Our new ‘State of the Migraine Nation’ project

By: Lisa Plotkin, Policy and Research Manager

We’re delighted to announce today that The Migraine Trust has started work on a ‘State of the Migraine Nation’ report looking at the care and treatment of people affected by migraine across the UK and the impact migraine has on people’s lives.

As we prepare to celebrate our 55th anniversary next year, our report will map the progress our community has made, identify the emerging issues that matter most to people with migraine today, and seek to reach a consensus across the community about where we need to focus our campaigning efforts in the future.

We hope this landmark report will provide a comprehensive insight into migraine.  We’ll be using it as our ‘green paper’ to the different governments across the UK, identifying the key opportunities and challenges facing people affected by migraine, and informing our organisation’s influencing agenda for the foreseeable future.

The report will draw on a wide evidence base, building on work already happening across the headache, neurology, disability, and wider health and care sectors.  We will also reach out to our community of tens of thousands of people affected by migraine, health professionals and other stakeholders to generate new evidence that we hope will enable us to develop future policy and make the best possible case for change.

Based on an initial consultation with members of our Volunteer Forum, we’ll be exploring the following major themes in the report:

  • Diagnosis
  • Care and treatment – including self-management
  • The migraine workforce
  • Children and young people
  • Migraine research
  • The migraine population – who, where, how big, etc.
  • Migraine’s impact on wider society, particularly at work, in education and on mental health
  • Awareness raising / public attitudes towards migraine
  • Community voice and empowerment
  • Key challenges and opportunities in each of the four UK nations

The report will be launched at our 18th Migraine Trust International Symposium (MTIS) in London in September 2020.  But between then and now we’ll be doing a lot of fun and engaging activity to help inform the final report.

We’ve already started building our new evidence base with our Migraine Community Survey and we’ve hosted workshops with a migraine support group, GPs with a special interest in headache, and our Volunteer Forum members, to help us understand our emerging themes in more detail.  We plan on continuing to regularly seek the views of the whole community throughout the development of the report.

This is where you come in!  We can’t deliver on the promise of this report without the active participation and help of the migraine community.

If you would like to get involved with this project, then please consider joining our informal ‘sounding board’ of experts and people affected by migraine.  The kinds of things we’ll be looking for your help with include:

  • Giving us your views as we develop our policy thinking, e.g. by taking surveys, feeding back on draft papers or reports, testing our messaging, and helping us plug our evidence gaps or prioritise what we explore further
  • Championing our work on social media and to your personal and professional networks. We’ll be regularly updating the migraine community on this project using the hashtag #MigraineNation – retweets very welcome!
  • Blogging for us to share your experiences, reflecting on new findings, and informing the public about this work.
  • Attending any workshops or events we may host as part of the consultation work for this project

If that sounds like fun, please email policy@migrainetrust.org Thank you so much in advance for any help you are able to give – we can’t do this work without you.

For regular updates on the report and how you can get involved, please visit the project webpage here or subscribe to our ebulletin here.