Our three new draft strategic goals
A summary of what we think you’ve told us
Over 300 people affected by migraine got involved in this round of consultation which is absolutely fantastic.
We wanted to play back to you the ‘big headlines’ we think you’ve told us.
The big headlines
- You really like our three new draft strategic goals – you think they clearly articulate what we are trying to do well and demonstrate that our charity is taking its new responsibilities as ‘The’ main migraine charity in the UK very seriously. You think the goals are sufficiently ambitious and aspirational to set the direction of travel for our organisation for some time while still feeling real and achievable enough for people to get behind them.
- You think The Migraine Trust is doing vitally important work – we’ve been so touched by all the kind words about how vital you think our charity is in helping to make people’s lives better. You think our role is going to be even more important over the next decade and beyond and you are keen for us to be at the heart of a new migraine movement across the UK.
- You think our research agenda is really important – you definitely want us to keep investing in helping to find a cure (or cures). But you also want us to focus more of our research efforts on what will help people living with migraine ‘here and now’ – i.e. preventing attacks, better treatments to manage the condition, symptoms and the postdrome phase, improving people’s mental wellbeing and (ideally) living well, and piloting new ways of delivering care and treatment across the NHS that might reach and help people more.
- You are keen for us to do more to explore the prevention agenda – there was a lot of feedback about the importance of raising more awareness of the main evidenced triggers (e.g. stress, lack of sleep, dehydration, lighting, eating irregularly, alcohol, caffeine, medication overuse etc) and how to help prevent a migraine attack (regular exercise, the right treatments at the right times etc).
- You want us to improve the support for people affected by migraine in the workplace – you are very keen that we seek to improve awareness, understanding and support. This was one of the biggest messages we heard in this consultation. We also know this from the number of people who call our Advocacy Helpline every day and from the tens of thousands of people who download our workplace toolkit and seek out workplace information on our website.
- You would like us to provide more support for GPs – you are very keen that GPs are helped more to diagnose, treat and support people with migraine more effectively. We know that around half of people living with migraine aren’t diagnosed at the moment. You also told us that you’re getting a mixed response when you go to your GP and ask for help. And you’re also struggling to access specialist care.
- You think children and young people get a particularly raw deal – while some do have access to high quality care and treatment and really good support around them, far too many do not. There was a strong message around the importance of investing our efforts in the next generation.
- You think we need to support people’s mental health more effectively – migraine significantly impacts on people’s mental health. And some people with migraine also have separate mental health issues as well. You are asking us to help support people better.
- You are clear that you want the best drug treatments available on the NHS – but only if and when you and your doctor decide you should have them.
- You are very positive about the importance of building a community – we are delighted with how supportive you are about this goal, about ensuring people affected by migraine are at the heart of everything we do, and with all the ideas you’ve offered about how we could do that. You agree that fostering a community online and using digital tools will have to be the main way but we can supplement this with more traditional, in-person meetings, conferences, events, get togethers, ‘meet ups’ etc.
- You want us to redouble our efforts to raise more awareness and improve the public’s understanding about migraine – you’re utterly fed up with battling against the perception that migraine is ‘just a headache’ and the stigma associated with this hidden disease. But you’re also hopeful for the future.
- But the biggest headline for us was the compassion, kindness, and the many supportive ‘online hugs’ we saw throughout our consultation – a number of people started this consultation as strangers and are now building new supportive relationships on Facebook and Twitter – that’s amazing!
While we think these are the main headlines, all of the feedback you’ve given us is vital and we’re incredibly grateful. I mentioned at the start of this consultation that our intention is to spend the Autumn and Winter developing a new five-year strategy which we hope to launch early next year. The feedback you’ve given us already will form the basis of that development work.
Over the next seven months we will create further opportunities for you to get involved and help shape our future strategy, particularly as we start to prioritise what we can (and can’t) do. We plan to:
- Host a number of small focus groups around the UK
- Use our ‘Managing Your Migraine’ event in Cardiff in October to find out what attendees think
- Undertake a major survey of people affected by migraine in the Autumn to make sure everyone who wants to get involved can do so
- Work closely with our Volunteer Forum to see what they think
- Regularly encourage people to email or phone me with your thoughts and ideas. Thank you to everyone who has so far. I hope I’ve now answered every single email personally but please do shout if you haven’t got a reply yet!
We will let you know about all these opportunities via our monthly e-bulletin. You can sign up at the bottom of our home page. It’s super simple and the best way to stay in touch.
The final thing to say is that I think we’re at a very exciting moment in the history of migraine and the history of our brilliant charity. I’m determined that The Migraine Trust is able to reach more people, help more people, and improve more people’s lives.
To do this we will need to put our charity on a firmer financial footing and then grow in a careful and sustainable way. One of the biggest challenges we face is that while over two million people come to our website every year, less than 900 people give us a regular donation. We are incredibly grateful to everyone who gives us a financial gift and we are keen to earn the trust, support and financial backing of more people so that we can do more.
If you like what you’re seeing about our ambitions then please do consider supporting us with a regular donation of £5 a month.
Thank you so much again for giving us your time and ideas and for being so positive about this process. We are completely delighted with how well it has gone and we hope you will continue to stay closely involved as we develop our next five-year strategy.
28 June 2019