Better Migraine Care

Better migraine care

It’s Migraine Awareness Week (5-11 September), and we have published a new report for it that exposes a broken healthcare system which migraine patients struggle to navigate. While the scale of the problem in migraine healthcare that it reveals is alarming, we hope it is the first step in changing and improving migraine care.

The report, Dismissed for too long, reveals a wide range of issues with migraine healthcare including:

  • Slow diagnosis: People with migraine are often only diagnosed several years after starting to have migraine attacks. Our research found that, of those who have been officially diagnosed, almost a quarter had been experiencing migraine attacks for over two years before they were diagnosed. It also found that over half (52%) of people who say they have migraine haven’t been officially diagnosed with it by a doctor.
  • Lack of access to specialist care: Most migraine patients never see a headache specialist, including those with chronic migraine who are referred to neurologists who may not have an expertise in migraine. We submitted Freedom of Information requests to all Hospital Trusts in England and Health Boards in Northern Ireland, Scotland and Wales to find out what access migraine patients have to specialist care. Only three Health Boards in Northern Ireland (out of five), three Local Health Boards in Wales (out of seven), seven Health Boards in Scotland (out of 14), and 13 Trusts in England (out of 128 contacted), replied and said they had a specialist headache clinic.
  • Lack of access to new drugs: The problems in migraine healthcare have intensified over the last year as many people who are eligible for the new (and first ever drugs developed to prevent migraine) calcitonin gene-related peptide (CGRP) antibody migraine medication have struggled to access it, despite it being approved for use on the NHS. Through Freedom of Information requests we found there was a postcode lottery with accessing these drugs where only one Health Board in Northern Ireland (out of five), two Local Health Boards in Wales (out of seven), seven Health Boards in Scotland (out of 14), and 15 Trusts in England (out of 128 contacted), replied and stated that eligible patients could access CGRP treatment.

Our recommendations on how problems can be addressed

We have set out a range of proposals in the report on how to address these issues that will aim to speed up diagnosis and ensure that those who need specialist care and new treatment can access it.

However, proposing solutions is one step, having those solutions implemented is a much bigger step. Some will be easy to put in place and we would hope that our recommendations will be implemented in the next year. Whereas other solutions will take several years to achieve.

We will need your support for both.

How you can help

We are raising the issue in the media and will be lobbying the government and working with healthcare bodies to have our recommendations implemented.

You can support the campaign by:

  1. Contacting your local representative: Writing 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. You can download a template letter to send to them here.
  2. Writing to your local media: We are running a media campaign that will focus on national and local media which you can support by writing a letter to your local newspaper. You can download a template letter to send to them here.
  3. Sharing your experience on social media: Share the report and your experiences of migraine healthcare on social media using the hashtags #BetterMigraineCare and #MigraineAwarenessWeek2021. We have graphics for Facebook, Instagram, LinkedIn, and Twitter, which you can use for your posts, that you can download here.

Thank you for your support. By working together to highlight the problems in migraine healthcare and campaigning for change, we can ensure that migraine, and people with it, are no longer dismissed in the healthcare system. Our work together will lead to better migraine care.