Annual Report 2024
Registered Charity Number 326679
Medical Advisory Panel ......................................................................................................................... 1 Chair’s Report ....................................................................................................................................... 4 Fundraising Report ................................................................................................................................ 9 Report of the Trustees for the year ended 31 August 2024 .................................................................12 Staff and Trustees ...............................................................................................................................14 Report on Financial Statement 2023/24 ..............................................................................................15 Statement of Financial Activities 2023/24 ............................................................................................16 Statement of Financial Activities 2022/23 ............................................................................................17 Balance Sheet .....................................................................................................................................18 Notes to the Accounts .........................................................................................................................19 Independent Examiner’s Report ..........................................................................................................21
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Robert J Moots
Clive B Archer
Chair of Advisory Panel
Professor of Rheumatology/Consultant Rheumatologist
BSc (Hons), MB BS (Hons),
PhD, FRCP Where qualified: Imperial College, London 1985
University Hospital Aintree,
Cons Dermatologist & Hon Clinical Snr Lecturer Qualifications/ Post Nominals: BSc (Hons), MB BS, MRCP (UK), MD (Lond), PhD, MRCS (Engl), FRCP (Lond), FRCP (Edin), FRCP (Glasg), PG Cert, PG Diploma & MSc in
Where qualified: Guy’s Hospital Medical School, University of London oo. ae 1978
University of Liverpool Special interests: Clinical and basic science, Behçet’s
Trust and honorary senior clinical lecturer at King’s College London (KCL).
Adnan Al-Araji
Special interests: Clinical interests in inflammatory skin diseases, benign and malignant skin tumours, immunobullous diseases; research interests in immunopharmacology, cell regulatory mechanisms and medical education Paul Brogan
Consultant Neurologist
MB ChB, FRCP, FRCP
(Glasg.)
Where qualified: Baghdad, Iraq
1977
Royal Stoke University Hospital,
Stoke-on-Trent
Special interests: sclerosis and other
Member of:
London; past-Convenor, Neuro Behçet Study Group/
Faculty of Pop Health Sciences Qualifications/Post Nominals: BSc, MBBS, MRCP, Dip
GUM, Dip HIV, MJCSM Where qualified: Manchester Medical School Year of initial qualification: 1993 Currently practising at: Great Ormond St Hospital,
London
Special interests:
sclerosis and other inflammatory diseases of the central
Special interests:
young
Sclerosis Centre of Excellence.
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Andrew de Burgh-Thomas
Consultant in Genitourinary Medicine BSc, MBBS, MRCP, Dip
GUM, Dip HIV
Where qualified: University of London 1994
Currently practising at: Gloucester Royal Hospital, Cheltenham General Hospital and Bristol Southmead Hospital
Desmond Kidd
Consultant Neurologist
MD BCh BAO MD FRCP
Where qualified: Ireland
1986
at Royal Free Hospital London Special interests: Neurological
Member of:
FSRH, ESSM
Special interests: HIV and genital dermatology
Philip Ian Murray
Farida Fortune CBE
Professor of Ophthalmology, University of Birmingham
Director London Behçet’s Centre, Barts Health and Queen Mary University of London
Qualifications/Post Nominals: FRCP, FRCS, FDS, RCS, PhD Where qualified: University College London Year of initial qualification: Dentistry 1975; Medicine
PhD, FRCP, FRCS,
FRCOphth
Where qualified: St George’s Hospital Medical School, University of London
1978 ;
1980
Barts Health, Royal London site Queen Mary University of London Special interests: Immunology and Oral Medicine
at Birmingham and Midland Eye Centre but continues with research and teaching.
Special interests:
Scleritis. Clinical Research : Quality of Life in Laboratory Research: The eye has evolved many
Dorian O Haskard
Job title: Professor of Cardiovascular Medicine and Rheumatology, Imperial College
Qualifications/Post Nominals: DM FRCP FMedSci Where qualified : University of London 1977
at Imperial College London/Hammersmith Hospital Special interests: Vascular inflammation
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Catherine Nelson-Piercy
Professor Obstetric Physician Job feat / post Nominal MBBSMA, FRCP, FRCOG Qualifications/ Post Nominals: Where qualified: CambridgeUniversity and St Bartholomew’s Hospital
ear off initiainitial qua lificatiication : 1986 Currently practising at: Guy’s and St Thomas’ Hospitals
Special interests: Medical problems in pregnancy, . ., .
Graham Wallace
Associate Professor Senior Lecturer, Qualifications/Post Nominals: BSc Immunology, PhD
Where qualified: University of London
Ageing, University of Birmingham Special interests: Ocular immunology, Behçet’s disease,
thromboembolism, cardiac and renal disease.
Job title: Professor of Oral and Dermatological Medicine KCL/Honorary Consultant Dermatologist Where qualified: University College Hospital, London
1987
Guy's and St Thomas' NHS
and St Mary’s, Paddington, London
Member of:
Special interests: Oral medicine, immunobullous disease, autoimmune disorders
Research
immunobullous diseases and lichen planus
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Overview
Governance
The governance of the Society remains mature and comprehensive in accordance with Charity Commission
improve efficiency considerably. Board membership has remained stable, for which as Chair I am most
accounts. I take this opportunity, as always, to thank our trustees on your behalf, for their significant
ensure we are moving forward in harmony and aligned with long-term goals.
Annual Conference
whom 71 were in person and 100 online. Dr Deva Situnayake and his team from Birmingham kindly sponsored the occasion. The 2023 Judith Buckle Award was presented to Barrie and Georgina Seaman who joined the
Honorary Treasurer. The Chair presented the Members Award to Clare Gibson who has been a member since
amazing success in the Invictus Games 2023, held in Dusseldorf; securing three Gold and two Silver medals.
Behçet’s Friends and Family Day
book a place.
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Newsle�er
Our Newsle�ers con�nue to offer much informa�on and support to members. Our Editor, Clare Griffith, who masterminds their compila�on is thanked for the high quality of standard produced. All contributors are thanked for their posi�ve ar�cles, which Judi Sco� collates. This is a core product of the Society, including significant input from the Behçet's Pa�ents Centres. We con�nue to promote the use of our electronic version, which helps save money, but the printed version will remain where demand exists.
Medical Factsheets and Alert Card
Our Medical Fact Sheets are reviewed and amended rou�nely, which are important points of reference to both pa�ents and clinicians. They remain a significant source of informa�on par�cularly for pa�ents who are ‘new to Behçet's’ and are referenced by all four Na�ons’ NHS websites. I con�nue to be frustrated that no progress has been achieved to have an accompanying NHS logo printed on our revised Alert Card.
Medical Advisory Panel
This is an area which s�ll needs work to revitalise with succession planning in mind.
Fundraising and Membership
We have again witnessed the generosity of individuals to con�nue to give of their �me and effort to raise essen�al funds for the Society - £25k in Fundraising ac�vi�es and dona�ons this past year. Neil Williams is working-up our Fundraising Strategy and seeks addi�onal members with appropriate skills to assist him. We have to establish underpinning predictable income genera�on as de rigueur, as notwithstanding the aforesaid generous dona�ons, and the considerable endeavours of individuals to raise money for the Society, we currently do not cover our costs. Our membership stands at 1314 standard members, compared with 1297 last year, 35 junior members and 67 associate members (mainly medical professionals).
Research
I have rou�nely stated that whilst research is important, much of it (if not all presently) the Society have no control over. When funds permit, we need to conduct a Priority Se�ng Partnership with the James Lind Alliance, to set the 10 most important research ques�ons that are mutually agreed, by a robust and well-established process, that clinicians, researchers and most importantly ‘the pa�ent perspec�ve’ agree. It is regarded as the ‘Gold Standard’ and thus a�racts researchers with an eye on their progressing careers – which subliminally would increase interest in Behçet's into the bargain.
I comment under the heading ‘looking forward’ the issue of a Behçet's Pa�ent Registry so will not repeat here. A ‘Natural History study of Behçet's within the UK’ should follow. We then need to get into Whole Genome Sequencing at scale. Professor Graham Wallace con�nues to conduct much research, some of which we help fund. Professor Fortune con�nues to support her PhD students with research papers as does Professor Moots.
Other Research - Secukinumab
Professor Moots secured significant funding from Novar�s for a major trial on the biologic Secukinumab, which is a biologic that is extensively used, and highly effec�ve, in several inflammatory condi�ons such as psoriasis. It inhibits interleukin 17 and has a be�er side-effect profile than infliximab. Behçet’s UK has pledged £35k to assist with the recrui�ng of pa�ents, �me for which needed to be extended and thus added to costs.
Suppor�ng Ini�a�ves
Bri�sh Associa�on of Dermatologists and Bri�sh Society for Rheumatology living guideline for managing people with Behçet’s 2024
This important joint ini�a�ve was promulgated in September 2024, and as noted last year is an important ini�a�ve. First, the visibility it will offer to members of the Bri�sh Associa�on of Dermatologists (BAD) and Bri�sh Society for Rheumatology (BSR) will ensure much more awareness of the condi�on. Second, it has been produced for our own community within the UK. Whilst there remains a current EULAR guideline it was noted in the most recent Interna�onal Society for Behçet's Disease Conference in Marrakech (ICBD 2024) that the
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phonotype (observable traits) varies from country to country. Therefore, it is important to have a guideline tailored to our own na�on and wri�en by those who treat pa�ents in the UK.
We are most grateful to all those who kindly gave of their own �me, unpaid, to ‘pull this together’ over a period of 5-years: they are Ruth Murphy, Robert Moots, Paul Brogan, Aykut Çelik, Mark Clement-Jones, Ian Coulson, Adam Cro�, Suzanne Crozier, Laura Forrest, Jonathan Harrold, Steve Higgins, Ali Jawad, Seema Kalra, Sidra Khan, Hilary McKee, Clare Pain, Harry Petrushkin, Ana Poveda-Gallego, Jane Se�erfield, Poonam Sharma, Richard West, Chris�na Wlodek, Maria Hashme, Lina Manounah, Firouz Mohd Mustapa, and Alina Constan�n - on behalf of the Bri�sh Associa�on of Dermatologists’ Clinical Standards Unit and the Bri�sh Society for Rheumatology.
I wish to pay par�cular thanks to Richard West and Laura Forest who represented the all-important ‘pa�ent view’ and for their �me and effort reviewing the guideline, and indeed wri�ng-up some aspects. Also, Professor Ruth Murphy who was a driving force behind this ini�a�ve. As a ‘living guideline’ this is a ‘first’ in both BAD and BSR, and basically means that rather than becoming defunct in 5-year’s �me, and having to be re-wri�en, will be reviewed and update every couple of years; ensuring it is enduring and kept up-to-date with the latest scien�fic knowledge and treatment proposals. The promulga�on of this living guideline will, over �me reap wide benefits – and at some stage we will ask that an audit is conducted by the NHS against it, to gauge whether Behçet's pa�ents are indeed being served properly.
Communica�ons Strategy
I con�nue to discharge quite a personal commitment to represent the Society on Gene�c Alliance UK’s England Rare Disease Ac�on Plan Pa�ent Advisory Group, together with Beacon (formerly Findacure) Pa�ent Group Engagement Commi�ee, Na�onal Voices Heads of Policy Group, the Neurological Alliance and the Prescrip�ons Charges Coali�on and other fora.
On the genomics front, as Alliance Network Chair of the Central and South Genomic Medicine Service Alliance (GMSA) – basically the Pa�ent and Public Voice (PPV) or Pa�ent and Public Involvement (PPI) representa�ve – as I noted last year I remain alert to iden�fying opportuni�es where the Behçet's community may benefit from future ini�a�ves. A�endance at the Interna�onal Conference for Behçet's Disease, ICBD 2024 reinforced my view as to how important this issue is. Gradually, our clinician and scien�fic colleagues are gaining insights into or DNA – of which the genome only makes up 2%. It is a highly complex area and requires a systemic, collegiate approach to make meaningful progress.
Social Media
Deborah Cardinal is commended again on maintaining a keen eye to spot opportuni�es for promo�ng Behçet's UK as followers con�nue to increase. Facebook now has 2,047 followers of which 74% are from the UK. Instagram has 1,472 followers of which 52% are from the UK and has seen a 100% increase in content interac�ons. HealthUnlocked now has 5,336 ‘All Time Members’ with a high post engagement rate. On TikTok we have 122 followers, while we have only shared the Living with Behçet’s anima�on that one video has secured 4,648 views. We are registered on Linked In with 168 followers although we do not currently post on this site and this op�on will be reviewed. In sum, our online presence con�nues to increase our visibility across all age groups.
Support Groups
As I noted last year Member Support Groups remain ac�ve and popular with Clare Gibson’s England group and Rachael Humphreys’ Wales group regularly mee�ng online and Fionnuala Mc Kinley’s Northern Ireland group mee�ng online and in-person. Yvonne Morris and Catherine O’Hara con�nue to offer support to members in their areas. New ini�a�ves form members in this area are welcomed, so please get in touch with Gemma or Deborah if you have ideas.
HealthUnlocked, which is linked from our Behçet’s UK website, is a space where those with Behçet's (or those caring for individuals with Behçet's, or indeed parents of children with Behçet's) share their experiences of healthcare, free from s�gma or judgement, talk to people living with Behçet's, and gain support from each other
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and pa�ent advocacy organisa�ons. There are more than 1.5M members, 315 public communi�es, 250 condi�on areas and 300 pa�ent organisa�ons represented within HealthUnlocked. I con�nue to monitor one or two other sites, for example the discussion forum for LUPUS UK, the Na�onal Migraine Centre and Vasculi�s UK.
Poli�cal Lobbying
We con�nue to encourage members to get involved with their local poli�cians, as and when appropriate, although as I noted last year, this is best done in a coordinated manner par�cularly when requested by Behçet's UK. Gene�c Alliance UK leads in this area with whom the Society keeps in rou�ne contact.
The groups which we support are: The [England] Cross Party Group on Rare, Gene�c and Undiagnosed Condi�ons; All Party Group on Skin; the All Party Group on Rare Condi�ons in The Na�onal Assembly for Wales; The Sco�sh Parliament Cross-party Group on Rare, Gene�c and Undiagnosed condi�ons; and the Prescrip�on Charges Coali�on; the All-Party Group for Rare Disease at the NI Assembly, with the assistance of the Northern Ireland Rare Disease Partnership (NIRDP). NIRDP also work closely with: the Northern Ireland Department of Health; the Health and Social Care Board; Public Health Agency and the Pa�ent Client Council. Behçet's UK remains affiliated with Pa�ent Representa�ve Organisa�ons in the UK (e.g. Gene�c Alliance UK, Unique).
I maintain links with the Republic of Ireland (IPPOSI, MRCG and GRDO) and Europe (EURORDIS), as well as with a wide range of condi�on-specific groups and organisa�ons. My a�endance at the 2024 EURODIS Open Academy School on Scien�fic Innova�on & Transla�on Research was helpful in this regard in establishing new contacts – a number of whom I met men�oned Richard West, who did a grand job in this regard.
Helpline
Calls to the Helpline remain an important area that the Society provides. This func�on con�nues to be carried out on most days by the Tony Thornburn and Fionnuala Mc Kinley, with Catherine O’Hara and Gemma Darlow in close support who are all thanked for their vital contribu�ons. We con�nue to seek more volunteers for this role, bearing in mind that longevity in post is important as costs with administra�ve checks are invoked in providing the necessary prepara�on for individuals involved in this endeavour. Trustees con�nue to review this aspect going forward.
Devolved Na�ons
Our representa�ves in the Devolved Na�ons con�nue to carry out an important role; Catherine O’Hara, our Vice Chair, in Scotland, Rachael Humphreys in Wales and Fionnuala Mc Kinley in Northern Ireland. Our efforts to establish a Behçet's Specialist Nurse post in Scotland, to help coordinate care in a diverse area, is progressing with the support par�cularly of Dr Mar�na Rodie BSc MBChB MRCPCH PhD who co-chairs the Rare Disease Implementa�on Board (RDIB) in Scotland. Our Patron, Baroness Margaret Ritchie, stands ready to assist in Northern Ireland – as with many things, �ming is of the essence, and recent elec�ons have inevitably delayed ma�ers.
Looking Forward
The recent Interna�onal Conference for Behçet's Disease 2024, which I a�ended, confirmed the judgement I made way back in December 2018, circulated to the three Clinical Directors of the Centres of Excellence, that we need to establish a UK Behçet's Pa�ent Registry which needs to be managed by, effec�vely a ‘neutral bystander’ - e.g. Behçet's UK - for the benefit of all and cater for succession planning when our experienced clinicians inevitably re�re. It should not, for example, be housed under one NHS University Hospital Trust, ensuring that no conflicts of interest ever emerge. That said, as I did last year, “it is vital that members fully support this ini�a�ve and allow their data to be shared in a fully secure environment with safeguards in place to anonymise, when required, to ensure pa�ent confiden�ality”. Without this fundamental principle the register will not achieve the desired outcome required.
On the clinical side, we con�nue to benefit from the three specialist Na�onal mul�-disciplinary Centres of Excellence led by three highly renowned Clinical Director’s; Professor Rob Moots, Professor Farida Fortune CBE
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and Dr Deva Situnayake. The Behçet's Pa�ents Support staff, namely Jean Chris�ans, Rebecca Hyder and Jackie Pooler, managed by John Mather (and now Denise Lavers) the Opera�ons Manager directly support them. John is thanked for his considerable efforts to guide this vital aspect since the forma�on of the Centres.
Conclusion
I make no apology for repea�ng much of what I said in last year’s report. Facts don’t change, though circumstances (context) do of course. The Society con�nues to discharge its responsibili�es and is strengthening its posi�on in many areas within the wider rare disease community. The promulga�on of the BAD/BSR living guideline will over �me reap wide benefits – and at some stage we will ask that an audit is conducted against it, to gauge whether Behçet's pa�ents are being properly served.
Our financial posi�on is rela�vely strong, by comparison to the past, but only thanks to three significant bequests, allowing rou�ne annual expenditure to be guaranteed for future years, and research and support ini�a�ves to be ini�ally progressed. But, as our Treasurer notes, ‘normal’ income that can be expected by the Society is now significantly less than our essen�al expenditure. This reinforces the point I made last year of the need to establish underpinning predictable income genera�on as de rigueur, as without those generous dona�ons, and notwithstanding the considerable endeavours of individuals to raise money for the Society we would not currently cover our costs. We benefit from an astute Treasurer who is guiding fellow trustees in exemplary fashion.
I end, as I did last year, by thanking everyone who con�nues to make this Society the compassionate and great ins�tu�on that it is, together with the clinicians who support our pa�ents. Gemma Darlow and Deborah Cardinal significant efforts underpin all the necessary administra�ve aspects that the Society needs. Your Trustees con�nue to give of their valuable �me, voluntarily, and I am most grateful for their con�nued loyal support.
Tony Thornburn OBE
Chair of Trustees 22 September 2024
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Behçet’s UK receives no external funding and therefore relies heavily on the revenue received from fundraising. The income from fundraising enables Behçet’s UK to provide funds for new and ongoing research into the condition, grants to members who are in need, finance the Society’s presence at both national and international conferences, helps facilitate Behçet’s UK’s Annual Conference and AGM and provides part of the resources for the quarterly newsletter. It also enables the employment of our Administrator and Assistant Administrator whose efficiency and hard work ensure the smooth running of the Society.
never cease to amaze us with the events they plan and the challenges they take on. For the year from
who are keen to join and examine ways to raise much-needed funds.
Neil Williams
20 September 2024
shopping, online sales
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iim J sa Ruth held her ime annual Ladies Ball in | San 7 (ea aid of Behçet’s UK in March and again beat last years total oh hy pal raising £2421! ind
Malcolm and Ann have continued their Bakefor Behçet’s success last year by hosting more eventsas still collecting and selling postage stamps. This year they have raised over £300 for Behçet’s UK.
Our Remarkable Runners!
Laura C didn’t let her Behçet’s beat her and tackled a half marathon in Dublin and raised £972
was a non-runner with dodgy knees Mark went on to run two halfmarathons and raised . . cn:
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r
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Facebook and Instagram Fundraisers 13 members and supporters kindly set up a Facebook Fundraiser to celebrate their birthday this year, allowing
' -” William, Brenda & « ‘ — : Jenni, with the Barrossa Somme
performed to raise funds for Behçet’s UK with and raised £331
a charity football match and raffle of , tee football memorabilia Le “ey i - | L hi / i. " # i WA. and raised £1000. rte, Ap
Laura braved a skydive and with the help of her colleagues at three local branches of Natwest they have raised over £2800 (including Gift Aid) so far and are still fundraising!
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The trustees present their report along with the financial statements of the charity for the year ended 31 August
report and comply with the charity's trust deed and applicable law.
-
followed subject to any departures disclosed and explained in the financial statements; and
-
prepare the financial statements on a 'going concern' basis unless it is inappropriate to presume that
Reserves
The trustees aim to maintain reserves at a level that lies approximately between the total income that the Society would expect in a six-month period and that in a full financial year.
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Risks and public benefits
regularly.
due regard to the guidance published by the Charity Commission.
Approved by the Trustees and signed on their behalf by
Tony Thornburn OBE Chair 18 September 2024
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Trustees
Tony Thornburn OBE (Chair) Catherine O’Hara (Vice Chair)
Alan Lane (Hon. Treasurer) Mark Friston Rachael Humphreys Fionnuala McKinley Amanda Moseley Neil Williams
Staff
Gemma Darlow (Administrator) Deborah Cardinal (Assistant Administrator)
Banks
CAF Bank Limited 25 Kings Hill Avenue Kings Hill WEST MALLING ME19 4JQ
PO Box 883 LEEDS LS1 9TY Barclays Bank plc 1250 High Road, Whetstone London N20 0PB
Independent Examiner of Accounts
Clare Griffiths
Medical Advisory Panel
Prof Rob Moots Dr Adnan Al-Araji Dr Clive Archer Prof Paul Brogan Dr Andrew de Burgh-Thomas Prof Farida Fortune Prof Dorian Haskard Prof Phil Murray Dr Catherine Nelson-Piercy Dr Graham Wallace
UHY Ross Brooke Suite I, Windrush Court ABINGDON OX14 1SY
Behçet’s UK 124 City Road LONDON EC1V 2NX
Office Tel: 0345 130 7328 Helpline Tel: 0345 130 7329 Email: info@behcetsuk.org Web: behcetsuk.org
Registered Charity No: 326679
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In last year’s report, I was able to share the news that the Trustees had earmarked sums of £50k for each of two
Registry to aid research into Behçet’s. My fellow Trustees have done a great deal of work towards making these possible, but as yet we have not reached the stage of having firm plans and entering into contractual
Funds’ so that it is clear that they are not available for other purposes.
so the following accounts describe a more normal year.
The General Fund
Projects Fund, leaving accumulated reserves of £74.3k.
The Research Fund
to the Projects Fund, its reserves now stand at £17.2k.
The Projects Fund holds the total of £100k that has been earmarked for the projects stated above.
In view of the fact that the ‘normal’ income that can be expected by the Society is now
grants and staff costs, Trustees have had to make the decision to recommend members at our AGM in October
bequests in wills for the future benefit of the.
Membership
Behçet’s sufferers. In September 2024, we had 1314 standard members, compared with 1297 on that date last
benefits.
The total number of names on our database was 1437, compared with 1423 the previous year, of whom 1183
compared with 995 the previous year, a further small increase as in previous years.
Alan Lane Hon. Treasurer 9 September 2024
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| General | General | Research | Research | Projects | Total | Total | Total | Total | ||
|---|---|---|---|---|---|---|---|---|---|---|
| Fund | Fund | Fund | 2024 | 2023 | ||||||
| £ | £ | £ | £ | £ | ||||||
| Income and endowments | ||||||||||
| Donations | 22 237 | 22 237 | 390 | 0 | 22 627 | 22 627 | 27 806 | 27 806 | Note 5 | |
| Bequests and legacies | 0 | 0 | 0 | 0 | 57 081 | 57 081 | ||||
| Subscriptions | 9 141 | 9 141 | 0 | 0 | 9 141 | 9 141 | 10 051 | 10 051 | ||
| Gift Aid tax reclaimed | 3 120 | 3 120 | 20 | 0 | 3 140 | 3 140 | 5 027 | 5 027 | ||
| Grants received | 4 062 | 4 062 | 0 | 0 | 4 062 | 4 062 | 0 | Note 6 | ||
| Fundraising activities | 2 982 | 2 982 | 0 | 0 | 2 982 | 2 982 | 5 156 | 5 156 | ||
| Sales of goods | 775 | 0 | 0 | 775 | 784 | |||||
| Other | 4 663 | 4 663 | 0 | 0 | 4 663 | 4 663 | 5 085 | 5 085 | Note 7 | |
| Total income and endowments | 46 980 | 46 980 | 410 | 0 | 47 390 | 47 390 | 110 990 | 110 990 | ||
| Expenditure on charitable activities | ||||||||||
| Trading costs | 129 | 0 | 0 | 129 | 0 | |||||
| Event costs | 1 925 | 1 925 | 0 | 0 | 1 925 | 1 925 | 2 652 | 2 652 | ||
| Fundraising costs | 779 | 0 | 0 | 779 | 703 | |||||
| Staff training | 0 | 0 | 0 | 0 | 0 | |||||
| Grants and bursaries | 1 145 | 1 145 | 0 | 0 | 1 145 | 1 145 | 3 412 | 3 412 | ||
| Research grants | 0 | 0 | 0 | 0 | 0 | |||||
| Subscriptions to other organizations | 683 | 0 | 0 | 683 | 705 | |||||
| Helpline costs | 117 | 0 | 0 | 117 | 98 | |||||
| Salaries and wages | 31 623 | 31 623 | 0 | 0 | 31 623 | 31 623 | 29 055 | 29 055 | Note 8 | |
| Social security and pensions | 650 | 0 | 0 | 650 | 605 | Note 8 | ||||
| Travel and subsistence | 3 863 | 3 863 | 0 | 0 | 3 863 | 3 863 | 818 | |||
| Insurance | 988 | 0 | 0 | 988 | 913 | |||||
| Telephone charges | 585 | 0 | 0 | 585 | 515 | |||||
| Printing, postage, stationery etc. | 1 246 | 1 246 | 0 | 0 | 1 246 | 1 246 | 1 254 | 1 254 | ||
| Equipment purchases | 181 | 0 | 0 | 181 | 292 | |||||
| Newsletter | 10 375 | 10 375 | 0 | 0 | 10 375 | 10 375 | 9 672 | 9 672 | ||
| Web site and publicity | 600 | 0 | 0 | 600 | 412 | |||||
| ICT hardware | 53 | 0 | 0 | 53 | 971 | |||||
| ICT software and management | 2 651 | 2 651 | 0 | 0 | 2 651 | 2 651 | 1 102 | 1 102 | ||
| Annual Conference and AGM | 9 265 | 9 265 | 0 | 0 | 9 265 | 9 265 | 9 078 | 9 078 | ||
| Governance costs | 1 646 | 1 646 | 0 | 0 | 1 646 | 1 646 | 2 713 | 2 713 | ||
| Other | 807 | 0 | 0 | 807 | 1 267 | 1 267 | ||||
| Total expenditure | 69 311 | 69 311 | 0 | 0 | 69 311 | 69 311 | 66 237 | 66 237 | ||
| Net expenditure before gains on investments | -22 331 | -22 331 | 410 | 0 | -21 921 | -21 921 | 44 753 | 44 753 | ||
| Net gains on investments | 2 227 | 2 227 | 1 579 | 1 579 | 0 | 3 806 | 3 806 | 1 783 | 1 783 | |
| NET INCOME | --20 104 | --20 104 | 1 989 | 1 989 | 0 | -18 115 | -18 115 | 46 536 | 46 536 | |
| Transfers between funds | -50 000 | -50 000 | -50 000 | -50 000 | 100 000 | 0 | 0 | |||
| Net movements in Funds after transfers | -70 104 | -70 104 | -48 011 | -48 011 | 100 000 | -118 115 | -118 115 | 46 536 | 46 536 | |
| RECONCILIATION OF FUNDS | ||||||||||
| Fund balance brought forward at 1 Sep 2023 | 144 413 | 144 413 | 65 228 | 65 228 | 0 | 209 641 | 209 641 | 163 105 | 163 105 | |
| Fund balance carried forward at 31 Aug 2024 | 74 309 | 74 309 | 17 217 | 17 217 | 100 000 | 191 526 | 191 526 | 209 641 | 209 641 |
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| General | Restricted | Total | Total | ||||
|---|---|---|---|---|---|---|---|
| Fund | Fund | 2023 | 2022 | ||||
| £ | £ | £ | £ | ||||
| Income and endowments | |||||||
| Donations | 27 306 | 470 | 27 776 | 19 603 | Note 5 | ||
| Bequests and legacies | 805 | 56 276 | 57 081 | 263 | |||
| Subscriptions | 10 051 | 0 | 10 051 | 9 885 | |||
| Gift Aid tax reclaimed | 4 999 | 28 | 5 027 | 4 752 | |||
| Grants received | 0 | 0 | 0 | 0 | Note 6 | ||
| Fundraising activities | 5 156 | 30 | 5 186 | 17 507 | |||
| Sales of goods | 784 | 0 | 784 | 771 | |||
| Other | 5 085 | 0 | 5 085 | 3 837 | Note 7 | ||
| Total income and endowments | 54 186 | 56 804 | 110 990 | 56 618 | |||
| Expenditure on charitable activities | |||||||
| Trading costs | 0 | 0 | 0 | 1 105 | |||
| Event costs | 2 652 | 0 | 2 652 | 2 551 | |||
| Fundraising costs | 703 | 0 | 703 | 1 251 | |||
| Staff training | 0 | 0 | 0 | 25 | |||
| Grants and bursaries | 3 412 | 0 | 3 412 | 4 260 | |||
| Research grants | 0 | 0 | 0 | 700 | |||
| Subscriptions to other organizations | 705 | 0 | 705 | 436 | |||
| Helpline costs | 98 | 0 | 98 | 81 | |||
| Salaries and wages | 29 055 | 0 | 29 055 | 26 380 | Note 8 | ||
| Social security and pensions | 605 | 0 | 605 | 564 | Note 8 | ||
| Travel and subsistence | 818 | 0 | 818 | 1 424 | |||
| Insurance | 913 | 0 | 913 | 878 | |||
| Telephone charges | 515 | 0 | 515 | 404 | |||
| Printing, postage, stationery etc. | 1 254 | 0 | 1 254 | 540 | |||
| Equipment purchases | 292 | 0 | 292 | 35 | |||
| Newsletter | 9 672 | 0 | 9 672 | 9 165 | |||
| Web site and publicity | 412 | 0 | 412 | 5 600 | |||
| ICT hardware | 971 | 0 | 0 | 971 | 0 | ||
| ICT software and management | 1 102 | 0 | 1 102 | 1 288 | |||
| Annual Conference and AGM | 9 078 | 0 | 9 078 | 3 734 | |||
| Governance costs | 2 713 | 0 | 2 713 | 1 782 | |||
| Other | 1 267 | 0 | 1 267 | 1 240 | |||
| Total expenditure | 66 237 | 0 | 66 237 | 63 443 | |||
| Net expenditure before gains on investments | -12 051 | 56 804 | 44 753 | -6 825 | |||
| Net gains on investments | 1 214 | 569 | 1 783 | 162 | |||
| NET INCOME | --10 837 | 57 373 | 46 536 | -6 663 | |||
| Transfers between funds | 0 | 0 | 0 | 0 | |||
| Net movements in Funds after transfers | -10 837 | 57 373 | 46 536 | -6 663 | |||
| RECONCILIATION OF FUNDS | |||||||
| Fund balance brought forward at 1 Sep 2022 | 155 250 | 7 855 | 163 105 | 169 768 | |||
| Fund balance carried forward at 31 Aug 2023 | 144 413 | 65 228 | 209 641 | 163 105 |
Page 17 of 21
| General | General | Research | Research | Projects | Total | Total | ||
|---|---|---|---|---|---|---|---|---|
| Balance Sheet as at 31 Aug 2024 | Fund | Fund | Fund | 2024 | 2023 | |||
| £ | £ | £ | £ | |||||
| Current Assets | ||||||||
| Stock in hand | 1 532 | 1 532 | 0 | 0 | 1 532 | 1 719 | Note 9 | |
| Debtors | 116 | 0 | 0 | 116 | 133 | Note 10 | ||
| Prepayments | 649 | 0 | 0 | 649 | 577 | Note 11 | ||
| Accrued income | 900 | 0 | 0 | 900 | 406 | Note 11 | ||
| Recoverable Gift Aid | 441 | 410 | 0 | 851 | 2 003 | |||
| Deposit Accounts | 69 616 | 69 616 | 15 641 | 15 641 | 100 000 | 185 257 | 204 962 | |
| Current Accounts | 2 232 | 2 232 | 1 166 | 1 166 | 0 | 3 398 | 1 636 | |
| Petty Cash | 350 | 0 | 0 | 350 | 350 | Note 12 | ||
| Total current assets | 75 836 | 75 836 | 17 217 | 17 217 | 100 000 | 193 053 | 211 786 | |
| Current Liabilities | ||||||||
| Creditors | 348 | 0 | 0 | 348 | 362 | Note 13 | ||
| Deferred income | 430 | 0 | 0 | 430 | 400 | Note 14 | ||
| Accrued expenses | 749 | 0 | 0 | 749 | 1 383 | Note 15 | ||
| Total current liabilities | 1 527 | 1 527 | 0 | 0 | 1 527 | 2 145 | ||
| Total net assets | 74 309 | 74 309 | 17 217 | 17 217 | 100 000 | 191 526 | 209 641 | |
| TOTAL FUNDS | 74 309 | 74 309 | 17 217 | 17 217 | 100 000 | 191 526 | 209 641 |
The financial statements were approved by the trustees on 18 September 2024
Signed
Alan Lane Hon. Treasurer 22 September 2024
Page 18 of 21
Notes forming part of the financial statements for the year ended 31 Aug 2024
1.
concern.
2. Income
as General Fund unless they are specifically designated by the donor for the Research Fund.
3. Expenditure
Expenditure is recognised in the year to which it relates. Irrecoverable VAT is included in the relevant heading.
4. Funds
The General Fund comprises funds that the trustees are free to use in accordance with the charitable objects.
The Research Fund was opened in 1995 and is specifically intended to provide for financial grants to be given to research projects in the UK concerned with the study of Behçet’s Disease.
The Projects Fund was opened in 2024 and is intended to hold funds that have been earmarked by Trustees for major projects, but
Analysis of net assets between funds
| Unrestricted | Restricted | Project | Total | |
|---|---|---|---|---|
| Funds | Funds | Funds | ||
| £ | £ | £ | £ | |
| Net current assets | 74 309 | 17 217 | 100 000 | 191 526 |
| Total | 74 309 | 17 217 | 100 000 | 191 526 |
new research grants were awarded by the Trustees.
6. Grants received
7. Other income
8. Salary costs Year ending 31 August
| 8. Salary costs Year ending 31 August | ||
|---|---|---|
| 8. Salary costs Year ending 31 August | 2024 | 2023 |
| £ | £ | |
| Wages and salaries | 31 623 29 055 | 31 623 29 055 |
| National Insurance contributions | 0 | 0 O (after |
| Employer's pension contributions | 650 | 605 |
| 32 273 29 660 | 32 273 29 660 |
The average number of staff employed during the year was 2 persons ( 2023, 2 persons ). There are no employees earning above £60 000 ( 2023 none ).
Page 19 of 21
None of the trustees, nor any persons connected with them, has received any remunera�on during the year. Two trustees received expenses for travel and subsistence costs this year totalling £2777 ( 2022: £605 ).
9. Stock
Stock consists of purchased items intended for resale and is stated at the lower of cost and net realisable value.
10. Debtors
Dona�ons received via PayPal and via CAF Donate that had yet to be transferred to the Society’s bank account on 31 August.
11. Prepayments
Part of insurance premium paid in 2032/24 that relates to 2024/25 and payment in advance for other subscrip�ons.
12. Pe�y Cash
Expense floats held by Administrator and Assistant Administrator.
13. Creditors
General Fund: Sums owed to HMRC and to the Society’s pension provider in respect of August 2024 salaries.
14. Deferred Income
Advance subscrip�ons for 2024/25 received before 1 September 2024.
15. Accrued expenses
Staff expenses rela�ng to 2023/24 and provision for fees for independent examina�on of accounts
Page 20 of 21
INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF BEHÇET’S UK
2024 which are set out on pages 16 to 20.
Independent examiner's statement
-
the accounts do not accord with those records; or
-
the accounts do not comply with the applicable requirements concerning the form and content of
reached.
Caroline Webster FCA UHY Ross Brooke Suite I Windrush Court Abingdon OX14 1SY
Date: 14/10/2024
Page 21 of 21