Strategic goal two – A diagnosis, legal protections, and access to the best possible information, care and treatment

What do you think about our second new strategic goal?

I need to start with another enormous thank you to everyone who has got involved so far in our informal consultation about our three new (draft) strategic goals.

We’ve been completely bowled over by the response and delighted that so many of you care so deeply about our charity’s future.

This week we’d like your detailed views about our second new strategic goal:

2. Ensure every single person with migraine – no matter who they are or where they come from – gets an accurate, timely diagnosis and access to the best possible information, care and treatment and has the same legal protections as other disabled people.

Given your feedback so far, we know people affected by migraine want us to do more to improve people’s experiences in the workplace. So it is worth stressing that the phrase “has the same legal protections as other disabled people” is there precisely for that purpose.

We are determined to tackle the discrimination people face in their daily lives. We know that discrimination is particularly prevalent in the workplace but we would also like to see improvements in how people affected by migraine are treated in other settings, most notably in education given the impact this experience can have on life chances.

We also suspect people face additional discrimination in other areas of their lives that we don’t yet fully understand.

Please let us know if you think we need to make this point more explicitly within our strategic goal.

In terms of what we do now, The Migraine Trust provides fantastic evidence-based content on our website about all aspects of migraine. Over two million people visit our website every year in search of help and support. We offer a number of toolkits there to support people affected by migraine in various situations, including in the workplace.

Last year over 2,300 people sought our help via our information and advocacy helplines.

And we also run Managing Your Migraine events around the UK – usually 2-3 meetings a year. The events are very well attended (around 100 people) and often we’re able to help people who we haven’t been able to reach before.

We also lobby for improvements in care and treatment, including so that people with migraine can access new drugs on the NHS if their doctor thinks the drug would help them.

In terms of our future five-year strategy we could:

  • Recruit a specialist headache nurse – to be part of our helpline service team. They would help with the trickier questions we get asked and give us more capacity and expertise to talk regularly about the latest care and treatment to a wider group of people, for example via our monthly e-bulletin, Migraine News and our website.
  • Grow our ‘Managing Your Migraine’ events – instead of 2-3 events we could run 8-10 events a year. We know there is considerable unmet demand and that people greatly value both the information and help they receive and the opportunity to meet with other people affected by migraine in their local area.
  • Continue to modernise and expand our information content – we know that people increasingly expect to see content on their phones in the form of infographics, animations, short films and blogs. If we made our website content more accessible and ‘shareable’ we could also reach and help more people. We could also improve key areas of content where we feel we’re not doing enough at the moment, including a broader children and young people section and patient-led content.
  • Produce a ‘state of the nation’ report – this would be an in-depth policy report to mark our 55th birthday next year. It would set out the current state of care and treatment for migraine across the UK and the main opportunities and challenges facing people affected by migraine. It would also identify a small number of key priorities for future national campaigning work.
  • Develop a new Workplace Outreach Programme – based around our successful ‘mindful of migraine’ initiative, we could work closely with chosen employers to help raise awareness and understanding of migraine in the workplace and offer 1-2-1 manager and employee support. We could do something similar for NHS trusts, hospitals and in primary care as well.

So that’s our thinking so far. What do you think? What would you prioritise under our second strategic goal as part of our next five-year strategy?

If you’d like to go to our Facebook page you can offer up your thoughts and ideas there. Or you can email me via feedback@migrainetrust.org

Gus Baldwin
Chief Executive
17 June 2019