2021-03-31-accounts

When I am a patient, I am dependent.

When I am a person, I am resourceful.

And that’s why we are able to help people living with a brain tumour to reach their potential and thrive.

Trustees’ annual report and accounts brainstrust – the brain cancer people

1 April 2020 – 31 March 2021

Contents

1 Our challenge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Chief executive’s introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Why we are here and what we do: brainstrust ’s objectives and activities . . . . . . . . . . . . . . . . . . . . 4–6 brainstrust 5 ’s vision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Our values . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Achievements and performance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7–24 8 Our support, our research, and the impact we are having . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Progress with our mission . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Overall impact and progress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Bringing the brain tumour community closer to research and research closer to the community . . . . . . 18 Our new look . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Your support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 Support from trusts and foundations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Diversity and inclusion at brainstrust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Financial review 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Structure governance and management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26–30 29 Collaboration, networks and advisers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Accounts 31–58 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Reference and administrative details 59 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Declaration 59 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Our challenge

‘Facing your own mortality is a big thing when you’ve got young family.’ Patient , Kent

‘I’ve been strange. I left work. I cleared the house out thinking that this was the end. Family are at a loss as to what to do with me.’

Patient , London

‘I feel like I’m in a fight with my hands tied behind my back.’ Caregiver , Liverpool

‘I can’t tell you how much better it has made me feel just reinforcing that I’m not alone and there’s a whole community out there, because at first it doesn’t feel that way!’

Patient , London

Brain tumour support and brain tumour research is under-funded, the needs of the community are under-acknowledged, and the impact of the disease is under-reported .

But these facts don’t help you when you hear the words ‘you have a brain tumour’.

A brain tumour diagnosis brings with it the double impact of a cancer diagnosis and a progressively debilitating neurological disease . The treatment is complex and nearly always harmful, and diagnosis brings with it enormous impact on well-being and mental health . Fear, isolation, disempowerment and loss of control abound .

This is where the brainstrust community helps.

We are for a world where people with a brain tumour are involved, resourced, supported, confident and connected . They are living the life they want, because they are people first and patients second .

We provide personalised 24/7 support from the point of diagnosis and build resources that help people with a brain tumour to become stronger . We also work with people in the clinical setting to secure the best care possible for people with the condition . And because we truly understand the challenges faced by the brain tumour community, we’re able to campaign appropriately and effectively to solve real issues .

In the last 15 years, we’ve helped thousands of people on their brain tumour journey . Our impact is evidential . And with your support we can help even more of those who need us .

More than

60,000 people in the UK are living with a brain tumour diagnosis

40% of all cancers spread to the brain

It is the most common form of cancer in people under

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40
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brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

1

Chief executive’s introduction

If the previous year ended with the spectre of an impending global crisis, dealing with the full force of that crisis has been central to brainstrust ’s activity for this year in review.

Put simply, because brain tumours didn’t stop for Covid-19, neither could we .

• l We launched the Covid hub so people could understand issues and updates pertaining to treatment and shielding .

• l Our policy work pivoted to engage with the NHS at the highest possible levels to ensure that the needs of our community were heard .

From the outset all at brainstrust recognised that extraordinary times called for extraordinary action . In April 2021, we committed to being invaluable – to each other, to our friends and families and to the people in the brain tumour community who needed us . We vowed to do this within the framework of our strategy ‘first we are people’, which resonated with our community more than ever before in the context of this crisis, and we committed to making sure that on every step of the journey, we would be creating a chapter in brainstrust ’s history that we would be proud of .

• l We embarked on unprecedented levels of outreach work – reaching out to those who we knew would be alone and afraid, to help them feel better .

• l We made it clear that we were very much open for business with mailings and updates to the clinical community explaining changes to our services and changes to the needs of the brain tumour community .

We also faced the challenge of funding this work .

Cancelling all public events equated to cancelling brainstrust ’s 2020 fundraising calendar . But our supporters rallied behind our emergency appeal; existing funders pledged flexibility, and new funders came on board to ensure our work didn’t stop . For this, we are eternally grateful . We harnessed innovative, new approaches to fundraising throughout the peaks of the pandemic and were able to bring back the limited number of people who were placed on furlough late in the summer .

We recognised immediately that people with a brain tumour would be more isolated than ever before, because of shielding and isolation; more afraid and confused than ever, because of continually changing restrictions, changes and delays to routine monitoring and treatment; and less engaged with care, because of remote appointments and closure of local services . We were also aware that the people who needed us would have less of a voice because of the focus of campaigning on getting services ‘back on track’ rather than building better .

Not only did we pivot and adapt, but we have also been extremely generative during this period . We have updated our brand and identity to better align with our ‘people first’ strategy . We have launched new resources, including a new website for little brainstrust , our dedicated arm for children and families, and a new hub for the forgotten but important community of meningioma patients in

With the team comfortably making the shift to home working, we were able to look at services and how we could maximise impact .

• l Events moved online to give people every possible opportunity to engage and connect, laugh and learn .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

2

the UK . We have engaged more closely with the clinical community, and the shared challenge of the pandemic has meant even closer cooperation, collaboration and communication with other charities .

Focused and effective governance during a crisis is vital, and brainstrust ’s leadership team and board of trustees stepped up to the challenge from the outset . Meetings moved to monthly and were conducted remotely with full attendance for the year in review . We prepared contingencies, appraised risk dynamically, and budgets and forecasts were reviewed and updated monthly .

The result? It has been a challenging year, but one of which we are immensely proud . In the context of Covid-19, we have surpassed all expectations in nearly all areas of our work . We have been able to help more people and have more impact in more ways than ever before . However, we are

painfully aware that there are still many people who have not been able to access brainstrust ’s coaching, support and information . These people will be lost, afraid and alone in the face of a devastating diagnosis . We are working now towards achieving our greatest possible success in the circumstances . Key to this will be reaching more people with a brain tumour sooner and galvanising a wider community around our vital mission . No person with a brain tumour should feel lost, afraid or alone . Everyone diagnosed with a brain tumour should have the opportunity to seek support from brainstrust and join our movement for person-centred care .

After all, before we are patients, we are people . We thrive for the things that inspire us as people, not those that we must do as patients .

Will Jones

Chief Executive

‘I can’t thank your charity enough. When I phoned, I actually wasn’t sure what I hoped to achieve. I have been really struggling and really needed to talk to someone – Jodie was amazing, especially as I was a stranger to her and called and then just burst into tears, but then, after chatting to her for some time, she really made me feel so much better. For the first time in a long time, I feel I have a bit of control over my condition, even if it’s just to know there is help out there.’ Patient , Sussex, June 2020

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 3

Why we are here and what we do: brainstrust ’s objectives and activities

First, we are people.

In April 2019, we launched our current strategy. Fourteen years in the making, this strategy, ‘First, we are people’, puts laser focus on the human, practical and cultural contexts in which people find themselves following a brain tumour diagnosis. It sets out our journey to help these people become less isolated, more in control, more engaged with their clinical care and condition, and better resourced.

The human context sees a forgotten group of people who, following diagnosis, see themselves fall into a chasm between improving clinical care and the scientific pursuit of a cure . In acknowledging that before we are patients, we are people, we can help people navigate this void, for when we are patients, we are only patients for a small amount of the time . We want to do things that people want to do, not always the things that patients have to do .

In practical terms, we know from our intimately close work with our community of people with a brain tumour, and their caregivers, that a brain tumour is isolating, confusion abounds following diagnosis, communicating well is hard, behaviour and personality change devastates relationships, fatigue impacts 95% of those diagnosed, and there is a huge financial impact as work stops . These are just some of the challenges, and these challenges are not addressed in either the laboratory or the hospital .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

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brainstrust ’s vision

To make this happen, we aim to:

• l help people overcome fear

• l help people to engage with their challenges and care

• l eliminate isolation

• l improve knowledge and understanding.

A world where people with a brain tumour are involved, resourced, supported, confident and connected. They are living the life they want, because they are people first and patients second.

Through our work in the following areas:

• l coaching and support

l building communities

• l information and education

• l regional insight and relevance

• l clinical engagement, development and network building

l engaging people with research.

Which is only possible with:

• l effective fundraising l efficient marketing and promotion

• l administrative support

• l good governance.

‘We are working relentlessly and single-mindedly towards achieving our vision. The framework for strategic planning at brainstrust consists of a 12-month plan, threeyear goals and a five-year vision. This is an effective model that affords flexibility and the ability to be reactive to risks or opportunities as they arise, while ensuring we are working to achieve our longer-term goals to transform life for people with a brain tumour.’ Chris Baker, Chair of Trustees

Our values

brainstrust is underpinned by a set of values that are core to not only our services but everything we do.

We are ...

l tenacious

l honest

l positive

l relevant

l challenging

l personal

l attentive

l strong

l enduring

l curious

So our community feels ...

l engaged l acknowledged

l at ease

l expert in themselves l in control

l able to question l resourced l confident l not alone

l just

l enabling

l community-led

6 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Achievements and performance brQlnBtn￿t trustees. annual report ana accounts: l April 2020 to 31 March 2021

Our support, our research, and the impact we are having

‘This community makes me feel not so alone any more. Just knowing that there is a place where I can go to for advice and support if and when I need it is so comforting.’ Patient , March 2020

During the year we were able to provide coaching, support and information directly to

604

new patients or caregivers , and our team handled

1,662

one-to-one contacts by phone or email.

1,034 people attended 128

online events.

These events were either social events to help people tackle isolation and to build communities, or educational expertled webinars to help people engage with their care and take control of their care and condition.

The brainstrust online support group grew to

2,879 members.

91.4% (1,241/1,358)

of visitors who engaged with evaluation told us that brainstrust ’s online information helped them feel more resourced, more confident or more in control.

136,269 people sought information on brainstrust.org.uk , visiting 315,441 pages.

8 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Adapting to working in the pandemic

We were quick to establish a dedicated Covid-19 support hub, refocusing our information and policy activities to make sure that news and information was shared and explained in a manner that was relevant, accessible, trustworthy and easy to understand for people with a brain tumour: www .brainstrust .org .uk/corona-comms . Topics covered include shielding; vaccines, risk and efficacy; personal stories; and the impact of the pandemic on brain tumour care and treatment . Five thousand people accessed the hub to the end of March 2021 .

This year, connecting with others in a similar situation has proved to be more important than ever before as our communities found themselves isolating and shielding . Our shift to online events has helped us to reach more people at a time when it has been most needed .

Through offering online events and support groups, we have been able to remove geographical and physical limitations to the building of communities, helping people to feel less isolated and more connected to others .

Our strong ongoing relationships within the clinical community have resulted in many leading experts and clinicians giving their time and sharing their expertise generously with us through brainstrust delivering webinars for the benefit of ’s community . The knowledge shared has helped people to feel more in control, more resourced and better engaged with their own care .

The opening up of our webinar series to healthcare professionals has ensured that some of this expert knowledge has been shared more widely within clinical communities, meaning that broader patient care is positively impacted through increased knowledge and understanding of the specific issues faced by our community .

‘It’s been tough, challenging, exhilarating, stressful, plus a load of other things. But good has come from it – not least in the fundamental belief that we are needed more than ever, and in our ability to deliver no matter what. It’s down to the team!’

Helen Bulbeck , brainstrust Co-founder and Director of Services

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 9

Progress with our mission

‘Our mission is clear and well defined. We work in a very focused way to drive progress against six impact indicators, which in turn help us with our strategic aims. In creating control, improving engagement, tackling isolation and helping people to feel resourced and supported, we will eliminate loneliness, overcome fear, improve knowledge and understanding, and help people be at the centre of their care.’ Jane Gardiner , Head of Support, brainstrust

1. Creating control

‘I can’t thank your charity enough. When I phoned, I actually wasn’t sure what I hoped to achieve. I have been really struggling and really needed to talk to someone – Jodie was amazing, especially as I was a stranger to her and called and then just burst into tears, but then, after chatting to her for some time, she really made me feel so much better. For the first time in a long time, I feel I have a bit of control over my condition, even if it’s just to know there is help out there.’

Patient , Sussex, June 2020

All our services work synergistically to instil confidence and help patients take control . During the course of the year, those who engaged in evaluation reported, on aggregate, that they felt 20% (0.95/5) more in control having engaged with our work .

Accessing simple, factual information about brain tumours can be difficult due to conflicting information being available, which can leave people feeling confused and overwhelmed .

This year, we significantly expanded the library of brain tumour Know Hows . This gives the community access to concise, clear and impartial information about topics that are relevant to them . The Know Hows are divided into different categories, including information designed to

help people become more in control, engaged with their clinical care, and better resourced .

We produce Know Hows in response to topics that we are regularly contacted about by our community . Additions to the Know How library include ‘How to prepare for medical appointments’, as a response to concerns raised about the shift from face-to-face to phone consultations during the pandemic, and ‘How to deal with scanxiety’, a topic of concern to the community and one that is more pertinent due to delays in MRI scans and increased waiting times for results as a result of the pandemic .

Counselling also continues to play a vital role in helping people with a brain tumour, and their caregivers, to live life proactively and to the best of their ability following diagnosis . Yet it is a service that remains notoriously hard to access . In acknowledgement of this, brainstrust has developed a network of rapid-access counsellors who can provide help to people in the brain tumour community . This network provided over 200 counselling sessions last year, helping people to feel more in control .

Trusted information is key to helping people take control .

10 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Initial and final score against impact indicator

On top of things

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2.69 3.64
1 1.5 2 2.5 3 3.5 4
brainstrust ’s impact
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‘Not only [have you] been so patient with us due to my dad having so much upheaval and his first ever seizure last week. But the lady I had counselling me, was just wonderful and so incredibly kind to offer me a further six sessions of counselling, which finished today.’

‘The imaging webinar gave me the confidence to open a conversation with my oncologist yesterday about my scans, and I actually felt able to question what was being proposed. We had what I feel was a really positive conversation. The webinar gave me the confidence and knowledge that I needed – I wouldn’t have been able to do this before.’

2. Helping people engage with care and their condition

We recorded 1,034 attendees at 128 webinars during the year, supported by 10 expert speakers covering topics that included:

l understanding imaging

• l treatments

• l epilepsy

‘I am an occupational therapist working within cancer care, and this webinar was very informative and taught me lots about radiotherapy that I didn’t know in such detail. It will help me to understand this treatment better and to explain this to clients I meet who have questions about it.’

Many of the coaching conversations that took place during the year (of which there were 1,662) were to prepare people for consultations with their clinical team . These conversations were particularly relevant this year because of the increased anxiety caused by a shift to telephone consultations as a result of the pandemic .

Engaged with clinical care

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3. Eliminating isolation

Isolation has been exacerbated for the brain tumour community during the pandemic . Our peer support service is resourced by 30 volunteer peer supporters who can help people in similar situations to them deal with such issues as awake brain surgery, fatigue, the impact of radiotherapy, managing behaviour change and much more . The current active caseload for this group is 15 people, and we are looking to grow this over the coming year . Our Meetup social events took place online with 361 attendees .

• l power of attorney

• l managing anxiety

• l hypnotherapy

• l fatigue

• l cannabinoids

• l diet and nutrition

• l dry mouth

‘ [brainstrust] helped me understand and find a solution to an ongoing problem no one has been able to help with, so appreciated. Thank you.’

Less alone

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1 1.5 2 2.5 3 3.5
brainstrust ’s impact
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brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 11

‘This is the third webinar I have done, and they have all been really welcoming and friendly, and full of useful tips and information. It is really comforting to know that you are not alone, and there are people willing to help. Thank you!’

‘It was well organised and everyone was friendly. Smiling faces, as well as difficult sharing of challenging experiences. I enjoyed meeting some other people with my sort of tumour. This was new.’

4. Helping people feel resourced

Robust, reliable, accessible and expert information is a cornerstone of our work, personalised where possible to meet the specific needs of the recipient .

In addition to our educational events, this year 248 people received a brainstrust brain box, and our wider library of resources remained in high demand .

Topics we cover expanded to include dedicated information for people diagnosed with meningioma, and as part of our brand update, we restructured our library of online information to make it more accessible to users .

‘I’m so glad there is something that supports people with a meningioma. I’m heading there right now!’

‘This is so brilliant ... brainstrust , you’ve done it again! Thank you … You’ve no idea how much this will help us – our very own site! I really needed to see this today. You’ve never failed me yet.’

‘We’re thrilled at the launch of brainstrust ’s new website dedicated to providing advice, information and support to people with a meningioma. We hope it will help people like us navigate their way through diagnosis and treatment and, perhaps most importantly, live well with a meningioma. A huge thank-you to all our supporters who helped us raise the funds for this amazing resource.’

Resourced

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brainstrust ’s impact
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‘Each time I attend a webinar, I learn more, helping me to cope and accept better. No one else is able to offer this.’

Accreditation of our health information remains critical to us and ensures we can be confident that our information is robust, accessible, authoritative, evidence-based and trustworthy . With the cessation of NHS England’s Information Standard mark, we have begun the transition to the PIF TICK standard to ensure continuity of rigorous process and quality . Ongoing review of resources and expert input into our information will continue as a result .

5. Making sure people feel supported

There were 604 new people who contacted brainstrust by phone or email for information or coaching, and during the year, our team handled 1,662 one-to-one interactions . This has contributed to sustained impact during a difficult time for the brain tumour community .

Supported

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‘Hearing other people’s experiences and realising that I’m not alone in many of the thoughts that go through my head. Although I can’t control what is happening to me, I feel I now have a better understanding of a way to approach things, and a framework of things to try.’

12 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

‘Always good to know that other people understand what you are going through and will listen without judging you.’

‘It spoke to me about all the issues of the unknown I’m currently facing. It was great to see how I feel reflects what others might also be feeling. To have this support means so much to my well-being improvements.’

To ensure we are providing the right level of support to the right people, and to help us manage an increasing ongoing caseload effectively, we have introduced stratification of our support for patients and caregivers . This acknowledges that some people may only need a ‘light touch’ and others much more intensive help .

6. Building communities

With the nation having to stay at home, connecting people has been harder than ever this year for people with a brain tumour . However, we have seen remarkable progress with online tools providing opportunity to help people with a brain tumour to connect .

The webinars and Meetups have contributed greatly to building on our work to date, and have enabled us to facilitate growth of community in novel ways . For example, people from across the UK have been able to connect based on factors broader than geography, including diagnosis, age, stage of disease and key concerns in common . Whereas before people looking to connect regarding one of these topics may have been too far apart, online communication has made our communities tighter and more relevant .

Diagnosis-specific groups have proved to be particularly popular, running monthly and attracting between 12 and 20 people, who have been eager to discuss issues that are pertinent to them – for example, epilepsy with low-grade glioma .

‘Thank you to all who run these webinars. I gain so much, from learning and understanding to having a welcome break from reality and being able to be part of a community where we can relate to each other’s experiences.’

‘I really valued the chance to speak to others also living with a meningioma. Thank you.’

‘Good to meet people in “live” time, not just on a Facebook group.’

Part of a community

2.84 3.96 1 1.5 2 2.5 3 3.5 4 brainstrust ’s impact

brainstrust Meetup on Hove Lawns – a rare opportunity for the community to connect in person safely during the pandemic.

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 13

Overall impact and progress

The figure below shows improvements made for each of the six indicators that were described as most important by our community.

• l On average, people have progressed nearly a whole point (0.96/5), or 19.2%, across the six indicators, meaning they feel they are moving towards a less difficult position .

• l This is slightly down from last year’s average of 23%, which may be related to our events and Meetups moving online .

• l Despite this, we are making the biggest impact in helping people to feel ‘part of a community’, as this sees the highest average increase with 1.09

• l We are also helping to guide and make others feel less alone as the indicators ‘resourced’ and ‘supported’ follow closely, both with an average increase of 1.03

• l The smallest increase comes from ‘being engaged with clinical care’, with a 0.66 difference, which we hope to improve in 2021 after launching our Patient Research Involvement Movement (PRIME) .

• l In 2020–21, 61 individuals completed two or more progress trackers, and 115 completed their first, giving us a good insight into the current state of our beneficiaries .

The figure below shows the improvements made across brainstrust ’s four strategic priorities.

• l On average, people have improved nearly a whole point (0.97/5), or 19.4%, across the priorities .

• l All points have increased by a similar amount, the smallest difference being ‘engagement’ (with 0.84/5) and the highest being ‘isolation’ (with 1.05/5), meaning we’re balancing the impact we make on improving each of these key areas for our community .

14 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Bringing the brain tumour community closer to research and research closer to the community

Patient and public involvement and engagement (PPI&E) in research is a growing area of work for brainstrust . Increasingly people want to understand their options regarding clinical trials, know that they have left no stone unturned, and contribute to clinical research to help others.

Our PPI&E activity is aligned increasingly with our mission as the patient community becomes more informed about its options . Research-engaged patients feel more supported, more engaged with their care and condition and more confident about their choices . Our role is to build the community of clinical research participants and advocates to grow the community for the benefit of the clinical and patient communities .

The year 2020–21 has been the year when we have capitalised on the groundwork laid over the last five years . We have made a concerted effort to activate our clinical research offer, a consolidated collaboration between the clinical research community and people living with a brain tumour . This has been grounded in evidencebased healthcare, healthcare data and what is meaningful to patients and their caregivers . Never has this been more important . A genotype does not explain how a person perceives their health state, what motivates or stands in the way of behaviour changes, or what life events are competing with the ability to maintain both

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Connecting people with science in an engaging way is a
key part of our work to help people feel more in control
and more informed after a brain tumour diagnosis.
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health and well-being . The thrust of integrated care systems is towards system-wide outcomes measurement, but there is a case to be made in that this loses sight of what is key to this – the person living with the disease and what matters to them . There is no story to be told without the patient – the patient is the only form of data – and the value the patient brings to the agenda exceeds that of the purely clinical . And so the opportunity here is significant – with investment in brain cancer research, we are growing our involvement so that brain cancer is represented equitably across all brain tumour types and across the trajectory of the disease, from pre-diagnosis, through diagnosis and treatment, living well with a brain tumour, to recurrence where applicable, through to end of life and beyond . This needs to be done with objectivity and consistency, with both the patient and the caregiver at the centre so that this is reflected in the clinical research agenda . We know that inequalities exist around treatment options and care pathways, that recurrence and end of life care remain areas to address, that we need more people signing up for clinical research, that there is ambiguity around patient-reported outcome measures (PROs) . There is clear scope and opportunity to stimulate research in this area, and with increased public awareness, we are set to take this forward in 2021 .

So what does this look like? This has been addressed through four channels, the underlying principle being to bring our community of people living with a brain tumour closer to clinical research and vice versa .

The first channel has been the development of a new portal for clinicians on our website, brainstrust .org .uk/healthcare-partners, so that

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 15

----- Start of picture text -----
Our research advocates meet online and in person
to support investigators with clinical research.
----- End of picture text -----

So we’re proud to have launched our Patient Research Involvement Movement (PRIME) this year . This is the mortar for our PPI work, with people who are living with a brain tumour placed at the heart of this work . PRIME members are research advocates who are integral to the clinical research landscape . Project objectives are:

• l to be the ‘go to’ for the research community

• l to have people at the centre

• l to strengthen the quality/relevance of applications so that more funding is attracted

• l to be multidisciplinary and multicentred

• l to be co-produced

we can improve our visibility in online searches and prioritise refreshing clinical relationships now that things are settling after a challenging 2020 . We have a significant library of clinical research generated by brainstrust , which deserves a shopfront so that clinicians and people living with a brain tumour can access up-to-date research about the things that matter to them .

The second channel has been to harness the energy that we know sits within our community; people want to be involved in research but don’t know how . To date, brainstrust has developed public and patient involvement (PPI) strategies for over 80 neuro-oncology trials and represents PPI at co-applicant level in several multicentred 20 million trials . This work has attracted around £ to the neuro-oncology clinical research landscape and ranges from lab-based research focused on the epidemiology of brain tumours (ICEP2, £3.1m), neuro-oncological (APPROACH £6.3m) and neurosurgical research (FUTURE GB £1.7m) through to research around quality of life (BTLife £200K) . It understands what gold standard PPI looks like, so that it is in the DNA of a trial, and has co-led the NCRI steering group for 100 NCRI consumer representatives . It has developed PPI strategies for trials, for societies such as the British Psychosocial Society (BPOS), for academic institutions such as the Clinical and Translation Radiotherapy Group (CTRad) and for organisations such as IQVIA, a world leader in using data, technology, advanced analytics, and expertise to enable a more modern and effective healthcare system that transforms patient outcomes .

• l to increase capacity within brainstrust so that we have more people involved in more trials

• l to be seen as a leader in the field .

Our third channel has been our work around PROs . We have been privileged to have been part of the development of the COBra (core outcomes in brain tumour trials) study during 2020 . Our PRIME advocates will be involved in this . There is a need to create a standardised approach to measuring patient-centred outcomes that directly reflect the goals of the study under consideration and that are capable of measuring the impact of the proposed intervention . This will ensure:

• l a consistency of approach in the types of measure used, across trials and units

• l accuracy in matching those measures to the outcomes expected of an intervention

• l diligence and compliance in data capture, analysis and reporting

Dr Wai Liu is a senior research fellow at St George’s. His work focuses on developing novel approaches against cancer. These involve modifications to drug regimens as a way of enhancing the overall activity of chemotherapy. Dr Liu has presented regularly to the brainstrust community to help people understand cannabinoids and associated research.

16 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

• l adoption of international guidelines, standardising how PROs and health-related quality of life measures are incorporated into intervention trials, a standardised approach to analysis of PRO data, and minimum standards for the reporting of PRO data .

The outcome of this work will be the development of a core outcome set (COS) for use in high-grade glioma trials using the methodological approach recommended by the Core Outcome Measures in Effectiveness Trials (COMET) initiative . Patient and public involvement (PPI) is central to this work, with experienced representation and a clear structure for involvement and measurement of impact .

Our last channel to bring the communities closer has been the launch of the neuro-oncology special collection, in collaboration with the Cochrane organisation . The publication of the latest Cochrane systematic reviews on brain tumours brings together years of collaborative effort to transform the clinical research landscape and make it relevant for people living with a brain tumour .

So what are these reviews? Why are they important, and how do they fit into the bigger picture? Systematic reviews identify and analyse all research published on a particular topic – providing reliable insight into the effectiveness of interventions, highlighting where knowledge is lacking and, crucially, providing a guide for future research . Transparency in the research selection process is vital to ensure there is no conflict of interest, or bias towards cell-based research, which can detract from the clinically relevant research that the brain tumour community needs .

The findings of the reviews can be categorised into three broad research areas, representing the interests and concerns of people with a brain tumour:

• 1 . getting a prompt, safe and accurate diagnosis

• 2 . shared decision-making and risk sharing in glioma

• 3 . understanding the best treatment when decisions are difficult .

These systematic reviews have already supported many recently funded, NCRI-adopted studies . These include Future GB – a neurosurgical trial looking at different technologies – and the Spring trial, which explores the use of prophylactic antiepilepsy medication in patients who are having brain tumour surgery .

Collaboration is the key to change

At every stage of this process, people living with brain cancer have been in the DNA of this work: identifying the topics, applying for funding of the reviews, ensuring the lay summaries are simple and accessible, and developing future studies through the NCRI .

This transformation of the neuro-oncology clinical research landscape wouldn’t have happened without this genuine collaboration between patients, their caregivers and the clinicians who brainstrust support the brain tumour community . has been in the DNA of this work since the very first conversation about this happened in 2013 . Our ability to be the mortar, reaching all stakeholder groups, has been a key component of the success we’re celebrating today .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 17

Our new look

In 2020 we updated our key messages and visual identity, to better communicate our ‘people first’ strategy. brainstrust ’s name, logo purpose, activities and team remain seamlessly aligned, but with these updates, we are now doing a better job of saying why we are here, who we are and what we do, so that even more people from all walks of life brainstrust can share an affinity with and benefit from our high-impact support.

‘Being diagnosed with a brain tumour is devastating, and it’s easy to become locked into a relentless medical process that forgets we are human. We may be patients, but first and foremost, we are people. Our mission is to support those with a brain tumour with a focus on the very human needs they have at each and every step of their journey.’

Ben Young

Trustee, brainstrust

‘Reflecting our strategy, this evolution in our look and feel centres people at the heart of everything we do. We’re the same organisation, with a streamlined look that demonstrates clearly how we make life better for people with a brain tumour. Bolder statements (rooted in evidence) and updates to our colour palette reflect the optimism of our belief that with access to brainstrust support, community and resources, everyone with a brain tumour can have their best possible day.’

Eve Flynn

Communications Manager, brainstrust

18 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Your support

In 2020 our supporters raised £740,623 to support brainstrust ’s mission . Despite the gloomy outlook at the beginning of the year because of the pandemic, our team and community galvanised rapidly around what needed to be done to grow our services in the face of increased and more complex demand . While income remains from a diversified mix of traditional charity fundraising activity, because of the nature of the government restrictions put in place during the pandemic, we have seen greater reliance on support from trusts and foundations, and also welcome support from the UK government, who were quick to see the vital contribution that healthcare charities such as brainstrust can provide during a time of national crisis .

Our funding comes from:

• l trusts and foundations

• l direct and regular giving

• l companies who support our work

• l sponsored events and challenges

• l community fundraising

• l Gift Aid recovery

• l in memory giving

• l trading

• l UK government support relating to the Covid-19 pandemic .

We have limited income from special purpose fundraising, legacy fundraising and high-net-worth individuals and minimal investment income, instead keeping cash available to provide liquidity and flexibility so that we can react promptly to the needs of our community .

Our income 2020–21

Our expenditure 2020–21

----- Start of picture text -----
Government Covid-19 pandemic
Legacy giving: £2,000 support: £67,096 Governance: £13,038
Personal donations: Generating income:
Interest: £40 £38,707
£77,539
Partner fundraising
groups: £45,219
Team
brainstrust :
£62,477 Grants
Community Total income: from other Total expenditure: Charitable
fundraising: charities activities:
£41,404 £741,090 and public £511,271 £459,526
Trading: bodies:
£11,013 £358,669
Gift Aid
recovered:
£33,437
Corporate support:
£42,196
----- End of picture text -----

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 19

Just some of brainstrust ’s fundraising highlights for the year include:

Hot cross run

Good Friday (2 April 2021) saw friends Stephen Miller and Rob Eagles take to the 2.2-mile track at Liverpool’s Sefton Park to complete a 24-hour endurance run to raise funds for brainstrust and Molly Olly’s Wishes. This event was the latest in a series of runs Stephen has completed in support of brainstrust since losing his mum to a GMB in 2013, raising a huge grand total of £6,032.

The Great brainstrust Create-Off

Taking self-care as our theme for Brain Tumour Awareness Month 2021, this challenge took the definition further than bubble baths and invited

participants to explore their creativity as a route to unwinding, relaxing and recharging . The winning drawing and paintings will feature in the forthcoming brainstrust 2022 calendar .

Running for Jacob

After her son Jacob underwent a series of treatments for a craniopharyngioma, Heather felt she wanted to ‘bring something positive and give something back’, so she took on the Run, Row, Ride 30-mile challenge in November 2020 . She was quickly joined on the challenge by other family members, and they raised a brilliant total of £1,200 .

Maidstone Harriers support #TeamSeth

TeamSeth is a movement that grew up around seven-year-old Seth and his family, the Dickensons, and saw Maidstone Harriers host a virtual 10K race in February 2021 – with optional pirate costumes. The competitive running club counted Seth’s mum as a member, and in support of the family, they opted to donate the entire profits of the race to brainstrust , raising over £3,500.

Women On the Move Against Cancer (WOMAC)

The start of 2021 saw WOMAC (Women On the Move Against Cancer) announce that brainstrust had received the nomination to be their charity of the year . With a range of fundraising initiatives planned throughout the year, including putting together a team to run the London Landmarks Half Marathon and hosting Weeks for WOMAC, cake sales and trying some wild swimming .

20 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

The Brain Tumour Twins

Janice and Elly originally met while working for Buckingham Palace, and they became not only friends but also roommates . Sadly, the friends both received the same meningioma diagnosis, but

despite the devastation that a brain tumour diagnosis brings, Janice and Elly’s bond grew even stronger because of their shared experience . Now, on a mission to connect and support the wider brain tumour community, Janice and Elly have created ‘The Brain Tumour Twins’, raising funds for brainstrust in support of others with a meningioma diagnosis, with a total during the year in review of over £3,100 .

Mairi’s lockdown challenge

Maximus Foundation UK

Bethany’s motivation to nominate brainstrust for a donation from the Maximus Foundation UK came as a result of the support she saw her close friend Sammy receive on her brain tumour journey . The nomination was successful, and braintrust received £2,500 in November 2020 . The Maximus Foundation UK has the aim to help people in need through supporting the charities who work with them .

Geoff’s year of challenges becomes a two-year challenge

Inspired to take on fundraising challenges as a result of the support his friend received from brainstrust , Geoff Worsley initially set himself the task of fundraising through a year of challenges, starting with his first half marathon in February 2020 . The onset of lockdowns did nothing to dampen Geoff’s determination, as events went virtual, and he continued to train and run to raise for brainstrust . Alongside support from friends and family, Geoff has also been sponsored by three generous companies, TBSC, GeminiSix and SAM Charter, raising so far over £1,300 . And Geoff has still not stopped running and already has a very full programme of events for the rest of 2021 .

The postponement of Follow the Seagulls due to Covid-19 did not stop supporter Mairi from carrying out her own challenge in support of brainstrust and in memory of her husband, Michael . Determined to support others, Mairi moved her challenge from the Seagulls route 2021, around Fife to her flat in early April completing 50 miles on a cross-trainer in just three days and smashing her £1,750 target .

Emma Mosley and #BrainTumourAwareness Month

Emma knows all too well the impact of a brain tumour diagnosis, as she received her own in early 2020. So, during #BrainTumourAwarenessMonth, to celebrate TEAFEST, Emma pulled out all the stops,

hosting two fantastic community fundraisers to raise money to support people with brain tumours. Emma joined the Rock Choir rehearsal at Newburgh Primary School to provide refreshments, cakes and a raffle, and she also arranged a TEAFEST event at a local community centre, raising over £640.

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 21

Support from trusts and foundations

Government restrictions last year made community and challenge-based fundraising increasingly difficult to deliver, with the postponement and cancellation of many events and so we shifted to a more grant-focused income plan. Competition in this arena is always fierce, even more so this year, as many charities felt the pinch of the pandemic.

We were fortunate that our existing relationships with several funders provided us with unique opportunities, and we were also successful at forging new partnerships with grant makers with whom we hadn’t previously worked .

The National Lottery Community Fund (TNLCF) was very supportive in allowing us to temporarily repurpose existing funding . We were also successful in securing an £8,000 Awards for All grant to rebuild capacity for our service in Scotland . TNLCF was also one of the chosen distributors of government support, and through this scheme, we were able to secure an additional £93,000 of income to cover our general operating costs .

We would also like to express our gratitude to a new brainstrust partner, the Edward Gostling Foundation, who, after funding an initial bid, invited us to apply for (and awarded) a second grant of £2,500 for our work . We hope to maintain this relationship into the future .

Further generous support was secured from The Rank Foundation . We were successfully awarded three separate grants from its own philanthropy schemes, and a DCMS-backed Recovery Grant, together worth over £50,000 . In addition, we were also invited to apply for two new funded positions through the Time to Shine programme, both applications were successful and have enabled us to add two additional team members to build capacity in our research, impact and project management activities .

We are truly grateful for all the support made available to us from trusts and foundations . We acknowledge that we have secured an unusually high proportion of grant funding compared to other income streams for the year in review, but we also acknowledge that these are unusual times . The strategy has been appropriate for the circumstances, but our challenge and focus now is to rebalance our typically diverse fundraising portfolio .

22 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Diversity and inclusion at brainstrust

This year we have been involved in an important and challenging conversation about our inclusivity as an organisation. Breaking this vast topic down, we have focused on three areas where we can have an impact: internal, external and societal.

Internal: How diverse and inclusive are our team and our internal practices? What do we need to do to tackle unconscious bias internally and support the members of our team from minority groups?

External: Who are we prioritising with our work? Who are we missing? How can we make our services more inclusive?

Societal: What can we do at a policy level? How can we influence change outside our immediate circles?

It’s been important that the whole team input into this work . We set up a working group with representation from different teams across the organisation, with the role keeping momentum going .

Keen not to jump into this work from a position of ignorance, we spent time initially having honest conversations about where we are falling short, and we all completed an anonymous staff survey to give people an opportunity to share their honest feedback . Based on this survey and the conversations that followed, and accepting the fact that we cannot do everything at once, we have worked to identify the gaps and areas for improvement and meet regularly to update on actions .

So far we have made great strides addressing our recruitment process, improving our advertisement of roles, ensuring impartiality in selection by anonymising CVs and introducing an anonymous survey so we can monitor and track our progress .

Internally, we have undergone unconscious-bias training and have regular discussions around how we can ensure our services are appropriate for different audiences . We have committed to and are working on a programme to reach marginalised communities that are most in need of our services . Given the fact that brain tumours and their treatment are a cause of disability for many people, we are focusing currently on accessibility and disability .

How we’re already meeting the needs of people who access our services

As a charity, we are committed to meeting the diverse needs of our community and adopt an inclusive approach as standard . We are disability aware and take steps to ensure that our venues are accessible for our community in that they offer step-free access or a lift, hearing induction loops, accessible toilets and good public transport links . Many of our community follow particular

‘We’re exploring ways in which we can proactively reach out to more marginalised communities, and we’re continually monitoring what we do in order to try to ensure that we are offering fair and equal access to our services for everyone.’

Eve Flynn , Communications Manager

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 23

dietary approaches due to treatment and other diagnosis-specific factors, and these are always respected in our event catering offer .

Our resources are produced according to the PIF TICK standard, ensuring that they are easy to access and navigate . We regularly provide written resources in alternative formats to those with visual impairments, in the exact format that each individual requires .

The recent expansion of our event offer to online has ensured the inclusion of those who have previously experienced barriers to event attendance, such as mobility, transport, fatigue, support and childcare .

We’re listening – engaging with feedback

During the year in review we received no substantiated or notifiable complaints about either our services or fundraising practices .

We have robust policies in place for managing complaints and actively encourage feedback .

We are proud of our record of having never received a complaint about our work and will continue to encourage people to let us know how we might improve the way that we work .

Despite all this, we know that we can do better . We’re exploring ways in which we can proactively reach out to more marginalised communities, and we’re continually monitoring what we do in order to try to ensure that we are offering fair and equal access to our services for everyone .

24 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Financial review

The Trust’s published statutory accounts for the year ended 31 March 2021 are incorporated in this Trustees’ Annual Report, and include considerable detail on the source and application of funds, and the financial position of the Trust at 31 March 2021, as required by the SORP for UK charities published by the Charity Commission. This report comments on the main points of note.

In summary, gross income generated in 2020–21 was £741K (2019–2020 £607K) . The net surplus for the year was £230K (2019–2020 £17K deficit) .

The impact of COVID-19 on our financial year 2020–21 was therefore not entirely negative . On the expenditure side, as reviewed elsewhere in the Trustees’ Annual Report, brainstrust ’s charitable impact has been significantly increased due to measures as disparate as taking our support largely online (thus increasing our reach) to focusing to an even greater extent on what brings real benefit to our stakeholders and beneficiaries . Thus, overall expenditure in 2020–21, at £511K has been reduced from £624K in 2019–20, with, as covered elsewhere in this report, a quantified increase in impact .

The Trust’s gross income for 2020–21, at £741K, was, as noted above, a significant increase on the £607K raised in 2019–20 . Most community fundraising was severely impacted during 2020–21, through both the general Covid-19 restrictions and wholesale cancellation of public brainstrust events . However, still benefited from significant community fundraising, through organising some safe events while lockdown was eased during 2020, and, most importantly, by taking fundraising, as well as our charitable brainstrust support, online . ’s financial security was also enhanced through our regular grant income, successful application for a number of emergency grants, and the government’s Coronavirus Job Retention Scheme .

The majority of the Trust’s income, both general and restricted, is applied to supporting patients, their caregivers and families, from the point of a brain cancer diagnosis . Our support team has an emphasis on UK-wide geographical coverage, supported by the Big Lottery Fund and other substantial funders .

The Trust has only cash investments, deposited with NatWest Bank and The Co-operative Bank . At 31 March 2021, the Trust had net reserves, including our restricted income funds, of £415K (2020 £186K), which included net unrestricted reserves of £268K (2020 £79K) and net restricted reserves of £147K (2020 £107K) . The surplus for the year under review has been added to our general charitable funds .

The Trust has a policy in normal times of holding unrestricted reserves to cover four months of 31 March 2021, unrestricted defined core costs . At 6.7 months of reserves were sufficient to cover core costs, the excess providing a useful cushion as the UK, and especially the charity sector, begins to emerge from a very difficult period . The brainstrust team plans to continue with the growth and impact of its charitable support 2021–22 work, backed by secure finances, during and beyond .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 25

Structure governance and management

‘We believe good governance is an essential component of our success, particularly as we grow. It underpins our integrity, reinforces the trust and confidence our patients and partners place in us, and contributes to a strong high-performance culture.’

Chris Baker , Chair of Trustees

‘Focused discussions, an agile and adaptable approach to planning and sound cooperation between the appointed trustees and the managers of the Trust have ensured that brainstrust has continued to provide support and guidance for our patients, in accordance with its aims, while maintaining a secure financial footing.’ Gillian Bilbo , Trustee, brainstrust

brainstrust is constituted as a trust, governed by its Declaration of Trust, dated 4 March 2006 .

The overall guidelines for the management and administration of the Trust are incorporated in the Declaration of Trust, dated 4 March 2006, as amended by Deeds of Amendment adopted by the trustees under the terms of the original deed and notified to the Charity Commission .

This places overall responsibility for the proper governance of the Trust with the appointed trustees . Day-to-day management of the Trust is delegated to William Jones, who has been appointed chief executive of the Trust . The chief executive, supported by the leadership team, makes recommendations to the trustees on the Trust’s vision, patient and caregiver support, related research, financial fundraising, promotional activities and ensuring that funds raised are spent as efficiently as possible on resources that will be useful to people affected by brain cancer .

brainstrust ’s trustees have had regard to the guidance issued by the Charity Commission on public benefit .

Governance at brainstrust and Covid-19

Despite our board having to deal with their own personal and professional challenges during the pandemic, we quickly adapted . In liaison with the appropriate advisers, we ensured that online and telephone meetings constituted formal meetings, and in the face of a fast-moving situation in which our organisation had to adapt equally rapidly, we increased the frequency of our meetings from quarterly to monthly, as required by the current circumstances, and also ran regular drop-in sessions where the board could engage with brainstrust ’s dayto-day activities, successes and challenges . This ensured that trustees were abreast of brainstrust ’s activities, risks, impact and outputs in near real time . This meant decisions could be made quickly and with the most up-to-date information, ensuring that brainstrust would not only endure the pandemic, but provide the maximum possible public benefit throughout and beyond . We are mindful that brainstrust ’s trustees all give their time freely on a voluntary basis, and we are extremely grateful to every member of our board for their increased engagement and incredible support during this period .

‘Our management and board have worked totally in sync to make the judgements required to sustain both our current services and future prospects amidst such alarming uncertainty. None of us individually could offer the definitive answer, but together as a team and through intense dialogue, we crafted a robust path for success.’

Stephen Warrington , Trustee, brainstrust

26 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Senior staff contacts

William Jones , Chief Executive will@brainstrust .org .uk

Dr Helen Bulbeck , Director of Services and Policy helen@brainstrust .org .uk

Peter Bulbeck , Trust Administrator and Clerk to Trustees hq@brainstrust .org .uk

Kathy Springate , Head of Finance kathy@brainstrust .org .uk

Tom Cowie , Head of Income tom@brainstrust .org .uk

Jane Gardiner , Head of Support jane@brainstrust .org .uk

Trustees

brainstrust ’s trustees for the year in review are Christopher Baker, Kevin Higgs, Stephen Warrington, Gillian Bilbo and Ben Young .

The board of trustees meets formally four times a year to ratify the broad strategy and areas of activity for the Trust . In addition, trustees may meet with members of the team to work on specific projects . All trustees give their time freely, and no remuneration is paid .

In accordance with clause 9 of the Declaration of Trust dated 4 March 2006:

• (i) There must be at least three trustees . Apart from the first trustees, every trustee must be appointed by a resolution of the trustees passed at a special meeting called under clause 15 of this deed .

• (ii) In selecting individuals for appointment as trustees, the trustees must have regard to the skills, knowledge and experience needed for the effective administration of the charity .

• (iii) The trustees must keep a record of the name and address and the dates of appointment, reappointment and retirement of each trustee .

• (iv) The trustees must make available to each new trustee, on his or her first appointment:

• (a) a copy of this deed and any amendments made to it

• (b) a copy of the charity’s latest report and statement of accounts .

There are no exemptions from disclosure applicable to or within this report, and neither the charity nor any of its trustees are acting as custodian trustees .

Now in our 15th year of operation, we have an established national footprint across all elements of our activity . This is delivered with public benefit at the heart by a professional team with a professional leadership structure .

Chris Baker

Chair of Trustees

Chris is senior vice president at a global cloud content management company and has over 20 years’ experience driving growth at some of the highest-profile software companies in the world, including Microsoft and Salesforce . Chris has been a trustee for nearly nine years and the chair of trustees at brainstrust for four years .

Kevin Higgs

Trustee

Kevin is a financial adviser and has been a trustee for 12 years . In a chance meeting while at a previous employer, Kevin was immediately taken by the dedication and commitment of the charity to focus on the support and well-being of patients and families diagnosed with a brain tumour . He knew that he wanted to be a part of the ‘journey’ that brainstrust has been on since 2006

Stephen Warrington

Trustee

Stephen brings to the organisation extensive experience leading professional services businesses and consulting for major

multinationals, and has been a trustee for four years . Stephen’s teenage son was diagnosed with a brain tumour and underwent successful surgery .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 27

Gillian Bilbo

Trustee

Gillian is a retired headteacher and is now a school inspector, and she has been a trustee for eight years . She brings a listening ear and an objective viewpoint to the board and is supportive of fundraising initiatives .

Ben Young

Trustee

A former journalist, Ben has spent more than 25 years helping to inform, entertain and engage a wide range of audiences across multiple platforms . This has taken him from writing editorial, into advertising as a creative director, and on to the role of HR director at Time Inc, Warner Bros . and Ogilvy UK . He now works as a strategic storyteller . He is married, with four children, and lives in Northamptonshire . He joined the board of brainstrust in 2018

Puneet Plaha MBBS, MS, MD, FRCS(SN) (appointed 4 March 2021) Trustee

Puneet is an associate professor and consultant neuro-oncology surgeon in Oxford, with a specialist interest in brain tumours, especially endoscopic minimally invasive surgery and awake surgery .

He qualified in medicine from one of India’s premier institutes, JIPMER, Pondicherry University, in 1996 and completed his master’s degree in surgery from the same institute in 2000 . He undertook an MD degree from Bristol in 2011 . He completed his neurosurgical training programme as part of the South West rotation (Bristol and Plymouth) from 2005–2010 .

He is a consultant neuro-oncology surgeon lead for the Oxford brain tumour MDT, and he has been a neuro-ocology lead for Thames Valley since 2012

Key

l Governing, statutory and other bodies to whom we are accountable

----- Start of picture text -----
l Leadership team
l Patient services team
Trustee Trustee
l Fundraising team
l Marketing and production team
l Finance and operations Tru stee of TrusteesChair Tru stee
Patients Chief
Caregivers Executive Fundraising The
NCRI Regulator
NIHR The Charities
Commission
Public Health
England Director Trust OSCR
of Services
NHS Four Nations and Policy Administrator Statutory Auditor
JLA HMRC
NICE ICO
NCRAS Editor, Patient Head Head
Information of Income of Finance
Cochrane
Research
Resources Communications
Involvement Officer Designer Manager Project Officer
Officer
Support Support Support Support Support
Impact Challenge
Specialist Specialist Specialist Specialist Specialist and Research Fundraising Events
little brainstrust Scotland the south-eastLondon and Midlands Central southern England Officer Manager Coordinator
----- End of picture text -----

28 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Collaboration, networks and advisers

Our ethos is that ‘none of us is as smart as all of us’. Indeed, meaningful collaboration is a key component of our approach as we work to secure the best outcomes for anyone who is living with a brain tumour. Our partnerships, of which we nurture around 80, are global and fall into four themes:

to the community . You can read more about this work here: www .brainstrust .org .uk/cochranespecial-collection-launch . We are really proud of our clinical network, which has been pivotal in the success of our webinar programme in 2020–21 20 . We have a community of about clinical experts who have selflessly given up time and their knowledge to help people living with a brain tumour understand more about their condition, why at times it is hard to make a choice about treatment and how to live better with a brain tumour . This community is set to grow in 2021–22 . We are so grateful for the valuable and transformative expertise so generously gifted by this network .

Patient-focused

These include clinical engagement with the 35 neuroscience and neurosurgical centres, organisations that are relevant to our community such as Use My Data and the Patient Information Forum . Clinical engagement is a priority, as this is one way in which we can reach the community . It is, however, a two-way relationship, as healthcare professionals can visit our website and order resources for their patients, signpost coaching and other support services, and also take advantage of training opportunities, such as our expert-led webinars and coaching programme .

Clinically focused

Clinical collaborations are hubs of clinical practice and research, such as the British Neuro-Oncology Society (BNOS), the National Cancer Research Institute (NCRI) and the Cochrane Collaboration . This year we have launched the neuro-oncology special collection with Cochrane and the James Lind Alliance, a suite of reviews that share the evidence for some key topics that are relevant

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 29

Public Health

We work across the four Public Health nations . This year this work has been particularly significant, as we have worked closely with the Public Health government departments to ensure that our community is well supported during the Covid-19 pandemic . Whether this has been advocating for cohorts of people living with a specific type of brain tumour to ensure the treatment and surveillance that they need has been accessible, or using data from the National Cancer Registration and Analysis Service to reassure the community that waiting times and urgent referrals are at pre-pandemic levels, our work with Public Health has enabled us to keep our community updated in a meaningful and relevant way . We have established a specific area on our website to serve as the conduit between Public Health and the community . brainstrust .org .uk/corona-comms

Charities

We have always worked closely with charities when we have recognised that it is in the best interests of the community . Our collaborations with charities have become stronger and deeper during the pandemic . Challenges facing the third sector have meant that we have liaised more with like-minded organisations, which have not always been related to brain cancer . Collaborations have emerged that tackle challenges facing our communities and optimise the charity voices in what is a complex and noisy environment . One such example includes the development of our collaboration with Cancer Research UK, where we are working together to provide monthly intelligence on Covid-19 and its impact on cancer services and management of patients . This includes information gathered from CRUK, GPs and cancer charities, which we then share with the brain tumour community .

30 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Accounts brQlnBtn￿t trustees. annual report ana accounts: l April 2020 to 31 March 2021 ai

Registered Charity Number: 1114634

Report of the Trustees and Audited Financial Statements for the year ended 31 March 2021 for brainstrust

Harrison Black Limited

Statutory Auditor Pyle House 136/137 Pyle Street Newport Isle of Wight PO30 1JW

32 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Contents of the financial statements for the year ended 31 March 2021

Page Report of the Trustees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 to 35 Report of the Independent Auditors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 to 39 Statement of Financial Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 Balance Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 Cash Flow Statement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 Notes to the Cash Flow Statement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Notes to the Financial Statements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44 to 56 Detailed Statement of Financial Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 to 58

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 33

brainstrust – Report of the trustees for the year ended 31 March 2021

The trustees present their report with the financial statements of the charity for the year ended 31 March 2021 . The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) .

Structure, governance and management

Governing document

The charity is controlled by its governing document, a deed of trust and constitutes an unincorporated charity .

Reference and administrative details

Registered Charity number

1114634

Principal address

4 Yvery Court Castle Road Cowes Isle of Wight PO31 7QG

Trustees

C Baker K Higgs G Bilbo S Warrington B Young P Plaha (appointed 4.3.21)

Auditors

Harrison Black Limited Statutory Auditor Pyle House 136/137 Pyle Street Newport Isle of Wight PO30 1JW brainstrust is also a Scottish Charity, SC044642, regulated by the Scottish Charity Regulator (OSCR) .

Events since the end of the year

Information relating to events since the end of the year is given in the notes to the financial statements .

Trustees’ Responsibility Statement

The trustees are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) .

34 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Report of the trustees for the year ended 31 March 2021

Trustees’ Responsibility Statement – continued

The law applicable to charities in England and Wales, the Charities Act 2011, Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charity for that period . In preparing those financial statements, the trustees are required to

l select suitable accounting policies and then apply them consistently;

• l observe the methods and principles in the Charity SORP;

• l make judgements and estimates that are reasonable and prudent;

• l state whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;

• l prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business .

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed . They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities .

Approved by order of the board of trustees on 28 July 2021 and signed on its behalf by:

C Baker – Trustee

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 35

Report of the Independent Auditors to the trustees of brainstrust

Opinion

We have audited the financial statements of brainstrust (the ‘charity’) for the year ended 31 March 2021 which comprise the Statement of Financial Activities, the Balance Sheet, the Cash Flow Statement and notes to the financial statements, including a summary of significant accounting policies . The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) .

In our opinion the financial statements:

• l give a true and fair view of the state of the charity’s affairs as at 31 March 2021 and of its incoming resources and application of resources, for the year then ended;

• l have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and

• l have been prepared in accordance with the requirements of the Charities Act 2011

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law . Our responsibilities under those standards are further described in the Auditors’ responsibilities for the audit of the financial statements section of our report . We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements . We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion .

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate .

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue .

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report .

There continues to be global uncertainty as a result of the Covid -19 pandemic . The charity have taken measures to ensure the impact of this is limited and whilst there remains difficulties in generating fundraising income, the charity have more than compensated this with additional income in other areas, government support and the reduction in operating costs . The charity has performed well in the year and therefore the going concern basis is considered appropriate .

36 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Report of the Independent Auditors to the trustees of brainstrust

Other information

The trustees are responsible for the other information . The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon .

Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon .

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated . If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves . If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact . We have nothing to report in this regard .

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion:

• l the information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or

• l sufficient accounting records have not been kept; or

• l the financial statements are not in agreement with the accounting records and returns; or

• l we have not received all the information and explanations we require for our audit .

Responsibilities of trustees

As explained more fully in the Trustees’ Responsibilities Statement, the trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error .

In preparing the financial statements, the trustees are responsible for assessing the charity’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charity or to cease operations, or have no realistic alternative but to do so .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 37

Report of the Independent Auditors to the trustees of brainstrust

Our responsibilities for the audit of the financial statements

We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder .

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion . Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists . Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements .

Irregularities, including fraud, are instances of non-compliance with laws and regulations . We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud . The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

As outlined above, our objective is to give reasonable assurance that the financial statements are free from material misstatements and irregularities . Whilst not a guarantee that such instances will be detected, our risk based approach, using systematic testing methods, judgement, communication with management, professional scepticism, observation of controls and systems, and audit experience/ knowledge, allows us to be satisfied that our procedures are highly capable of detecting irregularities, including fraud .

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at www .frc .org .uk/auditorsresponsibilities . This description forms part of our Report of the Independent Auditors .

38 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Report of the Independent Auditors to the trustees of brainstrust

Use of our report

This report is made solely to the charity’s trustees, as a body, in accordance with Section 144 of the Charities Act 2011 and regulations made under Section 154 of that Act and under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 . Our audit work has been undertaken so that we might state to the charity’s trustees those matters we are required to state to them in an auditors’ report and for no other purpose . To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity’s trustees as a body, for our audit work, for this report, or for the opinions we have formed .

Harrison Black Limited Statutory Auditor Eligible to act as an auditor in terms of Section 1212 of the Companies Act 2006 Pyle House 136/137 Pyle Street Newport Isle of Wight PO30 1JW

Date: 18 October 2021

Note:

The maintenance and integrity of the Brainstrust website is the responsibility of the trustees; the work carried out by the auditors does not involve consideration of these matters and, accordingly, the auditors accept no responsibility for any changes that may have occurred to the financial statements since they were initially presented on the website .

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 39

brainstrust 31 March 2021 – Statement of financial activities for the year ended

Notes INCOME AND ENDOWMENTS FROM Donations and legacies 2 Other trading activities 3 Investment income 4 Other income Total EXPENDITURE ON Raising funds 5 Charitable activities 6 Charity activities Other Total NET INCOME/(EXPENDITURE) RECONCILIATION OF FUNDS Total funds brought forward TOTAL FUNDS CARRIED FORWARD	Unrestricted fund £)	Restricted funds £)	2021 Total funds £) 509,004) 164,950) 40) 67,096) 741,090) 38,707) 472,095) 469) 511,271) 229,819) 185,655) 415,474)	2020 Total funds £ 341,589 265,012 154 –
	509,004)	–)
	119,731)	45,219)
	40)	–)
	67,096)	–)
	695,871)	45,219)		606,755 65,945 557,645 –
	38,708)	(1)
	467,739)	4,356)
	469)	–)
	506,916)	4,355)		623,590
	188,955)	40,864)		(16,835) 202,490
	78,782)	106,873)
	267,737)	147,737)		185,655

The notes form part of these financial statements

40 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Balance sheet 31 March 2021

Notes FIXED ASSETS Tangible assets 11 CURRENT ASSETS Debtors 12 Cash at bank CREDITORS Amounts falling due within one year 13 NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES CREDITORS Amounts falling due after more than one year 14 NET ASSETS FUNDS 17 Unrestricted funds Restricted funds TOTAL FUNDS	Unrestricted fund £)	Restricted funds £)	2021 Total funds £) 2,030) 25,388) 465,184) 490,572) (35,461) 455,111) 457,141) (41,667) 415,474) 267,737) 147,737) 415,474)	2020 Total funds £ 4,059 27,456 174,231
	2,030)	–)
	25,388)	–)
	317,447)	147,737)
	342,835)	147,737)		201,687 (20,091)
	(35,461)	–)
	307,374)	147,737)		181,596
				185,655 –
	309,404)	147,737)
	(41,667)	–
	267,737)	147,737)		185,655
				78,782 106,873
				185,655

The financial statements were approved by the Board of Trustees and authorised for issue on 28 July 2021 and were signed on its behalf by:

C Baker – Trustee

The notes form part of these financial statements

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 41

brainstrust 31 March 2021 – Cash flow statement for the year ended

Notes Cash fows from operating activities Cash generated from operations 1 Interest paid Net cash provided by/(used in) operating activities Cash fows from investing activities Interest received Net cash provided by investing activities Cash fows from fnancing activities New loans in year Net cash provided by fnancing activities Change in cash and cash equivalents in the reporting period Cash and cash equivalents at the beginning of the reporting period Cash and cash equivalents at the end of the reporting period	2021 £) 241,382) (469) 240,913) 40) 40) 50,000) 50,000) 290,953) 174,231) 465,184)	2020 £) (34,603) –)
		(34,603)
		154)
		154)
		–)
		–)
		(34,449) 208,680)
		174,231)

The notes form part of these financial statements

42 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust 31 March 2021 – Notes to the cash flow statement for the year ended

1. Reconciliation of net income/(expenditure) to net cash flow from operating activities

Net income/(expenditure) for the reporting period (as per the Statement of Financial Activities) Adjustments for: Depreciation charges Interest received Interest paid Decrease in debtors Increase/(decrease) in creditors Net cash provided by/(used in) operations	2021 £) 229,819) 2,029) (40) 469) 2,068) 7,037) 241,382)	2020 £) (16,835) 2,029) (154) –) 14,825) (34,468)
		(34,603)

2. Analysis of changes in net funds

Net cash Cash at bank Debt Debts falling due within1year Debts falling due after1year Total	At1.4.20 £) 174,231) 174,231) –) –) –) 174,231)	Cash fow £) 290,953) 290,953) (8,333) (41,667) (50,000) 240,953)	At 31.3.21 £) 465,184)
			465,184)
			(8,333) (41,667)
			(50,000)
			415,184)

The notes form part of these financial statements

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 43

brainstrust – Notes to the financial statements for the year ended 31 March 2021

1. Accounting policies

Basis of preparing the financial statements

102, have been The financial statements of the charity, which is a public benefit entity under FRS prepared in accordance with the Charities SORP (FRS 102) ‘Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)’, Financial Reporting Standard 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland’ and the Charities Act 2011 . The financial statements have been prepared under the historical cost convention .

Income

All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably .

Donations are recognised when the charity has been notified in writing of both the amount and settlement date . In the event that a donation is subject to conditions that require a level of performance before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the control of the charity and it is probable that those conditions will be fulfilled in the reporting period .

Grant income is recognised when received . In the event that a grant is subject to conditions that require a level of performance before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the control of the charity and it is probable that those conditions will be fulfilled in the reporting period .

Legacy gifts are recognised on a case by case basis following the granting of probate when the administrator/executor for the estate has communicated in writing both the amount and settlement date . In the event that the gift is in the form of an asset, recognition is subject to the value of the gift being reliably measurable with a degree of reasonable accuracy and the title to the asset having been transferred to the charity .

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the bank .

Expenditure

Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably . Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category . Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources .

Tangible fixed assets

Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life .

-25% on cost Fixtures and fittings

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

44

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

1. Accounting policies – continued

Taxation

The charity is exempt from tax on its charitable activities .

Fund accounting

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees .

Restricted funds can only be used for particular restricted purposes within the objects of the charity . Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes .

Further explanation of the nature and purpose of each fund is included in the notes to the financial statements .

2. Donations and legacies

Donations Grants from awarding entities Corporate grants and donations Gift aid tax recovered Legacies	2021 £) 72,702) 358,669) 42,196) 33,437) 2,000) 509,004)	2020 £) 36,802) 223,452) 50,733) 30,602) –)
		341,589)

3. Other trading activities

Other trading activities
Fundraising events Sale of ‘brainstrust’ items Sponsored activities Schools and colleges Activities of partner groups	2021 £) 46,241) 11,013) 62,477) –) 45,219) 164,950)	2020 £) 79,088) 8,063) 134,903) 3,188) 39,770)
		265,012)

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 45

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

4. Investment income

Deposit account interest 5. Raising funds Raising donations and legacies Fundraising fees Promotional expenses Other trading activities Trading costs and purchases Event costs Sponsored activities costs Aggregate amounts	2021 £) 40) 2021 £) 6,933) 19,311) 26,244) 2021 £) 8,093) 2,073) 2,297) 12,463) 38,707)	2020 £) 154)
		2020 £) 6,245) 25,903)
		32,148)
		2020 £) 4,280) 13,185) 16,332)
		33,797)
		65,945)

continued...

46 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

6. Charitable activities costs

Charity activities

	Support
Direct	costs (see
Costs	note7)	Totals
£)	£)	£)
459,526)	12,569)	472,095)

7. Support costs

Other resources expended Charity activities	Governance costs £) 469) 12,569)
	13,038)

8. Trustees’ remuneration and benefits

There were no trustees’ remuneration or other benefits for the year ended 31 March 2021 nor for the year ended 31 March 2020 .

Trustees’ expenses

There were no trustees’ expenses paid for the year ended 31 March 2021 nor for the year ended 31 March 2020

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 47

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

9. Staff costs

Total gross salaries, benefits in kind and employers national insurance costs for the year ending 31st March 2021 were £370,904 (2020 – £405,958) .

The average monthly number of employees during the year was as follows:

Fundraising Charitable Activities Governance Other	2021) 3) 8) 1) 1) 13)	2020) 3) 8) 1) 1)
		13)

No employees received emoluments in excess of £60,000

10 . Comparatives for the statement of financial activities

INCOME AND ENDOWMENTS FROM Donations and legacies Other trading activities Investment income Total EXPENDITURE ON Raising funds Charitable activities Charity activities Total NET INCOME/(EXPENDITURE) Transfers between funds	Unrestricted fund £) 304,607) 225,242) 154) 530,003) 64,773) 518,977) 583,750) (53,747) 23,894)	Restricted funds £) 36,982) 39,770) –) 76,752) 1,172) 38,668) 39,840) 36,912) (23,894)	Total funds £) 341,589) 265,012) 154)
			606,755) 65,945) 557,645)
			623,590)
			(16,835) –)

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

48

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

10 . Comparatives for the statement of financial activities – continued

Net movement in funds RECONCILIATION OF FUNDS Total funds brought forward TOTAL FUNDS CARRIED FORWARD 11. Tangible fxed assets COST At1April2020and31March2021 DEPRECIATION At1April2020 Charge for year At31March2021 NET BOOK VALUE At31March2021 At31March2020	Unrestricted fund £) (29,853) 108,635) 78,782) Fixtures and fttings £) 1,494) 1,494) –) 1,494) –) –)	Restricted funds £) 13,018) 93,855) 106,873) Website £) 8,118) 4,059) 2,029) 6,088) 2,030) 4,059)	Total funds £)
			(16,835) 202,490)
			185,655)
			Totals £) 9,612)
			5,553) 2,029)
			7,582)
			2,030)
			4,059)

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 49

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

12. Debtors: amounts falling due within one year Trade debtors Other debtors Prepayments 13. Creditors: amounts falling due within one year Trade creditors Other creditors 14. Creditors: amounts falling due after more than one year Other creditors 15. Loans An analysis of the maturity of loans is given below: Amounts falling due within one year on demand: Other loans Amounts falling due between two and fve years: Other loans –1–5years Amounts falling due in more than fve years: Repayable by instalments: Other loans more5yrs instal	2021 £) 1,078) 6,176) 18,134) 25,388) 2021 £) 12,741) 22,720) 35,461) 2021 £) 41,667) 2021 £) 8,333) 33,333) 8,334)	2020 £) 500) 1,800) 25,156)
		27,456)
		2020 £) 6,532) 13,559)
		20,091)
		2020 £) –)
		2020 £) –)
		–)
		–)

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

50

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

16. Leasing agreements

Minimum lease payments under non-cancellable operating leases fall due as follows:

Within one year Between one and fve years	2021 £) 24,081) 13,990) 38,071)	2020 £) 24,081) 37,972)
		62,053)

17. Movement in funds

Movement in funds
Unrestricted funds General fund Restricted funds Fund A Fund E Fund H Fund I TOTAL FUNDS	At1.4.20 £) 78,782) 677) 75,180) 31,016) –) 106,873) 185,655)	Net movement in funds £) 188,955) –) 1,715) (985) 40,134) 40,864) 229,819)	At 31.3.21 £) 267,737) 677) 76,895) 30,031) 40,134)
			147,737)
			415,474)

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 51

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

17. Movement in funds – continued

Net movement in funds, included in the above are as follows:

Unrestricted funds General fund Restricted funds Fund E Fund H Fund I TOTAL FUNDS Comparatives for movement in funds At1.4.19 £) Unrestricted funds General fund 108,635) Restricted funds Big Lottery Fund Grant 1,283) Fund A 16,313) Fund B 4,575) Fund C 721) Fund D 4) Fund E 70,818) Fund F 140) Fund G 1) Fund H –) 93,855) TOTAL FUNDS 202,490)	Incoming resources £) 695,871) 5,070) 15) 40,134) 45,219) 741,090) Net movement in funds £) (53,747) (1,283) 2,815) 2) –) –) 4,362) –) –) 31,016) 36,912) (16,835)	Resources expended £) (506,916) (3,355) (1,000) –) (4,355) (511,271) Transfers between funds £) 23,894) –) (18,451) (4,577) (721) (4) –) (140) (1) –) (23,894) –)	Movement in funds £) 188,955) 1,715) (985) 40,134)
			40,864)
			229,819)
			At 31.3.20 £) 78,782) –) 677) –) –) –) 75,180) –) –) 31,016)
			106,873)
			185,655)

continued...

52 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

17. Movement in funds – continued

Comparative net movement in funds, included in the above are as follows:

Unrestricted funds General fund Restricted funds Big Lottery Fund Grant Fund A Fund B Fund C Fund E Fund H TOTAL FUNDS	Incoming resources £) 530,003) 36,982) 2,815) 1) 1) 5,937) 31,016) 76,752) 606,755)	Resources expended £) (583,750) (38,265) –) 1) (1) (1,575) –) (39,840) (623,590)	Movement in funds £) (53,747) (1,283) 2,815) 2) –) 4,362) 31,016)
			36,912)
			(16,835)

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 53

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

17. Movement in funds – continued

A current year 12 months and prior year 12 months combined position is as follows:

Unrestricted funds General fund Restricted funds Big Lottery Fund Grant Fund A Fund B Fund C Fund D Fund E Fund F Fund G Fund H Fund I TOTAL FUNDS	At1.4.19 £) 108,635) 1,283) 16,313) 4,575) 721) 4) 70,818) 140) 1) –) –) 93,855) 202,490)	Net movement in funds £) 135,208) (1,283) 2,815) 2) –) –) 6,077) –) –) 30,031) 40,134) 77,776) 212,984)	Transfers between funds £) 23,894) –) (18,451) (4,577) (721) (4) –) (140) (1) –) –) (23,894) –)	At 31.3.21 £) 267,737) –) 677) –) –) –) 76,895) –) –) 30,031) 40,134)
				147,737)
				415,474)

continued...

54 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

17. Movement in funds – continued

A current year 12 months and prior year 12 months combined net movement in funds, included in the above are as follows:

Unrestricted funds General fund Restricted funds Big Lottery Fund Grant Fund A Fund B Fund C Fund E Fund H Fund I TOTAL FUNDS	Incoming resources £) 1,225,874) 36,982) 2,815) 1) 1) 11,007) 31,031) 40,134) 121,971) 1,347,845)	Resources expended £) (1,090,666) (38,265) –) 1) (1) (4,930) (1,000) –) (44,195) (1,134,861)	Movement in funds £) 135,208) (1,283) 2,815) 2) –) 6,077) 30,031) 40,134)
			77,776)
			212,984)

NATURE AND PURPOSE OF FUNDS

General Fund

The ‘free reserves’ after allowing for all restricted funds .

Restricted Funds

Big Lottery Fund Grant

This fund has been set up for the project of high impact coaching for the brain tumour community . The grant awarded by the Big Lottery Fund will support volunteers, employees, recruitment, running expenses, training, travel, equipment, consultancy and overheads .

Other Restricted Funds

All other restricted funds have been created through fundraising or donations for the benefit of individual brain tumour patients . The charity uses the funds for direct treatment or to support research relating to the patients needs .

continued...

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 55

brainstrust – Notes to the financial statements for the year ended 31 March 2021 – continued

18. Related party disclosures

During the year the charity purchased services from Fitton Holman Creative Limited totalling £15,795 (2020 – £11,745) . The company is directed by one of the co-founder’s sister, Catherine Fitton .

During the year the charity paid the co-founders and management employees of brainstrust , Peter and Helen Bulbeck, £4,400 (2020 – £4,960) for administrative use of their property .

The co-founder’s daughter, Leonora Bulbeck, supplied editorial services during the year to the charity totalling £980 (2020 – £2,310) at a commercial rate .

19. Post balance sheet events

Since the Balance Sheet date, there continues to be global uncertainty regarding the Covid-19 pandemic . The charity have continued to minimise the impact of this, taking measures to gain financial support through government means, maximising charity activity income and reducing 31st March 2021 and costs where possible . The charity’s positive financial result in the year ended the forecast/results since this date indicate that the charity is in a good position to address these challenges going forward .

56 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

brainstrust – Detailed statement of financial activities for the year ended 31 March 2021

INCOME AND ENDOWMENTS Donations and legacies Donations Grants from awarding entities Corporate grants and donations Gift aid tax recovered Legacies Other trading activities Fundraising events Sale of ‘brainstrust’ items Sponsored activities Schools and colleges Activities of partner groups Investment income Deposit account interest Other income Gov grants – Furlough claimed Gov grants – COVID support Total incoming resources EXPENDITURE Raising donations and legacies Fundraising fees Promotional expenses	2021 £) 72,702) 358,669) 42,196) 33,437) 2,000) 509,004) 46,241) 11,013) 62,477) –) 45,219) 164,950) 40) 66,627) 469) 67,096) 741,090) 6,933) 19,311) 26,244)	2020 £) 36,802) 223,452) 50,733) 30,602) –)
		341,589) 79,088) 8,063) 134,903) 3,188) 39,770)
		265,012) 154) –) –)
		–)
		606,755) 6,245) 25,903)
		32,148)

This page does not form part of the statutory financial statements

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 57

brainstrust – Detailed statement of financial activities for the year ended 31 March 2021

Raising donations and legacies Other trading activities Trading costs and purchases Event costs Sponsored activities costs Charitable activities Medical grants and costs Patient support and staffng Salaries Travel Administration Offce rent & rates Depn of website Support costs Governance costs Auditors’ remuneration Insurance Other Bank loan interest Total resources expended Net income/(expenditure)	2021 £) 8,093) 2,073) 2,297) 12,463) 600) 269,348) 135,244) (238) 24,537) 28,006) 2,029) 459,526) 3,198) 1,970) 7,401) 469) 13,038) 511,271) 229,819)	2020 £) 4,280) 13,185) 16,332)
		33,797) 3,645) 300,614) 153,208) 30,092) 26,401) 30,325) 2,029)
		546,314) 2,960) 1,895) 6,476) –)
		11,331)
		623,590)
		(16,835)

This page does not form part of the statutory financial statements

58 brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021

Reference and administrative details

Helping you

Talk to our team 24/7 on 01983 292 405, or email hello@brainstrust .org .uk .

Helping us

Make a donation at www .brainstrust .org .uk/donate, or call us on 01983 292 405 during office hours .

Registration

brainstrust is a registered charitable trust . Registered with the Charity Commission for 1114634 England and Wales as Charity No . . Registered with the Office of the Scottish 044642 Charity Regulator as Charity No . SC .

Registered address

brainstrust

4 Yvery Court Castle Road Cowes Isle of Wight PO31 7QG www .brainstrust .org .uk www .braintumourhub .org .uk

Regional office (North of England)

brainstrust C19–21 Joseph’s Well Hannover Lane Westgate Leeds LS3 1AB

Declaration

The trustees declare that they have approved the trustees’ report above . Signed on behalf of the charity’s trustees .

Signature: Full name: Chris Baker Position: Chair of Board of Trustees Date: 28 July 2021

brainstrust trustees’ annual report and accounts: 1 April 2020 to 31 March 2021 59

brainstrust is a registered charitable trust – Registered with the Charity Commission 1114634 for England and Wales as Charity No . . Registered with the Office of the Scottish 044642. Charity Regulator as Charity No . SC

© brainstrust 2021