Migraine Ireland - advocating on behalf of migraine and clusterheads in Ireland

Could you briefly introduce Migraine Ireland for our readers who might not be familiar with your work?

o We are Ireland’s only patient charity providing support, education, information and reassurance to people suffering from migraine and other primary headache disorders, including Cluster Headache. We provide free educational courses on self management and understanding migraine for people with migraine, and certified health professional courses for GPs and other HCPs.

o We also lobby and advocate on behalf of living with migraine and other headache disorders for access to new treatments and to ensure they have access to current treatments. We operate an Information Line and produce a member’s magazine three times a year with national and international news of interest to those with migraine. We also have a variety of information resources on social media and we have a selection of information leaflets including our migraine diary to help track and identify your triggers.

What is the core mission of your organisation?

To provide support, education, information and reassurance to people and raise awareness of these disabling conditions

A key part of your work is raising awareness. Why is this so crucial for a condition like cluster headaches?

Primary headache conditions like Cluster Headache are vastly misunderstood, underestimated and often dismissed, even by those in the medical community. A headache is a headache, just take a pill and you’ll be fine; is still a common opinion. However, the WHO continually cites migraine as one of the leading causes of disability worldwide in their Global Burden of Disease Reports. Even so, patients with these conditions are too often dismissed and their symptoms passed off as stress, dehydration, and in the case of many women, hormonal issues. The pain, disability and risks of these disorders need to be highlighted so that people living with them can live their lives to the fullest with appropriate treatment, understanding and help when needed.

How do you work with medical professionals and researchers to improve the lives of patients?

We work with medical professionals with an interest or expertise in Headache Disorders to educate both the public, and their medical colleagues alike on these conditions. We offer accredited continued professional development talks, for medical professionals, public information talks where a medical professional will speak to create awareness, we have a medical professional advisory panel to ensure our information is accurate and up to date, and we participate in research projects by both medical professional and those in university. We also support the various headache clinics in Irish hospitals and signpost anyone who needs it to people who can best help them.

For a person who has just been diagnosed or suspecting CH, what is the most important first step Migraine Ireland can help them with?

As we are not a medical charity, we do not offer diagnosis or medication advice, however, we can supply people with general information about the condition and the various treatments available, allowing them to bring this to their medical professionals. We provide a signposting service to help people find services they are seeking, in the hopes that this bridges the gap in what can often be a patchy healthcare landscape. We offer continuous support to the person along their journey with public information events; we also offer a range of self-empowerment and self-compassion courses with the backing and support of mental health medical professionals. We also signpost people to other organisations such as O 2 companies BOC Ireland, Air Liquide, and OUCH UK where appropriate.

Could you tell us about your advice line and what someone can expect when they reach out?

Our information line offers support and information to whoever calls. Although is it not a mental health support line, People are listened to with compassion and understanding, they are not dismissed, regardless of their experiences or knowledge. We are happy to speak to anyone who needs information, be they living with various conditions, or if they are family, friends, teachers, colleagues, employers, etc of people who live with these conditions. We will then signpost to wherever is appropriate or simply send out information via mail or email if required.

Beyond medical advice, cluster headaches have a huge impact on daily life. What kind of support do you offer for challenges with employment, benefits, and family life?

o We are unable to offer legal supports for employment, benefits, etc, however, we offer information support in the form of letters to employers, social protection and government departments to support a person at work or looking for benefits. We offer letters of support to back up applications for Reasonable Accommodations in workplaces, schools, during state exams, and work with 3 rd level disability organisations to keep these supports going beyond school. We signpost them to free legal aid and advice where necessary. We also go into workplaces and do talks for staff and employers to raise awareness and increase compassion for colleagues and employees.

How can your online community help sufferers?

We are a small organisation so do not have facebook groups, etc however we can put people in touch with others who have similar experiences. People can also talk to each other through our social media pages, and in our members-only forum where we provide a safe space so they can support each other, exchange tips and experiences.

How Can our Readers help Migraine Ireland?

Very simply they can follow our social media, repost our posts, come to our events (they’re all online and free of charge) and spread the word to anyone they meet who may be interested.

What is the most direct way for our readers to contribute financially?

Donations can be made via our website https://migraine.ie/donate/ When booking our events, donations can be made via the ticketing process, or they can sign up for membership. People are also welcome to fundraise for us if they wish to. We’ve also been lucky to have received donations from wills from time to time so that is another option. Anything a person can afford, is very welcome.

What does becoming a member of Migraine Ireland entail?

o Becoming a member or paid supporter of Migraine Ireland costs €36 yearly/€24 for unwaged or OAP – This can be one some annually, or people can choose a monthly payment of €3/€2 per month. Medical Professional membership costs €40 per year. Members will get:

o Access to our Supporters Private Platform (Exclusively for migraineurs)

o Quarterly BrainStorm Magazine

o Quarterly Email Newsletter

o Our NEW Migraine friendly ‘Supporters ONLY Private Platform’ allows you to join a community of people living with migraine on your very own platform (much like your own social media platform) but easier to use. You can create your own posts, talk to your peers here, comment on updates and create conversations between each other and the Migraine Ireland team.

o Migraine Ireland post important migraine related updates nearly every day and notify you through email when a new post is released. Please note, we will never bombard your email, we post one to two times daily max and only two times when there is lots of important news or event information to share.

We look forward to seeing you there! Your support will help us greatly.

Who can become a member?

Anyone over the age of 17

For those who can’t contribute financially, what are some other meaningful ways they can get involved and support your mission?

Again, follow us on social media, share our information, posts, etc. Come to our events and highlight them to others. Watch our YouTube channel to see videos of past talks. Generally, spread the word about us and our services. We are very happy for people to do this for us as we appreciate that money is very scarce everywhere at the moment.

Looking ahead, what are the biggest challenges for Migraine Ireland, and what are your main goals for the coming year?

Our challenges continue to be battling the myths of migraine and other headache disorders. We will continue to do so, but like so many invisible disorders, if it’s not seen it’s not believed. We hope to help roll out headache programmes and care pathways across all the Irish Hospitals and recruit more interested medical professionals

We will continue to advocate for patients and support them on their individual journeys and provide information, support and education to anyone who needs it.

Any other message?

We’re a small organisation (4 staff) but working with other organisations such as My Clusters, OUCH UK, The Migraine Trust, etc our voices can be heard and at some stage these headache disorders will be treated with the level of respect and urgency that they deserve.