migraine news april 2020 aw...i’m writing this introduction in my four-year-old daughter’s...

Why Dawn wants a cure for migraineP16

Coronavirus and migraineP6-7, 8-9 & 18

Issue 120 | April 2020

migraine

Our new five-year strategy and coronavirusP8-9

Running your own business with migraineP10-11

Our new State of the Migraine Nation projectP12

Researching a cure for migraine

P14

Migraine News April 2020 AW.indd 1Migraine News April 2020 AW.indd 1 20/04/2020 10:5220/04/2020 10:52

I’m writing this introduction in my four-year-old daughter’s bedroom while she plays in our lounge, my partner works in our hallway, and our one-year-old son sleeps in our bedroom.

Coronavirus has brought with it significant new challenges and responsibilities, and has got us all thinking about what really matters in our lives.

If I took a poll right now I imagine that most of the UK public would say they are most worried about them or their loved ones catching this horrendous virus, and what might happen if they did. But they probably also spend a good deal of their time worrying about being forced to stay at home; not being able to see and hug their family and friends when they want; that they might lose their job through no fault of their own; that the additional stress and pressure on their relationship with their partner might get too much; or that their children might not get the education, qualifications or life they deserve.

Sound familiar? Sadly, these are all concerns that for far too many people with migraine were already a part of living with this complex, painful, debilitating and exhausting brain disease.

For many people with migraine, coronavirus has also meant having to deal with the impact of the additional stress and upheaval in their routines at the same time as access to vital NHS specialist care and treatments – like Botox – has been suspended. It’s a terrible situation to be in and I’m full of admiration for the way people are trying their best to muddle through.

Given the overwhelming pressure on the NHS right now, we recognise our charity has an even more important role to play in supporting people affected by migraine through this crisis.

I talk in more detail about the impact of coronavirus on our community and our new five-year strategy on pages 8 and 9. Gemma Jolly, our new Information and Support Services Manager, offers some great help and support as well.

During these dark days we’re all looking for a light at the end of the tunnel. I am hopeful that this crisis will establish the option of flexible working and working from home as ‘the norm’ in most workplaces across the UK. This will be a very positive step forward for employees with migraine given how important both are in enabling them to stay in and flourish at work.

I hope that the country’s embrace of video-conferencing will also help to reduce the isolation that so many people with migraine feel and enable more of our community to participate in all aspects of life. It’s definitely something our charity will be exploring more.

And if you’re looking for hope and inspiration, my final suggestion is to look to where I always look when I need a lift. Just turn to pages 16-18 and read about the many migraine heroes who have done remarkable things to help improve other people’s lives. I have no doubt that when this is all over, more people from across our wonderful migraine community are going to emerge even more determined to get involved and help so that we all have the chance to live a better life after coronavirus.

Stay safe, we’re here to help you, and we will get through this together.

Welcome fromthe Chief Executive

2 Welcome from the Chief Executive

3 News

5 Get involved

6 Coronavirus and migraine

8 Our new five-year strategy

10 Your voice: Running your own business

12 Our new State of the Migraine Nation project

13 Raising funds for a permanent specialist nurse

14 Researching a cure for migraine

15 FAQs about migraine

16 Fundraising

Contents

The information and views given in this journal are not necessarily those of The Migraine Trust nor endorsed by The Trust. ISSN No. 0544-1153 © Migraine Trust 2020

TrusteesMichelle Walder (Chair)Dr Shazia Afridi MBBS MRCP PhDDr Fayyaz Ahmed MD MCRP MBADr Brendan Davies BSc MBBS FRCP MDDavid Cubitt Gary George Sir Denis O’ConnorSir Nicholas StadlenMike Wakefield

Chief ExecutiveGus Baldwin

The Migraine Trust is the largest charity dedicated to leading the fight against migraine in the UK. We exist to transform the lives of people who get migraine. We do this by funding and promoting research, providing support and information, and campaigning for people affected by migraine. Visit our website to subscribe to email updates and news, access migraine information and to learn more about The Migraine Trust including our support services, research and events.

4th Floor, Mitre House, 44-46 Fleet Street London EC4Y 1BNTel: 0203 9510 150 Email: [email protected] @migrainetrust themigrainetrust

A registered charity in England and Wales (no. 1081300) and Scotland (no. SC042911)A company limited by guarantee registered in England (3996448).

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We are very happy to report that the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) have both approved fremanezumab (Ajovy) to treat migraine. It will be available on the NHS to treat chronic migraine in England and Wales and episodic and chronic migraine in Scotland. We hope that the Department of Health in Northern Ireland will endorse the NICE guidance as soon as possible.

Ajovy, manufactured by Teva Pharmaceuticals, is one of a new generation of calcitonin gene-related peptide (CGRP) drugs specifically designed to prevent migraine, and is available for patients who have already failed to respond to at least three other migraine preventive drugs.

We submitted evidence about the effectiveness and impact of this new class of CGRP drugs as part of the appraisal processes. Our evidence included the findings of our survey of over 200 chronic migraine patients who have recently taken this new class of medicine. The survey found that using a CGRP inhibitor drug improved the lives of 80% of respondents.

Impact of coronavirus During the ongoing coronavirus (Covid-19) crisis, NICE has temporarily paused or delayed the appraisals of all CGRP drug treatments for the prevention of migraine. This means that although NICE has approved the use of Ajovy on the NHS, there will now be a delay in this guidance taking effect in England and Wales. NICE is currently unable to say at this stage when this, or other paused appraisals, will resume.

We understand the incredible pressure NICE is under and we have no doubt that it is making the right decision in the circumstances. We are also very concerned about the impact this decision will have on chronic migraine patients and hope that NICE will be able to resume the appraisal processes as quickly as possible.

Patients who are worried about what this decision may mean for them or who would like more information about managing their migraine during this unsettling time can contact our Information Helpline on Tuesdays and Thursdays from 10-4 on 0203 9510 150 or at any time using the contact form on our website.

NICE and SMC recommend the use of fremanezumab (Ajovy) for preventing migraine

It has been almost a year since the death of Susan Haydon, our dear colleague who ran our information and support services. We miss Susan every day and want to tell you about how we will be remembering her.

After a lot of deliberation, we’re going to do four things in memory of Susan and her incredible contribution to our wonderful charity and people affected by migraine. Susan was passionate about encouraging the most talented into the migraine world and improving understanding about migraine. So the first three ideas draw on these themes.

Firstly, we’re going to provide an annual ‘Susan Haydon Scholarship Award’ to which anyone in the UK undertaking a Masters in Headache Disorders, Neurology or an associated subject can apply. Secondly, we’re going to offer five free places to student researchers to attend our biennial Migraine Trust International Symposium (MTIS). The next MTIS is on 10-13 September 2020. Thirdly, we are going to name one of the MTIS keynote lectures in Susan’s memory with the theme of improving patient and public understanding about migraine. Finally, we are going to set up an annual ‘Susan Haydon Staff Award for Outstanding Contribution’. We wanted to create a way for Susan to continue to say “well done, great work!” to staff here and this felt like a really positive way for us to do that.

So that’s what we’re doing. We hope the ways we’ll be remembering Susan will make sure she is never forgotten and that even after her death she can continue to do what she was most proud of doing – improving the lives of people affected by migraine.

REMEMBERING SUSAN

NHS RightCare has developed a new toolkit for commissioners of NHS services in England. Commissioners are people who work in the NHS to plan, agree and monitor NHS services. The toolkit provides new guidance about where they should focus their efforts to improve care and treatment for migraine patients in their local area. Vittoria Polito, the Pathways Lead at NHS RightCare, has written about it for our blog at migrainetrust.org/blog

NHS RightCareMIGRAINE TOOLKIT

NEWS

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MEET GEMMA JOLLY, OUR NEW INFORMATION AND SUPPORT SERVICES MANAGERGemma has joined us from the Alzheimer’s Society and is leading on our support services and the development of new migraine information to help us reach even more people, involve more people, and improve more people’s lives.

MEET OISIN MCKENNA, OUR NEW COMMUNICATIONS OFFICEROisin has joined us from The World Transformed and is working on our digital communications with a focus on digital fundraising.

Speaking about her new role, Gemma said: “I’m the new Information and Support Services manager and it’s my job to manage and support a range of services that The Migraine Trust offers including our information & advocacy services, Managing Your Migraine events, the Volunteer Forum, the migraine content on the website and our outreach activities. I also support and manage the lovely information and support services team.”

Where did you work before joining The Migraine Trust?

“I worked at Alzheimer’s Society for 9 years before starting here. I was originally a dementia adviser – supporting people who had recently been diagnosed with dementia, then a Knowledge Officer – producing information on dementia and health and wellbeing; and finally as Knowledge Manager where I was responsible for a team of 10 who provided a range of information services including factsheets, web content, volunteer services and an in-house library.”

What do you like doing in your spare time?

“I am teaching myself calligraphy (and am currently developing my brush lettering). I also enjoy reading, being outside, travelling to new places and drinking gin!”

Speaking about his new role, Oisin said: “My role is Communications Officer. This involves working on a range of different tasks, from copywriting to website activity. A core part of my role is leading on various projects to make The Migraine Trust’s website a more effective digital fundraising tool. I also lead on the development of The Migraine Trust’s monthly ebulletin and our email fundraising campaigns.”

Where did you work before joining The Migraine Trust?

“I’ve worked in communications and information provision in a variety of organisations in the non-profit sector, including The World Transformed and FPA (Family Planning Association). Before moving to London from Ireland, I worked at Ireland’s youth information website SpunOut for three years. I also work as a writer across theatre and spoken word.”

What do you like doing in your spare time?

“I am an avid reader and spend as much time as I can with a good book. I also like to swim every day, be around friends, go to the theatre, and go out dancing”.

We are delighted to announce the appointment of two former Migraine Action trustees to our Board. Mike Wakefield, Migraine Action’s former chair, and Gary George, have joined the Board from October. They were welcomed to the board by our chair Michelle Walder. Another former Migraine Action trustee, Ann Harrison, joins in a new ‘Ambassador’ role. At the same time, our treasurer, Jenny Mills, has retired after 12 years on The Migraine Trust’s Board. She has also been appointed as a new ‘Ambassador’ for our charity. You can read more about the new Ambassador role on page 5.

MIGRAINE ACTION TRUSTEES JOIN OUR BOARD

WANT TO KNOW THE WANT TO KNOW THE LATEST LATEST MIGRAINE NEWS?Our ebulletinStay up to date with the latest migraine news by subscribing to our monthly ebulletin at the bottom of our website migrainetrust.org

Our new blogWe have launched a new blog which is a hub for people with a personal or professional interest in migraine to read about the latest thinking on migraine, its management, and the migraine community. Go to migrainetrust.org/blog

NEWS

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There are a range of ways to get involved with the charity, from learning more about migraine and its management at a Managing Your Migraine event, to using your experience of migraine to inform our work by joining our Volunteer Forum, or raising crucial awareness and funds during Migraine Awareness Week or by taking part in a challenge event.

They are not only for people with migraine but anyone who is affected, so please tell your friends and family about them and encourage them to get involved too. They know the reality of migraine and the impact that it has and are valued members of our migraine community.

6-12 September 2020:Migraine Awareness Week A week of activity aimed at raising awareness and increasing understanding of migraine. This year we are focusing on migraine in the workplace and are working with the Civil Service on building on our partnership that launched during last year’s Migraine Awareness Week. We will share how you can get involved in the next edition of Migraine News.

10-13 September 2020:18th Migraine Trust International Symposium (MTIS)Taking place in the Hilton London Metropole, MTIS is the world’s longest established headache conference. It brings together clinicians and scientists interested in headache to discuss the latest discoveries in migraine treatment and research.

The final day (13 September) is a public day for people affected by migraine. It is the largest national event in the UK for people affected by migraine, and the only place in the UK where world-renowned migraine researchers will be speaking in 2020. It is a chance to learn all the latest in migraine research, treatment, and care, and take part in a question and answer session with researchers and experts. It’s also a great way to meet other people who have migraine and join our

movement for change. You can also hear about The Migraine Trust, how we can support you, and ways for you to get involved in our work. You can find out more about it and book a place at migrainetrust.org/18th-biennial-migraine-trust-international-symposium

4 October 2020:Virgin Money London Marathon 2020The London Marathon is one of the biggest fundraising events in the UK. It has been postponed to the Autumn because of the coronavirus. Aileen Hitchins is running it in support of The Migraine Trust and you can read more about and how to support her on page 16.

Ongoing:Managing Your Migraine eventsThese are events for people livingwith migraine or with an interest in learning more about the condition. The programme includes presentations by migraine experts, with opportunities to ask questions and meet other people living with migraine in your local area. You will also be able to learn more about The Migraine Trust and talk to staff. You can find out about upcoming Managing Your Migraine events at migrainetrust.org/events

Ongoing:Volunteer ForumThe Volunteer Forum works with our staff and trustees, and is a crucial part of the charity. Members of the forum volunteer their time and skills, acting as a resource pool and critical friend to The Migraine Trust by keeping the charity informed of the views and needs of people affected by migraine. The Volunteer Forum is open to anyone with migraine or a carer of someone with migraine. Find out more about it and how you can join at migrainetrust.org/volunteer-forum

Just launched: Our new Ambassador programmeWe are very pleased to announce that we have launched a new ambassador programme. We’re a small charity and while we do our best to ensure that together we represent a good cross-section of the UK migraine community and have a full range of expertise needed to run our charity well, inevitably there are gaps. We hope our new ambassador programme will help us fill more of these gaps. You can find out more about the programme, our new ambassadors, and how you can become an ambassador at migrainetrust.org/launching-our-new-migraine-trust-ambassador-programme

UPCOMING ACTIVITY

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GET INVOLVED


CORONAVIRUS AND MIGRAINE

BY GEMMA JOLLY, INFORMATION AND SUPPORT SERVICES MANAGER

We are working hard to ensure our helplines remain open (Tuesdays and Thursdays, 10am-4pm) to provide one-to-one support for people who need it. Our telephone number is 0203 9510 150. You can also ask us questions at any time using the online contact form on our website.

I thought it might be helpful for me to share some ideas about how to manage if you are worried about coronavirus, you are asked to stay at home or avoid public places, or if you have to self-isolate.

MedicationYou may be worried about whether you have enough medication or whether a future appointment will be cancelled. Healthcare professionals, including GPs and pharmacists, are working really hard to make sure people have access to their medication, although it may need to be picked up in a different way. For more information about medication check your local GP or pharmacy website.

We know there has been conflicting information about coronavirus and certain medications, including Ibuprofen – the latest NHS advice can be found at nhs.uk/conditions/

coronavirus-covid-19/self-isolation-advice/. If you have specific concerns about certain medications you are taking and their interaction with coronavirus please contact your GP or specialist.

If you have an appointment with your GP or specialist coming up, they should let you know if it is being rescheduled. If you are unsure, the best thing to do is contact them, but please be mindful that they will be very busy. If your appointment is not for a few weeks it may be helpful to wait until nearer the time to contact them.

Managing stress and anxietyFor many people stress can be a trigger for migraine. The current situation with coronavirus may make things worse, especially if you are worried about yourself and loved ones.

Try to manage your stress as much as possible. If you already have techniques in place to help with stress carry on with these. Other things you may want to try include relaxation techniques, such as breathing exercises and yoga, getting some fresh-air, exercise (even if that’s in your living room), and creative activities such as colouring, drawing or

We know that coronavirus (Covid-19) is on everyone’s minds and there are lots of questions about what it means for people affected by migraine. We want to reassure you that we are here to support you during this difficult time.

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INFORMATION

Migraine News April 2020 AW2.indd 6Migraine News April 2020 AW2.indd 6 23/04/2020 15:2323/04/2020 15:23

up at the same time each morning to ‘anchor’ your day. And if you now find yourself working from home, if it’s possible try to maintain your sleep environment and avoid ‘working’ from your bedroom.

Eating wellMaintaining a healthy diet and eating regularly are important for people with migraine. In the current climate you may be worried about making sure you have enough food – try to plan ahead and buy in food so that you have enough if you need to self-isolate. If you have friends and family nearby, or a friendly neighbour, you could ask them to buy things for you as needed. Alternatively, look into food delivery options so that you can manage if you are unable to get outside.

Maintaining social contactPeople affected by migraine often report that they can feel isolated and lonely. Having to self-isolate and avoid non-essential contact may exacerbate these feelings. It’s important to find other ways to maintain your social networks such as telephone calls, social media or video calls (such as Skype or FaceTime). And tell your friends and family how you’re feeling.

Risk of coronavirusPeople with migraine may be concerned about whether there is any increased risk of developing coronavirus. Although there hasn’t been any research on coronavirus and migraine, the Government has set out guidance about which groups it thinks are more vulnerable to severe illness from coronavirus. It is important to also follow government advice and limit infection as much as possible.

We’re here to answer your questionsThe Migraine Trust helplines are here to try to answer your questions or queries about any aspect of coronavirus and migraine. Please do seek our help and we’ll do our best to share the answers to the most frequently-asked questions on our social media channels and ebulletin so as many people from the migraine community as possible can benefit.

I hope that’s helpful, please do email or call us with your questions, and stay safe.

painting. You could also try distraction techniques if things are getting too much, such as games, reading or watching a favourite film or TV programme or self-help techniques, such as mindfulness. While social media can help you to feel less isolated, it is important to recognise if and when social media use is impacting on your stress levels or making you anxious. Try to find ways to engage with social media in a positive and supportive way, for example, by intentionally looking for positive accounts to follow. The key thing is to focus on activities that help you feel better.

RoutineMany people with migraine find that a routine can help them manage their migraine. With government guidance changing in response to unfolding events, it can be hard to maintain a routine. However, it is important to try as much as possible. For example, if you are working from home, try to stick to your usual working hours and lunch breaks and put in place a simple routine to ‘leave’ work. This might involve putting away your laptop for the day or changing into different clothes.

SleepIt’s important to maintain a good amount of sleep – not too much and not too little. You may find it harder to sleep if you are worried or your routine has changed. However, try to practice sleep hygiene and manage any stress or anxiety. If you’ve had trouble sleeping the night before, still try to get

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INFORMATION

Migraine News April 2020 AW2.indd 7Migraine News April 2020 AW2.indd 7 23/04/2020 15:2323/04/2020 15:23

OUR NEW FIVE-YEAR STRATEGY AND THE IMPACT OF CORONAVIRUSBY GUS BALDWIN, CHIEF EXECUTIVE

We launched our new five-year strategy at the end of February. I said on launch day that it was one of the proudest moments of my life.

The world has changed dramatically since then and the environment in which we will be implementing our charity’s new ambitions already feels very different.

But our commitment to reaching more people affected by migraine, helping more people, and improving more people’s lives remains undimmed.

With this in mind, I thought it might be helpful to offer some initial reflections on the impact of coronavirus (Covid-19) on our community, and the possible impact on our charity’s new five-year strategy.

While it’s difficult to make an evidence-based assessment, it certainly feels like people with migraine are reporting a rise in migraine attacks as a consequence of the additional stress, sleep deprivation and changes to familiar routines.

We’ve seen people changing their medicines, and seen the pandemic halt access to new medicines, with the National Institute for Health and Care Excellence (NICE) having to suspend the appraisals of the latest calcitonin gene-related peptide (CGRP) drugs to focus their energies elsewhere.

And now the impact of cancelled NHS specialist appointments and the lack of access to vital treatments

like Botox is also being felt across our community. I’ve lost count of the number of people who have called our helpline in tears. Specialists, GPs and nurses we talk to on a regular basis are also deeply worried about their patients, while we all recognise that the safest course of action for everyone (patients and NHS staff) is to stay at home during this crisis.

We know that for many people we are your only source of support. We are determined to make sure we continue to listen to you throughout these dark days, and offer as much help as we possibly can through our helplines, our website, and through our ebulletin and socials. We can and must get through this together. It is clear that The Migraine Trust has never been more needed, but it is even clearer that we all need each other right now.

As we try to imagine life after coronavirus, we have a duty to ask what kind of life do we want for ourselves, our families and friends, and our migraine community? The fundamental injustices that come with having migraine in the UK won’t have gone away. The opportunities for a better life are still there to be grasped. That’s why our five-year strategy is still as vital.

Coronavirus will probably mean that

we’ll need to review how quickly and in what order we can deliver our five-year strategy. The situation is so dynamic that it is difficult to forecast how much income we will lose this year, but it is likely to be significant for a small charity like ours. We’ll be working as hard as possible to bounce back as quickly as we can. Most importantly, we’re still very confident we can deliver our five-year strategy if we can inspire the whole migraine community to join us.

How you can get involved in and support our strategy Our five-year strategy is deliberately ambitious. The changes we need to see in the lives of people affected by migraine requires it. But it also means we’re going to need a lot of help from the whole migraine community to deliver it. We’re definitely going to need to raise a lot more money, which is now even more true following the likely impact of coronavirus.

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STRATEGY


What we hope to achieve over the next five years

But there are plenty of other ways we’re going to need people and professionals to get involved. We set out in the strategy how you can help if you’ve only got one minute to spare,

one hour, or more time. If you’ve not yet had a chance to read it, please do at migrainetrust.org/strategy.

We’re here to help you, please stay

safe, and when it’s time to emerge from our homes and restart our lives, we hope you’ll join us on our incredible five-year journey ahead.

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STRATEGY

A SUMMARY OF OUR NEW STRATEGY What we want to deliver

Help find a cure – play a major role in encouraging new research and treatment to alleviate the symptoms and impairment caused by migraine and ultimately to find a cure.

Ensure every single person with migraine 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.

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

Achieving financial sustainability and sustainable growth.

Going from raising £750k per year to raising just over £1 million per year by 2025.

Putting people affected by migraine at the heart of our charity, including by growing our:• Volunteer Forum• Sounding board• Ambassador programme.

Producing a staff team that is the envy of the charity world.

How we will do it

Workplace Outreach

Programme

Nurse specialist New Information and Support Services and Communications

strategies

Investing in our team

Activity to improve diagnosis rates

Online community

‘State of the Migraine Nation’

Programme

New research strategy


The choice to run my own business was a hard one. When you have a debilitating disease, it is not the obvious choice. Yet when you start walking the entrepreneurial path you quickly realise that it actually can be a great fit.

As an employee, I was always nervous. I was struck down with guilt towards my employer and team members. The few who got migraine understood me. But I have worked in plenty of teams where people just heard ‘headache’ and didn’t understand.

Attacks for me could last three days. During those episodes, I would have to make myself throw up. Hide away in my dark bedroom during the day. ‘Sleeping’ sitting up on the sofa at night as lying down made it all worse. After my episodes I found myself working back sick days to show goodwill! It was my way to normalise things. Because I walked this world with guilt and shame for my uncooperative body, that was otherwise healthy and never ill.

Setting up Bloom Bakers took away the performance pressures I experienced and the constant sense of guilt, fear and anxiety of not being able to perform to standard. Yes, I have a business partner who depends on me to perform,

but she is patient. And both being mums to young children we were in no hurry to go anywhere super-fast with the business.

Lisa doesn’t get migraines herself, yet I feel she gets it. It helps I guess that she is close enough to me to see how everything grinds to a halt when I have an attack. For me, the biggest relief came from no longer being employee 223 out of 2000, but I was one of 2. I was trusted and seen by my business partner, who knew that I gave more than 100% on my good days, and 100% of my 5% on my bad days.

It should also be noted that in the first 11 years I never took any pain medication other than over the counter drugs. I wasn’t raised on taking painkillers. I was scared of them. It is only in the past year that I have been taking triptans, and my life has changed for the better because of them.

I also wanted to share my 5 top tips for starting your own business or going self employed.

BY SASKIA ROKSAM

RUNNING YOUR OWN BUSINESS

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YOUR VOICE


Meet-ups

Opt to work with a partnerHaving a business partner is great for a million and one reasons. But for someone who has migraines, it might not be possible without one. Whomever you partner up with, make sure that they don’t judge you, and aren’t disappointed with your level of input on days when your body will not let you.

Choose an industry that is suitableChoose to deliver a service or do something that can be planned in advance. This is especially pertinent if you do not have a business partner. Working ahead is vital for people with migraine. If you can work ahead, you mitigate disappointments from your clients.

Take your timeBuild your business in your own tempo. 6+3 = 9 but 2+7 = 9 as well. There is no perfect path to any outcome. Everyone walks their own route. So do not pay much attention to others. And if it takes a bit longer than anticipated then be kind to yourself and count yourself lucky that you got time to rest and listen to your body in the process.

Ask for helpDo not be afraid to ask for help when you need it. There is no shame in asking for help. And if you have people who are willing and offering to help you out then be kind to them and accept their help without feeling guilty.

Give 100% of what you have availableTake the meds if they make you feel better. But rest still. Your body is not 100% so do not push it. It is ok to have 20% operating days. No one is asking for you to give more than what you have available. Remember: It’s your business and you set the rules!

Our business has changed hugely since starting. It has adapted not only to health needs but also to other real-life challenges such as being mothers to young kids. The overriding success of becoming an entrepreneur for me is the fact that work now builds around my life and health. It bends for it. Not the other way round.

My name is Saskia. For the past 12 years, debilitating migraine have brought me to my knees on more occasions than I wish to admit. I get the throbbing pain, nausea, shivering with cold and complete brain fog, retreating to a dark room kind of migraines. At the risk of not wanting my migraine to totally define me, you should know I am also a mother of two, a wife and the co-founder of a sweet little biscuit bakery Bloom Bakers (bloombakers.co.uk).

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YOUR VOICE


According to NHS England, there are now around 10 million people aged 15-69 living with migraine across the UK. And between 3-10% of school-aged children in the UK are living with migraine too.

We want to change and improve the lives of our entire, diverse community. The only way for a charity of our size to do that is by working with people affected by migraine to campaign for changes in national policies and practices, alongside providing support services.

That’s why we launched our ‘State of the Migraine Nation’ project. This is a year-long programme of evidence-gathering and engagement to identify what matters most to people affected by migraine and draw our community together around shared priorities for future policy change.

After consulting with members of our Volunteer Forum, the programme is looking at the following issues:

•• Diagnosis, care and treatment•• The migraine workforce•• Children and young people•• Migraine research•• The migraine population•• The impact of migraine•• Public attitudes towards migraine•• Community voice and empowerment•• The key challenges and opportunities in each

of the four UK nations

Our final report will be launched at our 18th Migraine

Trust International Symposium (MTIS) in London on 13 September 2020 and will form the basis of our campaigning agenda for the next decade. But between now and then we’ll be doing a lot of fun and engaging activity to help inform the report’s final recommendations.

If you are already involved in helping us with the development of the report – thank you! We have been blown away by the hundreds of people with migraine and health professionals who’ve engaged with our project already and helped us better understand the key issues. After reading your comments we’re more determined than ever to get this right.

If you aren’t yet involved or are curious about what we’re doing, please consider joining our ‘informal sounding board’ of health professionals and people affected by migraine. Members of the sounding board help us out in the following ways:

• Giving us their views as we develop our policy thinking, e.g. by taking surveys or feeding back on draft documents

• Championing our work on social media. We regularly update the migraine community on this project and pose consultation questions using the hashtag #MigraineNation. Retweets are always very welcome!

• Blogging for us to share their experience.

• Coming along to our events and workshops. We’ve already held events in London, Cardiff and Manchester.

To join our sounding board, all you need to do is email [email protected] We look forward to hearing from you!

Get involved in the #MigraineNation discussion

BY LISA PLOTKIN, POLICY AND RESEARCH MANAGER

GET INVOLVED IN OUR ‘STATE OF THE MIGRAINE NATION’PROJECT

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POLICY


Why a specialist nurse would help us with thisIt is crucial that The Migraine Trust uses its resources as effectively as possible in meeting the needs of people affected by migraine. Therefore, we have trialled having a nurse specialist in the team over the last year and it has had a substantial impact in how we help people. By focusing on the most complex and clinical enquires she enabled the freeing up of resources to allow the team to respond to more enquires. She has also provided a range of new information through our website, ebulletin, and Migraine News.

This allowed us to help even more people affected by migraine, but the trial is almost over and we don’t currently have the funds to hire another nurse.

There is so much more we could do with a permanent nurse specialistOur 2019 migraine community survey helped us identify four key ways a nurse specialist can support people affected by migraine.

1. Further improve the information and support we are ableto provide people who contact our helpline and cometo our website, with the hope of giving more people theconfidence to seek better care and treatment from theNHS.

2. Help us develop a clearer ‘public identity’ for ourInformation and Support Services and enable us tocommunicate the latest treatments and best practicemore frequently and more effectively to a larger group ofpeople, e.g. through blogging and regular articles in ourmonthly ebulletin.

3. Help us foster and deepen relationships with an informalnetwork of migraine professionals across the NHS.

4. Lead on the development of a new headache andmigraine module for trainee nurses and GPs so we canplay a bigger part in supporting the development of thenext generation of the headache professional workforce.

Funding the roleWe are currently trying to raise the funds for a permanent nurse specialist from a range of sources including trusts and foundations. We are also seeking help from our migraine community, people affected by migraine who understand the importance of helping people with migraine by giving them clear and evidence-based information about their condition.

We would be really grateful if you could support our campaign to hire a permanent specialist nurse. If you would like to there is a form at the back of the magazine for you to fill out and send back to us, or you can donate via our website at www.migrainetrust.org/donate.

Thank you for any help that you can give.

CAN YOU HELP US RAISE THE FUNDS TO HIRE A PERMANENT NURSE SPECIALIST FOR OUR INFORMATION AND SUPPORT SERVICE?A significant number of the people contacting our Information and Support Service are not receiving the support they need. Many people want support to self-manage their migraine and many others need support in getting effective treatment. This is having a significant impact on their life.

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NURSE CAMPAIGN


Tell me about your research. How is it going so far?My research is investigating the role of a neuropeptide called amylin in migraine, with the ultimate aim of leading to a potential new treatment. We are interested in amylin for two reasons. Firstly, amylin is related to the recently developed calcitonin gene-related peptide (CGRP) therapies that have shown to be clinically effective. Secondly, amylin is involved in appetite regulation, which is a significant factor in migraine. It is great to be doing this project. I am still relatively new, so much of my time so far has been developing the technical skills needed for this project.

This has been going really well and I am excited to get my first results in the coming months. All being well I hope to present these at The Migraine Trust International Symposium (MTIS) in London in September in front of world leading experts.

I know it’s early in the process, but have there been any highlights so far?I think any day that my experiment goes well is a highlight if I’m honest. Scientific research can be incredibly frustrating at times, especially when experiments don’t go according to plan so whenever I have a good day in the lab it feels like a highlight!

How and why did you get into migraine research? Why is it important?When I was looking for a PhD I knew I wanted to do research that could potentially improve people’s lives and since I have friends and family that have migraine I have always been aware of how debilitating it can be. Therefore, when the chance for me to do a PhD in migraine research arose, I jumped at the opportunity. Less than 50% of migraine patients are satisfied with their current treatment so migraine research is hugely important in order to develop new migraine treatments and I hope my research will contribute to doing so.

Why is it so important that TMT is able to fund more researchers?The Migraine Trust is filling a very important role when it

comes to migraine research. Despite the fact that 1 in 7 people worldwide have migraine and it is incredibly disabling for many, migraine is one of the least researched and lowest funded neurological disorders. We’re making some good progress, but there are still so many unanswered ‘big’ questions about migraine. If The Migraine Trust was able to fund more researchers, then we could answer those questions faster and develop new treatments sooner. Hopefully this would have a positive, snow ball effect – with more excellent young scientists remaining in migraine research instead of (as is sadly too often the case) moving on to other, better funded research areas.

We are delighted to award neuroscientist Hannah Creeney our latest PhD studentship. Hannah who is from London will be studying the neurophysiological role of amylin in migraine, a project that is being led by Dr Jan Hoffmann and Dr Philip Holland at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

We interviewed Hannah in her laboratory to find out more about her research.

RESEARCHING A CURE FOR MIGRAINE

Hannah Creeney

Thank you – you make this research Thank you – you make this research possiblepossible

A huge thank you to everyone who has enabled this research by supporting The Migraine Trust. Hannah’s research is only possible because of the wonderful generosity of people who funded it in a range of ways such as running a marathon, holding a cake sale, leaving money in their will, and funders such as The Headley Trust. Together we will find new and improved treatments for migraine, and one day, a cure.

If you would like to get in contact with us to find out about the ways that you can support migraine research, you can call 0203 9510 150 or email [email protected]

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RESEARCH


FREQUENTLY ASKED QUESTIONS ABOUT MIGRAINE

What is a Greater Occipital Nerve (GON) block?A Greater Occipital Nerve (GON) block is an injection of local anaesthetic and steroid at the base of the skull. There are many uses for a GON block in headache management, including when headaches are disabling, other treatments are not working well or in pregnancy when some medications are best avoided. They may also be used when medication is being introduced and increased over some months but someone is experiencing severe migraine.

It can be difficult to know if a GON block will be effective, and how long it will last if it is. If the block is effective it can be repeated after 3-4 months. It is important to be assessed by a doctor or specialist to see if a GON block may be a suitable treatment option.

Why are some people prescribed preventive medication for migraine?Preventive treatments for migraine are used to try and prevent the chances of an attack. They can help to reduce the number and severity of migraine attacks. There are many different types of preventive available and choosing

one depends on a range of factors (such as other health conditions and possible side effects). Preventives are usually prescribed to people who experience disabling or prolonged attacks, frequent attacks (one or more a week), haven’t responded to acute treatments or have a reason not to take acute treatments (e.g. side effects or other conditions), or have a history of frequent or excessive use of acute medications.

If you feel a preventive may be suitable for you speak to your doctor. If you have frequent, severe attacks you should ask for a referral to a headache specialist. They are best placed to review your situation and advise on suitable treatments.

Will I still get migraine if I have Botox?The aim of Botox is to improve quality of life in migraine and reduce the frequency and severity of attacks. It doesn’t stop them. Botox is available to people with chronic migraine and should be continued if the benefit is sufficient (NICE suggests greater than 30% improvement). The effects of Botox can take a few weeks to work. It is not yet fully understood why Botox helps some people with migraine, but we do know that it doesn’t work for everyone. If Botox doesn’t help, you can discuss other treatment options (such as preventive medication) with your specialist.

Our information service receives a wide range of enquiries about migraine, and here are some of the most frequent that we receive

The Migraine Trust has two The Migraine Trust has two Support ServicesSupport Services – – an Information Service (for questions about migraine and its management) and an Advocacy Service (for support accessing healthcare, overcoming issues at work or in education) which can be reached via our website migrainetrust.org or by calling 0203 9510 150.

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INFORMATION


A huge thank you to Dawn Oldale who raised over £1,000 by undertaking a Spinathon, where she cycled for eight hours on an exercise bicycle. The Spinathon took place in Doddington Village Hall, in February, and Dawn had a whole team supporting her by spinning alongside her while others Zumba danced.

Dawn decided to take on the challenge because she personally knows the serious impact that migraine has on people’s lives. Dawn gets hemiplegic migraine which involves a temporary weakness on one side of her body as

part of her migraine attack, in addition to head pain. This involves her face, arm and leg, and is accompanied by numbness and pins and needles. It has seriously affected her life, and her daughter Molly, who is six years old, has begun to experience severe migraine too.

She said, “the reason I’m doing this is to raise awareness of migraine. This is a debilitating condition, raising awareness and giving support will hopefully help others. Molly, my daughter, had an attack just a few days ago. She also suffers with hemiplegic migraine attacks, which breaks my heart, and to think I’m able to help others means so much to me.”

Aileen is in training for the London Marathon, which has been postponed until the Autumn. She is fundraising for The Migraine Trust and has just passed the £2,300 mark! Thank you Aileen, we’re so grateful for what you’re doing. You can read about why Aileen is running to help people with migraine on her page, where you can donate if you’d like to support her, here uk.virginmoneygiving.com/AileenHitchins1

We are delighted to share and celebrate the commitment to helping people with migraine of our fantastic fundraisers. We thank them for their creativity and hard work.

Celebrating our fundraisers

Aileen Hitchins’ London Marathon run

DAWN OLDALE’S EIGHT HOUR SPINATHON

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FUNDRAISING


WE ARE THE BARTS CHOIR’S CHARITY OF THE YEAR FOR 2020We are thrilled to have been chosen as the Barts Choir’s Charity of the Year for 2020.

This is the first time that The Migraine Trust has been chosen as a Charity of the Year and we are working with Barts Choir on increasing awareness and understanding of migraine and raising crucial funds to help people affected by it and for migraine research.

The Barts Choir was founded in 1965, when it was formed by a group of nurses at St Bartholomew’s Hospital. It is now one of London’s largest choral societies with around 300 regular

members, offering amateur voices a wonderful opportunity to sing a variety of choral works under professional guidance. The choir performs in prestigious venues such as the Royal Festival Hall and Cadogan Hall.

While the choir isn’t currently performing due to the coronavirus (Covid-19) pandemic, we look forward to hearing them singing again and working on joint promotional and fundraising activity.

VALDA WALKER’S OPEN GARDEN DAYSThank you so much to our long-time supporter Valda Walker who raised over £1,000 by holding fundraising events in her beautiful garden in February. People could visit her garden by making a small donation and she sold tea, cake, plants, books and jewellery to raise funds.

Valda held her events because she has experienced migraine throughout her life and wants to help other people who are affected by them. Her monthly attacks, which lasted three days, were completely debilitating with excruciating pain and constant vomiting. With help from The Migraine Trust she was able to change her migraine treatment, which reduced the length of her migraine attacks to a few hours.

We are thrilled to announce that we have been chosen as one of the charities that will receive £1,000 as part of Ecclesiastical’s ‘12 days of giving’ campaign. We are receiving the money because of the high numbers of people who nominated us and a huge thanks to everyone who took the time to complete the nomination form! The funding is vitally important to The Migraine Trust and will be used to help people affected by migraine and fund migraine research.

Thank you for supporting our Ecclesiastical nomination

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FUNDRAISING


HOW TO BE A MIGRAINE HERO FROM HOMEWith the way things are with coronavirus in the UK, we are all looking at spending a lot of time indoors. For those of you that were excited to raise funds and have had plans postponed (like our incredible marathon runner Aileen), or those of you that would like to support the work of The Migraine Trust in this difficult time, there are a lot of ways you can help out!

Challenge yourselfIf you’re thinking of taking on a physical challenge to keep yourself healthy, or if you had intended to take on a challenge before, you still can! Let your friends and family know you’re fundraising for us, and set yourself a challenge! Whether you want to hold a zumbathon or dance challenge, there’s many things you can do inside.

If it’s a heftier challenge like a marathon or long cycle, you might find it easier to set yourself a portion of the challenge per day. Get yourself an app to track your route, miles and progress in meeting your challenge and make sure to keep everyone up to date with how you’re getting on so they know you’re up to the challenge!

If you’re not keen to put on a physical challenge, you might enjoy supporting us by taking on something different such as selling bric-a-brac or homemade arts and crafts on Etsy and supporting us with profits.

Or maybe you’ll be more comfortable hosting a virtual Migraine Meet-up with friends and family! Bake, chat, support each other and The Migraine Trust in the process with a video-chat and afternoon tea. You can also take on an indoor-challenge such as an online video-gameathon or a sponsored challenge.

Stay safe and healthyWhatever you do to support us, make sure you stay safe! When taking part in challenges and fundraising always follow government guidance, such as the recommended 2 metre self-distancing, and not staying outdoors for too long. Always put your health first!

Here to helpYou can also support our work by donating to us, or setting up a regular donation online at migrainetrust.org/regular-donations. You can also donate to us, and ask us to support your fundraising by contacting us at [email protected] and leave messages for us at 0203 9510 150. As always, thanks so much for all you do for us, we so appreciate it.

INSPIRED BY DAWN, VALDA AND AILEEN?We have various events and challenges you can take part in; whether you are looking to increase your long distance running stamina, want the adrenalin rush of a skydive or fancy having a go at wild swimming. You can achieve your ambitions, raise awareness of migraine and much needed funds for The Migraine Trust all at the same time!

DOES YOUR ORGANISATION HAVE A CHARITY OF THE YEAR?If the organisation that you work for has a Charity of the Year scheme, please consider nominating The Migraine Trust for it. We can help with your nomination.

Call our fundraising team on 0203 9510 150 or email [email protected] to find out more and how we can help you raise funds for the charity.

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FUNDRAISING


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Together we can beat migrainePlease support us and help improve the lives of people living with migraine.

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The Migraine Trust is a registered charity in England and Wales (1081300) and Scotland (SC042911)19


Staying in touch

We will securely record the information you have provided to process your donation and to keep you updated

with developments in migraine research and treatment. Please select from the options below how you would like to

hear from us.

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of how we may process your data can be found in our Privacy Policy, which you can access on our website at

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To find out more about The Migraine Trust, and to support our work, visit www.migrainetrust.org/support-us.

Please return this form to: Freepost RUAE-EGGG-KXKG, The Migraine Trust, Mitre House, 44-46 Fleet Street, London EC4Y 1BN.

Issue 120


migraine news april 2020 aw...i’m writing this introduction in my four-year-old daughter’s...

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