State of the Migraine Nation

A project looking at the progress our community has made and priorities for the future

Our State of the Migraine Nation report

For the past 54 years, The Migraine Trust has worked to make sure that people affected by migraine are heard.  We’re extremely proud of the work we’ve done to advance migraine research and understanding, and the progress our community has made.  But we also know we still have a long way to go to make sure that every person with migraine has the best life chances possible.

That’s why we’ve started work on a ‘State of the Migraine Nation’ report.  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 draw our community together around a series of campaigning priorities for the future.  We hope the report will be of interest to policy makers, employers, NHS leaders, and the whole migraine community.

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 access to treatments and 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) Public Day in London on 13 September 2020.  But between then and now we’ll be doing a lot of fun and engaging activity to help inform the final report.

How can you get involved?

We want to involve people affected by migraine and the wider migraine and NHS community at every stage of the development of our report.  If you would like to get involved with our project, please consider joining our informal ‘sounding board’ of experts and people affected by migraine. We would be looking for your help with:

  • Giving us your views as we develop our policy thinking, e.g. by taking part in 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.

Latest news and publications

Evidence review series:

As part of this programme of work, we’ve commissioned three evidence reviews looking at various different aspects of migraine and the experience of living with migraine.

  • On 3 March we were delighted to publish the first review in this series, examining the characteristics of the migraine population. You can read the review here: State of the Migraine Nation – population rapid review
  • On 16 March we published the second review in this series, looking at the wider impact that migraine has on individuals, communities, society, and our economy as a whole. You can read the review here: State of the Migraine Nation – impact rapid review
  • On 31 March we published our third and final review in this series. This one is very wide-ranging, and looks at acute and preventive treatments, long-term management strategies, public health approaches to prevent migraine, challenges with diagnosis, and the barriers and enablers to ‘optimal’ migraine care in the NHS. You can read the full review here: State of the Migraine Nation – care rapid review

On 30 January 2020, we published our first discussion paper summarising what people affected by migraine have told us they would like to see change. The paper poses a series of questions that we need your help to answer. We would very grateful if you would read the paper and let us know your answers to the questions by emailing policy@migrainetrust.org or tweeting us with the hashtag #MigraineNation.

Our Chief Executive Gus Baldwin has written about some of the latest findings from our Migraine Community Survey and the challenges and opportunities ahead in a recent comment piece for the Health Service Journal.

Infographics

As part of this project, we’ll be periodically publishing a series of infographics summarising our learning as we go on.

Below are the ‘Top 10’ most commonly used reasonable adjustments that people with migraine are using to help them thrive at work.

Looking for further information?

We’ll be sharing all of the latest updates from this project in our monthly e-bulletin, which you can subscribe to by clicking here.

We’ll also be updating this page as the report develops, publishing discussion papers, our latest thinking, and any new evidence we gather.

Sponsorship

Lilly UK and Allergan are pleased to support the work of The Migraine Trust by sponsoring our State of the Migraine Nation report. Neither organisation has had, or will have, any influence over the content of anything we do as part of this programme of work.