Waiting times for headache and migraine referrals in Northern Ireland are 'some of the worst in the UK', report reveals

Andrea Quinn, 33, said: "Migraine is a big part of my life. It’s something I have to always think about and plan ahead for, making sure I have medication with me when I need it, and weighing up the risks of migraine triggers. For me, activities like travelling can be difficult, with the change in routine, noise and bright lights of airports and train stations etc. I have to plan around that, quite often making sure the day after a trip is a quiet one.

“I definitely have a tendency to push through and to mask symptoms, particularly pain. Friends have commented before that I “look completely fine” and that you’d never know I had migraine. There have been so many times that I’ve been out at an event or delivered a big presentation at work with a smile on my face, only to get home, burst into tears and fall into bed.”

In its ‘Insights report: The impact of migraine on people in Northern Ireland and opportunities to improve care’, the Migraine Trust 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.

It said 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.

The charity found that waiting times for headache and migraine referrals in Northern Ireland are some of the worst in the UK, with an average wait of more than two years across the Health and Social Care Trust (HSCTs) areas that were able to provide data.

It also revealed that four out of five Health and Social Care Trusts (HSCTs) in Northern Ireland do not have a headache nurse. Out of 25 neurological specialists in Northern Ireland, only three are headache specialists, whilst half of NI’s neurological specialists are concentrated in Belfast.

​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.

Andrea, a senior communications officer at The Migraine Trust, added: “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.”

​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.”

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 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.

​Rob Music, chief executive, The Migraine Trust added: “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.”