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2023-03-31-accounts

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

1 April 2022 – 31 March 2023

When you become a caregiver, you suddenly have to make decisions about someone’s health and wellbeing that you never thought you’d have to. Suddenly everything falls to you.

Caregiver to a low grade glioma patient

Contents

Our challenge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Strategic report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 3 Letter.from.chair.and.CEO. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . But.we.are.rising.to.this.challenge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Our purpose and our work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 4 Our.strategy:.First,.we.are.people.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 How.we.got.here.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 The.experts.we.asked.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Key achievements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 6 Our.support.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Online.support.and.information.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Thrive.with. brainstrust 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Our impact . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 9 Background.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Methodology.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 The.impact.we’re.having.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Meet.Hannah,.caregiver.for.her.dad.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 PRIME.–.bringing.people.closer.to.research.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 The.story.of.a.trial:.PORTRAIT.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 The.story.of.a.trial:.APPROACH.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Our influence – informing change in the future . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Award.winning.work.that.improves.patient.experience. . . . . . . . . . . . . . . . . Collaborations, networks and advisers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 19 ‘None.of.us.is.as.smart.as.all.of.us’.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Patient-focused.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Clinically.focused.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

19 Public.Health.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Charities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Organisational.partnerships.and.collaborations.. . . . . . . . . . . . . . . . . . . . . . . . . Your support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 22 Thank.you.to.our.community.of.supporters.. . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Thank.you.to.our.trust.and.foundation.supporters.. . . . . . . . . . . . . . . . . . . . . . Financial review 27 .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Our structure, governance, leadership and management . . . . . . . . . . . . . . . . . . 28 28 Our.structure.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 Our.governance. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 Leading.the.way.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Our.board.of.trustees.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . brainstrust 31 .senior.staff.contacts.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Incidents.and.reporting.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Report of the Trustees and Audited Financial Statements for the year ended 31st March 2023 for brainstrust 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Report.of.the.Trustees. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34–35 Report.of.the.Independent.Auditors.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Balance.Sheet.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Cash.Flow.Statement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 Notes.to.the.Cash.Flow.Statement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37– 42 Notes.to.the.Financial.Statements.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Detailed.Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Get in touch 44 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Declaration 44 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 1

Our challenge

‘I struggle with multiple issues – fatigue, physical and mental problems – but I try to focus on healing and the road to recovery.’ Patient

‘What am I not struggling with? I suffer daily symptoms, which range from tinnitus, dizziness, head pressure and pain, which frightens my husband.’ Patient

‘Following on from my father’s diagnosis yesterday myself and my family are in a state of shock, while trying to navigate what lies ahead so as to ensure that my father has the best possible care.’ Caregiver

‘I had to be on the drugs for two years at least, as my tumour was small, but in an area associated with seizures. It devastated me. Everything caught up with me. It was the identity shift that was difficult – I wasn’t prepared for going from a “surgery survivor” to “epileptic”.’ Patient

‘My diagnosis was delivered over the phone by my GP, which was incredibly hard to deal with. The best way to describe my feelings at the time is a mixture of fear paired with an overwhelming sense of confusion. As how could this be happening to me? I had just finished my degree, which I had worked hard for. I was starting a new job that I was excited for at the end of the week, and I had just turned 24 years of age a few weeks prior. It felt like such a cruel twist of fate for this to happen as my life was just coming together how I wanted.’ Patient

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.

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

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

2

Strategic report

Will Jones Chris Baker Chief Executive Chair of Trustees

Letter from chair and CEO

Thank.you.for.taking.an.interest.in.our.mission.and.passion.for.helping. people.with.a.brain.tumour.to.have.the.best.support.available.so.that.they. can.live.their.lives.as.people.first.and.patients.second

Following.a.strong.year.on.all.fronts.in.2021–22,.this.year.has.been.one.of. planned.investment.to.build.capacity We.have.grown.our.team,.expanded. our.collaborative.relationships.and.developed.our.skills.to.meet.demand,. which.has.increased.steadily.each.quarter And.with.this.growth,.we.have. sustained.impact .

While.from.an.organisational.and.governance.perspective,.this.paints.a. picture.of.positive.progress,.we.are.only.too.aware.that.for.those.diagnosed. with.a.brain.tumour,.the.challenges.of.isolation,.fear,.confusion.in.the.face. of.complex.treatment,.lack.of.support.and.poor.clinical.outcomes.are.as. present.as.ever There.are.over.80,000.people.living.with.a.brain.tumour.in. the.UK,.and.we.still.have.much.work.to.do.to.reach.everyone.who.needs.us .

But we are rising to this challenge.

We.are.reaching.more.people.every.day,.with.beneficiary.numbers.growing. over.the.year.at.15%.each.quarter,.and.we.have.grown.our.skills.and.capacity. to.meet.new.needs.in.the.brain.tumour.community Perhaps.the.most. pertinent.of.these.is.the.impact.of.the.cost-of-living.crisis

Working.with.volunteers,.we.have.been.able.to.provide.welfare.and.benefits. support,.which.has.helped.those.that.need.it.secure.£94,760.in.vital.support. over.the.year .

Leaning.into.where.we.know.we.have.the.most.impact,.we.have.formalised. our.intensive.coaching.offer,.in.partnership.with.Thrive.Partners.and.made. possible.thanks.to.our.Rank.Foundation.Golden.Award With.the.funding. from.The.Rank.Foundation,.we.have.been.able.to.pilot.the.Thrive.platform,. bringing.structured.online.coaching.to.the.cancer.care.and.charity.space.for. the.first.time Feedback.and.outcomes.are.good,.with.people.scoring.their. experience.as.10/10,.from.164.completed.sessions Our.expert.coaches.have. been.scored.5/5 .from.these.sessions .

Fundraising.is.an.equally.important.part.of.our.work To.be.able.to.support. everyone.who.needs.us.and.sustain.our.impact,.we.need.to.raise.over.£1 .5m. every.year

Our.diverse.portfolio.of.fundraising.continues.to.sustain.our.work,.with. our.community.as.passionate.as.ever.about.giving.back.and.enabling.us.to. help.others While.at.face.value.not.a.record.year.for.income,.the.period.in. review.carries.a.high.level.of.unrestricted.income,.which.is.vital.in.helping. us.cover.our.core.costs.and.deliver.our.service Funds.raised.over.the.year. total.£691,706 This.has.been.derived.from.a.traditional.mix.of.charity. fundraising.channels The.fourth.quarter.of.the.year.did.bring.a.slowdown. in.community.fundraising.and.trading.activity.as.our.supporters.bore.the. weight.of.the.cost-of-living.crisis .

Looking.to.the.year.ahead,.and.in.the.face.of.a.challenging.social,.economic. and.political.climate,.we.are.planning.to.consolidate.our.expanded.scale. following.this.period.of.investment,.sustain.or.grow.our.impact,.and.inspire. more.people.and.organisations.to.get.behind.our.mission.to.help.people. with.a.brain.tumour.to.live.their.lives.as.people.rather.than.patients

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 3

Our purpose and our work

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.people.living.with.a. brain.tumour.become.less.isolated,.more.in.control,.more.involved.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 .

The “all together, stay calm in a crisis and sort out anything” me has been completely taken off guard. I am so lost. Patient

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,.to.understand.what.matters.most .

We.heard:

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 .

4 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

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:

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 5

Key achievements

Our support

This year we have grown our team to meet increasing demand and build capacity so that we can continue to help more people than ever before with brainstrust ’s unique and impactful support.

Riding the momentum we carried through the pandemic, this year has seen us move forward, with and for our community at pace, and without compromising our impact.

Every day the resourcefulness and resilience of our community inspire and motivate us, and our strategy and structure have enabled us to scale our work across new regions. We hoped that this year would be exciting for brainstrust , for our community and for our team, and it has been. This is not to make light of the devastating challenges faced by the people we are here for, but it is a comment on how we have never felt more confident, single-minded and committed to our mission to make life better for people post-diagnosis.

Helen Bulbeck , Co-Founder and Director of Services

During the year, 3,439 people accessed our help by phone or email, webchat or video call. An increase of 47% on last year (2,339), and 172% on the year before (1,264).

1,306 people accessed our help for the first time during the year. 739 of these people were brain tumour patients. 567 were caregivers or close friends or family members seeking support. This is a 58% increase on last year (825).

I’m having a bad day. I feel very demoralised and very down. Hard with the “simple” day-to-day things and even harder with more difficult days, like today. I find it easier to put things in writing. I can take as much time as I need to explain. I just wouldn’t be able to find the words in a phone call. I am so glad I can turn to you for help. You understand. I don’t feel so alone. I’m starting to feel better now, and calmer.

Brain tumour patient , south-east England

We were able to send 368 brain boxes to people who needed them. This is 34 fewer than last year.

Our volunteer-led welfare and benefits support service helped 41 94,760. people to access financial support worth £ This comprises Personal Independence Payments (PIP), Disability Living Allowance (DLA) and one-off grants from local organisations.

6 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Between 1 April 2022 and 31 March 2023, we provided 372 counselling sessions to 62 people via our network of specially trained and professionally qualified counsellors.

On average, those that have accessed counselling through us have progressed by 0.97 across our impact indicators This represents a 24% improvement.

24%

People.who.accessed.counselling.with. brainstrust .reported.feeling.more. on.top.of.things.and.less.alone.–.where.for.both.indicators.we.enabled. a.29 %.improvement .

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When I found out about brainstrust , it was nice to speak to like-minded people who were in a similar position and stage of a brain tumour diagnosis. They kindly sent out a brainstrust brain box, which meant a lot to me at the time, as I didn’t feel so isolated, as I wasn’t on my own going through this. This must have cost a lot, so I donated – as I still refer to one of the books that was sent to me, it is a very small price to pay. There is a Zoom meeting that I can attend if I want to and speak to other people, where you can vent off frustrations, amongst lots of other things that concern you. I have attended the Liverpool event held recently, which consisted of people working in different fields of brain tumours in the morning session, and in the afternoon we could ask questions amongst other activities held, and I found this INVALUABLE. Long may they continue, as they do a sterling job.

Brain tumour patient , Liverpool

Online support and information

120,668 people came to brainstrust.org.uk for the 9% increase from 9% first time for information during the year, a 110,928 the previous year.

These people accessed 270,716 pages and downloaded 9,384 copies of long-form health information from our website.

During the year, the most popular information has been about diagnosis, brain tumour types, patient stories, end-of-life care and glioblastoma trials and treatments.

Of the 2,469 people who have provided feedback on our information, 2,219 (90%) tell us that what they have read has helped them to feel better resourced and more in control.

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 7

The most highly rated information on our website is our content about end-of-life care, the brain box, anatomy and tumour types and brain tumour symptoms and diagnosis.

Thrive with brainstrust

I found it helpful to lay out all the things I’m feeling overwhelmed about and what I do and don’t have control over and work out the places where I can get more support/information around my treatment and what the next steps are. The exercise of writing things down and categorising those areas was useful and helped get everything out of my head, and I felt supported and heard.

Brain tumour patient , London

During.the.pandemic,.we.accelerated.our.plans.to.make.our.coaching. service.available.online This.work.progressed.at.pace.during.the.year.in. review,.culminating.in.the.launch.of.the.‘Thrive’.coaching.platform

On.this.platform,.people.can.select.a.coach,.book.sessions.and.attend.via. secure.video.call Goals.and.topics.are.set.prior.to.the.call,.and.evaluation. takes.place.within.the.platform

Coaching.via.the.Thrive.platform.gives.users.structure.and.direction.in. the.support.they.receive The.platform.allows.people.to.choose.when.the. sessions.take.place.and.to.set.the. focus This.sets.a.clear.pathway. to.attaining.their.goals As.it.is.a. video.platform,.people.get.to.see. their. brainstrust .support.specialist. during.the.sessions,.so.they.can.feel. as.connected.as.possible.with.their. coaching.journeys .

Feedback.and.outcomes.are.good,.with.people.scoring.their.experience.as. 10/10,.from.164.completed.sessions.on.the.platform Our.expert.coaches. have.been.scored.5/5 .from.these.sessions .

Madi’s story

Madi.has. Madi’s.story.shows.the.significant.impact.this.work.can.have lived.with.brain.tumours.for.nearly.30.years.and.is.a.survivor.of.multiple. surgeries She.recently.came.to. brainstrust .for.support.as.her.third.surgery. approached.and.she.faced.ill-health.retirement.from.a.career.she.had. worked.hard.for.and.loved

Madi.engaged.with.our.coaching.service.through.the.Thrive.platform.and. told.us:.‘There.is.something.about.there.being.a.particular.place.to.go.that. adds.value.to.the.sense.of.belonging.and.community It.also.reminds.me. that.there.are.other. brainstrust .resources,.such.as.the.fatigue.book,.that.I. can.go.back.to The.follow-up.emails.my.coach.sends.me.after.each.session. provide.me.with.an.opportunity.to.respond.in.writing,.as.do.the.feedback. and.booking.forms.on.Thrive Writing.is.a.very.helpful.reflective.tool.for.me. and.helps.me.consolidate.what.I.am.taking.away.from.each.of.the.face-toface.online.sessions The.online.sessions.are.helpful.to.me,.as.I.don’t.need. to.travel.and.can.rest.before.or.after.sessions,.depending.on.my.fatigue .’ Madi.told.us:.‘I.feel.empowered.and.have.the.sense.of.being.held.in.a. kind.of.soft.safety.net The.questions.I’ve.been.asked.and.the.relationship. I’ve.built.with.my.coach.provide.an.inner.voice.to.challenge.some.of. the.less.helpful.thoughts.I.may.have I.have.achieved.a.sense.of.relative. calm.whilst.waiting.for.information.about.my.ill.health,.retirement.and. next.surgery .’

Using.our.progress.tracker.tool.over.the.four-month.period.she.was. engaged.in.online.coaching,.Madi.improved.her.overall.well-being.by.76%. from.an.initial.total.score.of.17.out.of.30.across.all.six.of.our.key.indicators. to.her.most.recent.maximum.total.score.of.30.out.of.30

8 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Our impact

Background

There.are.nine.pillars.that.drive.our.efforts.to.understand.the.impact.of. our.work .

Accountability: .We.are.entrusted.with.resources,.often.donated.by. individuals,.corporations.or.governments Measuring.impact.allows.charities. to.demonstrate.how.effectively.we.are.using.these.resources.to.achieve. our.goals

Resource allocation: .Limited.resources.are.a.common.challenge.for.charities By.measuring.impact,.we.can.identify.which.of.our.efforts.are.delivering.the. most.significant.results This.information.guides.informed.decision-making. on.where.we.allocate.resources.for.maximum.effectiveness .

Improvement: .Regularly.assessing.impact.enables.us.to.identify.areas.for. improvement By.understanding.what.is.working.well.and.what.isn’t,.we. refine.our.strategies,.modify.programmes,.and.enhance.our.approach.to. better.serve.the.people.we.are.here.for .

Learning and adaptation: .The.landscape.in.which.we.operate.changes. rapidly Measuring.impact.helps.us.to.stay.agile.and.responsive.to.evolving. needs When.we.can.track.changes.in.our.beneficiaries’.lives,.we.are.better. equipped.to.adapt.our.work.appropriately.and.with.confidence

Advocacy with evidence: .When.we.are.pushing.for.policy.changes.or. increased.funding,.measuring.impact.provides.tangible.evidence.of.the. outcomes.we.are.achieving,.or.demonstrates.the.gap.that.we.need.to.close

Effective communication: .Sharing.our.impact.data.allows.us.to. communicate.our.achievements.effectively It.makes.our.stories.relatable.

and.understandable,.enabling.us.to.connect.with.a.broader.audience.and. inspire.people.to.join.our.cause .

Engaged supporters: .People.and.institutions.want.to.know.that.their. contributions.are.making.a.difference Impact.measurement.provides. donors.with.a.clear.picture.of.how.their.support.is.creating.positive.change .

Strategic planning: .Impact.data.informs.our.planning We.can.set.more. realistic.and.achievable.goals.when.we.have.a.clear.understanding.of.the. outcomes.we.can.deliver.based.on.past.performance .

A learning culture: .A.focus.on.impact.cultivates.a.culture.of.continuous. learning.and.improvement We.are.more.open.to.experimentation.and. innovation.as.we.seek.out.the.best.possible.ways.to.achieve.our.mission .

Measuring.impact.is.about.maximising.the.effectiveness.of.our.work,. ensuring.that.our.resources.are.used.efficiently.in.generating.positive. change.for.people.with.a.brain.tumour

We.have.worked.hard.over.recent. years.to.create.a.culture.where. impact.is.not.only.at.the.centre.of. our.processes.but.also.a.central.part. of.the.conversations.we.have.with. the.people.who.need.us Tracking. impact.is.mutually.beneficial

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 9

Methodology

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:

l. engagement.with.care.and.condition

l. reduced.isolation

l. engagement.with.communities

l. creating.control

l. feeling.supported l . feeling.resourced .

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

The impact we’re having

People.who.have.come.to.us.for.help.in.the.last.year.have.made.progress. against.our.six.key.impact.indicators

On.average,.people.have.progressed.by.0 .57,.on.a.scale.from.1.to.5 This. equates.to.a.14 .25%.average.increase.in.well-being.across.the.board This.is. even.greater.for.some.indicators .

----- 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 -----

l. We.helped.people.improve.the.most.with.feeling.able.to.navigate.their. clinical.care,.where.we.saw.a. 17 .25%.increase .

l. After.that.we.saw.a. 16 .25%.increase.in.feeling.resourced .

l. An.area.our.focus.should.turn.to.from.here.is.helping.people.to.feel.less. alone,.as.we.saw.our.smallest.increase,.of.10 %,.here .

In.total,.during.this.given.period,.we.had.84.people.complete.their.second. progress.trackers.and.328.people.complete.their.first .

We.have.worked.hard.over.the.year.to.close.the.gap,.ensuring.we.are. collecting.as.many.second.trackers.as.possible.to.get.an.accurate.picture. of.the.impact.of.our.services

10 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

I’ve been feeling really alone since my last consultation as I feel like I’m burdening friends and family by discussing it over and over but at the same time it’s such a huge decision I don’t want to make it on my own.

Numbers.alone.don’t.always.shine.a.light.on.the.powerful.outcomes.that. brainstrust .creates.for.people,.or.the.challenging.circumstances.they.face Over.the.year.we.heard.a.lot.about.the.impact.our.work.is.having.directly. and.unprompted.from.the.people.that.need.us:.

Patient

Beneficiary change 2022–2023

----- Start of picture text -----
Less.alone
Part.of.a.
community
On.top.of.things
Supported
Resourced
Engaged.with.
clinical.care
0 10 20 30 40 50 60 70 80 84
Decreased Same Increased Beneficiaries
----- End of picture text -----

Over.the.year,.we.helped.the.vast.majority.of.people.who.contacted.us.to. sustain.or.improve.well-being.in.the.face.of.progressive.neurological.disease. where,.by.all.clinical.measures,.regression.is.more.than.likely

It is important that we are realistic in our expectations, given the context in which many of the seriously or terminally ill people with whom we work find themselves. For many in this space, maintenance of well-being is an important and ambitious goal, and we are proud to help people achieve this.

Adam Thomson , Patient Involvement Officer and Impact Lead

I am now at the stage where I really want to share all that I have learnt on my brain tumour journey, and give back to the community. With that in mind, it was perfect timing when I bumped into the lovely team from brainstrust at a brain tumour conference I’d been asked to speak at. Combining my coaching qualifications and experience on my brain tumour journey, I can now support others in coming to terms with where they are at, and then help them start to take powerful, positive action to live their best lives possible.

Damon , brainstrust volunteer and brain tumour patient

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 11

Area of impact Beneficiary feedback

Less alone

l That’s the first time I’ve been able to talk with other brain tumour patients in person, and I found it very therapeutic.

Supported l I’m still in shock, but it’s because of all the amazing people in my life, like you, who continue to encourage and support me. Thank you for your ongoing support and encouragement. I am very lucky to have such amazing people around me and wouldn’t be where I am without you, I am sure.

On top of l I found the session very useful. I now feel I am heading in the right direction to be as in control and on top of things as I can be. Mariel put me at ease, as things this was the first online interactive thing I have ever done, and she also teased out the positive things I didn’t realise I was already doing and some issues that we could address at a later date. Thank you for your advice today.

Resourced l The hypnotherapy helps me to focus on my needs, relax, find a calm place in my head. It reminds me that I need to look after myself. The ‘meningioma matters’ sessions give me relevant information and keep me up to date, allowing me to learn from others’ experience as well as providing a support network who ‘get it’ in relation to lived experience. The information on the website has been useful in researching things like radiotherapy. The Facebook site gives me that community again; it’s nice to feel I can occasionally offer understanding or suggestions to others.

Part of a l For the first time, I felt the group really knew what I was feeling. Acoustic neuromas are rare, so I haven’t been able to find people who have been through community similar experiences, and this forum was supportive, friendly and informative. I am so grateful to have the opportunity to learn and share ideas with this group. Looking forward to the next one.

l I have found the online ‘family and friends’ Meetup very helpful and supportive. It has been interesting to connect with other people who are experiencing similar situations but who obviously have different ways of coping. I have found it a very useful platform for exchanging management/coping skills, and it helps me to feel less alone with my situation.

l Reading other people’s stories has really helped me not feel so alone with the life-changing nature of this diagnosis. I’ve learnt to accept the new me, and know that while I’m different to how I was – there are certain situations I now find difficult, and I don’t have as much energy as before – that’s OK. A brain tumour affects different people in different ways. Accepting this, and accepting help from everywhere it’s offered, plus talking about it and telling your story, can really help.

Confident navigating clinical care

12 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Meet Hannah, caregiver for her dad

When.my.dad.got.diagnosed.with.a. grade.IV.glioblastoma.last.year,.our. lives.turned.upside.down My.dad. and.I.have.always.been.close,.and.it. hit.me.really.hard .

brainstrust .sent.us.a.brain.box.as. soon.as.we.got.our.diagnosis,.and. their.resources.really.helped,.but.a. few.months.in,.I.realised.I.needed. extra.support I.reached.out.to.

brainstrust .who.instantly.set.me. up.with.Molly,.one.of.their.coaches Molly.was.amazing,.and.we.spoke.lots. about.my.dad,.all.my.concerns,.and.sometimes.(read:.regularly).the.sessions. just.allowed.me.to.have.a.really.big.(and.much-needed).cry

After.a.couple.of.months,.we.reached.the.decision.that.I.was.ready.to.start. counselling I.was.just.going.back.to.university.after.the.summer,.and.we. decided.that.the.summer.holidays.would.be.a.good.time.to.do.it As.soon. as.I.sent.the.email,.Molly.and. brainstrust .put.me.in.touch.with.a.counsellor,. who.helped.enormously Even.now,.Molly.still.checks.in.occasionally.to.make. sure.I’m.doing.okay.and.to.let.me.know.that.support.is.still.there.if.I.need.it .

Through. brainstrust .coaching.with.Molly.for.many.months,.and.her.helping. me.take.the.steps.for.reaching.out.for.counselling.over.the.summer,.I.felt. like.I.was.able.to.come.to.terms.with.my.dad’s.diagnosis Their.support. means.I.can.enjoy.my.time.with.him,.however.long.that.may.be I.feel.more. able.to.navigate.my.dad’s.ups.and.downs.and.the.harsh.reality.of.what. we.are.dealing.with I.feel.like.I.have.taken.steps.to.come.to.terms.with. everything.now This.has.meant.that.I.can.now.enjoy.the.time.I.have.left. with.my.dad.without.dealing.with.anticipatory.grief.and.guilt .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 13

PRIME – bringing people closer to research

In.2021,.we.created.the.Patient.Research.Involvement.Movement.(PRIME).to. bridge.the.gap.between.the.clinical.community.and.brain.tumour.patients. and.their.caregivers This.work.improves.the.quality.of.clinical.brain.tumour. research.and.its.design .

This.time.last.year,.57.volunteer.research.partners.and.advocates.were. supporting.PRIME.with.top-level.patient.involvement Over.this.year,.we. have.more.than.doubled.this.number,.with.a.combined.total.of.115 individuals.lending.their.insight.and.knowledge.to.clinical.trial.design .

The.PRIME.community.is.expert.by.experience And.this.expertise.has.been. used.to.test.and.design.intervention.tools.to.support.mental.well-being,. influence.studies.that.explore.how.treatment.prior.to.surgery.may.improve. outcomes,.and.provide.guidance.on.how.patients.should.be.stratified.into.a. trial.comparing.photon.and.proton.therapy,.just.to.name.a.few .

At.any.given.time,.PRIME.supports.15.to.30.studies There.is.a.range.of. opportunities.for.the.patient.and.caregiver.community.to.be.involved,. ensuring.that.researchers.working.in.the.field.have.access.to.strong.patient. involvement .

In.the.future,.we.will.continue.to.improve.the.standard.of.patient.and.public. involvement.(PPI).in.clinical.research,.remain.thought-leaders.in.this.space. and.continue.to.grow.our.service We.will.do.this.by:

l. collaborating.with.other.charities,.including.Brain.Tumour.Research l. exploring.new.ways.to.share.our.services.with.clinicians

We.have.continued.to.work.in.partnership.with.the.charity.Brain.Tumour. We.have.also.received. Research.to.grow.this.work.to.mutual.benefit generous.support.from.Naseem’s.Manx.Brain.Tumour.Charity.in.the. previous.year.to.bring.people.with.glioblastoma.closer.to.relevant.research

14 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

PRIME.has.successfully.supported.research.applications.to.the.value.of. £20m,.with.partners.who.include:

The story of a trial: PORTRAIT

Working.with.Dr.Gerben.Borst,.we.inputted.into.the.PORTRAIT.study,.which. is.to.explore.how.using.Optune.prior.to.and.following.surgery.might. improve.surgical.outcomes .

We.worked.together.to.plan.for.the.patient.and.public.involvement.and. engagement.(PPIE).strategy,.which.began.with.setting.up.focus.groups .

We.organised,.recruited.for.and.facilitated.focus.groups.for.Dr.Borst,.where. he.shared.the.study.design.with.the.community.and.they.fed.back.their. thoughts.and.ideas .

Following.review.of.the.study.design,.a.PRIME.research.partner,.Grant. Stobart,.was.recruited.to.help.produce.patient-facing.materials.for.the.study .

The.PRIME.team,.Grant.and.the.PORTRAIT.team.met.regularly.to.work.on. informational.videos.for.those.recruited.to.the.study

This.also.determined.language,.accessibility.and.preferences.for.those. enrolled Throughout.the.design.process.of.the.study,.Dr.Borst.would.refer. to.Grant.and.the.PRIME.team.at. brainstrust .for.input.and.discussion .

Dr.Borst.can.use.our.ongoing.PPI.input.to.support.his.funding.application,. increasing.the.strength.of.the.study.proposal .

The story of a trial: APPROACH

Analysis of Proton vs. Photon Radiotherapy in Oligodendroglioma and Assessment of Cognitive Health.

–. Funded.by.the.National.Institute.for.Health.Research.(NIHR):.£1,499,803

brainstrust ’s.role.as.co-investigator.involves.support.of.the.Trial. Management.Group.(TMG).with.two.further.experienced.patient.advocates,. each.from.two.participating.centres These.individuals.form.the.PPI.panel. that.advises.APPROACH.researchers.and.fully.participates.in.the.decisions. needed.as.the.study.proceeds

This.PPI.panel.is.self-organising,.ensuring.that.it.is.fully.integrated. throughout.preparation,.execution.and.dissemination,.and.in.the. governance.structures brainstrust .assisted.with.establishing.the.terms.of. reference.and.methodology.for.PPI.so.that.PPI.is.truly.in.the.DNA.of.the. trial This.will.be.facilitated.through.a.PPI.panel At.regular.touch.points,.a. focus.group.of.patients,.caregivers.and.the.public.is.consulted.to.ensure.that. value.is.added.and.impact.is.made The.panel.ensures.that.patient.opinion,. experience.and.insights.are.garnered.and.heard,.and.it.provides.a.bridge.for. dialogue.between.patients.and.clinicians

The.activity.is.discursive.and.participative.in.its.consideration.of.evidence. emerging.from.the.trial,.and.it.identifies.areas.of.patient.impact.where. further.information.is.needed brainstrust .also.assists.with.dissemination.of. trial.news.and.results Developing.dissemination.strategies.is.a.core.part.of. our.work This.is.done.through.established.networks.that.include.the.NCRI. consumer.forum,.charities,.neuro-oncology.societies.and,.in.the.case.of.this. trial,.radiotherapy.organisations .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 15

Our influence – informing change in the future

Brain.tumours.present.severe.challenges.to.society.in.the.UK,.not.only. affecting.individuals.and.families.but.also.our.healthcare.systems.and. government These.broader.challenges.include:.

Healthcare burden: .Diagnosing.and.treating.brain.tumours.involves. complex.procedures,.including.surgery,.radiation.therapy.and.chemotherapy These.treatments.require.specialist.medical.expertise.and.equipment,. which.strains.resources

Limited treatment options: .Brain.tumours.are.difficult.to.treat,.and.in.many. cases,.there.are.limited.effective.treatment.options This.leads.to.frustration. among.patients.and.their.families,.as.well.as.healthcare.professionals,.who. are.trying.to.provide.the.best.care.possible .

Long-term care needs: .Brain.tumour.survivors.require.expensive.long-term. care.and.support.due.to.ongoing.medical.and.psychological.needs This. strains.families.and.systems.alike .

Research and funding: .Brain.tumours.remain.an.area.of.active.research,.but. funding.for.brain.tumour.research.is.limited.compared.to.other.diseases This.hinders.the.development.of.new.treatment.options.and.innovative. therapies .

Public awareness and stigma: .There.is.a.lack.of.public.awareness.and. understanding.about.brain.tumours,.leading.to.stigma.and.misconceptions This.impacts.patients’.social.interactions.and.ability.to.access.support .

Access to care: .As.highlighted.by.the.Tessa.Jowell.Brain.Cancer.Mission.and. our.experience.supporting.people,..inequalities.in.access.to.gold-standard. healthcare.and.treatment.are.a.challenge .

Impact on employment and finances: .A.brain.tumour.diagnosis.is.expensive. to.families,.and.to.the.state Diagnosis.and.treatment.lead.to.disruptions.in. employment.and.financial.stability Patients.face.challenges.in.maintaining. employment,.due.to.treatment.schedules,.cognitive.impairments.and. physical.limitations .

We.are.here.to.address.these.challenges,.participating.in.a.collaborative,. multidisciplinary.ecosystem.striving.for.better.support.services.for.patients. and.their.families,.improved.access.to.care,.increased.research.funding. and.enhanced.public.awareness Collaborative.efforts.between.charities,. healthcare.professionals,.researchers,.policymakers.and.advocacy.groups. are.making.progress.in.managing.the.societal.challenges.posed.by.brain. tumours.in.the.UK .

We.are.conscious.that.as.a.charity,.we.are.here.not.just.to.alleviate.

challenges.that.the.brain.tumour.community.faces.in.the.here.and.now,.but. also.to.work.for.a.better.world.tomorrow,.for.people.diagnosed.with.a.brain. tumour.in.the.future .

In.acknowledgement.of.our.relatively.small.size,.we.conduct.our. campaigning.and.influencing.activity.collaboratively,.carefully.and.with.a. laser.focus.on.patient.needs .

We.proactively.partner.with.clinical.bodies,.hospitals.and.clinical.teams,. other.charities.and.community.interest.groups,.notably.Brain.Tumour. Research,.the.Tessa.Jowell.Brain.Cancer.Mission,.the.All-Party.Parliamentary. Group.on.Brain.Tumours,.One.Cancer.Voice,.the.Children.and.Young.People. Cancer.Coalition,.the.International.Brain.Tumour.Alliance.and.Cancer52,.to. make.sure.brain.tumour.patients.and.their.caregivers.have.a.voice

16 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Key.concerns.we.are.looking.to.be.addressed.are:

l. quality.and.equality.of.care.inside.and.outside.the.clinic

l. prompt.diagnosis

l. addressing.delays.in.follow-up.and.treatment

l. NHS.workforce.shortages

l. cost.of.living.after.brain.tumour.diagnosis.and.access.

to.support

l. implementation.of.shared.decision-making.

l. access.to.novel.treatments.and.therapies.and.adaptive.trial.design l . better.access.to.funding.for.brain.tumour.researchers .

We.go.about.this.work.with.a.positive.approach.and.the.belief.that.‘none.of. us.is.as.smart.as.all.of.us’ If.something.is.not.working.for.our.community,. we.are.quick.to.acknowledge,.slow.to.blame.and.swift.to.seek.a.solution,. with.every.effort.to.bring.the.power.of.our.ecosystem.to.bear.on.a.solution . Please.refer.to.the.‘Collaborations,.networks.and.advisers’.section.of.this. report.for.more.information.about.who.we.are.working.with .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

17

Award winning work that improves patient experience

We.have.been.working.collaboratively.with.two.NHS.trusts.in.Liverpool. and.Preston.to.improve.the.patient.pathway,.both.in.terms.of.experience. and.service.effectiveness Issues.included.no.brain.site-specific.team.based. at.acute.trusts,.which.led.to.a.fragmented.pathway.and.poor.patient. experience Patients.were.falling.between.the.emergency.department,. acute.medical.units,.acute.oncology.and.palliative.care,.so.that.nobody.had. responsibility.for.the.patients This.meant.a.lack.of.follow-up,.no.central. point.of.contact.and.a.lack.of.information,.so.patients.didn’t.know.what. timescales.they.could.expect.or.what.the.next.steps.were Patients.and. their.caregivers.were.interviewed.by. brainstrust .support.specialists.in.focus. groups.and.by.telephone.so.that.we.could.work.with.the.NHS.trusts.to. improve.the.patient.experience.and.service.effectiveness.based.on.their. feedback We.are.very.grateful.to.everyone.who.has.given.us.the.time.and. honesty.to.deliver.this.work

The.outcomes.of.this.work.have.led.to:

This.work.has.been.shared.at.a.local.level.and.is.easily.transferable.to.other. NHS.trusts It.won.a.Nursing.Times.Award.in.2022,.and.acute.oncology. teams.from.London,.Birmingham,.Barnsley,.Wigan.and.Oxford.have. expressed.a.desire.to.replicate.this.work The.work.also.won.a.Macmillan. Professional.Excellence.Award .

By bringing patients closer to their clinical teams we have been able to help develop award winning patient experience in hospitals.

18 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Collaborations, networks and advisers

‘None of us is as smart as all of us’

Indeed,.meaningful.collaboration. and.co-creation.is.central.to.our. strategy.and.ethos.as.we.work. to.secure.the.best.outcomes.for. anyone.who.is.living.with.a.brain. tumour Our.partnerships,.of.which. we.nurture.around.80,.are.global. and.fall.into.four.themes:

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 .

Patient-focused

Public Health

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.take.advantage.of. training.opportunities,.such.as.our.expert-led.webinars.and.coaching. programme .

Clinically focused

Clinical.collaborations.are.hubs.of.clinical.practice.and.research,.such.as. the.British.Neuro-Oncology.Society.(BNOS),.the.National.Cancer.Research. Institute.(NCRI).and.the.Cochrane.Collaboration We.are.very.proud.of.our.

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 2022 – 31 March 2023 19

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.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 .

Notably,.we.have.enjoyed.our.ongoing.relationship.with.the.Tessa.Jowell. Brain.Cancer.Mission brainstrust ’s.chief.executive,.Will.Jones,.brings.our. experiences,.insights.and.the.voices.of.our.communities.to.the.Joint. Strategy.Board.of.the.mission .

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:

l. Baker.McKenzie l. Louise.Baker l. Charisma.Charity.Recruitment l. McQueenie.Mulholland l. Class.Networks l. Nifty.Communications l. Eric.Callister l. Rhys.Coren,.RA l. Google.UK l. Salesforce l. Greenberg.Traurig,.LLP l. Smarter.Not.Harder.(SNH) l. Harrison.Black l. TechSoup l. Irene.Clarke l. Think.Creative.Consultants.Ltd l. J.Pullan.&.Sons l . Thrive.Partners .

Reaching out to all available support networks is key. We were in such shock at the time of my son’s diagnosis and found charities later.

Caregiver to a low grade glioma patient

20 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Your support

This.year.our.supporters.raised.£691,706.to.fund. brainstrust ’s.mission This. income.remains.from.a.diversified.mix.of.traditional.charity.fundraising. activity Our.funding.comes.from:

l. trusts.and.foundations

l. direct.and.regular.giving

l. companies.who.support.our.work

l. sponsored.events.and.challenges

l. community.fundraising

l. Gift.Aid.recovery

l. in-memory.giving

l. trading

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

l. special-purpose.fundraising.to.enable.communities.to.access.novel. treatments.and.therapies .

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

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 .

This.being.said,.we.remain.in.a.challenging,.and.changing.fundraising. environment Our.three-year.year.planning.post-Covid.anticipated.a.rapid. return.to.a.fundraising.mix.that.relied.heavily.on.supporter.fundraising,.as.it. was.before.the.pandemic.–.80%.supporter.income,.20%.grants .

However,.our.short-term.planning.and.activities.have.had.to.adapt.in. response.to.changes.in.the.fundraising.landscape,.where.headwinds. during.the.year.have.included.cost-of-living.pressures.for.supporters,. political.uncertainty.in.society,.increased.competition.for.grant.fundraising,. combined.with.unforeseen.increases.in.operational.costs.across.our.whole. organisation .

Our.short-term.planning.anticipates.these.challenges.–.support.from. philanthropic.and.grant-giving.partners.remains.as.important.as.ever.as. our.loyal.community.supporters.struggle.with.cost-of-living.pressures.and. uncertainty.at.home.and.work

We.continue.to.work.hard.to.rebalance.our.fundraising.mix,.but.to.achieve. the.healthy.and.sustainable.balance.of.2019,.we.will.need.the.wider.societal. pressures.to.ease

Hand.in.hand.with.the.fundraising.challenges.that.we.anticipate.will. play.out.for.at.least.the.rest.of.the.year,.we.are.actively.controlling.costs. wherever.possible.without.compromising.on.the.impact.of.our.work.in.the. communities.that.we.serve .

In-memory.fundraising,.team. brainstrust .(marathons.and.challenges).and. trust.and.foundation.fundraising.remain.areas.of.growth.for. brainstrust despite.these.challenges .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 21

Our income 2022–23

----- Start of picture text -----
Legacies:. £8,963
Investments:. £1,062
Restricted.income.fundraising.–. Personal.donations:.
partner.groups:. £71,086 £90,081
team. brainstrust
marathons.and.
challenges: £117,936
Total.income:. Grants.from.awarding.
£691,706 entities:. £242,951
Community.fundraising.
events:. £81,731
Trading:. £10,249
Corporate.grants.and.donations:.
Gift.Aid.tax.recovered:. £34,878 £32,769
----- End of picture text -----

Our expenditure 2022–23

Governance:. £12,468

Generating.restricted.income:. £3,485

----- Start of picture text -----
Generating.unrestricted.
income:. £59,218
Charitable.activities.
restricted.expenditure:.
£96,281
Total.expenditure:. Charitable.activities.
unrestricted.
£791,844 expenditure:. £620,392
----- End of picture text -----

As we reflect on another year of remarkable achievements, we are reminded that the true measure of our success lies not just in the numbers we’ve raised but also in the countless lives we’ve touched and the stories of transformation we’ve authored together. With gratitude for all those who have joined us, we move forward, inspired by the light of our community, which illuminates the darkest of moments that come with a brain tumour diagnosis.

Will Jones, Chief Executive, brainstrust

Thank you to our community of supporters

‘Be more Reesh’ – Donna’s Cardiff Half Marathon

Donna.signed.up.with.team. brainstrust .early.in.the.year,.taking. inspiration.from.her.friend.Areesha,. who.was.sadly.lost.to.a.brain. tumour.this.year Donna.describes. Areesha.as.someone.who.‘never. shied.away.from.a.challenge’ Donna.chose.to.set.herself.a. fundraising.target.of.£1,500 .

Turns out running a half marathon is pretty damn hard.

Thanks to everyone that donated to my fundraising efforts. Thank you to everyone who has asked about my training, checked in on me and said good luck to me. Thank you to everyone that came out and cheered today. Thank you to everyone that told me I could do it even when I didn’t think I could. Thank you to everyone who’s asked about why I’m doing it and let me talk to them about Reesh. And a special thanks to Laura for being the best training

22 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

buddy I could have asked for. I’m so glad you let me tag along with you on this ride.

And lastly, to Reesh, I miss you so much, but it felt like I had you with me today. And that in itself was worth this entire journey.

Thank you so much for your support along this journey. I’m so glad I picked brainstrust to fundraise for.

Prior.to.taking.part.in.the.half. marathon,.Donna.shared.her. thoughts.on.her.upcoming. challenge.with.team. brainstrust

The.Cardiff.Half.Marathon.took.place.on.2.October,.and.although.Donna.has. admitted.she’s.‘most.definitely.not.a.natural.runner,.or.an.experienced.one’,. she.trained.hard,.and.with.less.than.a.month.to.go,.we.invited.Donna.to. share.her.motivation.for.running.and.to.reflect.on.her.training.so.far .

I’ve been sitting in front of a blank screen for the last half an hour, trying to figure out how to start to write what motivated me to run the Cardiff Half. And with tear-stained cheeks, I reluctantly admit it was grief. That kind of grief that is all-encompassing and physically painful. That kind of grief that just makes you wish there was something, anything, you could do to make it go away, but there isn’t.

On 19 February 2022, I lost my dear friend Areesha to a brain tumour that she was diagnosed with less than a year before. Reesh was not like anyone I’d met before. She was wildly extroverted, loud, dramatic and absolutely hilarious. And she said yes to everything. Once, she flew to New York, then drove to Philadelphia on her own to meet up with our roller derby team and play the

48 hours later. last two games on our first USA tour. Then she flew back home To say Reesh lived life to the fullest is an understatement – she packed more into 35 short years than most do in a much longer lifetime. And I’m so glad she did.

I knew I wanted to do something to honour her ‘say yes’ attitude, and when my friend Laura said she was running the Cardiff Half in memory of Reesh, I asked if she wanted someone to do it with her. And the next thing I know, I’m signing up to run 13.1 miles, having not run in over six months and never having run more than seven miles in my entire life. But one thing I knew for sure was that if Reesh was still here, she’d be our biggest cheerleader.

Training has been full of ups and downs. It started off fairly well, and I was following my training plan, and it wasn’t too hard to motivate myself to put my trainers on and get some miles in. But unfortunately, after avoiding Covid for 2.5 years, my luck finally ran out. It hit me pretty hard, and I wasn’t able to run, or exercise at all, for five very long weeks. But patience (not one of my virtues) prevailed, and I managed to lace my trainers back up towards the end of August and restart training. It’s been humbling to not see the progression I wanted to. I’ve had to dramatically adjust my goals for the race, but it really has brought me back to the bigger picture of why I’m running. I am running for Reesh, for someone that was so incredibly full of life, so ready to take on any challenge and so willing to help her friends when they needed it. And I guess this is what running the Cardiff Half for brainstrust feels like to me: helping a friend.

I am so incredibly grateful for the generosity people have shown with their donations. Whilst I am nervous about the race, there is no doubt in my mind I can do it. And on the day, when I hit that inevitable wall, I’ll think of Reesh cheering me on and every single person who has supported me along the way.

Donna,.you’re.an.inspiration.–.we.can’t.thank.you.enough.for.your.amazing. support.and.for.smashing.your.fundraising.target.by.raising.a.huge.£1,630 .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 23

Kerstin Kramer’s 3 Pistes Cycle Sportive

On.Saturday.4.June,.Kerstin.Kramer.took.on.the.3.Pistes.Cycle.Sportive.(the. UK’s.highest.cycle.sportive).in.support.of. brainstrust In.an.epic.challenge,. she.tackled.eight.categorised.climbs,.five.of.the.UK’s.six.highest.roads.and. three.Scottish.ski.centres.–.all.spanning.103.miles

When.the.ride.was.originally. planned,.Kerstin.and.her.close. friend.and.fellow.GP,.Margaret,.had. pledged.to.conquer.this.incredible. challenge.together But.sadly,.last. November.Margaret.was.diagnosed. with.a.brain.tumour.and.suddenly. had.to.face.a.very.different.type.

of.challenge In.this.moment,.Margaret.and.her.family.reached.out.to. brainstrust .for.support.and.found.an.understanding.community.ready.to. welcome.them.with.open.arms While.Margaret.had.to.withdraw.from. the.challenge,.Kerstin.chose.to.ride.in.her.honour.and.raised.over.£2,200 in.support.of.her.chosen.charity,. brainstrust ,.and.the.wider.brain.tumour. community .

The inaugural Jim Woods Memorial Ride

‘ A.great.ride.in.memory.of.a.great.man ’ .is.how.one.Alton.Cycling.Club. member.described.the.Jim.Woods.Memorial.Ride .

The.inaugural.Jim.Woods.Memorial. Ride.took.place.on.Sunday.10.July The.ride.was.organised.by.John. Heath.in.memory.of.club.member. Jim.Woods,.who.sadly.died.of.a. brain.tumour.in.2020,.and.who.is. fondly.remembered.by.many .

In memory of Jim Woods

Jim.was.a.keen.club.cyclist,.joining.ACC.in.2010.on.his.return.from.France Always.good.company.on.and.off.the.bike,.Jim.loved.cycle.touring,.Sunday. club.rides.and.all.things.social .

Jim.was.diagnosed.in.September.2018.with.a.malignant.brain.tumour.and. sadly.passed.away.in.April.2020 He.is.hugely.missed.by.his.many.friends. and.family His.gentle.humour.and.keen.intellect.live.on.in.the.memories. of.all.who.knew.him .

The day of the ride

The.ride.began.on.Sunday.morning,.with.the.team. enjoying.excellent.weather.and.quiet.lanes For.many. at.the.club,.this.was.their.first.ever.Audax.ride,.and.the. 2006,.and. first.organised.by.Alton.Cycling.Club.since. it.was.a.great.success .

Considering.the.warm.weather,.the.team.of.60 friendly.cyclists.completed.an.impressive.100.km. and.raised.an.incredible.£ .for. brainstrust 773 .31 .

Alton.Cycling.Club.are.looking.forward.to.organising.this.as.an.annual. Audax.event.from.now.on The.next.ride.will.be.in.July.2024 We.cannot.wait!

24 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Dreaming big with Ravi Adelekan

In.December.2022,.8.year.old.brain.tumour.patient.Ravi.Adelekan.launched. his.fundraising.campaign.‘Ravi’s.Dream’.in.support.of.2.charities.close. to.his.heart.–. brainstrust .and.The.Brain.Tumour.Charity His.goal.was.to. raise.£250,000.for.the.work.of.the.charities.so.that.all.children.with.brain. tumours.can.get.the.help.they.need

Ravi’s.fundraising.journey.began.in.his.home.town.of.Brighton.with.the. launch.of.his.charity.music.video.–.a.cover.of.the.song.‘A.Million.Dreams’. from.The.Greatest.Showman With.appearances.from.Hugh.Jackman.and. Michael.Gracey.of.Greatest.Showman.fame,.the.video.also.features.an. amazing.array.of.internationally.acclaimed.musicians.including.Bastille,. Damon.Albarn,.Paloma.Faith,.The.Big.Moon,.and.Metronomy .

You.can.watch.the.video.here:.

www.youtube.com/watch?v=NDETq8P88SI Ravi.has.since.won.a.Pride.of.Britain.award. for.his.courage,.reaching.millions.in.his. mission.to.help.children.with.a.brain. tumour.to.be.better.supported .

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

25

Thank you to our trust and foundation supporters

Your.support.is.invaluable.and.vital.to.us;.it.has.allowed.us.to.widen.and. strengthen.our.local.communities We.value.our.relationships.with.all. our.generous.and.compassionate.funders.and.are.grateful.to.The.Rank. Foundation.for.its.ongoing.support

We.are.also.indebted.to.the.National.Lottery.Community.Fund.and.players. of.The.National.Lottery Their.grants.helped.us.support.many.more.people. with.our.high-impact.coaching,.allowed.us.to.reach.more.people.in.Scotland. and.to.plan.free.all-day.health.and.well-being.events

In.addition,.we.are.incredibly.privileged.to.have.been.supported.by.these. very.generous.funding.partners:

l . Garfield.Weston.Foundation

Thank.you,.all,.for.your.generosity,.and.for.the.incredible.kindness.of.an. anonymous.trust.donor Your.funding.has.allowed.us.to.be.there.for.an.everincreasing.number.of.people.who.need.us.and.to.help.them.live.their.best. possible.lives .

26 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Financial review

The.Trust’s.published.statutory.accounts.for.the.year.ended.31.March.2023 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.2023,.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.2022–2023.was.£692K.(2021–22:. £952K),.of.which.£71K.related.to.restricted.income.funds The.net.deficit. for.the.year.was.£100K.(2021–22:.£289K.surplus),.of.which.£32K.related.to. restricted.income.funds .

While,.as.reviewed.elsewhere.in.the.Trustees’.Annual.Report,. brainstrust ’s. charitable.impact.has.been.significantly.increased,.thus.increasing.our.reach. and.effectiveness We.have.had.to.invest.in.meeting.demand.and.scaling. our.efforts.over.the.year,.and.this.has.come.at.an.increased.cost.due.to.new,. planned-for.recruitment.and.an.increase.in.live.events Overall.expenditure. in.2022–2023,.at.£792K,.of.which.£100K.related.to.planned.expenditure.of. restricted.income.funds,.has.naturally.increased.year.on.year,.alongside.a. higher.level.of.activity,.from.the.previous.year.of.2021–22.(£663K) .

The.Trust’s.gross.income.for.2022–23,.at.£692K,.was,.as.noted.above,.a. decrease.on.the.£952K.raised.in.2021–22 However,.it.is.only.£16K.short. against.our.targets We.have.not.yet.seen.a.return.to.a.‘normal’.twelve. months.since.before.Covid-19,.but.our.supporters,.through.grants,.donations. and,.in.many.cases,.the.hard.physical.graft.of.traditional.fundraising. through,.for.example,.sponsored.and.testing.walks.and.marathons,.have. raised.this.money.despite.the.ongoing.economic.uncertainty.and.external. factors,.such.as.recruitment.and.cost-of-living.pressures.in.our.team.and.for.

our.community This.has.made.for.a.challenging.fourth.quarter.in.terms.of. fundraising.and.planning/pipeline.development,.but.the.significant.growth. in.our.reserves.last.year.has.helped.us.to.weather.the.storm .

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.National.Lottery.Community.Fund.and.other.substantial. funders .

The.Trust.has.only.cash.investments,.deposited.with.NatWest.Bank.and.The. Co-operative.Bank At.31.March.2023,.the.Trust.had.net.reserves,.including. our.restricted.income.funds,.of.£604K.(March.2022:.£704K),.which.included. unrestricted.reserves.of.£205K.(2022:.£274K).and.net.restricted.reserves.of. £399K.(2022:.£430K) The.unrestricted.deficit.for.the.year.in.review.has.been. deducted.from.our.general.charitable.funds .

The.Trust.has.a.long-standing.policy.of.holding.unrestricted.reserves.to. As.at.31.March.2023,.unrestricted. cover.four.months.of.defined.core.costs reserves.were.sufficient.to.cover.just.over.five.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 2022 – 31 March 2023 27

Our structure, governance, leadership and management

Our structure

brainstrust .is.a.mature.organisation We.are.confident.in.our.abilities,. our.purpose.and.our.impact As.we. near.the.end.of.our.current.strategy,. we.are.more.focused.than.ever.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.supports.people.across.the. UK,.and.these.people.can.access. impactful,.accredited. brainstrust resources We.are.a.resilient. organisation.that.has.transitioned. well.over.the.last.five.years.from. being.a.‘large.small’.operation.to.a. ‘small.big’.charity.with.a.scalable,. professional.and.resilient.structure .

----- Start of picture text -----
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
NCRI Support and Finance Governance Reach and Fundraising Commission
Impact and HR Effectiveness OSCR
NIHR
Public Health Statutory Auditor
England Patient Engagement Support Specialist Payroll and Audit HR Consultant Designer Fundraising HMRC
NHS Four Nations Officer – PRIME London. (Contracted.third. (Agency) (Freelance) Manager ICO
JLA and.South-East party) Trusts.and.
Foundations
NICE
NCRAS Support Specialist Support Specialist Communications Fundraising
Scotland Wales Manager Manager
Cochrane
Support Specialist Support Specialist Charity Resources Senior Fundraising
Midlands Northern.England Officer Officer
Support Specialist
Central.Southern.
England
----- End of picture text -----

28 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Our governance

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

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

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

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

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

Leading the way

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,. We.demonstrate.fairness,. supporters.and.beneficiaries.to.do.the.same integrity.and.resilience,.and.we.build.trust.with.our.actions .

l Look after people .–.At. brainstrust ,.we.promote.the.well-being.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.

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 29

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 .

Our board of trustees

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

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.eleven.years.and.the.chair.of.trustees.at. brainstrust .for. six.years .

Kevin Higgs

Trustee

In.a. Kevin.is.a.financial.adviser.and.has.been.a.trustee.for.fourteen.years 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.six.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.ten.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.neurooncology.lead.for.Thames.Valley.since.2012 Puneet.joined. brainstrust ’s.board. of.trustees.in.March.2021

30 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

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.17th.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 .

brainstrust senior staff contacts

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

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

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

Jodie Eveleigh ,. Head of Support ,. jodie@brainstrust .org .uk

Incidents and reporting

For.the.year.in.review,.and.indeed.for.the.duration.of.the.organisation’s. history,.we.have.had.no.reportable.incidents.relating.to.our.fundraising,.our. service.or.our.internal.operations We.have.in.place.policies.and.procedures. for.managing,.reporting.and.escalating.incidents.and.complaints The. following.are.available.on.request:

l. Whistleblowing.policy

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 31

brainstrust – Contents of the Financial Statements for the year ended 31st March 2023

Registered Charity Number: 1114634

Report of the Trustees and Audited Financial Statements for the year ended 31st March 2023 for brainstrust

Page 33 Report.of.the.Trustees.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34–35 Report.of.the.Independent.Auditors.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Balance.Sheet.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Cash.Flow.Statement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 Notes.to.the.Cash.Flow.Statement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37– 42 Notes.to.the.Financial.Statements.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Detailed.Statement.of.Financial.Activities.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Harrison Black Limited Statutory Auditor East Quay Kite Hill Wootton Bridge Isle of Wight PO33 4LA

32 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

brainstrust – Report of the Trustees for the year ended 31st March 2023

brainstrust – Report of the Trustees for the year ended 31st March 2023

31st.March. The.trustees.present.their.report.with.the.financial.statements.of.the.charity.for.the.year.ended. 2023 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. P.Plaha.

Auditors

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;.

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. 5th October 2023 .and.signed.on.its.behalf.by:.

C Baker .–.Trustee.

Harrison.Black.Limited. Statutory.Auditor. East.Quay. Kite.Hill. Wootton.Bridge. Isle.of.Wight. PO33.4LA

brainstrust .is.also.a.Scottish.Charity,.SC044642,.regulated.by.the.Scottish.Charity.Regulator.(OSCR) .

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 2022 – 31 March 2023 33

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.2023.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.have.been.properly.prepared.in.accordance.with.United.Kingdom.Generally.Accepted.Accounting.Practice;.and.

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

Basis for opinion

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

Conclusions relating to going concern

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

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

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

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

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.

34 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

Report of the Independent Auditors to the trustees of brainstrust

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.Part.4.of.the.Charities.(Accounts. and.Reports).Regulations.2008 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 East.Quay Kite.Hill Wootton.Bridge Isle.of.Wight PO33.4LA

Date:.13th.October.2023

brainstrust – Statement of Financial Activities for the year ended 31st March 2023

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
Totalfundsbroughtforward
TOTAL FUNDS CARRIED FORWARD		 Unrestricted)
fund)
£)		 Restricted)
funds)
£)		 2023)
Total)
funds)
£)
2022)
Total)
funds)
£)
409,642)
337,854)
281,002)
608,240)
1,062)
26)
–)
6,083)
409,642) –)
209,966) 71,036)
1,062) –)
–) –)
620,670) 71,036) 691,706)
952,203)
62,703)
90,184)
716,673)
558,284)
12,468)
14,963)
59,218) 3,485)
620,392) 96,281)
12,468) –)
791,844)
663,431)
692,078) 99,766)
(100,138)
288,772)
–)
–)
(71,408) (28,730)
2,563) (2,563)
(100,138)
288,772)
704,245)
415,473)
(68,845) (31,293)
273,874) 430,371)
205,029) 399,078) 604,107)
704,245)

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

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 35

brainstrust – Cash Flow Statement for the year ended 31st March 2023

brainstrust – Balance Sheet 31st March 2023

Notes
FIXED ASSETS
Tangibleassets
11
CURRENT ASSETS
Debtors
12
Cashatbank
CREDITORS
Amountsfallingduewithin
oneyear
13
NET CURRENT ASSETS
TOTAL ASSETS LESS CURRENT
LIABILITIES
CREDITORS
Amountsfallingdueaftermore
thanoneyear
14
NET ASSETS
FUNDS
17
Unrestrictedfunds
Restrictedfunds
TOTAL FUNDS		 Unrestricted)
fund)
£)		 Restricted)
funds)
£)		 2023)
Total)
funds)
£)
1,957)
77,711)
587,708)
665,419)
(39,796)
625,623)
627,580)
(23,473)
604,107)
205,029)
399,078)
604,107)		 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)
Notes
Cash fows from operating
activities
Cashgeneratedfromoperations
1
Interestpaid
Netcash(usedin)/providedby
operatingactivities
Cash fows from investing
activities
Purchaseoftangiblefxedassets
Interestreceived
Netcashprovidedby/(usedin)
investingactivities
Cash fows from fnancing
activities
Loanrepaymentsinyear
Netcashusedinfnancing
activities
Change in cash and cash
equivalents in the reporting period
Cash and cash equivalents at the
beginning of the reporting period
Cash and cash equivalents at the
end of the reporting period		 2023)
£)
(133,533)
(969)
(134,502)
–)
1,062)
1,062)
(9,679)
(9,679)
(143,119)
730,827)
587,708)		 2022)
£)
277,073)
(818)
1,957) –)
276,255)
77,711) –)
188,630) 399,078) (3,469)
26)
266,341) 399,078)
(39,796) –)
(3,443)
226,545) 399,078)
(7,169)
228,502) 399,078)
(7,169)
(23,473) –)
205,029) 399,078) 265,643)
465,184)
730,827)

The.financial.statements.were.approved.by.the.Board.of.Trustees.and.authorised.for.issue. on.5th.October.2023.and.were.signed.on.its.behalf.by:.

C Baker .–.Trustee.

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

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

36 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023

brainstrust – Notes to the Cash Flow Statement for the year ended 31st March 2023

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

Net (expenditure)/income for the reporting period
(as per the Statement of Financial Activities)
Adjustments for:
Depreciationcharges
Interestreceived
Interestpaid
Increaseindebtors
Increase/(decrease)increditors
Net cash (used in)/provided by operations
Analysis of changes in net funds
Net cash
Cashatbank
Debt
Debtsfallingduewithin1year
Debtsfallingdueafter1year
Total		 At1 4 22)
£)
730,827)
730,827)
(9,558)
(33,273)
(42,831)
687,996)		 2023)
£)
(100,138)
867
(1,062)
969
(38,189)
4,020
(133,533)
Cashfow)
£)
(143,119)
(143,119)
(121)
9,800)
9,679)		 2022)
£)
)
288,772)
2,675)
(26)
818)
(14,134)
(1,032)
277,073)
At 31.3.23)
£)
587,708)
587,708)
(9,679)
(23,473)
(33,152)
(133,440) 554,556)

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

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.

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

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 37

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

1. Accounting policies – continued

4. Investment income

Taxation

1.
Accounting policies – continued

4.
Investment income
Taxation
Thecharityisexemptfromtaxonitscharitableactivities
Fund accounting
Unrestrictedfundscanbeusedinaccordancewiththecharitableobjectivesatthediscretionof
thetrustees
Restrictedfundscanonlybeusedforparticularrestrictedpurposeswithintheobjectsofthecharity
Restrictionsarisewhenspecifedbythedonororwhenfundsareraisedforparticularrestrictedpurposes
Furtherexplanationofthenatureandpurposeofeachfundisincludedinthenotestothefnancial
statements
2.
Donations and legacies
2023)
£)
2022)
£)
Donations
90,081)
57,896)
Grantsfromawardingentities
242,951)
175,831)
Corporategrantsanddonations
32,769)
53,576)
Giftaidtaxrecovered
34,878)
50,551)
Legacies
8,963)
–)
409,642)
337,854)
3.
Other trading activities
2023)
£)
2022)
£)
Fundraisingevents
81,731)
75,417)
Saleof‘brainstrust’items
10,249)
12,472)
Sponsoredactivities
117,936)
174,339)
Activitiesofpartnergroups
71,086)
346,012)
281,002)
608,240)
Depositaccountinterest
5.
Raising funds
Raisingdonationsandlegacies
Fundraisingfees
Promotionalexpenses
Othertradingactivities
Tradingcostsandpurchases
Eventcosts
Sponsoredactivitiescosts
Aggregateamounts
6.
Charitable activities costs
DirectCosts)
£)
Charityactivities
714,187)		 2023)
£)
1,062)
2023)
£)
11,077)
31,318)
42,395)
2023)
£)
4,755)
5,941)
9,612)
20,308)
62,703)
Supportcosts)
(seenote7))
£)
2,486)		 2022)
£)
26)
2022)
£)
33,129)
26,782)
59,911)
2022)
£)
7,972)
11,433)
10,868)
30,273)
90,184)
Totals)
£)
716,673)

continued ...

continued ...

38 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

7. Support costs

Otherresourcesexpended
Charityactivities		 Governance)
costs)
£)
12,468)
2,486)
14,954)

8. Trustees’ remuneration and benefits

31st.March.2023.nor. There.were.no.trustees’.remuneration.or.other.benefits.for.the.year.ended. for.the.year.ended.31st.March.2022

Trustees’ expenses

There.were.no.trustees’.expenses.paid.for.the.year.ended.31st.March.2023.nor.for.the.year.ended. 31st.March.2022

9. Staff costs

Total.gross.salaries,.benefits.in.kind.and.employers.national.insurance.costs.for.the.year.ending. 31st.March.2023.were.£483,632.(2022.–.£431,130) .

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

Fundraising
CharitableActivities
Governance
Other		 2023)
4)
9)
1)
1)
15)		 2022)
4)
9)
1)
1)
15)

No.employees.received.emoluments.in.excess.of.£60,000

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

10 . Comparatives for the statement of financial activities

INCOME AND ENDOWMENTS FROM
Donationsandlegacies
Othertradingactivities
Investmentincome
Otherincome
Total
EXPENDITURE ON
Raisingfunds
Charitable activities
Charityactivities
Other
Total
NET INCOME/(EXPENDITURE)
Transfers between funds
Net movement in funds
RECONCILIATION OF FUNDS
Totalfundsbroughtforward
TOTAL FUNDS CARRIED FORWARD		 Unrestricted)
fund)
£)
337,854)
262,228)
26)
6,083)
606,191)
66,402)
538,688)
14,963)
620,053)
(13,862)
20,000
6,138)
267,736)
273,874)		 Restricted)
funds)
£)
–)
346,012)
–)
–)
346,012)
23,782)
19,596)
–)
43,378)
302,634)
(20,000)
282,634)
147,737)
430,371)		 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)

continued ...

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 39

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

11 . Tangible fixed assets

COST
At1stApril2022and31stMarch2023
DEPRECIATION
At1stApril2022
Chargeforyear
At31stMarch2023
NET BOOK VALUE
At31stMarch2023
At31stMarch2022
Debtors: amounts falling due within one year
Tradedebtors
Otherdebtors
Prepayment		 Fixturesand)
fttings)
£)
1,905)
1,502)
103)
1,605)
300)
403)		 Website)
£)
11,176)
8,755)
764)
9,519)
1,657)
2,421)
2023
£
1,000
39,462
37,249
77,711		 Totals)
£)
13,081)
10,257)
867)
11,124)
1,957)
2,824)
2022)
£)
(90)
15,499)
24,113)
39,522)

12. Debtors: amounts falling due within one year

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

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

2023)
£)
Othercreditors
23,473)
Loans
Ananalysisofthematurityofloansisgivenbelow:
2023)
£)
Amountsfallingduewithinoneyearondemand:
Otherloans
9,679)
Amountsfallingduebetweentwoandfveyears:
Otherloans–1–5years
23,473)
Leasing agreements
Minimumleasepaymentsundernon-cancellableoperatingleasesfalldueasfollows:
2023)
£)
Withinoneyear
–)		 2022)
£)
33,273)
2022)
£)
9,558)
33,273)
2022)
£)
13,990)

15. Loans

16. Leasing agreements

13. Creditors: amounts falling due within one year

Tradecreditors
Othercreditors		 2023
£
10,832
28,964
39,796		 2022)
£)
12,840)
22,815)
35,655)
continued ...

continued ...

40 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

17. Movement in funds

Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
FundJ
TOTAL FUNDS		 At1 4 22)
£)
273,874)
710)
79,003)
27,034)
323,624)
–)
430,371)
704,245)		 Net)
movement)
infunds)
£)
(71,408)
2,566)
3,255)
5)
(36,664)
2,108)
(28,730)
(100,138)		 Transfers)
between)
funds)
£)
2,563)
(2,563)
–)
–)
–)
–)
(2,563))
–)		 At31 3 23)
£)
205,029)
713)
82,258)
27,039)
286,960)
2,108)
399,078)
604,107)

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

Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
FundJ
FundK
TOTAL FUNDS		 Incoming)
resources)
£)
620,670)
2,566)
5,070)
119)
19,040)
2,141)
42,100)
71,036)
691,706)		 Resources)
expended)
£)
(692,078)
–)
(1,815)
(114)
(55,704)
(33)
(42,100)
(99,766)
(791,844)		 Movement)
infunds)
£)
(71,408)
2,566)
3,255)
5)
(36,664)
2,108)
–)
(28,730)
(100,138)
continued ...

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

17. Movement in funds – continued

Comparatives for movement in funds

Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
TOTAL FUNDS		 At1 4 21)
£)
267,736)
677)
76,895)
30,031)
40,134)
147,737)
415,473)		 Net)
movement)
infunds)
£)
(13,862)
33)
2,108)
(2,997)
303,490)
302,634)
288,772)		 Transfers)
between)
funds)
£)
20,000)
–
–
–
(20,000)
(20,000)
–		 At31 3 22)
£)
273,874)
710)
79,003)
27,034)
323,624)
430,371)
704,245)
Comparativenetmovementinfunds,includedintheaboveareasfollows:
Incoming)
resources)
£)
Resources)
expended)
£)
Unrestricted funds
Generalfund
606,191)
(620,053)
Restricted funds
FundA
33)
–)
FundE
5,069)
(2,961)
FundH
3)
(3,000)
FundI
340,907)
(37,417)
346,012)
(43,378)
TOTAL FUNDS
952,203)
(663,431)		 Movement)
infunds)
£)
(13,862)
33)
2,108)
(2,997)
303,490)
302,634)
288,772)

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 41

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

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
FundJ
TOTAL FUNDS		 At1 4 21)
£)
267,736)
677)
76,895)
30,031)
40,134)
–)
147,737)
415,473)		 Net)
movement)
infunds)
£)
(85,270)
2,599)
5,363)
(2,992)
266,826)
2,108)
273,904)
188,634)		 Transfers)
between)
funds)
£)
22,563)
(2,563)
–)
–)
(20,000)
–)
(22,563)
–)		 At31 3 23)
£)
205,029)
713)
82,258)
27,039)
286,960)
2,108)
399,078)
604,107)

brainstrust – Notes to the Financial Statements for the year ended 31st March 2023 – continued

17. Movement in funds – continued

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

Unrestricted funds
Generalfund
Restricted funds
FundA
FundE
FundH
FundI
FundJ
FundK
TOTAL FUNDS		 Incoming)
resources)
£)
1,226,861)
2,599)
10,139)
122)
359,947)
2,141)
42,100)
417,048)
1,643,909)		 Resources)
expended)
£)
Movement)
infunds)
£)
(1,312,131)
(85,270)
–)
2,599)
(4,776)
5,363)
(3,114)
(2,992)
(93,121)
266,826)
(33)
2,108)
(42,100)
–)
(143,144)
273,904)
(1,455,275)
188,634)

NATURE AND PURPOSE OF FUNDS

General Fund

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

Restricted Funds

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

18. Related party disclosures

During.the.year.the.charity.purchased.services.from.Fitton.Holman.Creative.Limited.totalling.£14,985 (2022.–.£10,462) 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,.£3,960.(2022.–.£4,320).for.administrative.use.of.their.property .

The.co-founder’s.daughter,.Leonora.Bulbeck,.supplied.editorial.services.during.the.year.to.the.charity. totalling.£2,100.(2022.–.£1,890).at.a.commercial.rate .

continued ...

42 brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

brainstrust – Detailed Statement of Financial Activities for the year ended 31st March 2023

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
Total incoming resources
EXPENDITURE
Raising donations and legacies
Fundraisingfees
Promotionalexpenses
Other trading activities
Tradingcostsandpurchases
Eventcosts
Sponsoredactivitiescosts		 2023)
£)
90,081)
242,951)
32,769)
34,878)
8,963)
409,642)
81,731)
10,249)
117,936)
71,086)
281,002)
1,062)
–)
691,706)
11,077)
31,318)
42,395)
4,755)
5,941)
9,612)
20,308)		 2022)
£)
57,896)
175,831)
53,576)
50,551)
–)
337,854)
75,417)
12,472)
174,339)
346,012)
608,240)
26)
6,083)
952,203)
33,129)
26,782)
59,911)
7,972)
11,433)
10,868)
30,273)

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

brainstrust – Detailed Statement of Financial Activities for the year ended 31st March 2023

Other trading activities
Charitable activities
Medicalgrantsandcosts
Patientsupportandstaffng
Salaries
Travel
Administration
Offcerent&rates
Fixturesandfttings
Depnofwebsite
Support costs
Governance costs
Auditors’remuneration
Insurance
Other
Bankloaninterest
Totalresourcesexpended
Net (expenditure)/income		 2023)
£)
1,400)
463,460)
159,660)
22,243)
35,241)
31,316)
103)
764)
714,187)
3,225)
2,486)
8,274)
969)
14,954)
791,844)
(100,138)		 2022)
£)
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)

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

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023 43

Get in touch

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

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:. 5 October 2023

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

brainstrust trustees’ annual report and accounts: 1 April 2022 – 31 March 2023

44

When I was feeling overwhelmed after my husband’s craniotomy, I reached out to the team at brainstrust . Their support has been reassuring and the family and friends Meetups have provided an opportunity for me to connect with others in a similar situation. All the team at brainstrust have been amazing at keeping in touch and I am very grateful for the brain box and the informative booklets in it.

Caregiver

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 2023 .