Not Just a Headache
Written by Hazel Breen, Communications and Information Officer, The Migraine Association of Ireland
2022 has been a year full of big wins for The Migraine Association of Ireland (MAI), which we are delighted to share, and which will produce exciting opportunities for 2023. These opportunities have come to fruition by building strong relationships with national and global migraine and headache associations, pharma companies, healthcare professionals and experts, pharmacists, and alternative treatment providers. We continue with our primary aim of supporting and advocating on behalf of patients.
We are delighted to share that we have been inundated with kind feedback from global organisations for being at the forefront for migraine, particularly for how visual we have become online and our Migraine at Work initiatives, which is a huge compliment to the MAI and everyone we work closely with, as we are being recognised as a leader in migraine worldwide. And that’s a big achievement for a small island! However, 2022 was not without its challenges.
COVID-19 challenges for people living with migraine nationwide produced a spike in Chronic Migraine (at least 15 days of migraine per month) cases. This was due to many factors including stress which is a huge trigger for migraine. The return to On-site work also presented challenges to migraine patients as they had become used to their more stable ‘work from home’ environment as migraine loves routine.
In addition, access to care and medication was highly challenging for migraine patients and healthcare professionals throughout the year due to many factors; some of which included medication shortages and a transition to a high-tech drug protocol processes which while necessary, required a lot of time for Neurologists and their teams to work through. The medication approval process in Ireland remains extremely slow in comparison to neighbouring countries.
For example: Irelands medication approval process timeframe is broken down as follows:
• NCPE Rapid Review and NCPE HTA takes 242 days.
• HSE price discussions and drugs review and approval takes 307 days.
Totalling 549 days.
Belgium’s medication approval process timeframe is broken down as follows:
• INAMI-RIZIV Assessment, CRM/ CTG Assessment, Minister Recommendation and Postminister.
Recommendation takes 210 days in total.
Headache clinic wait lists remain long for migraine patients to access specialist care from Neurologists. However, the Sláintecare Headache Pathway Pilot Programme created a more direct route to care and reductions across emergency departments of migraine patients presenting for acute care. (More on this in the MAI & Sláintecare section) One of the biggest challenges we faced as an association in 2022 was a slow turnaround to funding applications to third parties outside of the HSE. In addition, one of our largest and long-term funding applications was denied. This funding was intended to cover a large proportion of operational costs over the next three years.
Therefore, we find ourselves in unpredictable waters but the team is working relentlessly to problem solve and think of ways to generate this funding elsewhere, leaving no stone unturned. This means reducing costs where possible and endeavouring to generate funding from other avenues. MAI are highly optimistic that we can turn this negative outcome into a positive one, so we can continue to fight the good fight! On a more positive note, we had many great achievements throughout 2022.
MAI & Sláintecare The release of the Sláintecare Headache Pathway Pilot Programme success to date now lays the foundation for a national rollout for this new headache pathway to care across 10 headache clinic locations nationwide. MAI Events Migraine Ireland had a jam-packed year full of patient, workplace, awareness, fundraising events list is as follows:
– Our inaugural Migraine Ireland Cycling Event took place on June 25th, 2022, with the legendary Irish Pro cyclist, Sean Kelly (King Kelly) and 100 cyclists who cycled 50KM and 100KM flat routes from The Avon in Co. Wicklow.
– We ran over 20 Patient Focused highly successful events covering multiple areas from national and global experts which were very well received by our patient community. These events included 3 Self-Management Courses for Chronic Migraine, 3 Healthcare Professional events covering Hospital A&E, GPs and Pharmacies, Vestibular Migraine, Migraine in Men: Emotional Coping Strategies, Families and Carers of Migraineurs, Non-Headache Symptoms with Migraine and much more.
– Our Workplace Events have hit the ground running. As this was a new service delivery by MAI starting late in 2021, since then we have had over 20 Workplace Events with employers who know that to get the best from their employee, they need to look after their wellbeing and be informed of reasonable accommodations they can make as 1 in 10 people live with migraine in Ireland. Communications Our comprehensive communications plan generated large volumes of awareness throughout 2022.
– In the first 6 months we reached 1,000,000 people online through our website and social media channels. We managed to secure over 60 pieces of media coverage on TV and Radio, as well as Ireland’s top publications.
– We created a peer-to-peer private supporters’ platform for migraineurs who sign up for Supportership with MAI where they can post, comment or chat between themselves. Much like their very own private social media platform!
– We introduced a new Fundraiser platform by Enthuse which allows us to create our own events, receive donations and allow people to set up online Fundraisers securely which has been a great addition to MAI and a seamless and trustworthy tool to use.
Exciting times ahead for 2023 The team at MAI are excited to see how 2023 unfolds as we have so many great opportunities in the pipeline, such as:
– A potential new medical resource joining The Migraine Association of Ireland which will be hugely beneficial to migraine patients, healthcare professionals nationwide and the team at MAI.
– Website revamp
– This project when complete will include dedicated resources on our website for patients, workplace, and healthcare professionals.
– MAI plan to produce an experiential video in 2023, we are awaiting funding and will get started as soon as we can.
– Rollout of Migraine FittnessTM at Work Programme
– a learning tool for employers to reduce migraine stigma and create more accessible workplaces
– Digitisation of Brainstorm Magazine and our book.
With 2023 approaching, our main goal is to secure funding so that we can continue to work closely with patients, healthcare professionals, workplaces and interested third parties nationwide and worldwide to increase migraine awareness, to advocate for migraineurs nationwide, educate and support those with migraine in Ireland, provide updates on medication and care, support healthcare services, and help over 600,000 people in Ireland living with migraine to manage their condition.
For more information on migraine, please visit www.migraine.ie
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