Migraine Awareness Week 2019

Six ideas for how The Migraine Trust will communicate about migraine in the future
By: Gus Baldwin, Chief Executive

I can’t quite believe I’ve been the Chief Executive of our amazing charity for six months already.

It’s been six months of incredible highs and terrible lows. My son, Jasper, was born in April and our longest-serving employee, Susan Haydon, passed away in July.

In the whirlwind of life so far as a CEO it has reminded me that when good things happen we need to stop to celebrate them properly. But we also need to grieve properly when awful things happen and be ready to understand and empathise more when awful things are happening to other people.

My half-year anniversary at The Migraine Trust also coincides with Migraine Awareness Week. Given that this vitally important week is about raising as much awareness about migraine as possible, I wanted to test six ideas with you about how our charity is thinking about how we communicate about migraine in the future. As always, I’d greatly welcome your views via feedback@migrainetrust.org

1. We need to understand what the public actually thinks about migraine before we can attempt to convince them of the need to empathise more

The public’s negative perception of migraine is often cited as a major challenge in building greater understanding and empathy about the disease and the impact it has on people’s lives.

I don’t doubt this assessment but I’m keen for our charity to understand in a lot more detail what the public across the UK actually thinks about migraine, what they know about the condition and its symptoms, where the main misunderstandings are and why, and what would help people who aren’t affected by migraine to understand the disease and empathise more with people who have it.

Alongside understanding in more detail where the public is now, we also need to understand what leaders in the NHS, in government and Parliament also think about migraine, while recognising that they are also members of the public and are influenced by what the public thinks as well.

2. We need to be able to explain what migraine is and the impact it has on people’s lives more simply, clearly and compellingly

I’ve been struck by the fact that the number one public message I’ve seen and heard during my first six months in the migraine world is that migraine ‘isn’t just a headache’. There’s even a hashtag #notjustaheadache (which I think I’ve probably used myself during my first six months). But should our number one message to the public be to tell them what the condition isn’t? Instead, should we try to better articulate what the condition actually is?

I’ve heard so many powerful stories from people affected by migraine already. This is a condition that has painful and debilitating physical symptoms. It can severely damage people’s mental health. It can destroy relationships, drive family and friends away, and ruin lives. It’s a disability that generates such a negative reaction from some employers that rather than wanting to help and support their employee to flourish, the response is to push them out. It’s a condition that can mean life literally goes on outside your darkened bedroom without you being involved.

We know that some of the big challenges in communicating about migraine are that the disease is complex and variable, and there’s a lot we just don’t know yet. But surely there are enough experiences in common for us to tell a clear, simple and powerful migraine story that our whole community recognises and can unite behind?

I would like The Migraine Trust to spend time talking to more people affected by migraine, migraine professionals, key stakeholders and – crucially – people without migraine so that we can start to nail down some more accessible, compelling messages about what migraine is and the impact it has on people’s lives.

I would also like us to significantly improve the evidence and stats we have available to explain the nature and scale of the migraine challenge, so that we can make a more effective case for why it is in all our interests to prioritise migraine now.

The aim should be to draw more people to our cause and ultimately to change hearts and minds.

3. People affected by migraine need to be front and centre in all our communications

Fundamental to our future communications will be the presumption that the voice and views of people affected by migraine are as important in the conversation as those of migraine professionals, researchers and decision-makers.

I said very early on in my time as Chief Executive that if we wait for those in power to decide it is in everyone’s best interests to reduce the discrimination and improve the care, treatment and life chances of people affected by migraine then we’ll be waiting a very long time.

That is not in any way to suggest that those in power don’t care. They do, and I’m very keen that we work together in partnership. It’s just that without the voices of people affected by migraine being heard more clearly and more often in that conversation, we are unlikely to get the ‘airtime’ needed for positive change to happen.

This means we will spend more time understanding what people affected by migraine think, want, feel and care about most, and then communicating this more regularly and compellingly to the outside world.

Crucially, it also means giving people affected by migraine the confidence, space and opportunities to speak up for themselves. If there is only one speaking slot available, I will always insist that a person affected by migraine gets that opportunity over me.

And it also means speaking in a language that reflects who people with migraine are now and how they feel about their condition. And while we’re on this subject, our charity is no longer going to call people with migraine “sufferers”. We think it is for the individual to define themselves in relation to their condition.

4. We need to communicate in a way that fosters an ever-growing migraine community with a clear sense of togetherness, determination, compassion and kindness

Migraine is a disease that isolates people. In contrast, communities provide support, friendship and connection. They also provide better answers to complex challenges. And they deliver bigger change more quickly.

It’s why one of three new strategic goals for our charity is to build an active and supportive community of people affected by migraine to act as both a source of support and a movement for change.

We want our future communications to talk proudly about our migraine community. We want to talk in awe of the incredible things our supporters do for us and the brilliant work of migraine researchers and health professionals, and the determination, resilience and general amazingness of people affected by migraine.

And we want our future communications to not only reflect our commitment to the migraine community, but to encourage more people to get involved. So we also want our communications to feel supportive, collaborative, inclusive and engaging. We definitely don’t have all the answers so we’re not going to pretend we do. We really do need everyone’s help and our answers to complex challenges will be better as a result.

5. The power of family in communicating the migraine challenge

Migraine is a disease that both unites and places enormous strain on families.

It’s a disease that stops mothers and fathers from seeing their child’s first school play.

It’s a disease where grandparents, sons and daughters, and grandchildren can all sit around the dinner table and know exactly what living with migraine really feels like.

It’s a disease where knowledge and best practice can be shared up and down the generations. Where the generation before knows exactly what the generation after it will likely face unless we do things differently.

Already I’ve met a number of parents who have dedicated most of their adult life to giving migraine a good kicking in order to try to prevent another parent going through what they went through with their own children.

And it’s a disease where, unless we intervene early and effectively, we know that the life-chances of the next generation will be dramatically impacted before they even reach adulthood.

I think families – of all shapes and size – need to be at the centre of how we talk about migraine and be at the centre of our migraine community.

6. The importance of hope

Finally, as someone who is new to the migraine world I’m incredibly excited by the opportunities we can already see coming over the horizon, and the potential of many others.

As well as the new treatments coming onto the market in the US, and hopefully then through the NHS over the next few years, I get the sense that we’re at a moment when the migraine community wants to come together and make the case for change together, in a way that perhaps it hasn’t been able to do before.

I’m also hugely inspired by the journey the mental health community has been on over the last 10-20 years. If they can do it, why can’t we? While there is no doubt it is going to be a long journey, the power of social media to mobilise, share ideas and change hearts and minds more quickly means that hopefully our journey won’t be as long as theirs has been.

First and foremost, we need to get more people diagnosed more quickly and then get them on the right medications. If we do that we can change a lot of people’s lives for the better.

I don’t in any way underestimate the scale of this challenge, and there are lots of other really important challenges as well. But there are a range of potential policy and service solutions already being used across the NHS that we could adapt for migraine that would increase the number of people being diagnosed. And these solutions would also save an awful lot of time, effort and resources across the NHS, especially in secondary care. That’s an exciting place to start!

And I’m excited about figuring out – in partnership with those working to support and treat migraine patients in the NHS right now – how we can engage and involve more of their colleagues across the health service in that challenge.

I’m also completely inspired by our wonderful charity. Small groups of committed citizens really can change the world and everyone at The Migraine Trust is utterly passionate about improving the lives of people with migraine. Part of our future communications will need to show more clearly to the outside world what our charity is doing and the positive impact we’re having, so that more and more people are willing to stand with us.

That’s six ideas for how we’re going to communicate about migraine in the future to celebrate my first six months at The Migraine Trust and Migraine Awareness Week. But what do you think? Please do take a moment to tell me about your personal experience and what you think is missing from this list.

We’ll be developing a communications strategy to support our new five-year strategy so your help is invaluable. Thank you very much in advance for getting involved.