Continuing a conversation with people affected by migraine about the future of The Migraine Trust

I’ve now been the CEO of this brilliant charity for nearly three months. In that time my partner, Lucy, has given birth to our new son, Jasper, and we are now a very tired, but very happy, family of four. It’s fair to say that 2019 has already been amazing and I’m really looking forward to seeing what the rest of the year and beyond has in store.

At the end of April I said I was keen to hear what people affected by migraine think our charity should do over the next five years.

I want to set out in more detail why I think the time is right for The Migraine Trust to look to our future and to share with you some thinking we’ve done about three new strategic goals. I’m really keen to hear what you think about them.

Start a conversation

Gus and Helen Balami, The Migraine Trust’s Advocacy Officer

I also want to start a conversation with you about what you think we should be doing under each of these new strategic goals. I should stress that this isn’t the only time we’ll be consulting with people affected by migraine about our charity’s future. It’s just the second time and there will be plenty of other opportunities over the rest of 2019 and beyond. While we’re offering this opportunity to tell us what you think primarily via Facebook, Twitter and email, we also hope to consult the migraine community in lots of different ways over the coming months. For example, we’ll be consulting with our Volunteer Forum at their next meeting and we hope to run focus groups and a survey of people affected by migraine later in the year.

There will also be plenty of opportunities to just write to me or give me a call with your thoughts and ideas. The Migraine Trust is first and foremost the charity for people affected by migraine and we want you to be at the heart of everything we do.

Why we’re looking at our strategy

So why do I feel that the time is right for a strategic refresh?

The obvious answer is that I’m new in the role. Wendy Thomas, my predecessor, did an amazing job leading The Migraine Trust. I bring a different set of experiences and a different approach to running our charity.

Alongside me, The Migraine Trust also has a new Chair, Michelle Walder, who also brings new ideas and a fresh perspective to her role.

In the past year Migraine Action also decided to close. The Migraine Trust is now the leading migraine charity in the UK. This comes with huge responsibilities and particularly the need to widen our organisational focus. If Migraine Action was seen as the ‘patient’ charity and we were the ‘research’ charity then now we need to make sure we play both roles as effectively as we possibly can, and represent the whole migraine community.

I also think this is one of the most exciting times ever in migraine research. The new CGRP drugs coming into the UK health system this year represent a genuine breakthrough in treatment for people living with migraine, especially for those with chronic migraine. We need to seize this moment and help keep up the research momentum.

But what excites me the most is what I talked about on Twitter at the end of my first month in the job. From all the conversations I’ve had so far, it seems clear that the migraine community is beginning to recognise that things will not improve if we wait for those in power to realise that it is in everyone’s interests to improve the life chances, care and treatment of people living with migraine.

Instead, we need to help and encourage our community to make an even more compelling case for change and empower more people to demand change for themselves.

I feel that all of this provides the potential – and I stress it is nothing more than a possibility at this stage – for the migraine community to come together and do the kind of thing for awareness, understanding and prioritisation of migraine that the mental health community has done to change perceptions of mental health over the past decade. Just imagine if we did.

Strategic goals

With this in mind, here’s where we’ve got to with our thinking about what we’re trying to do at The Migraine Trust. You can see our strategic goals and the initial consultation schedule for them on this page: Strategic goals

It won’t come as surprise to hear that we are a very small charity with very limited resources at the moment. Ultimately the first year of our five-year strategy will need to closely reflect the resources we have now. But we have big ambitions and big dreams and we’re keen for you to tell us exactly what you think, want and need from us with the hope that can plan for a very bright future.

If you’d like to go to our Facebook page you will see the three draft strategic goals there and a series of questions to help prompt discussion. Or you can email me with your thoughts via feedback@migrainetrust.org

Thank you so much in advance for getting involved and I’m really looking forward to hearing what you think.

Gus Baldwin
Chief Executive
30 May 2019