Migraine Awareness Week

Each September we use this week to raise general awareness of migraine as a serious public health issue and to reduce stigma

While there is an increasing awareness of migraine and understanding of what it is, not many would disagree that we are no where near the level of awareness and understanding that we need to reach. And we do need to reach it because lack of awareness and understanding of migraine seriously impacts our lives, with too many people not fully realising what it is like to live with this condition.

That’s why it is so crucial for us to maximize the opportunity that Migraine Awareness Week gives us. Running from 5-11 September in 2021, it is a moment in the year when everyone affected by migraine and everyone working to help those affected work together to raise the profile of migraine as a complex neurological condition and dispel any ideas that it is ‘just a headache’.

Migraine Awareness Week 2021

Despite calcitonin gene-related peptide (CGRP) monoclonal antibody medication (MAB) being approved in all of the four nations, not everyone who is eligible for it has been able to access it.

A postcode lottery has emerged where people living with migraine can access this medication in one area but not another. Our research has found that there are entire regions where there is very little access to this medication, with Clinical Commissioning Groups (CCGs) having not added any of these drugs to their list of drugs that people in their area can be prescribed.

We have also found that there are flash-points where a particular hospital Trust, despite their CCG adding one or several of these drugs to their list of drugs that they can prescribe, not prescribing them anyhow. There also appears to be a reluctance by individual neurologists to prescribe these drugs, even when they are allowed to by their CCG and Trust.

This needs to change and we are working to do that.

We have been contacting CCGs and hospital Trusts, talking to our colleagues in the migraine community, and crucially, migraine patients. This has helped us fully understand the situation throughout the UK, and has also allowed us to form a group to campaign for change.

We will campaign on this until everyone who is eligible for this medication has access to it, but we want to use this year’s Migraine Awareness Week to gain national attention for this issue. We will be running a media campaign and lobbying politicians, and working with people from across the migraine community to draw attention to this inequity.

We invite you to join our campaign!

How you can help

  1. Share your experience: Wherever you’re based in the UK, if you’re having difficulties accessing CGRP MABs, appropriate treatment or specialist services, we’d like to hear from you. You can contact us via info@migrainetrust.org with information about your situation and the difficulties you’re having.
  2. Sign up to our ebulletin: The best way to stay up to date with the campaign is by subscribing to our ebulletin at the bottom of the page.
  3. Tell your MP: You can also write to your MP, and Scotland, Wales and Northern Ireland residents can also contact their MSP (Scotland), AM (Wales) or MLA (Northern Ireland) in your regional parliament. We will have letter templates that you can download here closer to the week.
  4. Write to your local newspaper: We will be running a media campaign that will focus on national and local media which you can support by writing a letter to your local newspaper. We will have letter templates that you can download as Migraine Awareness Week approaches.