Migraine Ireland – Demystifying stigma’s assocated with the condition

With a new CEO Pascal Derrien The Migraine Association of Ireland is providing information to those who have the condition, but also providing coping strategies to their support system (families and friends); as well providing workshops and events to the workplace, to help demystifying and bring more acceptance that migraines aren’t just a bad headache, there’s a lot more to them.

  1. What is Migraine Ireland? What is its mission and how did the company begin?

We are Ireland’s only patient charity providing support, education, information and reassurance to people suffering from migraine and other primary headache disorders. 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. 

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 triggers and patterns. 

Our mission is to empower people and optimise quality of life by creating awareness and promoting education of these conditions, encouraging further research, and seeking improved services for those affected

  1. Did you receive any support or advice when you created the company?

We were created by Audrey Craven in 1994 after her own experiences with chronic migraine left her struggling with two young children, poor medical help and no where to go for advice other than a neurologist in the UK, where she finally received a diagnosis after suffering since she was a child. She approached RTÉ’s Gay Byrne show to announce that a meeting for people with migraine was to be held in a hotel in Dublin. When the meeting took place, over 200 people attended. The Migraine Association of Ireland was born.

Audrey Craven then created the organization out of necessity, the organization grew organically as an advocacy relay to the numerous migraine sufferers in Ireland who could  finally channel their concerns and voice their needs. It has been supported by a rotating board over the years who has given directional support and strategy advice

  1. What are the most common myths about the condition? How do you go about dispelling them?

Some of the myths about migraines are:

– Migraine is just a headache

– Migraine headache can be cured by taking a paracetamol

– Migraine can be cured

– Migraine I my fault I must have done something to trigger the attack

– You can’t treat migraine in pregnancy

– People who say they have migraine are really using it as an excuse to get out of doing work, everyone gets headaches

-You must have aura or a headache for it to be migraine

We try to dispel these myths by creating awareness, offering free educational leaflets, diaries and events to the public, health care practitioners, workplaces, occupational health and HR staff, staff from government departments.

As medical knowledge of migraine is severely lacking in Ireland, we also ask medical experts who are knowledgeable about migraine to get in touch and include them in our database of experts, with their permission.

  1. What are some of your biggest success stories to date?

MAI has also been instrumental in the continuing development of Headache/Migraine clinics in Dublin, Cork and Galway.  

We were also instrumental in influencing the development and implementation of the Headache Pathway and the HSE’s National Clinical Care Programme for Neurology. 

We were also involved in 2018 in the creation of a Quick Reference Guide which was co-written by two of our medical advisors (Dr. Mary Kearney & CNS Esther Tomkins) and Consultant Neurologist (Dr. Martin Ruttledge) for the Irish College of General Practitioners with information for GPs with guidelines on how to diagnose and treat migraine. 

  We have also supported research into migraine in Ireland and have conducted a number of migraine-related studies including the ‘Quality of Life Survey’, the ‘Migraine Trigger Factor Study’ the ‘Migraine Survey.’ and ‘The My Migraine Voice Survey 2018’ 

Most recently we were involved in the development of the Sláintecare ‘Towards Self Care in Headache’ programme. In partnership with the HSE and Irish Pharmaceutical Union (IPU), the programme is developing additional services for Migraine and Headache patients in Galway, St. James’s Hospital, Tallaght University Hospital and Beaumont Hospital in Dublin. These include the creation of roles for Specialist Neurologists, Nurses and Psychologists. 

 5. You have developed several partnerships with other businesses. Could you give us more information on this?

We work in partnership with the HSE and its constituent directorates focussing on person-centred, preventative, planned and well-managed co-ordinated care and the development of self-management skills.

We are members of the Neurological Alliance of Ireland, the Disability Federation of Ireland and the European Migraine and Headache Alliance and collaborate with them frequently in campaigns surrounding chronic neurological illnesses.

We also liaise with the Occupational Health Nurses Association of Ireland who have been long-time supporters of our work. We will also link in with employment, community and youth groups as such as Men’s Sheds, Mens Health Forum Ireland, AsIAm and Autism Ireland – locally.

We collaborate with pharmaceutical companies to create awareness such as our current collaboration with Teva pharmaceuticals ‘Beyond Migraine Podcast, which consists of 6 episode bringing together leading healthcare professionals working in the area of migraine, alongside people living with the condition to address a range of topics including mental health, exercise, understanding triggers, the workplace and how to cope with an unexpected migraine.

The best thing they can do is spread word of our existence to anyone they know.

They can attend our events and let others know about us. To help with this we can send out leaflets and diaries.

Should they want to support us financially, they can become members for €30 a year or €10 if unemployed, a student or OAP. They can run fundraisers for us via the Facebook Birthday Fundraiser, do marathons or cycles for us, or simply donate to us via our website

6. If you could wave a magic wand, what would you do to make it easier for people who get migraines in the workplace?

– Understanding and knowledge of the condition by managers, HR, Occupational Health and other practitioners

– Have the laws and Department of Social Protection help and support people with migraine to allow them to support themselves when unable to work full-time and believe the person has a serious neurological condition

– Have all companies create fairer sick-leave policies

– Implement Migraine awareness training in workplaces, Government Department’s companies, etc

– Make sure the rights of people with migraine are not trampled on

– Have all companies install proper lighting, ventilation and noise reduction systems

– Have all companies be able to provide a quiet, darkened room for a migraineur to rest

7. How did the pandemic affect your services?

Due to the Coronavirus Pandemic and being unable to hold face to face meetings, we had to change our events to occur online. We got a large volume of calls initially due to the worry, stress and uncertainty of the global situation. Stress is a major trigger for migraine, and due to lockdowns the regular routines of work and school life were completely disrupted. Migraine loves routine, so this meant many migraineurs found an increase in attacks or symptoms. We created an online programme with videos on relaxation, breathing, medication, yoga and some tips on how to cope with migraine. The feedback was very positive.

8. Were there any positives you have taken from this period?

Once the uncertainty and fear began to reduce and people got used to the ideas of lockdowns, etc, we noticed that attendance for our events increased a lot. From the feedback, we learned that holding the events online suits many migraineurs.

They don’t have to travel, they don’t have to worry about harsh lighting, loud noises, strong smells, nor do they have to worry about missing the event should they experience an attack. In fact, it cuts out most of the worries that have prevented many migraineurs from attending our events in the past and gives people from different parts of the country an opportunity to hear from a greater variety of speakers. It also allows us to expand our reach to as many people as possible nationally.

  1. As a registered charity how do you go about fundraising for your services?

Most of our events are funded by HSE National Lottery Grants. We have received Unrestricted Educational Grants from Pharmaceutical Companies, Corporate grants such as the JP McManus Benevolent Fund, and Community grants from other organisations, e.g. The Wheel. We receive donations from the public and our supporters pay an annual membership.

What methods do you find most suitable?

Currently the most suitable method is the application for the HSE National Lottery Grants. They allow us to reach the entire country.

  1. Are there any other organisations in the Irish Diversity and Inclusion Sector that you are big fans of?

We are members of the Disability Federation of Ireland and the Neurological Alliance of Ireland, both groups advocate for all people with disabilities and neurological disorders for equal treatment in healthcare, workplace, and equal status in life.

We are also fans of AsIAm – Ireland’s National Autism Charity, particularly around their programme with Supervalu stores where they have developed an Autism-Friendly programme, which includes Autism-Friendly shops and shopping hours where lighting and noise are reduced to more tolerable levels for people with Autism. These hours could be beneficial to many migraineurs who find noise and lighting an issue.

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