Strategic goal three - Build an active and supportive community of people affected by migraine

What do you think about our third new strategic goal?

We’ve already arrived at the final week of our informal consultation on our three new draft strategic goals.

Next week in our monthly e-bulletin we’ll set out what we think are the big headlines from all the amazing feedback you’ve given us over the past month.

For our final week we’d like your detailed views about our third and final new draft strategic goal:

3. Build an active and supportive community of people affected by migraine – this community would act as both a source of support and a movement for change.

Why do we think we need to build a community of people affected by migraine? Well people have been telling us that they want to feel:

  • Hope
  • Part of a community / not isolated / not alone
  • Empowered
  • Not a sufferer / not a victim
  • More confident / their self-confidence being rebuilt
  • Listened to
  • Influential – that their personal experience and journey matters and that sharing it will help improve things for others

I also talked at the beginning of this consultation about how the migraine community is beginning to realise that we can’t simply sit back and wait for change to happen, we need to come together and demand change for ourselves.

At the moment we do four main things at The Migraine Trust to help bring people together.

We host 2-3 ‘Managing Your Migraine’ events across the UK each year. They are an important way for people affected by migraine to meet others in their community while finding out more about their condition and the care and treatment available to them locally.

We run a Volunteer Forum with a membership of around 40 people affected by migraine. The group is the main way we involve people in the work of our charity at the moment. As well as doing activities online, we host two group meetings a year.

We launched our ‘Meet Ups’ programme in March. We’re encouraging people to organize informal ‘get-togethers’ with their friends and family, in part to reduce the isolation migraine can cause and encourage more people to talk about their condition.

Finally, we do as much as possible on Twitter and Facebook to help people to connect with others, share their experiences and find information, reassurance, kindness and inspiration from people with similar good days and bad days as them.

So what could we do as part of our next five-year strategy?

  • We could develop and grow our Volunteer Forum – it could support far more people from across the UK – 400 instead of 40? We could also link up our forum with local support groups across the UK so that our national agenda is better informed by local experience and ideas, and vice versa.
  • We could make it easier for people affected by migraine to help others – we could have a new ‘Get involved’ page on our website with a range of new and different ways people could give something back and support others.
  • We could grow the number of Managing Your Migraine events we run every year – so we can reach more people across the UK and help them to get to know others better in their local area.
  • We could invest in our digital communications – we hope to eventually build a community of hundreds of thousands of people affected by migraine across the UK. We know this community will need to live mainly online. We would like to be able to support a lot more activity and content on Facebook, Instagram, YouTube and Twitter to draw more people together and enable them to help and support each other more effectively. We also think our website is in need of a refresh. We are so delighted that over two million people come there for evidence-based information and support every year. Imagine how many more people would seek support if we gave it a lick of digital paint!

So those are our ideas so far. But what would you prioritise under our third 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. And if you’ve not already signed up to our e-bulletin, it is a fantastic place to find out about everything that’s going on at The Migraine Trust as well as the latest treatments and support to help you manage your condition. You can sign up at the bottom of this page.

Thank you very much for continuing to get involved!

Gus Baldwin
Chief Executive
24 June 2019