2024-03-31-accounts

Trustees’ annual report and accounts 1 April 2023 – 31 March 2024

Contents

Our challenge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Strategic report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Our purpose and our work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Key achievements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 The impact we are having for the people who need us . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 PRIME – bringing people closer to research . . . . . 12 Our influence – informing change in the future . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Collaborations, networks and advisers . . . . . . . . . . . 19 Your support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Thank you to our community of supporters . . . . 23 Trusts and foundations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Financial review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Our structure, governance, leadership and management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Report of the Trustees and Audited Financial Statements for the year ended 31st March 2024 for brainstrust . . . . . . . . . . . . . . . . . . . . . 32 Get in touch . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45 Declaration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

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brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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

I have experienced some heavy pressure type headaches. I found this and my balance were often worse if I didn’t have my afternoon nap.

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

Six weeks of radiotherapy, followed by six rounds of chemotherapy, would start in September. I was petrified, though, for around a month.

Patient

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’.

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 and 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, which 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 12% of adults survive tumour in the UK . Only 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 people live their best possible lives 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.

Patient

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Strategic report

Introduction from Chair and CEO

Thank you for taking an interest in brainstrust ’s work .

In many respects, the year in review has been one of the most challenging in brainstrust ’s history . Awareness of our challenge and our work has never been stronger, though as a result, demand for our support has never been greater . Furthermore, the complexity of needs within our community has grown . Driving this complexity is a struggling healthcare system, greater patient and family engagement in care and condition and a growing landscape of novel treatments and therapies to explore in the UK and internationally, particularly for high-grade brain tumour patients .

We have applied reserves to sustain our service, managed costs meticulously, and simultaneously we have refocused the way we deliver our service . This has all been to the advantage of our beneficiaries . We have increased our impact for the brain tumour community by shifting to a ‘diagnosis-led’ mode of service delivery, with coaching at the heart, and as a result have become more effective and efficient .

The second half of the year saw a return to fundraising growth . We began to rebuild reserves and financial resilience, and we are supporting our growing community of

people with a brain tumour and their caregivers more effectively than ever .

Despite the devastating circumstances our beneficiaries find themselves in having heard the words ‘you have a brain tumour’, brainstrust remains a happy, vibrant and progressive place to work and to volunteer . It is the passion, energy and focus of our team and volunteers throughout the year that have enabled us to drive change within and outwith for the people who need us . The unwavering focus on impact and outcomes for our community has enabled us to adapt promptly to our context and ride out ongoing and existential instability .

Concurrently we have faced yet more existential challenge with the global pandemic, swiftly followed by severe and sudden increases in the cost of business and cost of living .

However, in anticipation of ongoing uncertainty, we built reserves throughout previous years and as a result have been able to rise swiftly and decisively to these challenges .

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brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

We must also acknowledge with deep sadness the death of brainstrust co-founder Peter Bulbeck, in August 2023 . Peter’s commitment and contribution to brainstrust ’s growth has been astonishing . His influence fostered a powerful team culture, impeccable governance and a firstclass financial track record . Peter remained a close friend and colleague to us all and our community until just days before his death . He held a vital role as head of governance, compliance and HR and was our chief financial officer .

While devastating to lose a member of the brainstrust family, this news was not unexpected – in recent years our board and executive leadership team have been able to

plan carefully so that our finance and governance capabilities have not been unduly impacted .

We now look forward to the year ahead, where 5 we enter the final year of our current fiveyear strategic cycle . Our immediate goals are to sustain our return to growth so that we can reach more people, and deliver more impact and drive meaningful change for everyone in the UK with a brain tumour diagnosis . This is coupled with an ambition to explore in depth with our collaborators and beneficiaries what it is they need from us, and what it is that brainstrust needs to thrive in the years to come . We are looking forward with new energy, expertise and enthusiasm to the next five years .

We hope you enjoy learning about brainstrust , our impact, our challenge and our achievement in the pages that follow .

Thank you all, sincerely and as ever, for your support .

Chris Baker Will Jones Chair of Trustees Chief Executive

Thank you so much for your comprehensive and massively helpful reply; I can’t tell you how helpful this is to me. It feels as though a light has been switched on and I can see potential routes to explore, including support for carers and family.

I very quickly wanted to reply to you as a courtesy, and I will certainly follow up your ideas and suggestions. I will be sharing this within the family, and together we can discuss options. What you have offered us here is a way forward. Before this I feared I would go down an internet rabbit hole with no idea what I would be faced with. Once again my profound gratitude for your help and advice and my wider gratitude for the brilliant work you and your organisation are doing for all those impacted by this condition.

Feedback from a caregiver

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brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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 close work with our community of people with a brain tumour, and their caregivers, that a brain tumour is isolating, the journey is confusing, communicating well is hard, behaviour and personality change devastates relationships, fatigue impacts 95% of those diagnosed, and there is a huge financial impact as work stops . These are just some of the challenges, and these challenges are not addressed in either the laboratory or the hospital . They are addressed at home, where help is hard to find .

How we got here

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

We heard:

• l You spend more time being a person than you do being a patient .

• l As a person, you are more resourceful, more proactive and more confident in the face of challenges .

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brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

Louise is a most extraordinary communicator. I particularly like the way she relates what she is talking about to which part of the brain is relevant. It makes it all far more understandable. I hope to participate in the upcoming sessions. I’ve signed up for them.

Beneficiary feedback on brainstrust hypnotherapy

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:

l beneficiaries – people living with a brain tumour and their caregivers

l supporters

l current and prospective philanthropic funders l other charities

l brainstrust team members and trustees

l national research bodies

l local and national research funders

l clinical experts from all specialities l campaign groups .

Looking ahead

In 2024, work has begun with our community and collaborators on establishing our strategic direction for 2025 and beyond . Awareness of our work, understanding of our challenge, our scale, our reach and our impact have all grown during brainstrust has never been more this period . needed .

l Emotions and values drive your behaviour, not just clinicians . What matters to you is more important than what is the matter with you .

l People look at opportunities . As a person, you grow . Patients tend to focus on problems, and barriers are hard to overcome unless they can be treated or medicated .

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 life they want, because they are people first and patients second .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Key achievements

I have just received the brain box, which I must say is absolutely fantastic as a collective resource!

Navigating the complexities of brain tumours and especially how I will feel post treatment/surgery has been daunting but the resources that I have now have helped massively. The diary will be especially useful for tracking how I’m feeling/treatment etc.

Patient

Our support

I feel very fortunate to have the support of brainstrust . They are the only brain tumour charity focused on providing emotional support throughout the brain tumour journey. Helping people find out what is most important to them and encouraging them to develop resilience and engagement with their own treatment is empowering and the absolutely most useful thing that can be done when someone is living the journey.

Brain tumour patient feedback following coaching with brainstrust

Reaching more people, sooner.

Awareness of brainstrust and our work is increasing, with more people than ever before accessing our support and information .

This is the result of concerted work to make sure we reach more people sooner . This is in response to community feedback, which consistently tells us ‘I wish I’d known about your support earlier on my journey’ .

The number of people with a brain tumour that we are helping each year is increasing, and the

2023–24, 897 rate of increase is also increasing . In people with a brain tumour and 617 caregivers contacted brainstrust directly for support . This total of 1,514 people accessing our coaching, events or helpline is a 17% increase .

Number of people seeking direct support who are new to brainstrust

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----- Start of picture text -----
1,514
1,289
897
836
721
617
568
486
350
Caregiver Patient Total number
■ [ 2021–22 ] ■ [ 2022–23 ] ■ [ 2023–24]
----- End of picture text -----

Once people have contacted brainstrust for help, we are here for them wherever they are on their brain tumour journey, and whenever they need us . At the end of the year, we were helping around 400 people a month . This represents an upward trend from a slight downturn in activity levels in the first half of the year . At this point

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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inflation, the increasing cost of our work, and the impact of the inflated cost of living on supporter fundraising meant we had to restrict and then restructure the way we offered our service . We are now working as effectively and efficiently as we can to meet the complex needs of those people who seek our help . Over the year in review, our support team helped 4,689 people, an 8% increase on the preceding year, and double the number of the year before that (2021–22: 2,339 people) .

Number of people helped by brainstrust each month since 2021

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600
400
200
0
2021 2021 2021 2021 2021 2022 2022 2022 2022 2022 2022 2023 2023 2023 2023 2023 2023 2024
Apr Jun Aug Oct Dec Feb Apr Jun Aug Oct Dec Feb Apr Jun Aug Oct Dec Feb
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Everyone who seeks support from brainstrust can receive a brain box free of charge if they would like one . The contents are tailored to their circumstances, and the toolkit helps them to take control, be more resourced, understand their 2023–24 we clinical care and feel supported . In sent 453 brain boxes to people who needed them . This is nearly double the number (262) that we were able to send at the peak of the Covid-19 pandemic in 2020–21, and consistent with prepandemic levels .

Brain boxes sent to those that need them

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500
450
400
350
300
250
2019–20 2020–21 2021–22 2022–23 2023–24
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As the number of people we help increases, we are working hard to make sure we are working efficiently to cope with scale .

Increasingly we are hearing that many people find the information they are looking for online at brainstrust.org.uk and that this information is helping them to feel better resourced and more in control .

In 2023–24, 125,405 people conducted 306,311 pageviews on brainstrust.org.uk . This is an increase of 28% in users on the preceding year (2022–23: 98,253) and a 42% increase in pageviews . More people are looking at more information on brainstrust.org.uk .

The most-accessed pages share information about brain tumour symptoms, end-of-life care, the different types of brain tumours and the stories of brain tumour patients and their caregivers .

Three thousand people have now provided feedback on our online information . Of these people, 89% tell us that the information helped them to be more resourced, more confident or more in control .

Pro-contra feedback on most-accessed online information

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Page title Pro Contra Helpful
The brain box 886 39 95.78%
(95.78%) (4.22%)
End-of-life 597 57 91.28%
care (91.28%) (8.72%)
Anatomy and 149 39 79.26%
tumour types (79.26%) (20.74%)
Exercise 103 15 87.29%
and rest (87.29%) (12.71%)
Brain tumour 97 7 93.27%
symptoms (93.27%) (6.73%)
and diagnosis
Recovering 58 23 71.60%
from surgery (71.60%) (28.40%)
Information 57 12 82.61%
about (82.61%) (17.39%)
meningiomas
Download 44 5 89.80%
and resources (89.80%) (10.20%)
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brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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To be as accessible as possible, to as many people as possible, and to ensure we are operating as efficiently as we can in the face of increasing costs, we have been making a concerted effort to signpost our online information alongside our printed resources . Anyone can access our information any way they wish, and we are seeing a significant increase in downloads of digital versions of our revered printed information . Twelve thousand digital (PDF) resources were downloaded during the year, a 73% increase on the previous year (2022–23: 6,928) .

brainstrust has been instrumental in helping us accept and come to terms with the diagnosis of a brain tumour and the treatment. We have accessed the webinar meet-ups, which has helped us hear people’s experiences of going through it and what to expect and hearing positive stories as well as the harsh reality. Having a peer supporter has also been so helpful in being able to ask those awkward questions. We have met some brilliant, inspirational people through it, who we chat to regularly. My partner has really benefited from speaking to others going through it, and I am so grateful for this. Without brainstrust we would be a lot less positive and probably a lot more fearful than we are! I can’t thank them enough for the work they do and the difference they make. They are truly life savers.

Brain tumour patient

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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The impact we are having for the people who need us

Our approach to impact

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

Accountability: We are trusted to deliver impact for the brain tumour community with resources donated by individuals, companies and other charities . Measuring and reporting on our impact allows us to demonstrate how effectively we are using these resources to achieve our goals .

Application of our resources: Many charities are constrained by limited available resources . By measuring impact, we can identify which of our efforts are delivering the most significant results . Our impact data guides decision-making on how 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 brain tumour community .

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 evidence of the outcomes we are achieving or demonstrates the gaps 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 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 2023 – 31 March 2024

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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 .

Our impact

Our impact

You can see below how we have helped our community to navigate the complicated journey of living with a brain tumour diagnosis in the last year . The inner hexagon represents where people were on average when they first contacted us, and the outer hexagon represents their average latest scores .

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Less alone
Engaged with Part of a
clinical care community
Resourced On top
of things
Initial Supported
Latest
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We helped people the most in feeling a part of a community – taking the score from 2.6 to 3.4, a 20% improvement in the context of the 1 to 5 scale* . This jump represents the strength of our webinar and peer support services and also, we have learned, our fundraising events . All these activities bring our community together and connect them with others who share similar goals, challenges and experiences .

goals, challenges and experiences The next-highest increase comes from helping people to feel resourced, with an18% improvement in the context of the1to5scale* (3.0to3.7) We’re proud to offer materials that have been co-produced with our community such as our ‘behaviour and personality change’, ‘my radiotherapy book’ and ‘who’s in your clinical team’ resources to help people feel more knowledgeable and supported We also provide support via our brain boxes, online resources and informative webpages, which include information ranging from insights on novel therapies to the cancer pathways for young people and children	Impact indicator Initial Latest Difference % increase*
	Less alone 3.1 3.5 0.4 10%
	Part of a community 2.6 3.4 0.8 20%
	On top of things 2.8 3.3 0.5 13%
	Supported 3.2 3.7 0.5 13%
	Resourced 3.0 3.7 0.7 18%
	Navigating clinical care 2.9 3.4 0.5 13%
	* Percentages shown are calculated as distanced travelled on the1–5scale Each point (1to2,2to3,3to4and4to5) represents a25% change

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Overcoming isolation is still a big challenge for our community, and therefore for brainstrust . We aim to focus our efforts in the future on the priority of ‘feeling less alone’ . Here, we saw our smallest increase of 10%, from 3.1 to 3.5 . We understand that at first this feels contradictory to our strongest result of helping people to feel part of a community, but feeling lonely even when surrounded by loved ones and a supportive network is still a very real challenge . We recently collaborated with an individual diagnosed with a brain tumour who captures this disconnect well: ‘[After a diagnosis like this] it forces you to look inwards, which does mean you live a lot in your own head’ .

Our journey at brainstrust has been one of constant learning with, from and for our community . This data helps us understand what is most affecting an individual on their brain tumour journey . The feedback powers our personalised coaching, counselling, peer support and more . All are ways in which we help people overcome fear, engage with their challenges and care, improve their knowledge and understanding, and eliminate isolation .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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PRIME – bringing people closer to research

I am proud of being in tune with the needs of the brain tumour patient community through our constant dialogue, and that this relationship goes both ways. Because of PRIME, we can help people grow and learn. My work is a conduit that helps people understand brain tumour research.

We do need to help the research community understand the value of patient and public involvement and engagement (PPIE), and sometimes we are constrained by lack of capacity dt in our volunteer teams.

Looking ahead, we are thinking bigger, setting ambitious goals and want to make learning about brain tumour research as easy as possible.

Adam Thomson jit Patient Involvement Officer, brainstrust

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 . Through PRIME, we are able to improve the quality of clinical brain tumour research, ensure trials are more likely to be funded, and contribute to a healthier landscape of treatment for the brain cancer community .

We continue to see a healthy growth in our PRIME community, going from 57 volunteer advocates and partners in 2022 to 115 in 2023 and now 151 in 2024 . This community of research-primed and informed individuals is expert by experience and has made huge contributions to brain tumour research with top-level patient involvement support .

This expertise has been utilised in a vast range of projects aiming to improve care for those impacted . PRIME’s input is powered by a community with a breadth of tumour types, symptom burdens, lifestyle priorities and treatment preferences .

With PRIME supporting between 15 and 30 studies at any given time, we make sure that our volunteers have plenty of opportunity to engage with new and promising projects developing in the research landscape . :

We continue to improve the standard of patient and public involvement and engagement (PPIE) in clinical research, remaining thought leaders in this space and continuing to grow our service .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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We do this by:

• l collaborating with other charities, including Brain Tumour Research

• l exploring new ways to share our services with clinicians

• l having more conversations with researchers and research funders regarding funding for this vital service

• l continuing to develop a training and webinar programme for our volunteers

• l learning and adapting methods of delivering the best patient involvement .

We have continued to work in partnership with the charity Brain Tumour Research to grow this work to mutual benefit, and in the last year, we have introduced PRIME to Brain Tumour Research’s community in the form of a blog, successfully inviting the community to be involved . We have also received an incredibly generous donation in the name of Lazaros Sofikitis, a young artist who passed away following a glioblastoma diagnosis . He wanted the funds raised in his name to go towards a

project improving the quality of life for those diagnosed with a brain tumour in the future, and PRIME was chosen to carry on his legacy, which is integral to our work .

Since its inception, PRIME has successfully supported research applications to the value of £28.2 m, with partners who include:

A snapshot of our PRIME service in the last year

Our patient involvement and engagement support has served a range of important and pivotal projects that aim to improve care, quality of life and survival for those diagnosed . While many of these are clinical trials, we have also provided input for projects developing new technologies, studies to explore disparity of care and insights into tools and therapies for patients .

Here is a snapshot of some of our work in the last year .

BRAINatomy

BRAINatomy is a paediatric study exploring which brain regions are most and least safe to operate on in children . We have represented the patient community as a part of the PPIE team for BRAINatomy, alongside three others with lived experience, providing input and direction for study design at every stage . We also produced a video to promote and educate the community on the importance of the project . .

CortexCheck

CortexCheck is an in-development medical device that would support patients and healthcare professionals with prognosis using simple blood biopsies . With ongoing support, we have provided documentation review, perspective on community need and appetite for more robust information around a patient’s condition, as well as focus groups with the glioblastoma community .

Minderoo Precision Brain Tumour Programme

This project aims to integrate precision medicine into routine care in the NHS clinical setting for brain tumour patients . This would allow for a greater depth of understanding of someone’s tumour type and therefore which treatments are most effective for them . While this framework was being developed, we reviewed

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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the proposed process and provided insight into the potential sticking points for the patient community .

Clinically Vulnerable Community Research

As part of a former NCRI working group, we supported in the collection of data from the clinically vulnerable brain cancer community to better understand their specific needs . We identified the key gaps in their care and presented a poster and a talk at BNOS to share this knowledge with specialists across the landscape of brain tumour research .

LEGATO

We support LEGATO, an international phase 3 clinical trial looking into the potential benefits of chemo-irradiation compared to chemotherapy, through regular correspondence and input on the direction and design of the trial .

The progress of PRIME

As touched on earlier, the number of volunteers reflects our steady growth, but that only tells a small part of the story . A lot of our impact can’t be quantified but deserves to be celebrated .

In the last year, we represented the patient community as PPIE specialists in the Brain Tumour Research Novel Therapeutics Accelerator, twice, contributing to forward progress and exciting developments in multiple research projects . We have attended SBNS, BNOS, EANO and various other conferences and events to fly

the flag of the community and ensure that any researchers who need our support know we are here to provide invaluable insight to their study design .

We have also produced academic posters both to share knowledge of the benefits of PPIE and specifically for a project exploring how we can provide better care to those who are diagnosed with a brain tumour while being clinically vulnerable – striving to ensure equity of care even for those with complicated health needs .

We have enhanced our information and resources, making sure our glioblastoma and high-grade alternative therapies webpage is up to date with as many safe, accessible and reviewed alternative treatments as possible . Alongside this, we have also made our library of research available and accessible for anyone wanting to learn more about our input into research papers that aim to increase awareness and knowledge of the community’s priorities and needs, sorted by areas we determined to be most relevant to those affected the most .

We have also just begun collecting impact data to assess and guide the quality of our PRIME PPIE service . Feedback from three projects we provided robust support to have provided the following responses:

Feedback from PRIME partners and advocates

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----- Start of picture text -----
Question Response
(average)
out of 10
Do you feel like the PPIE 9.7
participants provided
meaningful input?
Did you feel like the 9.7
participants’ voices
were relevant?
Should this research be 9
implemented into practice,
do you expect the
participants’ input will
change outcomes for those
impacted in the future?
Do you feel like including 10
PPIE in this project was an
effective use of time and
knowledge?
10
How valuable did you find
the facilitation, organising
and input from PRIME?
----- End of picture text -----

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

14

When asked to explain why these responses were submitted, the following soundbites were provided as part of the responses:

• l We have already started to make changes based on the guidance and feedback received from participants in the sessions .

• l brainstrust are always professional, approachable, enthusiastic, experts in their field, and I have learned a lot from working with them .

• l Enjoyable, proactive, well organised,

communicative, insightful, encouraging, pivotal . Overall an excellent experience .

• l Incredibly helpful sessions with patients and caregivers across several domains of interest, including medical device design, clinical trial design and outreach efforts .

• l We had a motivated patient group with experience of reviewing documents and their own experience to draw upon .

Another key change we’ve seen since PRIME launched over three years ago is how the process of referral to our service has evolved . In its infancy, PRIME mainly supported those we already had connections with, but through effective input and powerful patient involvement, we have quickly become the go-to for gold-standard patient and public involvement and engagement . This means that through our presence at events, social media presence and constantly reinforced reputation through word of mouth, many now find us quickly as soon as they need us .

In April 2023, a father, teacher, football coach mentor, and most importantly a great friend of mine, Phil Norman, aka Norms, – was diagnosed with pilocytic glioastrocytoma which is an intrinsic tumour at the top of the spinal cord/base of the brain. Across the planet, this type of tumour currently has 34 cases identified of its kind.

On 5 June 2023, Phil had his biopsy, and it was confirmed in September that the cancer was terminal. Phil is the most incredible human being and has had the most positive outlook after the toughest few months anyone could ever imagine. The support system around him is incredible, and most of the time, Phil has held people up around him by his charismatic nature and positivity.

The man is the kindest, most down-to-earth person I have ever met. A role model to so many people, and he will continue to be for many years to come! Phil will be back teaching in March and be the first to beat the tumour!

I am going to be running the Barcelona Half Marathon braintrust . on 11 February to raise money for Cancer of the brain is still one of the least known forms of cancer and any support will be huge in bringing their research forward!

Ryan Doyle, Barcelona Half Marathon – March 2024

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Our influence – informing change in the future

We are here not just to alleviate challenges that face the brain tumour community in the here and now but also to work for a better world tomorrow, for people diagnosed with a brain tumour in the future. Participating in a collaborative, multidisciplinary ecosystem that strives for better support services and treatments for patients and their families allows us to contribute to improved access to care, increase research funding and enhance 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.

Helen Bulbeck

brainstrust Co-Founder and Director of Policy and Services

The last year has brought significant evolution for the brain tumour community and reflects a period of transition, and not just politically . Even a year ago, whole-genomic sequencing seemed a world away, the development of infrastructure to deliver the green shoots that are emerging

1 Purshouse, Karin, Helen J . Bulbeck, Alasdair G . Rooney, Karen E . Noble, Ross D . Carruthers, Gerard Thompson, and others, ‘Adult Brain Tumour Research in 2024: Status, Challenges and Recommendations’, Neuropathology and Applied Neurobiology , 50/2 (2024).

recommendations for adult brain tumour research in 2024 . This paper identifies seven universal brain tumour research priorities and three cross-cutting themes:

in neuro-oncology seemed an impossibility, and talk of building a national consortium that could work with national regulators, with multiple pharma partners and technology providers, was a mere whisper .

These span the full research pipeline and patient journey and are common to brain tumour research globally .

So what has changed? A seminal paper[1] was published in the last twelve months, which outlines the status, challenges and

A schematic outlining the cross-cutting themes and research for brain tumour research in the United Kingdom

Cross-cutting themes

==> picture [490 x 214] intentionally omitted <==

----- Start of picture text -----
Collaborative Funding Training
networks and
initiatives
Research priorities
Priority 1 Priority 2 Priority 3 Priority 4 Priority 5 Priority 6 Priority 7
Provide Identify target Use suitable Provide sufficient Develop Treat every Facilitate
diagnosis more drivers preclinical evidence accessible, patient living beyond
promptly of malignancy models and of therapeutic innovative and as a research a brain
assays opportunity evidence-based patient tumour
clinical trials
----- End of picture text -----

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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In addition, a round-table workshop (November 2023) exploring what needs to change resulted in the publication of a report (2024)[2] that identifies the challenges and potential solutions that face adults living with a brain tumour . Together these papers have drawn a line in the sand and given direction to key policymakers and funders . They have influenced government funding, and the NIHR is about to launch a new round of funding brainstrust was a that aligns with these priorities . key presence in the development and authoring of these papers .

Counter to these was the demise of the National Cancer Research Institute (NCRI) in the spring of 2023 . While unsettling and unexpected, brainstrust has worked closely with the NCRI patient and caregiver advocates to ensure that their voices remain front of mind in the clinical research community . Collaboratively with other brain tumour charities and the Tessa Jowell Brain Cancer Mission, we have regrouped and are launching a repurposed brain group in the autumn of 2024 .

Additional turbulence was brought about by the change in political power . We have the ear of the new Secretary of State for Health and Social Care, who has long been an advocate

2 Costello Medical and the Tessa Jowell Brain Cancer Mission, Reimagining Rehabilitation for Adults with Brain Tumours: A Roadmap (March 2024) https://www .costellomedical .com/wp-content/uploads/2024/03/ reimagining-rehabilitation-for-adults-with-brain-tumours .pdf [accessed October 2024]

of the brain tumour community as a shadow minister – Wes Streeting is a warm ally, and we are well known to him .

So, the future is shaping up well; this really has been a year of transition . Building, developing, progressing, working, collaborating, delivering, communicating are the activities that resonate through discussions in the community .

Key focuses include:

1. Building a national consortium, working with multiple pharma partners to deliver precision clinical trials in glioma, covering all novel therapeutic approaches via centralised clinical trial stratification . This includes working closely with regulators (MHRA, NICE) to develop approval pathways for genomically complex rare tumours, and providing structure for a compassionate access programme that will deliver robust real-world data .

2. Building infrastructure (with NHS England Genomic Laboratory Hubs and Genomics England) to deliver multiple omic technologies to provide deep characterisation of glioma patients in clinically meaningful time frames (<3 weeks) with centralised analysis linked to key focus 1.

3. Using consortium and multi-omic infrastructure (key focuses 1 and 2) to progress rapidly assets coming through the Tessa Jowell Brain Tumour Accelerator programme to patients .

4. Working with the National Biomarker Centre and others to deliver better longitudinal testing regimes for glioma patients – for example, advanced imaging techniques and liquid biopsy approaches to improve monitoring for disease recurrence .

5. Working with technology providers (GE, Microsoft) to develop the computational infrastructure to advance AI and provide better therapy planning for glioma patients .

We are a small, unified disease community, with a tightly knit NHS and scientific workforce and a charity sector used to close collaboration . We have opportunities in basic and translational research; the UK hosts many world-leading research hubs for brain tumours, and the unique alignment of the NHS and academia means we are well placed to translate new discoveries into

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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the clinic . We are keen to further develop these opportunities through the recently announced NIHR national research consortium, heralded as the next step in a £40 million government pledge to develop new life-saving and life-improving research . We have promising developments in genomics and precision medicine: brain tumours are one of the only cancers on the NHS England test directory for whole-genome sequencing, supporting the rollout of innovative new precision medicine trials as a test case for other cancers . Finally, there is a drive to bring the best of the NHS to the rest of the NHS: an NHS workforce committed to service improvement and sharing excellence across the country .

We understand the role we play in this exciting landscape . We are conscious that as a charity, we are here not just to alleviate challenges that face the brain tumour community in the here and now but also to work for a better world tomorrow, for people diagnosed with a brain tumour in the future . Participating in a collaborative, multidisciplinary ecosystem that strives for better support services and treatments for patients and their families allows us to contribute to improved access to care, increase research funding and enhance 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 .

In acknowledgement of our relatively small size, we conduct our campaigning and influencing activity collaboratively, carefully and with a laser focus on patient need . 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 with Cancer Coalition, the International Brain Tumour Alliance and Cancer52, to make sure brain tumour patients and their caregivers have a voice .

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 .

In July 2014 my father Andy, sister Charlie and I were faced with losing our beloved stepmum, Helen Noble (née Jefferson).

After a long and extremely difficult battle with a malignant brain tumour, Helen passed away. My family will never forget her kindness, sense of adventure and her incredible intelligence, and want to ensure we tell the story she could not tell herself.

In Helen’s honour, Elliot and I will be running the Barcelona Marathon on 10 March 2024. Fuelled by the kind donations of our friends and family, we want to help raise awareness and some much-needed funds for the vital work brainstrust does, to help find a cure for brain cancer and support the families going through a situation like ours.

Will Noble, Barcelona Marathon – March 2024

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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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 =s[b] living with a brain tumour . Our partnerships, of “ which we nurture around 80, are global and fall into the following four themes .

Patient-focused

These partnerships include clinical engagement with the 35 neuroscience and neurosurgical centres and organisations that are relevant to our community, such as Use My Data and the Patient Information Forum . Clinical engagement | is a priority, as this is one way in which we can reach the community . It is, however, a twoway 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 .

Society (BNOS), the former National Cancer Research Institute (NCRI) and the Cochrane Collaboration . We are very proud of our clinical network, which has been pivotal in the success of our webinar programme and the growth of our clinical research activity under the banner of PRIME .

This community’s involvement in our educational events has been transformative for our beneficiaries . We have built a community of over 20 clinical experts, who have selflessly given up their time and knowledge to help people living

Clinically focused

Clinical collaborations are hubs of clinical practice and research, such as the British Neuro-Oncology

19 .

with a brain tumour understand more about their conditions, why at times it is hard to make a choice about treatment, and how to live better with a brain tumour . This community continues to grow, and we are so grateful for the valuable and transformative expertise so generously gifted by this network .

Public Health

We work across the four Public Health nations . This year, this work has been particularly significant, as we have worked closely with the Public Health government departments to ensure that our community is well supported during the return of services following the Covid-19 pandemic . This work has included advocating for cohorts of people living with a specific type of brain tumour, to ensure the treatment and surveillance that they need has been accessible . Furthermore, by using data from the National Cancer Registration and Analysis Service to reassure the community that waiting times and urgent referrals are returning to normal, our work with Public Health has enabled us to keep our community updated in a meaningful and relevant way .

Charities

We have always worked closely with charities when we have recognised that it is in the best interests of the community . 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 (CYPCC); 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 . More broadly, we represent the brain tumour community on the One Cancer Voice steering 60 cancer charities, group . This is a group of over collectively supporting millions of people living with cancer . The collective is working to improve lives and outcomes for cancer patients .

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

Organisational partnerships and collaborations

Our team 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 Charisma Charity Recruitment

l Class Networks

l Eric Callister

l Google UK l Greenberg Traurig, LLP l Harrison Black l Irene Clarke l John Roberts Associates l Pullans l Louise Baker

l McQueenie Mulholland

l Nifty Communications l Salesforce

l Smarter Not Harder (SNH) l TechSoup l Think Creative l Thrive Partners

20 ©)

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

Your support

I don’t normally ask for donations, but this 10-miler is very local to me and on lanes I have run many times. For the past few years, I’ve watched from the sidelines for one reason or another, but this year I am able to take part. The best thing is this run supports the brainstrust charity.

Brain tumours devastated our family and have impacted very close friends too. So I’ll jog these 10 miles a few weeks before Keith’s and Darren’s anniversaries in remembrance of my very funny, wild, wonderful and stillmissed brothers.

Tara Gibbons, brainstrust Bass Belle 10-miler – November 2023

This year our supporters contributed £652,450 to fund brainstrust ’s mission . This income comes 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 special purpose fundraising to enable communities to access novel treatments and therapies .

There have been strong headwinds for supporter fundraising, with what effectively amounted to the cancellation of fundraising at the outset of the Covid-19 pandemic in March 2020, followed by pervasive cost-of-living and cost-of-business pressures in 2022, 2023 and 2024 .

We have weathered these periods well through careful, planned application of reserves and close management of costs across our whole operation . The second half of the year in review has seen us return to a fully diversified fundraising mix, and to growth in income . We have been able to reignite supporter fundraising, and we are delighted to see activity and income from community fundraising channels build in the second half of the year . This focus is bringing our work closer, once more, to the community we are here to serve .

Our three-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 . Last year we reported that this was taking longer than expected, but in the second half of this year, we have achieved this goal .

21 ©

A significant contributing factor to this achievement has been the acquisition of the Fit4theChallenge events portfolio and recruitment of Fit4theChallenge founder Ashley Hawkins as brainstrust fundraising events manager . The running events in the east of England have a track record of strong attendance, with the opportunity now to grow this portfolio and promote fundraising for our work alongside it . The first running event in November 2023 went exceptionally well – 465 runners took on the 10-mile route and raised £24,000 for our work .

There are still threats to charity fundraising – cost of living and cost of business remain inflated;

political and economic uncertainty and instability played out throughout the year; and increased competition for grant fundraising pervaded, the threat here being less the worthiness of our work but more the backlog created for philanthropic institutions caused by an overwhelming influx of applications to funders . The final quarter of the year saw many delayed but positive outcomes on this front for brainstrust , and we are grateful to each and every grant-making foundation that has chosen to support our mission .

Special appreciation and acknowledgement must also be made to those who have chosen to support brainstrust in memory of a loved one who has been lost to a brain tumour diagnosis .

Many chose to make a contribution to our work by way of appreciation for the support they have received on their journey, and also so that others can be supported in the future . In-memory fundraising has remained an area of growth for brainstrust , and with our ‘wonderful memories’ campaign, we encourage and support donors respectfully and positively .

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 .

Our income 2023–24

Our expenditure 2023–24

==> picture [337 x 210] intentionally omitted <==

----- Start of picture text -----
Legacies: £10,061
Investments: £1,302
Restricted income fundraising – Personal donations:
partner groups: £19,740 £88,928
team brainstrust Total income: Grants from awarding
marathons and entities: £162,644
challenges: £193,125 £652,450
Community fundraising Corporate grants and donations:
events: £88,931 £28,412
Trading: £14,331 Gift Aid tax recovered: £44,976
----- End of picture text -----

==> picture [341 x 185] intentionally omitted <==

----- Start of picture text -----
Governance: £16,946
Generating restricted income: £206
Generating unrestricted
income: £79,880
Charitable activities
restricted expenditure:
£11,971
Total expenditure: Charitable activities
unrestricted
£730,525 expenditure: £621,522
----- End of picture text -----

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Thank you to our community of supporters

brainstrust Bass Belle 10-miler 2023

Barcelona Marathon, March 2024

Sunday 26 November was the date for the renamed brainstrust Bass Belle 10 -miler . Where brainstrust has been a long-standing beneficiary of the event, this is the first time it took place as a brainstrust -led event, following the acquisition of the Fit4theChallenge portfolio and recruitment of event founder Ashley Hawkins . Not only did the event sell out, but it was also the day that new records were set . We had a record number of sponsors supporting the race, the highest number of runners fundraising for the event, and both the male and female course records were smashed . In total the event raised more than £24,000 for brainstrust , making it one of the most successful fundraising events for the charity .

Cambridge Half Marathon, March 2024

After a hiatus during the pandemic, we returned to Cambridge for the Cambridge Half Marathon . All 15 team brainstrust places were filled in record time, and the runners raised £8,500 for our vital work . Ashley Hawkins, fundraising events manager for brainstrust met up with the team brainstrust , runners at the Cambridge Half Marathon, and all were presented with a brainstrust water bottle as a thank-you for signing up for the event and for their amazing fundraising efforts .

Overseas challenges are a growing area for team brainstrust . They are popular and deliver strong fundraising results for the charity . Three runners took on the Barcelona Marathon for brainstrust and raised an incredible £6,000 . The appetite for overseas challenges is building, with 27 runners signed up for the Amsterdam Marathon or Half Marathon in 2024

Will Noble ran the Barcelona Marathon with team brainstrust :

In July 2014 my father Andy, sister Charlie and I were faced with losing our beloved stepmum, Helen Noble (née Jefferson).

After a long and extremely difficult battle with a malignant brain tumour, Helen passed away. My family will never forget her kindness, sense of adventure and her incredible intelligence, and want to ensure we tell the story she could not tell herself.

In Helen’s honour, Elliot and I ran the Barcelona Marathon on 10 March 2024. Fuelled by the kind donations of our friends and family, we want to help raise awareness and some much-needed

23 O

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

funds for the vital work that brainstrust does, to support the families going through a situation like ours.

Follow the Seagulls

One of the original charity treks, this portfolio of two-day, 50-mile coastal treks involves a unique navigational element that brings added challenge . The events are difficult; we don’t shy away from this – they have been developed to match the scale of people’s passion for brainstrust ’s cause .

In 2023, 32 people signed up for the treks, which took place in North Yorkshire, the Isle of Wight, Fife, Devon and, a new pilot event, East Sussex .

In order to address barriers created by increased costs of accommodation and travel, and tighter household budgets, we introduced one-day options in each location and reduced fundraising targets . This has been well received, and our smaller-than-usual teams of walkers raised £16,699 .

While fundraising has been strong and provides a vital contribution to our work, we have yet to see a return to pre-pandemic participant numbers . Early registration numbers for the year ahead suggest that we have turned the corner here, and Follow the Seagulls is returning to growth .

Ravi’s Dream: charity football match – 11 June 2023

On 11 June, Worthing FC transformed their 3,000-capacity ground into a vibrant hub of community spirit in support of Ravi’s Dream . The event was a day-long celebration of football, filled with excitement, camaraderie, and purpose . The day kicked off with brilliant under 8 girl’s and boy’s tournaments, showcasing the energy and enthusiasm of the young players, followed by a mixed-gender adult match . The event raised £1,500 .

When we got home from the event at Worthing FC, Ravi said, ‘That was the best Sunday of my life … Can we do it again?’ Gbenga, Ravi’s dad

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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The Jim Woods Memorial Bike Ride – 9 July 2023

9 July marked the second annual Jim Woods Memorial Bike Ride, an event that has quickly become a cherished tradition among local cyclists and the wider community . Hosted by the Alton Cycling Club, the ride was first established in 2022 by John Heath, a close friend and fellow club member, in memory of Jim Woods, who tragically passed away from a brain tumour in 2020 2023 event raised a wonderful £1,000 . The for brainstrust

When I first mooted the idea of a memorial ride in Jim’s memory, it was Wendy Woods who suggested that we should raise money for brainstrust , a suggestion that I was only too happy to embrace. I hope that our efforts have made a difference in some small way.

John Heath

Ayesha Bell’s ‘Crainiversary’ marathon walk – September 2023

Ayesha Bell’s ‘Crainiversary’ marathon walk stands as a powerful symbol of resilience and determination . Marking the anniversary of her first brain surgery, Ayesha embarked on this incredible journey to raise funds for brainstrust , channelling her personal challenges into a force for good .

Despite the physical and emotional toll of multiple surgeries, ongoing treatment, and caring for her daughter, Ayesha completed the 26.3 -mile walk through the Derbyshire Dales . Her remarkable effort not only raised £3,000 for brainstrust but also inspired countless others facing similar battles .

Wear Grey – 2 to 8 October 2023

The Wear Grey 2023 – Chalk for Change campaign was an incredible success, bringing people together to raise awareness and vital funds for brain cancer support . This year's initiative encouraged participants to use chalk to create grey-themed art and messages, symbolising the fight against brain cancer .

The campaign resonated widely, with individuals, schools, businesses and communities enthusiastically joining the cause . Through these creative efforts, and with widespread support, the campaign successfully raised around £15,000 .

It seemed appropriate that whilst planning my dad’s funeral, which was during brainstrust Wear Grey week, we asked for donations. We raised just over £581.

Wear Grey supporter

I would love to raise as many funds as we can for the fantastic cause, brainstrust , who have been incredibly supportive to me during these past 12 months and I know will continue to be into the future.

Ayesha Bell

25 OC)

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

Trusts and foundations

Your support is invaluable and vital to us; it has allowed us to widen and strengthen our brain tumour community . We want to say a very big thank you to all our generous and compassionate funders . We are grateful for the long-term support of funders, including the Edward Gostling, Rank and Garfield Weston Foundations .

Thank you all for your generosity, and for the incredible kindness of the trust donors who have supported our mission but expressed to us their wish to remain anonymous . Your funding has allowed us to be there for an ever-increasing number of people who need us and to help them live their best possible lives .

I feel supported through contact with people like yourself, so thanks again for all you do. You really are a lifeline to folk like me.

Patient

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

• l Darlington Building Society 5% Pledge Fund l GJW Turner Trust

l Pilkington Charities’ Fund

• l Sheffield Town Trust

• l The Souter Charitable Trust

• l Sovereign Health Care Community Programme

• l The Mishcon Family Charitable Trust

• l The Moondance Foundation

• l William A Cadbury Charitable Trust

• l The Wyseliot Rose Charitable Trust

• l Yorkshire Building Society Charitable Foundation .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Financial review

The Trust’s published statutory accounts for the year ended 31 March 2024 are incorporated in this Trustees’ Annual Report and include considerable detail on the source and application of funds, and 31 March the financial position of the Trust at 2024, 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 2023–24 was £652K (2022–23: £692K), of which £17K related to restricted income funds . The net deficit for the year was £78K (2022–23: £100K), of which £5 K surplus related to restricted income funds .

While, as reviewed elsewhere in the Trustees’ Annual Report, brainstrust ’s charitable impact has been increased, thus increasing our reach and effectiveness, we had to respond to a significant and challenging drop in income in the first six months of the year in review, and we moved quickly to manage costs to help put ourselves in good shape for the second half of the 2023–24, at £730K, year . Overall expenditure in

of which £12K related to planned expenditure of restricted income funds, has decreased year on year, from the previous year of 2022–23 (£792K) and is £19 K under our budgeted target .

The Trust’s gross income for 2023–24, at £652K, was, as noted above, a decrease on the £692K raised in 2022–23 . This was £103K short against our target . We had a very challenging first half to the year, with the cost-of-living crisis biting into our supporter fundraising, although our donors still managed to raise money despite the ongoing economic uncertainty, and external factors, such as grants, were slow to materialise with fierce competition across the sector . However, charitable fundraising picked up significantly in the last six months of the year, reducing our overall deficit and continuing to grow our reserves . The momentum has continued, and the first quarter of the next fiscal year has started extremely positively .

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 many substantial funders .

The Trust has only cash investments, deposited with NatWest Bank and The Co-operative Bank . At 31 March 2024, the Trust had net reserves, including our restricted income funds, of £526K (March 2023: £604K), which included unrestricted reserves of £122K (2023: £205K) and net restricted reserves of £404K (2023: £399K) . 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 cover four months 31 March 2024, of defined core costs . As at unrestricted reserves were sufficient to cover just over three months of core costs . Our reserves have sustained us well in the past, and now we are rebuilding those reserves for the next fiscal year .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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Our structure, governance, leadership and management

Our structure

brainstrust is a mature organisation . We are confident in our abilities and our purpose, and we are proud of 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, which 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 coaching, counselling and 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 .

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 high-performance culture. Chris Baker, Chair of Trustees

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 .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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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 works to promote, develop and instil purpose, autonomy and mastery throughout the organisation through a ‘tightloose’ 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 carry out the following:

l Set an example – It is important to

demonstrate our values in everything we do . We set high standards of behaviour and inspire colleagues, supporters and beneficiaries to do the same . We demonstrate fairness, integrity and resilience, and we build trust with our actions .

l Look after people – At brainstrust , we promote the 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 are open, honest and straightforward in what we say and write . And we provide specific, understandable and useful feedback .

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

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

l Build the future – We bring great people on board . We actively look for the widest range of candidates to strengthen our diversity . We encourage our colleagues to learn, develop new skills and pursue their career aspirations, whether at brainstrust or elsewhere . And we give people opportunity and responsibility at the right pace for them . We continually improve brainstrust ’s capability and the effectiveness and efficiency of our delivery . We try out new approaches and technologies and give others the time and space to do the same .

Our board of trustees

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

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 12 years and the chair of trustees at brainstrust , for seven years .

29 7

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

Kevin Higgs

Trustee

Kevin is a financial adviser and has been a trustee for 14 years . In a chance meeting while at a previous employer, Kevin was immediately taken by the dedication and commitment of the charity to focus on the support and well-being of patients and families diagnosed with a brain tumour . He knew that he wanted to be a part of the journey that brainstrust has been on since 2006

Stephen Warrington

Trustee

Stephen brings to the organisation extensive experience leading professional services businesses and consulting for major multinationals, and he has been a trustee for seven 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 eleven years . She brings a listening ear and an objective viewpoint to the board and is supportive of fundraising initiatives .

Gillian retired from brainstrust ’s board on 11 December 2023.

Puneet Plaha

Trustee

Puneet is an associate professor and consultant neuro-oncology surgeon in Oxford, with a specialist interest in brain tumours, especially endoscopic minimally invasive surgery and awake surgery . He has been a consultant neuro-oncology surgeon lead for the Oxford brain tumour MDT and neuro-oncology lead for Thames Valley since 2012 . Puneet joined brainstrust ’s board of trustees in March 2021

Jack Jarvis

Trustee

Jack is a serving British Army Commando and record-setting transatlantic solo rower . He brings tenacity, energy and a high-performance mindset to our board . Jack is an ardent and successful fundraiser, motivated by personal experience of a glioblastoma in his family, as well as by his own experience navigating a complex rehabilitative journey after a serious accident . He understands the value, opportunity and impact that brainstrust ’s work bears, and is our newest board member, joining in January 2024 .

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

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

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

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

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

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

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

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

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

Now in our 18th 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 trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

30

The brainstrust

==> picture [490 x 464] intentionally omitted <==

----- Start of picture text -----
team
Board
of Trustees
Chris Baker Jack Jarvis
Chair of Trustees Trustee
Kevin Higgs
Trustee
Senior Leadership
Team
Puneet Plaha
Trustee
Helen Bulbeck Kathy Springate Will Jones
Director of Services Head of Finance CEO
and Policy Stephen Warrington
Trustee
Jodie Eveleigh
Head of Support and
Support Services
Support and Finance Reach and Fundraising Governance
Impact Effectiveness and HR
Adam Thomson Harrison Black Catherine Fitton Ashley Hawkins Tim Colman
Patient Engagement Payroll and Audit Designer (Freelance) Fundraising Events HR Consultant
Officer – PRIME (contractor) Manager (Agency)
Carol Cochrane Karen Egerton David Lavelle Kieran Robinson
Support Specialist Finance and Communications Fundraising and
Governance Officer Manager Communications
Assistant
Ellie Baker Rebecca Cheriyan Sandra Portas
Support Specialist Charity Resources Fundraising
Manager Manager – Trusts and
Foundations
Mariel Compton- Steph Coffey
James Senior Fundraising
Support Specialist Officer
----- End of picture text -----

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

l Complaints procedure – patient services

l Complaints procedure – fundraising

l Complaints policy – staff

l Complaints policy – volunteers .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

31

brainstrust – Contents of the Financial Statements for the year ended 31st March 2024

Registered Charity Number: 1114634

Report of the Trustees and Audited Financial Statements for the year ended 31st March 2024 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– 43 Notes to the Financial Statements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43– 44 Detailed Statement of Financial Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

32

brainstrust – Report of the Trustees for the year ended 31st March 2024

brainstrust – Report of the Trustees for the year ended 31st March 2024

31st March The trustees present their report with the financial statements of the charity for the year ended 2024 . 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 (resigned 11.12.23) S Warrington P Plaha J L Jarvis (appointed 25.1.24)

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;

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

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

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

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

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

Approved by order of the board of trustees on 24th September 2024 and signed on its behalf by:

K Higgs – 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) .

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brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

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 2024 which comprise the Statement of Financial Activities, the Balance Sheet, the Cash Flow Statement and notes to the financial statements, including a summary of significant accounting policies . The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) .

In our opinion the financial statements:

• l give a true and fair view of the state of the charity’s affairs as at 31st March 2024 and of its incoming resources and application of resources, for the year then ended;

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

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

Basis for opinion

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

Conclusions relating to going concern

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

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

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

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 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 .

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

34

Report of the Independent Auditors to the trustees of brainstrust

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 August 2024

brainstrust – Statement of Financial Activities for the year ended 31st March 2024

INCOME AND ENDOWMENTS FROM	Notes	Unrestricted) fund) £)		Restricted) funds) £)		2024) Total) funds) £) 2023 Total funds £
Donations and legacies	2	335,021)		–)		335,021) 409,643
Other trading activities	3	296,590)		19,537)		316,127) 281,001
Investment income	4	1,302)		–)		1,302) 1,062
Total		632,913)		19,537)		652,450) 691,706
EXPENDITURE ON
Raising funds	5	82,539)		206)		82,745) 62,703
Charitable activities	6
Charity activities
Other		621,522) 14,287)		11,971) –)		633,493) 716,673 14,287) 12,468
Total		718,348)		12,177)		730,525) 791,844
NET INCOME/(EXPENDITURE)		(85,435)		7,360)		(78,075) (100,138)
Transfers between funds	18	2,000)		(2,000)		–) –
Net movement in funds		(83,435)		5,360)		(78,075) (100,138)
RECONCILIATION OF FUNDS
Total funds brought forward		205,029)		399,078)		604,107) 704,245
TOTAL FUNDS CARRIED FORWARD		121,594)		404,438)		526,032) 604,107

The notes form part of these financial statements

35 O

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

brainstrust – Cash Flow Statement for the year ended 31st March 2024

brainstrust – Balance Sheet 31st March 2024

						2024)	2023
		Unrestricted)		Restricted)		Total)	Total
		fund)		funds)		funds)	funds
FIXED ASSETS	Notes	£)		£)		£)	£
Tangible assets	12	1,089)		–)		1,089)	1,957
CURRENT ASSETS
Debtors	13	54,735)		–)		54,735)	77,711
Cash at bank		111,481)		404,439)		515,920)	587,708
CREDITORS		166,216)		404,439)		570,655)	665,419
Amounts falling due within
one year	14	(32,403)		–)		(32,403)	(39,796)
NET CURRENT ASSETS		133,813)		404,439)		538,252)	625,623
TOTAL ASSETS LESS CURRENT
LIABILITIES		134,902)		404,439)		539,341)	627,580
CREDITORS Amounts falling due after more than one year	15	(13,309)		–)		(13,309)	(23,473)
NET ASSETS		121,593)		404,439)		526,032)	604,107
FUNDS	18
Unrestricted funds						121,593)	205,029
Restricted funds						404,439)	399,078
TOTAL FUNDS						526,032)	604,107

		**2024 **	2023
	Notes	£	£
Cash flows from operating activities
Cash generated from operations	1	(62,443)	(133,533)
Interest paid		(727)	(969)
Net cash used in operating activities		(63,170)	(134,502)
Cash flows from investing activities
Interest received		1,302	1,062
Net cash provided by investing
activities		1,302	1,062
Cash flows from financing activities
Loan repayments in year		(9,920)	(9,679)
Net cash used in financing activities		(9,920)	(9,679)
Change in cash and cash
equivalents in the reporting period		(71,788)	(143,119)
Cash and cash equivalents at the
beginning of the reporting period		587,708	730,827
Cash and cash equivalents at the
end of the reporting period		515,920	587,708

The financial statements were approved by the Board of Trustees and authorised for issue on 24th September 2024 and were signed on its behalf by: K Higgs – Trustee

The notes form part of these financial statements

The notes form part of these financial statements

36 C)

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024

brainstrust – Notes to the Cash Flow Statement for the year ended 31st March 2024

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

Net expenditure for the reporting period (as per the Statement of Financial Activities) Adjustments for: Depreciation charges Interest received Interest paid Decrease/(increase) in debtors (Decrease)/increase in creditors Net cash used in operations Analysis of changes in net funds At1.4.23 £ Net cash Cash at bank 587,708 587,708 Debt Debts falling due within1year (9,679) Debts falling due after1year (23,473) (33,152) Total 554,556	2024 £ (78,075) 867 (1,302) 727 22,976 (7,636) (62,443) Cash fow £ (71,788) (71,788) (243) 10,164 9,921 (61,867)	2023 £ (100,138) 867 (1,062) 969 (38,189) 4,020
		(133,533)
		At31.3.24 £ 515,920
		515,920
		(9,922) (13,309)
		(23,231)
		492,689

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 2023 – 31 March 2024

37

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

1. Accounting policies – continued

4. Investment income

Taxation

Investment income
	**2024 **	2023
	£	£
Deposit account interest	1,302	1,062

The charity is exempt from tax on its charitable activities .

Fund accounting

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

Restricted funds can only be used for particular restricted purposes within the objects of the charity . Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes . Further explanation of the nature and purpose of each fund is included in the notes to the financial statements .

5. RAISING FUNDS

Raising donations and legacies

statements 2. Donations and legacies Donations Grants from awarding entities Corporate grants and donations Gift aid tax recovered Legacies 3. Other trading activities Fundraising events Sale of ‘brainstrust’ items Sponsored activities Activities of partner groups	2024 £ 88,928 162,644 28,412 44,976 10,061 335,021 2024 £ 88,931 14,331 193,125 19,740 316,127	2023 £ 90,081 242,952 32,769 34,878 8,963 409,643 2023 £ 81,731 10,248 117,936 71,086 281,001 Fundraising fees Promotional expenses Other trading activities Trading costs and purchases Event costs Sponsored activities costs Aggregate amounts 6. Charitable activities costs Direct Costs £ Charity activities 630,834	2024 £ 14,745 39,679 54,424 2024 £ 7,580 8,393 12,348 28,321 82,745 Support costs (see note7) £ 2,659	2023 £ 11,077 31,318
				42,395
				2023 £ 4,755 5,941 9,612
				20,308
				62,703
				Totals £ 633,493

continued ...

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

38

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

7. Support costs

Support costs
Other resources expended Charity activities	Governance costs £ 14,287 2,659
	16,946

8. Auditors’ remuneration

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

10. Staff costs

Total gross salaries, benefits in kind and employers national insurance costs for the year ending 31st March 2024 were £459,090 (2023 – £483,632) .

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

Fundraising Charitable Activities Governance Other No employees received emoluments in excess of £60,000	2024 4 9 1 1 15	2023 4 9 1 1
		15

Auditors’ remuneration
	**2024 **	2023
	£	£
Fees payable to the charity’s auditors for the audit of the charity’s fnancial statements	3,000	2,700
Auditors’ remuneration for non audit work	2,480	1,821

9. Trustees’ remuneration and benefits

31st March 2024 nor for the There were no trustees’ remuneration or other benefits for the year ended year ended 31st March 2023 .

Trustees’ expenses

There were no trustees’ expenses paid for the year ended 31st March 2024 nor for the year ended 31st March 2023 .

continued ...

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

39

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

11 . Comparatives for the statement of financial activities

INCOME AND ENDOWMENTS FROM Donations and legacies Other trading activities Investment income Total EXPENDITURE ON Raising funds Charitable activities Charity activities Other Total NET INCOME/(EXPENDITURE) Transfers between funds Net movement in funds RECONCILIATION OF FUNDS Total funds brought forward TOTAL FUNDS CARRIED FORWARD	Unrestricted fund £ 409,643 209,965 1,062 620,670 59,218 620,392 12,468 692,078 (71,408) 2,563 (68,845) 273,874 205,029	Restricted funds £ – 71,036 – 71,036 3,485 96,281 – 99,766 (28,730) (2,563) (31,293) 430,371 399,078	Total funds £ 409,643 281,001 1,062
			691,706
			62,703 716,673 12,468
			791,844
			(100,138) –
			(100,138) 704,245
			604,107

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

12 . Tangible fixed assets

COST At 1st April2023and31st March2024 DEPRECIATION At1st April2023 Charge for year At31st March2024 NET BOOK VALUE At31st March2024 At31st March2023	Fixtures and fttings £ 1,905 1,605 103 1,708 197 300	Website £ 11,176 9,519 765 10,284 892 1,657	Totals £ 13,081
			11,124 868
			11,992
			1,089
			1,957

13. Debtors: amounts falling due within one year

Trade debtors Other debtors Prepayments Creditors: amounts falling due within one year Trade creditors Other creditors	2024 £ 16,356 6,773 31,606 54,735 2024 £ 9,831 22,572	2023 £ 1,000 39,462 37,249
		77,711
		2023 £ 10,832 28,964
	32,403	39,796
		continued ...

14. Creditors: amounts falling due within one year

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

40

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

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

Other creditors 16. Loans An analysis of the maturity of loans is given below: Amounts falling due within one year on demand: Other loans Amounts falling due between two and fve years: Other loans –1–5years 17. Leasing agreements Minimum lease payments under non-cancellable operating leases fall due as follows: Within one year Between one and fve years	2024 £ 13,309 2024 £ 9,922 13,309 2024 £ 26,810 29,045 55,855	2023 £ 23,473
		2023 £ 9,679
		23,473
		2023 £ – –
		–

continued ...

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

18. Movement in funds

At1.4.23 £ Net movement in funds £ Unrestricted funds General fund 205,029 (85,436) Restricted funds Fund A Fund E Fund H Fund I Fund J Fund L 713 82,258 27,039 286,960 2,108 – 2,254 920 224 2,671 (1,527) 2,819 399,078 7,361 TOTAL FUNDS 604,107 (78,075) Net movement in funds, included in the above are as follows: Incoming resources £ Unrestricted funds General fund 632,913 Restricted funds Fund A Fund E Fund H Fund I Fund J Fund L 2,254 2,019 362 3,872 3,169 7,861 19,537 TOTAL FUNDS 652,450	Transfers between funds £ 2,000 (2,000) – – – – – (2,000) – Resources expended £ (718,349) – (1,099) (138) (1,201) (4,696) (5,042) (12,176) (730,525)	At31.3.24 £ 121,593 967 83,178 27,263 289,631 581 2,819
		404,439
		526,032
		Movement in funds £ (85,436) 2,254 920 224 2,671 (1,527) 2,819
		7,361
		(78,075)
		continued ...

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

41

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

18. Movement in funds – continued

Comparatives for movement in funds

Unrestricted funds General fund Restricted funds Fund A Fund E Fund H Fund I Fund J TOTAL FUNDS	At1.4.22 £ 273,874 710 79,003 27,034 323,624 – 430,371 704,245	Net movement in funds £ (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

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

Unrestricted funds General fund Restricted funds Fund A Fund E Fund H Fund I Fund J Fund K 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 in funds £ (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 2024 – continued

18. Movement in funds – continued

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

Unrestricted funds General fund Restricted funds Fund A Fund E Fund H Fund I Fund J Fund L TOTAL FUNDS	At1.4.22 £ 273,874 710 79,003 27,034 323,624 – – 430,371 704,245	Net movement in funds £ (156,844) 4,820 4,175 229 (33,993) 581 2,819 (21,369) (178,213)	Transfers between funds £ 4,563 (4,563) – – – – – (4,563) –	At31.3.24 £ 121,593 967 83,178 27,263 289,631 581 2,819
				404,439
				526,032

continued ...

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

42

brainstrust – Notes to the Financial Statements for the year ended 31st March 2024 – continued

brainstrust – Detailed Statement of Financial Activities for the year ended 31st March 2024

18. Movement in funds – continued

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

Unrestricted funds General fund Restricted funds Fund A Fund E Fund H Fund I Fund J Fund K Fund L TOTAL FUNDS	Incoming resources £ 1,253,583 4,820 7,089 481 22,912 5,310 42,100 7,861 90,573 1,344,156	Resources expended £ (1,410,427) – (2,914) (252) (56,905) (4,729) (42,100) (5,042) (111,942) (1,522,369)	Movement in funds £ (156,844) 4,820 4,175 229 (33,993) 581 – 2,819
			(21,369)
			(178,213)

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 .

19. Related party disclosures

During the year the charity purchased services from Fitton Holman Creative Limited totalling £14,040 (2023 – £14,985) . 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, £nil (2023 – £3,960) for administrative use of their property .

The co-founder’s daughter, Leonora Bulbeck, supplied editorial services during the year to the charity totalling £1,700 (2023 – £2,100) at a commercial rate .

INCOME AND ENDOWMENTS Donations and legacies Donations Grants from awarding entities Corporate grants and donations Gift aid tax recovered Legacies Other trading activities Fundraising events Sale of ‘brainstrust’ items Sponsored activities Activities of partner groups Investment income Deposit account interest Total incoming resources EXPENDITURE Raising donations and legacies Fundraising fees Promotional expenses Other trading activities Trading costs and purchases Event costs Sponsored activities costs	2024 £ 88,928 162,644 28,412 44,976 10,061 335,021 88,931 14,331 193,125 19,740 316,127 1,302 652,450 14,745 39,679 54,424 7,580 8,393 12,348 28,321	2023 £ 90,081 242,952 32,769 34,878 8,963
		409,643 81,731 10,248 117,936 71,086
		281,001 1,062
		691,706 11,077 31,318
		42,395 4,755 5,941 9,612
		20,308

This page does not form part of the statutory financial statements

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

43

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

Charitable activities Medical grants and costs Patient support and staffng Salaries Travel Administration Offce rent & rates Fixtures and fttings Depn of website Support costs Governance costs Auditors’ remuneration Auditors’ remuneration for non audit work Insurance Other Bank loan interest Total resources expended Net expenditure	2024 £ 1,545 404,073 157,572 15,232 32,814 18,731 103 764 630,834 3,000 2,480 2,659 8,080 727 16,946 730,525 (78,075)	2023 £ 1,400 463,460 159,660 22,243 35,241 31,316 103 764
		714,187 2,700 1,821 2,486 6,978 969
		14,954
		791,844
		(100,138)

This page does not form part of the statutory financial statements

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

44

Get in touch

Helping you

Talk to our team 24/7 on 01983 292 405 , or email [e-mail] .

Helping us

Make a donation at brainstrust.org.uk/donate , call us on 01983 292 405 during office hours, or email [e-mail] .

Registration

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

Registered address

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

www.brainstrust.org.uk www.braintumourhub.org.uk

Regional office (north of England)

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

Declaration

The trustees declare that they have approved the trustees’ report above .

Signed on behalf of the charity’s trustees .

Signature:

Full name: K Higgs

Position: Trustee

Date: 24th September 2024

45 O

brainstrust trustees’ annual report and accounts: 1 April 2023 – 31 March 2024

brainstrust is a registered charitable trust – registered with the Charity Commission for England and Wales 1114634 044642. as Charity No . , registered with the Office of the Scottish Charity Regulator as Charity No . SC © brainstrust 2024.

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