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2023-03-31-accounts

TRUSTEES’ REPORT AND ACCOUNTS FOR THE YEAR ENDED 31[st] MARCH 2023

Bardet-Biedl Syndrome UK Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Contents

Administration Details …………………………………………………3 Bardet-Biedl Syndrome ……………………………………………….4 Vision, Mission, Values ……………………………………………….4 Structure, Governance and Management …………………………..4 Additional Governance ………………………………………………..6 Objectives and Activities ……………………………………….……..8 Report from the Chair of BBS UK ……………………………………9 Achievements and Performance …………………………………….10 Fundraising Review ……………………………………………..…....14 Treasurers Report……………………………………………………...17 Declaration ……………………………………………………….…….18 Accounts for year ended 31st March 2023 …………………………19 Independent Examiners Report …………………………….………..30

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Administration Details

Main Address: 43 Balton Way , Harwich , Essex , C012 4UP Web: www.bbsuk.org.uk Email: admin@bbsuk.org.uk

Registered Charity in England and Wales: 1181244

Bankers: Barclays Bank PLC

Independent Accounts Examiner: Amicus Accountancy Ltd

President: Professor Philip Beales BSc LMSSA MD FRCP

Board of Trustees:

Chair: Laura Dowswell Secretary: Dianne Hand Treasurer: Abbie Geeson Trustee: Liam Wilkie Trustee: Rachael Foley Trustee: Stefan Crocker Trustee: Dr Shehla Mohammed Trustee: Azrat Mirza Trustee: Chetan Meshram (co-opted November 2022) Trustee: Gareth Owens (co-opted February 2023) Trustee: Tazeem Abbas (co-opted February 2023)

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Bardet-Biedl Syndrome

Bardet-Biedl syndrome is a rare, recessively inherited disorder which affects approximately 1 in 100,000 babies born. Features of the Syndrome include Rod-Cone Dystrophy, an eye disorder, characterised by tunnel vision and night blindness, which often leads to blindness; obesity; renal abnormalities; developmental delay; speech and language difficulties; extra fingers and/or toes and learning difficulties.

Not all of the features are always present in those diagnosed as having BBS and each one can vary in severity and appearance. The variability in presentation and severity of the Syndrome together with the rarity of the condition (there are approximately 650 diagnosed individuals known to us in the UK) can mean a delayed diagnosis and lack of adequate local health care.

Vision, Mission, Values

Vision: Our unique experience, knowledge and understanding of Bardet-Biedl syndrome, will ensure that everyone who accesses our services is supported, connected and informed about BBS and empowered to achieve the best possible outcome.

Mission: We are committed to promoting positive health and wellbeing within the BBS community; to improving knowledge and understanding amongst those affected, the medical and educational professionals and the wider public; and to supporting research and raising awareness of Bardet-Biedl syndrome.

Values :

Structure, Governance and Management

Bardet-Biedl Syndrome UK (BBS UK), charity number 1181244 is a Charitable Incorporated Organisation (CIO) and was registered with the Charity Commission on the 18/12/2018. BBS UK is the only registered charity supporting people with Bardet-Biedl syndrome, their families and carers in the UK. The governing document of the Charity is a constitution. The CIO formally represents the incorporation of the unincorporated charity, Bardet-Biedl Syndrome UK (1027384), formerly known as Laurence-Moon-Bardet-Biedl Society and LMBBS which was established in 1993. The CIO is the successor body to the original Charity which was entered into the register of mergers on the 23/12/2020. The Board of Trustees is responsible for the governance of the Charity. The Charity now supports around

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

650 individuals living with BBS, their families and carers, and also the professionals supporting them across health, education and social care. Full membership of the Charity is open to any adult who has Bardet-Biedl syndrome and his/her family and any family with one or more affected children, including their grandparents and carers.

Trustees

Trustees are elected during the Annual General Meeting (AGM) of the Charity. Trustees serve three-year terms and a trustee who has served for two consecutive terms of three years each may not be re-appointed for a third consecutive term unless approved by members but may be reappointed after an interval of at least three years. The members or the Trustees may at any time decide to appoint a new trustee in place of a trustee who has retired, been removed or as an additional trustee.

New trustees are given an opportunity to observe a board meeting, meet with the Chair of the Board of Trustees and Operations Manager. They are supported with an induction process and are provided with the following:

The Honorary Officers of the Charity hold office for one year but are eligible for re-election annually. All trustees give their time freely and receive no remuneration or other benefits, however, reasonable incurred expenses are reimbursed as appropriate.

The Board seeks to be representative of the people with whom the Charity works and individual trustees have sufficient knowledge, both of trusteeship in general and of the Charity's activities, to enable them to carry out their role and to represent the Charity.

Trustees are expected to undertake training to ensure they remain up to date with information and procedures. Courses attended have focused on developing governance skills, and include safeguarding, GDPR, recruitment and equality, diversity and inclusion training. The Charity Trustees will make available to each new trustee: a copy of the constitution and any amendments made to it; and a copy of the CIO’s latest Trustees’ Annual Report and Statement of Accounts.

BBS Clinics NHS Contract

Bardet-Biedl Syndrome UK has a contract with NHS England to facilitate the specialist multi-disciplinary clinics, which take place in Great Ormond Street Hospital and St Thomas’ Hospital, London and Birmingham Children’s Hospital and Queen Elizabeth Hospital, Birmingham. The requirements of the contract with the National Specialised Commissioning Team include:

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

To achieve the above, information and support is provided to the patients and their families/carers before, during and after clinics. Accommodation is organised for patients when needed and assistance is given with travel arrangements. This service provision ensures patients, and their families are well informed about the syndrome and feel well supported to attend their clinic appointment. BBS UK has a presence at each clinic, offering emotional and practical support to patients and their families and ensuring they are aware of all relevant benefits and social support services. Post clinic, ongoing support and liaison services are available.

Additional Governance

Policies and Procedures

BBS UK has the following policies in place:

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Bardet-Biedl Syndrome UK Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

BBS UK has the following Information Security policies in place:

BBS UK has the following handbooks in place:

Additional quality assurances

BBS UK has Cyber Essentials Certification which is an official UK wide government-backed scheme that provides protection against the most common cyber threats and demonstrates our commitment to cyber security.

BBS UK has completed and published NHS Digital’s Data Security and Protection Toolkit, an online self-assessment tool that allows organisations to measure their performance against the National Data Guardian’s 10 data security standards and to provide assurance they are practising good data security and personal information handling.

BBS UK has achieved PIF TICK accreditation following a thorough application and assessment process. The PIF TICK is a mark of quality and demonstrates that our health information has been through a professional and robust production process.

Disclosure and Barring Service checks (DBS) are carried out prior to commencement of employment, trusteeship, and volunteering duties. DBS checks are carried out regularly in line with statutory requirements. Child Protection Training and Safeguarding Vulnerable Adults Training is undertaken by those working or volunteering with children, young people and/or vulnerable adults, their line managers and their governing board.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

How we look after and safeguard information

BBS UK aims to provide members and patients with the highest quality support and information and to do this we need to collect, process and store information.

BBS UK processes and stores information in accordance with:

BBS UK maintains compliance via:

For this reporting period, BBS UK reported no breaches in security and no ‘near misses’.

Objectives and Activities

BBS UK strives to bring together through our projects and services, support to our members. BBS UK Trustees have regard to the Charity Commission's public benefit guidance when exercising any powers or duties to which the guidance is relevant. The Trustees always ensure that the projects and services we undertake are in line with our charitable aims and objectives.

The main objectives of Bardet-Biedl Syndrome UK are:

  1. To preserve and protect the health and promote the welfare of persons affected by Bardet-Biedl syndrome and their families.

  2. To advance the education of the medical and educational professions and the general public on the subject of Bardet-Biedl syndrome and its implications for the family, and to promote research for the public benefit in all aspects of that subject and to publish the useful results.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

The main activities the charity undertakes in pursuance of its objectives for the public benefit are:

Report from the Chair of BBS UK

Laura Dowswell, Chair

Like many smaller charities, BBS UK has faced numerous challenges over the last two or three years, not only with the pandemic but also in the tough economic times we now find ourselves facing. The Board of Trustees and staff team have worked incredibly hard to meet those challenges which include not only to maintain the delivery of the Charity’s vital services, and to ensure that the Charity continues to be sustainable, but to develop our services to meet the increased needs of our community.

We have seen some positive changes and are delighted to welcome Natalie Braunton to the staff team in the role of Operations Assistant.

We’ve also recruited four new Trustees to the Board and welcome Azrat Mirza, Chetan Meshram, Gareth Owens and Tazeem Abbas who bring with them professional skills as well as lived experience of BBS.

The BBS UK Advice Service continues to provide high quality support with accessing local services across housing, social care, benefits, and education; the work that is being undertaken and the outcomes that are being achieved, continue to show that this is an essential core service and a primary funding focus for BBS UK.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

The Clinics Team have continued to provide excellent support to the service and to patients attending the face to face and telemedicine clinics.

There have been a number of team projects undertaken during the last year, including the IT Equipment Fund, our partnership with Slimming World, the Maypole Counselling Pilot Project and our newly formed Regional Group in Ireland. I was delighted to be invited to their first ever Information Day held in Belfast in May 2023. It was lovely meeting so many new families and seeing the support they were able to offer each other.

On behalf of the Board and personally, I would like to offer sincere thanks, firstly to the staff team who as always work so hard to support so many families, and also to my fellow trustees who freely and willingly give up their free time. Also, to all those who have continued to fundraise throughout and to those who have regularly contributed through the Friends scheme.

Team BBS UK is made up of trustees, staff, volunteers, members, supportive professionals, fundraisers, donors, campaigners, supporting charities and organisations, and that is how we have managed to continue our growth and provide the support and information services that our community needs: by continuing to work together and by developing new ways of working, in order to improve the lives of all those living with Bardet-Biedl syndrome.

Achievements and Performance

Tonia Hymers, Operations Manager

Introduction

In 2022, BBS UK published its three-year strategy following an extensive consultation process involving trustees, staff and the BBS community. Our three-year strategy sets out our vision, mission and values and establishes our aims and objectives for the period, which are:

  1. Improve communication with our service users

  2. Develop our support services and reduce isolation

  3. Empower our membership to achieve

  4. Strengthen governance and raise our profile

  5. Support research and understanding of BBS

Following, is an overview of progress made towards these targets: Improve communication with our service users

Database : It is important to us that we reach all members of our community in ways that are accessible and acceptable to them, in line with our data protection responsibilities and in support of this we have continued to develop our use of Charitylog (data management system) across all services. This has supported and improved internal and external communications and has improved the quality and accuracy of our data.

Social Media: We have increased our engagement on social media, in particular during the last quarter of the reporting period with a 45% increase in reach via Facebook:

847

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Newsletters : We have produced two bumper paper editions, also available in CD and Word. Looking ahead we are considering other ways of reaching our community including the introduction of e-newsletters.

Website management : The BBS UK website was largely unsupported, out of date and lacking accessibility and is now undergoing a rebuild. The website is essential to our communications with our service users and its development will support this target across the coming year.

Develop our support services and reduce isolation

This aspect of our work is of vital importance and following are some of the ways we have met our targets across the year:

Advice Service: Since its creation in 2021, demand for support from the BBS UK Advice Service has increased rapidly. This year has seen Rebecca and Shirin support 77 advice service users in a variety of areas including: navigating the increasingly complex social care system, education, housing, benefits, and future planning. They have completed 1044 contacts with both service users and external professionals to ensure that adults and children with BBS get the support that they are entitled to.

This year also saw the team complete their first social worker placement in partnership with London Metropolitan University by supporting a Year 2 student complete their 70-day placement as part of their degree in social work. They hope to complete another placement in the forthcoming year as it was such a positive experience for the team.

Looking forward, the team will continue to work in partnership with the clinics team to support adults and families the best way possible, in areas such as transition, social care, education and will continue to form positive working relationships with local authorities to ensure their professionals have knowledge and understanding of Bardet -Biedl syndrome.

Clinics Support Service: It has been a busy year for the clinics support team, logging 2666 actions/contacts for over 460 service users and providing support and facilitation services at approximately 55 clinics (virtual and face-to-face) across Birmingham and London. Amy, Angela, Laura and Shirin’s work is consistently highly regarded by our NHS colleagues and NHS England and they are regularly cited as being essential to the running of the BBS clinics service. Outcomes include:

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Patient evaluation data is also consistently high, with 99% of patients rating the information and support received as ‘Good’ or ‘Very Good’. Comments received include:

Conference 2022 : In September we returned to the Hilton Hotel, Northampton for our annual family conference, the first in-person event since 2019. The weekend was a huge success as reflected in the following figures:

Regional Group Ireland: We have established a regional group with our members in the Republic of Ireland and Northern Ireland with the aim of raising awareness and improving communications, information, and support. They have held two face-to-face meetings, one at Portlaoise in County Laoise and another in Belfast. Their feedback echoed what we have all felt which is how powerful it is to be in a room with people who understand exactly what you are going through. We are excited to continue working with this group and support their development which will benefit all those living with BBS across the Island of Ireland and in particular those who are newly diagnosed.

Counselling Pilot Project : We worked with The Maypole Project to provide counselling sessions for those struggling with social isolation. There is an ongoing need for this area of support and we are reviewing the outcomes of this project and considering how to take it forward.

IT Equipment Project : Our IT Equipment Project has continued to provide devices to those who have limited or no access to technology. Initially we support applicants to seek funding elsewhere and where this is unsuccessful, BBS UK will then fund and provide a computing device, which may be a laptop or tablet. This scheme has supported individuals to access education, medical appointments, and social opportunities.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Slimming World on Referral: We have been really impressed with the determination and outcomes of those who joined our Slimming World on Referral group. Slimming World have submitted an abstract outlining our collaboration to the British Dietetic Association’s annual ‘research symposium’ and included an article in their magazine for professionals. One of our members lost 5 stone and was voted ‘Woman of the Year’ by her fellow Slimming World members.

Empower our membership to achieve

Employment : In addition to the above projects, our Advice Team have started to look at the support that is available with gaining employment and are signposting and referring our service users as appropriate. We are following up these referrals and monitoring progress with the aim of seeking out the most appropriate schemes for potential collaboration and to better support our service users going forwards.

Health and Wellbeing : Those living with BBS are likely to experience difficulties maintaining a healthy weight and often struggle with their mental health and general wellbeing and therefore BBS UK has a responsibility to encourage a culture of positive health and wellbeing throughout its projects and services. During Conference 2022, we offered workshops with a dietitian and clinical psychologist and introduced our young people to the ‘Five Ways to Wellbeing’ which included a day at an outdoor activity centre and a session with British Blind Sports. Our main fundraising campaign has focused on being active, in whatever way suits the individual, with participants working together to achieve the goal of Carrying the Gene from John O Groats to Land’s End. In the coming year we aim to develop a resource about healthy eating and exercise for those with BBS and those who support them.

Strengthen governance and raise our profile

We have simplified our organisational structure, bringing our NHS contract within the Charity and have continued growing and developing our Board of Trustees, with a focus on filling gaps identified in a skills audit. The BBS UK Board is now 11 strong and includes professional experience and skills across management/leadership, finance, project management, contract management, education, medical/genetics, human resources, and marketing/media/PR. We have established Finance, Fundraising and HR sub-committees and executive responsibility roles for safeguarding, risk, data protection and health and safety.

We are in the process of launching a Service User Advisory Group to ensure BBS UK strategy and operations remain service-user focused. We have established a terms of reference document and are about to commence recruitment. We have also introduced a ‘Professionals Supporting BBS’ group, with the aim of bringing together a network of professionals who have the skills to assist BBS UK in supporting our community.

We have a representative on the board of the Ciliopathy Alliance (CA), BBS International (BBSI) and CRIBBS, the Clinical Registry Investigating Bardet-Biedl Syndrome in the US and have represented the Charity at two Queen Alexandra College’s Sight Villages, Retina UK Conference and Cilia Cologne.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Support research and understanding of BBS

We have supported Rhythm Pharmaceuticals with the dissemination of a research questionnaire and information seeking to understand the lived experience of hyperphagia and have provided letters of support for other relevant research proposals/applications.

We have engaged with NICE in support of the appraisal process for Rhythm’s application for Setmelanotide and completed a submission ahead of the appraisal due in July 2023.

Our presence on the boards of BBSI and the CA ensure we are aware of current research developments and are best placed to support and ensure our community is involved where appropriate.

Summary

This summary of our achievements and performance over the past year demonstrates our commitment to achieving the aims set out in our three-year strategic plan, towards which we have made good progress. We remain focused on continuous improvement and sustainability to ensure we can continue to meet the needs of our community into the future. Our deepest gratitude to all staff, trustees and volunteers for their exceptional work. It is through the collective efforts of this exceptional team that we are able to provide the services and projects that we do and why we are able to move forward with confidence and optimism.

Fundraising Review

Tonia Hymers, Operations Manager

Introduction

This reporting period has been a particularly challenging time for fundraising, not just for BBS UK but across the whole fundraising landscape. We marked two years since the start of the pandemic and have seen unprecedented challenges, not just with the continuing impact of living with Covid-19 but also the cost-of-living crisis that continues to affect us all. Across the fundraising sector, events, activities and giving in general have been massively impacted resulting in an inevitable drop in income, however the BBS community came through and together they fundraised/donated a fantastic £56,265 which was 87% of our community fundraising target.

Fundraising Goals and Strategy

A key aim across the year was to diversify income and develop a fundraising strategy to support BBS UK’s three-year strategy and although we have moved significantly towards this goal, progress has been hampered by the loss of key staff.

Our aim is to gain multiple-year funding to secure and grow our Advice Service and this remains an ongoing target. A focus for the coming year is to work with industry experts to develop our skills and knowledge with the aim of improving our internal processes and the quality of our applications, to give us the best possible chance of securing long-term funding.

Income diversity and strategy development remain ongoing targets, to include a digital fundraising and communications strategy alongside the ongoing development of the Charity’s general fundraising function.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Fundraising Activities

Our community has once again walked, ran, cycled, knitted, baked, held quizzes and much more to raise funds for BBS UK. They are all BBS heroes, and our heartfelt thanks go to each and every one of them. The following three are this year’s biggest fundraisers:

Cilia Cyclists : In September, a team of cyclists from the UK and Germany undertook an epic cycle ride to raise funds and awareness. Professor Helen May-Simera and her team of BBS researchers and members of BBS UK covered approximately 420 miles and 3 countries in five days: from Mainz University to the BBS UK Conference in Northampton, arriving on the Friday evening. Tim Ogden, president of the US BBS group joined the team for the UK leg of the trip; together the team raised a fantastic £5,000.

Marathon Runner : Tony Francis ran the Richmond Half Marathon for BBS UK on 9th October in support of his sister, Laura, and raised an incredible £14,500.

Carry the Gene : This BBS UK campaign aims to bring the BBS community together to ‘Carry the Gene’ from John O’Groats to Lands’ End, via Northern Ireland, Ireland and Wales, with a focus on activity and exercise, and a target of raising £10K. Much of the preparation for this campaign was completed during the reporting period however the start was delayed until April 2023. The campaign is expected to exceed all expectations in terms of participation and fundraising.

Friends of BBS UK : We have continued to gain new ‘Friends of BBS UK’, bringing in a total of £9,472 across the year. This known, regular income enables BBS UK to provide its core services which are a lifeline for our community, and the promotion of this scheme is an ongoing focus for the coming months and years.

Conference Weekend : Our Conference Weekend provides an invaluable opportunity for us to connect with our community and demonstrate the value and impact of the Charity. We gave presentations about the past, present and future of BBS UK, an update of the Charity’s services, an overview of our Advice Service and a fundraising round-up, launching the Carry the Gene campaign. Our community responded, generating record fundraising income across the weekend.

Donor and Supporter Engagement

A key aspect of BBS UK’s three-year strategy is to improve our communications with our community, and this has extended to donor and supporter engagement. As mentioned elsewhere in this report, we have increased our engagement on social media and are now registered as a non-profit on Meta, which gives us fundraising tools, including a ‘Donate’ button on our Facebook profile and the ability to create charity fundraisers.

Donor stewardship is important to us, and we ensure that where possible, all donors and fundraisers receive a letter of thanks and a certificate where appropriate. At the end of the calendar year, an email of thanks was sent to everyone who had supported our work in some way, listing the ways in which we had put their money and efforts to good use. We do however acknowledge that we need to further develop the ways in which we engage with our supporters and will consider additional tools and strategies in the year ahead.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Fundraising Income and Expenditure

As previously mentioned, this has been a challenging time for fundraising which is reflected in the figures below. Big local fundraising events were down, we had no runners in local or national marathons and were unable to secure funding from Trusts/Foundations.

2022-2023 Donations/Fundraising £39,555 Total Regular Givers £ 9,472 Gift Aid £ 7,238 Trusts/Foundations £ Grants/Sponsorship (Pharma) £ 7,000 Total £63,265

Fundraising costs were minimal at £1,469

Pharmaceutical Industry : BBS UK believes it is important to maintain cooperative relationships with all industry partners and stakeholders in BBS, including the pharmaceutical industry. Such relationships are conducted in an open, transparent, and ethical way, in line with the strict guidelines provided by the Association of British Pharmaceutical Industry (ABPI) and guided by robust internal policies.

Our engagement facilitates our community’s participation in research, surveys and focus groups and we contribute to regulatory and reimbursement processes to evidence the impact of the many aspects of Bardet-Biedl syndrome.

Pharmaceutical companies support the work that we do by providing grants and/or sponsorship for projects or services that benefit our community. In 2022-23 we were grateful to receive the following support:

Rhythm Pharmaceuticals: £7,000 towards our Annual Family Conference

Trusts and Foundations : BBS UK received no grants in the reporting year.

Impact and Future Plans

The generous support we have received from our donors and fundraisers has enabled BBS UK to maintain its core programmes and services which have had a significant impact on our beneficiaries as outlined elsewhere in this report. However, the drop in income has meant that we have been unable to develop or establish plans for long-term growth. This particularly impacts on our Advice Service provision, which often must implement a waiting list, and our aim is to secure funding to develop this provision going forwards.

Our Heartfelt Thanks

BBS UK has been called ‘small but mighty’ and that includes our community of fundraisers and donors; the Cilia Cyclists and Carry the Gene campaign have shown what can be achieved by a few individuals with big ambitions and our heartfelt thanks go to each and every person who has raised funds or donated to BBS UK this year. A big shout-out goes to the Wilkie family and their incredible supporters for inspiring and generating an impressive campaign for 2023.

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Special thanks go to the Sloane family who have been champion fundraisers for BBS UK for many years, holding quiz nights and afternoon teas; and to the Knitting Nannies who create beautiful, knitted toys all year round to sell and raffle for the Charity. We are seeing many more champion fundraisers emerging and look forward to continuing to work with them in the coming months and years.

This report shows the impact of the work of BBS UK and demonstrates the need for growth in service provision – this is only possible with the support of our donors and fundraisers and we encourage everyone to think about what they could do to help us to make a - difference, for more information go to www.bbsuk.org.uk/fundraise bbs/

Treasurer’s Report

Abbie Geeson, Treasurer

BBS UK’s financial period runs from the 1[st ] April 2022 – 31[st] March 2023. The financial accounts are prepared on the accrual basis. It should be noted in the previous financial year BBS UK extended its financial year to incorporate 1[st] January 2021 – 31[st] March 22 and the financial statements reflected a 15-month period and were prepared on a receipts and payments basis.

On the 1[st of] April 2022 BBS UK took over the NHS Specialised Commissioned Services, third sector contract to provide the BBS Clinic Support Service, which was previously held by its now, dormant subsidiary company BBS UK Clinics Ltd, this meant an increase to income during the financial year. During the year the charity experienced the loss of two core key personnel. This impacted on both income generation of key grant funding and on project delivery. In January 2023 two new core employees were recruited and as such we expect to meet our budget outcomes next financial year.

The total Charity funds as of the 31[st of] March 2023 was £165,046 (21-22 £172,406). The General fund had a surplus of £30,465, transfers of £22,068 were made to other funds and the General fund stands at £129,600 (21-22 £121,203).

The Trustees made transfers from the General fund to the following designated funds:

The Trustees provided support of £955 from the Chris Humphreys Memorial Fund and £947 from the IT Equipment Fund. Further designated expenditure was £19,968 for the 2022 Annual Family Weekend and Conference and £5,955 for the Advice Service. The designated fund stands at £32,368 (21-22 £38,125).

The restricted fund stands at £3,078 (21-22 £13,078).

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Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Reserves Policy and Going Concern

Trustees regularly review the budget and the level of reserves, which are monitored monthly and reported at the quarterly board of trustee meetings to ensure that the appropriate levels are maintained considering the main risks to the organisation and future developments. Trustees have agreed unrestricted free reserves should be sufficient to cover six months expenditure.

The following designated reserves are set aside at year-end as follows:

The remaining reserves of £129,600 are held in the General fund as free reserves and represent six months of expenditure.

The trustees have reviewed the circumstances of the Charity and consider that adequate resources continue to be available to fund its activities for the foreseeable future. The trustees are of the view that the charity is a going concern.

Management of risk

The Trustees have identified that the main risks to the charity are:

Declaration

The Trustees approve this annual report and accounts.

Signed on behalf of the Board of Trustees:

L Dowswell

Laura Dowswell Position: Chair Date: 28/07/2023

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Bardet-Biedl Syndrome UK Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Accounts for year ended 31[st] March 2023

BARDET-BIEDL SYNDROME UK BARDET-BIEDL SYNDROME UK BARDET-BIEDL SYNDROME UK Charity
No		 1181244 CC17a
Annual accounts for the period
Period
start date		 1-Apr-22 To Period
end date		 31-Mar-23
**Section AStatement of financial activities **
Recommended categories by
activity		 Unrestricted
funds
Restricted
funds		 Endowm
ent funds
Total funds		 Prior
year
funds
£
£		 £
£		 £
Incoming resources (Note3)
Income and endowments from:
Donations and legacies 56,265
-
-		 56,265
101,615
Charitable activities 169,357
-
-		 169,357
Other trading activities 3,311
-
-		 3,311
448
Investments 13,499
-		 13,499
50,420
Other 349 -
-		 349 2,081
Total 242,781
-
-		 242,781
154,564
Resources expended (Note
5)
Expenditure on:
Raising funds 3,470
-
-		 3,470
1,102
Charitable activities 236,671
10,000		 - 246,671
92,437
Total 240,141
10,000
-		 250,141
93,539
Net income/(expenditure) before
investment gains/(losses)		 2,640
-10,000
-		 -7,360
61,025
Net gains/(losses) on
investments		 - -
-		 -
-
Net income/(expenditure) 2,640
- 10,000
-		 - 7,360
61,025
Net movement in funds 2,640
-10,000
-		 -7,360
61,025
Reconciliation of funds:
Total funds brought forward 159,328 13,078 -
172,406		 111,381
Total funds carried forward 161,968 3,078 -
165,046		 172,406

Page 19 of 31

Bardet-Biedl Syndrome UK Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Section B Balance sheet

Unrestricted
funds		 Restricted
funds		 Endowment
funds		 Total this
year		 Total last
year
£ £ £ £ £
Fixed assets
Tangible assets (Note 10) 1,145
-		 - 1,145 -
Total fixed assets 1,145 - - 1,145 -
Current assets
Debtors (Note 11) 34,378
-		 - 34,378 -
Cash at bank and in hand (Note 12) 136,483 3,078 - 139,561 172,406
Total current assets 170,861
3,078		 - 173,939 172,406
Creditors: amounts falling due within
one year (Note 13)		 10,038
-		 - 10,038 -
Net current assets/(liabilities) 160,823 3,078 - 163,901 172,406
Total assets less current liabilities 161,968 3,078 - 165,046 172,406
Total net assets or liabilities 161,968 3,078 - 165,046 172,406
Funds of the Charity
Restricted income funds (Note 14) - 3,078 - 3,078 13,078
Unrestricted funds (Note 15) 161,968
-		 - 161,968 159,328
Total funds 161,968 3,078 - 165,046 172,406
Signed by one or two trustees on behalf
of all the trustees		 Signature Print Name Date of
approval
A. Geeson Abbie Geeson 28/07/23

Page 20 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Section C Notes to the accounts

Note 1: Basis of Preparation

1.1 Basis of accounting

These accounts have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note(s) to these accounts. The accounts have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and with the Charities Act. The charity constitutes a public benefit entity as defined by FRS 102.

1.2 Going concern

There are no material uncertainties about the charity's ability to continue.

1.3 Change of accounting policy

The accounts present a true and fair view and the accounting policies adopted are those outlined in note 2.

1.4 Changes to accounting estimates

No changes to accounting estimates have occurred in the reporting period (3.46 FRS 102 SORP).

1.5 Material prior year errors

No material prior year error have been identified in the reporting period (3.47 FRS 102 SORP).

1.6 Fund accounting

1.7 Disclosure exemptions

Under charities SORP (FRS102) the Charity is classes as a small charity and has therefore taken the exemption from the requirement to prepare a cashflow statement.

Note 2: Accounting Policies

2.2 Income

Page 21 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

2.3 Expenditure and Liabilities

2.4 Assets

Page 22 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Note 3: Analysis of income


Analysis		 Unrestricted
funds
Restricted
funds		 Unrestricted
funds
Restricted
funds		 Endowment
funds
Total
funds		 Endowment
funds
Total
funds		 Prior
year
£
£		 £
£		 £
Donations
and
legacies:		 Donations and gifts 39,555
-		 - 39,555
58,038
Gift Aid 7,238
-		 - 7,238
2,096
Regular Giving 9,472
-		 - 9,472
9,877
General grants provided by
government/other charities		 - - - - 31,604
Total 56,265
-
-
56,265
101,615
Charitable
activities:		 Event Funding 7,000
-		 - 7,000
-
NHS - Commissioned
Services		 162,357
-		 - 162,357
-
Total 169,357
-
-
169,357
-
Other
trading
activities:		 FundraisingProceeds 2,207
-		 - 2,207
-
Sale of Merchandise 1,104
-		 - 1,104
448
Total 3,311
-		 - 3,311
448
Income from
investments		 Interest income 123
-		 - 123
8
Dividend income 13,376
-		 - 13,376
50,412
Total 13,499
-		 - 13,499
50,420
Other: Other 349
-		 - 349
2,081
Total 349
-		 - 349
2,081
Total Income 242,781
-
-
242,781
154,564
Total Income
242,781		 Total Income
242,781
-
-
242,781
154,564
-
242,781
154,564
Note 4: Analysis of receipts of government grants
Description This year Last year

£
£
Government
grant 1		 HMRC JRS - 1,604
Total - 1,604

Note 5: Analysis of expenditure

Note 5: Analysis of expenditure
This year Last year
Analysis Unrestricted
funds		 Restricted
funds		 Total
funds		 Unrestricted
funds		 Restricted
funds		 Total
funds
Expenditure on raising funds: £ £
Incurred seeking donations 1,268
-
1,268
1,102		 -
1,102
Advertising, marketing, direct mail
and publicity		 201
-
201
-		 -
-
Other trading activities 2,001
-
2,001
-		 - -
Total expenditure on raising
funds		 3,470
-
3,470
1,102		 -
1,102

Page 23 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Expenditure on charitable activities:

Advice Service 11,256
10,000
21,256
11,870
10,438
22,308
NHS - Commissioned Services 149,314
-
149,314
-
-
-
Annual Family Weekend and
Conference		 19,968
-
19,968
1,381
-
1,381
Chris Humphreys Memorial Fund 955
-
955
-
-
-
Information Support 4,034
-
4,034
7,776
-
7,776
IT Equipment Fund 947
-
947
2,830
-
2,830
Regional Groups 1,565
-
1,565
-
-
-
Wellbeing Support Service 3,000
-
3,000
10,000
-
10,000
Jeans 4 Genes -
-
-
-
1,422
1,422
Breaking Down Barriers -
-
-
-
1,804
1,804
Support
Costs
(Note 6)		 45,632
-
45,632
44,916
-		 44,916
Total expenditure on charitable
activities		 236,671
10,000
246,671
78,773
13,664
92,437
Other
- - - - - -
Total other expenditure - - - - - -

TOTAL EXPENDITURE		 240,141
10,000
250,141
79,875		 13,664
93,539

Analysis of expenditure on charitable activities:

This year Last year
Activity or programme Activities
undertaken
directly		 Support
Costs		 Total
this year		 Activities
undertaken
directly		 Support
Costs		 Total last
year
£ £ £ £ £ £
Advice Service 21,256
-		 21,256
22,308
-		 22,308
NHS-Commissioned Services 149,314
-		 149,314
-		 - -
Annual Family Weekend &
Conference		 19,968
-
19,968
1,381
-		 1,381
Chris Humphreys Memorial Fund 955
-		 955 - -
Information Support 4,034
-		 4,034
7,776
-		 7,776
IT Equipment Fund 947
-		 947
2,830
-		 2,830
Regional Groups 1,565
-		 1,565 - -
Wellbeing Support Service 3,000
-		 3,000
10,000
-		 10,000
Jeans 4 Genes - - - 1,422
-		 1,422
Breaking Down Barriers - - - 1,804
-		 1,804
Support Costs(note 6) - 45,632
45,632
-		 44,916 44,916

Total		 201,039
45,632
246,671
47,521
44,916		 92,437

Page 24 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Note 6: Support Costs

Support cost Support Costs This year Last Year
£ £ £
Accountancy Fees 3,479 3,479 1,002
IT support 2,169
2,169
-
Database 650
650
-
Exhibition Fees 300
300
-
Finance Fees 5,814
5,814
3,740
Governance 767
767
704
Insurance 365
365
709
Postage,Stationary,Advertising 1,795
1,795
1,509
Staff costs 26,990
26,990
32,653
Subscriptions 793
793
2,816
Sundry 347
347
920
Telephone 745
745
-
Travel 163
163
-
Website 416
416
863
Partial Exemption VAT disallowed 838
838
-
Other - - -
Total 45,632
45,632
44,916

Note 7: Details of certain items of expenditure

Note 7: Details of certain items of expenditure

Fees for examination of the accounts
This year Last year

£
£
Independent examiner’s fees - -
Assurance services other than audit or independent examination - -
Tax advisory fees - -

Other fees (for example: financial advice, consultancy, accountancy services)
paid to the independent examiner		 3,479
1,002

Note 8: Paid employees

8.1 Staff Costs 8.1 Staff Costs
This year Last year

£
£
Salaries and wages 155,017 53,696
Social security costs 13,625 1,099
Pension costs (defined contribution scheme) 7,368 1,098
Other employee benefits - -

Total staff costs		 176,010 55,893
No employees received employee benefits (excluding employer pension costs) for
the reporting period of more than £60,000
8.2 Average head count in the year This year Last year

Number
Number
The parts of the charity in which the employees work -part
time basis.		 Charitable Activities 10 3
Total 10 3

Page 25 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Note 9: Defined contribution pension scheme or defined benefit scheme accounted for as a defined contribution scheme

Amount of contributions recognised in the SOFA as an expense

This year Last year
£ £
7,368
1,098

Note 10: Tangible fixed assets

10.1 Cost or valuation

Fixtures, fittings
and equipment		 Total
£ £
At the beginning of the year - -
Additions 1,145
1,145
Revaluations - -
Disposals - -
Transfers* - -
At end of the year 1,145
1,145
10.2 Depreciation and impairments
**BasisSL or RB(Straight Line or ReducingBalance) SL or RB SL or RB
** Rate
At beginning of the year - -
Disposals - -
Depreciation - -
Impairment - -
Transfers* - -
At end of the year - -
10.3 Net book value
Net book value at the beginning ofthe year -
-
Net book value at the end of the year 1,145 1,145

Note 11: Debtors and prepayments

Analysis of debtors This year Last year
£ £
Trade debtors 32,893 -
Prepayments and accrued income 1,485 -
Total 34,378 -

Note 12: Cash at bank and in hand

Cash at bank and on hand

Total This year
£		 Last year
£
139,561 172,406
139,561 172,406

Page 26 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Note 13: Creditors and accruals

Analysis of creditors

Analysis of creditors
Amounts falling due within one
year		 Amounts falling due after more
than one year
This year Last year This year Last year

£
£
£
£
Trade creditors 2,535 - - -
Taxation and social security 7,503 - - -
Total 10,038 - - -

Note 14: Charity funds

Details of material funds held and movements - Restricted Funds

Fund names At 1st April
2022
£		 Income
£		 Expenditure
£		 Transfers
£		 At 31st
March 2023
£
Advice Service 10,000 - (10,000) - -
Jeans 4 Genes 3,078 - - - 3,078
Total Funds 13,078 - (10,000) - 3,078
Fund names At 1st
January
2021
£		 Income
£		 Expenditure
£		 Transfers
£		 At 31st
March 2022
£
Advice Service - 10,000 - - 10,000
Pears 10,000 (10,438) 438 -
Jeans 4 Genes 4,500
-		 -1,422
-		 3,078
Smaller restricted grants 2,242
-		 (1,804) (438) -
Total Funds 6,742
20,000		 (13,664) - 13,078

Advice Service

Restricted donation set aside to support the development and growth of this new integral BBS service.

Pears

Funding our Advice service support.

Jeans 4 Genes

Funding to facilitate our transition work with Young People.

Page 27 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Note 15: Charity funds

Details of material funds held and movements – Unrestricted funds

Fund names At 1st April
2022		 Income Expenditure Transfers At 31st
March 2023
£ £ £ £ £
General Funds 121,203
242,781
(212,316)		 (22,068) 129,600
Chris Humphreys Memorial Fund 955
-		 (955) 3,000
3,000

Annual Family Weekend &
Conference		 24,045
-		 (19,968) 20,923
25,000
IT Equipment Fund 7,170
-		 (947) (3,000) 3,223
Advice Service 5,955
-		 (5,955) - -
Fixed Assets - - - 1,145
1,145
Total Funds 159,328 242,781
(240,141)		 - 161,968
Fund names At 1st
January
2021		 Income Expenditure Transfers At 31st
March 2022
£ £ £ £ £
General Funds 83,683
134,564
(78,493)		 (18,551) 121,203
Chris Humphreys Memorial Fund 955
-		 - - 955

Annual Family Weekend &
Conference		 20,000
-		 (1,381) 5,426
24,045
IT Equipment Fund - - - 7,170
7,170
Advice Service - - - 5,955
5,955
Total Funds 104,638 134,564
(79,874)		 - 159,328

General Funds

General funds are donations and other incoming resources receivable or generated for the objects of the charity without a specific purpose and which the charity may use for its own purpose at its discretion.

Chris Humphreys Memorial Fund This subsidy fund was set up in 2020 to support newly diagnosed individuals and their families to access our events.

Annual Family weekend & Conference

This is committed future expenditure. The weekend brings together over 200 diagnosed individuals and their families.

IT Equipment Scheme

This fund was set up in 2021 in response to an increasing need for people with BBS to access services through means of digital technology based upon an assessment of need.

Advice Service

Amount set aside to support the development and growth of this new integral BBS service.

Fixed Assets

Fixed Assets which cannot be used to fund expenditure without being sold

Page 28 of 31

Bardet-Biedl Syndrome UK

Report of the Trustees and Statement of Financial Activities for the year ended 31[st] March 2023.

Note 16: Transactions with trustees and related parties

16.1 Trustee remuneration and benefits

This year none of the trustees have been paid any remuneration or received any other benefits from an employment with their charity or a related entity (2022: none)

16.2 Trustees' expenses

16.2 Trustees' expenses
Type of expenses reimbursed This year Last year
£ £
Travel 438
-
Other (please specify): - -
TOTAL 438 -
Please provide the number of trustees
reimbursed for expenses or who had
expenses paid by the charity
4

16.3 Transaction(s) with related parties

This year there have been no related party transactions in the reporting period (2022: none)

Page 29 of 31

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Bardet-Biedl Syndrome UK Report of the Truslees and Statement of Financial Activities for the year ended 31, March 2023. Give h•1• bri•f (l•t4i1s 91 ry tims ihai th discloj IER O¢tober 2018 Page 31 of 31