. She gave me the confidence to tackle the GPs for a referral to the Headache Clinic (which I previously didn’t know even existed). After a long wait, the clinic has now given me to access the newer treatments I couldn’t get through the GP.
You need insider knowledge to get proper treatment and it shouldn’t be like that.”

Rob Music, Chief Executive, The Migraine Trust:

“Migraine can have a significant impact on the lives of those who have the condition. Inequity of access to suitable care and treatment only compounds this impact, leaving people feeling isolated and hopeless. This report highlights the extent of the barriers to good quality migraine care that exist in Northern Ireland, and now that the Northern Ireland Executive has been restored, we want to see swift and positive changes that will allow people with migraine in Northern Ireland to access the care they need.”

You can read the full ‘Insights report: The impact of migraine on people in Northern Ireland and opportunities to improve care’, here.