2024-03-31-accounts

epilepsy society 202312024 Annual Report epilepsysociety.org.uk b¥

We are Epilepsy Society

~~The UK’s only charity transforming the lives of people with epilepsy through world-leading research, advocacy and care.~~

Epilepsy Society Chesham Lane, Chalfont St Peter Buckinghamshire SL9 0RJ epilepsysociety.org.uk

Registered charity: 206186 Company limited by guarantee: 492761

Group Financial Statements and Annual report for the year ended 31 March 2024

Contents

02 Chairman’s review of the year

04 Letter from the Chief Executive

06 Trustees’ Annual Report (Strategic Report and Director’s Report)

06 About Epilepsy Society 06 What we do 07 Structure 07 Charitable objectives, values and strategy 08 Our year in numbers

09 Research

09 Genomic research 10 Our research 11 Looking inside the brain to understand more about epilepsy 11 Case study: Daniel Pinchen

12 Medical

12 MRI 13 EEG 13 TDM Unit 13 Laser beam therapy 14 Changing lives… 15 Our medical progress

16 Care services

16	Night support
17	Log my care
17	Person-centred care
18	Phoenix Games
18	Tranquility garden
18	Phoenix Café
19	Our care services

20 Advocacy

• 20 Changing the law 21 Safe Mum, Safe Baby 21 Calm, Cushion, Call 21 Media work 22 Our advocacy 23 Campaigns 23 Me & My Shadow 23 Jake Lambert

24 Helpline and information

24 Expanded helpline service and introduction of webchat 25 External training 25 New epilepsy awareness-raising video

Fundraising

26

27 Marathon and running events 27 Purple Day 28 Corporate funding 28 Individual giving

Looking to the future

30

30	Looking to the future
32	Principal risks
34	Financial review
36	Engagement with stakeholders

Independent Auditor’s Report

40

• 44 Consolidated statement of financial activities

• 45 Balance Sheets 46 Consolidated Cashflow Statement 47 Notes to the Financial Statements

68 Trustees, officers and advisors

01

Epilepsy Society | Annual report 2023/2024 | Chairman’s review of the year

What does a good year look like for a charity in 2024? It is always important to reflect on the year in the context of the wider world. We are still in the grips of a cost-of-living crisis. The war in Ukraine has been met by conflict in the Middle East and in terms of home politics, there has been turbulence.

Kate Alcock, Chairman

I am pleased to say that the combined income from donations and legacies was £60,000 higher this year and I am confident that the increase in community and corporate fundraising is due in no small part to the amazing support of our team who are with our fundraisers every step of the way.

Yet, I’m ever amazed at how the Epilepsy Society continues to navigate choppy waters. The greater the challenge, the greater the response. And that is largely down to our loyal supporters.

Epilepsy is a constant in people’s lives. It has no respect for time or occasion. A seizure will be a seizure regardless of whether you are taking a holiday, enjoying a trip to the theatre or spending time with friends. In spite of war, economic difficulties and political turmoil, epilepsy remains a priority for those affected.

It’s easy to see the impact of cheering for our incredible Team Purple at big events such as the London Marathon. But it’s the support and encouragement that the team provides along the way, through months of training and fundraising, that really make the difference. And the messages of heartfelt thanks that pour in afterwards, speak volumes.

Our wonderful medics work tirelessly to optimise seizure control for their patients, to mitigate risk and to find that sweet spot where neither seizures or medication compromise quality of life. But it can be difficult and that is why I believe so many people stick with us on our journey to raise funds that will push forward the boundaries of research. Because where there is research, there is hope. And if there is hope, people will run, bake, walk, abseil or jump out of aeroplanes to turn it into promise for the future.

Of course, we are all at our best when faced with a challenge, and I have been impressed at how resourceful and determined the team at Head Office have been in looking for commercial opportunities to benefit the charity and grow our assets.

The team has worked closely with all the funders for care services to secure a rise in care fees that match inflation. This is about realistic reimbursement in today’s economy.

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I am sorry to say that these rises have not always been forthcoming. People who need our support cannot live on below-inflation funding, without suffering a decline in their quality of life.

And the same is true of our care staff. I am pleased to say that with careful financial management, we have been able to make a welldeserved pay award for our staff. Our reputation is built on the people who work at the Epilepsy Society, and it is right that when the Society benefits, staff should too.

We are always keen to maximise our services. And with this in mind have invested in two new pieces of cutting-edge equipment for our Therapeutic Drug Monitoring (TDM). These will allow us to remain at the forefront of drug monitoring, increase revenue and keep control of patient data without having to rely on a third party.

Similarly, we are now scanning more than 100 extra patients per month through our MRI, as we help to take the pressure off waiting lists at the National Hospital for Neurology and Neurosurgery.

I am cautiously optimistic that we are heading in the right direction, yet in spite of all efforts, we have still recorded a deficit of £1.5m. This is mainly due to insufficient and delayed payment of income and a continuing high level of spend on our elderly estate and elsewhere as inflation continues to bite, and we look to develop a part of our land and generate more income for research. Balancing the books is never easy or as scientific as we would like.

Away from the ledger, we have been working hard behind the scenes to ensure that our Memorandum of Understanding with our partners UCL and UCLH is robust, fit for the future and, significantly, for the benefit

of those we support. We have also been reviewing our Service Level Agreement with UCLH to ensure it is fully fit for purpose. We place great value on our unique tripartite partnership which ensures academic and clinical excellence, patient input and relevance of our medical research.

Like our supporters, I believe that research into epilepsy offers real hope for the future. So, I am pleased that we have established a new Research, Medical and Care Services Committee to focus our efforts in areas that are of most importance to our beneficiaries.

The brightest minds. The most incredible supporters. Together we will beat epilepsy.

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Epilepsy Society | Annual report 2023/2024 | Letter from the Chief Executive

I believe we should aspire to be the architects of our own future. Whether we are talking bricks and mortar or visions and strategies, we plan, we design, we amend, we are ambitious. And most importantly of all, we lay good foundations. Everything that we build is for the benefit of the people we support.

Clare Pelham, Chief Executive

We build from the ground up so that everything that follows has firm foundations. Firm foundations in benefitting people with epilepsy. And bold ambitions to make a better world for them.

This has been the cornerstone of everything that we have built at the Epilepsy Society, ever since our foundation in 1892 when pioneering neurologists revolutionised the treatment of people with epilepsy.

Today our ambitions are focused on making a sea change in the treatment of people with epilepsy. We want to accelerate the speed of research that will lead to seizure freedom for more people with epilepsy. We want to halve the number of deaths from epilepsy in the next 10 years. We want to more than double the number of people who have access to our worldrenowned epilepsy specialists.

We have recently had a timely reminder of just how solid the foundations of the Epilepsy Society were, and just how much they have been valued and, more than a century later, continue to be valued.

A lady from Detroit, Michigan in the US sent us a photo. She had taken possession of a beautifully engraved silver trowel that was presented to the charity on 6 May 1897 by the US Ambassador Thomas Bayard. The trowel was to commemorate the laying of the foundation stone for one of our very first homes for people with epilepsy.

But we must start from the ground up which, for us, means literally realising our dreams by developing half of our estate and turning our wealth into health.

Our planning application is awaiting determination from the local authority, but planning is a slow business and it is business as usual while we wait. We have other foundations to lay and challenges where solid foundations are perhaps not so obvious.

The historic trowel is so exquisite, it is more akin to something we might today use to serve a slice of wedding cake. But in every way, its symbolism and significance ring as true in 2024 as they did 127 years ago.

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The medicines supply chain is a point in kind. In the last year we have seen a worrying increase in the number of medication shortages in epilepsy. Our Helpline has been inundated with anxious callers who are desperate to get their prescriptions fulfilled. Our social media has been similarly besieged.

Our survey showed that 70% of responders had struggled to get their medication in the last year, with over half having to visit multiple pharmacies to find they could only have a fraction of their drugs.

The supply chain is broken because it doesn’t operate on firm foundations and we are determined that it should. We have been speaking with the Department of Health, the Government and the pharmaceutical industry.

And we have been raising the issue across the media. We are calling for an urgent review of the medicines supply chain. We want a more robust and resilient system so that people with epilepsy and other health conditions can guarantee their medication when they need it.

What makes me most proud is that we made a difference for the people we support. And that is fundamental to all our campaigns. Building on our success in securing Zach’s Law, this year we were again in Westminster laying foundations for a campaign that will certainly make a difference both to parents with epilepsy and to would-be parents.

Many of the commonly prescribed epilepsy drugs are linked to a risk of harm during pregnancy. But the right research could make pregnancy so much safer for both parent and child. We have campaigned at a moral and emotional level, but then we were asked to show how, as well as giving babies a healthier start in life, this research could save the Government money.

We commissioned the Office for Health Economics to write an economic analysis of the lifetime costs of a disability which we launched in Westminster. Now, as with our planning application, we await a response.

I know that all our supporters, volunteers and staff take real delight when we achieve progress with epilepsy. Sometimes, this is done quietly by months, even years, or negotiations behind the scenes. But sometimes it is done in the full glare of publicity. And so there were real whoops of delight and piles of cards and happy messages when we learnt that His Majesty The King had accepted the Patronage of the Epilepsy Society. It is a real testament to the charity and to people affected by epilepsy that the King has chosen to support a cause that meant so much to his mother, our late Patron Queen Elizabeth II.

When the US Ambassador laid his foundation stone in 1897, he recognised the value of a solid base for the future. More than 100 years later, we are no different. Many things change over the years — fashions, culture, attitudes, expectations. But, like Mr. Bayard and those who bore witness on 6 May, we still believe that society — and most importantly our Society — should be built on firm foundations, and should be ambitious to make the world a better place for those we support.

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Epilepsy Society | Annual report 2023/2024 | Trustees’ annual report

The Trustees are pleased to present their report for the year ended 31 March 2024 which provides a commentary on these results and the operations of the Epilepsy Society during the year, which are set out in the audited financial statements following this report. The report also acts as the Society’s strategic report and the Directors’ Report for the year.

Under section 17 of the Charities Act 2011, the Trustees have a duty to have due regard to the public benefit guidance published by the Charity Commission. During the year, the Trustees have acted in accordance with this requirement and they are satisfied that all the activities of the Society are for the public benefit.

About Epilepsy Society

Our vision is for a world where epilepsy is irrelevant and people with epilepsy lead the lives they want to lead.

Epilepsy Society is the UK’s leading provider of epilepsy services. Through our cutting-edge research, awareness campaigns, information resources and expert care, we work for everyone affected by epilepsy in the UK.

What we do

Research

Medical

Medical services at our Chalfont Centre provide the most sophisticated diagnostic tools and tailored treatments for people with drugresistant seizures.

Our world-leading research team is passionate about translating research findings into improving the lives of people with epilepsy. The ultimate goals of our current research are to spearhead personalised treatment and to incorporate genomic diagnosis into the NHS for people with epilepsy.

Care

We provide specialist residential care for about 116 people who, in addition to their epilepsy, may have an additional condition, such as a brain injury or a physical disability.

Advocacy

We are a voice for people with epilepsy, striving to push epilepsy up the political agenda and bring about change.

We operate a confidential helpline and webchat service offering help and support for anyone affected by epilepsy, and have a wealth of online information for people at any stage of their epilepsy journey.

Pioneering the treatment of epilepsy since 1892

We also provide training for individuals and organisations to improve their epilepsy awareness.

Our values:

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Caring, accountable,
improving, respectful and open
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Structure

The Epilepsy Society is a charitable company limited by guarantee. It is governed by its Memorandum and Articles of Association and it is registered as a charity with the Charity Commission (charity number 206186).

The Society has two wholly-owned subsidiaries — Epilepsy Enterprises Limited and NSE Facilities Limited. Epilepsy Enterprises Limited is the Society’s trading company and it carries on commercial activities, such as merchandising, with a view to raising money for the charity. NSE Facilities Limited was incorporated in 2000 to build the Gowers Centre and to manage the healthcare services provided by UCLH within it. However, the management of healthcare services is now being done directly by the Epilepsy Society, and therefore this subsidiary is effectively dormant and the only financial transactions relate to the depreciation of the property and some minor administration. The Boards of each subsidiary consist of two Trustees and the Society’s CFO.

Charitable objectives, values and strategy

The Society’s strategy is set by the Board of Trustees and they also agree the vision and objectives following discussions with stakeholders including the staff who work for the Society.

Our charitable objective

The Society’s charitable objective is to secure a full life for everyone affected by epilepsy and other neurological conditions. Under the Society’s constitution, we will try to do this by:

Public benefit

• promoting acceptance of people with epilepsy and other neurological conditions, and challenging discrimination against them;

The Charities Act 2011 requires the Society to have due regard to public benefit guidance published by the Commission in determining the activities undertaken by the charity. The Trustees confirm through this report that they have complied with this requirement. Research carried out and funded by the Society meets the Charity Commission’s test for Public Benefit. In addition, the application of the results of the research is not restricted by gender, ethnicity, religion, or ability to pay and in that respect the public at large benefit. Other services that the Society carries out in care, helping people through support and advice and providing medical services all comply with the public benefit test too.

• preventing the development of epilepsy and other neurological conditions;

• seeking effective treatments for epilepsy and other neurological conditions; and

• providing services to people with epilepsy and other neurological conditions.

Our values

We aim to fulfil this objective while meeting our values, which are being: Caring; Accountable; Improving; Respectful; Open, while putting the person with epilepsy at the centre of everything that we do.

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Epilepsy Society | Annual report 2023/2024 | Trustees’ annual report

our year in numbers

A further £1.3m invested into our research programme

5136 , contacts made to the Helpline via calls, emails and webchat

1 583 , MRI scans completed

4 602 , information resources sent out from the Helpline

Over

5.2m reach on Facebook and Instagram

1.5m visitors to our website

4184 ,

7 out of 7 of care services rated ’good’ by CQC

genomic sequences analysed, with a further 700 commissioned and analysis underway as at 31 March

18 690 ,

Therapeutic Drug Monitoring samples processed

102

awareness-raising training courses, delivered to just under 1,000 delegates

109

academic papers published by our researchers in conjunction with UCL

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Research

Genomic research

Genomics has vast potential to build our understanding of how some people are affected by epilepsy and to transform the way that we treat and care for them.

‘Reading’ a person’s DNA through genome sequencing could help us to determine the cause of some people’s seizures, their response to different types of medication and their

susceptibility to Sudden Unexpected Death in Epilepsy (SUDEP). Over time, this will help us to prescribe more personalised, targeted treatments and reduce the burden that epilepsy places on many people’s lives.

Our Genome Sequencing Programme has sequenced over 4,000 genomes from Society-sourced samples since it began.

Epilepsy Society | Annual report 2023/2024 | Research

Our research

We believe that

ARROW-CIRCLE-DOWN

Genomic data provides invaluable information to support high quality, tailored healthcare.

Genomic data should be available for everyone with epilepsy at the time of diagnosis.

To achieve this, we: ARROW-CIRCLE-DOWN

Will push forward research aiming to show the value of early genomic testing for as many people with epilepsy as we can.

Will promote the value of genomic testing for people with epilepsy to the neurological community and service providers.

Working towards this, we have: ARROW-CIRCLE-DOWN

Shown the value of whole genome sequencing in people with epilepsy who also have other health issues.

Shown that much more information can be gleaned from genomic data than the cause alone.

Commissioned sequencing of 700 more genomes, and analysed over 4,000 sequences from other sources.

In the next 12 months, we will:

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Obtain genome sequences for another 500 people with other types of epilepsy to show how useful genomics can be in different types of epilepsy.

Develop new ways of looking at genomic data, to extract even more information.

Merge genomic data with other information, such as brain imaging data, to increase the value of all the data.

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introduction

Looking inside the brain to understand more about epilepsy

Transcranial Magnetic Stimulation (TMS) is a pioneering, non-invasive technique that can explore brain activity in people with epilepsy.

Our research team is now combining TMS with electroencephalography (EEG) in order to investigate a larger area of people’s brains. This transformational research project has the potential to pinpoint which treatment options may be most effective for individual patients, giving hope for bringing more people’s seizures under control and reducing the risk of SUDEP.

٨ Case study Daniel Pinchen

Daniel had genetic screening as part of our project to screen over 1,000 people with complex epilepsy. He had his first seizure at 11 weeks old, and has spent most of his childhood and adult life in residential care.

Daniel was one of eight people who was diagnosed through the study with Dravet Syndrome, a rare and severe form of epilepsy. After several decades of uncertainties and unknowns, his parents, Chris and Marilyn, felt that “suddenly everything fell into place”. They have been able to learn more

about the condition and ensure that Daniel receives the right support. They have also undergone genetic testing themselves, which ruled out an inherited mutation and gave them the reassurance that the condition hasn’t been passed on to their other children and grandchildren.

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Epilepsy Society | Annual report 2023/2024 | Medical

Medical

MRI

We have Europe’s only MRI (magnetic resonance imaging) unit dedicated solely to identifying the causes of epilepsy at our Chalfont Centre site. The powerful 3 Tesla MRI scanner means that up to 70 per cent of people with epilepsy can have the cause of their condition identified.

In 2023/24, the MRI unit carried out over 1,500 scans, helping to bring many more people closer to understanding the root causes of their epilepsy and how to treat it most effectively.

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introduction

EEG

An electroencephalograph (EEG) is a test that helps with the diagnosis and management of epilepsy. It uses electrodes to record brain wave activity. As well as routine EEGs, Chalfont also offers ambulatory EEGs, usually over a 24-hour period, and ones which record brain activity overnight.

TDM Unit

Our therapeutic drug monitoring (TDM) service is a vital tool in determining the right level of epilepsy medication to control a person’s seizures most effectively. The groundbreaking unit tests blood and saliva samples for levels of 24 licensed anti-seizure medications.

In 2023/24, over 18,000 samples were processed by the TDM unit. And these aren’t just coming from humans; we also deal with veterinary referrals to help get the balance of medication right for animals with epilepsy, particularly dogs.

Professor Ley Sander, our Director of Medical Services, said: “This minimally invasive form of neurosurgery could be groundbreaking for some people with brain lesions whose seizures do not respond to conventional treatment options, including more invasive epilepsy surgery.

We are particularly proud that the sophisticated navigation system which guides this pioneering surgery was developed at the Epilepsy Society’s MRI unit.”

Laser beam therapy

Our MRI unit played a central role in developing “game-changing” laser beam therapy that will help to reduce seizures in some people.

“It will make surgery safer and faster and dramatically cut the recovery period for individuals.

Laser Interstitial Thermal Therapy (LITT) involves inserting a 1.5mm probe with a laser tip through a tiny hole in the skull. The surgical team use MRI scanning to navigate through the brain, and the laser reaches and destroys the epilepsycausing brain tissue by heating it from the inside.

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Epilepsy Society | Annual report 2023/2024 | Medical

Changing lives…

~~After going to the Epilepsy Society, amazing things started to happen. Now I just want to get to the Paralympics and get on that podium.”~~

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Evan’s
story
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Evan Molloy was diagnosed with epilepsy at the age of four and, from around the age of 13, his seizures got steadily worse . He had big ambitions to represent Team GB at judo, but found himself in a dark place as his seizures weren’t well controlled, he was spending time in and out of hospital and not sleeping well.

Things changed for the better when Evan was referred to our Chalfont Centre, where clinicians were able to pinpoint the part of the brain his seizures were coming from and prescribe the right medication to get things back under control. He’s now seizure free, and looking forward to the Paralympics in Paris!

Emma Griffiths says the Epilepsy Society has been her ‘light in so much Emma’s darkness’, helping her to manage her story condition and live independently.

Her first tonic clonic seizure in her late teens ‘turned her life upside down’, but she credits her ‘amazing consultant’ with helping her to better understand epilepsy and its day-to-day impacts. She’s now been seizure free for over five years, and has thrown herself into raising epilepsy awareness and supporting the charity, even raising £2,000 through a sky dive!

In 2024, Emma was delighted to be chosen as our ‘hand in history’, having a cast made of her hand for a special donor wall installation at University College London.

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Conor’s
story
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Conor Holgate had three cardiac arrests at the age of 21. These left him in a wheelchair and experiencing continuous seizures, thought to be caused by a lack of oxygen to the brain.

Conor was referred to our Chalfont Centre, where he was diagnosed with epilepsy and given the right medication to bring his seizures under control. He said: “I am now out of my wheelchair, back at work and, best of all, enjoying life with my three young children. The Epilepsy Society gave me back my life.” Conor is shown here with two of his children.

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introduction

Our medical progress

We believe that ARROW-CIRCLE-DOWN

To achieve this, we: ARROW-CIRCLE-DOWN

Working towards this, we have: ARROW-CIRCLE-DOWN

In the next 12 months, we will:

ARROW-CIRCLE-DOWN

Research-based personalised treatments will transform the lives of people with epilepsy, and reduce the burden of epilepsy to the individual and society. It will also reduce pressures on the NHS by decreasing the number of people with chronic epilepsy symptoms.

Will revolutionise the investigation and treatment of forms of epilepsy through the cutting edge application of medical tools like genotyping, high resolution imaging and analytic pharmacology. This will ensure those with the most complex forms of epilepsy get an accurate diagnosis and that the correct and most effective management pathway is implemented at the earliest opportunity.

Enabled over 4,500 people with epilepsy to be seen and assessed, and carried out over 1,500 highresolution MRI brain scans to look at the structure and function of the brain to guide the treatment.

Performed over 18,000 drug assays to guide the management of the medication people use to treat their epilepsy. We have also added new medications to our repertoire of assays.

Continue to invest in and further develop our MRI imaging centre and our drug monitoring laboratory so they can continue their pioneering work.

Deploy new equipment such as a new laboratory information management system to increase the capacity by allowing higher throughput.

Add additional drug assays to our repertoire.

Implement cardiac ultrasound for the monitoring of people requiring it.

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Epilepsy Society | Annual report 2023/2024 | Care services

Care services

Night support

In September 2023, we introduced a new waking night detection system across our care homes, offering a robust layer of further safety for people who we support.

The Adaptive Care acoustic monitoring system enables higher rates of detection of seizures and in turn a faster response from staff to offer support or medical intervention, if it’s needed.

Night-time can be a high-risk area of support for people affected with epilepsy, as they are in their individual bedrooms rather than communal areas, and the risk of Sudden Unexpected Death in Epilepsy is higher when people are sleeping. Adaptive care means continuous remote monitoring rather than regular in-person visits.

Since its roll-out, the new system has helped to detect night seizures for the first time in three people who we support, enabling us to tailor care and treatment plans to their needs. Staff have also been able to attend quickly to help people if they fall in the night.

But perhaps the most ringing endorsement of the new technology came from 95-year-old long-time Chalfont resident Cybil, who was delighted by the prospect of more “peace and quiet” overnight!

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Log my care

In March and April 2024, we rolled out a new digital tool in our care homes that revolutionised the way that our support workers record information for the people they support.

The new system, provided by Log My Care, aims to streamline the recording process, allowing staff to easily log activities, medications and incidents in just a few taps on a mobile device on the go. Staff using Log My Care can also upload photos and videos, facilitating seamless hand-overs and more detailed notes.

Introducing Log My Care has made things much easier for our support workers, as they have each been given a dedicated work mobile where they can log information on their shift, rather than needing to fill out cumbersome paperwork. In the future, we also hope to provide updates to people’s families via the new system.

Person-centred care

We support about 116 people in our residential, nursing and supported living services. All of them have epilepsy, but in other ways each person is very different.

A person-centred approach means providing people with the support that places their needs, preferences, goals and overall wellbeing at the core of the care process. It is moving away from a one-size-fits-all approach and focuses on the unique needs and individuality of each person.

It can take time to really establish what a person wants, and it’s also important to be flexible and understand that their needs can change from day to day.

People who we support have been able to make decisions about their lives through this approach. For some, this has been small changes such as deciding what time they want to get up or go to bed, while for others it is choosing a holiday, the destination and accommodation and who they would like to accompany them.

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Epilepsy Society | Annual report 2023/2024 | Care services

Phoenix Games

It’s been a good year for our Boccia team! The players, who all live at the Epilepsy Society, have travelled far and wide across the South of England in pursuit of sporting glory, even adding a trophy or two along the way.

Boccia is an attack and defend game similar to bowls, played by individuals or in teams of three. Its origins date back thousands of years, and it’s thought to have been played by Emperor Augustus, Hippocrates and Galileo.

Two highlights this year include the Epilepsy Society team taking the Aylesbury Cup and coming a close second in the Boccia England League’s South region. Success all comes down to the dedicated team, as well as to team coach Graham Judge, and many support workers who help with driving when the team goes on tour!

Tranquility garden

July 2023 saw the opening of our amazing new nature trail in the grounds of our Chalfont Centre site.

Created thanks to the support of the Family and Friends of Epilepsy Society group, the new space offers a beautiful and peaceful setting to spend time with friends and colleagues or just to enjoy some quiet reflection surrounded by nature.

The trail was officially opened by local chef Anthony Worrall Thompson, at an event attended by over 200 people. New features include an activity shed and additional flower beds that have been added over time. The area has also played host to seasonal illuminations for residents and staff.

We continue to be hugely grateful to all of the volunteers and donors who have made the area a beautiful place to be.

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Phoenix Café:
where everyone
is welcome.
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Phoenix Café

May 2023 saw the grand re-opening of the Phoenix Café at our Chalfont Centre site. After a five-month hiatus, the café was back in business, following extensive refurbishment and work to address subsidence in the outdoor area.

The purple ribbon was cut by children’s writer Thomas Leeds, whose life was turned upside down following a brain injury that wiped his memory and left him with epilepsy.

Our café is a welcoming hub at the centre of Epilepsy Society life, bringing together those who live here, work here and our neighbours from Chalfont St Peter. We’re very grateful to Café Manager, Kate Lamb, and a team of dedicated volunteers who have worked hard to see it go from strength to strength since its reopening.

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introduction

Our care services

We believe that

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To achieve this, we:

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Working towards this, we have: ARROW-CIRCLE-DOWN

In the next 12 months, we will: ARROW-CIRCLE-DOWN

Epilepsy Society’s role is to offer outstanding health and social care.

People should be empowered and enabled to live the fullest life possible.

We are ambitious for people not to be defined by their epilepsy and our focus should be on their abilities, gifts and skills.

Harness the unique expertise at Epilepsy Society with a co-ordinated approach from our medical expertise, neurologists, world leading research and social care knowledge to allow those with complex epilepsy access to an outstanding, fully integrated model.

Provide supported living options and pathways to the community where appropriate.

Are developing models that lift the bar, creating excellent personcentred care that measurably improves the outcomes for the individual.

Developed our Complex Care strategy for supporting people at the Chalfont site and the Ordinary Lives strategy, where we will develop pathways for people to live in supported living community settings.

Delivered a full digitalisation programme including waking night acoustic monitoring and digital support planning.

Invested in our workforce through international recruitment, learning and development platforms, Trainee Nursing Associates and specific leadership programmes for key colleagues.

Work in partnership with a developer, commissioners and Housing Association to develop a pilot supported living service based in Aylesbury.

Develop our Complex Care offer for people living at Chalfont through increased partnership working in medical and care services.

Maintain our overall ‘Good’ rating across all of our registered services with CQC and strive for Outstanding.

Seek to measure the impact for individuals through Quality of Life Indicators.

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Epilepsy Society | Annual report 2023/2024 | Advocacy

Advocacy

Changing the law

There’s never a dull moment in the Epilepsy Society’s External Affairs team, and this year was no exception, with colleagues in public affairs and campaigns working hard to keep epilepsy firmly on the agenda across the political parties.

In a busy year, one particular highlight was when the Zach’s Law campaign, spearheaded by the Epilepsy Society working alongside Zach Eagling and his family, was enshrined in law through the Online Safety Act in September 2023. Under the new legislation, anyone in the UK who sends or shows online flashing images to a person with epilepsy could face up to five years in jail.

As part of a Westminster whistle-stop tour in February, Zach was honoured for his campaigning efforts with a visit to Number 10 along with meetings with then Prime Minister, Rishi Sunak and Sir Keir Starmer.

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Safe Mum, Safe Baby

Our Safe Mum, Safe Baby campaign is calling for £20m investment into research exploring epilepsy medications that are safer for unborn babies if taken during pregnancy.

The campaign gathered pace early in 2024 with our reception held at the House of Commons and attended by a wide-ranging audience of cross-party MPs, patient advocates, academics, media, Epilepsy Society supporters and representatives from charities and industry. Speakers included the Patient Safety Commissioner, Dr Henrietta Hughes, and Lauren, a mother with epilepsy who bravely shared her experiences, hopes and fears.

Calm, Cushion, Call

We’re on a mission to make sure that anyone who sees someone having a seizure remembers our simple seizure first aid advice: Calm, Cushion, Call.

In September 2023, a corner of Parliament turned purple as we hosted a Calm, Cushion, Call drop-in event for MPs across the parties. The stars of the show were Jo Hardiman and Teni Majekodunmi, young women who came to the event to share their experiences of living with epilepsy.

The event was a big success, with many of the MPs who attended welcoming the chance to boost their epilepsy awareness, and promising to share our advice on their social media channels and with constituents.

Media work

Epilepsy hits the headlines regularly thanks to the tireless efforts of our small but busy media team. Just a few highlights include widespread coverage of our campaigns activity, and mainstream broadcast appearances for our Chief Executive, Clare Pelham and people with epilepsy on topics including medication shortages, health advice and real-life stories.

3.62bn potential news reach

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Epilepsy Society | Annual report 2023/2024 | Advocacy

Our advocacy

We believe that ARROW-CIRCLE-DOWN

People with epilepsy should be both listened to and be heard. We want to increase public understanding of epilepsy and the impact of living with seizures.

People with epilepsy should lead the life they wish to lead, free from stigma and with the best possible seizure control.

To achieve this, we: ARROW-CIRCLE-DOWN

Provide a unique epilepsy Helpline that offers emotional support and information about the condition.

Strive to increase public understanding of epilepsy in the community and the workplace, making sure everyone is aware of our critical seizure first aid message – Calm, Cushion, Call.

Amplify the voices of those with epilepsy nationally and politically so that people with epilepsy are given the support they need.

This year, we have: ARROW-CIRCLE-DOWN

Successfully campaigned to introduce a new law to protect people with epilepsy online.

Extended our Helpline opening hours to include an extra evening and weekends. Introduced webchat to increase the accessibility of the service.

Launched a new epilepsy awareness film for sharing in the community and the workplace. Calm, Cushion, Call has been adopted by St John Ambulance.

Next year, we want to:

ARROW-CIRCLE-DOWN

Increase awareness of Sudden Unexpected Death in Epilepsy to support our goal of halving epilepsy deaths in the next 10 years.

Press for an urgent review of the medicines supply chain, so that people with epilepsy always receive their vital medicines on time and in full.

Enable people with epilepsy who damage their teeth during a seizure to receive free dental treatment to repair them.

Secure funding for research into risks linked with anti-seizure medications during pregnancy.

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This year’s key campaign, Fix It 4 Free, is calling for free dental repairs for anyone who damages their teeth as a result of a seizure. Over two-thirds of people responding to our survey said they had broken or chipped teeth as a result of seizures, and 58 per cent struggled to afford dental treatment.

Jake Lambert

We have been very pleased to work with comedian, Jake Lambert to raise awareness of epilepsy. Jake, who supports comedy legends Michael McIntyre and Jack Dee, has epilepsy himself, and takes every opportunity to de-stigmatise the condition through comedy. He is quick to point out that he laughs at his own epilepsy, not other people’s, and stresses epilepsy isn’t funny. We were pleased to share his story in the national media and to welcome Jake to the Chalfont Centre to find out more about our world-leading research.

The campaign gathered momentum and media coverage over the course of the year, with nearly 25,000 petition signatures and many fruitful stakeholder meetings behind the scenes. After the 2024 election, we plan to ramp up our lobbying efforts to translate our calls into action.

Me & My Shadow

Our Me & My Shadow scheme encourages women with epilepsy to ‘think big’, by giving them the opportunity to spend a day shadowing leading figures from media, politics, sport, health and business.

Launched in National Epilepsy Week, the 2023 scheme featured participants learning from experts in their field including MPs Jess Phillips and Caroline Nokes, Patient Safety Commissioner Henrietta Hughes, and senior staff from X (formerly Twitter) and pharmaceutical company UCB. Two young women even had a studio tour and a turn in the newsreader’s chair at ITV Meridian.

The scheme is designed to allow women with epilepsy to learn more about the career opportunities available to them from senior women who have succeeded in their chosen fields.

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Epilepsy Society | Annual report 2023/2024 | Helpline and information

Helpline and information

Expanded helpline service and introduction of webchat

Our confidential helpline offers anyone affected by epilepsy a chance to be listened to and receive emotional support and up-to-date information from trained helpline operators.

This year we built on the success of the service, and gave people more ways to speak to us and get support at a convenient time for them. We expanded our operating hours, and introduced a webchat service following a successful pilot. Over the year, we were able to help people via over 5,000 calls, emails and messages.

5,136 contacts made to the Helpline via calls, emails and webchat

4,602 information resources sent out from the Helpline

102 awarenessraising training courses delivered to almost 1,000 delegates

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External training

New epilepsy awarenessraising video

We run training courses for people wanting to build their understanding of epilepsy and how to manage seizures, as well as providing training for administering emergency medication. Our courses are run both in-person and online by qualified nurses and experienced trainers.

We hosted over 100 courses in 2023/24, attended by nearly 1,000 people. Highlights included:

• Prison training for inmates at the request of a charity, with plans to arrange more in future

• Online training to around 130 employees of UBS/ Credit Suisse

We were delighted to launch our short film, “Epilepsy — it’s more than just seizures” ahead of National Epilepsy Week 2024. The 20-minute movie showcases the experiences of people with epilepsy, explores the impact of the condition, and offers an on-site snapshot of what we’re doing to support people through research, advocacy and care.

• Delivering a course for a housing association’s staff, then a follow-up for residents and service users.

• Running a bespoke online session for higher education disability advisors.

• Going global for the first time, delivering training for learning disability nurses at a hospital in Hong Kong.

Dean Misir saw a 14-year-old boy have a seizure as he was leaving the gym. Fortunately he had completed one of our epilepsy training courses just two weeks earlier, and could support the boy and his family. He said:

The film was shared widely on our digital and social channels, and we encouraged people to host ‘lunch and learn’ screenings to boost awareness of epilepsy in community groups and workplaces.

~~Epilepsy is nothing to be frightened of. The more people that know how to support people with epilepsy, the safer they will be.”~~

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Epilepsy Society | Annual report 2023/2024 | Fundraising

Fundraising

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ۋ Purple power at the Epilepsy Society on Purple Day, 26 March

Marathon and running events

Marathons and running events are an incredibly important source of income for the Epilepsy Society, and every year we’re in awe of the inspiring individuals who choose to support us as a charity close to their heart. Whether they’re running in support of or in memory of a loved one with epilepsy, or have the condition themselves, we’re hugely grateful for all their efforts.

In the 2023 London Marathon, 68 runners took part on our behalf, raising a record-breaking £138,000. And there were many more marathons and half marathons taking place nationwide, with runners pounding the pavement in purple, cheered on by friends and family.

Four years since its inception, Challenge 100 is proving to be a huge success, as it gives our fundraisers the flexibility to run 100 miles in the first 100 days of the year, in whatever ways work best for them. In 2024, over 900 people took part, raising a record £113,500.

The coming year is full of exciting event opportunities for our supporters, with new events such as the London to Brighton Bike Ride now included in our calendar.

Purple Day

Purple Day is an internationally recognised awareness and fundraising day for epilepsy, which takes place on 26 March every year.

In 2024, our main goal for Purple Day was reaching more people and raising significant funds through the appeal, and we achieved that in spades. We encouraged our stakeholders to share our seizure first aid advice, placed national media coverage on our campaigns and supporter stories, and started conversations with our follower base on what they wanted people to know about epilepsy.

We reached five times more people than the previous year on our social media channels, and engagement with our content increased tenfold. And there was much to celebrate in terms of stakeholder engagement, with 40 MPs interacting with us and many corporate partners sharing support.

Alongside our social media successes, we ran an appeal encouraging community fundraisers to support our work. As always, our supporters’ generosity and dedication blew us away with over £47,000 raised. One highlight from our community fundraisers was Tilly, who hosted a breakfast that raised an incredible £5,000. The appeal has really resonated with our audiences and given us a great base to build on for future years.

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Epilepsy Society | Annual report 2023/2024 | Fundraising

ۋ When Live Innovation Solutions won a football charity event, they donated all proceedings — £3,840 — to the Epilepsy Society. What champions!

Corporate funding

Corporate fundraising offers a crucial pillar of support for the Epilepsy Society, and we count ourselves lucky to have long-standing partnerships with a wide range of companies. Alongside funding, these partnerships help to boost brand visibility and epilepsy awareness among audiences who we may not otherwise be routinely reaching. And there are benefits from both sides, as when a company supports a charity it can enhance their image and strengthen employee morale.

Recent highlights include teaming up with the Oakman Inns group, which raised almost £30,000 over four years through making a 25p donation on every Porchetta meal sold. And we’re very grateful to Ascot Underwriting, who visited us to present a £10,000 cheque for the Amelia Roberts fund.

We have many exciting partnerships and activities planned over the coming year, with more and more companies interested in collaborating and supporting this important funding stream.

Individual giving

Individual giving relates to any donations made by one person outside of fundraising events. At the Epilepsy Society, this covers areas including one-off donations, legacy and in memory giving, payroll giving and donating to specific appeals.

Our team runs two major appeals each year: one in the lead-up to Christmas and one pinned around Purple Day in March. This year’s Christmas appeal encouraged supporters to help fund genetic research that could lead to personalised treatments for epilepsy, and raised £42,000.

A highlight for the team new to this year was its work with Octopus Legacy on popular free wills campaigns in October and March. And gifts in memory of people, or marking special days like birthdays and weddings, raised an impressive £130,000.

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ۋ Celebrating the running total of our 900 amazing Challenge 100 participants, before we reached the final total of £113,500.

The Society has its own fundraising team who support fundraisers in the community, obtain donations from individuals and make applications to companies, trusts and foundations. The Society only puts on small scale events of its own and generally does not employ professional fundraisers or commercial participators.

The Society follows the Fundraising Regulator’s Code of Fundraising Practice, aspires to apply the highest standards in its fundraising activities and is a member of the Chartered Institute of Fundraising. Our code of conduct for the Society, or its supporters who are fundraising, takes all reasonable steps to protect vulnerable people and members of the public from intrusion into their privacy, persistent requests and undue pressure.

We received four formal complaints about our fundraising activities during the year. All feedback is taken very seriously by the charity and the complaints have been resolved sensitively according to our complaints policy and procedures.

If you would like to make a donation, go to epilepsysociety.org.uk/donate

Or to join one of our fundraising events, go to epilepsysociety.org.uk/fundraising-events

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Epilepsy Society | Annual report 2023/2024 | Looking to the future

Looking to the future

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The years ahead represent some of the most exciting we have faced in our 132-year history. As we wait for news on our planning application, we feel that we are on the cusp of realising our ambitious and forward-thinking vision, maximising the potential of our Buckinghamshire site and enabling us to support, champion and transform the lives of even more people with epilepsy.

We’re immensely fortunate to have 300 acres at our site in Chalfont St Peter. We have been based here since we were first founded, as a place for people with epilepsy to create a community, tend the land and reap the benefits of a rural way of life in 1892. But our mission and circumstances have changed immeasurably since those early days, and unfortunately maintenance for the rambling site, including many dilapidated buildings, is costing us close to £1 million a year.

In submitting our planning application to develop just under 40 per cent of our site, we are grasping a unique opportunity to unlock the wealth in our land and secure the future of the Epilepsy Society in Chalfont St Peter for generations to come. The plans include boosting local housing supply with 975 private and affordable homes, as well as provision for a new school, local shops and enhanced sports facilities.

Our proposal could generate more than £100 million in income that will act as a catalyst to revolutionise the treatment of epilepsy for 630,000 people across the UK. It would enable us to up-end current scientific thinking, combining established practices, such as imaging and genomics, with innovative approaches including individual avatars that would enable novel treatments to be trialled in a computer rather than in the person.

The proposal would secure around 400 existing jobs as well as creating 190 new positions spread across the charity, additional research facilities and more widely, including 100 new researchers.

To realise the significant potential of this vision and make the most of data and technologies available, we need to expand our facilities and grow our research team.

If our application is approved, we will be able to increase our research capacity with new facilities, state of the art equipment, a central meeting space that fosters collaboration between researchers, clinicians and scientists, and a dedicated research-led Therapy Centre. Through our world-leading facilities, we would be helping to lead the UK “science superpower” surge.

While we wait for an update on our application, we are under no illusions that conditions continue to be difficult for ourselves and other charities. While our fundraising fortunes have picked up since the pandemic, this is still playing out against a challenging backdrop, primarily due to the cost-of-living crisis and continuing global conflicts.

However, we feel very positive about what the future holds, and feel we are getting closer day by day to a world where epilepsy is irrelevant, and people with epilepsy lead the lives they want to lead.

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Epilepsy Society | Annual report 2023/2024 | Looking to the future

Principal risks

The principal risks and uncertainties to which the Society and Group are exposed are very similar and managed through the same processes. The major strategic risks, that is those that have the potential to adversely impact the Group in achieving its future strategic objectives, are listed below. They are identified, classified, managed and reported on. The most effective controls to manage the risks are identified and plans to mitigate the risks to ensure the furtherance of the Society’s objectives are established and implemented. During the year, we purchased a bespoke integrated risk and assurance platform supplied to us by BDO called Rhiza. In March 2023 we transferred the principal risks from the master word document into the platform. The system went live on 21 March 2023 and risk owners have access to the system which has enabled them to update their actions.

Quality of care provided across some or all client stakeholders falls significantly below required standards — our uppermost priority as a charity is ensuring that the people we support, as well as our staff and visitors, and contractors are kept safe. We appreciate that the risk of harm and injury cannot be eliminated in its entirety. We manage the risk that exists by ensuring a robust and rigorous adherence to regulatory standards, the law and legal procedures to safeguard people, as well as by modelling best practice. Risk management is embedded as part of our everyday processes. We also conduct lessons learned reviews and commission quality assurance audits to improve our practice and compliance with CQC regulations and assessment (PAMMs). The quality audit programme for Care Services has been expanded and plans are in place for mock CQC inspections from PK Consulting in April 2024. Processes, policies and procedures supported by an internal control system have been strengthened including appropriate insurance policies which now includes medical malpractice cover. The Society has embraced digital and technological advancements in service delivery including technological improvements across such as acoustic monitoring, time and attendance, care planning and medicines management.

There is executive oversight by the Health and Safety Committee and trustee oversight has been strengthened by the creation of a new Board sub committee — the Research, Medical and Care Services Committee.

Insufficient funding to continue current and future

operations — financial management is a key element of the Trustees’ responsibilities, as is ensuring the long-term financial viability of the charity. Like many others, the charity has been impacted by the continuing cost of living crises exacerbated by high inflation and economic downturn. To ensure the Society’s longer term financial sustainability and cushion the charity from the impact that current and future financial challenges may have on its operations, we have sought to embrace technological advancements, source additional funding for research and renegotiated the terms of existing contracts and grants to reflect the increased costs of operation. The charity is also being more innovative and maximizing alternative business development opportunities while conducting longer term financial modelling with scenario planning for Business As Usual and the success of the land development application. We have fostered a collaborative response to emerging risks or crystallised issues

and increased investment (time, money, people) and more risks to be taken in our fund-raising activity. In our financial management we have instilled greater transparency to enable a shared sense of common purpose amongst all staff. There is regular evaluation of attraction, recruitment, retention and development strategies to continuously optimise retention of staff, reducing agency and recruitment costs. Trustees are closely monitoring the risks that exist and may materialise, particularly those associated with the land development application through the Finance Committee and Trustee Board, and regular meetings of the Estates Working Group.

Failure to attract, retain and develop sufficient and suitably qualified talent — this applies to staff in all areas, but particularly in care, where there is a shortage of suitable people across the sector, and in research, where we need highly trained professionals to progress work in areas such as genomics and who are much in demand across the various research sectors. To mitigate the risk of potentially unsafe staffing levels, particularly in our care services, we use a mixture of bank and regular agency workers in those services with high volume on vacancies. We have put a strong, cost-effective, high quality agency network in place to take up any temporary shortfalls in staff availability. To retain and attract high quality staff we have: a competitive pay and benefits offer; have targeted smart and quick recruitment and induction processes; have fostered proactive career developments and internal opportunities; have a strong programme of statutory and mandatory training in place; and have offered staff flexibility in working times, locations and frequencies and benefits offer outside of pay (e.g. salary finance).

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We have also engendered employee welfare and well-being and professional psychological safety as part of what we do.

A serious breach of cyber

security — safeguarding and upholding the Society’s data and the integrity of its data is of paramount importance, not least due to the amount of highly sensitive data the Society handles in its delivery of medical services and social care services. Cyber risk poses a real and ever-increasing threat against the charity’s operations. To guard the charity against a cyberattack, and to mitigate the risk of cyber and digital security failure, the charity has strengthened its policies and procedures and focused on their management, monitoring and enforcement. An Artificial Intelligence (AI) Policy has been initiated with guidelines for the use of AI tools at the Society. The emphasis is on the potential risks associated with AI — not disclosing confidential information, adhering to the code of conduct, human involvement in decision-making, verifying AI output, and respecting copyrights. This will be monitored. We have increased our suite of insurance policies to cover cyber risk. Cyber Essentials Plus certification has been renewed. A number of internal controls have been created to enhance digital security including remote access controls with secure connections, firewalls and automatically updated antivirus software and e-mail/internet filtering, restricted end user software installations, IT equipment asset tagging and encryption deployed to laptops and smartphones.

Failure to deliver the Society’s strategic objectives across the three pillars of care, advocacy and research — trustees are responsible for the strategic direction of the charity, whilst its implementation has been

delegated and devolved to executive directors. To ensure that the Society is focused on what is appropriate to the improvement of the lives of those with epilepsy, we regularly consult and collaborate with those affected by epilepsy as well as with other charities and research bodies. We aim to expand the search for, and secure, additional funding to support existing and future research and advocacy work, with fundraising milestones to track progress. We have also strengthened our engagement with key political and other stakeholders and built partnerships. We often ask ourselves are we providing the space for our senior leaders to try new things and is there the right culture to back that up? Are we properly measuring impact? In response, we emphasise learning and improving over playing safe in assessments and appraisals, which has been backed up by the launch of a new appraisal system. To ensure that the Society’s vision becomes reality, to drive our strategy and feed into the upcoming Change Management Programme , the charity develops actions and implementation plans that are subject to evaluation and ongoing monitoring by trustees through Working Groups, and at both Committee and Board level. The Society has embarked on a Change Management Programme to give focus to creating the right culture within the expanded charity.

The land development application is not successful and negatively affects longevity and ability to have a real impact for people affected by epilepsy — to ensure that the charity is in a stable position to continue to deliver its services and further its objectives, it is seeking to utilise its land assets to support the delivery of the charity’s purposes. In the event that the application is unsuccessful the charity has sought to develop a plan to enable it to manage BAU finances as well as possible for

as long as possible. A robust and comprehensive project plan has been implemented and is being closely monitored and managed from a risk management perspective to provide the best possible chance of success to the application. The Society continues to receive expert advice from experienced external firms and King’s Counsel. The Estates Working Group provide knowledgeable support and guidance. Particular care is being taken to ensure that the charity partners with the right organisation to see the application and development through.

The land development application is successful, but the Society fails to be prepared and take full advantage of the opportunities afforded — the charity believes that a successful planning application will transform the lives of thousands of people with epilepsy across the UK, revolutionising their treatment and also providing exciting new housing opportunities for people living in Chalfont St Peter where it is based. However, to optimise the likelihood of this occurring and make best use of our funds, we have developed a detailed business plan and a headline implementation programme, got trustees involved through the Estates Working Group and commissioned architects and shared their initial designs with the local authority. Work on the Research Strategy has progressed and is on course to be in place from Spring 2024. A Change Programme Manager was appointed at the start of 2024.

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Epilepsy Society | Annual report 2023/2024 | Looking to the future

Financial review

2023/24 financial year saw a slight improvement in our bottom line, before gains or losses on the defined benefit pension scheme, with a reduction in deficit from £1,512k in 2022/23 to £1,367k. The deficit continues to include non-operational costs like the land development application, contributions to the pension scheme and the high maintenance costs of the aging estate.

We saw another year of strong growth in the income levels for our care services, increasing from £12.3m to £13.3m, as we continued the work with commissioners to fund the increase in costs arising from salary growth and inflation. Income from medical services and help, information and advocacy was up by 8%, from £1,700k to £1,840k; but voluntary income fell from £3.4m to £2.9m, due mostly to the grant from UCB coming to an end.

Expenditure

Our underlying cost base remains carefully managed, and although our overall expenditure increased from £19.5m to £20.8m, this was driven in the main by the increase in direct costs of care delivery from £9.2m to £10.1m, driven by the National Living Wage increase effective 1 April 2023.

Our overall wage bill grew from £9.1m to £10.4m, on a very similar year-onyear level of headcount (down from 325 to 319 for the full year average).

During the year we spent a further £1,200k (2023: £2,800k) from the designated reserve set up in 2019 from the sale of land to Audley developments, see note 17 for more details.

Funds and reserves

In line with Charity Commission guidance, the Trustees aim to have an appropriate level of reserves to allow the Society to continue to operate through temporary reductions in income levels or increases in costs. To help meet that aim the Society has a reserves policy, approved by the Board, which sets minimum levels of reserves.

The defined benefit pension scheme liability moved very little in 23/24, from £3,730k to £3,761k; see note 20 for details.

Income

Total income for the Society was up 5.4% (2023: 8.0%), from £17.9m to £18.9m, driven mainly by the increase in our fees for delivering commissioned health and social care services. The fall in donations and fundraised income (£1.9m to £1.5m) was counteracted by growth in legacy income (£0.8m to £1.2m), but grant income fell from £730k to £156k. Donations include £233k of goods in kind income related to internet advertising, with the same value showing as expenditure in our costs of raising funds.

The policy states that the Society shall maintain a level of ‘free reserves’ that covers all the annual expenditure of the Society (based on current projected costs for the year excluding depreciation) for at least four months and expenditure of the Society excluding care and medical service costs (where there is an established flow of income) for at least nine months. Free reserves are defined within the policy and are consistent with the reporting requirements of the SORP.

Continued rises in interest rates helped to improve our investment income, alongside our move to put some of our surplus funds on short-medium term deposit.

Total reserves for the Group reduced from £28.1m last year to £26.7m as at 31 March 2024. The reserves comprise restricted reserves of £2.4m (2023: £2.8m), a negative pension

reserve of £3.8m (2023: £3.7m), a revaluation reserve of £2.2m (2023: £2.2m) and unrestricted funds of £25.8m (2023: £26.9m), of which £3.5m (2023: £4.7m) is the balance of the designated reserve.

Free reserves, which exclude funds held as fixed assets, total £12.0m at 31 March 2024 (2023: £14.5m), and this represents 8 months (2023: 9 months) of total budgeted expenditure for 2024/25 and 18 months (2023: 18 months) of total expenditure excluding care and medical services costs. Although these levels of cover are significantly higher than those set by the reserves policy, the Trustees remain comfortable with the position because the free reserves balance includes £3.5m of designated reserves, held separately for specific uses.

The Society’s budget for 2024/25 was approved in March 2024, and shows a small operational surplus before one-off costs related to backlog estates maintenance, expenditure related to our future land strategy and an increase in our contributions to the defined benefit scheme deficit. With cash and liquid investment balances remaining strong, the Trustees believe that the Society has sufficient working capital to fund operations for the foreseeable future, and sufficient time to take any appropriate action should circumstances change negatively.

In 2019/20, the Trustees established a designated reserve to support and keep track of the use of the funds for four specific purposes and a balance of £10.4m was transferred into designated funds as at 1 April 2019. Since 2019/20 expenditure of £6.9m has been attributed to the designated reserve and so the balance at 31 March 2024 is £3.5m.

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ۋ Person-centred care means people living at the Epilepsy Society are empowered to make decisions about what they like to do.

Details of fund movements for the year are set out in note 17 and restricted reserves are detailed in note 19 to the accounts.

Balance Sheet

Group cash at bank and in hand reduced from £9.1m as at 31 March 2023 to £2.4m at 31 March 2024. A significant element of this reduction comes from us putting a further £2.1m on deposit with Cazenove during the year, to improve our return on the cash we hold that is surplus to working capital needs, in line with our treasury management policy. Another large

impact on our cash was a reduction in accruals, as one of our key suppliers caught up on a significant backlog in their invoicing. 23/24 also saw an increase in fixed asset purchases (up from £340k to £812k) as we invested in particular in our Therapeutic Drug Monitoring equipment.

Going concern review

The Trustees continue to review the financial sustainability of the Society in detail, both at the Board and through the Finance, Performance and Resources Committee. In particular, we have considered expected

cashflows for several years after the date of signing of these accounts and the potential impact of a number of scenarios across care funding, pay and general cost inflation and fund-raising income growth. The Trustees consider there are no material uncertainties regarding the charity’s ability to continue as a going concern, and therefore are satisfied that in all cases the Society remains able to meet its obligations to at least 31 March 2026, and that these accounts should be prepared on a going concern basis.

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Epilepsy Society | Annual report 2023/2024 | Looking to the future

Engagement with stakeholders

The Trustees, who are Directors for the purposes of the Companies Act, confirm that in accordance with Section 172 (1) of the Companies Act they act in a way they consider most likely to achieve the purposes of the Company. In making this assessment, the Trustees consider the relevant actions of the Board, and engagement with all stakeholders is described throughout the annual review. Taking the areas required for disclosure in turn:

The likely consequences of any decision in the long term

Epilepsy Society’s long-term sustainability is considered by the Trustees as set out in the Funds position and reserves policy and Going concern sections on page 35. Risk management is also discussed further in the report, on pages 32 and 33.

The interests of the company’s employees

This is detailed below under the Employment and Volunteers section.

The need to foster the company’s business relationships with suppliers, customers and others Epilepsy Society always seeks to maintain a positive relationship with its suppliers, ensuring all nondisputed invoices are paid within 30 days — in line with Epilepsy Society’s agreed payment terms. Our business partnerships are further outlined in the Fundraising activities section on pages 27 and 28. Lived experience sits at the heart of all we do, in particular working with our most important stakeholders, people with epilepsy. All of our engagement with key stakeholder groups involves consideration of this, including Board and Committee discussions.

The impact of the company’s operations on the community and environment

Epilepsy Society’s environmental reporting is detailed on this page and overleaf.

The desirability of the company maintaining a reputation for high standards of business conduct

Epilepsy Society has a risk register and assurance framework to manage regulatory and legal risk and is committed to complying with all applicable laws and regulations relating to fraud, bribery and corruption.

Employment and volunteers

The Society employees more than 300 staff and encourages volunteers to help us in a range of ways across our many service areas. We value and embrace difference and we work hard to ensure we are inclusive and champion diversity. We have added to our diverse workforce by implementing our first ever international recruitment campaign. We are proud to welcome over 25 new Support Workers from countries including Kenya, Pakistan and Nigeria. Alongside this we have also welcomed around 20 new Support Workers that have joined our permanent workforce rather than work as agency workers.

The Society aims to be a place where staff and volunteers enjoy working, are involved in establishing the Society’s approach and help to provide high quality services to people with epilepsy. We want staff to feel supported and have a range of support mechanisms in place to provide them with help when they need it, such as Mental Health First-Aiders, a well-being helpline, well-being weeks and an Employee Forum.

Learning and development is a key part of making sure our staff are fulfilled in their roles, and have the skills required to carry out their roles to a high standard. We continue to ensure we are meeting people’s needs as well as those of our sector; an example is our implementation of the new Oliver McGowan mandatory training on learning disability and autism.

Insurance, health and safety and energy reporting

Health and Safety remains extremely important to the Society. We are dedicated to the care of our residents, staff and volunteers by providing a safe and pleasant environment for every person who uses or provides our services. All new starters receive our H&S Policy and a H&S induction, and all staff are required to complete regular training in all H&S aspects applicable to their role. The Head of Estates produces a monthly H&S report which is reviewed by both the management board, and the H&S committee who also meet quarterly. It is also reviewed regularly by the Audit, Governance and Risk Committee and the Board of Trustees. This year we have also successfully implemented a comprehensive compliance tracker to support accurate documentation and monitoring of the multitude of statutory tasks carried out by the society across their buildings.

The Society maintains a comprehensive suite of insurance policies to protect it against the various insurable risks it faces. The Society’s total coverage is reviewed on an annual basis to ensure that it has a sufficient range and level of cover and policies in place and each individual policy is also reviewed before renewal each year. Cover is then adjusted, sometimes by taking out new and additional cover, to take account of new and emerging risks and Value for Money considerations. The policies include

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cover for members of the Board and officers against liabilities in relation to the Society and its activities.

Under the Energy and Carbon Report Regulations, we are required to include Streamlined Energy and Carbon Reporting. This information is set out in the tables below.

We have followed the 2019 HM Government Environmental Reporting Guidelines. We have also used the GHG Reporting Protocol — Corporate Standard and have used the 2020 UK Government’s Conversion Factors for Company Reporting. The chosen intensity measurement ratios are based on numbers of staff and number of residents, which the Trustees believe are the most appropriate measurements.

In 2023/2024 average consumption per capita remains broadly the same for the third year. Electricity consumption has increased significantly, potentially due to the increase in number of permanent staff along with a slight increase in working on site, whilst the number of residents have decreased. In contrast Gas consumption has reduced, with continued replacement of end of life boilers with more efficient ones. Fuel consumption has increased in line with actively increasing journeys for our residents to enhance their quality of life; we have both refreshed our vehicle fleet and employed a dedicated driver. We continue to partner with EIC who are supporting our ESOS reporting process.

Governance, the Board and Executive Officers

The Society is governed by its Articles of Association which set out the composition of the Board. The Articles were recently updated and modernised to allow for hybrid meetings, to clarify that trustees are automatically Members and to provide clarification of the process for all trustee appointments which is now more robust. The Society currently has around 100 voting members.

The Board has to be made up of between 6 and 16 Trustees of whom no more than 4 Trustees may be coopted. Currently, there are 12 Trustees who are listed on page 68 and meet quarterly. They delegate some authority to their four Committees:

----- Start of picture text -----
Year ended Year ended
UK greenhouse gas emissions and energy use data
31 March 2024 31 March 2023
Energy consumption used to calculate emissions (kWh) 4,767,981 4,704,940
Energy consumption breakdown:
gas (kWh) 2,881,958 3,213,237
electricity (kWh) 1,878,754 1,486,924
transport fuel (litres) 7,269 4,779
Year ended Year ended
UK greenhouse gas emissions and energy use data 31 March 2024 31 March 2023
Emissions in metric tonnes C02e:
Gas and electricity 1,230.2 1,146.1
Owned transport 17.4 11.5
Total 1,247.6 1,157.6
Intensity ratios in metric tonnes CO2e:
Per FTE staff member — 297 in 2024 (242 in 2023) 1.8 1.8
Per resident — 94 in 2024 (100 in 2023) 7.4 7.2
(Based on average usage (Based on average usage
per resident being 4 x that per resident being 4 x that
of staff member) of staff member)
----- End of picture text -----

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Epilepsy Society | Annual report 2023/2024 | Looking to the future

Audit, Governance & Risk; Finance, Performance & Resources; Research, Medical and Care Services and Appointments & Remuneration. These delegation areas, and appropriate levels of authorisation, are captured in a Schedule of Delegation which is reviewed by all Committees and approved by the Board. Each Committee is chaired by a Trustee and the membership is composed of a number of other Trustees.

The Committees and their membership during 2023/24 were as follows:

Appointments & Remuneration Committee

The Committee’s purpose is to ensure that the Board is fully recruited, resourced and retained in accordance with the Constitution of the Society; to oversee on behalf of the Board the selection of the Chairman of the Board; to ensure that the executive capacity and capability of the Society is fully recruited, resourced and retained in accordance with the Constitution; to oversee on behalf of the Board the monitoring of performance of the Board, trustees, the CEO and, as appropriate, direct reporting executives; and to receive reports on behalf of the Board on all external or internal processes related to employment, human resources or organisational culture matters that require confidentiality or discretion.

Members

• Catherine Alcock (Co Chair)

• Rae Avatar Barnett (Co Chair) from December 2023

• Andrew Gray

• Andrew Gosling

Audit, Governance and Risk Committee

The Committee’s purpose is to ensure that the Society’s financial records and related affairs and controls are prepared, maintained, and independently audited appropriately; the Society’s other operational affairs are independently audited appropriately; the Society’s governance regime, including legal, regulatory and best practices requirements, is adhered to, maintained and enhanced; and that material risks are systematically managed in line with applicable best practice and the risk appetite of the Board of Trustees.

Members

• Andrew Gosling (Chair)

• Andrew George until October 2023

• Hannah Purves from December 2023

• Karen Skinner from December 2023

• Stephen Smith until December 2023

• Jacqueline Sullivan until July 2023

• Robin Woolfson from December 2023

Finance, Performance & Resources Committee

The main functions of the Committee are to monitor in detail on behalf of, and make recommendations to, the Board in relation to Financial and operational sustainability, Annual, Multi-annual or other Business or Operational Plans, Financial modelling, Budgets, the preservation, maintenance or allocation of Resources (whether human, capital, land, improvements or fixtures, or other assets or property), or the relevant legal, financial, best practice or other standards appropriate to them; to monitor in detail performance, and risk related to performance, against Board approved Annual Multi-annual or other Business or Operational Plans; and to liaise as appropriate with the

Audit, Governance & Risk Committee on the annual internal audit plan, and risk management in general, to ensure risks related to Finance, Performance and Resources are appropriately covered.

Members

• Andrew Gray (Chair)

• Catherine Alcock

• Tracie Coultas-Pitman

• Nick Grant from December 2023

• Jim Hagan

• Madani Sow until October 2023

• Deborah Wheeler

Research, Medical and Care Services Committee (new Committee established September 2023) The Committee’s purpose is to monitor on behalf of, and make recommendations to, the Board in relation to the Society’s activities in the areas of Research, Medical and Care Services; to ensure the quality, safety and compliance of the services delivered by the Society in these areas are of high quality and are compliant with the appropriate regulators and frameworks; to promote compliance, safety and quality improvements and learning in care and medical services including through oversight of the risk management system related to such services; to liaise as appropriate with the Audit, Governance & Risk Committee on the annual internal audit plan, and risk management in general, to ensure risks related to Research, Medical and Care Services activities are appropriately covered; to ensure value for money for the Society and the recipients of our services from these activities; to have oversight of the Society’s relationships with key identified stakeholders that might, in appropriate co-operative activities with the Society, further the advocacy, social care, clinical R&D, or other long term objectives of the Society;

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to ensure that research undertaken by the Society is conducted in an ethically sound manner, and aligned with the strategic direction set by the Society; to ensure our plans in these areas are consistent with the Society’s overall strategic plans; to oversee the grant submissions and other fundraising activity needed to fund our research; and to establish a cadre of researchers as an independent external reference group; to seek advice from external experts as appropriate across all three areas of interest.

Members

• Tracie Coultas-Pitman (Co Chair)

• Jacqueline Sullivan (Co Chair)

• James Hagan

• Karen Skinner

• Deborah Wheeler

• Robin Woolfson

The Board is responsible for setting the strategic direction of the Society and ensuring that it is properly controlled, the risks are managed, it is financially sustainable and that it delivers charitable outcomes for people with epilepsy in the UK.

The Trustees have a broad range of skills and expertise and are recruited through open advertisement. Trustees are allowed to serve on the Board for a maximum of nine years. Trustees can serve on the Board beyond the maximum nine years only in exceptional circumstances. Such reappointments will be made in accordance with the guidance contained within the Charity Governance Code at Chapter 5.7.4. Consideration of the Charity Governance Code by the Audit, Governance and Risk Committee will continue into 2024/25.

The Board delegates the day-to-day operations to the Chief Executive Officer, who is supported by a Chief

Financial Officer and six Executive Directors who are also listed on page 68. The pay of the CFO and of the Executive Directors is reviewed annually by the Board of Trustees, with the salaries being benchmarked against pay levels in other not-for-profit organisations of a similar size.

Statement of Trustees’ Responsibilities

The Trustees, who are also directors of the Epilepsy Society for the purpose of company law, are responsible for preparing the Trustees’ annual report, which includes the strategic report, and the Financial Statements for the Group and the Society in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the Trustees to prepare financial statements for each financial year.

They must not approve the Financial Statements unless they are satisfied that these give a true and fair view of the state of affairs of the charitable company and the Group and of the incoming resources and application of resources, including the income and expenditure, of the Group for that period.

In preparing these financial statements, the Trustees are required to:

• select suitable accounting policies and apply them consistently;

• observe the methods and principles in the Charities SORP;

• make judgements and estimates that are reasonable and prudent;

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

• prepare the Financial Statements on a going concern basis, unless it is inappropriate to presume that the charitable company will continue to operate.

The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charitable company’s transactions and disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the Financial Statements comply with the Companies Act 2006.

They are also responsible for safeguarding the assets of the Society and the Group and therefore for taking reasonable steps for the prevention and detection of fraud and other irregularities.

So far as each of the Trustees is aware at the time the report is approved:

• there is no relevant audit information of which the company’s auditors are unaware; and

• the Trustees have each taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.

External auditors

Crowe UK LLP were appointed as the Society’s auditors by a General Meeting of members of the Society. Crowe has expressed their willingness to continue in office and a resolution to re-appoint them will be proposed at the Annual General Meeting.

This Trustee’s annual report was approved by the Board of Trustees on 20 September 2024 and is signed on their behalf by:

Kate Alcock, Chairman

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Independent Auditor’s Report to the Members and Trustees of Epilepsy Society

44 Consolidated statement of financial activities

• 45 Balance Sheets

46 Consolidated Cashflow Statement

47 Notes to the Financial Statements

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Opinion

We have audited the financial statements of the Epilepsy Society for the year ended 31 March 2024 which comprise the Group and Parent Statements of Financial Activities, Group and Parent Balance Sheets, and Consolidated Cash Flow Statement and the related notes 1 to 23 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, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

• give a true and fair view of the state of the group’s and charitable company’s affairs as at 31 March 2024 and of its income and expenditure, for the year then ended;

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

• have been prepared in accordance with the requirements of the Companies Act 2006

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 Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the charitable group 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 group and charitable company’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 contained within the annual report. The other information comprises the information included in the annual report, other than the financial statements and our auditor’s report 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.

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.

Opinions on other matters prescribed by the Companies Act 2006

In our opinion based on the work undertaken in the course of our audit

• the information given in the trustees’ report, which includes the directors’ report and the strategic report prepared for the purposes of company law, for the financial year for which the financial statements are prepared is consistent with the financial statements; and

• the strategic report and the directors’ report included within the trustees’ report have been prepared in accordance with applicable legal requirements.

Matters on which we are required to report by exception

In light of the knowledge and understanding of the group and charitable company and their environment obtained in the course of the audit, we have not identified material misstatements in the strategic report or the directors’ report included within the trustees’ report.

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion:

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

• adequate and proper accounting records have not been kept; or

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

• certain disclosures of trustees’ remuneration specified by law are not made; or

• 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 set out on page 39, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they 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 group and charitable company’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 charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements

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 an auditor’s report 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.

Details of the extent to which the audit was considered capable of detecting irregularities, including fraud and noncompliance with laws and regulations are set out below.

A further description of our

responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at: frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Extent to which the audit was considered capable of detecting irregularities, including fraud Irregularities, including fraud, are instances of non-compliance with laws and regulations. We identified and assessed the risks of material misstatement of the financial statements from irregularities, whether due to fraud or error, and discussed these between our audit team members. We then designed and performed audit procedures responsive to those risks, including obtaining audit evidence sufficient and appropriate to provide a basis for our opinion.

We obtained an understanding of the legal and regulatory frameworks within which the charitable company operates, focusing on those laws and regulations that have a direct effect on the determination of material amounts and disclosures in the financial statements. The laws and regulations

we considered in this context were the Companies Act 2006 together with the Charities SORP (FRS 102). We assessed the required compliance with these laws and regulations as part of our audit procedures on the related financial statement items.

In addition, we considered provisions of other laws and regulations that do not have a direct effect on the financial statements but compliance with which might be fundamental to the charitable company’s ability to operate or to avoid a material penalty. We also considered the opportunities and incentives that may exist within the charitable company for fraud. The laws and regulations we considered in this context for the UK operations were General Data Protection Regulation (GDPR), Care Quality Commission (CQC) regulations, employment legislations, taxation legislations and anti-fraud, bribery and corruption legislation.

Auditing standards limit the required audit procedures to identify noncompliance with these laws and regulations to enquiry of the Trustees and other management and inspection of regulatory and legal correspondence, if any.

We identified the greatest risk of material impact on the financial statements from irregularities, including fraud, to be within the timing of recognition of income and the override of controls by management. Our audit procedures to respond to these risks included enquiries of management, and the Audit, Governance and Risk Committee about their own identification and assessment of the risks of irregularities, sample testing on the posting of journals, reviewing accounting estimates for biases, reviewing regulatory

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correspondence with the Charity Commission, recording the impact of the CQC regulatory reviews and reading minutes of meetings of those charged with governance.

Owing to the inherent limitations of an audit, there is an unavoidable risk that we may not have detected some material misstatements in the financial statements, even though we have properly planned and performed our audit in accordance with auditing standards. For example, the further removed non-compliance with laws and regulations (irregularities) is from the events and transactions reflected in the financial statements, the less likely the inherently limited procedures required by auditing standards would identify it. In addition, as with any audit, there remained a higher risk of nondetection of irregularities, as these may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal controls. We are not responsible for preventing noncompliance and cannot be expected to detect non-compliance with all laws and regulations.

Use of our report

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s 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 charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

Alastair Lyon Senior Statutory Auditor

For and on behalf of Crowe UK LLP Statutory Auditor London

27 September 2024

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Consolidated statement of financial activities (including Income and Expenditure Accounts) for the year ended 31 March 2024

						31 March 2024	31 March 2024			31 March 2023
				Unrestricted		Restricted		Total funds		Total funds
				funds		funds
		Note		£’000		£’000		£’000		£’000
Income from
Donations and legacies		3		2,782		111		2,893		3,401
Charitable activities		4		15,056		61		15,117		13,964
Other trading activities		5		336		—		336		314
Investments		6		345		—		345		174
Other				169		—		169		46
				18,688		172		18,860		17,899
Expenditure on
Raising funds		3		(960)		—		(960)		(1,008)
Charitable activities:
Care		4		(14,628)		(126)		(14,754)		(13,409)
Research		4		(975)		(360)		(1,335)		(2,060)
Medical services		4		(1,685)		—		(1,685)		(1,728)
Help, information and advocacy services		4		(777)		(61)		(838)		(614)
Other		4		—		—		—		—
				(18,065)		(547)		(18,612)		(17,811)
Trading activities		5		(832)		—		(832)		(320)
Other costs		8		(379)		—		(379)		(333)
Total expenditure				(20,236)		(547)		(20,783)		(19,472)
Net gains/(losses) on fxed assets		13		—		—		—		(13)
Net gains/(losses) on investments		14		556		—		556		74
Net income/(expenditure) for the year				(992)		(375)		(1,367)		(1,512)
Transfers between funds		17		—		—		—		—
Other recognised gains/(losses):
Actuarial gains/(losses) on defned beneft		20		(132)		—		(132)		1,719
pension scheme
Net movement in funds		17		(1,124)		(375)		(1,499)		207
Reconciliation of funds:
Total funds brought forward		17		25,397		2,752		28,149		27,942
Total funds carried forward		17		24,273		2,377		26,650		28,149

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Balance Sheets as at 31 March 2024

					31 March 2024	31 March 2024			31 March 2023
			Group		Society		Group		Society
		Note	£’000		£’000		£’000		£’000
Fixed assets
Intangible assets		12	43		43		80		80
Tangible assets		13	14,824		13,739		14,661		13,541
Investments		14	9,974		12,420		9,478		11,924
			24,841		26,202		24,219		25,545
Current assets
Investments			3,143		3,143		869		869
Stock			25		5		23		3
Debtors		15	2,395		2,404		1,621		1,624
Cash at bank and in hand			2,424		2,112		9,124		8,814
			7,987		7,664		11,637		11,310
Liabilities
Creditors: Amounts falling due within one year		16	(2,417)		(2,412)		(3,977)		(3,970)
Net Current assets			5,570		5,252		7,660		7,340
Total assets less current liabilities			30,411		31,454		31,879		32,885
Net assets excluding pension liability			30,411		31,454		31,879		32,885
Defned beneft pension scheme liability		20	(3,761)		(3,761)		(3,730)		(3,730)
Total net assets			26,650		27,693		28,149		29,155
The funds of the charity
Restricted income funds		19	2,377		2,377		2,752		2,752
Unrestricted funds		17	22,338		23,381		22,231		23,237
Designated fund		17	3,456		3,456		4,656		4,656
Pension reserve		17	(3,761)		(3,761)		(3,730)		(3,730)
Revaluation reserve			2,240		2,240		2,240		2,240
Total unrestricted funds			24,273		25,316		25,397		26,403
Total funds			26,650		27,693		28,149		29,155

The loss for the financial year dealt with in the financial statements of the parent company was £1,462,000 (2023: a profit of £238,000).

The financial statements on pages 44 to 66 were approved by the Trustees on 20 September 2024 and signed on their behalf by:

Kate Alcock, Chairman Andrew Gray, Treasurer

The notes on pages 47 to 66 form part of these accounts.

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Consolidated Cashflow Statement for the year ended 31 March 2024

		31 March 2024	31 March 2024	31 March 2023
		£’000		£’000
Cash fows from operating activities:
Net cash provided by operating activities		(4,102)		(1,094)
Cash fows from investing activities:
Dividends, interest and rents from investments		345		174
Purchase of property, plant and equipment		(812)		(340)
Investment in Cazenove Multi-Asset Fund		–		(5,000)
Investment in Cazenove Short term Deposit		(2,131)		(869)
		(2,598)		(6,035)
Change in cash and cash equivalents in the year		(6,700)		(7,129)
Cash and cash equivalents at beginning of the year		9,124		16,253
Cash and cash equivalents at end of the year		2,424		9,124
Reconciliation of net income/(expenditure) to net cash fow from operating activities
Group		31 March 2024		31 March 2023
		£’000		£’000
Net income for the year		(1,367)		(1,512)
Adjustments for:
Depreciation and amortisation		686		647
(Gains)/losses on fxed asset investments		(556)		(74)
(Gains)/losses on current asset investments		(143)		–
Investment management fees		60		35
Dividends, interest and rents from investments		(345)		(174)
Pension defcit service and interest costs		192		193
Pension defcit contributions		(293)		(1,294)
(Proft)/loss on sale of fxed assets		–		13
Investment revaluation		–		–
Decrease/(increase) in stocks		(2)		(7)
(Increase)/decrease in debtors		(774)		215
Increase/(decrease) in creditors		(1,560)		864
Net cash provided by operating activities		(4,102)		(1,094)

The Society has taken advantage of the exemption that allows it to prepare a Group cashflow and not a separate cash flow for the Society.

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Notes to the Financial Statements for the year ended 31 March 2024

1. Legal status

The Society is a company limited by guarantee (registered number 492761). The Directors of the Company are the Trustees set out on page 68. In the event of the Society being wound up, the liability in respect of the guarantee is limited to £1 for each member of the Society.

balance sheet date which would warrant adjustment to the financial statements.

Pension scheme accounting

Judgement is applied in the selection of the valuation assumptions applied to the Society’s defined benefit pension schemes as set out in note 20.

The Society is registered as a charity with the Charity Commission (charity number 206186).

2. Accounting policies

a) Basis of preparation

The financial statements have been prepared in accordance with the Statement of Recommended Practice for Charities (FRS102), the Companies Act 2006 and applicable accounting standards. The charity is a Public Benefit Entity as defined by FRS102.

The Trustees consider that there are no material uncertainties regarding the charity’s ability to continue as a going concern. In arriving at this view, the Trustees have considered the risks presented by current inflation levels and forecasts, and the timing of future cash flows. They have modelled a range of scenarios and consider that, having taken account of these scenarios (including actions that would be taken in response to any crystallization of risk), the likely timings of cash flows over the 12 months from date of signing do not create uncertainties around the assessment of the charity as a going concern.

b) Significant judgements and estimates

In preparing these financial statements, management has made judgements in the application of the Society’s accounting policies which materially affect the amounts recognised in the financial statements. Estimates and judgements are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances.

Key areas subject to judgement and estimation are as follows:

Value of investment properties

An independent desktop valuation of the Group’s farmland was undertaken as at 31 March 2024 in accordance with its accounting policies. As is normal for this sort of exercise, there was a significant element of judgement used and a number of assumptions made by the Society’s professional valuers in arriving at their valuation.

Bad and doubtful debts

The Group provides against rent arrears of current and former tenants and other miscellaneous debts to the extent that they are considered to be irrecoverable.

c) Basis of Consolidation

The Group financial statements consolidate the financial statements of the Society, and its wholly owned subsidiaries, Epilepsy Enterprises Limited and NSE Facilities Limited, at 31 March 2024 with intra group loan and trading account balances and other intra group transactions being eliminated. The consolidated financial statements incorporate the financial statements of Epilepsy Enterprises Ltd and NSE Facilities Ltd, the charity’s subsidiaries. No separate statement of financial activities is presented for Epilepsy Society, as permitted by Section 408 of the Companies Act 2006. The net outgoing resources of Epilepsy Society were £1,462,000 (2023: incoming resources of £238,000).

A summary of the key accounting policies, which have been applied consistently across all entities, is set out below.

d) Income

The Group recognises revenue when its receipt is probable as per section 23 of FRS102. All income is included in the Statement of Financial Activities when the Group is legally entitled to the income, is reasonably certain of receipt and the amount can be measured with reasonable accuracy.

Legacy income

Judgement is applied in the consideration of the likelihood of receipt and reliability of measurement of amounts receivable in respect of legacies to which the charity has established entitlement at the balance sheet date. Subsequent events are monitored to identify those which give additional information about conditions as at the

Income from care fees is recognised when the care services related to that income have been delivered, taking into account the time period that the invoices relate to.

Legacies’ entitlement is recognised when it is probable that it will be received i.e. the charity has been informed that there has been grant of probate; the executors have

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

established that there are sufficient assets in the estate, after settling any liabilities, to pay the legacy; and any conditions attached to the legacy are either within the control of the charity or have been met.

Income from donations or grants is recognised when there is evidence of entitlement to the gift, receipt is probable, and its amount can be measured reliably. Additionally, it is receivable when the conditions for receipt of agreed donation or grant funding have been met. Where terms and conditions have not been met or uncertainty exists as to whether the charity can meet the terms or conditions otherwise within its control, the income is not recognised but deferred as a liability until it is probable that the terms or conditions imposed can be met.

Donated services totalling £233k (2023: £316k) are included as a gift in kind and an expense and are included at their estimated value to the charity where this is reasonably quantifiable and measurable. In accordance with the Charities SORP (FRS 102), the general time of volunteers is not recognised.

e) Funds

Unrestricted funds are funds that are expendable at the discretion of the Trustees in furtherance of the general objects of the Society and which has not been designated for other purposes.

Designated funds comprise unrestricted funds that have been put aside at the discretion of the Trustees for particular purposes (see note 17). Each Designated fund is applied by the Board of Trustees on the recommendation of the Finance, Performance and Resources Committee.

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the Society for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of the major restricted funds are set out in the notes to the financial statements.

f) Expenditure

All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category. Where costs cannot be directly attributed to particular headings, they have been allocated to activities on a basis consistent with use of the resources. Overheads have been allocated on a mix of the most appropriate bases of staff numbers, building size, income or expenditure.

g) Tangible fixed assets

h) Intangible fixed assets

Intangible assets are identifiable non-monetary assets without physical substance. The Group’s intangible assets comprise IT software and licences. These are stated at cost less accumulated amortisation. The cost includes cost of asset purchase and other directly attributable costs.

The threshold for capitalisation is £1,000 for a single asset or group of assets.

i) Depreciation and amortisation of fixed assets Freehold land is not depreciated.

Other assets are depreciated, on a straight-line basis over the useful economic life of the assets from the date of acquisition, as follows:

----- Start of picture text -----
Freehold buildings 50 years
used for the Society’s
operational activities
Leasehold buildings Life of the lease
Fixtures, fittings, 4–10 years
furniture, and equipment
Computer and other 3–10 years
equipment
Vehicles 5 years
----- End of picture text -----

Intangible assets are amortised on a straight-line basis over the useful economic life of the asset as follows:

----- Start of picture text -----
Software licences 3 years
Other licences, Over their identifiable life
trademarks, rights etc.
----- End of picture text -----

j) Investments

The Group’s investment in farmland is stated at market value. An external valuation of the Estate including all property and land will be obtained at least every three years or if there is likely to be a material change in the value. The most recent external desktop valuation was performed as at 31 March 2024 on the farmland. A desktop revaluation is performed in the intervening years. Investments in the subsidiaries are stated at cost. The SOFA includes the net gains and losses arising on revaluations and disposals throughout the year.

All assets are held at cost less accumulated depreciation.

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

k) Listed Investments

Investments are included in the Balance Sheet initially at cost and revalued to market value at the reporting date. Realised gains and losses on disposals and unrealised gains and losses on investments at the Balance Sheet date are included in the Statement of Financial Activities. The historical cost of investments is shown in note 14.

l) Impairment

The Group carries out an impairment review of individual tangible assets and cash generating units at each reporting date. The review takes into account internal and external indicators of impairment. Where an indicator of impairment exists, an impairment assessment is performed where the carrying amount is compared to the recoverable amount. If the carrying amount of an asset or cash generating unit exceeds the recoverable amount, then the loss is charged to the SOFA as expenditure and as a separate line within operating expenditure where it is considered to be material.

o) Taxation

The Society is a registered charity and is exempt from Corporation Tax on its income and gains to the extent that they are applied to its charitable purposes. The subsidiaries aim to distribute any taxable profits in full to the Society through Gift Aid so will only provide for a tax liability where this is not possible.

p) VAT

Most expenditure is subject to VAT, which the Society is unable to reclaim. This expenditure is therefore shown inclusive of VAT. VAT can be reclaimed by the Society under the partial exemption method for certain other activities and this recovery is recognised in the SOFA during the year. Where the activities of the Society’s subsidiaries relate to taxable supplies, VAT can be reclaimed, and this expenditure is shown net of VAT. The balance of VAT payable to or recoverable at the year-end is included in the Balance Sheet as a current liability or asset.

q) Pension costs

m) Financial Instruments

A financial instrument is a contract that gives rise to a financial asset of one entity and a financial liability of another entity. The Group accounts for its financial instruments using sections 11 and 12 of FRS102. Basic financial instruments are initially recognised at transaction price and in subsequent years at amortised cost. Financial instruments that do not meet the criteria of basic financial instruments are initially recognised at fair value and in subsequent years are measured at fair value at the end of each reporting period with any changes in fair value being recognised in the SOFA. The Group’s financial instruments are all currently classified as basic.

Financial assets are derecognised when the rights to the cash flows from the asset expire or are settled. Financial liabilities are derecognised when the obligation is discharged, cancelled, or expired. Any difference between the consideration paid or received and the amounts derecognised are recognised in the SOFA.

n) Stock

The Society operates a defined benefit pension scheme for permanent employees, which was closed to new entrants in 2006 and it is recognised according to section 28 of FRS102. The assets, liabilities and movements in the surplus or deficit of the scheme are calculated by qualified independent actuaries as an update to the latest full actuarial valuation.

r) Provisions

The Group provide for liabilities when:

• there is a present legal or constructive obligation, resulting from a past event, at the balance sheet date;

• it is probable that a transfer of economic benefits will be required to settle the obligation; and

• a reliable estimate can be made of the amount of the obligation.

• The amount recognised as a provision is the best estimate of the expenditure required to settle the present obligation at the balance sheet date.

Stock comprises goods for resale and is valued at the lower of cost or net realisable value after making due allowance for obsolete or slow-moving items.

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

3. Voluntary income and costs of raising funds

						31 March 2024	31 March 2024	31 March 2023
Group		Income and		Support costs		Total income		Total income
		direct costs				and costs		and costs
		£’000		£’000		£’000		£’000
Income:
Donations and fundraising		1,543		—		1,543		1,883
Legacies		1,194		—		1,194		788
Grants		156		—		156		730
Total income		2,893		—		2,893		3,401
Expenditure:
Costs of raising funds		(699)		(261)		(960)		(1,008)
Net funds raised		2,194		(261)		1,933		2,393

The above income was all in the Society, which also received £11k in gift aid, giving total Society income of £2,904k.

4. Charitable activities

The Group carries on a range of charitable activities, some of which are funded from Local Authorities, Care Commissioning Groups, Integrated Care Boards and NHS Trusts. Others are funded from grants and voluntary income. These are grouped below in the following categories:

• Care services — the Society ran six care homes and a supported living service for people in supported housing or their own homes.

• Research — the Society carries out research, in conjunction with UCL and UCLH, to take forward the prevention and treatment of the condition of epilepsy. The major investment is in genomic research but other related research is also undertaken.

• Medical services — the Group provides services and facilities for people with epilepsy, to UCLH and other NHS trusts, including a 24 bed in-patient facility, therapeutic drug monitoring, MRI, other diagnostic assessments, an oncall doctor service and direct therapeutic services such as occupational therapy and art therapy.

• Help, information and advocacy services — the Society provides help and support to people with epilepsy through a helpline, online assistance, provision of information, signposting, training for professionals and advocacy and awareness-raising activities.

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

4. Charitable activities (continued)

The income and costs from these activities are set out below:

			31 March 2024				31 March 2023
			Group				Group
	Direct Activity		Support Activity		Total Funds		Total Funds
	£’000		£’000		£’000		£’000
Income
Care services	13,277		—		13,277		12,264
Research	—		—		—		—
Medical services	1,763		—		1,763		1,631
Help, information and advocacy	77		—		77		69
	15,117		—		15,117		13,964
Expenditure
Care services	(10,148)		(4,606)		(14,754)		(13,409)
Research	(907)		(428)		(1,335)		(2,060)
Medical services	(1,068)		(617)		(1,685)		(1,728)
Help, information and advocacy	(518)		(320)		(838)		(614)
	(12,641)		(5,971)		(18,612)		(17,811)

5. Other trading activities

The Group carries out a limited amount of other trading activities to raise funds for the Society. Some of these activities are carried out through the Society’s subsidiary, Epilepsy Enterprises Limited. A breakdown of these activities is set out below:

Group					31 March 2024		31 March 2023
	Income and		Support		Total income		Total income
	direct costs		costs		and costs		and costs
	£’000		£’000		£’000		£’000
Income:
Merchandise	18		—		18		14
Coffee Shop	32		—		32		46
Rental income and overnight charges	286		—		286		254
Total income	336		—		336		314
Expenditure:
Costs of sales — merchandise and shop	(31)		—		(31)		(60)
Letting costs	(313)		(488)		(801)		(260)
Net surplus/(defcit)	(8)		(488)		(496)		(6)

The Society’s trading activities exclude the merchandise and coffee shop above, £5,000 of rental income (2023: £5,000) and £5,000 of support costs (2023: £5,000).

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

6. Investment income

6.Investment income
	31 March 2024		31 March 2023
	Group		Group
	£’000		£’000
Income from farmland	113		107
Other sundry lease income	3		2
Interest receivable and dividends	229		65
Total	345		174

7. Support costs

Support costs allocated to the activities of the charity represent the running costs of the Society. This includes substantial costs of managing our large and ageing estate including depreciation of the unused buildings. As a result, the Trustees are of the opinion that to simply allocate all the support costs in

total would not provide a reasonable reflection of the costs of providing the services. Therefore, the costs have been split out below between normal running costs and additional costs that the charity currently incurs in maintaining its estate.

		31 March 2024	31 March 2024	31 March 2023
		Group		Group
		£’000		£’000
Corporate, fnance and governance costs		2,609		1,961
HR and IT costs		1,193		877
Depreciation of non-function specifc assets		38		44
Estates and offce services costs		1,275		1,213
Normal support costs		5,115		4,095
Additional costs1:
Depreciation of non-function specifc assets		59		49
Estates and land costs		1,547		1,777
Total allocated support costs		6,720		5,921
Allocated to
Charitable activities:
Care		4,606		4,170
Research		428		548
Medical services		617		613
Help, information and advocacy services		320		254
Total charitable activities		5,971		5,585
Raising funds		261		197
Other trading activities		488		139
Total allocated support costs		6,720		5,921

1 these costs represent expenditure on estate maintenance that arise only because of the nature of the Society’s estate, and depreciation of disused buildings together with costs of consultants and advisors employed to further the development or sale of part of the Society’s estate.

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

8. Other income and expenditure

Other expenditure

The Society operates a defined benefit pension arrangement called the Epilepsy Society Pension and Life Assurance Scheme (the “Scheme”). Details of the Scheme are set out in note 20. The Scheme has been closed to new members for a number of years and at 31 March 2024 only had 3 active members (2023: 5). The Society makes employer contributions for these employees and significant deficit contributions into the Scheme which are accounted for as a cost in the normal way.

The major administration costs of running the Scheme are paid for directly by the Society rather than the Scheme. These costs, which total £193k (2023: £176k), together with the pension service costs and the pension interest costs are treated as other expenditure in the accounts, and together come to £379k (2023: £333k).

9. Employee information

Employees costs during the year were:

		31 March 2024	31 March 2023
		Group	Group
Employee costs		£’000	£’000
Wages and salaries		9,275	8,055
Social Security costs		838	739
Pension costs		279	244
Apprentice Levy		29	22
Total		10,421	9,060

Employer deficit contributions of £293,000 (2023: £1,294,000) were paid into the Society’s defined benefit pension scheme during the year as described in note 20. During the year Epilepsy Society paid and/or accrued £nil (2023: accrued £nil) of redundancy costs.

The average number of people employed during the year was:

	31 March 2024 31 March 2023
	Group Group
Residential and domiciliary care services Research and medical Services Communication, information and marketing Fundraising Administration and management	237 249
	18 24
	21 13
	10 8
	33 31
Total	319 325
Bandings of employee emoluments	2024 2023
	No No
More than £60,000 but not more than £70,000	2 2
More than £70,000 but not more than £80,000	3 2
More than £80,000 but not more than £90,000	2 —
More than £90,000 but not more than £100,000	— 1
More than £110,000 but not more than £120,000	— 1
More than £120,000 but not more than £130,000	1 —
More than £140,000 but not more than £150,000	1 1
More than £150,000 but not more than £160,000	1 —
Total	10 7

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

10. Trustees and Executive Officers

Details of Trustees and Executive Officers are set out on page 68 of these Financial Statements. Trustees do not receive any remuneration and during the year one Trustee claimed expenses totalling £470 for travel and subsistence (2023: one Trustee claimed £223).

The table in note 9 setting out employees in pay bands includes the Chief Executive Officer and other Executive Officers whose remuneration totalled more than £60,000 in the year. All Executive Officers are employed on contracts that are the same as those used for other staff and benefits, including pensions, on the same basis.

The total emoluments received by the Chief Executive Officer and other Executive Officers identified as key management personnel was £783k (2023: £617k) represented by salary of £672k (2023: £528k), national insurance of £81k (2023: £70k) and pension contributions of £29k (2023: £19k). One member of the executive team was in post for all of the current year, but only part of the previous year.

11. Net income

Net income is stated after charging/(crediting):

		31 March 2024	31 March 2024	31 March 2023
		Group		Group
		£’000		£’000
Depreciation of tangible fxed assets		648		609
Amortisation of Intangible fxed assets		41		38
Operating lease rentals:
offce equipment		84		106
External auditor’s remuneration excl VAT:
audit of the fnancial statements		38		36
for other services		10		30
Rental Income		286		366

12. Fixed assets: intangible assets

				31 March 2024	31 March 2024			31 March 2023
		Software & systems				Software & systems
		Group		Society		Group		Society
		£’000		£’000		£’000		£’000
Cost
At 1 April		256		256		235		235
Additions		3		3		26		26
Disposals		(2)		(2)		(6)		(6)
At 31 March		257		257		255		255
Accumulated Amortisation
At 1 April		(175)		(175)		(143)		(143)
Charge for the year		(41)		(41)		(38)		(38)
Disposals		2		2		6		6
At 31 March		(214)		(214)		(175)		(175)
Net book value
At 31 March		43		43		80		80

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

13. Fixed assets: tangible assets

Group		Freehold land and buildings	Freehold land and buildings	Fixtures, fttings,	Fixtures, fttings,	31 March 2024 Computer	31 March 2024 Computer	Vehicles	Vehicles	Total
				furniture &		& other
				equipment		equipment
		£’000		£’000		£’000		£’000		£’000
Cost:
At 1 April 2023		20,909		634		3,245		167		24,955
Additions		—		107		676		29		812
Disposals		—		(233)		(241)		(1)		(475)
At 31 March 2024		20,909		50 8		3,680		195		25,292
Accumulated depreciation:
At 1 April 2023		(6,909)		(526)		(2,782)		(77)		(10,294)
Charge for the year		(414)		(40)		(168)		(26)		(648)
Disposals		—		231		243		—		474
At 31 March 2024		(7,323)		(335)		(2,707)		(103)		(10,468)
Net book value:
At 31 March 2024		13,586		173		973		92		14,824
At 31 March 2023		14,000		108		463		90		14,661

The land and buildings held by the Group and the Society were valued as at 31 March 2019 by Carter Jonas, a qualified RICS valuer, who valued the total land and buildings held by the Group at that date at £52.5 million.

Society		Freehold land and buildings	Freehold land and buildings	Fixtures, fttings,	Fixtures, fttings,	31 March 2024 Computer	31 March 2024 Computer	Vehicles	Vehicles	Total
				furniture &		& other
				equipment		equipment
		£’000		£’000		£’000		£’000		£’000
Cost:
At 1 April 2023		19,145		634		3,245		167		23,191
Additions		—		107		676		29		812
Disposals		—		(233)		(241)		(1)		(475)
At 31 March 2024		19,145		508		3,680		195		23,528
Accumulated depreciation:
At 1 April 2023		(6,265)		(526)		(2,782)		(77)		(9,650)
Charge for the year		(379)		(40)		(168)		(26)		(613)
Disposals		—		231		243		—		474
At 31 March 2024		(6,644)		(335)		(2,707)		(103)		(9,789)
Net book value:
At 31 March 2024		12,501		173		973		92		13,739
At 31 March 2023		12,880		108		463		90		13,541

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

14. Fixed assets: investments

	Society	Society	Multi-Asset	Multi-Asset	Group
	Farmland		Fund		Total
	£’000		£’000		£’000
Cost or valuation:
At 1 April 2023	4,440		5,038		9,478
Additions	—		—		—
Gains before management fees	—		556		556
Management fees deducted	—		(60)		(60)
At 31 March 2024	4,440		5,534		9,974
At 31 March 2023	4,440		5,038		9,478

The Society owns 222 acres of farmland that is rented out under an agricultural lease and treated as an investment. A revaluation gain of £2,240k on the Society’s farmland was recognised at 31 March 2021. The basis of the valuation is for full vacant possession and takes into account similar land in the locality in line with the comparable approach generally accepted for valuation for agricultural property. An independent desktop valuation of the Group’s farmland was undertaken as at 31 March 2024.

The Society has an investment of fully paid-up share capital in subsidiary NSE Facilities Limited of £2,446k, which is eliminated on consolidation. This gives a total investment balance of £12,420k in the Society (2023: £11,924k).

During the year the Society invested a further £2,131k with Cazenove on short-term deposit, which is treated as a current asset in the Society and Group balance sheet.

15. Debtors

				31 March 2024	31 March 2024			31 March 2023
		Group		Society		Group		Society
		£’000		£’000		£’000		£’000
Due within one year
Residential and Domiciliary Care Services		645		645		506		506
Less: Provision for bad and doubtful debts		(67)		(67)		(86)		(86)
		578		578		420		420
Medical Services Receivable		271		271		157		157
Rent Receivable		12		12		9		9
Other Receivables		18		17		27		27
VAT Refundable		—		—		2		—
Prepayments & Accrued Income		1,516		1,516		1,006		1,006
Amounts due from Subsidiaries		—		10		—		5
Total due within one year		2,395		2,404		1,621		1,624

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

16. Creditors: Amounts falling due within one year

	31 March 2024 31 March 2023
	Group Society Group Society
Trade creditors Taxation and social security	£’000 £’000 £’000 £’000
	401 401 689 689
	279 279 204 204
Amounts held for residents and tenants	54 54 53 53
VAT payable	5 5 4 4
Other creditors	131 131 248 248
Accruals and deferred income	1,547 1,542 2,779 2,772
Total Creditors: Amounts falling due within one year	2,417 2,412 3,977 3,970

The deferred income balance as at 1 April 2023 was £198k. All £198k of this balance was released to income during the year, and £0k income received during 2023/24 was deferred to future periods.

17. Fund movements

Group						31 March	31 March	31 March	2024
		At 1 April		Income		Expenditure			Transfers		Gains and		At 31 March
		2023									losses		2024
		£’000		£’000		£’000			£’000		£’000		£’000
General funds		22,231		18,688		(19,137)			—		556		22,338
Designated funds		4,656		—		(1,200)			—		—		3,456
Revaluation reserve		2,240		—		—			—		—		2,240
Pension reserve		(3,730)		—		101			—		(132)		(3,761)
Total unrestricted funds		25,397		18,688		(20,236)			—		424		24,273
Restricted funds		2,752		172		(547)			—		—		2,377
Total funds		28,149		18,860		(20,783)			—		424		26,650

Group					31 March	31 March	31 March	2023
		At 1 April		Income	Expenditure			Transfers		Gains and		At 31 March
		2022								losses		2023
		£’000		£’000	£’000			£’000		£’000		£’000
General funds		21,768		17,535	(17,133)			—		61		22,231
Designated funds		7,456		—	(2,800)			—		—		4,656
Revaluation Reserve		2,240		—	—			—		—		2,240
Pension reserve		(6,550)		—	1,101			—		1,719		(3,730)
Total unrestricted funds		24,914		17,535	(18,832)			—		1,780		25,397
Restricted funds		3,028		364	(640)			—		—		2,752
Total funds		27,942		17,899	(19,472)			—		1,780		28,149

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

17. Fund movements (continued)

During 2019/20, The Trustees decided to create a designated fund to ensure that the proceeds from the sale of a tranche of our land to Audley in March 2019 would be used for the purposes they had agreed. The designated fund is used for a combination of four purposes:

• To invest in the backlog of works needed on the Society’s ageing estate;

• To make one-off payments to the Society’s pension scheme in 2020/21 and 2022/23 as part of the deficit reduction plan;

• To pay for consultants and legal costs incurred in possible development of the Society’s land;

• To fund the Society’s research programme to the extent that fundraising income fails to do so.

During the year, the Society incurred £1,200k (2023: £2,800k) in expenditure in these areas and this amount has been transferred out of the reserve during the year.

Society					31 March 2024	31 March 2024	31 March 2024
	At 1 April		Income		Expenditure			Transfers		Gains and		At 31 March
	2023									losses		2024
	£’000		£’000		£’000			£’000		£’000		£’000
General funds	23,237		18,606		(19,018)			—		556		23,381
Designated funds	4,656		—		(1,200)			—		—		3,456
Revaluation reserve	2,240		—		—			—		—		2,240
Pension reserve	(3,730)		—		101			—		(132)		(3,761)
Total unrestricted funds	26,403		18,606		(20,117)			—		424		25,316
Restricted funds	2,752		172		(547)			—		—		2,377
Total funds	29,155		18,778		(20,664)			—		424		27,693

Society					31 March 2023	31 March 2023	31 March 2023
	At 1 April		Income		Expenditure			Transfers		Gains and			At 31 March
	2022									losses			2023
	£’000		£’000		£’000			£’000		£’000			£’000
General funds	22,743		17,520		(17,087)			—		61			23,237
Designated funds	7,456		—		(2,800)			—		—			4,656
Revaluation reserve	2,240		—		—			—		—			2,240
Pension reserve	(6,550)		—		1,101			—		1,719			(3,730)
Total unrestricted funds	25,889		17,520		(18,786)			—		1,780			26,403
Restricted funds	3,028		364		(640)			—		—			2,752
Total funds	28,917		17,884		(19,426)			—		1,780			29,155

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

18. Fund assets and liabilities

The analysis of net assets between funds is set out below:

	Group	Group	Group		Society	Society	Society
	31 March 2024				31 March 2024
	Unrestricted funds		Restricted funds		Unrestricted funds		Restricted funds
	£’000		£’000		£’000		£’000
Tangible and intangible fxed assets	13,757		1,110		12,672		1,110
Investments	9,974		—		12,420		—
Current assets	6,720		1,267		6,397		1,267
Current liabilities	(2,417)		—		(2,412)		—
Defned beneft pension liability	(3,761)		—		(3,761)		—
Total net assets at 31 March 2024	24,273		2,377		25,316		2,377

	Group	Group	Group		Society	Society	Society
	31 March 2023				31 March 2023
	Unrestricted funds		Restricted funds		Unrestricted funds		Restricted funds
	£’000		£’000		£’000		£’000
Tangible and intangible fxed assets	13,601		1,140		12,481		1,140
Investments	9,478		—		11,924		—
Current assets	10,025		1,612		9,698		1,612
Current liabilities	(3,977)		—		(3,970)		—
Defned beneft pension liability	(3,730)		—		(3,730)		—
Total net assets at 31 March 2023	25,397		2,752		26,403		2,752

The designated fund at 31 March 2024 is all represented by current assets (cash at bank) and is included in unrestricted funds above.

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

19. Restricted funds

The Society receives donations and grants that can only be used for specified purposes. The Society maintains records for each donation or grant given in this way and allocates costs against those funds. The table below summarises the types of activities the income is received in respect of. In some cases, actual restrictions are more specific than the general categories used in this table.

Group and Society					31 March 2024
	At 1 April		Income		Costs		Transfers		At 31 March
	2023								2024
	£’000		£’000		£’000		£’000		£’000
Specifc genomics research	812		0		(118)		—		694
General genomics research	36		110		(85)		—		61
Specifc other research	129		—		24		—		153
General research	317		1		(183)		—		135
MRI IT upgrade	15		—		—		—		15
Helpline service	106		—		(61)		—		45
Care services and activities	141		49		(55)		—		135
The New House	1,140		—		(30)		—		1,110
Other areas	56		12		(39)		—		29
Total restricted funds	2,752		172		(547)		—		2,377

The costs above include £10,000 (2022: £59,000) relating to capital purchases.

Group and Society						31 March 2023
		At 1 April		Income		Costs		Transfers		At 31 March
		2022								2023
		£’000		£’000		£’000		£’000		£’000
Specifc genomics research		1,039		—		(227)		—		812
General genomics research		8		159		(131)		—		36
Specifc other research		163		—		(34)		—		129
General research		347		65		(95)		—		317
MRI IT upgrade		15		—		—		—		15
Helpline service		127		40		(61)		—		106
Care services and activities		115		26		—		—		141
The New House		1,170		—		(30)		—		1,140
Other areas		44		74		(62)		—		56
Total restricted funds		3,028		364		(640)		—		2,752

The nature of the restriction on these funds can be understood from the table above with the exception of “The New House”, which represents donations that were received in prior years for the building of a block of 12 supported flats for people with epilepsy. The depreciation on the capital asset, which is still subject to the restrictions, is charged to the fund.

The prior year figures above set out the element of the 2023 Statement of Financial Activities that relate to restricted income and expenditure. All other items in the prior year SOFA relate to unrestricted funds.

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independent auditor’s report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

20. Pensions

Epilepsy Society (the Company) operates a defined benefit pension arrangement called the Epilepsy Society Pension Scheme (the Scheme) to 3 permanent employees (2023: 5). The Scheme provides benefits based on final salary and length of service on retirement, leaving service or death. The Company also operates a defined contribution scheme but this is not included in these disclosures.

The Scheme is subject to the Statutory Funding Objective under the Pensions Act 2004. A valuation of the Scheme is carried out at least once every three years to determine whether the Statutory Funding Objective is met. As part of the process the Company must agree with the Trustees of the Scheme the contributions to be paid to meet any shortfall against the Statutory Funding Objective and to pay for the future accrual of benefits.

The most recent comprehensive actuarial valuation of the Scheme was carried out as at 31 March 2022. As a result, the Schedule of Contributions has been amended, as laid out below, with future annual deficit contributions reducing slightly. The next actuarial valuation will be carried out as at 31 March 2025.

The Company plans to pay contributions of £520,000 in the year to 31 March 2024, plus the cost of the Pension Protection Levy and the expenses of operating the Scheme. This is in line with the deficit reduction contributions agreement reached by the Society and the Scheme Trustees based on the 2022 actuarial valuation, which is summarised below:

• £273,182 pa, to be paid towards the Scheme in monthly instalments on or before the 19th of each calendar month following that to which the payment relates, up to 31 March 2024; and

• £520,000 pa, to be paid towards the Scheme in monthly instalments on or before the 19th of each calendar month following that to which the payment relates, from 1 April 2024 up to 31 March 2030, with this payment increasing by 3% pa on 1 April 2025 and each 1 April thereafter.

The Scheme is managed by a board of Trustees appointed in part by the Company and in part from elections by members of the Scheme. Trustees have responsibility for obtaining valuations of the fund, administering benefit payments and investing the Scheme’s assets. The Trustees delegate some of these functions to their professional advisers where appropriate.

The effect of the judgment regarding equalisation of guaranteed minimum pensions for past transfers has been accounted for as a past service cost during the period.

There were no plan amendments, curtailments or settlements during the period.

The Scheme exposes the Company to a number of risks:

• Investment risk. The Scheme holds investments in asset classes, such as equities, which have volatile market values and while these assets are expected to provide real returns over the long-term, short-term volatility can cause additional funding to be required if a deficit emerges;

• Interest rate risk. The Scheme’s liabilities are assessed using market yields on high quality corporate bonds to discount the liabilities. As the Scheme holds assets such as equities the value of the assets and liabilities may not move in the same way;

• Inflation risk. A proportion of the benefits under the Scheme are linked to inflation. Although the Scheme’s assets are expected to provide a good hedge against inflation over the long term, movements over the short-term could lead to deficits emerging;

• Mortality risk. In the event that members live longer than assumed, a deficit will emerge in the Scheme;

• Member options. Certain benefit options may be exercised by members without requiring the consent of the Trustees or the Company, for example exchanging pension for cash at retirement. In this example, if fewer members than expected exchange pension for cash at retirement then a funding strain will emerge;

• Legislative risk. Changes in legislation could increase the value of the Scheme’s liabilities; and

• Climate risk. This may manifest itself through any of the other risks identified above, including investment and inflation risk, potentially causing a deterioration in the Scheme’s funding position.

The principal actuarial and main financial assumptions used to calculate the Scheme liabilities are:

----- Start of picture text -----
Group and Society 31 March 2024 31 March 2023
Percentage pa Percentage pa
Salary increase rate 3.05 3.05
CPI pension increases 3.00 3.00
(fixed at 3%)
CPI pension increases 3.25 3.25
(between 3% and 5%)
CPI pension increases 3.05 3.05
(maximum 5%)
CPI pension increases 2.45 2.45
(maximum 2.5%)
Discount rate 4.75 4.70
RPI increase rate 3.40 3.40
CPI increase rate 3.05 3.05
Tax free cash on 20.00 20.00
commutation
Post-retirement S3PA tables S3PA tables
mortality with CMI 2022 with CMI 2021
projections using projections using
a long-term a long-term
improvement improvement
rate of 1.25% rate of 1.25%
pa. The initial pa. The initial
addition is addition is 0.5%
0.5% pa., the pa, the 2020
2022 weight and 2021 weight
parameter parameters
is 25%. are 10%
----- End of picture text -----

The CPI for pension increases figures above set out the assumption used for pension increases dependent on the increase clause within members’ pension conditions.

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

20. Pensions (continued)

Assets held in the scheme

The Scheme invests funds in range of assets to produce an investment return. At 31 March 2024, the analysis of assets based on the valuation at that date is as follows:

Group	31 March 2024	31 March 2024	31 March 2023
	£’000		£’000
Equities	9,421		8,902
Gilts and bonds	5,212		5,126
Liability Driven Investment	6,432		6,486
Property	676		1,037
Cash	513		618
Other assets	422		1,231
Total	22,676		23,400

The actual gross return on the assets over the period was a gain of £673,000 (2023: a loss of £6,524,000). The assets do not include investment in the shares of the Society or any Group company.

Under FRS102, the expected return on assets is the same as the discount rate used to value the liabilities. However, the assets and liabilities will not generally change in the same manner over time and are also unlikely to change in the same way as other measures of the funding position such as that used for scheme funding or assessing solvency.

Amounts recognised in the Balance Sheet as at 31 March 2024

Amounts recognised in the Balance Sheet as at 31 March 2024
Group		31 March 2024		31 March 2023
		£’000		£’000
Fair value of employer assets		22,676		23,400
Present value of funded liabilities		(26,437)		(27,130)
Net liability		(3,761)		(3,730)

Amounts recognised in the Statement of Financial Activities for the year ended 31 March 2024

Group		31 March 2024	31 March 2024	31 March 2023
		£’000		£’000
Current service cost		23		36
Past service cost		—		—
Interest on Scheme liabilities		1,236		955
Interest on Scheme assets		(1,067)		(798)
Total		192		193

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

20. Pensions (continued)

Re-measurements for the year ended 31 March 2024

Re-measurements for the year ended 31 March 2024
Group		31 March 2024		31 March 2023
		£’000		£’000
Gain/(loss) on scheme assets in excess of interest		(394)		(7,322)
Experience gains/(losses) on liabilities		(77)		622
Gains/(losses) from changes to assumptions:
Due to changes in demographic assumptions		177		54
Due to changes to fnancial assumptions		162		8,365
Total actuarial gains/(losses) per SOFA		(132)		1,719

Reconciliation of fair value of the Society’s assets

Group and Society		31 March 2024		31 March 2023
		£’000		£’000
Fair value of assets at 1 April		23,400		30,290
Interest on assets		1,067		798
Employer contributions		293		1,294
Contributions by Scheme participants		7		10
Benefts paid		(1,687)		(1,668)
Administration costs		(10)		(2)
Return on scheme assets less interest		(394)		(7,322)
Fair value of assets at 31 March		22,676		23,400

Reconciliation of the Society’s defined benefit obligation

Group		31 March 2024		31 March 2023
		£’000		£’000
Defned beneft obligation at 1 April		(27,130)		(36,840)
Current service cost		(13)		(34)
Past service cost		—		—
Contribution by Scheme participants		(7)		(10)
Interest cost		(1,236)		(955)
Benefts paid		1,687		1,668
Experience gains/(losses) on liabilities		(77)		622
Changes to demographic assumptions		177		54
Changes to fnancial assumptions		162		8,365
Defned beneft obligation at 31 March		(26,437)		(27,130)

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

20. Pensions (continued)

Sensitivity of the value of liabilities

As with most defined benefit pension schemes, the value of the liabilities in the Scheme would be different if assumptions were changed. The table below sets out the impact on the Scheme’s liabilities if the main assumptions were changed:

Adjustments to assumptions	Approximate (decrease)/
	increase in liabilities
	£’000
Discount rate — increased by 0.5%	(1,356)
Infation — increased by 0.5%	533
Commutation — remove 20% allowance	215

21. Operating leases

The Society has a number of non-cancellable operating leases for printers and office equipment. Details are set out below:

Adjustments to assumptions		31 March 2024	31 March 2024	31 March 2023
		Group		Group
		£’000		£’000
IT and offce equipment
Within one year		21		21
One year or more but less than fve years		63		85
Total operating leases		84		106

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Notes to the Financial Statements for the year ended 31 March 2024 (continued)

22. Subsidiaries

The Society owns 100% of the share capital in two subsidiaries, Epilepsy Enterprises Limited and NSE Facilities Limited, who gift aid any taxable profits to the Society. Both subsidiaries’ registered office and place of business is the same as the Society as set out on page 68. A summary of their activities and results for the year is set out below:

Epilepsy Enterprises Ltd

The main activities of the company are the sale of goods and services to raise funds for the charity and other related trading activities. A summary of its Income Statement and a summarised Statement of Financial Position are set out below:

Statement of income		Year ended		Year ended
		31 March 2024		31 March 2023
		£’000		£’000
Turnover		23		19
Cost of sales		(10)		(4)
Administrative expenses		(2)		(4)
Proft on ordinary activities		11		11

The Statement of Changes in Equity recognised a Gift Aid payment of £4,980 (2022: £2,199).

Statement of Financial Position		As at		As at
		31 March 2024		31 March 2023
		£’000		£’000
Stock		20		20
Debtors		—		3
Cash at bank		10		6
Creditors: amounts falling due within one year		(13)		(11)
Total net assets		17		18
Share capital (2 ordinary shares of £1 each)		—		—
Accumulated proft		17		18
Total reserves		17		18

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Notes to the Financial Statements for the year ended 31 March 2024 (continued)

22. Subsidiaries (continued)

NSE Facilities Ltd

This company is inactive other than owning the building, the Gowers Centre, from which medical services are provided to the UCLH NHS Foundation Trust. A summary of its Income Statement and a summarised Statement of Financial Position are set out below:

Statement of income		Year ended		Year ended
		31 March 2024		31 March 2023
		£’000		£’000
Turnover		—		—
Operating costs		(38)		(37)
Loss on ordinary activities		(38)		(37)

The Statement of Changes in Equity recognised a Gift Aid payment of £nil (2021: £nil).

Statement of Financial Position		As at		As at
		31 March 2024		31 March 2023
		£’000		£’000
Tangible fxed assets		1,085		1,120
Amounts due from Subsidiaries		—		—
Cash at bank		302		304
Creditors: amounts falling due within one year		(2)		(2)
Total net assets		1,385		1,422
Share capital		2,446		2,446
Accumulated loss		(1,061)		(1,024)
Total reserves		1,385		1,422

The share capital comprises 2 ‘A’ ordinary shares of £1 each and 2,446,000 ‘B’ ordinary redeemable shares of £1 each. The tangible fixed assets related wholly to buildings are reported at cost less accumulated depreciation.

23. Related party transactions

During the year, the Society received a Gift Aid distribution from Epilepsy Enterprises Limited of £10,794 (2023: £4,980). At 31 March 2024, Epilepsy Enterprises Limited owed the Society £9,845 (2023: £5,005) and the balance between NSE Facilities Limited and the Society was £nil (2023: £nil).

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Epilepsy Society | Annual report 2023/2024 | Independent Auditor’s Report

Trustees, officers and advisors

Registered Office:

Chesham Lane, Chalfont St Peter, Buckinghamshire SL9 0RJ

Patron:

His Majesty, The King

President:

The Rt Hon Countess Howe

Board of Trustees

Chairman (until 30 June 2023). Resigned as Trustee 13 December 2023 Chairman (from 1 July 2023) Treasurer (appointed 10 July 2023) (Resigned 31 October 2023) (Resigned 13 December 2023) (Resigned 31 October 2023)

Peter Worthington Catherine Alcock Chairman (from 1 July 2023) Andrew Gray Treasurer (appointed 10 July 2023) Deborah Wheeler Andrew George (Resigned 31 October 2023) James Hagan Stephen Smith (Resigned 13 December 2023) Madani Sow (Resigned 31 October 2023) Andrew Gosling Tracie Coultas-Pitman Jacqueline Sullivan Rae Avatar Barnett (Appointed 13 December 2023) Nick Grant (Appointed 13 December 2023) Hannah Purves (Appointed 13 December 2023) Karen Skinner (Appointed 13 December 2023) Robin Woolfson (Appointed 13 December 2023)

Management Board

Chief Executive Clare Pelham Chief Financial Officer Andy James Medical Director Ley Sander Director of Land and Estates Kevin Bourner Director of Fundraising Gordon Craig Development Director Jonny Anders-Cannon Acting Director of Care Services Rebecca Salvatierra

External Auditors: Crowe UK LLP 55 Ludgate Hill London EC4M 7JW

Bankers:

National Westminster Bank Plc

Legal Advisors:

B P Collins 32–38 Station Road Gerrards Cross Buckinghamshire SL9 8EL

B P Collins Bevan Britten LLP 32–38 Station Road Fleet Place House Gerrards Cross 2 Fleet Place Buckinghamshire SL9 8EL London EC4M 7RF Eversheds Sutherland (international) LLP Fieldfisher LLP 1 Wood Street 2 Swan Lane London EC2V 7WS London EC4R 3TT

68

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