## **BRITISH EPILEPSY ASSOCIATION** 

**(A company limited by guarantee)** 

**TRUSTEES’ REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 

**REGISTERED NUMBER: 00797997 CHARITY NUMBER: 234343** 



## **CONTENTS** 

||Page|
|---|---|
|**Chair's report**|1|
|**Honorary Treasurer’s report**|2|
|**Trustees’ annual report**|3 – 7|
|**Strategic report**|8-21|
|**Independent Auditor’s report**|22 - 25|
|**Statement of financial activities**|26|
|**Balance sheet**|27|
|**Statement of cash flows**|28|
|**Notes to the financial statements**|29 – 45|
|**Glossary**|46|





## **Chair’s report** 


Last year I was able to report that despite facing the most extraordinary challenges from the impact of Covid-19, the charity had emerged in good shape and ready to face the challenges of a post Covid world. Although we are not there yet, 2021 has been more successful on so many fronts than we had hoped. As you will see from June Massey’s Honorary Treasurer's report, we ended the year with a small financial surplus, after having set a deficit budget in order to maintain services. I would like to say a big thank you not just to all our fundraising staff who have worked to deliver this 38% increase in our income over last year but to every single one of our members, supporters and donors who have given money, undertaken sponsored events or online challenges. Without your generosity we could not deliver the support to people with epilepsy, their families, friends and carers which they need now more than ever. 

2021 has been a year of outstanding achievement in our work to improve the 

quality and availability of healthcare services for people with epilepsy and to improve awareness and understanding of the condition. None of this has been easy in the current climate. I would encourage you to read the full detail of our activities in the trustees’ report as I can only give a flavour of this achievement here by mentioning a few highlights. 

Throughout the year we continued to engage with people by holding 126 nationwide virtual group meetings and 289 local virtual group meetings highly praised by those who attended and which provided them with the opportunity to stay connected at times when face to face contact was not possible. We saw an increase of 600% in the online coverage and a 58% increase in national media coverage for our charity and its work. We have also increased our presence and influence on social media across six different social media platforms. Throughout the year we have maintained updates on coronavirus and, representing the authentic voice of people affected by epilepsy, made an impact on a range of topics and issues including the DHSC Covid-19 vaccination campaign, medical cannabis, the consistency of supply of epilepsy medication and protecting epilepsy health services during the Covid-19 emergency. 

Organisationally, 2021 has been a transitional year as we have streamlined our operational activity into five new departments and moved to a blend of home and office based working for staff. In April we also welcomed Rebekah Smith as our new Deputy Chief Executive. Rebekah has been at the forefront of much of this work. We have also been looking at how the delivery of our services has changed over the course of the pandemic and what lessons we can learn for the future. The focus of all of this review process has been to both improve the services we offer and to better tailor what we offer to differing individual needs. As we move forward we will be looking at opportunities to expand and improve our current range of services in a sustainable manner wherever possible. 

It was my great privilege to be re-elected as Chair of the Council of Management and I want to take this opportunity to thank my fellow Council Members for their continued support and also for their hard work and dedication throughout the year, and particularly my Vice Chair, Jane Riley and our Honorary Treasurer, June Massey.  During the course of the year Dr Jim Morrow, Jan Follett and Torie Robinson left Council; we thank them for their input and wish them well for the future. Avril Coelho, Nicholas Hutton and Joanne Greer joined the Council in June and bring with them new perspectives on our deliberations. I am also pleased to report that Beryl Sharlot has been able to play a more active role in our work after a long period of illness and Gavin Barlow has also been able to resume his role after serious surgery at the end of the year. Finally, I would like to thank Philip Lee, his senior management team and all our staff who have worked so hard throughout the year and without whom none of what we have achieved would have been possible. 

In closing, I am pleased to be able to report that the Association remains in a strong position with a sound financial base and well placed to continue its valuable work in a still uncertain future. 





**Richard Chapman Chair, Council of Management 12 April 2022** 

1 



## **Honorary Treasurer’s report** 


The day-to-day management of the charity’s finances continues to be expertly and efficiently handled by our finance staff led by Tony Spinks. The Council takes a more strategic view of financial progress, monitoring and evaluating performance against the forecasts made in the annual revenue budget and other plans. 

After a very difficult financial year in 2020, which saw the COVID-19 pandemic significantly disrupt the charity’s income generating potential, the Council of Management adopted a particularly cautious approach to the financial prospects for 2021 and beyond. In the event, 2021 saw a welcome recovery in most of our areas of income especially fundraising events. This was driven by our investment in virtual and digital fundraising. 

Total income in 2021 was £3,314,918. This compares to £2,395,053 in 2020. Total spending in 2021 was £3,299,536. This compares to £3,126,323 in 2020. 

Across all funds there was a surplus of income over expenditure of £15,382 (2020: deficit of £731,270). After accounting for an unrealised gain of £212,184 on the value of investments (2020: unrealised loss of £185,793) the net movement in funds for the year was £227,566 (2020: £917,063). Total funds at year end are £3,672,153 (2020: £3,444,587). 

Spending on charitable activities in 2021 was £2,005,297 compared to £2,101,915 in 2020. Of this total we spent £1,523,548 (76%) on improving the quality of healthcare services for people with epilepsy and £481,749 (24%) on improving awareness and understanding of the condition. We also spent £1,167,079 on raising funds in 2021 compared with £1,024,408 in 2020. 

The charity’s reserves policy (revised in 2020) is that the Association shall maintain a level of unrestricted financial reserves that falls within a range of between four months and twelve months gross total unrestricted income based on the following year’s revenue budget forecast. If the level of unrestricted financial reserves moves outside of these parameters, then the Council of Management will take appropriate action. 

Based on the 2022 total unrestricted income of £3,525,176 forecast in the 2022 revenue budget, the range of unrestricted reserves should be between £3,525,176 (12 months cover) and £1,175,059 (4 months cover). At the end of 2021, the unrestricted reserve funds amounted to £2,543,498 (2020: £2,423,069). At this level they represent 8.66 months of unrestricted income and are therefore within the boundaries set by the reserves policy. 

At the end of the year the charity held total reserves valued at £3,672,153. This compares to total reserves of £3,444,587 at the end of 2020. In addition to the unrestricted reserves mentioned above, £468,206 of the total was held for designated spending in the future and £660,449 was held for restricted purposes. 

I’m delighted to be able to report such a strong financial result for the charity in 2021. The recovery in our income reflects the hard work of all our staff and volunteers as well as the generosity and loyalty of our tens of thousands of wonderful supporters. Thank you. 

Despite this, there is no room for complacency. These remain volatile and unpredictable times.  Mindful of their responsibilities, the trustees will continue to monitor the financial impact of the pandemic on the charity, and they will take whatever action is necessary to ensure the organisation remains viable. 


**June Massey Honorary Treasurer 12 April 2022** 

2 



## Trustees’ annual report 

The trustees of British Epilepsy Association, collectively known as the Council of Management or ‘the Council’, has pleasure in presenting its Trustees’ Annual Report incorporating the Strategic Report and Audited Accounts for the year ended 31 December 2021. 

## **Structure, governance and management** 

The organisation was first set up as a charitable trust and registered at the Charity Commission on 5 December 1950. The Association became a company limited by guarantee on 25 March 1964 (registered in England, number 00797997) and was re-registered at the Charity Commission on 5 August 1964 (registered charity number 234343). The Association is also registered for Value Added Tax (Registration No. 183 1032 39). 

The Association is constituted under a Memorandum and Articles of Association. The current Memorandum and Articles of Association were adopted by the members on 17 June 2006 and were last amended by the members on 29 June 2021. 

The Association does not have share capital, cannot pay dividends and must utilise all of its funds to further its stated charitable objectives. Under the terms of clause 7 of the Memorandum of Association every member, as defined by Article 2 of the Articles of Association, is liable to contribute a sum if necessary and not exceeding £1 in the event of the Association being wound up. 

At 31 December 2021 there were 8,637 active members (2020: 8,944), including 369 life members (2020: 370). 

## **Epilepsy Action** 

In May 2002 the Association began using the working name, _Epilepsy Action_ . The charity keeps the name _British Epilepsy Association_ but uses the working name _Epilepsy Action_ across its range of activities. It also uses the names _Epilepsy Action Cymru_ and _Epilepsy Action Northern Ireland_ for its work in those two countries of the United Kingdom. 

## **Council of Management** 

The Council of Management is the governing body of the Association. It usually meets six times a year and it sets the policy and strategic direction of the charity. It is also responsible for overseeing the sound management of the whole Association and for ensuring the Association’s policy is carried out by the staff through day-to-day operational activity supervised by the Chief Executive. 

The Council is made up of a maximum of 16 members of the Association who have been elected by the membership. One third of the Council members retire by rotation each year. Persons seeking election or re-election must be nominated by two subscribing members of the Association. The Association is proud of its open and democratic tradition, which enables the charity to have the benefit of a Council which includes people with epilepsy, carers, professionals and others interested in the condition. 

Article 24 allows the Council to appoint up to two additional Council members, to hold office for a maximum of three years, subject to annual confirmation by the Annual General Meeting of the Association. No Council members appointed in this way held office during 2021. 

In accordance with the Articles of Association, the following members of Council are retiring at the Annual General Meeting on 14 June 2022: - Peter Clough, Diane Hockley, Jane Riley, Beryl Sharlot and Stephen Timewell. 

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The people who served on the Council of Management between 1 January and 31 December 2021 were: 


**----- Start of picture text -----**<br>
Chair  Richard Chapman<br>-<br> re-elected to Council 29 June 2021<br>Vice Chair Jane Riley<br>Honorary Treasurer  June Massey Cert Ed DipSpLD AMBDA (FE/HE)<br>-<br> re-elected to Council 29 June 2021<br>Gavin Barlow BSc Michael Harnor MEd MSc BEd (Hons) ACP MIHPE<br>Jayne Burton  Sarah Lawson<br>-<br> re-elected to Council 29 June 2021<br>Peter Clough  Jim Morrow BA (Hons) MD PhD FRCP<br>-<br> retired from Council 29 June 2021<br>Avril Coelho  Torie Robinson<br>- -<br> elected to Council 29 June 2021  resigned from Council 1 December 2021<br>Jan Follett Cert Ed BA (Hons)  Beryl Sharlot<br>-<br> resigned from Council 17 February 2021<br>Joanne Greer  Stephen Timewell<br>-<br> elected to Council 29 June 2021<br>Diane Hockley Ian Walker<br>Nicholas Hutton<br>- elected to Council 29 June 2021<br>**----- End of picture text -----**<br>


## **Trustee induction and trustee training** 

Each newly elected Council member receives guidance notes about their role and responsibilities as a charity trustee and company director as part of a comprehensive induction process. Individual trustees attend conferences, seminars and other training and learning opportunities as necessary through the year to update their knowledge about their role and responsibilities as charity trustees and company directors. Training and personal development needs are reviewed as part of the annual appraisal of the Council and its members. 

## **Council appraisal and corporate governance** 

The Council of Management carries out a system of trustee annual appraisal to ensure the continued efficiency and effectiveness of the Council. A Council committee on corporate governance further supports this objective. The Council of Management has adopted ‘ _Good Governance – a code for the voluntary and community sector_ ’, 2[nd] edition, October 2010; and is “ _taking steps to improve governance based on the Code_ ”. This Code provides the benchmark for Council appraisal. 

4 



## **Council of Management committees and advisory panels** 

There were three Council committees during 2021: Corporate Governance, Finance and Strategic Policy, and the Standing Committee. Council also established a Council Working Practices Review Group on 13 July 2021. Each Committee and the Working Group has terms of reference and a membership that is approved by the Council and reviewed on an annual basis. Council members also serve on a Staff Appeals Panel to hear appeals from staff in relation to grievance or disciplinary disputes. There were no appeals to the panel in 2021. Membership of the Council’s Committees, the Working Group and the Council’s Staff Appeals Panel in 2021 is listed below. 


**----- Start of picture text -----**<br>
Corporate Governance Committee  Finance & Strategic Policy Committee<br>(maximum 6 members) (6-8 members)<br>Jayne Burton Committee Chair from 6  Jane Riley Committee Chair<br>September 2021 Council Vice Chair ex officio member<br>of Committee<br>June Massey Committee Chair to 6  Richard Chapman Council Chair ex officio member of<br>September 2021 Committee<br>Richard Chapman Council Chair ex officio member of  June Massey Honorary Treasurer ex officio<br>Committee member of Committee<br>Diane Hockley Gavin Barlow<br>Sarah Lawson Peter Clough<br>Torie Robinson To 13 July 2021 Michael Harnor<br>Ian Walker From 13 July 2021 Sarah Lawson<br>Stephen Timewell<br>**----- End of picture text -----**<br>



**----- Start of picture text -----**<br>
Council Working Practices Review Group  Staff Appeals Panel<br>(Maximum 5 members) (Maximum 6 members)<br>Ian Walker  From 15 July 2021 – elected Group  Jane Riley  Panel Chair – Council Vice Chair ex<br>Chair from 12 October 2021 officio member of panel<br>Jane Riley  Council Vice Chair – ex officio  Gavin Barlow<br>member of group – from 13 July<br>2021<br>Peter Clough From 15 July 2021 Jayne Burton<br>Avril Coelho From 15 July 2021 Sarah Lawson<br>Nicholas Hutton From 7 December 2021 Torie Robinson To 1 December 2021<br>Torie Robinson From 15 July – 1 December 2021 Beryl Sharlot<br>**----- End of picture text -----**<br>


||**Standing Committee**<br>(Maximum 5 members)|
|---|---|
|Richard Chapman<br>_Committee Chair – Council Chair ex_<br>_officio member of committee_||
|Jane Riley|_Council Vice Chair ex officio member_<br>_of committee_|
|June Massey|_Honorary Treasurer ex officio_|
||_member of committee_|



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## **Advisory Panels** 

Advisory Panels have been set up by the Council of Management to advise and guide the Association in its work. Each panel has terms of reference and a membership that is approved by the Council and reviewed on an annual basis. These include a Health and Clinical Advisory Panel, a Research Advisory Panel, a Scientific Awards Panel and a Women’s Advisory Panel. The performance of each panel was critically evaluated during 2021 according to a set of performance criteria. Subsequently, the Council confirmed that each panel should continue to operate. Membership of the Advisory Panels during 2021 is listed below. 


**----- Start of picture text -----**<br>
Health and Clinical Advisory Panel<br>Professor Markus Reuber MD PhD  Dr Colin Dunkley   Dr Owen Pickrell  – appointed 11 May<br>FRCP – Chair 2021<br>Dr Aza Abdulla FRCP (UK) FRCPI  Ms Jo Geldard   Professor Mark Richardson  – appointed<br>MSc (Immun) MSc (Med Ed)  11 May 2021<br>Dr Richard Appleton LRCP MRCS  Dr Hayley Gorton   Mrs Julie Rigby MSc BSc (Hons)<br>MBBS DCH MA (Oxon) FRCP  MCSP<br>FRCPCH<br>Dr Manny Bagary BSc MBBS  Ms Christine Hanson  Mr Richard Selway MA MMedSci MB<br>MRCPsych PhD BChir BSc FRCS(SN)<br>Professor Martin Brodie MB ChB  Dr Dan Hindley  Professor Stefano Seri MD FRCP<br>MRCP FRCP<br>Professor Richard Chinn  – appointed 11  Simon Keller  – appointed 11 May  Professor Phil Smith MD FRCP<br>May 2021 2021<br>Dr Hannah Cock BSc FRCP MD Professor Steven Kemp  – appointed 11  Dr Rhys Thomas<br>May 2021<br>Dr John Craig   Professor Sayeed Khan MBBS   Mr Martin Tisdall<br>BMedSci  DGM CMIOSH FRCGP<br>FFOM FRCP FRSA DM<br>Professor Helen Cross MB ChB PhD  Dr John Paul Leach MD FRCP Ms Bernie Waldron RSCN MSc<br>FRCP FRCPCH<br>Dr Anita Devlin  – appointed 11 May 2021 Professor Tony Marson  Professor Matthew Walker MA MB<br>BChir FRCP PhD<br>Dr JM Dickson   Dr Jim Morrow BA (Hons) MD PhD  Dr Ingram Wright BA (Hons) PhD D<br>FRCP  Clin Psy<br>**----- End of picture text -----**<br>



**----- Start of picture text -----**<br>
Research Advisory Panel Scientific Awards Panel Women’s Advisory Panel<br>Erica Chisanga  Dr Khalid Hamandi  Dr Amanda Freeman MB BS FRCP  –<br>retired 10 May 2021<br>Dr Sarah Collard  Emily Holmes  Ms Beth Irwin<br>Ms Helen Coyle RGN BA (Hons)  Professor Michael Johnson  Dr Jim Morrow BA (Hons) MD PhD<br>MPhil FRCP<br>Dr Adina Lew  Stephanie Kilinc  Rebecca Bromley  – appointed 11 May<br>2021<br>Dr Dougall McCorry Melissa Maguire Dr John Craig – appointed 11 May 2021<br>Dr Ian Minshall MB ChB DRCOG  Linda Mayhew  Kim Morley  – appointed 11 May 2021<br>FPCert JCPTGP<br>Deb Pal Nigel Bennett Dr Arjune Sen – appointed 11 May 2021<br>Professor Howard Ring BSc MB BS  Fiona McKinnon  Dr Rohit Shankar  – appointed 11 May<br>MRPsych 2021<br>Rohit Shankar  Rajiv Mohanraj  Dr Sophia Varadkar  – appointed 11 May<br>2021<br>Prof Sanjay Sisodiya  Leone Ridsdale  Dr Janine Winterbottom  – appointed 11<br>May 2021<br>Andrew Trevelyan<br>**----- End of picture text -----**<br>


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## **Epilepsy Action Cymru and Epilepsy Action Northern Ireland** 

The Association operates in Wales as _Epilepsy Action Cymru_ and in Northern Ireland as _Epilepsy Action Northern Ireland_ . A National Advisory Council for Wales and a National Advisory Council for Northern Ireland provide advice, guidance and support for the charity’s work in these countries. Both Councils have terms of reference and a membership that is approved by the Council of Management and which is reviewed on an annual basis. Membership of the National Advisory Councils during 2021 is listed below. 


**----- Start of picture text -----**<br>
National Advisory Council for Northern Ireland  National Advisory Council for Wales<br>(Maximum 15 members) Cyngor Ymgynghorol Cenedlaethol Cymru<br>(Maximum 15 members)<br>Dr John Craig - Chair Dr Khalid Hamandi – Chair<br>Ms Ena Bingham RSCN RGN RM  – retired 30 September 2021 Ms Louise Capeling<br>Mr David Gilmour  – retired 6 November 2021 Mr Michael Dix-Williams<br>Dr Michael Kinney Dr Frances Gibbon<br>Maura Mackie Dr Dave Minton<br>Ms Sarah McCann Ms Malisa Pierri<br>Megan McCarthy Dr Rob Powell<br>Ms Deborah McCrudden Siôn Glyn Pritchard  – appointed 5 October 2021<br>Dr Jim Morrow BA (Hons) MD PhD FRCP Ms Shelia Shepley<br>Ms Edna O’Neill Jeanette Spiers – appointed 5 October 2021<br>Dr Louise Rusk Mr Ian Walker<br>Mr Derick Woods BA BSc DipEd Mr Craig Williams<br>Mrs Marion Woods<br>**----- End of picture text -----**<br>


## **Trustees’ interests** 

Members of the Council are charity trustees as defined by the Charities Act. Since the Association is a company limited by guarantee, persons elected or appointed to its Council are also directors and are registered as such in accordance with the Companies Act. Council members may claim for reasonable expenses incurred in undertaking the Association’s business but they receive no remuneration or other financial benefit. All members of the Council have confirmed that they do not have and have not had any beneficial interest in any contract with the Association apart from the disclosures made within note 20 to the accounts. The Association maintains a publicly available register of trustees’ interests. 

7 



## Strategic report 

The following report includes the detail required by the Companies Act 2006 with regards to the strategic report. 

## **Risk assessment** 

The Council has assessed the major risks to which the Association is exposed, in particular those related to the operations and finances of the charity. The Council is satisfied that management and control systems are in place to mitigate the Association’s exposure to the major risks. The Council reviews these risks and controls at least four times each year. 

Risks are identified and assessed by the trustees based on their likelihood of happening and the severity of their impact if they were to happen. Risks are scored before action is taken (gross risk score) and again after action is taken (net risk score). On 7 December 2021, 12 risks were identified and assessed with a net risk score of 15 or higher making them the most significant risks to the charity. The 2021 dates are valid at the time the risk register was last reviewed. These risks, their potential impact and the actions taken in response to them are as follows: 

|**Description of**<br>**risk**|**Potential impact**|**Actions taken to mitigate risk**|**Net risk score**<br>**after action**<br>**taken**|
|---|---|---|---|
|New CRM database<br>project fails to<br>deliver on time or<br>runs over budget.|Fundraising, membership and<br>stakeholder engagement<br>compromised; financial and<br>service targets missed; higher<br>cost to complete project.|Exhaustive and extensive<br>acquisition process in place with<br>Council sign off. Revised project<br>management structure in place.<br>Project risk management in place.<br>Reports to Council at every<br>Council meeting. Senior<br>management team review at every<br>meeting.|24|
|Failure of one or<br>more top five<br>sources of income,<br>(delivers less than<br>80% of target).|Pressure on cash flow; loss of<br>expected and planned income;<br>reduced spending or use of<br>reserves to balance finances;<br>services reduced.|Major sources of income are<br>identified and closely monitored.<br>Legacy analysis and pipeline tool to<br>help accuracy in predicting legacy<br>income. Maintain a broad base of<br>fundraising. Risk based reserves<br>policy based on future income.<br>F&SP Committee regularly review<br>fundraising performance and plans.<br>Fast adoption of new initiatives to<br>replace fundraising hit by<br>Coronavirus, (e.g. Facebook<br>Challenges). 2021 revenue budget<br>has reset forecasts to more<br>realisticlevels.|20|
|Turbulent macro-<br>economic<br>conditions giving<br>rise to financial<br>crisis; inflation;<br>unemployment;<br>public sector<br>austerity; less<br>personal disposable<br>income; falling<br>stock markets.|Reduced income; higher costs;<br>reduced spending; use of<br>reserves to balance finances;<br>increase in demand for services;<br>reduction in service delivery.|Monitor economic forecasts and<br>geopolitical events and take these<br>into account in financial and<br>business planning. Risk based<br>reserves policy provides a financial<br>cushion against short term<br>volatility. Diverse income<br>generation spreads the risk of<br>failure. Three year perspective on<br>2021 revenue budget.|20|



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**----- Start of picture text -----**<br>
Income from  Reputational damage; lower  Fundraising delivery and monitoring  20<br>fundraising falls  income than expected and  plan for 2021 approved by Council<br>below expectations. planned for; reduced spending  on 13 April 2021. Annual revenue<br>and/or depleted reserves to  budget. Annual business plan.<br>balance finances; disruption to  Individual fundraising project plans.<br>long term plans; lowered  Monitoring by F&SP Committee.<br>stakeholder morale.  Facebook Challenges delivered<br>above expectation in Q1 of 2021.<br>2021 revenue budget resets<br>forecasts and expectations.<br>Failure to comply  Financial penalties imposed by  Director of Corporate Services  20<br>with Data  regulators; suspension or loss  appointed Data Protection Officer.<br>Protection law and  of license; reputational damage;  GDPR training for all staff. GDPR<br>regulation.  loss of public confidence; loss of  awareness for volunteers. GDPR<br>income and support.  permission renewals process in<br>place. Ensuring new CRM database<br>is GDPR compliant.<br>Investment in  Pressure on cash flow; lower  Fundraising delivery and monitoring  16<br>Individual Giving  income than expected and  plan for 2021 approved by Council<br>fundraising delivers  planned for; reduced spending  on 13 April 2021. Individual Giving<br>less than 80% of  and/or depleted reserves to  plan in place; phased<br>targets.  balance finances; disruption to  implementation with testing<br>long term plans; lowered  enables active adjustment;<br>stakeholder morale; services  performance is monitored closely;<br>reduced.  reserves policy reflects potential<br>volatility of income; F&SP<br>Committee regularly review<br>fundraising performance and plans.<br>Public loses  Loss of donors; loss of  Registered with the Fundraising  16<br>confidence in  supporters; lower income than  Regulator and signed up to its code<br>Epilepsy Action  expected and planned; reduced  of good practice. Regular and open<br>fundraising.  spending or use of reserves to  communications with fundraising<br>cover shortfall.  supporters and the public.<br>A major successful  Fundraising less effective;  Ensure profile of Epilepsy Action is  15<br>competitor  potential loss of income;  at least maintained through<br>appears, (e.g. a new  reduced public profile;  proactive PR work. Focus on our<br>high profile cause  reduction in support; reduction  distinctive advantages. Ongoing<br>or condition).  in service users; reduced  monitoring for competitive threats.<br>influence and authority.<br>Adverse changes in  NHS priorities change; NHS re- Monitor developments. Seek to  15<br>NHS policy or  organised; epilepsy not a  influence policy and practice<br>practice.  service priority; commissioning  directly and through alliances, (e.g.<br>opportunities diminish; demand  MHRA and QOF changes,<br>for charity's services increases.  specialised commissioning, NICE<br>guidelines review). Sustain support<br>for Westminster APPG on epilepsy<br>and sustain health policy<br>campaigning.<br>Significant loss of  Reputational damage; loss of  Continuing plan for membership  15<br>membership.  mandate and authority;  development in place for 2021<br>weakened influence; lower  addressing recruitment, retention<br>income; lowered stakeholder  and administration.<br>morale; accelerating loss of<br>members.<br>**----- End of picture text -----**<br>


9 



|Cyber attack.|Reputational damage; loss of<br>public and donor confidence;<br>disruption to services; damage<br>to digital infrastructure; website<br>lost or disabled; social media<br>disabled; cost of recovery.|IT covered in disaster recovery<br>plan; anti-virus software in place.<br>Staff minded to be alert to<br>potential threats. Communications<br>and Digital Engagement department<br>focuses expertise and cyber attack<br>awareness.|15|
|---|---|---|---|
|IT systems failures.|Systems fail to meet operational<br>need; email system collapses; IT<br>obsolete; IT supplier fails; loss<br>or corruption of data; data<br>protection law breach.|Systematic updating of IT;<br>comprehensive back up procedures<br>in place; due diligence completed<br>on suppliers; services formally<br>contracted; monitoring of data<br>protection law and staff training in<br>compliance; IT covered in disaster<br>recovery plan.|15|



## **Coronavirus (Covid-19)** 

Although Coronavirus (Covid-19) continued to have an impact on the charity during 2021, the steps taken by the charity during 2020 and through 2021 have helped to mitigate this - whether this be in fundraising, service delivery, operational organisation or corporate governance. The trustees are satisfied that the impact of Covid-19, will not impact on the charity’s ability to continue in operational existence for the foreseeable future. 

## **Subsidiary companies** 

The Association has three wholly owned subsidiary companies. Epilepsy Action and Epilepsy U.K. are both dormant companies. BEA Trading Limited is engaged in fundraising activities, the distribution of Christmas cards, associated gifts and the promotion of BEA insurances. More information about the subsidiary companies can be found in note 13 to the accounts. 

## **Co-operation with other charitable organisations** 

The Association is an active member of the International Bureau for Epilepsy (IBE), the Neurological Alliance, the Disability Benefits Consortium and National Voices. The Association is also a member of the National Council for Voluntary Organisations (NCVO), the Association of Medical Research Charities (AMRC), the Institute of Fundraising and the Charity Finance Group. 

## **Public benefit** 

The trustees have referred to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing the Association’s aims, objectives and activities and this report seeks to comply with that guidance by clearly explaining and illustrating how the charity delivers public benefit. 

## **Information about the charity’s fundraising** 

The charity’s fundraising strategy is outlined in a document ‘Epilepsy Action fundraising delivery and monitoring plan, 2021’. A copy of the document has been made available to every Council member. The document supports Council members in their role of overseeing fundraising in line with Charity Commission guidance (CC20, ‘Charity fundraising: a guide to trustee duties’). It describes how fundraising is managed and overseen in order to ensure it is in the charity’s best interests and compliant with the law and best practice. It outlines each area of fundraising the charity undertakes and provides more information in relation to that area of fundraising. 

- Income generated from fundraising activities is critical to the charity’s wellbeing. Fundraising is broken down into the following key areas: fundraising and community events, legacies, membership subscriptions and donations, trusts and funds, direct marketing, individual donations, industry and commerce, lotteries, local services and trading activities. 

- The charity works with a number of professional fundraisers. These include Sterling Management, an external lottery manager. 

- The charity strives for the highest possible standards in fundraising and ensures all its staff, volunteers and trustees adhere to both legal obligations and best practices laid down by the following: 

10 



- Institute of Fundraising 

- The Fundraising Regulator 

- Gambling Commission 

- Information Commissioner’s Office (ICO) 

- Action Fraud 

- HM Revenue and Customs (HMRC) 

- Charity Commission 

- Charity Commission for Northern Ireland (CCNI) 

- Scottish Charity Regulator (OSCR) 

The charity only works with professional fundraising organisations that also meet these standards. It will not enter into a partnership with any external fundraising organisation that does not meet these requirements. 

- There were no recorded incidents of failure by the charity, or by any person acting on its behalf, to comply with fundraising standards in 2021. 

- The charity monitors the fundraising activity of people acting on its behalf, principally through: 

   - The provision of support, advice and resources to anyone acting on the charity’s behalf. 

   - Fundraising practices and procedures mutually agreed with anyone acting on the charity’s behalf. 

   - Spot checks and sampling of fundraising activities. 

- The charity received no complaints about fundraising activity in 2021 (2020: nil complaints). 

- The charity has a policy on working with vulnerable supporters. Any agency acting on behalf of the charity is required to demonstrate it has policies and practices in place to ensure vulnerable supporters are safe and that the charity is made aware of their vulnerability. 

- The charity and its principle fundraising agencies have in place agreed standards to prevent intrusion into personal privacy. The charity only asks for the personal information that is required in order to fulfil the actions agreed with the individual. 

- The charity’s telephone fundraising partner has standards in place to limit the number of calls made to any individual. The same agency also has placed maximum limits on the number of times any individual is asked for financial support in a call. In any event, no telephone fundraising campaigns took place in 2021. 

- All donors are made aware in fundraising communications of how they can, in a single action, stop receiving such communications in future, or alter the ways in which the charity communicates with them. This includes being able to stop all future contact from the charity. 

## **Indemnity insurance** 

Subject to the provision of the Companies Act 2006, every trustee and officer is indemnified against any liability incurred by them in their capacity in defending any proceedings whether civil or criminal, in which judgement is given in favour or in which they are acquitted or in connection with any application in which relief is granted to them by the court from liability for negligence, default, breach of duty or breach of trust in relation to the affairs of British Epilepsy Association. 

## **Objectives and activities** 

The charity’s objects are set out in detail in clause 3 of its Memorandum of Association. In summary, the Association exists for the benefit and service of people with epilepsy and others interested in epilepsy and associated conditions. The Association seeks to ensure that everything it undertakes is free of political and commercial bias. 

The Association’s strategic plan has two goals – to improve the quality and availability of healthcare services for people with epilepsy and to improve awareness and understanding of epilepsy. To achieve these two goals the charity focuses on eight objectives. In addition, the charity has set itself five organisation goals to help it to be stronger and more effective in the future. 

Despite the extraordinary conditions prevailing through much of 2021, the staff, volunteers and supporters of the charity remained focused on delivering the strategy. The key achievements and successes of 2021 are set out here. 

11 



## **Goal 1: Improve the quality and availability of health care services for people with epilepsy** 

## **1. Provide advice, information and training about epilepsy** 


**----- Start of picture text -----**<br>
2021<br>Helpline advice and information service users 10,536<br>First time Helpline users 3,271<br>Number of page views of the advice and information web pages  2,637,909<br>Visits to e-learning site  176,388<br>Registrations on e-learning courses  31,317<br>Completions of e-learning courses  21,583<br>Number of printed advice and information items ordered  81,059<br>Number of advice and information downloads  97,551<br>**----- End of picture text -----**<br>


- We maintained all of our advice and information resources through the year, providing people with high quality information they know they can trust. 

- In November Epilepsy Action was awarded the Patient Information Forum PIF Tick award to accredit the quality of its patient advice and information. The PIF Tick is the only UK quality mark for trustworthy health information. 

- In 2020 we launched a Covid-19 and epilepsy advice and information web page. This continued through 2021 being reviewed and updated every day. 

- The top five enquiries to the Helpline service in 2021 were - Driving; Listening Ear; Coronavirus; Seizure types and Getting the right treatment. 

- A survey of Helpline service users during the year reported that 92% felt listened to and respected; 91% were satisfied with the advice and information they received and 90% said they found it easy to get an answer to their questions. 

- There were 176,388 visits to our e-learning website with 31,317 course registrations and 21,583 course completions. 

## **2. Give people the skills and opportunities to speak out for themselves and for others affected by** 

## **epilepsy** 

- We put people with epilepsy and their families at the centre of our public awareness campaigns including encouraging and supporting them to talk with confidence about their experiences of epilepsy through the media. 

- In advance of Purple Day in March, we polled 1,000 people with epilepsy to ask them, what is the one thing they would like people to know about epilepsy. The most frequently given answer was that the impact of epilepsy is more than just seizures. 

**3. Influence national health policy** 

- Representing the authentic voice of people affected by epilepsy, we were able to have an impact across a range of topics and issues including: the DHSC Covid-19 vaccination campaign, the availability of medicinal cannabis, the consistency of supply of epilepsy medicines and protecting epilepsy health services during the Covid-19 emergency. 

- At the end of 2021 we submitted a detailed written response to the consultation informing the review of the NICE guidelines on the epilepsies. 

- We continued to be an active member of the Neurological Alliance and of National Voices ensuring that the voice of people with epilepsy was heard and listened to. 

- To mark the first anniversary of the publication of the Cumberlege Report, there was a two and a half hour debate in the House of Commons on 8 July requiring the Health Minister responsible to answer questions and account for the government’s tardiness in implementing the Report’s recommendations. Cat Smith, Labour MP for Lancaster and Fleetwood and Chair of the All Party Group on valproate and other anti-epileptic drugs in pregnancy, spoke at length during the debate. She concluded her remarks with the following: 

   - _“I also put on record my thanks to Daniel Jennings from Epilepsy Action for his support in keeping me abreast of this and other issues that people with epilepsy face.”_ 

**4. Influence and support local health service design, commissioning and delivery** 

- We continued to champion epilepsy specialist nurses and advocate on their behalf as a critical component of any epilepsy service. We also provided virtually our popular nurse induction training courses. 

12 



- We continued to emphasise the importance of maintaining epilepsy services at local level at a time when NHS resources are overstretched. 

- We campaigned in Northern Ireland to address the unacceptably long waiting times for neurology services. 

## **5. Research** 

- We invested a total of £132,095 in our research activities in 2021. 

- We were involved in five research partnerships covering clinically effective treatments, preconception counselling for women, subcutaneous EEG, a service design model for alternative care in emergency departments and Remote Assessment of Disease and Relapse in Central Nervous System Disorders (RADAR-CNS). 

- We supported five other research organisations in their applications for funding. 

- Eight papers from research projects we have supported were published during 2021 in peer reviewed journals. 

- With our partners, Elsevier, we continued to publish _Seizure_ , the European Journal of Epilepsy. This provides a forum for papers on all topics related to epilepsy and seizure disorders. 

## **Goal 2: Improve awareness and understanding of epilepsy** 

**1. Encourage and support people to be open about epilepsy** 

- We talked about epilepsy with confidence and we encouraged others to do the same. Thousands of stories were shared on social media. 

- We worked with our media volunteers to get their stories into the public domain resulting in 54 articles. 

- We continued to support our online forums for people with epilepsy providing people with a safe space to express themselves. 

## **2. Publicly celebrate positive attitudes towards epilepsy and challenge negative attitudes** 

- Our Helping Hands Awards recognised people and organisations who had assisted people with epilepsy in some way. The Awards received a total of 150 nominations from which 10 recipients were recognised. 

- In National Epilepsy Week in May we worked with the model Ariish Wol. Ariish has a remarkable backstory including her life living with epilepsy. During the Week we focused on different issues each day including the experience of Covid-19 and epilepsy, our employer’s toolkit, the NHSE video on epilepsy and our Walk50k event. 

- In March our Purple Day activities included a podcast with comedian Maisie Adam, an explainer video on YouTube - ‘What is epilepsy?’, the launch of our new employer toolkit and sharing peoples’ stories about misconceptions around epilepsy. 

## **3. Engage with national and local decision makers** 

- We supported the Westminster All Party Parliamentary Group on epilepsy by providing its secretariat - in conjunction with SUDEP Action. 

- We remained in close contact with the NHS and the Department of Health and Social Care throughout 2021, keeping up to date with plans and information about managing the Covid-19 pandemic and ensuring people with epilepsy were not overlooked and were kept informed. This included promoting the UK-wide vaccination and booster campaigns. 

- Our #MakeWelfareFair campaign reported on a survey of people with epilepsy that highlighted the problems they face with the assessment process for Personal Independence Payments (PIP). 

- We provided written and oral evidence to the Department for Work and Pensions select committee inquiry into the disability employment gap. 

## **Organisation goals** 

**1. Building a community of interest around epilepsy** 

- At the end of 2021 we had 8,637 members. However, our reach and engagement goes much further than this with tens of thousands of supporters. 

- Epilepsy Action is present in local communities throughout the UK through our groups and branches. Even though these were unable to meet in person, they still provided an invaluable virtual service connecting people together. 

13 



- Tens of thousands of people subscribed to our social media accounts across six different platforms, sharing our positive messages about epilepsy with many thousands more. 

- Volunteers came forward throughout the year to support our work in research, campaigning, public awareness and fundraising. 

**2. Developing our income** 

- Total income in 2021 increased by £919,865 (38.4%) compared to 2020. 

- A variety of virtual fundraising activities were tested during the year and this helped fundraising income to reach £763,229. This compares to £229,853 in 2020. 

- Income from corporate donations, legacies, grants and from donated goods and services all increased in 2021 compared to 2020. 

**3. Raising the profile and visibility of Epilepsy Action** 

- Throughout the year Epilepsy Action was once again the ‘go to’ organisation for the press on any stories relating to epilepsy. 

- We achieved 2,078 media mentions for the charity including 718 articles that featured a spokesperson from the charity. 

- We saw an increase of 600% in the online coverage of the charity and a 58% increase in coverage by national media. 

- We edited, produced and distributed four issues of _Epilepsy Today_ and four issues of _EP: Epilepsy Professional_ . 

**4. Becoming a digital charity** 

- Our main website received a total of 4,965,670 page views from 1,712,285 visitors. The advice and information section pages were viewed 2,637,909 times. 

- We were active across six different social media platforms increasing our presence and influence in all of them. 

- We began a major overhaul of the design and content of our website. This will conclude in 2022. 

- We restarted our project to implement a new CRM database. This is scheduled to conclude in 2022. 

**5. Delivering our strategy in local communities** 

- In 2021 we organised 126 nationwide virtual group meetings with 805 attendees. 71 of our local groups held 289 local virtual group meetings with 1,982 attendees. We briefly reintroduced face-to-face meetings in the Autumn and held 26 of these with 70 attendees before we had to suspend them again in December due to the emergence of the new Covid variant. 

- A survey of users of virtual groups reported that: 

   - 98% of people felt that attending our local virtual groups helped them stay connected with others living with epilepsy. 

   - 96% would recommend our local virtual groups to others. 

   - 93% felt that attending a group has helped them gain practical information and support about living with epilepsy. 

   - 88% said groups helped them feel better about living with epilepsy. 

   - 81% would like to attend both face to face and virtual meetings in the future. 

- We ran 77 epilepsy awareness sessions delivered virtually to 1,085 people. 

- In December, following consultation with volunteers and service users during the year, we chose to rebrand our ‘Coffee and Chat’ Groups under the new title of ‘Talk and Support’. 

## **Values and beliefs** 

Epilepsy Action is defined by its **values** . They guide what we do, how we work and the decisions we make. 

We are **positive** about epilepsy and **passionate** about what we do. We are **creative and innovative** in our thinking and **confident** in our actions. 

We **care** about people with epilepsy and their families. We listen to them and we respond to their needs. We never forget that epilepsy is about people. 

We are a **diverse** and **inclusive** organisation that actively reaches out to people across all countries of the United Kingdom and British Isles. We welcome everyone affected by epilepsy. 

**We represent** by being a community of interest around epilepsy - reflecting peoples’ hopes and aspirations and providing identity, unity and a voice. 

Further details about the Association’s work and how it delivers public benefit appear elsewhere in this report under ‘Achievements and performance’. Extracts from this report also appear on our website, www.epilepsy.org.uk. 

14 



## **People** 

The Council of Management would like to place on record its appreciation of the hard work and commitment to the charity’s objectives of all staff in 2021. At no time during the pandemic has the Association furloughed any of its employees. Everyone has continued working, often in very difficult circumstances, to keep our services open and available. During the year the Association’s operational structure was reviewed and revised to create five departments – Communications and Digital Engagement, Corporate Services, Fundraising, Health Improvement and Influencing and Services. 

The senior staff employed by the Association were: 

**Chief Executive** Philip Lee **Deputy Chief Executive** Rebekah Smith – _from 19 April 2021_ **Director of Services** Ann Richardson-Greaves - _from 18 October 2021_ **Director of Health Improvement and Influencing** Alison Fuller – _from 14 February 2022_ **Director of Fundraising** Philippa Cartwright **Director of Communications and Digital** Jon Eaton - _from 18 October 2021_ **Engagement Director of Corporate Services** Tony Spinks - _from 18 October 2021_ Chief Financial Officer Tony Spinks - _to 18 October 2021_ Director of Digital Services Jon Eaton - _to 18 October 2021_ Director of Local Services Ann Richardson-Greaves – _From 12 April 2021 to 18 October 2021_ Director of Local Services Clare Watson - _to 19 February 2021_ Director of Epilepsy Services Angie Pullen _to 31 July 2021_ Director of External Affairs Louise Cousins - _to 30 September 2021_ Director of Support Services Barry Wilson _to 18 October 2021_ 

## **Key management personnel** 

The key management personnel comprise the Trustees, the Chief Executive and the Deputy Chief Executive, see note 20. 

## **Pay policy for senior staff** 

The pay of all staff including senior staff is reviewed annually. The benchmark for any increase is the August index of average earnings (UK whole economy). However, the trustees also take into account what the charity can afford, the local and voluntary sector labour markets and general economic conditions. There was no increase in staff salaries during 2021. 

The Council also acknowledges with gratitude the work and commitment of the many volunteers who willingly give of their time to the considerable benefit of the charity and the people the charity serves. The opportunities for volunteering in 2021 were severely curtailed but even so, the total number of hours donated to the Association in 2021 by all of its volunteers is estimated to be 42,319 (2020: 20,734). This equates to 23.6 full time staff, based on an average staff working week of 34.5 hours. Using the Association’s mean average staff cost in 2021 of £18.46 per hour, (which includes the cost of national insurance and pension contributions), the financial value of this volunteered time in 2021 is estimated to be £781,209 (2020: £402,675). These financial values are not recognised within the statement of financial activities as they do not meet the income recognition criteria under the SORP. 

## **Equal Opportunities** 

The Association supports the principle of equal opportunities, in particular for those who are unable to compete equally in open employment. This especially includes people who have a history of epilepsy. All staff may become subscribing members of the Association and are kept informed of the charity’s activities and progress through regular meetings and written communications. 

15 



The Council of Management would also like to acknowledge the help and support of the following people who served the Association during 2021. 

|**Patron**|The Duchess of Kent|
|---|---|
|**Vice Patrons**|His Eminence The Cardinal Archbishop of Westminster|
||The Very Reverend The Chief Rabbi|
||The Free Churches’ Moderator|
|**President**|Baroness Ford of Cunninghame|
|**Honorary Past President**|Baroness Gould of Potternewton|
|**Honorary Vice Presidents**||
|Ms Karen Armstrong|Mr Darren Millar AM –_retired 29 June 2021_|
|Professor Gus Baker|Ms Laura Sandys–_retired 29 June 2021_|
|Mr William Fiennes|Ms Paula Sherriff–_retired 29 June 2021_|
|Dr Evan Harris|Mr Stephen Twigg–_retired 29 June 2021_|
|Lord Smith of Leigh_– died 3 August 2021_|Professor Ray Tallis|
|Mr Paul Maynard MP||



## **Achievements and performance** 

Despite the difficulties of the year, we have made good progress in all of our strategic priority areas. We have sustained and developed our services, ensuring the charity remains available to those who need it. The positive influence that our work has on peoples’ lives is more fully documented on our website www.epilepsy.org.uk. 

## **Financial Review** 

The results for the year are set out on pages 26 to 45. The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102), (effective 1 January 2015), with the aim of presenting the financial position of the Association in a clear, comprehensive and intelligible way. The results of the Association’s commercial subsidiary, BEA Trading Limited, are shown in note 13 to the accounts. 

## **General review of the charity’s financial position** 


**----- Start of picture text -----**<br>
2021 2020<br>£ £<br>Total incoming resources 3,314,918 2,395,053<br>Total resources used 3,299,536 3,126,323<br>Surplus / (Deficit) 15,382 (731,270)<br>Unrealised Gain / (Loss) 212,184 (185,793)<br>Net Movement in Funds 227,566 (917,063)<br>Total Funds 3,672,153 3,444,587<br>**----- End of picture text -----**<br>


Total income for 2021 was £3,314,918 (2020: £2,395,053). Total resources used amounted to £3,299,536 (2020: £3,126,323). Across all Funds there was a surplus of income over expenditure of £15,382 (2020: deficit of £731,270). After accounting for an unrealised gain of £212,184 on the value of investments (2020: unrealised loss of £185,793) the net movement in funds for the year was an increase of £227,566 (2020: decrease of £917,063). The total funds held by the charity at the end of the year is £3,672,153 (2020: £3,444,587). 

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## **Principal sources of funding** 


Income from donations and legacies amounted to £2,988,108 (2020: £2,050,228). Income from other trading activities amounted to £63,566 (2020: £112,358). Income from investments was £83,815 (2020: £108,709). Income from charitable activities was £179,429 (2020: £123,758). The amount spent on raising funds in 2021 was £871,862 (2020: £839,285). This equates to an income of £3.80 for every £1.00 spent on raising funds (2020: £2.85 income for every £1.00 spent). 


The top six performing income areas are responsible for 91% of the charity’s income. Legacy bequests are the top income generator responsible for 32% of the Associations income. In 2021 this amounted to £1,061,959 (2020: £735,023). Donations from individuals contributed £606,472 (2020: £621,484). Membership subscriptions contributed £221,944 (2020: £224,713). Income from fundraising events sponsorship contributed £763,229 (2020: £229,853). Grant income contributed £211,389 (2020: £128,720). Income from sales of goods and services was £179,429 (2020: £123,758). 

We would like to thank all the charitable trusts and foundations, companies and community groups who have generously provided grant and donation income or gifts in kind to support our work. We would also like to thank all the many individuals who supported us throughout 2021 through their membership, donations, sponsorship, or event participation. 

Fundraising income is explained in more detail in notes 2 and 4 to the accounts. 

## **Grant making policy** 

The Association makes grants available for research. Applications are considered in light of the Association’s prevailing research priorities and with reference to the Association’s research policy focus on non-laboratory research. 

## **Investment policy** 

The Association’s current investment policy was approved and adopted by the Council of Management on 11 July 2017. The policy requires a balanced investment portfolio that can deliver both capital growth and income. The precise balance within the portfolio between capital growth investments and investments for income may vary in line with the changing needs of the Association and fluctuations in market conditions. 

The investment priority is first to achieve a level of income that is broadly comparable with what is generally available. This income is to be used to provide some contribution to the overall funding of the Association’s charitable objectives. 

The policy is also designed to enable the Association to build and maintain sufficient capital reserves to provide cover for the inevitable fluctuations in revenue income, thus ensuring continuity in the provision of the Association’s services in the context of its current strategic plan and business and charitable objectives. An appropriate level of reserves for the Association is described by the reserves policy. 

17 



The Council of Management will not knowingly invest in specific companies whose activities are, in the opinion of the Council of Management, inconsistent with the aims and objectives of the Association. The Council reviews the policy every year and carries out a more thorough examination every three years. The policy was last reviewed by Council on 13 April 2021. 

## **Performance of investments** 

At the end of 2021, the Association retained listed investments valued at £2,557,317 (2020: £2,345,133). These investments are detailed in note 12 to the financial statements. The listed investments produced an income of £83,815 (2020: £105,715). There was an unrealised gain on the investments of £212,184 (2020: unrealised loss of £185,793). No interest was received on cash deposits in 2021 (2020: £2,994). BEA Trading Limited contributed income to the charity of £34,812 (2020: £38,825). Total income for the year from the Association’s investments was £83,815 (2020: £108,709). Investment management costs in 2021 were £13,166 (2020: £13,553). 

The performance of the Association’s investment manager is measured against set targets and objectives. The investment manager provides a regular written performance report on the investments and each trustee has online access to independently view the Association’s investment portfolio at any time. The investment manager is also required to make a face-to-face presentation to the Council at least once every year. 

## **Fixed assets** 

Details of movements in fixed assets during the year are set out in notes 10, 11 and 12 to the financial statements. 

## **CRM** 

At the start of 2021 the Association reviewed the CRM project and the work to date which had a total cost of £127,160. The Association employed an external consultancy firm, Hart Square, to perform a review of the project and the likelihood of completion. The review concluded that the original project was unlikely to be delivered on time or provide the intended benefits. It recommended that the project should be reconstituted and restarted. Following this recommendation, the Association completely revised the project and appointed a new CRM database supplier, Bluelight CRM Ltd., in November 2021. 

The work completed to the end of 2021 amounted to £127,160 which was capitalised. The decision was taken to write the total amount of £127,160 off in 2021. The Charity has designated a further £285,991 to bring the total budget for completion of the CRM project to £400,000. 

Lessons have been learned from this experience and acted upon. The project governance has been reviewed and a new project team has been put in place with clear reporting guidelines and levels of authority. The original project goals have been reviewed and updated. A Minimum Viable Product (MVP) has been clearly defined with strong project governance to ensure the project remains within its specified boundaries. The importance of this project has been communicated to staff and workloads have been reviewed to ensure all staff are able to participate and give the project the time it needs to be successfully completed. 

## **Reserves policy** 

The current reserves policy was approved and adopted by the Council of Management on 11 July 2017. It was amended by the Council on 4 August 2020 to enable access to more of the charity’s unrestricted reserves. This temporary measure is in place until the end of 2023. It was adopted to help support the charity during turbulent financial times. The policy applies a risk based approach to the reserves based on an assessment of potential risk to future income. The policy is that the Association shall maintain a level of unrestricted financial reserves that falls within a range of between four months (previously eight months) and twelve months gross total unrestricted income based on the following year’s revenue budget forecast. If the level of unrestricted financial reserves moves outside of these parameters then the Council of Management will take appropriate action. 

Based on the 2022 total unrestricted income of £3,525,176 forecast in the 2022 revenue budget, the range of unrestricted reserves should be between £3,525,176 (12 months cover) and £1,175,059 (4 months cover). At the end of 2021, the unrestricted reserve funds amounted to £2,543,498 (2020: £2,423,069). At this level they represent 8.66 months worth of unrestricted income and are therefore within the boundaries set by the reserves policy. 

18 



Within the unrestricted reserves, the Association held designated funds totalling £468,206 (2020: £310,320). Of this total, £400,000 is designated for updating the Association’s CRM database. £33,206 represents funds received from the Estate of the late Roger Victor Crawley which he wished to be used for research. £35,000 represents funds received from the Estate of the late George Cowell which he wished to be used for our work in the Liverpool area. Also, in addition, at the end of the year, the Association held restricted reserves amounting to £660,449 (2020: £711,198). All of the Association’s reserve funds are explained in more detail in note 17 to the accounts. 

## **Plans for future periods** 

The Council of Management approves and adopts an annual operational business plan and an annual revenue budget which includes a three year financial forecast. 

On 4 October 2016 the Council approved and adopted a five year strategic plan for the Association to start on 1 January 2017. During 2020 the Council reviewed and adapted this plan in light of the conditions created by the Coronavirus pandemic and they extended it to run until the end of 2023. 

We want all people affected by epilepsy to receive the healthcare and support they need and the public respect, fairness and understanding they deserve. To make this vision a reality it is the charity’s mission to strive to improve the lives of everyone affected by epilepsy. 

- To make this happen we are focused on two goals. 

   1. To improve the quality and availability of health care services for people with epilepsy. 

   2. To improve awareness and understanding of epilepsy. 

- To achieve these two goals our work is focused on: - 

- Providing advice, information and training 

- Giving people the skills and opportunities to speak out for themselves and for others affected by epilepsy 

- Influencing national health policy 

- Influencing and supporting local health service design, commissioning and delivery 

- Research 

- Encouraging and supporting people to be open about epilepsy 

- Publicly celebrating positive attitudes towards epilepsy and challenging negative attitudes 

- Engaging with national and local decision makers 

- We also want to develop as an organisation. We have set ourselves five objectives to do this: - 

- To build and activate a strong community of interest of people affected by epilepsy. 

- To develop a sustainable annual income of at least £3.5 million a year by the end of 2023. 

- To raise the public profile and visibility of Epilepsy Action and be recognised as the leading epilepsy organisation in the UK. 

- To be a digital charity, ensuring that Information and Communication Technology (ICT) is integrated and coordinated throughout the organisation. 

- To deliver our strategy in local communities and co-ordinate this work with our national activity and organisational goals. 

We know that our plans are ambitious and challenging. We know they will not happen easily or quickly and will not be entirely completed within the timeframe of this strategy. But we also believe that what we want is ultimately achievable and it’s what people affected by epilepsy need. We’ll know when our vision is becoming a reality when we see evidence of the following: - 

- More people getting access to specialist healthcare and treatment for their condition. 

- People with epilepsy informed about their condition and their views influencing their care and treatment. 

- Fewer epilepsy related deaths. 

- Rates of epilepsy misdiagnosis going down. 

- More people achieving seizure control. 

- Fewer people having harmful side effects from anti-epileptic drugs. 

- People with epilepsy being open about their condition. 

19 



- People with epilepsy achieving their maximum potential in life. 

- Positive changes in public attitudes towards epilepsy. 

- Greater social inclusion of people with epilepsy. 

- Changes in public policy and the law to treat people with epilepsy fairly. 

- Positive changes in the employment of people with epilepsy. 

## **Statement of Council Members’ Responsibilities** 

The Council Members (who are also directors of British Epilepsy Association for the purposes of company law) are responsible for preparing the Trustees annual report (which includes the directors report) and the Strategic Report and the financial statements in accordance with applicable law and regulations. 

Company law requires the council to prepare financial statements for each financial year. Under that law the directors have elected to prepare the financial statements in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). 

Under company law the council must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charity and of the profit or loss of the charity for that period. 

In preparing those financial statements, the directors are required to: 

- a. select suitable accounting policies and then apply them consistently; 

- b. make judgements and accounting estimates that are reasonable and prudent; 

- c. prepare the financial statements on the going concern basis unless it is inappropriate to presume that the company will continue in business. 

The council members are responsible for keeping adequate accounting records that are sufficient to show and explain the company’s transactions and disclose with reasonable accuracy at any time the financial position of the 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 company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. 

## **Auditor** 

In accordance with the existing articles of association, a resolution proposing that RSM UK Audit LLP be reappointed as auditor of the company was put to a general meeting of members on 16 June 2021. 

## **Statement of disclosure to auditor** 

So far as each person who was a trustee at the date of approving this report is aware, there is no relevant audit information of which the company’s auditor is unaware. Additionally, each trustee has taken all the necessary steps to make themselves aware of all relevant audit information and to establish that the company’s auditor is aware of that information. 

The trustees’ report is prepared under the Charities Act 2011 which also contains all information required in a Directors Report by the Companies Act 2006 and the incorporated Strategic Report prepared under the Companies Act 2006, were approved by the board of trustees. 

20 



**Registered office and professional advisers** 

|**Registered Office**|New Anstey House||
|---|---|---|
||Gate Way Drive||
||Yeadon||
||Leeds||
||LS19 7XY||
|**Registered Auditors**|RSM UK Audit LLP||
||Central Square||
||5thFloor||
||29 Wellington Street||
||Leeds||
||LS1 4DL||
|**Solicitors**|Wrigleys Solicitors LLP||
||19 Cookridge Street||
||Leeds||
||LS2 3AG||
|**Bankers**|Yorkshire Bank plc|National Westminster Bank|
||94-96 Briggate|City Office Leeds|
||Leeds|8 Park Row|
||LS1 6NP|LS1 5HD|
|**Investment Managers**|Brewin Dolphin Securities|Limited|
||10 Wellington Place||
||Leeds||
||LS1 4AN||



The members of the Council of Management in their capacity as directors hereby approve the Trustees’ Annual Report and the incorporated strategic report. 


**Philip Lee Chief Executive and Company Secretary 12 April 2022** 

21 



## **INDEPENDENT AUDITOR’S REPORT TO THE MEMBERS OF BRITISH EPILEPSY ASSOCIATION** 

## **Opinion** 

We have audited the financial statements of British Epilepsy Association (the ‘charitable company’) for the year ended 31 December 2021 which comprise the Statement of Financial Activities, the Balance Sheet, and the Cash Flow Statement and notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including FRS 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 charitable company’s affairs as at 31st December 2021 and of its incoming resources and application of resources, including 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 company 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 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 other information comprises the information included in the Trustees’ annual report other than the financial statements and our auditor’s report thereon. The trustees are responsible for the other information contained within the Trustees’ annual report. 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 course of 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. 

22 



## **Opinions on other matters prescribed by the Companies Act 2006** 

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

- the information given in the Strategic report and the Trustees’ Report, which includes the Directors’ 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 Trustees’ Report, which includes the Directors’ Report has been prepared in accordance with applicable legal requirements. 

## **Matters on which we are required to report by exception** 

In the light of the knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Strategic report and the Trustees’ Report, which includes the Directors’ Report. 

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

- adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us; 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 Council Members’ responsibilities set out on page 20, 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 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. 

## **The extent to which the audit was considered capable of detecting irregularities, including fraud** 

Irregularities are instances of non-compliance with laws and regulations.  The objectives of our audit are to obtain sufficient appropriate audit evidence regarding compliance with laws and regulations that have a direct effect on the determination of material amounts and disclosures in the financial statements, to perform audit procedures to help identify instances of non-compliance with other laws and regulations that may have a material effect on the financial statements, and to respond appropriately to identified or suspected non-compliance with laws and regulations identified during the audit. 

In relation to fraud, the objectives of our audit are to identify and assess the risk of material misstatement of the financial statements due to fraud, to obtain sufficient appropriate audit evidence regarding the assessed risks of material 

23 



misstatement due to fraud through designing and implementing appropriate responses and to respond appropriately to fraud or suspected fraud identified during the audit. 

However, it is the primary responsibility of management, with the oversight of those charged with governance, to ensure that the entity's operations are conducted in accordance with the provisions of laws and regulations and for the prevention and detection of fraud. 

In identifying and assessing risks of material misstatement in respect of irregularities, including fraud, the audit engagement team: 

- obtained an understanding of the nature of the sector, including the legal and regulatory frameworks that the charitable company operates in and how the charitable company is complying with the legal and regulatory frameworks; 

- inquired of management, and those charged with governance, about their own identification and assessment of the risks of irregularities, including any known actual, suspected or alleged instances of fraud; 

- discussed matters about non-compliance with laws and regulations and how fraud might occur including assessment of how and where the financial statements may be susceptible to fraud. 

As a result of these procedures we consider the most significant laws and regulations that have a direct impact on the financial statements are FRS 102, Charities SORP (FRS 102), Companies Act 2006, Charities Act 2011, the charitable company’s governing document, tax legislation and Charities Commission. We performed audit procedures to detect non-compliances which may have a material impact on the financial statements which included reviewing the financial statements including the Trustees’ Report and Strategic Report, remaining alert to new or unusual transactions which may not be in accordance with the governing documents, inspecting correspondence with tax authorities and evaluating advice received from external advisors. 

We performed audit procedures to inquire of management and those charged with governance whether the charitable company is in compliance with these law and regulations and inspected correspondence with regulatory authorities. 

The audit engagement team identified the risk of management override of controls and income recognition as the areas where the financial statements were most susceptible to material misstatement due to fraud.  Audit procedures performed included but were not limited to testing manual journal entries and other adjustments, evaluating the business rationale in relation to significant, unusual transactions and transactions entered into outside the normal course of business, challenging judgments and estimates and agreeing income to third party documentation. 

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

24 



## **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. 


LUCY ROBSON (Senior Statutory Auditor) 

For and on behalf of RSM UK AUDIT LLP, Statutory Auditor 

Chartered Accountants 

Central Square 

5[th] Floor 29 Wellington Street 

Leeds LS1 4DL Date 19/04/22 

25 



## **British Epilepsy Association Statement of Financial Activities** 

Incorporating an Income and Expenditure Account for the year ended 31[st] December 2021 

|**Note**<br>**Incoming resources:**<br>2<br>Donations and legacies<br>Charitable activities<br>Other trading activities<br>Investment income<br>**Total**<br>**Resources expended:**<br>6<br>Raising funds<br>Charitable activities<br>Other trading activities<br>Investment management costs<br>Extraordinary items - CRM impairment<br>**Total**<br>**Net incoming/(outgoing)**<br>**resources before investment**<br>**gains/(losses)**<br>**Recognised gains**<br>Net unrealised gains/(losses) on<br>investments<br>**Net incoming/(outgoing)**<br>**resources**<br>Transfers between funds<br>**Net movement in funds**<br>**Reconciliation of funds**<br>Total funds brought forward<br>**Total funds carried forwards**|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**Total**<br>**Funds**<br>**2021**<br>**2021**<br>**2021**<br>**2021**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**<br>2,801,391<br>10,000<br>176,717<br>2,988,108<br>2,050,228<br>176,585<br>-<br>2,844<br>179,429<br>123,758<br>63,566<br>-<br>-<br>63,566<br>112,358<br>77,142<br>-<br>6,673<br>83,815<br>108,709|
|---|---|
||3,118,684<br>10,000<br>186,234<br>3,314,918<br>2,395,053|
||871,862<br>-<br>-<br>871,862<br>839,285<br>1,739,923<br>10,945<br>254,429<br>2,005,297<br>2,101,915<br>282,051<br>-<br>-<br>282,051<br>171,570<br>12,883<br>-<br>283<br>13,166<br>13,553<br>127,160<br>-<br>127,160<br>-|
||2,906,719<br>138,105<br>254,712<br>3,299,536<br>3,126,323|
|||
||211,965<br>(128,105)<br>(68,478)<br>15,382<br>(731,270)|
||194,455<br>-<br>17,729<br>212,184<br>(185,793)|
||406,420<br>(128,105)<br>(50,749)<br>227,566<br>(917,063)|
||(285,991)<br>285,991<br>-<br>-<br>-|
||120,429<br>157,886<br>(50,749)<br>227,566<br>(917,063)|
||2,423,069<br>310,320<br>711,198<br>3,444,587<br>4,361,650|
|||
||2,543,498<br>468,206<br>660,449<br>3,672,153<br>3,444,587|



The surplus for the year arises from the Charity’s continuing operations. 

26 



## **British Epilepsy Association** 

(Company Number 00797997) **Balance Sheet** 

as at 31 December 2021 

|**Note**<br>**Fixed Assets**<br>Tangible fixed assets<br>10<br>Intangible fixed assets<br>11<br>Investments<br>12<br>**Current Assets**<br>Debtors<br>14<br>Cash at bank and in hand<br>**Creditors -** amounts falling due within one year<br>15<br>**Net Current Assets**<br>**Net Assets**<br>16<br>**Funds**<br>Unrestricted<br>General funds<br>17<br>Designated funds<br>17<br>Restricted funds<br>17|**£**<br>**£**<br>**£**<br>**£**<br>45,066<br>42,749<br>62,255<br>122,687<br>2,557,327<br>2,345,143<br>2,664,648<br>2,510,579<br>246,295<br>318,321<br>952,406<br>821,537<br>1,198,701<br>1,139,858<br>(191,196)<br>(205,850)<br>1,007,505<br>934,008<br>3,672,153<br>3,444,587<br>2,543,498<br>2,423,069<br>468,206<br>310,320<br>660,449<br>711,198<br>3,672,153<br>3,444,587<br>**2021**<br>**2020**|**£**<br>**£**<br>**£**<br>**£**<br>45,066<br>42,749<br>62,255<br>122,687<br>2,557,327<br>2,345,143<br>2,664,648<br>2,510,579<br>246,295<br>318,321<br>952,406<br>821,537<br>1,198,701<br>1,139,858<br>(191,196)<br>(205,850)<br>1,007,505<br>934,008<br>3,672,153<br>3,444,587<br>2,543,498<br>2,423,069<br>468,206<br>310,320<br>660,449<br>711,198<br>3,672,153<br>3,444,587<br>**2021**<br>**2020**|
|---|---|---|
|||3,444,587|
|||2,423,069<br>310,320<br>711,198|
|||3,444,587|



The financial statements were approved and authorised for issue by the Council of Management on 12 April 2022 and signed on its behalf by: 






**Richard Chapman** Chair 

**June Massey** Honorary Treasurer 

The notes on pages 26-45 form part of these financial statements. 

27 



## **British Epilepsy Association Statement of Cash Flows** 

For the year ended 31[st] December 2021 

|**Note**<br>Net cash (used) in/provided by operating activities<br>A<br>**Cash flow from investing activities**<br>Purchase tangible fixed assets<br>10<br>Purchase intangible fixed assets<br>11<br>Investment income<br>2<br>Sale current asset investments<br>Net cash provided by/(used in) investing activities<br>Increase in cash and cash equivalents in the year<br>Cash and cash equivalents at the beginning of the year<br>**Cash and cash equivalents at the end of theyear**|**2021**<br>**2020**<br>**£**<br>**£**<br>142,433<br>(908,441)<br>(28,651)<br>(28,017)<br>(66,728)<br>(8,553)<br>83,815<br>108,709<br>-<br>500,000|
|---|---|
||(11,564)<br>572,139<br>130,869<br>(336,302)<br>821,537<br>1,157,839|
||952,406<br>821,537|



## **Note A.  Reconciliation of net movement in funds to cash generated from operations** 

|**Note**<br>**Net cash flow (used in)/provided by operating activities**<br>Net movement in funds as per the Statement of Financial Activities<br>Depreciation charge for the year<br>10<br>Impairment loss<br>11<br>Investment income<br>2<br>Unrealised (gains)/losses on investment<br>12<br>Operating cash flows before movements in working capital<br>Decrease(increase) in debtors<br>(Decrease) in creditors<br>Net cash (used in)/provided by operating activities|**2021**<br>**2020**<br>**£**<br>**£**<br>227,566<br>(917,063)<br>26,334<br>6,497<br>127,160<br>-<br>(83,815)<br>(108,709)<br>(212,184)<br>185,793|
|---|---|
||85,061<br>(833,482)<br>72,026<br>(63,248)<br>(14,654)<br>(11,711)|
||57,372<br>(74,959)|
||142,433<br>(908,441)|



28 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **1. Accounting policies** 

## **1.1 Basis of preparation of financial statements** 

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) and the Companies Act 2006. 

British Epilepsy Association meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note. The financial statements are presented in sterling which is the functional currency of the charity. Monetary amounts are rounded to the nearest £1 except where otherwise indicated. 

By the nature of its principal activities, the association is a non profit making organisation and because of this a Profit and Loss Account is not included in these accounts, being replaced by a Statement of Financial Activities. 

The Statement of Financial Activities has been prepared on the basis that all operations are continuing operations. 

The financial statements show information about the charity as an individual entity and not about its group, as the charity has taken advantage of the exemption provided by section 405 of the Companies Act 2006 not to prepare consolidated financial statements as the trustees consider that all the charity’s subsidiaries should be excluded from consolidation on the basis that they are immaterial for the purpose of giving a true and fair view. 

## **1.2 Going concern** 

Due to the strong position of the balance sheet, the level of liquid resources and the operating surplus in the year, the trustees have identified no material uncertainties that may cast significant doubt over the ability of the company to continue as a going concern for the period of at least 12 months from the approval of these financial statements. The trustees outline on page 18 that they have reviewed the reserves position and surplus for the year. 

## **1.3 Leasing** 

Rentals payable under operating leases are charged against income on a straight line basis over the lease term. 

## **1.4 Incoming resources** 

All incoming resources are recognised once the charity has entitlement to the resources, it is probable that the resources will be received, and the monetary value of incoming resources can be measured with sufficient reliability. 

## **1.5 Expenditure** 

Resources used are dealt with on an accruals basis and are analysed between costs of generating funds and charitable expenditure as detailed on the Statement of Financial Activities on page 26. Where costs have not been directly attributed to a particular category, they have been allocated to activities on a basis consistent with the use of the resources. 

Support costs have been allocated to each charitable expenditure category on the basis of staff utilisation or on an activity basis of total direct expenditure. 

Governance costs include those incurred in the governance of the charity and its assets and are primarily associated with constitutional and statutory requirements. 

Termination benefits are recognised immediately as an expense when the Charity is demonstrably committed to terminate the employment of an employee or to provide termination benefits. 

## **1.6 Investments** 

Investments held as fixed assets are stated at fair value at the balance sheet date. Any difference between cost and market value is adjusted annually through the Statement of Financial Activities. The investment in the subsidiary undertaking is shown at cost. 

29 



## **1.7 Taxation** 

As a registered charity, British Epilepsy Association is not liable to taxation on its investment income and gains, income and gains arising from trading in furtherance of its charitable objectives and charitable donations. Recovery of income tax is made on tax credits arising from receipts under deeds of covenant and gift aid payments. VAT deemed to be irrecoverable is written off to the Statement of Financial Activities in the period to which it relates. 

## **1.8 Tangible fixed assets and depreciation** 

Annual impairment reviews are carried out to ensure the carrying value is not lower than the recoverable amount. 

The costs of minor additions or those costing below £5,000 are not capitalised. 

Tangible fixed assets are stated at cost less depreciation. Depreciation is provided at rates calculated to write off the cost of fixed assets, less their estimated residual value, over their expected useful lives on the following basis – 

 Leasehold improvements Straight line over the life of the lease  Fixtures, fittings and equipment Straight line over 5 years  Computers Straight line over 2 years 

Identifiable development expenditure is capitalised once the technical and financial feasibility can be demonstrated. Intangible fixed assets are stated at cost less amortisation. Amortisation is provided at rates calculated to write off the cost of fixed assets, once complete, less their estimated residual value, over their expected useful lives on the following basis – 

- CRM database Straight line over 5 years 

- Website Straight line over 3 years 

## **1.9 Donations and Legacies** 

Legacies are recognised when received or when we are aware that the executors have or probably have determined before the year-end that payment can be or will be made. This would normally follow agreement of estate accounts. 

Legacies that are received in the following year that meet the above conditions at year-end are accrued as income in the prior year accounts. In 2021 this amounted to £121,928 (2020: £112,629). 

Legacies that do not meet the conditions are not accrued at the year end. These are disclosed only as contingent assets and not included on the balance sheet or statement of financial activities. In 2021 this amounted to £247,000 (2020: £230,000). 

Donations are accounted for when received. Gift Aid receivable is included when there is a valid gift aid declaration and the donation has been received. 

## **1.10 Grants** 

Grants received are credited to ‘Incoming resources’ in the Statement of Financial Activities. Grants received are recognised at the later date of either when the decision to award the grant is notified to the charity or on agreement to the terms and conditions of the grant if required and when the criteria of entitlement and probability are met and the value can be measured reliably. 

Grants payable are payments made to the third parties in the furtherance of the charitable objects of the charity. Grants payable are recognised at the later date of either the decision to award the grant or on receipt of signed agreement to the terms and conditions of the grant if required. 

## **1.11 Pensions** 

The charity operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the company. The pension cost charge represents contributions payable by the charity and amounted to £189,368 (2020: £194,405). At year-end the pension creditor amounted to £nil (2020: £16,938). 

## **1.12 Branches** 

Income and expenditure in respect of the Association’s branch network has been included in the Statement of Financial Activities. Cash balances held by the branches at the year end are shown in Note 16 - Analysis of net assets between funds. 

## **1.13 Accounting for separate funds** 

The financial statements of a charity must differentiate between restricted and unrestricted funds. Restricted funds are 

30 



funds subject to specific conditions, imposed by the donor or by the specific terms of the charity appeal. 

Unrestricted funds are all the other funds of the Association and include designated funds which consist of amounts allocated for specific purposes by the charity itself. 

## **1.14 Recognition of liabilities** 

Liabilities are recognised when an obligation arises to transfer economic benefits as a result of past event. 

## **1.15 Cash equivalent policy** 

Cash or cash equivalent amounts are cash held in bank accounts by the main charity or branches and include all cash held on short term deposits. They exclude cash held within the investment portfolio as part of the on-going investment activities. 

## **1.16 Judgements and key sources of estimation uncertainty** 

In the application of the charity’s accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates. 

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised where the revision affects only that period, or in the period of the revision and future periods where the revision affects both current and future periods. 

Apart from the accrual of legacy income, Note 1.9, there are no other areas of estimation uncertainty 

## **1.17 Financial instruments** 

The company has elected to apply the provisions of Section 11 ‘Basic Financial Instruments’ and Section 12 ‘Other Financial Instruments Issues’ of FRS 102 to all of its financial instruments. 

Financial instruments are recognised when the company becomes party to the contractual provisions of the instrument. 

Financial assets and liabilities are offset, with the net amounts presented in the financial statements, when there is a legally enforceable right to set off the recognised amounts and there is an intention to settle on a net basis or to realise the asset and settle the liability simultaneously. 

## Financial Assets 

Trade and other debtors (including accrued income) which is receivable within one year and which do not constitute a financing transaction are initially measured at the transaction price and subsequently measured at amortised cost, being the transaction price less any amounts settled and any impairment losses. 

A provision for impairment of trade debtors is established when there is objective evidence that the amounts due will not be collected according to the original terms of the contract. Impairment losses are recognised in profit or loss for the excess of carrying value of the trade debtor over the present value of the future cash flows discounted using the original effective interest rate. Subsequent reversals of an impairment loss that objectively relate to an event occurring after the impairment loss was recognised, are recognised immediately in the profit or loss. 

## Financial Liabilities 

Trade and other creditors (including accruals) payable within one year that do not constitute a financing transaction are initially measured at the transaction price and subsequently measured at amortised cost, being transaction price less any amounts settled. 

Where the arrangement with a creditor constitutes a financing transaction, the creditor is initially measured at the present value of future payments discounted at a market rate of interest for a similar instrument and subsequently measured at amortised cost. 

## Derecognition of financial assets and liabilities 

A financial asset is derecognised only when the contractual rights to cash flows expire or are settled, or substantially all the risks and rewards of ownership are transferred to another party, or if some significant risks and rewards of ownership are retained but control of the asset has transferred to another party that is able to sell the asset in its entirety to an unrelated third party. 

A financial liability (or part thereof) is derecognised when the obligation specified in the contract is discharged, cancelled or expires. 

31 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **2. Details of Income** 


**----- Start of picture text -----**<br>
General  Designated  Restricted  Total  Total<br>Funds  Funds Funds  Funds  Funds<br>2021  2021 2021 2021 2020<br>£ £ £ £ £<br>Donations individual 589,335 - 17,137 606,472 621,484<br>Branch income 2,868 - 88 2,956 11,143<br>Legacies 982,131 10,000 69,828 1,061,959 735,023<br>Grants  124,730 - 86,659 211,389 128,720<br>Corporate donations 37,075 - 2,920 39,995 23,578<br>Membership subscriptions 221,944 - - 221,944 224,713<br>Fundraising 763,144 - 85 763,229 229,853<br>Donated goods and services 80,164 - - 80,164 75,714<br>2,801,391 10,000 176,717 2,988,108 2,050,228<br>General  Designated  Restricted  Total  Total<br>Funds  Funds Funds  Funds  Funds<br>2021  2021 2021 2021 2020<br>£ £ £ £ £<br>Sales of goods and services 176,585 - 2,844 179,429 123,758<br>General  Designated  Restricted  Total  Total<br>Funds  Funds Funds  Funds  Funds<br>2021  2021 2021 2021 2020<br>£ £ £ £ £<br>Event registration fees 3,555 - - 3,555 52,540<br>Lotteries 25,199 - - 25,199 20,993<br>BEA Trading Ltd 34,812 - - 34,812 38,825<br>63,566 - - 63,566 112,358<br>**----- End of picture text -----**<br>


|Income from quoted investments<br>Bank interest|**General**<br>**Funds**<br>**2021**<br>**Designated**<br>**Funds**<br>**2021**<br>**Restricted**<br>**Funds**<br>**2021**<br>**Total**<br>**Funds**<br>**2021**<br>**Total**<br>**Funds**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**<br>77,142<br>-<br>6,673<br>83,815<br>105,715<br>-<br>-<br>-<br>-<br>2,994|
|---|---|
||77,142<br>-<br>6,673<br>83,815<br>108,709|



## **Prior year income** 

All of the donations and legacies in 2020 were unrestricted with the exception of the following: Donations individual £48,544 Branch income £2,341, Legacies £77,630, Grants £96,426, Corporate donations £1,300, Membership subscriptions £11, Fundraising £1,550, Donated goods and services £0. 

All of the income from charitable activities in 2020 was unrestricted with the exception of £20. All of the income from other trading activities in 2020 was unrestricted. 

All of the income from investments in 2020 was unrestricted apart from £7,419. 

32 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **Legacies** 

Legacies with an estimated value to Epilepsy Action of £627,544 (2020: £601,495) have been notified to the charity but have not been included in the financial statements. The conditions for recognising this income within the accounts had not been met by 31 December 2021. Of these, legacies to the value of £247,000 have been disclosed only as contingent assets and therefore not accrued at year end (2020: £230,000). 

We would like to thank the following Grant funders: 

AM Fenton Trust Black Santa Fund (Belfast Cathedral) Charles Brotherton Trust Daisie Rich Trust Doris Field Charitable Trust Eveson Charitable Trust Ford Family Charitable Trust 1991 Fred Towler Charitable Trust Ganzoni Charitable Trust Margaret Giffen Charitable Trust Masonic Charitable Foundation St Paul's Column, Hinton Michael Cornish Charitable Trust National Lottery Pilkington Charities Fund Sir Donald and Lady Edna Wilson Charitable Trust Sir James Knott Trust Sir James Roll Charitable Trust Sir John Sumner's Trust Sovereign Health Care Tay Charitable Trust 

The Alison Hillman CT The Anne and John Walters Charitable Trust The Arthur and Audrey Silkin Trust Charitable Trust The Britford Bridge Trust Foundation The Broyst Foundation The Carrington Charitable Trust Trust The Cutlers Company Charitable Trust The Florence Turner Trust                                              Charitable Trust The Francis Charitable Trust The Fred Towler Charity Trust Charitable Trust The Fred Towler Charity Trust The George A Moore Foundation The Gledswood Charitable Trust Charitable Trust The Hamilton Wallace Trust The Henry Lumley Charitable Trust The Hugh Fraser Foundation The Hyde Foundation The J Reginald Corah Foundation Fund Greenhalgh CT The Jessie Spencer Trust 

The Lady Hind Trust The Linden Charitable Trust The Marjory Boddy Charitable Trust The Patricia Routledge Foundation The Paul Bassham Charitable Trust The Roselands Trust The Samuel Storey Family Charitable Trust The Simon and Philip Cohen Charitable Trust The Sir Robert Gooch Trust The Sylvia and Colin Shepherd Charitable Trust The Thoresby Charitable Trust The Vassilou Trust The W M Mann Foundation The Westcroft Trust The Wixamtree Trust Thomas and Rosemary Greenhalgh CT Wilmcote Charitable Trust 

## **3. Branches** 

|**3. Branches**|||
|---|---|---|
|**Branch cash included in current assets at 1**<br>**January 2021**<br>Branch income<br>Branch expenditure<br>Net income<br>Amount remitted by branches in the year<br>**Branch cash included in current**<br>**assets at 31 December 2021**|**2021**<br>**2020**<br>**£**<br>**£**<br>72,273<br>80,504<br>2,956<br>11,143<br> (857)<br> (11,550)<br>2,099<br>(407)<br>(600)<br>(7,824)<br>73,772<br>72,273||
||||
||||
|||72,273|



At the end of 2021 we had a total of 18 branches, 4 forums and 126 virtual groups (2020: 138 branches, forums and groups in total). 

In accordance with Charity law, monies raised by the Association's branches fall to be accounted for by the Association centrally under the direction of its Council of Management acting as charitable trustees. Monies raised by branches are held in trust for the Association. Each branch acts as custodian in a trustee capacity. 

33 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **4. Income from BEA Trading Ltd.** 

|Management charge<br>Gift Aid Donation|**General**<br>**Funds**<br>**2021**<br>**Designated**<br>**Funds**<br>**2021**<br>**Restricted**<br>**Funds**<br>**2021**<br>**Total**<br>**Funds**<br>**2021**<br>**Total**<br>**Funds**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**<br>12,000<br>-<br>-<br>12,000<br>12,000<br>22,812<br>-<br>-<br>22,812<br>26,825|
|---|---|
||34,812<br>-<br>-<br>34,812<br>38,825|



The management charge is in respect of administrative costs recharged to BEA Trading Limited. 

## **5. Analysis of Governance and Support Costs** 

The charity initially identified the costs of its support functions. It then identified those costs that relate to governance. Having identified its governance costs, the remaining support costs and the governance costs are apportioned between the key charitable activities undertaken (see Note 6) in the year. 

Refer to the table below for the basis of apportionment and the analysis of support and governance costs. 


**----- Start of picture text -----**<br>
General<br>Governance Total Basis of apportionment<br>support<br>Audit<br>- 22,000 22,000 Governance 100%<br>**----- End of picture text -----**<br>


|**Accountancy**<br>**Trustee meeting costs and expenses**<br>**Annual report and AGM costs**<br>**Investment management costs**<br>**Operations**<br>**Building support**<br>**Information technology**<br>**Finance including non**<br>**recoverable VAT**|-<br>4,170<br>4,170<br>Governance 100%<br>-<br>714<br>714<br>Governance 100%<br>-<br>4,128<br>4,128<br>Governance 100%<br>13,166<br>-<br>13,166<br>Investment management 100%<br>279,501<br>53,454<br>332,955<br>Allocated according to input<br>between governance and general<br>support (pro rata on full time<br>equivalent staff numbers)<br>260,478<br>-<br>260,478<br>Pro rata on full time equivalent<br>staff numbers<br>347,603<br>-<br>347,603<br>Pro rata on full time equivalent<br>staff numbers<br>172,189<br>8,083<br>180,272<br>Allocated according to input<br>between governance and general<br>support (pro rata on full time|-<br>4,170<br>4,170<br>Governance 100%<br>-<br>714<br>714<br>Governance 100%<br>-<br>4,128<br>4,128<br>Governance 100%<br>13,166<br>-<br>13,166<br>Investment management 100%<br>279,501<br>53,454<br>332,955<br>Allocated according to input<br>between governance and general<br>support (pro rata on full time<br>equivalent staff numbers)<br>260,478<br>-<br>260,478<br>Pro rata on full time equivalent<br>staff numbers<br>347,603<br>-<br>347,603<br>Pro rata on full time equivalent<br>staff numbers<br>172,189<br>8,083<br>180,272<br>Allocated according to input<br>between governance and general<br>support (pro rata on full time|
|---|---|---|
|||equivalent staff numbers)|
|**Total**|1,072,937<br>92,549<br>1,165,486||



34 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **6. Expenditure** 

|**Raising Funds**|**Grants**<br>**payable**<br>**£**|**Total Activity**<br>**Costs**<br>**Total**<br>**Support Costs**<br>**Total**<br>**expenditure**<br>**2021**<br>**£**<br>**£**<br>**£**|**Total Activity**<br>**Costs**<br>**Total**<br>**Support Costs**<br>**Total**<br>**expenditure**<br>**2021**<br>**£**<br>**£**<br>**£**|**Total Activity**<br>**Costs**<br>**Total**<br>**Support Costs**<br>**Total**<br>**expenditure**<br>**2021**<br>**£**<br>**£**<br>**£**|
|---|---|---|---|---|
|Donations & Legacies|-|567,949|303,913|871,862|
|Other Trading Activities|-|244,921|37,130|282,051|
|Investment Management Costs|-|-|13,166|13,166|
|**Raising Funds Total**|-|812,870|354,209|1,167,079|
|**Charitable Activities**|||||
|To improve the quality and healthcare services for people with epilepsy|44,453|950,799|528,296|1,523,548|
|To improve awareness and understanding of epilepsy|-|325,928|155,821|481,749|
|**Charitable Activities Total**|44,453|1,276,727|684,117|2,005,297|
|**Exceptional item**|||||
|CRM impairment|-|-|127,160|127,160|
||||||
|**Total Expenditure 2021**|44,453|2,089,597|1,165,486|3,299,536|



In 2021 a full review was carried out of the CRM project after which it was decided to reset the project and write off the existing work done. See page 18 of the Trustees’ Annual Report for further information. 

## Prior Year Expenditure 

|Prior Year Expenditure|||||
|---|---|---|---|---|
|**Raising Funds**|**Grants**<br>**payable**<br>**Total Activity**<br>**Costs**<br>**Total**<br>**Support Costs**<br>**Total**<br>**expenditure**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**||||
|Donations & Legacies<br>Other Trading Activities<br>Investment Management Costs|-<br>-|574,210<br>128,525<br>-|265,075<br>43,045<br>13,553|839,285<br>171,570<br>13,553|
|**Raising Funds Total**|-|702,735|321,673|1,024,408|
|**Charitable Activities**|||||
|To improve the quality and healthcare services for people with epilepsy|-|1,009,389|466,332|1,475,721|
|To improve awareness and understanding of epilepsy|185|442,190|184,004|626,194|
|**Charitable Activities Total**|185|1,451,579|650,336|2,101,915|
||||||
|**Total Expenditure 2020**|185|2,154,314|972,009|3,126,323|



35 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **7. Grants Payable** 

|**General**||**Restricted**|**Total**|**Total**|
|---|---|---|---|---|
|**Funds**||**Funds**|**Funds**|**Funds**|
|**2021**||**2021**|**2021**|**2020**|
|**£**||**£**|**£**|**£**|
|**Institutional grants**|||||
|**Causes and Cures research:**|||||
|Epilepsy Research UK||23,000|23,000|-|
|Medicines & Healthcare products Regulatory Agency||6,468|6,468|-|
|Accession Healthcare Consulting Ltd|-|14,985|14,985|-|
||-|44,453|44,453|-|



## **8. Staff costs and numbers** 


**----- Start of picture text -----**<br>
Staff costs were as follows: 2021 2020<br>£ £<br>Wages and salaries 1,747,329 1,873,073<br>Social security costs 166,929 177,719<br>Other pension costs 189,368 194,405<br>2,103,626 2,245,197<br>**----- End of picture text -----**<br>


During the year termination payments were paid during the year to 2 employees (2020: 2 employees) totalling to £15,366 (2020: £3,135). 

The average number of staff employed in the year was 63 equal to 55 full time equivalent (2020: 70 with 63 F.T.E) 

The average number of employees calculated on a full time equivalent basis, analysed by function was: 

|Charitable activities<br>Management and administration of the charity<br>Fundraising and publicity|**2021**<br>**2020**<br>**No**<br>**No**<br>30<br>35<br>11<br>12<br>14<br>16|
|---|---|
||55<br>63|



The number of higher paid employees was: 


**----- Start of picture text -----**<br>
2021 2020<br>No No<br>In the band £70,001 - £80,000 1<br>In the band £80,001 - £90,000<br>In the band £90,001 - £100,000 1 1<br>**----- End of picture text -----**<br>


Pension costs attributed to the higher paid employees amounted to £8,465 (2020: £8,629). No payment for annual leave or other benefits has been accrued. 

No members of the Council of Management received any remuneration in respect of their duties as trustee during the year (2020: £nil). Pension creditor at year end was £nil (2020: £16,938). 

36 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **9. Analysis of resources used** 

The following have been charged to the Statement of Financial Activities: 

||**2021**|**2020**|
|---|---|---|
||**£**|**£**|
|Depreciation of tangible assets|26,334|6,497|
|Impairment|127,160|-|
|Hire of land and buildings|63,000|63,000|
|Hire of office equipment|505|508|
|Auditor's remuneration|22,000|21,000|
|Remuneration of auditors for non audit work|4,170|3,365|



## **10. Tangible Fixed Assets** 

|**Cost**<br>At 1 January 2021<br>Additions during the year<br>At  31 December 2021<br>**Depreciation**<br>At 1 January 2021<br>Charge for the year<br>At 31 December 2021<br>**Net book value**|**Leasehold**<br>**improvements**<br>**Fixtures,**<br>**fittings and**<br>**equipment**<br>**Computers**<br>**Total**<br>**£**<br>**£**<br>**£**<br>**£**<br>151,210<br>64,528<br>58,057<br>273,795<br>-<br>-<br>28,651<br>28,651|
|---|---|
||151,210<br>64,528<br>86,708<br>302,446|
||123,961<br>54,956<br>52,129<br>231,046<br>7,472<br>2,801<br>16,061<br>26,334|
||131,433<br>57,757<br>68,190<br>257,380|
|||
|At 31 December 2021|19,777<br>6,771<br>18,518<br>45,066|
|At 31 December 2020||
||27,249<br>9,572<br>5,928<br>42,749|



37 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **11. Intangible Fixed Assets** 

|**Cost**<br>At 1 January 2021<br>Additions during the year<br>At  31 December 2021<br>**Amortisation**<br>At 1 January 2021<br>Charge for the year|**CRM**<br>**Website**<br>**Total**<br>**£**<br>**£**<br>**£**<br>122,687<br>-<br>122,687<br>4,473<br>62,255<br>66,728|
|---|---|
||127,160<br>62,255<br>189,415|
||-<br>-<br>-<br>-<br>-<br>-|
|Impairment|127,160<br>-<br>127,160|
|At 31 December 2021<br>**Net book value**|127,160<br>-<br>127,160|
|||
|At 31 December 2021|-<br>62,255<br>62,255|
|At 31 December 2020||
||122,687<br>-<br>122,687|



No amortisation was charged in the year as the Website is in the development phase. 

The work completed to the end of 2021 amounted to £127,160 which was capitalised. The decision was taken to write the total amount of £127,160 off in 2021. Further detail can be found on page 18 within the Trustees’ Annual Report. 

## **12. Fixed Asset Investments** 

|**Market value**<br>At 1 January 2020<br>Additions|**Listed**<br>**securities**<br>**Unlisted**<br>**securities**<br>**Total**<br>**£**<br>**£**<br>**£**<br>2,345,133<br>10<br>2,345,143<br>-<br>-|
|---|---|
|Disposals|-<br>-|
|Revaluations|212,184<br>-<br>212,184|
|**At 31 December 2020**|2,557,317<br>10<br>2,557,327|



**Investments at market value comprise:** 

|Listed investments<br>Investment in subsidiary undertaking<br>Total market value|**2021**<br>**2020**<br>**£**<br>**£**<br>2,557,317<br>2,345,133<br>10<br>10|
|---|---|
||2,557,327<br>2,345,143|



All the fixed asset investments are held in the UK. 

38 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## Valuation 

At valuation on acquisition the quoted investments would be shown at £2,167,559 (2020: £1,977,042). All quoted investments are managed by Brewin Dolphin Securities Limited on a discretionary basis. 

## Material investments 

There are no investments that individually account for more than 7% of the value of the total portfolio. 

## **13. Subsidiary Undertakings** 

The Association owns 100% of the issued ordinary share capital of BEA Trading Limited, a company incorporated in England and Wales. The subsidiary is engaged in fundraising activities, the distribution of Christmas cards, associated gifts and the promotion of BEA insurances and publishing. Its financial year ends 30 June rather than 31 December. This ensures that full account is taken of the Christmas trade which forms the majority of the subsidiary's business within there being any need to delay the finalisation of the Association's own accounts. 

The accounts of the subsidiary do not justify consolidation as the turnover is not deemed to be material to the Association as a whole. The materiality of the trading company will be reviewed on an annual basis, thus ensuring that the financial statements continue to be prepared using best accounting practice. 

The trading results of BEA Trading Limited for the year to 30 June were as follows: 

|Turnover<br>Trading profit|**2021**<br>**2020**<br>**£**<br>**£**<br>74,594<br>112,153|
|---|---|
||22,812<br>26,825|



A gift aid donation of £22,812 (2020: £26,825) has been received by the Association from BEA Trading Limited and is shown on the Statement of Financial Activities. The net assets of the subsidiary are £30,010. 

The Association is also the sole member of Epilepsy UK and Epilepsy Action. Both companies are incorporated in England and Wales, have been dormant since incorporation and are Limited by Guarantee. British Epilepsy Association uses the working name 'Epilepsy Action' across its range of activities. 

## **14. Debtors** 

|**Due within one year:**<br>Trade debtors<br>Social security and other taxes<br>Amounts owed by group undertaking<br>Other debtors<br>Prepayments and accrued income|**2021**<br>**2020**<br>**£**<br>**£**<br>2,074<br>3,446<br>12,128<br>8,985<br>21,101<br>25,426<br>25,538<br>109,759<br>185,454<br>170,705|
|---|---|
||246,295<br>318,321|



39 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **15. Creditors** 

|**Amounts falling due within one year:**<br>Trade creditors<br>Social security and other taxes<br>Other creditors and accruals|**2021**<br>**2020**<br>**£**<br>**£**<br>58,398<br>65,672<br>44,026<br>45,818<br>88,772<br>94,360|
|---|---|
||191,196<br>205,850|



## **16. Analysis of net assets between funds** 

|Fixed assets<br>Fixed asset investments<br>Cash at bank and in hand|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2021**<br>**2021**<br>**2021**<br>**2021**<br>**£**<br>**£**<br>**£**<br>**£**<br>107,321<br>-<br>-<br>107,321<br>2,343,348<br>-<br>213,979<br>2,557,327<br> (63,284)<br>468,206<br>474,111<br>879,033|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2021**<br>**2021**<br>**2021**<br>**2021**<br>**£**<br>**£**<br>**£**<br>**£**<br>107,321<br>-<br>-<br>107,321<br>2,343,348<br>-<br>213,979<br>2,557,327<br> (63,284)<br>468,206<br>474,111<br>879,033|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2021**<br>**2021**<br>**2021**<br>**2021**<br>**£**<br>**£**<br>**£**<br>**£**<br>107,321<br>-<br>-<br>107,321<br>2,343,348<br>-<br>213,979<br>2,557,327<br> (63,284)<br>468,206<br>474,111<br>879,033|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2021**<br>**2021**<br>**2021**<br>**2021**<br>**£**<br>**£**<br>**£**<br>**£**<br>107,321<br>-<br>-<br>107,321<br>2,343,348<br>-<br>213,979<br>2,557,327<br> (63,284)<br>468,206<br>474,111<br>879,033|
|---|---|---|---|---|
|Branch balances|62,493|-|10,880|73,373|
|Other current assets<br>Creditors due within one year<br>Total net assets at 31 December 2021|246,295<br>-<br>-<br>246,295<br> (152,675)<br>-<br> (38,521)<br> (191,196)||||
||2,543,498<br>468,206<br>660,449<br>3,672,153||||



## **Analysis of net assets between funds – previous year** 

|Fixed assets<br>Fixed asset investments<br>Cash at bank and in hand|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2020**<br>**2020**<br>**2020**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>165,436<br>-<br>-<br>165,436<br>2,131,031<br>-<br>214,112<br>2,345,143<br> (85,871)<br>310,320<br>524,815<br>749,264|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2020**<br>**2020**<br>**2020**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>165,436<br>-<br>-<br>165,436<br>2,131,031<br>-<br>214,112<br>2,345,143<br> (85,871)<br>310,320<br>524,815<br>749,264|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2020**<br>**2020**<br>**2020**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>165,436<br>-<br>-<br>165,436<br>2,131,031<br>-<br>214,112<br>2,345,143<br> (85,871)<br>310,320<br>524,815<br>749,264|**General**<br>**Funds**<br>**Designated**<br>**Funds**<br>**Restricted**<br>**Funds**<br>**Total**<br>**Funds**<br>**2020**<br>**2020**<br>**2020**<br>**2020**<br>**£**<br>**£**<br>**£**<br>**£**<br>165,436<br>-<br>-<br>165,436<br>2,131,031<br>-<br>214,112<br>2,345,143<br> (85,871)<br>310,320<br>524,815<br>749,264|
|---|---|---|---|---|
|Branch balances|61,481|-|10,792|72,273|
|Other current assets<br>Creditors due within one year<br>Total net assets at 31 December 2020|318,321<br>-<br>-<br>318,321<br> (167,329)<br>-<br> (38,521)<br> (205,850)||||
||2,423,069<br>310,320<br>711,198<br>3,444,587||||



40 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **17. Statement of Funds** 

|**General funds**<br>General funds|**Balance**<br>**01/01/2021**<br>**Income**<br>**Transfers**<br>**Expenditure**<br>**Gains**<br>**(Losses)**<br>**Balance**<br>**31/12/2021**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**|
|---|---|
||2,423,069<br>3,118,684<br>(285,991)<br>(2,906,719)<br>194,455<br>2,543,498|



## Transfers 

£285,991 was transferred from the general fund to the designated fund for the CRM database project. 

|**Designated funds**<br>CRM Database Project<br>Barabara Jean Quinn - South Wales<br>Fund<br>Roger Victor Crawley - Research<br>George Cowell Legacy - Liverpool|**Balance**<br>**01/01/2021**<br>**Income**<br>**Transfers**<br>**Expenditure**<br>**Gains**<br>**(Losses)**<br>**Balance**<br>**31/12/2021**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**<br>**£**<br>241,169<br>-<br>285,991<br>(127,160)<br>-<br>400,000<br>10,945<br>-<br>-<br>(10,945)<br>-<br>-<br>33,206<br>-<br>-<br>-<br>-<br>33,206<br>25,000<br>10,000<br>-<br>-<br>-<br>35,000|
|---|---|
||310,320<br>10,000<br>285,991<br>(138,105)<br>-<br>468,206|



## **CRM database project** 

Monies designated for the implementation of a CRM system. In 2021 a full review was carried out after which it was decided to reset the project and write off the existing work done. After completing a tender process for a new CRM product supplier, the Council of Management designated a further £285,911 to the project. 

## **Barbara Jean Quinn - South Wales Fund** 

Funds received from the estate of Barbara Jean Quinn which she wished to be used to support Epilepsy Action’s work in South Wales. 

## **Roger Victor Crawley - Research** 

Funds received from the estate of Roger Victor Crawley which he wished to be used for research. 

## **George Cowell Legacy - Liverpool** 

Funds received from the estate of George Cowell which he wished to be used in Liverpool. 

41 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 


**----- Start of picture text -----**<br>
Balance  Gains  Balance<br>Restricted funds Income Transfers Expenditure<br>01/01/2021 (Losses) 31/12/2021<br>£ £ £ £ £ £<br>Octavia Morris Memorial Fund 11,754  - - - - 11,754<br>Research Fund - general 195,796  14,236  - (32,580) - 177,452<br>Research Fund - Causes and Cures 220,227  6,674  - (30,148) 17,729  214,482<br>TeamMax research 5,216  - - - - 5,216<br>Local Services<br>DHSS Northern Ireland  - 12,134  - (12,134) - -<br>Education Fund (Basildon & Thurrock) 3,685  - - 0  - 3,685<br>Gloucestershire 1,179  - - 0  - 1,179<br>My Family & Me Events 7,800  (4,200) - 0  - 3,600<br>Regional Funds - 5,890  - (5,890) - -<br>Salisbury & District 823  - - - - 823<br>South Warwickshire 1,500  - - - - 1,500<br>Branches<br>Essex 5,103  88  - - - 5,191<br>Stoke 5,400  - - - - 5,400<br>West Midlands Forum - Shrewsbury 161  - - - - 161<br>Other branches 128  - - - - 128<br>Projects<br>Colin Woods Memorial Fund 147,632  7,500  - (30,000) - 125,132<br>Commissioning Advocates 1,577  - - - - 1,577<br>Employment Project 28,727  - - (28,727) - -<br>Epilepsy Alliance 453  - - - - 453<br>Epilepsy & You Regional Bursaries 3,496  - - (3,496) - -<br>Epilepsy Commissioning Toolkit 1,025  - - - - 1,025<br>Extended Helpline project 26,997  - - (26,997) - -<br>HealthCoach 12,778  - - - - 12,778<br>Helpline Services - 25,085  - (24,085) - 1,000<br>Leeds - Hardcastle Legacy - 31,670  - (31,670) - -<br>Online Learning - 14,000  - (14,000) - -<br>People with Epilepsy And Learning<br>Difficulties 12,500  5,000  - - - 17,500<br>Sanofi - Web Mobilisation 5,000  - - - - 5,000<br>Sapphire Nurse Scheme 10,067  - - - - 10,067<br>Step Together Benchmarking Tool - 30,000  - (14,985) - 15,015<br>The Estate of Nellie Terrett - 38,157  - - - 38,157<br>Tricia's Fund - Learning Disability<br>Project 2,174  - - - - 2,174<br>Restricted  Funds 711,198  186,234  - (254,712) 17,729  660,449<br>Total funds 3,444,587  3,314,918  - (3,299,536) 212,184  3,672,153<br>**----- End of picture text -----**<br>


Restricted income and expenditure, which is reviewed and monitored on a regular basis, represents monies received and expended on specific projects. 

A comparative for the prior year can be found in the 2020 annual accounts. 

42 



## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **Octavia Morris Memorial Fund** 

Funds being held to fund a campaign during 2015 - 2022 on the subject of epilepsy related death. 

## **Research Funds** 

The balance retained on the general research fund is for social and medical research of a non-laboratory nature. £214,482 is retained specifically for Causes and Cures research. The Team Max fund is to support research into childhood epilepsies. 

## **DHSS Northern Ireland** 

Statutory funding towards salary costs of the NI manager. 

## **Education Fund - Basildon & Thurrock** 

To deliver awareness sessions in Basildon and Thurrock. 

## **Gloucestershire** 

Donation for use in Gloucestershire only. 

## **My Family & Me Events** 

Money raised to support UK wide family events. 

## **Regional Funds** 

Comprises funds raised in England, Wales and Northern Ireland that are to be spent specifically in those areas. 

## **Essex Branch** 

Money raised by the Essex forum for local projects across Essex. 

## **Stoke Branch** 

Money raised by the branch for local projects. 

## **West Midlands Branch** 

Money raised by the branch for local projects. 

## **Colin Woods Memorial Fund** 

Money in this fund is invested by Epilepsy Action and income derived from the fund is used to support Epilepsy Action’s work, with a preference given to work in Northern Ireland and for educational work but the income is not restricted solely for these purposes. 

## **Employment Project** 

To develop resources for employers to assist people with epilepsy in the workplace. 

## **Epilepsy Alliance** 

Epilepsy Alliance is a collaboration between Epilepsy Action and the Epilepsy Nurse Association to provide a dedicated package of educational support for Epilepsy Specialist Nurses (ESNs) covering the UK. 

## **Epilepsy and You Regional Bursaries** 

Funded places for our Epilepsy and You self-management course. 

## **Epilepsy Commissioning Toolkit** 

To create a single access point of resources to support effective commissioning for children and adults with epilepsy. 

## **Extended helpline project** 

To extend the opening hours of the helpline and increase access to the service. 

## **Healthcoach** 

Telephone support for participants of Epilepsy and You. 

## **Helpline services** 

Monies raised to enable the continuing running of the helpline. 

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## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **People with Epilepsy and Learning Difficulties** 

To create resources for people with epilepsy and learning difficulties. 

## **Sanofi - Web Mobilisation** 

To develop our website and make it mobile friendly. 

## **Sapphire Nurse Scheme** 

To part fund epilepsy nurse posts in NHS services for adults or children with epilepsy. 

## **Step Together Benchmarking Tool** 

To create an interactive tool to allow commissioners to gather information about services in their area. 

## **The Estate of Nellie Terrett** 

Monies left to be spent in conjunction with Epilepsy Action Cardiff Branch. 

## **Tricia's Fund - Learning Disability Project** 

To develop resources for people with epilepsy and learning disabilities. 

## **18. Indemnity Insurance** 

During the year the Association incurred costs for insurance cover against the possible loss arising to the Association from the neglect of defaults of its trustees or agents and to indemnify the trustees and other officers against the consequences of any neglect or default. 

## **19. Financial Commitments** 

At 31 December 2021 the Association had total minimum lease payments under non-cancellable operating leases as follows: 

||**Land and buildings**<br>|**Land and buildings**<br>|**Other**|**Other**|
|---|---|---|---|---|
||**2021**|**2020**|**2021**|**2020**|
||**£**|**£**|**£**|**£**|
|**Expiry date**|||||
|Within 1year|63,000|63,000|4,021|2,146|
|Between 2 and 5years|105,115|168,115|-|994|



## **20. Analysis of Trustee remuneration and expenses, and the cost of key management personnel.** 

The key management personnel of the charity, comprise the trustees, the Chief Executive and the Deputy Chief Executive. 

Total employee benefits, including employers NIC, of the key management personnel of the charity were £163,807 (2020: £197,436). 

No charity trustee received payment for professional or other services supplied to the charity (2020: £nil). Travel and subsistence expenses during the year of £714 (2020: £1,113), were reimbursed to or paid on behalf of the 16 trustees who served during the year (see also page 7 of the Trustees' annual report). 

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## **British Epilepsy Association Notes to the financial statements** 

for the year ended 31 December 2021 

## **21. Related Party Transactions** 

There were no related party transactions during the year (2020: £nil) 

## **22. Financial Instruments** 

The carrying amount of the company’s financial instruments at 31[st] December 2021 were: 

|**Financial Assets**<br>Debt instruments measured at amortised cost<br>**Financial Liabilities**<br>Measured at amortised cost|**2021**|**2020**<br>**£**<br>122,357<br>99,589|
|---|---|---|
||**£**||
||||
||124,001||
||||
||||
||102,315||



## **23. Capital commitments** 

The Association has capital commitments of £246,960 (2020: £100,000) relating to the replacement of the CRM database. 

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## Glossary 

The annual report and accounts have to provide detailed information to meet company and charity law. We know that many people will be unfamiliar with some of the words that we need to use. Here is a list of some of them with a brief explanation of what they mean. 


**----- Start of picture text -----**<br>
Accruals basis  Income and expenditure is counted when the money is earned and when costs happen,<br>rather than when the money actually enters or leaves the account.<br>Accrued  An expense that has happened but hasn’t been paid yet. For example, staff wages accrue<br>until the day they are paid.<br>Capital growth An increase in the market price of an asset.<br>Designated funds  If part of an unrestricted fund is set aside for a particular project, it may be designated as a<br>separate fund.<br>Donations in kind A donation that is made in goods or services, rather than money.<br>Ex officio  When someone is a member of a committee without being elected to it but because of<br>another post that they hold.<br>Fixed assets An asset with a useful life of more than one year.<br>Listed investments Investments like shares or bonds that are officially listed on a stock exchange for trading.<br>Materiality  An amount of money is assessed on its importance. For example, a debt of £10 might not<br>be a concern. However, a debt of £10,000 could make a big difference to the financial<br>health of the organisation. It makes a material difference to the accounts.<br>Realised gains A gain from selling an asset for more than the original purchase price.<br>Reconciliation  An accounting process that compares two sets of records to make sure the numbers match<br>and are accurate.<br>Residual value The value of an asset that it could be sold for at the end of its useful life.<br>Restricted funds  If someone gives money to the charity for a particular purpose, the charity has to use it for<br>that purpose. The use of the money is restricted.<br>Straight line basis  This is a way of spreading the cost of an asset equally over the number of years it is<br>expected to be used.<br>Tangible fixed assets Physical assets, like a computer system or improvements to a building.<br>Unrealised gain/loss A gain/loss from revaluing an asset at a higher value than the original purchase price.<br>Unrestricted funds  If someone gives money to the charity without saying it is for a particular purpose, it can be<br>spent on any area of work for the charity’s objects. The use of the money is unrestricted.<br>**----- End of picture text -----**<br>


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