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2022-03-31-accounts

‘I was told that I had a golf-ball-sized brain tumour in my left frontal lobe. I had also just found out that I was pregnant with Gracie (now six), and I had a nine-month-old baby. After my first operation, I couldn’t walk up the stairs, or leave the house. It’s been a long road to recovery, with lasting challenges that include anxiety and extreme fatigue. I was terrified that I wouldn’t be able to look after my children. I have had to work hard to get to where I am today, but I found brainstrust – their support has been vital. I have also been able to give something back to the community, by walking two marathons in two days with Charlotte and Mel, and raising over £5,000 to help others on this journey.’ Sarah

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

1 April 2021 – 31 March 2022

Contents

Our challenge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Chief executive’s introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Why we are here and what we do . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Our.strategy:.First,.we.are.people. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 How.we.got.here. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 The.experts.we.asked.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

What implementing this strategy looks like: achievements and performance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Our.support.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 How.we.have.helped.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 From.the.team.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 The.impact.we’re.having. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Our.involvement.in.research.–.PRIME.one.year.on. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Your.support.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Financial review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Structure, governance, leadership and management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Leadership.at. brainstrust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Senior.staff.contacts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 The. brainstrust .team.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 Trustees. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Collaborations,.networks.and.advisers.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Patient-focused.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Clinically.focused.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Public.Health.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Charities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Organisational.partnerships.and.collaborations.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Report of the Trustees and Audited Financial Statements for the year ended 31st March 2022 for brainstrust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Report.of.the.Trustees. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Report.of.the.Independent.Auditors.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29–30 Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Balance.Sheet.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Cash.Flow.Statement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Notes.to.the.Cash.Flow.Statement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Notes.to.the.Financial.Statements.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32–37 Detailed.Statement.of.Financial.Activities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37–38

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

2

Our challenge

‘I have had to learn to live with the uncertainty and accept my life is different now … If you are waiting for treatment or lucky enough to be given a choice of treatments, my advice would be to find out all you can about the options, know there is support from brainstrust to help you feel okay about what is ahead, remember to breathe and that you are not alone.’

‘I’m still suffering with tiredness and fatigue, and other people who have been through the same have said this can last months and maybe even years, so I guess this could just be a new way of life that I have to get used to. I’m taking anti-convulsant medication, which I will continue with for at least a year to prevent seizures, which up to now I have not suffered with pre- or post-op. I’m still waiting to hear back from the DVLA regarding my driving licence, but my consultant did say I couldn’t drive for 12 months, so I’m following that advice until I hear differently. You don’t realise how much this impacts you until it happens.’

Kay.has.recently.had.surgery.to.remove.a.large.meningioma She.is. working.hard.on.recovery.and.coming.to.terms.with.her.new.normal .

Lin.is.living.with.an. astrocytoma.and.has.to.make. complex.decisions.about.her. treatment,.which.is.fraught. with.risk .

‘ It was shocking to be told there is no cure. At just 68 years of age, it took away the retirement my dad and his beloved partner, Kath, should have been enjoying. He could no longer drive. His car was his pride and joy.

Each scan showed the tumour was stable – and so it stayed for over three years. The treatment had certainly done its job in giving us more time together. However, his mobility got progressively worse. A stick was replaced by a walking frame, and eventually, he needed someone to be with him by his frame, as coordinating his foot movements on the most affected side became very difficult. His balance was badly affected, and due to the location of the tumour, his eyesight got steadily worse, such that he found it hard to read even large print and deal with different levels of light. But he was still with us.’

Ian.cared.for.his.father,.who.died.after.living.with.a.glioblastoma.diagnosis.for.four.years .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 3

‘As a result of my brain tumour, I have single-sided hearing loss, tinnitus, fatigue, balance issues, dizziness and nausea. All of this makes everyday living a huge effort, and I have had to relearn how to live my life. It now requires a lot of planning, pacing and resting.

My first contact with brainstrust was when I got in touch to request a brain box. This is an amazing box packed with lots of useful information for anyone diagnosed with a brain tumour, and it is posted to your home free of charge. My next step was to join some of the online workshops and Meetup groups that brainstrust organises. I was really nervous at first, but I found it incredibly helpful to connect with others going through the same or a similar experience to myself. I have also received invaluable coaching from Jodie, my regional support specialist.’

Helen.is.51.and.married.with.two.boys,.aged.21.and.15 She.lives.in. Staffordshire Her.experience.of.life.with.a.brain.tumour.has.shown. that.it.affects.the.whole.family .

Over 80,000 people are living with a brain tumour in the UK. Only 12 % of adults survive beyond five years following a diagnosis. Brain tumours reduce life expectancy by an average of 27 years, and they kill more children than any other cancer, yet treatment for a brain tumour is brutal and harmful. It hasn’t changed in 40 years.

Our.brains.are.incredible.–.they. make.us.who.we.are Your.brain. sparks.the.love,.the.joy.and. everything.else.that.you.feel It’s.the. most.complex.organ.in.the.human. body.–.it.is.the.supercomputer. that.creates.everything.that. The.brain.is. defines.humanity also.incredibly.delicate,.soft.and. intricately.balanced .

This.makes.it.susceptible.to.harm .

The.impact.of.brain.tumours. is.under-reported,.support.and. research.under-funded,.and.the. true.impact.of.the.disease.underacknowledged.and.misunderstood .

When.you.hear.the.words.‘you.have. a.brain.tumour’,.you.face.both.a. potential.cancer.diagnosis.and.also. the.prospect.of.progressive.and.

debilitating.neurological.disease You.are.afraid,.you.are.alone,.you. are.confused,.and.your.life.changes. dramatically.in.an.instant .

Today,. brainstrust .is.here.to.help. everyone.live.their.best.possible. life.with.a.brain.tumour.in.the. face.of.these.stark.facts We.help. people.thrive.and.have.their.best. possible.day We.are.also.here.for. tomorrow We.hope.for.a.world.in. the.future.where.brain.tumours. have.little.impact But.we.know.that. hope.is.not.a.strategy We.support. clinical.research.and.work.with.our. community.of.experts.to.improve. investment.and.build.capacity. so.that.harm.is.reduced,.care.is. improved.in.hospital.and.at.home,. and.people.are.more.confident.and. able.to.take.control Only.then.can. life.with.a.brain.tumour.be.fulfilling. and.enjoyable,.and.people.who.have. heard.the.words.‘you.have.a.brain. tumour’.are.living.the.lives.they. want,.because.they.are.people.first. and.patients.second .

This is our challenge.

4 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

Chief executive’s introduction

The headwinds for us all still blow with the rolling uncertainties of a lingering pandemic, political turmoil, a rising cost of living and a devastating war in Europe. Yet in our work at brainstrust , we find progress, solace, focus and hope. Our clear strategy, our strong community and our single-minded focus on helping people thrive following a brain tumour diagnosis provide focus and invigoration for our team and for the incredible brain tumour community.

has.been.a.massive.setback.for.the. brain.tumour.community.during. the.pandemic,.but.now.we.are. confident.that.the.tide.is.turning .

We.know.that.when.our.community. thrives,.so.does. brainstrust ,.and.the. stronger.we.are,.the.more.people. we.can.help.–.a.virtuous.circle Our. sustained.or.increasing.impact.in. the.face.of.continuing.growth.is. testament.to.this,.and.full.credit.to. our.small.team.for.powering.on .

Over.the.last.year,.we.have. worked.hard.to.build.resilience. and.capacity.at. brainstrust following.the.existential.shock.of. the.Covid-19.pandemic We.have. strengthened.our.finances.to. help.us.through.the.significant. and.material.uncertainties.that. exist,.and.we.are.in.the.process. of.scaling.and.strengthening.our. team.–.a.vital.step.in.strengthening. our.organisation.in.the.face.of. unprecedented.and.sustained. demand.for.our.help .

of.accredited.resources,.and.they. participate.in.our.thriving.calendar. of.workshops.and.events This.is. an.increase.of.77%.on.last.year’s. workload,.and.we.do.this.with.a. small.but.dedicated.and.skilled. team .

But.we.reserve.a.special.thank-you,. for.you .

Nearly.everyone.we.help.tells.us. that.they.wish.they’d.found.us. sooner.on.their.journey.with.a. brain.tumour We.hear.this,.and.we. are.working.hard.to.reach.more. people.at.diagnosis Being.able.to. meet.with.the.clinical.community. again,.face.to.face,.is.helping.here We.meet.to.share.our.work.and. collaborate.on.referral.pathways. and.improving.care Not.being.able. to.access.information.in.hospital.

You.are.the.community.that.inspires. us You.energise.us,.you.educate. us,.and.you.keep.us.focused You. also.generate.the.vital.funds.and. awareness.that.fuel.our.mission. and.our.progress.–.thank.you .

We.now.welcome.over.100.people. each.month.to.our.support And. these.people.are.staying.with. us They.receive.coaching.and. counselling,.they.access.our.library.

None.of.us.is.as.smart.as.all.of.us,. and.it.is.your.belief.in.us.–.your. belief.in.our.mission.and.your.belief. in.our.vision.that.everybody.who. hears.the.words.‘you.have.a.brain.

tumour’.can.live.their.best.possible. life.with. brainstrust ’s.help.–.that. drives.us This.is.because.with.us. you.are.a.person.first.and.a.patient. second .

We.thrive.in.a.world.where.we.are. a.person.before.we.are.seen.as.a. patient We.thrive.where.we.get.to. do.the.things.that.people.want.to. do.as.opposed.to.those.things.that. patients.have.to.do .

First,.we.are.people In.our.support,. in.our.research,.in.our.campaigning. and.in.our.fundraising,.that’s.our. vision,.and.it’s.the.mission.you.are. powering .

Will Jones ,.

Chief.Executive,. brainstrust

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 5

Why we are here and what we do

Our strategy: First, we are people

In.April.2019,.we.launched.our. current.strategy Thirteen.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,.the.journey.is.confusing,. 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 They.are.addressed.at.home,.where. help.is.hard.to.find .

How we got here

Our.direction.has.been.set.in. consultation.with.our.community We.‘asked.the.experts’.what.they. needed.in.order.to.understand.what. matters.most .

We.heard:

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6 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022
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Our.current.strategy.has.been. co-created.with.our.community. and.delivered.with.its.support This. strategy.is.helping.us.to.achieve.our. mission.–.we.are.here.for.a.world.in. which.people.with.a.brain.tumour. are.involved,.resourced,.supported,. confident.and.connected They.are. living.the.lives.they.want,.because. they.are.people.first.and.patients. second .

The experts we asked

The.conclusions.and.decisions. reached.in.the.development.of.our. strategy.result.from.conversations. and.day-to-day.meetings.and. experiences.over.a.six-month.period. with.the.following.stakeholders:

Our goal

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

To make this happen, we aim to:

help people overcome fear

help people to engage with their challenges and care

eliminate isolation

improve knowledge and understanding

through our work in the following areas:

coaching and support building communities information and education regional insight and relevance

clinical engagement, development and network building

engaging people in research

which is only possible with:

effective fundraising efficient marketing and promotion

administrative support

good governance

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 7

Our support

‘It has been a challenging yet rewarding year for us. We have struggled with capacity after a significant uplift in activity, which has doubled since Covid-19 restrictions ended. Our team has risen to the challenge, but we are not sure how sustainable this is. Alongside making sure we are as efficient as we can be, we have worked hard to build resilience during the period so that we can scale capacity as we move ahead on our mission.

We are looking forward to expanding our support to build our impact, reach more people and work more sustainably. We have the strategy and structures in place to deliver and scale our work. It’s an exciting period ahead for brainstrust and the team.’

Helen Bulbeck ,.

Co-Founder.and.Director. of.Services,. brainstrust

What implementing this strategy looks like: achievements and performance

8 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

How we have helped

Direct support for people with a brain tumour

l Between.1.April.2021.and.

31.March.2022,. 2,339 people contacted our team of support specialists for help .by.phone,. webchat,.video.call.or.email This.is.over.1,000.more.(an.85%. increase).from.the.previous. year,.when 1,264.accessed.our. help.in.these.ways .

l 825 people were new to

l 404 brain boxes were sent

to people who needed them ,. double.the.number.of.the. previous.year.(203) .

Counselling.is.very.hard.to.access. quickly.through.NHS.channels,.with.

waiting.lists.extending.to.months People.can.be.referred,.but.with.an. appointment.date.that.is.beyond. their.prognosis brainstrust ’s.rapidaccess.counselling.service.alleviates. this.pressure.and.enables.people.to. access.counselling.quickly.through. our.network.of.private.counsellors All.are.qualified.practitioners,.and. have.had.additional.training.on. the.needs.of.the.brain.tumour. community .

proved.to.be.the. most popular and the most useful .in.terms.of. number.of.people.reached.and. positive.feedback .

on.our.website. helped them feel more resourced, more confident or more in control

Online support and information

Events

We hosted 134 events (webinars,. Meetups.and.workshops),.a.31%. increase.compared.to.the.102.held. the.previous.year .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 9

From the team

‘During the year, we saw a growth in demand for quick, accessible information. We adapted our information

programme of work to meet this demand and expanded our library of Know Hows significantly. These met the changing needs that people told us they had. Topics included finance and welfare benefits, how to bring structure to your day, how to find a new normal, knowing what to ask at diagnosis and how to find trusted information.’

Jodie Eveleigh ,.

Support.Specialist,.Midlands,. and.Information.Lead

‘We made sure that our events programme remained relevant as we navigated our way through and beyond

pandemic restrictions. These often varied between regions and nations, and people told us their appetite for risk was different, depending on their circumstances. We adopted a flexible, hybrid approach with events running online and offline. This enabled us to support more people, with a more diverse range of topics, while maintaining or improving impact.

Carol Cochrane ,.

Support.Specialist,.Scotland,. and.Events.Lead

‘We have been travelling less. This has made it harder to connect with some groups, including clinicians.

However, we have been able to use the time available to develop deeper, more impactful coaching relationships with people who are in crisis or who need more in-depth and ongoing support. We have spent a lot more time on the phone and honing our skills using new modes of communication.’

Helen Bulbeck ,.

brainstrust .Co-Founder.and. Director.of.Services

‘We offer both rapidaccess coaching and counselling. We work with the person to identify their needs so that any intervention is personalised for

them. People living with a brain tumour often come to brainstrust with a direct ask for counselling. We have no context for them, no understanding of what has brought them to us, and we do not know whether counselling is an appropriate intervention for them. With careful questioning and by supporting the person to develop their understanding of the differences between counselling and coaching, more often than not, coaching will be the preferred intervention.

Both interventions are transformative – we are delighted to be able to offer both, freely, as part of our extensive support offer. In addition to the six counsellors that deliver our service, we have been very pleased to add a play therapist to the network.’

Molly Hughes ,.

Support.Specialist,. London.and.the.South-East

10 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

The impact we’re having

‘Financial measures and numbers to do with ‘people reached’ or ‘people helped’ are important but shouldn’t be considered in isolation. When looking at performance in the charity sector, we must look at the true impact our organisations are having. And by ‘impact’, we don’t just mean reach (counting people); we also mean the change we have driven. Charity is in the incredible position of existing to improve society, or put simply, to improve lives. We need to look closely at the lives that we’re changing and report back on what that change looks like. We must also use our understanding of impact to acknowledge where we need to go further or faster.’

Will Jones ,.

Chief.Executive,.

brainstrust

understanding.impact Progress. trackers.are.completed.and. monitored.collaboratively.with. our.beneficiaries The.process.isn’t. unobtrusive,.but.it.is.helpful In. completing.a.progress.tracker,.or. multiple.progress.trackers,.we.help. people.to.establish.where.the.focus. of.our.support.needs.to.be.to.help. them.move.forward To.complete. a.progress.tracker,.patients.and. caregivers.provide.a.score.of.how. they.are.feeling.on.a.scale.of.1.to. 5.for.each.of.our.indicators They. complete.multiple.progress.trackers. on.their.journey.with. brainstrust ,. and.this.paints.a.picture.of.their. progress .

‘Thank you so much for being here. I feel more confident and not alone with you at the end of an email.’ Patient

Understanding.the.impact.we. are.having.is.vital.to.all.of.us.at. brainstrust We.have.worked.hard.to. instil.this.principle.in.our.principles. and.processes A.genuine.interest.to. understand.and.report.on.people’s. progress.sits.at.the.very.centre. of.our.work We.track.progress. against.six.indicators These.have. been.defined.as.being.important. to.quality.of.life.by.our.community. of.patients.and.their.caregivers In. turn,.these.indicators.support.the. four.priorities.in.our.strategy These. six.indicators.are:

We.learn.how.people.are.doing. against.these.indicators.through. the.use.of.our.bespoke.progress. tracker.tool This.gives.us.a.simple,. flexible.and.human.approach.to.

‘You truly are a ray of light and the support we need at this time as my father and I feel very much alone in caring for my mother.’ Caregiver

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 11

Fig 1: brainstrus t beneficiary-reported outcomes before and after engaging with our services (178 respondents from the year in review)

Our impact

On.average.across.all.six.indicators,. we.have.helped.people.improve. their.well-being.by.almost.18% The. average.initial.score.was.2.87/5,.and. the.average.latest.score.was.3.75/5 This.is.despite.facing.a.progressive,. life-limiting,.life-changing.or. terminal.diagnosis .

----- Start of picture text -----
Less.alone
Engaged.with. Part.of.a.
clinical.care community
Resourced On.top.
of.things
..Initial
..Latest Supported
----- End of picture text -----

People.see.the.biggest.

improvements.in.feeling.supported. and.feeling.part.of.a.community,. with.an.increase.of.0.94/5 and. 1.03/5.respectively.as.compared.to. their.initial.scores .

Fig 2: brainstrust beneficiary outcomes – overview of cohort’s progress by indicator (178 respondents from the year in review)

----- Start of picture text -----
Less.alone
Part.of.a.
community
On.top.of.things
Supported
Resourced
Engaged.with.
clinical.care
0 20 40 60 80 100 120 140 160 178
Decreased....... ..Same....... ..Increased Beneficiaries
----- End of picture text -----

What we have learned from this year’s impact data

For.the.year.in.review,.we.have. noticed.that.people.are.contacting. us.with.a.higher.initial.score.than. average.across.all.indicators The. average.initial.score.for.this.period. is.3.3/5 This.is.higher.than.our. historical.average.of.2.87/5 This. may.mean.that.people.are.getting. to.us.later.on.their.journey,.when. they.are.more.confident.and.have. a.better.understanding.of.their. complex.pathway While.we.are. still.having.a.positive.impact.and. improving.well-being.across.all.six. indicators,.we.have.work.to.do.to. ensure.those.who.would.benefit. from.our.support.are.able.to.access. us.when.they.need.it.most This. reinforces.the.need.for.strong. clinical.engagement.and.making. sure. brainstrust .is.accessible,. available.and.a.known.option.for. all.patients.at.every.point.of.their. pathway .

This.higher.starting.point.can.also. be.attributed.to.Covid-19.having. a.lesser.effect.on.people’s.lives. this.year.when.compared.to.the. previous.year.–.people.are.more.in.

12 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

like This.investment.will.enable. us.to.offer.dedicated,.accessible. regional.support.in.new.areas.for. those.who.need.it.most,.when.they. need.it.most .

control.of.their.circumstances,.and. clinical.pathways.are.less.disrupted .

We.see.a.smaller.distance.travelled. when.people.are.in.a.better. place.when.they.reach.out.to.us,. but.despite.this,.we.still.have.a. significant.positive.impact.on. well-being.for.people.who.are.in.a. desperate.situation We.know.that. our.greatest.impact.is.in.helping. people.to.feel.part.of.a.community .

Meet Luke

Luke.was.diagnosed.with.a.lowgrade.brain.tumour When.we. first.started.talking.in.March,.he. struggled.with.anxiety,.panic.and. avoidance We.had.regular.coaching. calls During.our.dialogue,.I.sent.him. links.for.our.Know.Hows.on.driving,. mindfulness,.scanxiety.and.how.to. live.with.uncertainty,.as.well.as.our. information.about.acceptance .

This.consistency.in.distance.travelled. year.on.year.affirms.our.planning We.know.that.we.can.be.even.more. effective As.we.build.capacity.in. the.year.ahead,.we.will.be.able.to. provide.additional.and.more.focused. support.in.regions.where.we.are.not. currently.as.proactive.as.we.would.

We.talked.about.how.hypnotherapy. may.help.him.to.learn.techniques.

to.recentre.when.he.is.most. overwhelmed.or.anxious At.first.he. was.slightly.dubious.but.thought.he. would.give.it.a.try He.now.attends. most.of.the.weekly.resets.and.says. that.they.have.been.so.helpful. for.him He.has.now.attended.the. Brighton.Meetup.and.the.tea.and.a. wee.blether,.virtual.brew.and.lowgrade.Meetups .

Luke.has.completely.transformed. in.the.time.I.have.known.him He. is.now.a.lot.more.confident.and. assured.in.himself We.no.longer. need.our.monthly.phone.checkins,.but.I.do.email.to.see.how.he’s. doing.every.two.months,.as.he.has. now.moved.from.shared.care.to. supported.self-care.in.our.triage. system .

----- Start of picture text -----
Less.alone
Engaged.with. Part.of.a.
clinical.care community
Resourced On.top.
of.things
29th.March.2022
2nd.August.2022 Supported
----- End of picture text -----

We.reflected.together.recently.on. his.progress.tracker.changes Luke. tells.us.that.he.is.feeling:

During.this.exercise,.Luke.said,. ‘Thank you very much for this. I appreciate you taking time to help and update me. Looks like I’m doing much better. I feel like I am, with thanks to you and brainstrust .’

Molly Hughes ,.

brainstrust .Support.Specialist,. London.and.the.South-East

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 13

Our involvement in research – PRIME one year on

In.2021,.we.created.the.Patient. Research.Involvement.Movement. (PRIME).to.provide.the.help.needed. to.bridge.the.gap.between.the. clinical.community.and.patients. and.caregivers The.aim.of.this.work. is.to.improve.the.quality.of.clinical. brain.tumour.research.and.its. design .

Since.inception,.PRIME.has.grown. rapidly,.achieving.a.great.deal.in. the.clinical.research.landscape We.have.recruited.50.research. advocates,.who.lend.their.insights. to.researchers,.helping.to.shape.the. trials.and.studies.that.will.hopefully. improve.care.for.future.patients We. have.also.trained.seven.research. partners.in.how.to.deliver.top-level. patient.and.public.involvement,.and. we.have.signed.over.400.people. up.to.our.weekly.research.updates,. helping.them.become.more. knowledgeable.about.the.field .

The.studies.we’ve.supported. include.developing.core.outcome. sets.to.better.identify.patient.

needs,.altering.standard.care.by. introducing.new,.cutting-edge. technologies,.and.looking.at. how.we.can.more.efficiently.get. treatments.out.of.the.lab.and.to.the. patients,.among.many.others These. studies.could.ultimately.improve. the.quality.of.life.for.those.living. with.a.brain.tumour.today.and.in. the.future .

Looking.forward,.we.will.continue. to.improve.the.quality.of.patient. and.public.involvement.in.clinical. research We.will.do.this.by:

We.are.working.in.partnership.with. the.charity.Brain.Tumour.Research. to.grow.this.work .

14 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

Your support

In.2021,.our.supporters.raised. £952,203.to.fund. brainstrust ’s. mission This.income.remains.from. a.diversified.mix.of.traditional. charity.fundraising.activity Our. funding.comes.from:

We.were.grateful.to.secure. significant.support.from.statutory. and.philanthropic.partners,. which.helped.us.to.survive.an. unprecedented.year.during.the. pandemic We.are.now.working.to.

(2020–21:.£741,000),.£346,000 related.to.restricted.income.funds The.net.surplus.for.the.year.was. £289,000.(2020–21:.£230,000),.of. which.£283,000.related.to.restricted. income.funds .

strengthen.those.relationships.as. part.of.a.more.diverse.fundraising. portfolio.that.reduces.risk .

With.all.public.fundraising. cancelled.at.the.outset.of.the. Covid-19.pandemic,.we.have.since. worked.hard.to.reignite.supporter. fundraising We.have.been. delighted.to.see.activity.and.income. from.community.fundraising. channels.build.on.last.year This. focus.is.bringing.our.work.closer,. once.more,.to.the.community.we. are.here.to.serve .

‘Our supporters continue to inspire us with their ideas for fundraising activities, and it’s rewarding to be able to take a tailored and individualised approach to the way we help to realise their ambitions and passions.’

Julia Smith ,.

Of.the.gross.income.generated. in.2021–2022,.totalling.£952,203

Fundraising.Manager,. brainstrust

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 15

Our income 2021–22

----- Start of picture text -----
Government.Covid-19.pandemic.
Investments:. £26 support:. £6,083
Personal.donations:.
£57,896
Grants.from.other.
Restricted.income.
charities:. £175,831
fundraising.–.partner.
groups:. £326,012
Total.income:.
£952,203 Corporate.support:.
£53,576
Gift.Aid.recovered:. £50,551
Trading:. £12,472
Community.fundraising.including.
team. brainstrust .marathons. contributions.from.restricted.income.
and.challenges: fundraising:. £95,417
£174,339
----- End of picture text -----

Our expenditure 2021–22

----- Start of picture text -----
Governance:. £14,963
Generating.restricted.income:. £23,782
Generating.unrestricted.income:.
£66,402
Charitable.activities.
restricted.expenditure:.
£19,596
Total.expenditure:. Charitable.activities.
unrestricted.expenditure:.
£663,431 £538,688
----- End of picture text -----

Here.are.just.some.of. brainstrust ’s. fundraising.highlights.for.the.year .

Jack Jarvis rows the Atlantic, sets a new world record and raises funds and awareness for brainstrust

On.3.December.2021,.Jack.Jarvis. set.off.from.the.south.coast.of. Portugal.to.attempt.a.world-first. row He.aimed.to.row.across.the. Atlantic,.completely.solo,.on.a.route. never.before.attempted He.did. this.to.raise.money.for. brainstrust in.memory.of.his.grandad After. 111.days.at.sea,.with.4,630.nautical. miles.covered,.Jack.reached.land.in.

Miami.on.24.March.2022,.raising. £70,000.and.helping.us.to.reach. millions.of.people.with.our.mission .

16 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

Run, Row, Ride – 30 miles, 30 days, your way

Every.day,.30.people.are.diagnosed. with.a.brain.tumour.in.the.UK For. these.30.people,.the.road.ahead.is. scary.and.uncertain By.taking.on. Run,.Row,.Ride,.and.raising.£200,. supporters.can.make.sure.that. people.who.are.newly.diagnosed. with.a.brain.tumour.don’t.have.to. face.the.journey.alone .

With.the.Covid-19.pandemic.forcing. mass-participation.and.challenge. events.to.be.cancelled,.we.had.to. amplify.creative.ways.to.fundraise. individually.or.in.small.groups The. Run,.Row,.Ride.event.was.new.in. 2019.and.provided.our.supporters. with.the.perfect.way.to.join.our. mission.and.fundraise.their.own. way.in.the.absence.of.massparticipation.events The.event.has. raised.£44,600.in.three.years.and. has.proved.to.be.an.inspiring.and. accessible.way.for.people.with.a. brain.tumour.and.their.loved.ones. to.support.our.vital.work,.and.get. active.during.a.period.fraught.with. restrictions .

together.to.experience.routes.that. took.in.sections.of.the.South.West. Coast.Path,.the.Cleveland.Way.and. the.Fife.Coastal.Path .

Follow the Seagulls

With.the.easing.of.restrictions.and. a.desire.in.the.community.for.a. challenge.that.matches.the.scale. of.passion.for.our.work,.Follow. the.Seagulls.returned.in.2021 Postponed.events.were.finally.able. to.take.place.in.September .

To.date,.this.amazing.event.has. raised.over.£208,000,.with.£49,000 raised.at.Follow.the.Seagulls.2021,. but.it.is.more.than.a.fundraising. trek.–.the.weekend.never.fails.to. bring.people.from.the.community. together,.to.galvanise.around.a. challenge.that.is.tackled.at.a.pace. comfortable.enough.to.share. stories,.perspectives.and.advice.on. life.with.a.brain.tumour All.who. take.part.in.Follow.the.Seagulls.do. so.because.the.challenge.matches. the.scale.of.their.passion.for.helping. people.with.a.brain.tumour.get.the. vital.support.they.need .

Walkers.gathered.in.Whitby,.on. the.Isle.of.Wight,.in.Fife,.and.in. Dartmouth.to.trek.50.miles.in.two. days.to.support.the.brain.tumour. community First.walked.in.2013 on.the.Isle.of.Wight,.Follow.the. Seagulls.has.grown.steadily.into.a. four-location.event,.but.it’s.no.walk. in.the.park .

Our.heroes.all.put.in.some.serious. training.hours.before.joining.

The London Marathon

The.London.Marathon.took.place.on. Sunday.3.October,.with.the.virtual. London.Marathon.staged.on.the. same.day .

We.welcomed.eight.runners.to.team. brainstrust ,.seven.who.ran.in.London. and.one,.Alice,.who.completed.her. marathon.virtually .

Alice.chose.to.complete.her. marathon.with.a.route.that.started. in.Polstead,.near.Colchester,.and. ended.in.Pin.Mill,.on.the.River.Orwell,. Ipswich.–.she.actually.covered.28 miles,.going.1.8.miles.further.than.the. usual.marathon.distance,.thanks.to.a. few.wrong.turns Alice.was.joined.by. her.sister-in-law.and.even.received.a. donation.along.the.route.from.two. well-wishers .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 17

Our.runners.in.London.included.our. head.of.support,.Jane,.who.is.on. her.way.to.complete.the.inspiring. challenge.of.running.12.marathons. in.12.months,.with.the.London. Marathon.her.third .

Also.running.in.London.was. Adam,.who.had.set.himself.the. epic.challenge.of.completing.15 marathons.in.15.days.to.mark. 15.years.of. brainstrust Adam’s.

15th.marathon.was.the.London. Marathon,.and.he.says.it.was.his. favourite.of.them.all,.and.not.just. because.it.was.the.last .

Adam.and.Jane.were.joined. in.London.by.team. brainstrust members.Carol,.Ethan,.Spencer,. Michelle.and.Charlie Spencer. credited.the.support.he.received. from.his.family.for.helping. him.along.the.way,.and.Charlie. commented,.‘It.was.a.pleasure.to. run.for. brainstrust ,.a.charity.that. provided.so.much.support.for.my. family .’

For.Carol.and.Ethan,.the.London. Ethan. Marathon.was.their.first.ever reflected:.‘I.am.very.proud.and. happy.to.raise.a.good.sum.of.money. for.an.amazing.cause.in. brainstrust ,. who.were.there.for.my.family.in.the. time.we.needed.it.most This.is.the. least.I.could.do.–.and.I.hope.that.the. charity.continues.to.help.others.like. our.family Brain.cancer.doesn’t.get. enough.attention,.in.our.opinion It’s. time.we.raised.awareness!’

Our.London.Marathon.team.raised. £14,000.for.our.work.–.to.you.all,. thank.you .

Thank.you.to.The.National.Lottery. Community.Fund.and.players.of.The. National.Lottery The.second.year.of. our.Reaching.Communities.grant. has.helped.us.to.support.more. people.in.the.Midlands.and.southern. England.with.our.high-impact. coaching .

Support from trusts and foundations

Thank.you.to.our.trust.and. foundation.partners.for.caring. about.people.who.are.living.with. a.brain.tumour.diagnosis Your. support.has.played.a.meaningful. role.in.helping. brainstrust .to.survive. and.thrive Your.compassion.has. helped.us.to.make.a.difference .

Thank.you.to.new.funding.partner. the.Moondance.Foundation.for. helping.us.to.grow.our.service.in. Wales .

We.are.grateful.to.The.Rank. Foundation.for.its.continued. support We.value.our.membership. of.RankNet.and.the.opportunities.it. brings.for.learning.and.sharing .

We.are.grateful.to.The.Wyseliot.Rose. Charitable.Trust.for.its.dedication. and.kindness.over.many.years .

18 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

Financial review

The.Trust’s.published.statutory. accounts.for.the.year.ended.31 March.2022.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.2022,.as.required.by.the. SORP.for.UK.charities.published.by. the.Charity.Commission This.report. comments.on.the.main.points. contained.in.the.accounts .

In.summary,.gross.income.generated. in.2021–2022.was.£952K.(2020–21:. £741K),.of.which.£346K.related.to. restricted.income.funds The.net. surplus.for.the.year.was.£289K. (2020–21:.£230K),.of.which.£283K. related.to.restricted.income.funds .

Through.adaptive.planning.and. changes.to.our.patient.and.caregiver. offers,. brainstrust .has.weathered.the. pandemic.in.good.financial.health .

As.reviewed.elsewhere.in.the. Trustees’.Annual.Report,. brainstrust ’s.

charitable.impact.has.been. significantly.increased.due.to. measures.as.disparate.as.taking. elements.of.our.support.online. (thus.increasing.our.reach.and. effectiveness.while.increasing.cost. only.within.budget).and.focusing. to.an.even.greater.extent.on.that. which.our.research.tells.us.is. the.type.of.support.that.brings. real.benefit.to.our.stakeholders. Therefore,.in.a. and.beneficiaries controlled.way,.overall.expenditure. in.2021–22,.at.£663K,.has.naturally. increased.year.on.year,.alongside. a.higher.level.of.activity,.from.the. lockdown.year.of.2020–21.(£511K) .

The.Trust’s.gross.income.for. 2021–22,.at.£952K,.was,.as.noted. above,.a.significant.increase.on. the.£741K.raised.in.2020–21 Most. community.fundraising.was.severely. impacted.during.2020–21,.and. while.2021–22.has.not.yet.seen.a. return.to.a.‘normal’.twelve.months,. our.supporters,.through.grants,.

donations.and,.in.many.cases,.the. hard.physical.graft.of.traditional. fundraising.through,.for.example,. sponsored.and.testing.walks,. marathons.and,.in.one.extreme.case,. rowing.the.Atlantic.solo.and.by.our. own.increasing.use.of.technology,. our.income.streams.have.covered. our.costs.and.allowed.for.a. significant.growth.in.our.reserves .

Most.of.the.Trust’s.income,.both. general.and.restricted,.is.applied. to.supporting.patients.and.their. caregivers.and.families,.from.the. point.of.a.brain.cancer.diagnosis Our.support.team.provides.UK-wide. 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. 2022,.the.Trust.had.net.reserves,. including.our.restricted.income. funds,.of.£704K.(2021:.£415K),.which.

included.net.unrestricted.reserves. of.£274K.(2021:.£268K).and.net. restricted.reserves.of.£430K.(2021:. £148K) The.unrestricted.surplus.for. the.year.in.review.has.been.added.to. our.general.charitable.funds .

The.Trust.has.a.long-standing.policy. of.holding.unrestricted.reserves. to.cover.four.months.of.defined. core.costs As.at.31.March.2022,. unrestricted.reserves.were.sufficient. to.cover.just.over.six.months.of.core. costs,.the.excess.providing.a.useful. cushion.as.the.UK,.and.especially. the.charity.sector,.continues.to. operate.in.a.very.unusual.and. unpredictable.environment .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 19

‘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 highperformance 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 .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 Dayto-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 .

20

Leadership at brainstrust

brainstrust .has.a.stable,.experienced. and.committed.leadership.team. who.are.aligned.in.delivering.our. mission.and.who.are.the.strongest. advocates.of.our.vision.and.values Day.to.day,.the.leadership.team. work.to.promote,.develop.and.instil. purpose,.autonomy.and.mastery. throughout.the.organisation. through.a.‘tight-loose’.approach,. which.is.manifested.in.tightly. defined.objectives.for.each.member. of.the.team,.but.loosely.defined. method This.allows.people.to. work.the.way.that.suits.them. best.to.achieve.the.right.goals.for. brainstrust .and.our.beneficiaries .

This.leadership.team.and.trustees. have.a.clear.mandate.to:

l Set an example .–.It.is.important. to.demonstrate.our.values.in. everything.we.do We.set.high. standards.of.behaviour.and. inspire.colleagues,.supporters. and.beneficiaries.to.do.the. same We.demonstrate.fairness,. integrity.and.resilience,.and.we. build.trust.with.our.actions .

l Look after people .–.At.

brainstrust ,.we.promote.the.wellbeing.of.individuals,.teams.and. communities We.encourage.a. supportive.culture.and.inclusive. working.arrangements We. prioritise.one-to-one.time.with. people.to.listen.and.understand. their.needs We.support.and. defend.colleagues.in.difficult. situations We.identify.and.deal. with.poor.performance.and.bad. behaviour .

l Take ownership .–.We.welcome. responsibility.and.accountability We’re.proactive,.pick.up.things. that.need.doing.without.being. asked.and.push.to.finish.the.job. in.hand We’re.the.first.to.admit. mistakes,.apologise.when.wrong. and.learn.for.next.time .

l Provide clarity .–.We.must.

communicate.clearly.and. concisely.through.the.right. channel We.question.any. decisions,.goals.or.explanations. that.are.vague.or.ambiguous,. and.we.work.to.clarify.them We’re.open,.honest.and. straightforward.in.what.we. say.and.write And.we.provide.

specific,.understandable.and. useful.feedback .

l Make good decisions .–.We.

use.evidence.and.judgement. to.make.good.decisions We. know.that.timely.decisions. are.important,.so.we.don’t. procrastinate.or.fudge We. commit.to.collective.decisions,. particularly.when.we.originally. disagreed We.consult.broadly,. seek.out.contrary.opinions.and. listen.to.quieter.voices We. make.sure.we.can.explain.our. decisions,.with.context,.rationale. and.evidence .

l Point the way .–.We.share.an. inspiring.vision.for.the.future.of. the.charity.and.everyone’s.part. in.it In.our.work,.we.make.sure. that.colleagues.understand.the. outcomes.we.want.to.achieve. and.the.value.that.they.will. create .

career.aspirations,.whether.at. brainstrust .or.elsewhere And. we.give.people.opportunity. and.responsibility.at.the.right. pace.for.them We.continually. improve. brainstrust ’s.capability. and.the.effectiveness.and. We. efficiency.of.our.delivery try.out.new.approaches.and. technologies.and.give.others.the. time.and.space.to.do.the.same .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 21

Senior staff contacts

Will 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

----- Start of picture text -----
team Board
of Trustees
Gillian Bilbo Kevin Higgs Chris Baker Puneet Plaha Stephen Warrington
Trustee Trustee Chair.of.Trustees Trustee Trustee
Senior
Leadership
Team
Will Jones
CEO
----- End of picture text -----

The brainstrust team

----- Start of picture text -----
Advisory Helen Bulbeck Kathy Springate Peter Bulbeck Regulatory
and Supported Director.of.Services. Head.of.Finance Trust.Administrator Bodies
Parties and.Policy
The Fundraising
Patients Regulator
Caregivers The Charities
Commission
NCRI
NIHR Support and Finance Governance Reach and Fundraising OSCR
Public Health Impact and HR Effectiveness Statutory Auditor
England HMRC
NHS Four Nations ICO
JLA
Patient Engagement Support Specialist Payroll and Audit HR Consultant Designer Fundraising
NICE Officer – PRIME London. (Contracted.third. (Agency) (Freelance) Manager
NCRAS and.South-East party) Trusts.and.
Foundations
Cochrane
Support Specialist Support Specialist Communications Fundraising
Scotland Wales Manager Manager
Support Specialist Support Specialist Charity Resources Senior Fundraising
Midlands Northern.England Officer Officer
Support Specialist
Central.Southern.
England
----- End of picture text -----

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

22

In.recent.years,. brainstrust .has. matured.rapidly We.have.increased. confidence.in.our.work,.our. abilities.and.our.impact We.are. more.focused.than.ever.before.on. our.purpose.and.the.needs.of.our. beneficiaries We.are.proud.that.we. have.catalysed.a.new.ecosystem. in.the.brain.tumour.charity.and. advocacy.landscape.that.is.focused. on.improving.life.for.people.with.a. brain.tumour .

Our.professional.and.highly.trained. team.now.supports.people.across. the.UK,.and.these.people.can.access. impactful,.accredited.resources We. are.a.resilient.organisation.that.has. transitioned.well.from.being.a.‘large. small’.operation.to.a.‘small.big’. charity.with.a.scalable,.professional. and.resilient.structure .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 23

Trustees

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:

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.16th.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 .

Our board of trustees

Chris Baker

Chair.of.Trustees

Chris.is.EMEA.managing.director.at. a.leading.global.software.company. and.has.over.20.years’.experience. driving.growth.at.some.of.the. highest-profile.companies.in.the. world,.including.Microsoft.and. Salesforce Chris.has.been.a.trustee.

for.nearly.ten.years.and.the.chair.of. trustees.at. brainstrust .for.five.years .

Kevin Higgs

Trustee

Kevin.is.a.financial.adviser.and. has.been.a.trustee.for.thirteen. 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.he.has.been.a.trustee.for.five. years Stephen’s.teenage.son.was. diagnosed.with.a.brain.tumour.and. underwent.successful.surgery .

Gillian Bilbo

Trustee

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

Puneet Plaha

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.has. been.a.consultant.neuro-oncology. surgeon.lead.for.the.Oxford.brain. tumour.MDT.and.neuro-oncology. lead.for.Thames.Valley.since.2012 Puneet.joined. brainstrust ’s.board.of. trustees.in.March.2021

brainstrust ’s.trustees.have.had.

regard.to.the.guidance.issued.by. the.Charity.Commission.on.public. benefit .

24 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

Collaborations, networks and advisers

Our.ethos.is.that.‘none.of.us. is.as.smart.as.all.of.us’ Indeed,. meaningful.collaboration.and. co-creation.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. five.themes:

Patient-focused

These.partnerships.include. clinical.engagement.with.the.35 neuroscience.and.neurosurgical. centres.and.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.Cochrane We.are.very.proud. of.our.clinical.network,.which. has.been.pivotal.in.the.success.of. our.webinar.programme.and.the. growth.of.our.clinical.research. activity.under.the.banner.of.PRIME .

This.community’s.involvement.in. our.educational.events.has.been. transformative.for.our.beneficiaries We.have.built.a.community.of. over.20.clinical.experts,.who.have. selflessly.given.up.their.time.and. 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.continues.to.grow,.and. we.are.so.grateful.for.the.valuable. and.transformative.expertise.so. generously.gifted.by.this.network .

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.return.of.services.following.the. Covid-19.pandemic This.work.has. included.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 Furthermore,.by.using.data.from. the.National.Cancer.Registration. and.Analysis.Service.to.reassure. the.community.that.waiting.times. and.urgent.referrals.are.returning. to.normal,.our.work.with.Public. Health.has.enabled.us.to.keep. our.community.updated.in.a. meaningful.and.relevant.way .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

25

people.with.brain.cancer.through. our.role.on.the.Steering.Group.of. the.Children.and.Young.People. with.Cancer.Coalition;.we.work. closely.with.Cancer.Research.UK. on.matters.relating.to.brain.cancer. and.clinical.research;.and.we.work. in.partnership.with.charity.Brain. Tumour.Research.on.a.variety. of.projects,.including.our.PRIME. initiative,.and.on.activity.to.inform. UK.governments.on.the.importance. of.addressing.brain.tumours.at.the. highest.levels.possible .

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,. and.we.have.worked.hard.this. year.to.continue.to.build.these. relationships .

We.are.actively.involved.in.the. Cancer52.network.of.charities;. we.represent.children.and.young.

Notably,.we.have.enjoyed.our. continued.support.of.the.Tessa. Jowell.Brain.Cancer.Mission. (TJBCM) brainstrust .provides. financial.support.to.the.mission’s. work,.and.our.chief.executive,. Will.Jones,.shares.our.experiences,. insights.and.the.voices.of.our. communities.through.his.role.on. the.Joint.Strategy.Board.of.the. TJBCM .

Organisational partnerships and collaborations

Our.team.also.maintains.a. broad.portfolio.of.strategic. and.commercial.relationships. outside.the.health.and.charity. sectors These.relationships.with. companies.and.individuals.enhance. our.capabilities,.capacity.and. expertise,.and.they.all.contribute. meaningfully.to.our.mission.and. our.impact We.would.like.to. express.our.specific.appreciation.to:

Anaplan

Baker.McKenzie

Charisma.Charity.Recruitment Class.Networks Eric.Callister

Google.UK Harrison.Black Irene.Clark J.Pullan.&.Sons Louise.Baker McQueenie.Mulholland Nifty.Communications Salesforce Smarter.Not.Harder.(SNH) TechSoup Think.Creative.Consultants.Ltd Thrive Tim.Colman Vicki.Munro

26 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

Registered Charity Number: 1114634

brainstrust – Contents of the Financial Statements for the year ended 31st March 2022

Report.of.the.Trustees.and. Audited.Financial.Statements.for. the.year.ended.31st.March.2022 for. brainstrust

Page 28 Report.of.the.Trustees.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29–30 Report.of.the.Independent.Auditors.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 30 Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Balance.Sheet.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Cash.Flow.Statement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Notes.to.the.Cash.Flow.Statement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32–37 Notes.to.the.Financial.Statements.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37–38 Detailed.Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Harrison.Black.Limited. Statutory.Auditor. Pyle.House. 136/137.Pyle.Street. Newport. Isle.of.Wight. PO30 1JW

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 27

brainstrust – Report of the Trustees for the year ended 31st March 2022

brainstrust – Report of the Trustees for the year ended 31st March 2022

31st.March. The.trustees.present.their.report.with.the.financial.statements.of.the.charity.for.the.year.ended. 2022 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.(resigned.9.11.21). P.Plaha

Auditors

Harrison.Black.Limited. Statutory.Auditor. Pyle.House,.136/137.Pyle.Street. Newport,.Isle.of.Wight. PO30 1JW

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 .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. 20th September 2022 .and.signed.on.its.behalf.by:

C Baker .–.Trustee

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) .

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

28

Report of the Independent Auditors to the trustees of brainstrust

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 31st.March.2022.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.31st.March.2022.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

ln.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.uncertainty.as.a.result.of.the.Covid-19.pandemic.and.other.global.matters The.charity. have.taken.measures.to.ensure.the.impact.of.this.is.limited.and.whilst.there.remain.challenges,.the.charity.has. performed.well.in.the.year.and.therefore.the.going.concern.basis.is.considered.appropriate .

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 2021 – 31 March 2022 29

Report of the Independent Auditors to the trustees of brainstrust

brainstrust – Statement of Financial Activities for the year ended 31st March 2022

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 .

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 .

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. Pyle.House,.136/137.Pyle.Street. Newport,.Isle.of.Wight.PO30.1JW Date:.26th.September.2022

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 .

Notes
INCOME AND ENDOWMENTS FROM
Donationsandlegacies
2
Othertradingactivities
3
Investmentincome
4
Otherincome
Total
EXPENDITURE ON
Raisingfunds
5
Charitable activities
6
Charityactivities
Other
Total
NET INCOME/(EXPENDITURE)
Transfers between funds
17
Net movement in funds
RECONCILIATION OF FUNDS
Total funds brought forward
TOTAL FUNDS CARRIED FORWARD		 Unrestricted)
funds)
£)		 Restricted)
funds)
£)		 2022)
Total)
funds)
£)
337,854)
608,240)
26)
6,083)
952,203)
90,184)
558,284)
14,963)
663,431)
288,772)
–)
288,772)
415,473)
704,245)		 2021
Total
funds
£
509,005
164,950
40
67,096
337,854) –)
262,228) 346,012)
26) –)
6,083) –)
606,191) 346,012) 741,091
38,708
472,096
469
66,402) 23,782)
538,688) 19,596)
14,963) –)
620,053) 43,378) 511,273
229,818
–
(13,862) 302,634)
20,000) (20,000)
6,138) 282,634) 229,818
185,655
267,736) 147,737)
273,874) 430,371) 415,473

The.notes.form.part.of.these.financial.statements

30 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

brainstrust – Cash Flow Statement for the year ended 31st March 2022

brainstrust – Balance Sheet 31st March 2022

Notes
FIXED ASSETS
Tangibleassets
11
CURRENT ASSETS
Debtors
Cashatbank
12
CREDITORS
Amountsfallingduewithin
oneyear
13
NET CURRENT ASSETS
TOTAL ASSETS LESS CURRENT
LIABILITIES
CREDITORS
Amountsfallingdueaftermore
thanoneyear
14
NET ASSETS
FUNDS
Unrestrictedfunds
Restrictedfunds
17
TOTAL FUNDS		 Unrestricted)
fund)
£)		 Restricted)
funds)
£)		 2022)
Total)
funds)
£)
2,824)
39,522)
730,827)
770,349)
(35,655)
734,694)
737,518)
(33,273)
704,245)
273,874)
430,371)
704,245)		 2021
Total
funds
£
2,030
25,388
465,184
2,824) –)
39,522)
300,456)		 –)
430,371)
339,978) 430,371) 490,572
(35,462)
(35,655) –)
304,323) 430,371) 455,110
457,140
(41,667)
307,147) 430,371)
(33,273) –)
273,874) 430,371) 415,473
267,736
147,737
415,473
Notes
Cash fows from operating activities
Cashgeneratedfromoperations
Interestpaid
1
Netcashprovidedbyoperating
activities
Cash fows from investing activities
Purchaseoftangiblefxedassets
Interestreceived
Netcash(usedin)/providedby
investingactivities
Cash fows from fnancing activities
Newloansinyear
Loanrepaymentsinyear
Netcash(usedin)/providedby
fnancingactivities
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		 2022
£
277,073
(818)
276,255
(3,469)
26
(3,443)
–
(7,169)
(7,169)
265,643
465,184
730,827		 2021
£
241,382
(469)
240,913
–
40
40
50,000
–
50,000
290,953
174,231
465,184

The.financial.statements.were.approved.by.the.Board.of.Trustees.and.authorised.for.issue.on. 20.September.2022.and.were.signed.on.its.behalf.by:

C Baker .–.Chair.of.Trustees

The.notes.form.part.of.these.financial.statements

The.notes.form.part.of.these.financial.statements

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 31

brainstrust – Notes to the Cash Flow Statement for the year ended 31st March 2022

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022

1. Reconciliation of net income to net cash flow from operating activities

Net income for the reporting period (as per the Statement
of Financial Activities)
Adjustments for:
Depreciationcharges
Interestreceived
Interestpaid
(Increase)/decreaseindebtors
(Decrease)/increaseincreditors
Net cash provided by operations
Analysis of changes in net funds
At1.4.21
£
Net cash
Cashatbank
465,184
465,184
Debt
Debtsfallingduewithinoneyear
(8,333)
Debtsfallingdueafteroneyear
(41,667)
(50,000)
Total
415,184		 2022
£
288,772
2,675
(26)
818
(14,134)
(1,032)
277,073
Cashfow
£
265,643
265,643
(1,225)
8,394
7,169
272,812		 2021
£
229,818
2,030
(40)
469
2,068
7,037
241,382
At31.3.22
£
730,827
730,827
(9,558)
(33,273)
(42,831)
687,996

2. Analysis of changes in net funds

1. Accounting policies

Basis of preparing the financial statements

The.financial.statements.of.the.charity,.which.is.a.public.benefit.entity.under.FRS.102,.have.been.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

The.notes.form.part.of.these.financial.statements

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 2021 – 31 March 2022

32

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – 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
Grantsfromawardingentities
Corporategrantsanddonations
GiftAidtaxrecovered
Legacies
3.
Other trading activities
Fundraisingevents
Saleof‘brainstrust’items
Sponsoredactivities
Activitiesofpartnergroups		 2022
£
57,896
175,831
53,576
50,551
–
337,854
2022
£
75,417
12,472
174,339
346,012
608,240		 2021
£
72,702
358,670
42,196
33,437
2,000
509,005
2021
£
46,241
11,013
62,477
45,219
164,950

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

4. Investment income

4.
Investment income
Depositaccountinterest
5.
Raising funds
Raising donations and legacies
Fundraisingfees
Promotionalexpenses
Other trading activities
Tradingcostsandpurchases
Eventcosts
Sponsoredactivitiescosts
Aggregateamounts
6.
Charitable activities costs
Charityactivities		 2022
£
26
2022
£
33,129
26,782
59,911
2022
£
7,972
11,433
10,868
30,273
90,184		 2021
£
40
2021
£
6,933
19,311
26,244
2021
£
8,093
2,073
2,298
12,464
38,708
Direct
costs
£
558,284

continued ...

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

33

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

7. Support costs

Support costs
Governance
costs
£
Otherresourcesexpended 14,963

8. Trustees’ remuneration and benefits

There.were.no.trustees’.remuneration.or.other.benefits.for.the.year.ended.31st.March.2022.nor.for.the.year. ended.31st.March.2021

Trustees’ expenses

There.were.no.trustees’.expenses.paid.for.the.year.ended.31st.March.2022.nor.for.the.year.ended. 31st.March.2021

9. Staff costs

Total.gross.salaries,.benefits.in.kind.and.employer’s.National.Insurance.costs.for.the.year.ending.

31st.March.2022.were.£431,130.(2021 – £370,904

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

Fundraising
CharitableActivities
Governance
Other		 2022
4
9
1
1
15		 2021
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
Donationsandlegacies
Othertradingactivities
Investmentincome
Otherincome
Total		 Unrestricted
fund
£
509,004
119,731
40
67,096
695,871		 Restricted
funds
£
1
45,219
–
–
45,220		 Total
funds
£
509,005
164,950
40
67,096
741,091

continued ...

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

10 . Comparatives for the statement of financial activities – continued

EXPENDITURE ON
Raisingfunds
Charitable activities
Charityactivities
Other
Total
NET INCOME
RECONCILIATION OF FUNDS
Total funds brought forward
TOTAL FUNDS CARRIED FORWARD
Tangible fxed assets
COST
At1stApril2021
Additions
At31stMarch2022
DEPRECIATION
At1stApril2021
Chargeforyear
At31stMarch2022
NET BOOK VALUE
At31stMarch2022
At31stMarch2021		 Unrestricted
fund
£
38,708
467,740
469
506,917
188,954
78,782
267,736
Fixturesand
fttings
£
1,494
411
1,905
1,494
8
1,502
403
–		 Restricted
funds
£
–
4,356
–
4,356
40,864
106,873
147,737
Website
£
8,118
3,058
11,176
6,088
2,667
8,755
2,421
2,030		 Total
funds
£
38,708
472,096
469
511,273
229,818
185,655
415,473
Totals
£
9,612
3,469
13,081
7,582
2,675
10,257
2,824
2,030
continued ...

11 . Tangible fixed assets

34 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

12. Debtors: amounts falling due within one year

Tradedebtors
Otherdebtors
Prepayments
Creditors: amounts falling due within one year
Tradecreditors
Othercreditors
Creditors: amounts falling due after more than one year
Othercreditors
Loans
Ananalysisofthematurityofloansisgivenbelow:
Amountsfallingduewithinoneyearondemand:
Otherloans
Amountsfallingduebetweentwoandfveyears:
Otherloans–1–5years
Amountsfallingdueinmorethanfveyears:
Repayablebyinstalments:		 2022
£
(90)
15,499
24,113
39,522
2022
£
12,840
22,815
35,655
2022
£
33,273
2022
£
9,558
33,273
–		 2021
£
1,078
6,176
18,134
25,388
2021
£
12,742
22,720
35,462
2021
£
41,667
2021
£
8,333
33,333
8,334

13. Creditors: amounts falling due within one year

14. Creditors: amounts falling due after more than one year

15. Loans

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

16. Leasing agreements

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

2022 2021
£ £
Withinoneyear
Betweenoneandfveyears		 13,990
–		 24,081
13,990
13,990 38,071

17. Movement in funds

Movement in funds 13,990 38,071
At1.4.21
£
Net
movement
infunds
£
Unrestricted funds
Generalfund
267,736
(13,862)
Restricted funds
FundA
FundE
FundH
FundI
677
76,895
30,031
40,134
33
2,108
(2,997)
303,490
147,737
302,634
TOTAL FUNDS
415,473
288,772
Netmovementinfunds,includedintheaboveareasfollows:
Incoming
resources
£
Unrestricted funds
Generalfund
606,191
Restricted funds
FundA
FundE
FundH
FundI
33
5,069
3
340,907
346,012
TOTALFUNDS
952,203		 Transfers
between
funds
£
20,000
–
–
–
(20,000)
(20,000)
–
Resources
expended
£
(620,053)
–
(2,961)
(3,000)
(37,417)
(43,378)
(663,431)		 At31.3.22
£
273,874
710
79,003
27,034
323,624
430,371
704,245
Movement
infunds
£
(13,862)
33
2,108
(2,997)
303,490
302,634
288,772

continued ...

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 35

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

17. Movement in funds – continued

Comparatives for movement in funds

17. Movement in funds – continued

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

Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
TOTAL FUNDS		 At1.4.20
£
78,782
677
75,180
31,016
–
106,873
185,655		 Net
movement
infunds
£
188,954
–
1,715
(985)
40,134
40,864		 At31.3.21
£
267,736
677
76,895
30,031
40,134
147,737
415,473
Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
TOTAL FUNDS		 At1.4.20
£
78,782
677
75,180
31,016
106,873
185,655		 Net
movement
infunds
£
175,092
33
3,823
(3,982)
343,624
343,498
518,590		 Transfers
between
funds
£
20,000
–
–
–
(20,000)
(20,000)
–		 At31.3.22
£
273,874
710
79,003
27,034
323,624
430,371
229,818 704,245

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

Unrestricted funds
Generalfund
Restricted funds
FundE
FundH
FundI
TOTAL FUNDS		 Incoming
resources
£
695,871
5,071
15
40,134
45,220
741,091		 Resources
expended
£
(506,917)
(3,356)
(1,000)
–
(4,356)
(511,273)		 Movement
infunds
£
188,954
1,715
(985)
40,134
40,864
229,818

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

Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
TOTAL FUNDS
NATURE AND PURPOSE OF FUNDS		 Incoming
resources
£
1,302,062
33
10,140
18
381,041
391,232
1,693,294		 Resources
expended
£
(1,126,970)
–
(6,317)
(4,000)
(37,417)
(47,734)
(1,174,704)		 Movement
infunds
£
175,092
33
3,823
(3,982)
343,624
343,498
518,590

General Fund

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

Restricted Funds

Funds.designated.for.specific.trials.and.treatments .

continued ...

continued ...

36 brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

brainstrust – Notes to the Financial Statements for the year ended 31st March 2022 – continued

17. Movement in funds – continued

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 .

18. Related party disclosures

During.the.year.the.charity.purchased.services.from.Fitton.Holman.Creative.Limited.totalling.£10,462 (2021 – £15,745) 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,.£4,320 (2021 – £4,400).for.administrative.use.of.their.property .

The.co-founder’s.daughter,.Leonora.Bulbeck,.supplied.editorial.services.during.the.year.to.the.charity. totalling.£1,890 (2021 – £980).at.a.commercial.rate .

19. Post Balance Sheet events

Since.the.Balance.Sheet.date,.there.continues.to.be.uncertainty.regarding.the.Covid-19.pandemic.and. other.global.matters The.charity.has.continued.to.minimise.the.impact.of.this.by.maximising.charity. activity.income.and.reducing.costs.where.possible The.charity’s.positive.financial.result.in.the.year.ended. 31st.March.2022.and.the.forecast/results.since.this.date.indicate.that.the.charity.is.in.a.good.position.to. address.these.challenges.going.forward .

brainstrust – Detailed Statement of Financial Activities for the year ended 31st March 2022

INCOME AND ENDOWMENTS
Donations and legacies
Donations
Grantsfromawardingentities
Corporategrantsanddonations
Giftaidtaxrecovered
Legacies
Other trading activities
Fundraisingevents
Saleof‘brainstrust’items
Sponsoredactivities
Activitiesofpartnergroups
Investment income
Depositaccountinterest
Other income
Govgrants–Furloughclaimed
Govgrants–COVIDsupport
Total incoming resources
EXPENDITURE
Raising donations and legacies
Fundraisingfees
Promotionalexpenses
Other trading activities
Tradingcostsandpurchases
Carriedforward		 2022
£
57,896
175,831
53,576
50,551
–
337,854
75,417
12,472
174,339
346,012
608,240
26
6,083
–
6,083
952,203
33,129
26,782
59,911
7,972
7,972		 2021
£
72,702
358,670
42,196
33,437
2,000
509,005
46,241
11,013
62,477
45,219
164,950
40
66,627
469
67,096
741,091
6,933
19,311
26,244
8,093
8,093

This.page.does.not.form.part.of.the.statutory.financial.statements

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022 37

brainstrust – Detailed Statement of Financial Activities for the year ended 31st March 2022

Other trading activities
Broughtforward
Eventcosts
Sponsoredactivitiescosts
Charitable activities
Medicalgrantsandcosts
Patientsupportandstaffng
Salaries
Travel
Administration
Offcerent&rates
Fixturesandfttings
Depreciationofwebsite
Support costs
Governance costs
Auditors’remuneration
Insurance
Other
Bankloaninterest
Totalresourcesexpended
Net income		 2022
£
7,972
11,433
10,868
30,273
3,000
318,242
163,094
8,972
31,803
30,498
9
2,666
558,284
3,000
2,196
8,949
818
14,963
663,431
288,772		 2021
£
8,093
2,073
2,298
12,464
600
269,348
135,244
(238)
24,537
28,006
–
2,030
459,527
3,198
1,970
7,401
469
13,038
511,273
229,818

This.page.does.not.form.part.of.the.statutory.financial.statements

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

38

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Reference and
administrative
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Helping you

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

Helping us

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

Registration

brainstrust .is.a.registered.charitable. trust,.registered.with.the.Charity. Commission.for.England.and.Wales. as.Charity.No 1114634,.registered. with.the.Office.of.the.Scottish. Charity.Regulator.as.Charity.No SC044642

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:. Christopher John Baker Position:. Chair of the Board of Trustees Date:. 20 September 2022

brainstrust trustees’ annual report and accounts: 1 April 2021 – 31 March 2022

39

brainstrust .is.a.registered.charitable.trust.–.registered.with.the.Charity.Commission.for.England.and.Wales. as.Charity.No 1114634,.registered.with.the.Office.of.the.Scottish.Charity.Regulator.as.Charity.No SC044642. ©. brainstrust 2022.