brainstrust logbook 8 by brainstrust

IS S U E 8 DEC EMB ER 2 016

Logbook THE MAGAZINE FROM

brainstrust â&#x20AC;&#x201C; the brain cancer people

New directories help you navigate your brain tumour journey: page 3 brainstrust superheroes walk 50 miles in 2 days: page 6 Making the clinical world understand your needs: page 8 Helping you achieve the best quality of life: page 14

Brain tumour support 24/7.

Call 01983 292 405 or email hello@brainstrust.org.uk

www.brainstrust.org.uk

Welcome to brainstrust’s 8th Logbook This is our way of saying thank you for everything you’re doing to help brainstrust as we support the thousands of people in the UK living with a brain tumour.

ast year, thanks to your support, we helped more people with a brain tumour than ever before. 475 people contacted us for help for the first time and 2372 people received support through our 24/7 phone and email help. Over 129,000 new people accessed online information and communities for guidance and help at a difficult and desperate time. Through our campaigning and influencing work we are driving real change in the way that people with a brain tumour are treated, and how research is run. To make this progress possible, your fundraising efforts meant we had a record year, raising almost £750,000. We wouldn’t have been able to do any of this without your help.

Thank you, to you, for everything you are doing, and for getting us this far. Together we can achieve our goal of helping each of the 60,000 people living with a brain tumour to be resilient and resourced, so that they can secure the best possible outcomes for their situation. Here’s to the next 6 months until our next Logbook. the brainstrust team

brainstrust’s leadership team

Chris Baker Will Jones

Helen Bulbeck Peter Bulbeck

Tessa Watson

Thank you, to you, for ❝ everything you are doing. ❞

Events and challenges brainstrust continues to receive overwhelming support from our community in all areas of our fundraising.

arch was a busy month. We took over 4 airfields nationally and invited our community to jump from the skies for our first Big Mother’s Day Skydive. Sixteen people took on the challenge and raised just under £10,000 in honour of mums who have been affected by brain cancer. Later in the month, the inaugural ‘Follow the Seagulls’ 2 day, 50 mile walk took place on the Isle of Wight. Nineteen walkers raised just 2

over £15,000. The second walk is planned for 1st – 2nd April 2017 and we’re also launching the ‘Follow the Seagulls’ Yorkshire Walk. Both events offer a real chance to do something big for brain tumours. Wear Grey for a Day and Teafest, our two main events, saw thousands of people wearing grey and having a cuppa to support people living with brain cancer. By taking part in the events, you told the world about what life is like for people living with a brain tumour, and raised more than £38,000 to help people on their brain tumour journey.

Increasing our corporate income has been a focus this year, which has included securing match funding for our team brainstrust participants from their workplaces. So far, we’ve raised £12,000 by companies matching the amount raised by their employees. To allow us to help more people with brain cancer, their families and caregivers, we need new supporters to take on a challenge. You could hold a tea party in February, jump out of a plane in March, or take on a sporting challenge and join team brainstrust. There’s a full list of events on our website www.brainstrust. org.uk/join-in-events.php To find out more please contact: tessa@brainstrust.org.uk LO G B O O K : I S S U E 8 – D E C EMB ER 2016

Never feel lost with support guides for your area We know how hard it is to find the right support when you’ve been diagnosed with a brain tumour.

ollowing a successful trial in Sheffield, we recently launched a new range of support directories that will help you find your way on this journey. These directories, entitled ‘The Little White Book’ are produced regionally and signpost you to all of the support available in areas such as Merseyside, Greater London, South East Scotland, Glasgow, Manchester and Tees Valley, with more on the way.

Never feel lost The guides will help you: l

Feel less lonely: we’ve included details of local support services, groups and networks

Improve wellbeing: there are details of local psychological support, complimentary therapies and even short breaks enclosed

Get back on top of things: you’ll find services that can help you with welfare and legal advice, and even transport

are we know on 01983 292 405

white book Merseyside

A directory of resources to help people affected by a brain tumour

There are over 55,500 people living with a brain tumour in brainstrust is the the UK. charity and the commun ity that’s here to people and those help these who look Edition 1: April after 2016 them, whoever they where they are on are and no matter their journey. We know we don’t have all the answers , but chances are someone who does. we know Get in touch brainstust Support-Merseyside-Cover.indd 1 today, for 24/7 help on 01983 or email hello@b rainstrust.org.uk 292 405

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The little white book – Greater London, edition 1, publishe d by brainstrust May 2016, due for review May 2017.

Registered charitable trust, brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642)

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Be prepared: respite and bereavement services are also included in the directories

Helen Bulbeck, our Director of Services and Policy at brainstrust says: “We know how lost you can There are over 55,50 0 people living with brainstrust is the tumour in the UK. charity andyou feel when ora brain your loved one is the commun ity that’s here to people and those help these who look after them , whoever they are where they are on and no matter thei r jour ney. diagnosed with a brain tumour. We know we don’ t have all the answ ers, but chances are someone who does wemany know in touch toda But we. Getalso know how y, for 24/7 help or ema il hello@brainstrus on 01983 292 405 t.org.uk www.brainstrust.o rg.uk invaluable support services there The little white book – Sheffield and the surrounding that edition 1, publishe area, are available locally can help d by brainstrust Nov ember 2014, due for review Dece mber 2015. you at every step of your brain tumour journey. We’ve worked tirelessly at brainstrust to find the best local services to help people, and we’ve put them all in these easy to access guides. The books will help you live a best quality of life possible, which we know can lead to a better outcome.”

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What’s more, the new range of directories have not only been helping people find their way, but also inspiring people in the world of health care. Benny Millier, Cancer Information and Support Service Manager at Macmillan got in touch with us to say:

There are over 55,500 people living with a brain tumour in the UK. brainstrust is the charity and the community that’s here to help these people and those who look after them, whoever they are and no matter where they are on their journey. We know we don’t have all the answers, but chances are we know someone who does. Get in touch today, for 24/7 help on 01983 292 405 or email hello@brainstrust.org.uk www.brainstrust.org.uk

❝

The little white book – Glasgow, edition 1, published by brainstrust May 2016, due for review May 2017.

The London Little White Book has inspired me to do more for local services for those affected by cancer. Thank you for that! © brainstrust 2016.

Registered charitable trust, brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642)

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Visit http://www.brainstrust. org.uk/advice-resources.php to read more about the guides and to request your copy.

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white book Glasgow and surrounding areas

A directory of resources to help people affected by a brain tumour

There are over 55,500 people living with a brain tumour in brainstrust is the the UK. charity and the commun ity that’s here to people and those help these who look Edition 1: May after2016 them, whoever they where they are on are and no matter their journey. We know we don’t have all the answers , but chances are someone who does. we know Get in touch today, brainstust Support-Glasgow-Cover.indd 1 for 24/7 help on 01983 or email hello@b rainstrust.org.uk 292 405

www.brainstrust.

org.uk

The little white book – South East Scotland , edition 1, publishe d by brainstrust April 2016, due for review April 2017.

Registered charitable trust, brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642)

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It is with thanks to the support of the Rank Foundation, the Vera Wolstencroft Trust, The Big Lottery Fund, and our Patient Resources intern James, who’s worked closely and tirelessly with our community on these guides, that such easy access to vital local support is now available.

Created for brain tumour patients and carers, the brain tumour hub is an authoritative, easy to navigate database of brain tumour support resources and UK based brain tumour clinical trials www.brainstrust. org.uk/brain-tumour-hub/ 3

How you have inspired us So many inspirational people have been doing big things for brain tumours over the past 12 months. 260 people walked, ran, cycled, hiked, swam, jumped and took on other amazing challenges to help our community.

n average, each member of team brainstrust raised £390 in personal sponsorship. This is an extraordinary amount, which can fund an entire meet up for the brain tumour community, or 8 brain boxes, the toolkit we send out to people who have just been diagnosed. This means that each person who has fundraised for brainstrust has gone on to change the lives of many people.

The children decorated biscuits and sold them at break time. They turned the hall into a disco so that all pupils, teachers and parents could put on their grey and pink and have a good ol’ dance. Together they raised an incredible £886.16.

What’s more, this year we have seen a fantastic increase in people getting their workplace involved, with match funding totalling £12,000. As you flick through this Logbook you’ll see what else team brainstrust has been up to, and can read about the many unforgettable memories that have been made. Below are a few fundraising stories to inspire you to join our team. You won’t regret it.

Dr Chris’ Ironman Story Christopher Millward, a junior clinician who works closely with brain tumour patients in Liverpool, took on one of the toughest challenges in the world for brain tumour support. Christopher faced a gruelling 3.8km sea swim, followed by a 180km cycle race, and then a 42km marathon. He spent the whole 14 hours and 46 minutes of the race thinking of those who we help. “When people say to me that the Ironman is impossible and ask why I wanted to put myself through it, I think of things that really are tough. Having a brain tumour is tough. The pain of completing this race could never match that. I thought about all those people that have been affected by brain tumours during the race,

not only my patients, but friends and family too. It gave me the strength to push on and reach the finish line.”

A day of dancing at Blakehill Primary School

Blakehill Primary School in Bradford held a fundraising zumbathon to raise money for brainstrust’s support service.

Rebecca Standeven’s dog walk Becca from Stoke-on-Trent’s life was turned upside down when her dad was diagnosed with a malignant brain tumour at the beginning of this year. Inspired by her dad’s positivity, she decided to do something memorable to help others. Becca organised a mammoth dog walk. “I’m so proud of my dad and how far we have come as a family. He’s the greatest man alive, and he’s doing so well. The dog walk was amazing. Over 100 people came in support of my dad, donations were made and dogs were everywhere.”

Children, staff and parents decided to support brainstrust after Niki Williams, a mum, and much-loved teaching assistant at the school, was diagnosed with a glioblastoma in September. They went all out to raise awareness and funds so that we can support families like Niki’s. 4

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Wear Grey

for a Day Making the world notice brain tumours

ach year, on October 1st, we wear grey for a day to raise awareness of brain tumours and funds for support. Why? Because people need to know about the devastating impact that any type of brain tumour has on people with the condition and their families. Thousands of people across the country showed their support for Wear Grey, wearing it at home, in schools, at work, walking their dogs, and even at the gym. Many of you were kitted out in our official Wear Grey merchandise including t-shirts, wristbands and ribbons, raising more than £20,000 to help people with a brain tumour. Throughout the day, people shared their photos, stories and reasons for wearing grey. Loved ones were remembered. Liz Kirtley, one of the Wear Grey for a Day supporters, explained why she got involved. “I wore grey on Facebook and in real life. I have

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a low grade brain tumour. Many people really don’t understand how it affects us physically, mentally and emotionally. The support of charities like brainstrust is so important.” Thanks to everyone who put on their greys. Together, we made the world notice.

Get involved in Wear Grey 2017 After the success of the 2016 event, we need to keep the momentum going. With your help, we can make Wear Grey Day 2017 the best yet. Make sure you’re part of it. Register today. Email kathryn@brainstrust.org.uk

brainstrust’s superheroes don’t fly. They walk. This year we launched Follow the Seagulls – a mammoth walk across the Isle of Wight which united the amazing people who have been raring to take on a challenge that matches their scale of passion for brain tumour support. Follow the

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he walk was hard. The terrain was tough. The weather was windy. But we did it. We walked 50 miles in 2 days, took over 1 million steps collectively and raised a whopping £20,000 for brain tumour support.

Paula is one of the superheroes who joined us for the walk. Her experience was unforgettable: “The ‘Follow The Seagulls’ 50 miles in two days walk for brainstrust was the biggest physical challenge I have ever undertaken, and ahead of it I was full of doubts: Would I finish it? Would I get lost? Would I be struggling, huffing and puffing and slowing everyone down? The nearer it got to the time of reckoning, the more daunting it all seemed.

50 MILES. 2 DAYS. ON FOOT. Do something especially ascending BIG for the steep hills brain tumours. we encountered, but every time I started feeling sorry for myself, I considered the people I was doing it for. What’s a stiff back and tired feet compared to living with a brain tumour? The answer is nothing. Those people were, and continue to be, my inspiration. “The routes we traversed were varied and scenic, and the views across the island were breathtaking. My fellow walkers were a fantastic bunch of people, and we all

encouraged each other along the way. I’d recommend this walk to anyone, and I’ll definitely be taking part again next year. Hope to see you there!” Yes, Follow the Seagulls will be returning in 2017. Plus we’re launching another version of the walk in the North of England. Be a brainstrust superhero, email michael@brainstrust.org.uk to register today.

“My worries were completely unfounded. It was an amazing experience. Yes my legs ached, 6

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Conquering Snowdon whatever the weather to support people with a brain tumour

Torrential rain and gales didn’t stop Annie Parr and her friends from conquering Snowdon to help people with brain cancer.

from start to finish. At one point the rain was coming down sideways. There were points we wanted to turn around, but we were so fixed on getting to the top and achieving our goals, that we kept our heads down and kept moving. I’m so proud of everyone.”

Annie and a group of friends took on the challenge of climbing the highest mountain in Wales to tell the world about brain tumours.

When they first decided to take on the climb, the group had a fundraising target of £200. They completely smashed that, raising more than £1,000 to help people living with a brain tumour diagnosis.

The 1,085m climb was made even more difficult by the stormy conditions. “It was torrential rain

Follow the

Seagulls 2017

50 miles. 2 days. On foot.

If you want to do something big, something truly memorable that will have a lasting impact for people with a brain tumour in the UK, then look no further. Follow the Seagulls 2017 is the event for you.

North Yorkshire Moors or the Isle of Wight

These self-supported walks, taking place on 1st and 2nd April, will pit you against physical and mental challenges like no other. But you will come out the other side with a heroic sense of achievement. You will have overcome a major challenge and done something big that will help 60,000 people be less alone, less afraid and more in control in the face of a devastating brain tumour diagnosis.

Ready for the challenge? Email michael@brainstrust.org.uk

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Annie wanted to do something positive to help people like her auntie, who has recently been diagnosed with a brain tumour. “She’s had a really happy two years, getting married and going on a holiday of a lifetime to Singapore. It was when she got back that she was diagnosed with a brain tumour. It just goes to show how quickly life can change. I wanted to do something positive to raise awareness.”

Teafest 2017 Make a brew for brainstrust We all know that brain tumour support is built on tea, not coffee, so join us for Teafest 2017 and celebrate the great British brew.

s well as hosting tea parties at home or work, why not use Teafest 2017 to get creative? Have a biscuit dunking competition, pretend you’re a fortune teller and read tea leaves, or taste teas from around the world. Anything (tea-related) goes. When people are diagnosed with a brain tumour, sometimes we pop a box of teabags into our brain boxes. One lady got in touch to tell us how much the tea, and the support meant to her.

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When I have a cup of tea I feel supported. It feels full of love and I feel very cared for by your organisation.

❞

Make the 2017 festival of tea bigger and better than ever Why not put the kettle on and have a think about how you could celebrate with us? Do something creative, or just relax with a cuppa and a slice of cake. Email michael@brainstrust.org.uk 7

Helping the clinical community to understand what you really need We represent your voice wherever it can make a difference.

ecently we’ve been ensuring that good, effective care and quality of life are at the top of everyone’s agenda, particularly the clinical community’s. Over the past 12 months we’ve attended and presented at many international neurological conferences. At the 2015 British Neuro-Oncology Society conference we were invited to give the final plenary, where we advised clinicians and health care professionals on the best ways to communicate a diagnosis. We were invited back this year, where we spoke about fatigue when living with a brain tumour, something which we know is a huge challenge for you.

Get to know… Holly Kings

Other conferences we’ve attended are SBNS and, more recently, the International Conference of Meningioma in Toronto, where we presented the experiences of our meningioma community to the international research community.

You can join us as we campaign Get involved l

Share your experience of care. Good or bad, we need to know. You can email hello@brainstrust.org.uk or pop a post it on our awareness board: www. braintumourawareness.org.uk

What are you looking forward to in your new role? Getting to meet a wide variety of people all with their own unique stories.

Holly Kings joined the brainstrust team in September, as a support specialist working in the Midlands. She’ll be arranging the brainstrust Meet Ups and working with people with brain tumours, their families and caregivers.

Describe yourself in three words. Active. Chatty. Kind.

Welcome to the team, Holly.

What’s the thing you hate the most? That time after Christmas when everyone puts the lights and decorations away. It feels so dark all of a sudden.

Why brainstrust? When I found brainstrust I was amazed by how practical the support and resources were. I was impressed by the straightforward yet personal and caring approach to what can be one of the darkest and scariest times in a person’s life.

What do you most enjoy? Getting outside on a sunny afternoon hiking and camping with friends. What’s on your desk? Lots of paper! Some tea, a big stressball and my trusty notepad.

What is the best book you have ever read? War Horse by Michael Morpurgo. It was my favourite book growing up, and I still have two copies now.

Ask your clinicians about quality of life. Do so when talking about your treatment and clinical trials. Ask how these things might impact on you and what you should expect. Tell them it is important to you.

Tell them about brainstrust. Tell them about how we can help you and your clinical team achieve a better quality of life.

Help us to provide resources that ensure everyone has a good quality of life. Your fundraising will help us build our vital resources. So hold a tea party, jump out of a plane or just make a donation. Everything helps us to help you.

Rest assured that we won’t stop until your voice is heard and people truly understand what you need.

What’s the best place you’ve travelled to and why? Finland. It’s such a beautiful country that is very different from home, but also has many similarities. It’s also full of exciting things to discover including the home of Santa Claus! What’s your greatest personal achievement? My Gold Duke of Edinburgh Award. It was the culmination of many years of hard work and new experiences, as well as a gruelling few days hiking. What are you most passionate about? Helping people. Tell us a random fact about yourself: I once went hiking

across a glacier. It was very exciting and very cold!

If you live in the Midlands and need support get in touch with Holly. Email holly@brainstrust.org.uk LO G B O O K : I S S U E 8 – D E C EMB ER 2016

My radiotherapy book: a new resource to help you understand the treatment A brain tumour diagnosis is confusing. We know. That’s why we’ve recently added a new directory to our resources that helps you understand treatment options.

y radiotherapy book explains the range of radiotherapy treatment that are currently available, so that you know what would be the best treatment for the type of brain tumour you are living with. Featuring explanations of different forms of radiotherapy, such as stereotactic radiosurgery and proton beam therapy, as well as the potential side effects and a glossary of terms you may encounter during treatment, this little book will put you back in control, whether you are a carer or a patient.

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More control can mean a better outcome. We know. Visit www.brainstrust.org.uk/ advice-resources.php to download the book today. Remember, if you ever want to talk things through regarding your treatment then just call 01983 292 405 or drop us an email at hello@brainstrust.org.uk

have no idea how much your support has overwhelmed me! ❝You I have only ever had negative feelings about any of my care,

xploring how National Cancer Registry data can be used for the benefit of the brain tumour community.

We know that there are so many questions you need answering when you’re diagnosed with a brain tumour. That’s why earlier this year we held a fascinating workshop in Leeds which explored how National Cancer Registry data can be used for the benefit of the brain tumour community.

Information to help you understand the treatment

Edition 1: January

brainstrust’s data workshop

By bringing together people living with a brain tumour, their carers, health care professionals and key players from charities and cancer registry services, we aimed to identify what specific questions we, as a community, want answered and how new ways of looking at registry data can give us these answers. We’re now working hard to take this forward. We hope that in the near future there will be a process in place where data can give people living with a brain tumour the answers about their condition that they need, so that they can regain control sooner.

but you managed to put a smile on my face and tears in my eyes, I can’t quite believe it.

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I received the brain box yesterday. ❝ I cried with happiness. It’s just what

we needed – the booklets, information, tea and even hand cream. You have restored our faith in human nature. Thank you.

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That special moment when you land, after jumping 10,000 feet for a loved one. It’s unforgettable. On Mother’s Day this year we took over three airfields across the UK for a massive skydiving challenge. Inspirational people came together in St Andrews, Brackley and Nottingham to do something amazing for their loved ones. brainstrust didn’t just stand and cheer though. Our lovely Head of Fundraising Tessa and Carol, our Support Specialist in Scotland jumped too, both in memory of their dads who they lost to a brain tumour.

“My super healthy dad was diagnosed with an inoperable, incurable brain tumour in 2012. For my family it was the most lonely, frightening time. By chance we discovered brainstrust who provided pragmatic support, brain boxes, meet ups and resources to our family, which helped us make the best of the short time we had left with Dad. I now work for brainstrust, but every year I still fundraise in his memory so that we can support families just like mine. The skydive was so incredible. I know my dad would be proud of me” Carol Cochrane, brainstrust Support Specialist

We’ll be jumping out of planes again in 2017. Make it the year you do something HUGE too. Just email tessa@brainstrust.org.uk to register your interest.

Spreading the flair for brain tumour support Our friends The Flair Bears, a rugby team with a difference, have this year gone above and beyond to help us support more people.

n April they put on Flair Bears vs. Celebrities, a huge charity match in London where they put their flair to the test against some well known names. The day was incredible.

They’ve also spread their flair as far and wide as possible, bringing clothing giant Jack Wills in on the cause, with their #Showusyourtackle campaign, and by partnering brainstrust with the epic London sporting event Summer Social. The boys’ commitment to brain tumour support stems from team

member Barty Hills, aka Danger Bear, who launched the team after his brain tumour operation in 2009. Since then, Barty has been determined to help more people like him get the support that’s so desperately needed during such scary times. Interested in Flair Bears Vs Celebrities 2017? Email tessa@brainstrust.org.uk

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Following in his father’s ‘no fear’ footsteps

nspired by his dad’s ‘No Fear’ approach to life, Paul Johnson decided to run the Bacchus Marathon whilst dressed as a dinosaur. As if that wasn’t challenging enough, he abandoned training plans, preferring instead to just get out there and run.

“Bacchus was a really fun day and event and I giggled a lot,’ says Paul. “In the end, I just got out there with no training and ran in the celebration of life and the spirit of ‘why not’. My dad would have approved.” After losing his dad to a brain tumour in 2014, Paul wanted to do something to celebrate the inspiration that was his dad. “A brain tumour doesn’t just rob you of the person when they go, it robs you of the person whilst they’re still alive,” says Paul. “It hurt. But at the end of last year I stopped hurting and started celebrating his life; celebrating the inspiration that was my dad.” It is not the first time that Paul’s run a marathon. Soon after losing his dad, he took on an overnight marathon, but at the time couldn’t emotionally deal with asking for sponsorship. This time, he knew he wanted to raise money and awareness to help people living with a brain tumour. He wanted to make it a marathon with a difference, so chose the Bacchus Marathon, which takes place in a vineyard with wine stops at every mile. And to make it even more fun, he dressed as a dinosaur! “I wanted to do something silly for a cancer charity. I chose brainstrust because the kind of support provided was just too close to my heart to say no.” During the 26.2-mile challenge, the memory of his dad spurred Paul on. ‘At my dad’s funeral, the lady who gave the eulogy summed him and his life up with one phrase, ‘no fear’. It summed up the way he approached life and the way he approached death. If only I can half live up to that example.

The Lark Rise Bike Ride

ach year our amazing supporter Chris Swallow puts on the Lark Rise Bike Ride to raise funds for our support service. The event, an off road cycle ride through the lovely countryside that formed the backdrop to Flora Thompson’s classic ‘Lark Rise to Candleford’, is always wonderful. But this year, the 11th ride, was just spectacular. 230 people turned up, cycled either 12.5, 25 or 40 miles and together raised an amazing £7000 to help the brain tumour community. There was food and festivities under giant tipis after the event and organiser Chris was happier than ever with how the day went: “It was lovely to see old faces again. There were people there who had done all 11 rides, alongside lots of newcomers. The combination of beautiful weather, the extraordinary generosity of Nigel and Gemma at the Muddy Duck who provided the food, the lovely gardens with the brilliant set up and the bonhomie of all the riders made the day so special. It was just like the very first Lark Rise Bike Ride.” The ride will be returning again in 2017 and you can be a part of it. Just email tessa@brainstrust.org.uk to register your interest.

“He still inspires me to never stop, to never understand the meaning of the word can’t, to just go out and do it and never give up.” LO GB O OK: ISSU E 8 – DE C E M B E R 2 0 1 6

The International Brain Tumour Alliance: advocating for the best treatments, information, support and quality of life for people living with a brain tumour brainstrust is part of the International Brain Tumour Alliance (IBTA), a global network and worldwide community for brain tumour patient organisations and others involved in the field of neuro-oncology. l

help shape health and research policies at national and international levels

celebrate the courage and achievements of brain tumour survivors and caregivers.

What makes the IBTA so valuable, and why brainstrust is proud to be involved, is its belief that patients, caregivers and families should be at the heart of everything. Like brainstrust, IBTA knows that real change and improvement in health and support service design and delivery comes through involving people directly affected by brain tumours.

Helen Bulbeck, our Director of Policy and Services, says: “Being part of an Alliance that is so invested in the needs of patients and caregivers is really important to us. None of us is as smart as all of us and by working together, as a global community, we can achieve so much.”

Across the globe in over 100 countries IBTA works with Alliance supporters, prospective supporters, researchers, medical professionals, pharmaceutical and device companies, government agencies, regulators, medical societies, key opinion leaders, the media and others involved in the neuro-oncology community to:

You can find out more about the International Brain Tumour Alliance by visiting www.theibta.org

he IBTA brings together experience and expertise from all over the world with the aim of enhancing the well-being and quality of life of brain tumour patients and their families.

encourage the establishment of brain tumour patient groups in countries where they don’t yet exist

promote collaboration on programmes and projects to benefit the brain tumour community

advance worldwide awareness of this disease by developing and promoting activities highlighting the challenges and needs of patients and caregivers

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Three cheers for Will, our Chief Executive and ‘Inspiring Communicator’ Our Chief Executive Will Jones was presented with an ‘Inspiring Communicator Award’ at a ceremony hosted by CharityComms.

ill works tirelessly to put the world right for people living with a brain tumour, so we’re thrilled that his commitment, drive and outstanding communication has been recognised.

Helen Bulbeck, our Director of Policy and Services, states: “Will has to walk in so many pairs of shoes at brainstrust – some of them tricky to wear. But he always steps up to the mark. Whether it is helping a patient who has just been given a terminal diagnosis of a brain tumour on the phone, encouraging a volunteer to shave their head, enticing a company to support a brainstrust event, writing a job advert, developing strategy or addressing the board of trustees, Will knows exactly how to pitch his communication.”

A particular achievement that CharityComms noted was Will’s role in developing the Patient Information Portal for the brain tumour community, which has now been adopted by Cancer Research UK to be rolled out across the cancer community, UK wide. And, Will received the award alongside other inspiring communicators from leading charities such as the Friends of Earth, RSPCA and Macmillan – a testament to the respect brainstrust upholds as a charity. Will works so hard to ensure that the voice of the brain tumour

What we think: The World Health Organisation’s new categorisation for brain tumours

fter many months of waiting, the WHO has recently published the new categorisation for brain tumours, which provides a more precise and accurate system of classifying brain tumours.

What does this mean for people living with a brain tumour?

And for research?

For the first time, the categorisation combines molecular information with histology (the type of tumour). This means that clinicians will be able to reach a more accurate diagnosis, a better prognosis and more focused treatment planning. It is a step closer towards personalised treatments

This is a significant step forward for neuro-oncology research. Research and the development of new treatments will mean that patients can be better matched based on the molecular signature of their brain tumour. And of course, once the data about brain tumours is gathered we

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as clinicians will be able to target therapies more accurately.

community is heard. So, this win is not only significant to him and brainstrust, but also to the people who everyday have to face the real challenges that follow a brain tumour diagnosis. Well done Will!

will be able to look at disease trends which may help us identify causes and risk factors.

The counter argument Although for the most part the new categorisation is good news, it does have some drawbacks and will have a significant impact on reporting. The data capture that is currently happening will become superseded by new datasets, meaning that presentation of long term trends and building a case for people with a brain tumour will become even more difficult. You can read more about these updates, and our responses to other brain tumour news, by visiting: www.brainstrust.org. uk/news.php 13

The five rings of health: how we help you achieve the best quality of life We recently put together everything that we think needs to be in place on the brain tumour care pathway, so that people living with a diagnosis have the opportunity to live the best quality of life possible. We decided to call the project ‘the five rings of health’, which you can see below. Each ring represents elements that can have a vital impact upon your outcome, from society to your own body and biology.

e’ve included examples of what we do at brainstrust, relating to each theme, with our support service, campaigning and research focus.

We know we don’t have all the answers to help you achieve the best possible health. But, we will work tirelessly to make sure that there is always the right balance in place. Visit www.brainstrust.org.uk/what-we-do.php to learn more about this work, and to begin accessing the help available in each ring.

What we do at brainstrust Five rings of health

We work tirelessly to make sure that everything in these five rings is in place on your brain tumour journey, so that you can achieve the best possible quality of life.

Societal conditions l Campaigns, tissue

donation, improving quality of life

Social networks

l Who’s in your team l Social media l Meet ups

l Phone/email support l Peer support l Volunteers

Stress and behaviour l Coaching/Acceptance

Commitment Theory

l Information – website,

paper resources

l Impact of therapies

Body l Tumour type

l Patient and carer

journey l Clinicians l Treatments l Diet

l Anxiety (counselling,

hypnotherapy)

l Depression (counselling,

hypnotherapy)

l Fatigue

l Loss of identity

l Isolation (meet ups,

social media)

Biology

l In vivo research Registered charitable trust, brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642) © brainstrust 2015

Adapted from Schatz, BR, et al. Healthcare Infrastructure: Health Systems for Individuals and Populations. Springer, 2013

l Molecular analysis l Epidemiology

December 2015

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brainstrust Incubator Days

You may remember reading about the JLA Top Ten Priorities for clinical research in brain and spinal cord tumors in Logbook issue 7.

ell, our incubator days are the next step. It is vital that this work does not become water in the sand. Too often the JLA priority setting partnerships identify the top ten uncertainties and then what? Just an empty vacuum with no forward action. Our incubator days are critical in taking the agenda forward and so far we have held four. What is an incubator day? It’s a think tank, where ideas are incubated and grown. It takes the form of an interactive workshop, structured to drive lateral thinking and radical approaches to address research challenges, with the aim of producing research proposals. At the end of the process grants are agreed. These are things an incubator event achieves. Working collectively we: l find out about current research evidence (Cochrane or other systematic review) l explore potential research around the theme of the incubator event l bring a team together to build the submission l seek involvement from research development experts l develop the proposal with the help of a Clinical Trials Unit (CTU) l consider the trial management, protocol, statistics, data management l provide robust peer review of research proposal through the National Cancer Research Institute (NCRI) LO GB O OK: ISSU E 8 – DE C E M B E R 2 0 1 6

seek the most appropriate funding route for the study with partners l apply for funding to appropriate funder Our Incubator Days have focused on the following questions: What is the effect of interventions to help caregivers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care? JLA uncertainty 8 This is an important area of research because we know the detrimental impact to the health and wellbeing of informal caregiver for a patient who is living with a brain tumour. Providing caregivers with support and guidance

empowers them and lowers levels of distress, which in turn influences patients’ health for the better. This research will explore what the best interventions are for this vulnerable group of people. Is there any evidence that the addition of an exercise programme reduces fatigue in patients with primary brain tumours, compared with standard care? JLA uncertainty 9 Fatigue is one of the most frequent and distressing problems described by people living with a brain tumour. It remains troublesome throughout the course of survivorship and is therefore an extremely common and persistent side effect of brain cancer and its treatment. It is important to discover how to manage it effectively. We also ran two other incubator events around epilepsy in patients who are living with a brain tumour. We need to provide up to date evidence based guidance to neurosurgeons about the use of epilepsy medication, so this was the focus of these events. Two other Incubator Events are in the pipeline this year – for diet and for early intervention for palliative care. And more to follow in 2017. None of these would have happened without the support of our fabulous fundraising community so your efforts really are taking the clinical research agenda forward. Special thank you to Julia Baker and her husband for their support with the fatigue event. 15

Building effective brain tumour communities across the UK We know how lonely a brain tumour makes you feel. That’s why we started holding meet ups a few years ago so that people on the same journey could come together, support each other and feel part of a wonderful community.

ur Meet Ups are always informal and fun. We didn’t want to go down the support group route – we offer help personally, at any time. So instead we chose to arrange afternoon teas and evening meals, anything that will bring anyone affected by a brain tumour together with others who truly understand, in a ‘normal’ environment.

These get togethers have grown over the years and in 2015 we celebrated our 100th. Since then, we’ve gone on to hold even more and in new regions. We’ve built new brain tumour communities and even held coaching workshops that provide people with strategies

to cope, so that they can become stronger on their journey. Come along to a brainstrust Meet Up. Maybe you’ll leave feeling stronger too. Visit www.meetup.com/ brainstrust/ to see a list of our upcoming Meet Ups.

Here’s what our friends say about our meet ups

❝I have never been to such an uplifting event. Just meeting other people, having the space to talk about anything and everything has been life changing for me. ❞ ❝

It was so great to meet up yesterday. We all had a lovely time meeting you and the other patients/carers. My mother said an amazing thing in that yesterday really helped her feel stronger about dealing with her condition after meeting you all. So thank you again because what you do is give people the kind of support that can have magical effects.

❞

Why not volunteer with brainstrust?

ur volunteers are so important. They help us to raise awareness of brain tumours and the work we do, so we can help more people living with a brain tumour. We know that 99% of volunteers are from our community – the special people who have been touched by this terrible disease – and we know there are lots of reasons why you might want to help us. If you want to do something positive; help others; meet other amazing people; talk about brainstrust and how we can help, we would love to hear from you. There are so many ways you might be able to help us – and we know that sometimes it helps you too. Please get in touch with Tessa, tessa@brainstrust.org.uk or 07948 400329. I started volunteering ❝ with brainstrust after

I went to a Meet Up and was struck by how nice it was. Everyone there was in the same boat and it helped not only me, but my parents as well, as they got to meet other family members and friends in their position, with loved ones who are ill. So I wanted to give something back. I volunteer with fundraising projects and with organising the Meet Ups, both of which are hugely important and my little bit of time is gladly given.

❞

Rachel Stretch, brainstrust volunteer 16

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The support that you need, at the click of a finger www.braintumourhub.org.uk When you’re diagnosed with a brain tumour it’s hard to find all of the support that’s out there. But we believe it should be as easy as possible. That’s why we created www.braintumourhub.org.uk

eveloped with Clinical Nurse Specialists and people living with a brain tumour, the hub is an authoritative, easy to navigate database of the brain tumour support resources available to you nationally.

Much like our Little White Books (page 3), it signposts you to a wide range of services that can help you become stronger at every step of your brain tumour journey. And, the hub also provides information and contact details for UK based clinical trials.

Just visit www.braintumourhub. org.uk, type in your postcode and get the support that you need, today.

Sometimes you need a little bit of extra support…

e know how hard living with A brain tumour is. A diagnosis strikes at your very identity – and often you have to let go of the person you were and discover a new you. We can help you come to terms with this and put you back in the driving seat.

The brainstrust team comprises of expert trained coaches. When you contact us, we’ll listen, listen some more and then ask questions. We focus on helping you achieve specific immediate goals, which relate to specific areas. For example, weighing up the pros and cons of having a particular treatment, or overcoming a problem with caring. We also know that through coaching, you can experience a LO GB O OK: ISSU E 8 – DE C E M B E R 2 0 1 6

Here at brainstrust, people are at the heart of everything we do. We’re here to help and support people living with a brain tumour diagnosis, their friends, family and caregivers. We have many incredible stories to tell and to share, which when told encourage more people with a brain tumour to contact us for help and support. The more stories we share, the more people we can help and the more impact we can have. Whether you are a patient, caregiver or fundraising supporter, we want to hear your story, email liz@brainstrust.org.uk

We’re always updating the hub with the best services we find to help you, and accessing it couldn’t be easier.

brainstrust coaching

your stories Sharing

sense of healing, as you make courageous decisions about your own life.

Counselling Sometimes there is too much distress, and a psychological intervention is needed. In these instances, counselling can be useful. It is suitable for someone who is struggling to cope or feeling very anxious and therefore finding it hard to focus on specific immediate

goals. brainstrust has a network of counsellors who can help you make sense of your situation, so that you can make better decisions about the future.

Hypnotherapy There is plenty of evidence that hypnotherapy helps people with cancer and those who care for them. It can be used as a complementary therapy alongside conventional medical treatments for a number of different purposes. It can help to: manage anxiety, reduce stress, build confidence and optimism, prepare for surgery and promote post-operative healing, reduce the side effects of treatments, optimise a healthy lifestyle and build resilience.

Never struggle alone For more information about these services, or to access any today, just email hello@brainstrust.org.uk or call 01983 292 405 17

New horizons for

little brainstrust

After the successful launch of little brainstrust last year, the new service has won the support of Children with Cancer, the leading national cancer charity dedicated to the fight against all childhood cancers.

his collaboration will see brainstrust providing dedicated support for children and families facing a brain tumour diagnosis, and will let us help more families sooner.

Why is this important? We know that for around 500 families every year, the world is flipped upside down when they receive a brain tumour diagnosis. With overwhelming information and an uncertain journey ahead, we want families to feel less alone, better supported and able to negotiate whatever comes next head on. Helen Bulbeck, Director of Services and Policy, explains why the collaboration with Children with Cancer is such great news for brainstrust and the families we work with: “Emotionally, we are already committed, heart and mind, to creating the best support service possible for children and parents battling a brain tumour diagnosis. 18

There is a social injustice at play here; it is simply wrong that there is no dedicated resource with national reach that exists for children. Carers should not feel as lost as we did. Nor should they have to spend valuable time seeking support from a decentralised, adhoc, patchy offer that lacks rigour.”

What support will little brainstrust offer? The little brainstrust team will be working hard to make sure that families receive tailored and useful information, to help make things less confusing and give families hope during what can be a difficult and lonely time. Our new ‘little brain box’ will have resources, toys, and tea to help families get back in control as they negotiate diagnosis, treatment and changes to family life. We will also be continuing our programme of family meet ups for fun, social support and a little escape, like our great day at London zoo last year.

One parent explained what the day meant for them: “Lucy* had a fabulous time, she even got to feed the giraffes, which was amazing as they are her favourite animal. To spend quality time together is an enormous benefit for us and to escape the reality of diagnosis even for just a few hours is priceless. For me the opportunity to talk with others in a similar situation is great. We can learn so much from each other’s experience.” As always, our dedicated coaching led support is available for families, by phone (24/7) or email. To find out more or get in touch, visit www.littlebrainstrust.org.uk *Name has been changed

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Meet our new team in the North

Thanks to your support we are now able to do more for people across the North of England. Aisha, Michael and Claire joined us this summer, and are based in Leeds.

Meet Aisha

Meet Michael

Meet Claire

our new Support Specialist and Volunteer Manager

our new Community Fundraiser and Volunteer Manager

Our new Support Specialist for children and families

“I’m here if you ever need to talk, and I’ll be inspiring people to become stronger and take control on their journey. I can’t wait to meet the Northern community, and find out what is really needed to improve your quality of life, and outcome. I have 15 years’ experience of working with statuary and voluntary organisations and directly with communities, so I truly believe in the value of bringing people together. On a personal note, I’ve been a carer since I was 8 years old, and have looked after loved ones through long-term conditions. I’ve witnessed first hand the devastating challenges a terminal diagnosis presents and have a deep empathy for a carer’s role and journey.”

“I’m here to inspire people in the North to do something big for brain tumours, and to provide support for whatever fundraising idea people may have – the whackier the better! I’m already planning some exciting new events, and starting to build relationships with community and corporate groups in the North. I join brainstrust after working for an epilepsy charity for seven years, so I already have an understanding of some of the challenges that the brain tumour community faces. I’m starting to now build a greater understanding, and am hoping to inspire others to get involved and do something great to help people living with a brain tumour.”

“I am working to develop ‘little brainstrust’ – our support offer for children, and to extend our work with families in the hope that we can give personalised support at such a scary time. I moved to Manchester 6 years ago to get my degree in Neuroscience and Psychology. I then worked in healthcare marketing, developing disease awareness campaigns. After working in commercial marketing for a while, I decided it was time to use my skills for good rather than evil, and here I am. I can’t wait to meet and really help families in the North. I hope one day we will be able to support every child diagnosed with brain cancer in the UK, and their families.”

A random fact about Aisha:

A random fact about Michael:

A random fact about Claire:

“I can speak 4 languages! Urdu, Punjabi, Hindi and (of course) English.”

“I used to play bass guitar in a band. We supported The View and played at the Cavern Club in Liverpool, which was really cool!”

“I’ve recently taken up swing dancing. I’ve got the steps nailed, just need to work on my vintage dress code now!”

You can contact Aisha for support at any time. Just email aisha@brainstrust.org.uk

Michael is ready to make some unforgettable fundraising experiences with you. Just email him on michael@brainstrust.org.uk to get started.

If you’re caring for a child with a brain tumour then get in touch with Claire. Just email claire@brainstrust.org.uk

It’s not just our Northern support offer that is growing. Our team works throughout the UK. If you’re in the Midlands contact holly@brainstrust.org.uk. For Scotland contact carol@brainstrust.org.uk, or if you’re in London contact jill@brainstrust.org.uk. LO GB O OK: ISSU E 8 – DE C E M B E R 2 0 1 6

Lisa Bennett’s brain tumour story

n September of 2015, following a routine MRI scan, Lisa Bennett was diagnosed with a lesion on her brain. She underwent a craniotomy to remove the lesion at King’s College Hospital in February of this year. Unfortunately due to the size of the lesion, which was much smaller than originally anticipated, it could not successfully be removed. Biopsy results showed that her tumour is not malignant and that it currently continues to remain very small. She is now on a ‘watch and wait’ programme with interval MRI scans.

“Upon diagnosis I found there was very little in the way of co-ordinated support and information available at what was an incredibly uncertain time for me and my family. No one can imagine what goes through your mind at that point or the range of emotions experienced. It was incredibly scary.”

me take control of my situation and continue with positivity. They made me realise I was not alone. They were quite simply amazing.” In the immediate months after surgery, Lisa had a good recovery. She even managed to take on a fundraising walk along the Thames and raise an astonishing £1,200 for our support service.

It was whilst researching her diagnosis that Lisa found brainstrust.

Just as Lisa was getting her life back to normal, she experienced a devastating set back.

“brainstrust became my lifeline. Whenever I needed to talk things through, both practically and emotionally, they were there for me, providing reassurance that I desperately needed. They helped

“I’d recently returned to work, which felt amazing and was expecting to get my driving licence back when I had my first post-op seizure. It was terrifying. We don’t know what causes the seizure – my latest MRI

scan had showed stable results and no change. I’m not taking antiepileptic drugs, but I’m struggling with the side effects. We had to cancel our family holiday, which was devastating.” Lisa has not only been supported by brainstrust through this hard time. She’s is also a part of our Facebook brain tumour support group, where she’s able to chat to others who know exactly what she’s going through. “It is a wonderful Community. I’ve found the group not only a source of comfort in darker moments, but being able to share knowledge from others in similar positions has been great. People have helped me immensely with practical things, such as travel insurance and I’ve been able to contribute my knowledge of disability benefits, as that’s my working background. When I had my first seizure, people were there, straight away, to reassure me.” Although Lisa is worried that she’ll experience another seizure, she knows that she’ll never have to face anything alone. “I live with the hope that my lesion will not grow and that I’ll experience no more side effects but in the moments that I have doubts brainstrust continue to support me and lift me up. I know that I can contact someone at any point and instantly gain more knowledge and control. That’s invaluable to me.“

Helping people with a brain tumour to live a better life We are proud of our achievements at brainstrust and how our reach and impact has grown. In 2015/2016 we helped more people than ever before through our phone and email support, online information and communities, Meet Ups, and providing brain boxes. We’ve also developed our policy and influencing work. Last year, we established our position on campaigning, setting out to put the world right, the right way, for people with a brain tumour.

How we spend your funds: £0.69m Governance costs: £20,617 Cost of generating income: £67,232

Helping people with a brain tumour and charitable activities: £608,872

Work at brainstrust continues apace, but we couldn’t do it without your support. And thanks to you, we can say we’ve had another fantastic year. 20

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Registered charitable trust, brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642).