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Annual
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Registered charity no. 288260 (Scotland SCO39732)
Annual Report and financial statement 2023/24
## About the Haemophilia Society
## **We are the only UK-wide charity for everyone affected by a genetic bleeding disorder, and our charity is here for you.**
At the Haemophilia Society (THS) we want to empower everyone affected by a genetic bleeding disorder to live life to the full, whatever your stage in life.
One in 2,000 men, women and children in the UK have a diagnosed bleeding disorder, which are a group of conditions, including haemophilia and von Willebrand disorder, that result when the blood cannot clot properly.
As many as a third of bleeding disorder diagnoses have no known family history and can be the result of a random gene mutation. This means a bleeding disorder diagnosis can come completely out of the blue.
THS brings together people with bleeding disorders and their families to share experiences and understand more about how to live well with a bleeding disorder. Together, we can all make a difference.
## Contents
- **3 Welcome from our Chair**
- **4 Our work in numbers**
- **5 Who we are**
- **6 What we do**
- **14 How we manage your money**
- **15 Fundraising and partnerships**
- **17 A big thank you**
- **18 Our governance**
- **20 Trustees’ report 24 Independent auditor’s report 28 Statement of financial activities (including income and expenditure account)**
- **29 Balance sheet 30 Statement of cash flows 31 Notes to the financial statements**
- **18 Administration & legal details**
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Annual Report and financial statement 2022/23
## Welcome
Like every small charity, the need to find diverse and sustainable funding sources has been a top priority this year in our quest to maintain and expand the vital services we provide for everyone with a bleeding disorder in the UK.
While our focus must be on the needs of our members, we have had to address the increasingly difficult fundraising landscape that is significantly impacting the charity sector. We continue to be agile and resourceful in looking at new ways of working to ensure efficiency and maximise the effectiveness of our small team.
The bleeding disorders community has evolved significantly in recent years with far more awareness about less well-known conditions. I’m proud to say that we have been inspired by our trustees to do more to ensure that the diverse needs of everyone with a bleeding disorder are represented by our charity. This year we’ve set up new von Willebrand disorder (VWD) and Rare and Bleeding Disorder of Unknown Cause Working Groups. These groups will guide our work and ensure that we are hearing directly from the people we are trusted to support.
Our popular regular events continued this year with our Newly Diagnosed Weekend in Bolton, our Haemfest camping weekend in Derbyshire and Talking Red Live in Leicester, which focuses on the needs of women and girls with a bleeding disorder. Our annual Youth Camp for children aged nine to 15 with a bleeding disorder and their siblings was an incredible week of learning and growth. I know many adults still talk about their own experiences at Youth Camp, particularly learning how to administer factor
treatment and the independence they gained. It truly is a lifechanging experience.
We have spent a huge amount of time and energy this year thumping on the door of government, urging it to honour the recommendations of the Infected Blood Inquiry’s Second Interim Report which called for compensation to be paid as soon as possible to everyone infected and affected by the contaminated blood scandal. Our
community has suffered enough and this on-going delay, as we wait for the inquiry for publish its final recommendations, has been extremely damaging.
For those of you who have not been directly impacted by the inquiry, I would like to say that our work has also been for you. Our dedication to the inquiry has been to ensure that our community never endures such a scandal again. Hopefully the inquiry’s greatest legacy will be to provide a safe treatment landscape for us all for the future.
Finally, a personal note if I may. After nine years on the board and six years as chair, this will be my last annual report before I step down as your volunteerin-chief in November 2024. It has been the greatest privilege of my life to lead such an incredible, passionate and inspiring organisation. Whilst I appreciate that much my time will be remembered for the Infected Blood Inquiry, an incredible amount of progress has been made in advancing treatment and care for all bleeding disorders. That is down to the selflessness of the staff, trustees and our wider community. I couldn’t have wished to be supported by a more incredible team who have challenged and inspired me to lead us to be the best we can be.
Clive Smith Chair
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Annual Report and financial statement 2023/24
Annual Report and financial statement 2023/24
## Impact Statistics
members **5,085**
**15,000** followers on social media
booklets **3,033** sent out
**150,708**
**3,624** items bought from our online shop
**12,439** video views
**5.7%**
**363** people supported through our face-to-face events
in-person events held in four **FIVE** locations across the UK
## Who we are
**We exist to support you, and everybody affected by a genetic bleeding disorder in the UK, to enable you to live life well. We are both a charity and a member organisation, founded over 70 years ago.**
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Professor Pratima
Chowdary
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‘Exceptional care for haemophilia and bleeding disorders hinges on empowered patient voices and active advocacy. With monumental changes upon us, there’s no better moment than now for a strong haemophilia society to champion the patient’s voice and perspective.’
Professor Pratima Chowdary, Chair of the UKHCDO, the haemophilia doctors’ organisation.
## How we give support
**The Haemophilia Society supports the bleeding disorder community by:**
- **Organising events** which share expert knowledge
- and bring together people with similar experiences. Providing free in-depth and **unique publications** . From starting school to the challenges of ageing with a bleeding disorder, we publish nine different booklets offering support and information, many of which are offered in other languages including Arabic, Polish, Urdu, Welsh and Bengali. We also produce eight free, **downloadable factsheets** on everything from applying for benefits to how to prepare for a virtual doctor’s consultation.
- **Listening** to what you, our members, need. We
- regularly invite feedback and survey our membership to find out what is most important to our community. We also invite members to join working groups to steer our strategy and activity.
Members are at the heart of our work at the Haemophilia Society. Everyone’s experiences are different; sometimes the complexity and severity of the bleeding disorder means having to adapt to the day-today challenges. But with access to the right education and support, everyone can have the opportunity to better manage and take control of their lives – making it the best it can be.
- **Sharing** the latest news about developments in treatment, our work or anything else relevant to our community via social media, email and in our Community Matters members’ magazine.
- **Campaigning.** Together with you, our members, we raise awareness about bleeding disorders and lobby government, the NHS and clinicians for the best possible care and equal access to effective treatment. We also campaign in support of our many members who were infected and affected by the contaminated blood scandal.
Today we have 5,098 members, and a very active community on our social media channels. Our posts have a reach of more than 700,000 people.
Membership of the Haemophilia Society is free, and so are all the events and services that we provide for our members. This is only possible thanks to the generosity of all our amazing supporters. Thank you!
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Annual Report and financial statement 2023/24
## What we do
## Youth Support **Ensuring that our young members are welcomed, supported and empowered to manage their bleeding disorder is a central part of our work.**
and initiatives are relevant, inclusive and responsive to the needs of young people within our community. Board members will also continue to mentor younger Youth Ambassadors as well as our youth community.
‘I’m now part of a community where my bleeding disorder is seen as normal. It’s great to chat about these topics and connect with others who can relate to my story or whose stories I can relate to.’ Emily, new THS Youth Ambassador
This year we had two recruitment events for Youth Ambassadors which offered our younger members the chance to meet the team and find out more about what’s involved in the role. As a result of the events we have welcomed six new Youth Ambassadors
Three senior members of the Youth Board, Ross Bennett and brothers Alex and Josh Taylor-Rose, who all have severe haemophilia, took part in a video project showing their successful completion of the Yorkshire Three Peaks challenge. The video, which was supported by Sobi and CSL Behring, highlighted the mental and physical challenges of taking on the trek and was designed to encourage others with a bleeding disorder to set themselves an activity outside their comfort zone.
We have a strong Youth Ambassador programme, dating back to 2015, which is open to members aged 18-30. Our Youth Ambassadors act as mentors to our younger members, offering advice and reassurance about the reality of living with a bleeding disorder. They also attend our events to talk about their lived experience. Many people, particularly parents of newly diagnosed children, find it very reassuring to hear about the full lives these approachable and positive young people lead.
Our annual Youth Camp, which is free to members, took place in Derbyshire in July 2023 and was attended by 50 young people aged nine to 15 who either have a bleeding disorder or have a sibling with a bleeding disorder. Supporting the families of people with a bleeding disorder is an essential part of our work, and a recognition of the impact that living with a bleeding disorder has on parents, grandparents and siblings.
Our Youth Ambassadors also regularly attend global conferences to share their experiences, helping them to build their skills to become advocates for themselves and our community.
We also have a Youth Board, made up of six senior Youth Ambassadors, all with a bleeding disorder, which provides an opportunity to take more responsibility within the charity. The board ensures that our strategies
The camps, which could not be run without the support of our volunteers, including clinicians such as specialist paediatric nurses and physiotherapists, allow our young people freedom and independence in a safe environment. Here they can try activities such as climbing and a high ropes course which builds their confidence. They also meet others who have been through similar experiences, often resulting in longlasting friendships. For many of our campers this is the first opportunity they’ve had to stay away from home independently, and for parents this gives them a rare break.
‘Attending Youth Camp as a child helped me realise that I could have a normal life as well as lots of fun. It’s great to be back as an adult volunteer, helping the next generation of kids with a bleeding disorder to get involved and enjoy themselves.’ 6 Sam, Youth Camp volunteer who has moderate haemophilia A
As always, our feedback was excellent from Youth Camp 2023, from both the young people themselves and their parents or guardians.
## Community Support
## **Bringing people together to share experiences and find out about the latest care and treatment available is one of the most rewarding aspects of our work.**
Genetic bleeding disorders are rare, and it can be isolating to be the only person with this condition in a workplace, village, school or sports team. By connecting our members through in-person events and our supportive social media community, people can be reassured that they are not alone in whatever challenges they are facing. Sharing experiences also empowers people to think again about their care as they learn about the treatment of others and find out more about the options open to them.
This year, 363 adults and children registered to attend one of five in-person events held in four locations in England.
## Big Get-Together annual conference
We were held our first in-person conference since 2019, which took place in Leeds and attracted 129 attendees. The one-day Big Get-Together (BGT) was packed with informative talks, workshops and discussions featuring input from some of the UK’s leading experts in bleeding disorder care as well as people who live with a genetic bleeding disorder. There was also plenty of time to network informally and share experiences.
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## Talking Red Live
## ‘I’ve never felt part of something until I was surrounded by a range of young girls and women that have been through the things I am scared to face. I feel empowered and included because of the Haemophilia Society and I am eternally grateful.’
Phoebe, who attended Talking Red in March 2024
Talking Red is our focus on women and girls with a bleeding disorder. This takes the form of an annual dedicated event but is also a year-round campaign to raise awareness that women and girls live with genetic bleeding disorders. Although women and girls now make up the majority of people in the UK with a diagnosed bleeding disorder, women often do not get the quality of care and treatment they need. Women are more likely to be diagnosed as adults and studies show that on average women with bleeding disorders are diagnosed 10 years later than men.
Talking Red Live took place this year in Leicester and featured a talk on iron deficiency and anaemia as well as a discussion about the standards of care in the UK for women and girls with a bleeding disorder. There was also a special breakout session for teenagers. We have an active Women’s Working Group which helps us set the agenda for this event to ensure that the issues discussed are what matters most to our community.
## Haemfest
‘My family thoroughly enjoyed HaemFest. I’d recommend it for all ages to meet others in a much more relaxed way and connect with affected people, families and health care professionals. My children have exchanged numbers with other kids and are already asking about next year.’
In June 2023 we held our second HaemFest, a camping event, free to members, in Derbyshire which was attended by 118 people. This family event allows us to bring together our members in an informal, cost-effective way, allowing new friendships to be formed and experiences shared. As well as workshops, there were
also activities such as stage combat fighting, circus skills and a popular arts and crafts tent. Our specialist haemophilia nurse volunteers ran a workshop for parents and children which encouraged them to think about treating themselves using a prosthetic arm to practice infusions. On Saturday evening we came together to enjoy some lively Irish dancing.
Cathy Harrison, Advanced Nurse Practitioner who volunteered at the event
‘HaemFest is more than just an event, it’s a community. The chance to connect with other families, network, and share experiences in a supportive environment is truly invaluable.’
Parent, who attended Haemfest
## Newly Diagnosed Weekends
‘The key lesson I learnt from the Newly Diagnosed Weekend was that my child can live a normal life and treatment can be well managed. There is a lot of support available.’
Our Newly Diagnosed Weekends (NDWs) provide families with expert advice, invaluable peer support and a safe space to ask questions in the very early stages of diagnosis. THS Youth Ambassadors also attend these events, sharing their experiences and bringing positivity to families who may feel uncertain about their child’s future. Specialist clinicians also support us at NDWs, answering a range of questions about treatment and care.
We held one NDW this year in Bolton where we welcomed 16 parents and 12 children. There were discussions about the benefit of physiotherapy for children and a presentation about the role of specialist haemophilia nurses as well as a chance to talk to young adults living with a bleeding disorder.
Feedback from the event was fantastic, with 100% of parents telling us that they felt more informed about their child’s bleeding disorder and empowered to make decisions about their child’s care.
## ‘I liked that it was a relaxed event with plenty of great information and amazing people sharing family experiences.’
Parent, who attended Newly Diagnosed Families Weekend
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Annual Report and financial statement 2023/24
## Awareness Days
More than 50 adults with von Willebrand disorder
(VWD) got together for a day of sharing experiences and discovering more about treatment and care at an event hosted in Sheffield.
The awareness day, which was jointly organised by the Haemophilia Society’s VWD Working Group and Sheffield Teaching Hospitals NHS Foundation Trust, was open to people who use Sheffield Haemophilia Centre. The aim of the day, which was themed, ‘We all have a voice’, was to bring people with VWD together to discuss their experiences of living with the bleeding disorder as well as to involve healthcare professionals who gave updates
## Service of Remembrance & Thanksgiving
We are honoured to host this important annual event to remember all those people with inherited bleeding disorders who have died due to their treatment with contaminated blood products. The service is held at St Botolph without Bishopsgate, London, where the book of remembrance and icon is kept. With the Infected Blood Inquiry nearing its end, there is a greater need than ever for this service, which offers a safe and welcoming space for everyone infected and affected by the contaminated blood scandal of the 1970s and 80s.
## World AIDS Day gathering
World AIDS Day in December is an important date for our community. About 1,250 people with haemophilia and other bleeding disorders were infected with HIV through treatment with contaminated blood products in the 1980s. Less than 250 are still alive. We held a small gathering in London for anyone who was infected or wanted to remember someone who had died.
## Carol Service
Our annual Carol Service held at St Botolph without Bishopsgate, London, is gaining in popularity due in part to the wonderful singing of the church choir. This paid-for event is increasingly being attended by non-members who work locally, giving us an opportunity to increase awareness about our work to a new audience. We are proud of our longstanding connection with St Botolph’s, which dates back to the 1990s when our Chair, Rev Alan Tanner served at the church.
## Ambassadors
We have four dedicated Ambassadors to support our members. Mark Ward is our LGBTQ Ambassador, Sunny Maini is our VWD Ambassador, THS staff member Scott McLean is our Mental Health Ambassador and Dr William McKeown is our Access and Service
Improvement Ambassador. Mark, Sunny and William kindly volunteer their time to provide this service, and all four travel to conferences
to highlight these issues as well as talking directly to our members to offer support and advice.
## Working Groups
The Haemophilia Society is committed to supporting all genetic bleeding disorders. We want all our members to have access to services, support and events that match their specific needs and challenges. One way we ensure the needs of those with different disorders are heard and understood is through our working groups. These groups, made up of a diverse group of volunteers, are dedicated to representing, advocating for and serving the needs of a specific community within our membership. This helps us shape what we do to ensure these
## Women’s Working Group
We have 18 members of the Women’s Working
Group who represent women with a range of genetic bleeding disorders or who care for a female with a bleeding disorder. The group takes the lead in setting the agenda for our annual Talking Red Live conference which is a day dedicated to women and girls with a bleeding disorder. Through regular online meetings, the group also helps to shape our priorities for this section of our membership. Members have provided valuable contributions to the SACRED project (see Advocacy), our latest major research initiative. The group was formed in 2020.
## Rare and Bleeding Disorder of Unknown Cause (BDUC) Working Group
Launched in 2024, the Rare and BDUC Working Group has attracted members representing more than eight extremely rare conditions, such as Glanzmann Thrombasthenia, factor V deficiency and factor VII deficiency. Although every condition is different, common themes have emerged, such as challenges with diagnosis, treatment, and psychological support. From this, the group has set goals which include identifying educational gaps for healthcare professionals, improving information online and for treating clinicians. The group meets monthly online and has created a much-needed space for individuals to share experiences, promote understanding and create ideas on how to improve knowledge about their conditions.
‘The Rare and BDUC Working Group has brought together people with extremely rare bleeding disorders that are often poorly understood and lacking effective treatment options. Together, we want to foster better awareness among healthcare professionals as well as the wider bleeding disorders community about Amy Owen-Wyard, Chair, Rare and BDUC Working Group
## Von Willebrand disorder (VWD) Working Group
Established in 2023, the VWD Working Group was set up to raise the profile of this condition within the bleeding disorder community, healthcare
profession and the general public. The group was instrumental in organising the VWD Awareness Day in Sheffield (See Community Support) and hopes to hold similar events in other parts of the UK. There are about 11,500 people in the UK with a VWD diagnosis, which makes it the most common genetic bleeding disorder. Despite this, it is a condition that can take years to diagnose and one about which most people know very little. Our VWD Working Group aims to change this.
‘We are in an exciting phase of von Willebrand disorder awareness, education and treatment. Our working group contains invaluable advocates who will use their personal experiences and wider knowledge to continue to push for excellent, accessible and equitable care for everyone with VWD.’
Hannah, VWD Working Group Member
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Annual Report and financial statement 2023/24
## Publications and educational materials
This year we produced 10 booklets and 19 downloadable factsheets. We sent out 3,033 publications, some of which are available in five languages, including Welsh, Urdu and Arabic. The booklets are used in haemophilia centres as well as by individual members to help them and their friends and relatives to understand their condition. A total of 2,860 factsheets or booklets were downloaded from our website this year.
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This year we offered the following free publications:
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- Understanding Haemophilia
- • Understanding VWD • Ageing with a bleeding disorder – social care and support
- Rare bleeding disorders
- Bleeding Disorders and School
- • Women living with bleeding disorders • Girls with living with bleeding disorders • Dental care for adults with a bleeding disorder • Sex and bleeding disorders
- A-Z guide to sport and physical activity for children with a bleeding disorder
## **We offered the following downloadable factsheets:**
- Disability Living Allowance (DLA) for children with bleeding disorders
- • Personal Independence Payment (PIP) Making a claim • PIP Assessment process • Emicizumab (for people without an inhibitor) • Emicizumab (for people with an inhibitor) • Extended half-life (EHL) factor VIII • Top tips for parents
- Patient checklist to prepare for virtual consultations
- • Factor V, factor VIII combined deficiency • Factor XIII deficiency • Factor XI deficiency • Factor X deficiency • Factor VII deficiency • Factor V deficiency • Prothrombin (factor II) deficiency • Fibrinogen (factor 1) deficiency
- Bernard Soulier syndrome
- • Glanzmann Thrombasthenia • A-Z guide to sport and physical activity for children with a bleeding disorder
## Advocacy
We continue to work with NICE, a government body which provides evidence-based guidelines for treatment and care in the NHS. We support the process by advocating for the needs of patients
From advocating for higher standards of care and equal access to effective treatment, to campaigning on local issues, THS is here to raise awareness about bleeding disorders. We work to influence decisionmakers on behalf of people affected by bleeding disorders. Our advocacy is a vital part of our role, although it is often less visible than other aspects of our charity’s work.
and access to new treatments. This year we makers on behalf of people affected by bleeding made submissions to the NICE review of Pfizer’s disorders. Our advocacy is a vital part of our role, gene therapy for Haemophilia B and Sobi’s longalthough it is often less visible than other aspects of our acting factor VIII product efanesoctocog alfa. Our charity’s work. ambassador Ross was the patient expert on the NICE committee considering CSL Behring’s Standards of Care and Haemophilia B gene therapy Hemgenix. Access to We worked closely with NHS England We were a member of in the creation of new gene therapy the specialised blood hubs in preparation for the routine disorders Clinical commissioning of Hemgenix and other Reference Group (CRG) future gene therapies for haemophilia. as one of the two patient Our work on the consenting process representatives on the for gene therapy in haemophilia and group. The CRG works with the pathway of care was accepted for NHS England to coordinate presentation and publication at the WFH specialist care for people with Annual Congress in Madrid. bleeding disorders and leads on We are members of NHS England’s the development of new treatment Specialised Commissioning Stakeholder Forum policies and service specifications. This year we which allows use to raise wider issues with how NHS worked to review the Service Specification, which treatment and care is commissioned and delivered had not been updated since 2013, which details the across England. We also work with the Haemophilia care that should be delivered by haemophilia centres. Nurses Association (HNA), the United Kingdom This was an opportunity to make sure people with Haemophilia Centre Doctors’ Organisation (UKHCDO) bleeding disorders can expect all aspects of care and the Haemophilia Chartered Physiotherapists’ they need in all centres across the country, and Association (HCPS) to ensure we are across all we can ensure people can live their best life with a aspects of haemophilia and bleeding bleeding disorder. disorder care. The new draft service specification The SACRed Project, a focusses on access to full multiyear investigation into multidisciplinary care, improving the experiences of women people’s rights to physiotherapy and and girls with bleeding seeks to strengthen networks for disorders that will make haemophilia centres so they work recommendations for more collaboratively to support improving standards people with bleeding disorders. The of care and access to new standards also form part of the treatment continued with peer review of haemophilia centres, a series of focus groups taking place in 2024. at our Big Get-together and Talking Red Live. The final report will be published in Spring 2025. We are grateful to Octapharma, LFB, Sobi, Takeda and Roche who are sponsoring this project. In partnership with Nordic Pharma we launched a survey to find out more about dental care for people with a bleeding disorder.
## Standards of Care and Access to
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Annual Report and financial statement 2023/24
Annual Report and financial statement 2022/23
## Infected Blood Inquiry
‘Thank you so much for the support and attention to detail throughout the whole inquiry.’
Comment from our dedicated public inquiry Facebook page
In April 2023 the Infected Blood Inquiry published its Second Interim Report which recommended that compensation should be paid to those infected and affected by contaminated blood products. Much of our work this year has been lobbying government to implement these recommendations.
Our Chief Executive, Kate Burt and Chair, Clive Smith were interviewed extensively for national and regional print and broadcast media when the report was published and throughout the year as we attempted to keep the pressure on government to deliver compensation.
Members of the government, including the Prime Minister, were called to give evidence to the Infected Blood Inquiry in July, which reconvened for a week to press the politicians about the pace of progress towards paying compensation. We organised a protest and march to the inquiry building to draw attention to the anxiety and anger
the government was causing by refusing to commit to paying full compensation. In February, we jointly organised a mass lobby of Parliament to highlight the issue once more. We were grateful to MPs from all parties for their support.
We have also been involved in pressing for a bespoke psychological support service for England. As well as demanding this service we have also provided advice about how the new service should look. Northern Ireland, Wales and Scotland already have this service, but England lags behind. While progress has been made, the new service is not due to be operational until autumn 2024.
Our Public Inquiry Team continues to support those infected and affected by the scandal and kept our members up to date with the work of the Infected Blood Inquiry and any political developments. We run a dedicated Facebook support page as well as a Twitter account for news updates.
## Influencing the political agenda
We seek to ensure that the treatment and care needs of people with genetic bleeding disorders is understood by political decision-makers of all parties. This year we attended the Labour and Conservative party conferences with our Chair, Clive Smith, invited to speak at Labour fringe events on the challenges facing the NHS and what they mean for people with bleeding disorders and a meeting on justice for people affected by political scandals. He met with shadow Labour ministers to discuss compensation and justice for people infected and affected by the contaminated blood scandal. In February, we organised a mass lobby of parliament where over a hundred people gathered in Westminster Hall to meet their MPs. demand transparency from the government and seek a commitment that compensation to people infected and affected by contaminated blood products will be paid. The lobby was addressed by Labour Leader Keir
Starmer.
In addition, the Haemophilia Society continued to provide the secretariat to the All Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood. In this role we facilitate meetings to coordinate parliamentary campaigns, update MPs on developments in bleeding disorder care and treatment, further the campaign for justice for people infected and affected by contaminated blood products and maintain the webpage, social media and membership information of the APPG.
## Global Connections
‘Being part of an international conference is a great way to learn more about the experiences of others with a bleeding disorder from around the world. There’s lots to learn from the treatment and care offered by other countries.’
Ross, Bennett, Youth Ambassador and Chair of Youth Board
THS values and constantly seeks to strengthen our links with fellow haemophilia and bleeding disorder associations around the world
We attended major global conferences including the European Haemophilia Consortium (EHC) conference in Zagreb, Croatia where our Youth Ambassadors Ross Bennett and Hannah Yarnall gave speeches, as did our Chair, Clive Smith.
We also had representatives at the EHC’s New Technologies conference in Lisbon, Portugal where the latest treatment and research is unveiled and discussed. We also sent two staff members to the European Association for Haemophilia and Associated Disorders (EAHAD) conference in Frankfurt, Germany.
Our trustee, Amy Owen-Wyard and staff member Scott McLean, attended the first ever conference dedicated to Glanzmann Thrombasthenia which took place in Boston in the US. Amy spoke about her experiences as the mother of a young boy with Glanzmann Thrombasthenia and led a series of workshops.
We were also pleased to be invited to attend the National Institute for Health and Care Excellence (NICE) in Manchester, England. Our Chief Executive, Kate Burt, addressed the annual conference of the haemophilia doctors’ organisation, the UKHCDO in London, England.
In addition, we have individual members who are active on the international stage. Our member, Bonne Taylor, who has severe haemophilia A, became the EHC’s Ambassador for Women with a Bleeding Disorder. Our trustee Jo Traunter and VWD Ambassador Sunny Maini are both members of the EHC’s VWD Working Group and Amy Owen-Wyard is part of the EHC’s European Rare
## and Inhibitor Network (ERIN).
conference. A number of our Youth Ambassadors addressed conference sessions, as well as our Chair, Clive Smith. We were pleased to share our knowledge on these global stages and to learn more about other countries’ experiences.
This year the International Society of Thrombosis and Haemostasis (ISTH) and the European Association for Haemophilia and Allied Disorders (EAHAD) held their conferences in London and Manchester, respectively, giving us the opportunity to send more representatives to learn about new treatments and advancements in care. Equally importantly, it was another chance to forge links with many UK health professionals and organisations within the bleeding disorders community.
## Global Connections
This year we started a three-year twinning project with the Malta Bleeding Disorders Society (MBDS), funded by grants from the World Federation of Hemophilia. During this project we will work with the MBDS board to improve their governance, increase their fundraising capacity, strengthen their advocacy and get better access to care and treatment in Malta.
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Annual Report and financial statement 2022/23
## How we manage your money
## Income Composition 2023-24
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Donations from individuals 17%
Legacies 32%
Grants & trusts 5%
Corporates 21%
Gift aid >1%
Community fundraising & events 19%
Investments 4%
Other >1%
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Charitable activities & Expenditure 2023-24
Events & member services 58% Campaigns & communications 30% Grants awarded >1% Public inquiry 11%
## Fundraising and partnerships
**We are grateful to have such dedicated partners who help us to support our members and the wider bleeding disorders community. The generosity of charitable trusts, corporate partners and volunteers helps us to continue to deliver our core services for our members.**
## Corporate Partners
## Events
We receive ongoing support from partners in the pharmaceutical and private sectors, which includes sponsorship of member events, charitable grants and gifts of pro bono support.
Thank you to everyone who walked, ran, cycled, swam, sky dived, played golf, baked, organised raffles and undertook many other challenges to raise funds for THS. We are very grateful for all that you do.
Thank you to CSL Behring, LFB, Nordic Pharma, Octapharma, Pfizer, Roche-Chugai, SOBI and Takeda for their support in 2023 to 2024 and beyond.
Without this funding, it would be impossible for us to run many of our events which offer essential support to our members. We would like to emphasise that here are strict guidelines relating to donations from pharmaceutical companies to health organisations which we adhere to at all times.
Companies must respect the independence of the project and organisation to which they have donated and are not allowed to influence any of its written material. As per clause 29 of the 2021 ABPI code, all pharmaceutical companies must declare their sponsorship of ‘patient organisations’, which is how THS is classed under the code.
Val, who is part of our Lincolnshire and East Midlands Local Group, raising vital funds
## Trusts and Foundations
We continue to strengthen our relationships and grow support from trusts and foundations to fund our ongoing project delivery. We have built robust sources of funding and are committed to further strengthening our partnership with our funders to support continued growth.
## National haemophilia charities
We are grateful for the productive relationships we have with the national haemophilia charities in Scotland and Northern Ireland. We liaise with both organisations to maximise advocacy, particularly in relation to issues arising from the Infected Blood Inquiry’s work.
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Natalie, trustee,
volunteering at
Youth Camp 2023
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## Volunteers
Without our volunteers, we would be unable to host the events which we know our members find so valuable, nor could we run our charity, which is governed by unpaid volunteers who are elected to serve on our Board of Trustees.
We are very grateful to our clinical volunteers, such as haemophilia nurses, consultants and physiotherapists, who give up their time to supervise events, such as Youth Camp and HaemFest or to speak at our conferences or information days. We also could not manage events such as Youth Camp without an army of volunteers to supervise climbing walls, canoeing, fire building and other fun activities that make this event so special for our younger members. We appreciate the contribution of every single volunteer.
**‘Becoming a THS trustee has given me the opportunity to develop my knowledge and understanding of bleeding disorders and how these affect our population. I am privileged to use this experience to help advocate for better education and treatment for all bleeding disorders. Most importantly, I have made friends and connections who I know will be a support to me for life.’**
## Little Bleeders
We continue to work closely with Little Bleeders, the charity established by former professional cyclist Alex Dowsett, which encourages young people with bleeding disorders to get involved in sport and stay active.
**----- Start of picture text -----**
Trustees at board
meeting in Belfast
**----- End of picture text -----**
Stacey, THS Trustee
**----- Start of picture text -----**
Stacey, THS Trustee
**----- End of picture text -----**
## A big thank you
## **Together, we continue to work to improve the lives of everyone with a genetic bleeding disorder and their families.**
We’d also like to thank our trustees, who give their time so generously to ensure our organisation is run as efficiently and productively as possible for the benefit of our members.
We have some of the most loyal and generous supporters any charity could wish for. The individual donations and legacies that we receive and the contributions from our partners, large or small, makes everything that we do possible.
**----- Start of picture text -----**
Matt, whose uncle had
haemophilia and died as a
result of the contaminated
blood scandal, spent a year
fundraising for THS and made
more than £3,000 for our
charity
The Hearne family ran the
Westminster Mile after young Tegan held a ‘wear
Amelia was diagnosed with red’ day at her school to
von Willebrand disorder raise awareness about
haemophilia on behalf of her
younger brother Jago who
has the condition.
Reya and Jayden, whose
mother has a factor VII
deficiency, fundraising for Craig Wheeler, pictured
THS with Scott McLean from THS,
raised more than £11,000 for
Jacob, who has severe THS by nominating us as his
haemophilia A, and his pal Charity of the Year when he
Joshua on a sponsored walk became Mayor of Thrapston.
Craig’s son Arthur has severe
haemophilia B.
**----- End of picture text -----**
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## Our Staff
We are an extremely busy charity and rely on our staff to offer an efficient, knowledgeable and compassionate service to our members and our stakeholders. We currently have 11 members of staff, four of whom work part-time.
Kate Burt, Fiona Donoghue, Debra Morgan, Nicola Sugg, Chief HR and Head of Policy and Events and Executive Office Manager Public Affairs Membership Manager
Julia Collins, Rosie Devlin, Jessica Bomford, Jefferson Courtney, Events and Events and Communications Policy and Content Officer Office Coordinator Manager Public Affairs Manager (from September 2023)
Sam Wilson, Paula McCabe, Scott McClean, Lina Gorenscek, Digital Marketing and Finance Fundraiser and Community Fundraiser Content Manager Officer Member Advocate (until September 2023) (from September 2023)
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## Our governance
## **Subcomittees**
|Our
|**Subcomittees**||
|---|---|---|
|governance|Finance and Risk Committee|Gordon Dixon – Chair
Clive Smith
Conan McIlwrath|
|||Susan Stretch|
|hard to set the highest standards as an organisation. Our policies and procedures||Rayaz Ali Chel|
|r values and we designed them to help us keep to those standards. We communicate|||
|ur employees and volunteers and give everyone the training they need to uphold them.|Nominations Committee|Gordon Dixon|
|ecord our decisions and incidents, monitor our performance, and gather feedback to||Clive Smith|
|arn and improve.|||
|gned up to the Fundraising Regulator’s ‘Fundraising Promise’ which summarises our|Public Inquiry Committee|Clive Smith – Chair|
|ent to individuals who support our work. The promise includes a commitment to make||Conan McIlwrath|
|orters’ experience as positive and rewarding as we can. We are committed to being||Susan Stretch|
|d transparent about where our supporters’ donations go and why we need funding.||Paul Sartain|
|y of our supporters’ data is very important to us.||Eileen Ross|
|etermined to take all obligations seriously and we will:||Barry Flynn|
|r sell or share our supporters’ data with any third-party fundraising organisations|Clinical Advisory Group|Dr Rezan Abdul-Kadir|
|spectful and accountable to our supporters||Dr Susie Shapiro|
|inue to be sensitive when engaging with vulnerable people and our practice will refect||Dr Kate Khair|
|||Prof Mike Laffan|
|inue to ensure our supporters feel valued and in control of their relationship with us.||Andrew Martin|
|||Debra Pollard|
|||David Stephenson|
|||Musrat Pinnu|
|nistration and legal details|Company Secretary|Paul Sartain|
||Bankers|Natwest Bank|
|Who we are||London Bridge|
|||PO Box 35|
|**President**
Baroness Meacher||10 Southwark Street|
|||London|
|**Chief Executive**
Kate Burt||SE1 1TJ|
|**Board of Trustees**
Clive Smith – Chair|Solicitors|Eversheds Sutherland|
|Conan McIlwrath – Vice Chair||1 Wood Street|
|Susan Stretch – Vice Chair||London|
|Gordon Dixon – Treasurer||EC2V 7WS|
|Sonia O’Hara (until November 2023)|||
|Paul Sartain|Auditors|Ellacotts,|
|Joanne Traunter||Countrywide House,|
|Anna Geffert (until November 2023)||23 West Bar Street,|
|Amy Owen-Wyard||Banbury, OX16 9SA|
|Rayaz Ali Chel|||
|Natalie Lawson|Company registration number|01763614|
|Lisa Bagley (from November 2023)|||
|Stacey McGeown (from November 2023)|Charity registration number|288260|
||Scottish charity registration number|SC039732|
We work hard to set the highest standards as an organisation. Our policies and procedures reflect our values and we designed them to help us keep to those standards. We communicate them to our employees and volunteers and give everyone the training they need to uphold them. We also record our decisions and incidents, monitor our performance, and gather feedback to help us learn and improve.
We are signed up to the Fundraising Regulator’s ‘Fundraising Promise’ which summarises our commitment to individuals who support our work. The promise includes a commitment to make our supporters’ experience as positive and rewarding as we can. We are committed to being honest and transparent about where our supporters’ donations go and why we need funding. The safety of our supporters’ data is very important to us. We are determined to take all obligations seriously and we will:
- Never sell or share our supporters’ data with any third-party fundraising organisations
- Be respectful and accountable to our supporters
- Continue to be sensitive when engaging with vulnerable people and our practice will reflect this
- Continue to ensure our supporters feel valued and in control of their relationship with us.
## Administration and legal details
22
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Annual Report and financial statement 2023/24
spent sorting through data and putting in place systems which mean we will be able to communicate more effectively and efficiently with our members and stakeholders.
## Trustees’ report
The trustees present their report and the audited financial statements of the charity for the year ended 31 March 2024. The trustees have adopted the provisions of the Statement of Recommended Practice (SORP) Accounting and Reporting by Charities (FRS 102) in preparing the annual report and financial statements of the charity. The Trustees’ annual report incorporates the Directors’ report and Strategic report.
The financial statements have been prepared in accordance with the accounting policies set out in notes to the accounts and comply with the charity’s governing document, the Companies Act 2006, the Charities Act 2011 and 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 (effective 1 January 2019).
## Trustees of the charity
Overall, we have generated a loss for the year of £377k, which resulted in a significant reduction of reserves. This figure includes the planned investment in the data management systems, as described above.
Income (including legacies) for FY24 has fallen by26% compared to FY23 to £562,769 in FY24. Corporate and events income has still not returned as we had forecasted to pre-pandemic levels. Costs were reduced by 12% for FY24 with total expenditure of £940,418
Legacy income received of £181,082 FY24 has decreased by 36% compared with the previous year (£282,147 in FY23). Given the nature of legacies, there will always be a large variance on a yearly basis. We are grateful to all our members who remember THS in their will.
## Reserves
THS reserves on 31/03/24 stood at £634,986.
In recognition of the significant financial and general resource impact of the ongoing Infected Blood Inquiry, the board in 2019 designated £600,000 of reserves to fund the charity’s work in this area. In the combined years to date we have invested £813,054 to our work on the inquiry. Designated funds are reviewed annually to ensure the appropriate use of reserves.
The directors of the charitable company are its trustees for the purposes of charity law. The trustees who have served during the year and since the year end were as follows:
Clive Smith
Conan McIlwrath Susan Stretch Gordon Dixon Paul Sartain Joanne Traunter Amy Owen-Wyard Rayaz Ali Chel Natalie Lawson Stacey McGeown Lisa Bagley
## Financial review
The charitable sector continues to be hit hard rising demand for services and falling income. THS, like many others, has felt the impact of this as our members feel the squeeze on their own budgets.
Under the Memorandum and Articles of Association the trustees may invest surplus funds in any investment they consider appropriate. To this end we have invested in COIF Investment Funds, which invest on our behalf, based on a diversified and prudent investment strategy directly into assets to mitigate concentration of risks.
## Key risks and uncertainties
Key risks to the charity fell into two distinct areas and were identified as: **Financial**
As described above, we are operating in a challenging financial environment and planning to focus our income generating strategy on building trust and foundation relationships as well as increasing and diversifying our corporate partnerships.
## **Reputational**
The Infected Blood Inquiry’s final report and recommendations are expected in 2024. As part of its Terms of Reference, the inquiry has examined the work of THS over a 40-year period and we would expect this to be set out in its final report.
We will continue to monitor the risks and refer to the board to ensure they are aware of issues arising.
These challenges make it more important than ever that we focus on efficiency and ensuring that we offer our members a relevant and useful service while doubling down on achieving diverse and reliable funding sources.
We expect to reap the benefits of a long-term investment in a new platform to record data and organise information in the 2024/25 financial year. Much of this year has been
24
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Annual Report and financial statement 2023/24
hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
## **Structure, governance and management**
The Haemophilia Society is a registered charity in England (number 288260) and Scotland (number SCO39732) and company limited by guarantee (number 01763614). The Haemophilia Society’s governing document is its Memorandum and Articles of Association.
The trustee board has:
- seven ordinary trustees (elected by members of THS)
- • one honorary chair
- up to four co-opted trustees.
Elections take place prior to the AGM in November each year and trustees are elected for a five-year term. They may stand again for election for a further five-year term.
A call for nominations is sent to every member in September requesting trustees’ nominations signed by another member. Information on the roles and responsibilities of a trustee and details of current trustees are available on our website.
The Chair is appointed to the board following an interview process.
## Statement of accounting and reporting responsibilities
The trustees (who are also the directors of the Haemophilia Society for the purposes of company law) are responsible for preparing the annual report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
## Relevant audit information
We, the directors of the company who held office at the date of approval of these financial statements as set out above each confirm, so far as we are aware, that:
- there is no relevant audit information of which the company’s
- auditors are unaware, and
- we have taken all the steps that we ought to have taken as
- directors in order to make ourselves aware of any relevant audit information and to establish that the company’s auditors are aware of that information.
In approving the trustees’ annual report, we also approve the strategic report included therein, in our capacity as company directors.
On behalf of the board
## Clive Smith
Chair, the Haemophilia Society Date: 13 December 2024
Company law requires the directors to prepare financial statements for each financial year. Under that law the directors 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 incoming resources and application of resources, including the income and expenditure, of the charity for that period. In preparing these financial statements, the directors are required to:
- select the most suitable accounting policies and then to apply
- them consistently
- observe the methods and principles in the Charities SORP
- make judgements and accounting estimates that are reasonable
- state whether applicable UK Accounting Standards have been
- followed, subject to any material departures disclosed and explained in the financial statements
- prepare the financial statements on the going concern basis
- unless it is inappropriate to presume that the charity will continue in operation.
The directors are responsible for keeping adequate accounting records that are sufficient to show and explain the charity’s transactions, disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Companies Act 2006 and the provisions of the charity’s constitution. They are also responsible for safeguarding the assets of the charity and
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## Independent auditor’s report to the members of the Haemophilia Society
## Opinion
We have audited the financial statements of The Haemophilia Society (the ‘charity’) for the year ended 31 March 2024 which comprise the statement of financial activities, the summary income and expenditure account, the balance sheet, the statement of cash flows 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 Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).
## In our opinion, the financial statements:
- give a true and fair view of the state of the charitable company’s affairs as at 31 March 2024 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, the Charities and Trustee Investment (Scotland) Act 2005 and regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended).
## 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 charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion..
## Conclusions relating to going concern
In auditing the financial statements, we have concluded that the Trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.
Based on the work we have performed, we have not identified any material
uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
Our responsibilities and the responsibilities of the Trustees with respect to going concern are described in the relevant sections of this report.
## Other information
The other information comprises the information included in the annual report other than the financial statements and our auditor’s report thereon. The Trustees are responsible for the other information contained within the 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.
## Opinions on the matters prescribed by the Companies Act 2006
In our opinion, based on the work undertaken in the course of our audit:
- the information given in the Trustees’ report for the financial year for which the financial statements are prepared, which includes the directors’ report prepared for the purposes of company law, is consistent with the financial statements; and
- the directors’ report included within the Trustees’ 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 charity and its environment obtained in the course of the audit, we have not identified material misstatements in the directors’ report included within the Trustees’ report.
We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 (as amended) require us to report to you if, in our opinion:
- adequate and proper 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; or
- the Trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies’ exemptions in preparing the Trustees’ report and from the requirement to prepare a strategic report.
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Annual Report and financial statement 2023/24
## Responsibilities of trustees
As explained more fully in the statement of Trustees’ responsibilities, the Trustees, who are also the directors of the charity for the purpose 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 charity’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the 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
We have been appointed as auditor under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with the Acts and relevant regulations made or having effect thereunder.
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue 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.
Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:
As part of an audit in accordance with ISAs (UK), We exercise professional judgment and maintain professional scepticism throughout the audit. We also performed the following procedures:
- Enquiry of management and those charged with governance around actual and potential litigation and claims.
- Enquiry of entity staff in compliance functions to identify any instances of non-compliance with laws and regulations.
- Reviewing minutes of meetings of those charged with governance.
- Reviewing financial statement disclosures and testing to supporting documentation to assess compliance with applicable laws and regulations.
- • Reviewed income and expenditure to ensure classified to the appropriate fund.
- Reviewed minutes of board meetings for matters relevant to the audit.
- • Auditing the risk of management override of controls, including thorough testing of journal entries and other adjustments for appropriateness, and evaluating the rationale of significant transactions outside the normal course of business for the charity.
A further description of our responsibilities is available on the Financial Reporting Council’s website at: https:// www.frc.org.uk/ auditorsresponsibilities. This description forms part of our auditor’s report.
## 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 and to the regulation 10 of the Charities Accounts (Scotland) Regulations 2006. Our audit work has been undertaken so that we might state to the charitable company’s members and trustees 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, the charitable company’s members as a body,and the charitable company’s trustees as a body, for our audit work, for this report, or for the opinions we have formed.
The extent to which our procedures are capable of detecting irregularities, including fraud, is detailed below.
## Extent to which the audit was considered capable of detecting irregularities, including fraud
Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.
.........................
Leigh Dudley FCCA (Senior Statutory Auditor) for and on behalf of Ellacotts Audit Services Limited
Chartered Accountants Statutory Auditor Countrywide House 23 West Bar Banbury Oxfordshire England OX16 9SA
Date.........................
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Annual Report and financial statement 2023/24
## Statement of financial activities (including income and expenditure account)
## Current financial year
|**Notes**
**Income and endowments**
**from:**
Donations and legacies
**2**
Charitable activities
**3**
Investments
**4**
Other income
**5**
**Total income and**
**endowments**
**Expenditure on:**
Raising funds
**6**
Charitable activities
**7**
**Total expenditure**
Net gains/(losses) on
investments
**12**
**Net income/(expenditure)**
Transfers between funds
**Net movement in funds**
9
**Reconciliation of funds:**
Fund balances at 1 April 2023
**Fund balances at 31 March**
**2024**|**Unrestricted**
**funds**
**2024**
**£**
319,950
95,319
23,473
4,324
443,066
184,243
662,133
846,376
39,212
(364,098)
(40,328)
(404,426)
682,436
278,010|**Restricted**
**funds**
**2024**
**£**
96,297
11,071
-
219
107,587
14,094
82,227
96,321
-
11,266
40,328
51,594
118,072
169,666|**Endowment**
**funds**
**2024**
**£**
-
-
-
-
-
-
-
-
-
-
-
-
15,300
15,300||**Total**
**2024**
**£**
416,247
106,390
23,473
4,543
550,653
198,337
744,360
942,697
39,212
(352,832)
-
(352,832)
815,808
462,976|**Total**
**2023**
**as restated**
**£**
659,016
96,331
24,891
13,551|
|---|---|---|---|---|---|---|
|||||||793,789|
|||||||183,151
885,862|
|||||||1,069,013|
|||||||(46,637)|
|||||||(321,861)
-|
|||||||(321,861)
1,137,669|
|||||||815,808|
## Previous financial year
|**Notes**
**Income and endowments**
**from**:
Donations and legacies
**2**
Charitable activities
**3**
Investments
**4**
Other income
**5**
**Total income and**
**endowments**
**Expenditure on:**
Raising funds
**6**
Charitable activities
**7**
**Total expenditure**
Net gains/(losses) on
investments
**12**
**Net expenditure and**
**movement in funds**
**Reconciliation of funds:**
Fund balances at 1 April 2022
**Fund balances at 31 March**
**2023**||**Unrestricted**
**funds**
**2023**
**as restated**
**£**
475,589
87,261
23,492
13,131
599,473
171,930
746,283
918,213
(46,637)
(365,377)
1,047,813
682,436||**Restricted**
**funds**
**2023**
**as restated**
**£**
183,127
9,070
1,399
420
194,016
11,221
139,579
150,800
-
43,216
74,856
118,072||**Endowment**
**funds**
**2023**
**as restated**
**£**
300
-
-
-
300
-
-
-
-
300
15,000
15,300||**Total**
**2023**
**as restated**
**£**
659,016
96,331
24,891
13,551|
|---|---|---|---|---|---|---|---|---|
|||||||||793,789|
|||||||||183,151
885,862|
|||||||||1,069,013|
|||||||||(46,637)|
|||||||||(321,861)
1,137,669
815,808|
||||||||||
All income and expenditure derive from continuing activities. The statement of financial activities includes all gains and losses recognised in the year.
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Annual Report and financial statement 2023/24
## Summary income and expenditire account
## All income funds
|Gross income
Gains/(losses) on investments
Total income in the reporting period
Total expenditure from income funds
**Net expenditure for the year**|**2024**
**£**
550,653
39,212
589,865
942,697
(352,832)|**2023**
**as restated**
**£**
793,489
(46,637)|
|---|---|---|
|||746,852
1,069,013|
|||(322,161)|
**Net expenditure for the year**
## Balance sheet
## As at 31 March 2024
|**Notes**
**Fixed assets**
Tangible assets
**14**
Investments
**15**
**Current assets**
Debtors
**16**
Cash at bank and in hand
**Creditors: amounts falling due within one year**
**17**
**Net current assets**
**Total assets less current liabilities**
**The funds of the charity**
Endowment funds
**19**
Restricted income funds
**20**
Unrestricted funds
**21**|**2024**
**£**
69,694
263,591
333,285
(275,909)|**£**
634
404,966
405,600
57,376
462,976
15,300
169,666
278,010
462,976|**2023**
**as restated**
**£**
71,730
140,796
212,526
(131,644)|**£**
5,172
729,754
734,926
80,882|
|---|---|---|---|---|
|||||815,808|
|||||15,300
118,072
682,436
815,808|
The financial statements were approved by the Trustees on Friday 13 December 2024.
..............................
Clive Smith Trustee
Company registration number 01763614 (England and Wales)
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Annual Report and financial statement 2023/24
Annual Report and financial statement 2023/24
## Statement of cash flows
Year ended 31 March 2024
## Notes to the financial statements for the year ended 31 March 2024
## 1 Accounting policies
|**Notes**
**Cash fows from operating activities**
Cash absorbed by operations
**25**
**Investing activities**
Purchase of tangible fxed assets
Proceeds from disposal of investments
Investment income received
**Net cash generated from investing activities**
**Net cash used in fnancing activities**
**Net increase in cash and cash equivalents**
Cash and cash equivalents at beginning of year
**Cash and cash equivalents at end of year**|**2024**
**£**
-
364,000
23,473|**£**
(264,678)
387,473
-
122,795
140,796
263,591|**2023**
**£**
(2,036)
250,000
24,891|**£**
(263,056)
272,855
-|
|---|---|---|---|---|
|||||9,799
130,997|
|||||140,796|
At the year end £157,530 (2023 - £28,187) of the total cash and cash equivalents is held on behalf of third parties. An equal and opposite amount is also showing within the other creditor at the year end.
The notes on pages 37 to 51 form part of these financial statements.
## Charity information
The Haemophilia Society (“THS”) is a company limited by guarantee in the United Kingdom. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the charity. The address of the registered office is given in the charity information of these financial statements. The nature of the charity’s operations and principal activities are to provide support and services to everybody affected by inherited bleeding disorders in the UK.
## 1.1 Accounting convention
The charity constitutes a public benefit entity as defined by FRS 102. 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), the Companies Act 2006, the Charities Act 2011 and the provisions of the Charities Act 2022 in force at the time of preparing these accounts, and UK Generally Accepted Practice.
The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.
The financial statements have been prepared on a going concern basis under the historical cost convention, modified to include the revaluation of investments at market value. The principal accounting policies adopted are set out below. These policies have been consistently applied to all years presented unless otherwise stated.
## 1.2 Prior period error
During the audit, it was noted that income and expenditure relating to two third party organisations had previously been recognised in the statement of financial activities of The Haemophilia Society. This was subsequently corrected for the year to 31 March 2024 however it also resulted in a restatement of the comparative figures.
The impact on the comparative figures was a reduction to income of £1,437, a reduction to expenses of £4,188 and an improvement to the result of £2,751. Amounts due to the third party organisations of £28,187 have been restated from restricted reserves to liabilities.
## 1.3 Going concern
The Trustees have considered the level of funds held and the expected level of income and expenditure for 12 months from authorising these financial statements. Based on the projected cash flow information for 12 months from the date of approval of these financial statements, taking into consideration the estimation of the continued impact of Covid and resources available, the trustees have a reasonable expectation that the charitable company has adequate resources to continue in operational existence for the foreseeable future. Thus, the trustees continue to adopt the going concern basis of accounting in preparing the financial statements.
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## 1. Summary of significant accounting (continued)
## 1.4 Charitable funds
Unrestricted funds are available for use at the discretion of the Trustees in furtherance of the general objectives of the charity and which have not been designated for other purposes. THS is represented throughout the country by local groups. Local group funds are incorporated into THS’s financial statements.
Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the charity for particular purposes. The cost of raising and administering such funds is charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.
Endowment funds represent those assets which must be held permanently by the charity, principally the Phillip Morris Art Award Fund and the Howard Abraham Memorial Award Fund. The interest earned on these funds is credited to the relevant restricted fund to fund awards.
## 1.5 Income
All incoming resources are included in the Statement of financial activities (SoFA) when the charity is legally entitled to the income after any performance conditions have been met, the amount can be measured reliably and it is probable that the income will be received.
Grant income is recognised in accordance with the terms of the grant and when the conditions of receipt have been complied with. When donors specify that grants given to the charity must be used in future accounting periods, the income is deferred until those periods.
## 1. Summary of significant accounting (continued)
VAT is charged as an expense against the activity for which expenditure arose.
Support costs are those that assist the work of the charity but do not directly represent charitable activities and include office overheads, governance costs, charity administration and salary core costs. They are incurred directly in support of expenditure on the objects of the charity and include project management carried out at headquarters. Where support costs cannot be directly attributed to particular headings they have been allocated to cost of raising funds and expenditure on charitable activities in proportion to direct costs incurred. Salary costs are allocated based on an analysis of staff time spent.
## 1.7 Tangible fixed assets
Tangible fixed assets for use by the charity are are initially measured at cost and subsequently measured at cost, less accumulated depreciation.
Depreciation is recognised so as to write off the cost or valuation of assets less their residual values over their useful lives on the following bases:
Fixtures and fittings 25% per annum, straight line Office equipment and furniture 25% per annum, straight line
The gain or loss arising on the disposal of an asset is determined as the difference between the sale proceeds and the carrying value of the asset, and is recognised in the statement of financial activities.
## 1.8 Fixed asset investment
Donations, legacies and similar incoming resources are included in the year in which they are receivable, which is when the charity becomes entitled to the resource.
Income from charitable activities includes income earned from community fundraising and events and local group activities to raise funds for the charity. Income is received in exchange for supplying goods and services in order to raise funds and is recognised when entitlement has occurred.
Investment income is earned through holding assets for investment purposes. It includes interest income, which is included when the amount can be measured reliably and the charity’s right to receive payment is established.
No amount is included in the financial statements for volunteer time in line with the SORP (FRS 102).
## 1.6 Expenditure
All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category. Expenditure is recognised where there is a legal or constructive obligation to make payments to third parties, it is probable that the settlement will be required and the amount of the obligation can be measured reliably. It is categorised under the following headings:
Investments are recognised initially at fair value. Subsequent gains and losses, which represent the difference between the opening market value and closing market value or proceeds of sale, are recognised in the financial statements in the period to which they relate
## 1.9 Impairment of fixed assets
Investments are recognised initially at fair value. Subsequent gains and losses, which represent the difference between the opening market value and closing market value or proceeds of sale, are recognised in the financial statements in the period to which they relate
## 1.10 Cash and cash equivalents
Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities.
## 1.11 Financial instruments
The charity 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 in the charity’s balance sheet when the charity becomes party to the contractual provisions of the instrument.
- costs of raising funds includes fundraising salary and trading costs, direct and support costs
- expenditure on charitable activities includes communications, membership, services, advocacy and influencing, corner stone project, public inquiry and tanner fund grant costs, and
- other expenditure represents those items not falling into the categories above
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.
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## 1. Summary of significant accounting (continued)
Debtors and creditors with no stated interest rate and receivable or payable within one year are recorded at transaction price. Any losses arising from impairment are recognised in expenditure.
## Employee benefits
## 1.12
The cost of any unused holiday entitlement is recognised in the period in which the employee’s services are received.
Pensions in respect of qualifying employees are provided by individual money purchase schemes. THS’s contributions to these schemes are charged to the SoFA in year in which they arise
## 1.13 Retirement benefits
Payments to defined contribution retirement benefit schemes are charged as an expense as they fall due.
## 1.14 Leases
Rentals payable and receivable under operating leases are charged to the SoFA on a straight line basis over the period of the lease.
## 1.15 Provisions
Provisions are recognised when the charity has an obligation at the balance sheet date as a result of a past event, it is probable that an outflow of economic benefits will be required in settlement and the amount can be reliably estimated.
## 1.16 Government grants
Government grants are recognised at the fair value of the asset received or receivable when there is reasonable assurance that the grant conditions will be met and the grants will be received.
A grant that specifies performance conditions is recognised in income when the performance conditions are met. Where a grant does not specify performance conditions it is recognised in income when the proceeds are received or receivable. A grant received before the recognition criteria are satisfied is recognised as a liability.
## 1.17 Taxation
The charity is an exempt charity within the meaning of schedule 3 of the Charities Act 2011 and is considered to pass the tests set out in Paragraph 1 Schedule 6 Finance Act 2010 and therefore it meets the definition of a charitable company for UK corporation tax purposes.
## 2. Income from donations and legacies
|. Income from charitable activities
. Income from investments
**Unrestricted**
**funds**
**2024**
**Restricted**
**funds**
**2024**
**Endowment**
**funds**
**2024**
**Total**
**2024**
**U**
**£**
**£**
**£**
**£**
Donations
79,732
18,551
-
98,283
Legacies
181,082
-
-
181,082
Grants and trust income
13.387
16,746
-
30,133
Corporate income
45,703
61,000
-
106,703
Gift Aid
46
-
-
46
319,950
96,297
-
416,247
**Unrestricted**
**funds**
**2024**
**Restricted**
**funds**
**2024**
**£**
**£**
**Local group activities**
Events
-
794
**Community fundraising and events**
Events
95,319
10,277
95,319
11,071
**Unrestricted**
**funds**
**2024**
**Restricted**
**funds**
**2024**
**£**
**£**
Interest
23,473
-|**nrestricted**
**funds**
**2023**
**£**
(54,074)
282,147
50,500
176,751
20,265||**£**
183,127
-
-
-
-
183,127
**Unrestricted**
**funds**
**2023**
**£**
114
87,147|**End**|**owment**
**funds**
**2023**
**£**
300
-
-
-
-
300
**Restricted**
**funds**
**2023**
**£**
-
9,070||**Total**
**2023**
**£**
129,353
282,147
50,500
176,751
20,265
659,016
**Total**
**2023**
**£**
114
96,217|
|---|---|---|---|---|---|---|---|
||475,589|||||||
||**Total**
**2024**
**£**
794
105,596|||||||
||106,390
**Total**
**2024**
**£**
23,473||87,261||9,070||96,331|
||||**Unrestricted**
**funds**
**2023**
**£**
23,492||**Restricted**
**funds**
**2023**
**£**
1,399||**Total**
**2023**
**£**
24,891|
## 3. Income from charitable activities
## 4. Income from investments
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## 5. Other incomes
|**Unrestricted**
**funds**
**2024**
**£**
Other income
2,688
Insurance claim
1,636
4,324
**Unrestricted**
**funds**
**2024**
**£**
**Fundraising and publicity**
Seeking donations, grants and legacies
38,757
Support costs
145,486
184,243
6. Expenditure on raising funds|**Restricted**
**funds**
**2024**
**£**
219
-
219
**Restricted**
**funds**
**2024**
**£**
14,094
-
14,094|**Total**
**2024**
**U**
**£**
2,907
1,636
4,543
**Total**
**2024**
**U**
**£**
52,851
145,486
198,337|**nrestricted**
**funds**
**2023**
**£**
13,131
-
13,131
**nrestricted**
**funds**
**2023**
**£**
25,479
146,451
171,930|**Restricted**
**funds**
**2023**
**£**
420
-
420
**Restricted**
**funds**
**2023**
**£**
11,221
-
11,221|**Total**
**2023**
**£**
13,551
-|
|---|---|---|---|---|---|
||||||13,551|
||||||**Total**
**2023**
**£**
36,700
146,451|
||||||183,151|
## 6. Expenditure on raising funds
## 7. Expenditure on charitable activities
|**Commu**
**Direct costs**
Activities undertaken directly
Grant funding of activities
**Share of support and governance costs**
**(see note 8)**
Support
**Analysis by fund**
Unrestricted funds
Restricted funds|**nications**
**2024**
**Membership**
**funds**
**2024**
**£**
**£**
47,350
20,447
-
-
47,350
20,477
109,788
15,827
157,138
36,274
157,138
35,975
-
299
157138
36274|**Services**
**2024**
**Advocacy and**
**infuencing**
**2024**
**Cornestone**
**project**
**2024**
**Public**
**inquiry**
**2024**
**Ta**
**£**
**£**
**£**
**£**
97,258
21,160
8,365
2,391
-
-
-
-
97,258
21,160
8,365
2,391
298,733
39,206
-
82,434
395,991
60,366
8,365
84,825
315,463
60,366
8,365
84,825
80,528
-
-
-
395991
60366
8365
84825|**nner fund**
**grants**
**2024**
**£**
-
1,400
1,400
-
-
-
1,400
1400|**Tota**
**2024**
**£**
196,971
1,400|
|---|---|---|---|---|
|||||198,371
545,988|
|||||744,359|
|||||662,132
82,227|
|||||744359|
## 7. Expenditure on charitable activities (previous year)
|**Comm**
**Direct costs**
Activities undertaken directly
Grant funding of activities
**Share of support and governance costs**
**(see note 8)**
Support
**Analysis by fund**
Unrestricted funds
Restricted funds|**unications**
**2023**
**Membership**
**funds**
**2023**
**£**
**£**
13,663
7,809
-
-
13,663
7,809
139,369
20,092
153,032
27,901
150,118
27,422
2,914
479
153,032
27,901|**Services**
**2023**
**Advocacy and**
**infuencing**
**2023**
**Cornestone**
**project**
**2023**
**Public**
**inquiry**
**2023**
**Ta**
**£**
**£**
**£**
**£**
142,836
9,272
14,778
2,956
-
-
-
-
142,836
9,272
14,778
2,956
379,223
49,769
-
104,645
522,059
59,041
14,778
107,601
393,822
62,247
5,073
107,601
128,237
(3,206)
9,705
-
522,059
59,041
14,778
107,601|**nner fund**
**grants**
**2023**
**£**
-
1,450
1,450
-
1,450
-
1,450
1,450|**Total**
**2023**
**£**
191,314
1,450|
|---|---|---|---|---|
|||||192,764
693,098|
|||||885,862|
|||||746,283
139,579|
|||||885,862|
## 8. Support costs allocated to activities
|Staff costs
Depreciation and loss on disposals
Governance
Travel, postage and carriage
Information technology
Ofce costs
Recruitment, training and temporary staff
Other expenses
Governance costs
**Analysed between:**
Fundraising
Communications
Membership
Services
Advocacy and infuencing
Public inquiry|**2024**
**£**
511,746
4,537
17,592
25,862
17,718
11,504
11,424
60,745
30,346
691,474
145,486
109,788
15,827
298,733
39,206
82,434
691,474|**2023**
**£**
675,805
6,053
14,173
13,376
19,492
7,273
11,842
49,421
42,114|
|---|---|---|
|||839,549|
|||146,451
139,369
20,092
379,223
49,769
104,645|
|||839,549|
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Annual Report and financial statement 2023/24
## 9. Net movement in funds
**----- Start of picture text -----**
2024 2023
£ £
The net movement in funds is stated after charging/(crediting):
Fees payable for the audit of the charity's financial statements 10,500 11,100
Depreciation of owned tangible fixed assets 2,035 6,053
Loss on disposal of tangible fixed assets 2,502 -
Operating lease charges 30,346 42,114
**----- End of picture text -----**
## 10. Trustees
None of the Trustees (or any persons connected with them) received or waived any remuneration or benefits from the charity during the year.
£7,417 (2023 - £6,426) was reimbursed to eleven (2023 - nine) trustees during the year for travel, subsistence and accommodation expenses. Included within trustee expenses was £2,992 (2023 - £3,398) paid directly to third parties.
## 11. Employees
|The average number of employees during the year was:
Employees
**Employment costs**
Wages and salaries
Social security costs
Other pension costs
The number of employees whose annual remuneration was more than £60,000 is as follows:
£60,000-£70,000
£80,001-£90,000
£90,001-£100,000
**Remuneration of key management personnel**
The charity considers its key management personnel to be the board of trustees and the Chief Executive. The
remuneration of key management personnel was as follows:
Aggregate compensation|**2024**
**Number**
11
**2024**
**£**
443,630
38,517
29,599
511,746
**2024**
**Number**
-
-
1
**2024**
**£**
103,973|**2023**
**Number**
15|
|---|---|---|
|||**2023**
**£**
582,919
54,827
38,059|
|||675,805|
|||**2023**
**Number**
2
1
-|
|||**2023**
**£**
102,758|
The charity considers its key management personnel to be the board of trustees and the Chief Executive. The remuneration of key management personnel was as follows: Aggregate compensation
## 12. Gains and losses on investments
||**Unrestricted**|**Unrestricted**|
|---|---|---|
||**funds**|**funds**|
||**2024**|**2023**|
|Gains/(losses) arising on:|**£**|**£**|
|Revaluations of investments|39,212|(46,637)|
## 13. Taxation
The charity is exempt from taxation on its activities because all its income is applied for charitable purposes.
## 14. Tangible fixed assets
|**Fixtures**
**Cost**
At 1 April 2023
Disposals
At 31 March 2024
**Depreciation and impairment**
At 1 April 2023
Depreciation charged in the year
Eliminated in respect of disposals
At 31 March 2024
**Carrying amount**
At 31 March 2024
At 31 March 2023|**and fttings**
**Ofce equipment and**
**furniture**
**£**
**£**
20,169
80,949
-
(77,773)
20,169
3,176
18,964
76,983
660
1,375
-
(75,271)
19,624
3,087
545
89
1,205
3,967|**Total**
**£**
101,118
(77,773)|
|---|---|---|
|||23,345|
|||95,947
2,035
(75,271)|
|||22,711|
|||634|
|||5,172|
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## 15. Fixed asset investments
|**Cost or valuation**
At 1 April 2023
Valuation changes
Disposals
At 31 March 2024
**Carrying amount**
At 31 March 2024
At 31 March 2023|**LIsted**
**Investments**
**£**
729,754
39,212
(364,000)|
|---|---|
||404,966|
||404,966|
||729,754|
## 16. Debtors
|**Amounts falling due within one year:**
Other debtors
Prepayments and accrued income|**2024**
**£**
32,451
37,596
70,047|**2023**
**£**
41,942
29,788|
|---|---|---|
|||71,730|
## 17. Creditors: amounts falling due within one year
|Other taxation and social security
Trade creditors
Other creditors
Accruals and deferred income|**2024**
**£**
10,562
30,885
169,270
65,192
275909|**2023**
**£**
27,523
31,193
61,828
11,100|
|---|---|---|
|||131644|
## 18. Retirement benefit schemes
||**2024**|**2023**|
|---|---|---|
|**Defned contribution schemes**|**£**|**£**|
|Charge to proft or loss in respect of defned contribution schemes|29,599|38,059|
The charity operates a defined contribution pension scheme for all qualifying employees. The assets of the scheme are held separately from those of the charity in an independently administered fund.
## 19. Endowment funds
Endowment funds represent assets which must be held permanently by the charity. Income arising on the endowment funds can be used in accordance with the objects of the charity and is included as unrestricted income. Any capital gains or losses arising on the assets form part of the fund.
|**Permanent endowments**
Philip Morris Art Award
Howard Abrahams Memorial Award
**Previous year**
**Permanent endowments**
Philip Morris Art Award
Howard Abrahams Memorial Award|**At 1 April**
**2023**
**£**
7,500
7,800
15,300
**At 1 April**
**2022**
**£**
7,500
7,500
15,000|**Incoming**
**resources**
**£**
-
-
-
**Incoming**
**resources**
**£**
-
300
300|**At 31 March**
**2024**
**£**
7,500
7,800|
|---|---|---|---|
||||15,300|
||||**At 31 March**
**2023**
**£**
7,500
7,800|
||||15,300|
Philip Morris Art Award: This award is open to students with haemophilia or related bleeding disorders studying the arts. Preference will be given to a student studying music, as a reflection of Philip’s love of music developed in later life.
Howard Abrahams Memorial Award: This is a bursary awarded to an individual with haemophilia or related bleeding disorders in pursuit of one of the professions or study relating to a profession. This award has been made possible by the Abrahams family in memory of their son.
## 20. Restricted funds
The restricted funds of the charity comprise the unexpended balances of donations and grants held on trust subject to specific conditions by donors as to how they may be used.
||**At 1 April**|**Incoming**|**Resources**|**Transfers**|**At 31 March**|
|---|---|---|---|---|---|
||**2023**|**resources**|**expended**||**2024**|
||**£**|**£**|**£**|**£**|**£**|
|Talking Red|19,218|30,000|(5,828)|-|43,390|
|Tanner Fund|64|-|-|-|64|
|Newly Diagnosed|-|15,000|(22,257)|7,257|-|
|Ambassadors|21,000|10,000|(14,423)|-|16,577|
46
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## 20. Restricted funds (continued
|Booklets
Covid Survey
Centre Engagement
Local Groups
Mental Health Training
Haemfest
Community Matters Magazine
Information Days
WFH Congress
Philip Morris Art Award
Howard Abrahams Memorial Award
VWD Event
**Previous Year**
Talking Red
Tanner Fund
Memorial Service
Newly Diagnosed
Ambassadors
Booklets
Covid Survey
Youth Camps
Centre Engagement
Patient Experience Survey
Local Groups
Mental Health Training
Emergency Fund (Ukraine)
Haemfest
Community Matters Magazine
Information Days
WFH Congress
Cut the Cap
Philip Morris Art award
Howard Abrahams Memorial Award|**At 1 April**
**2023**
**£**
29,886
950
16,706
9,482
1,562
-
-
3,128
4,313
7,971
3,792
-
118,072
**At 1 April**
**2022**
**£**
-
514
-
2,106
-
2,266
950
21,932
16,960
5,000
9,961
1,562
2,241
-
-
-
-
-
7,278
4,086
74,856|**Incoming**
**resources**
**£**
6,000
-
-
794
-
5,140
-
-
35,757
-
-
300
107,587
**Incoming**
**resources**
**£**
22,357
-
644
34,000
21,000
34,000
-
16,588
-
-
-
-
1,171
420
6,000
15,000
15,000
25,000
693
706
194,016|**Resources**
**expended**
**£**
-
-
-
(1,417)
-
(11,690)
(12,976)
(1,225)
(8,365)
-
-
-
(96,321)
**Resources**
**expended**
**£**
(388)
(1,450)
(644)
(36,106)
-
(6,380)
-
(25,520)
(254)
(5,000)
(479)
-
(3,412)
(13,420)
(6,000)
(11,872)
(10,687)
(25,000)
-
-
150,800|**Transfers**
**£**
-
-
-
-
-
6,550
12,976
-
-
-
-
-
40,328
**Transfers**
**£**
-
1,000
-
-
-
-
-
(13,000)
-
-
-
-
-
13,000
-
-
-
-
-
(1,000)
-|**At 31 March**
**2024**
**£**
35,886
950
16,706
8,859
1,562
-
-
1,903
31,705
7,971
3,792
300|
|---|---|---|---|---|---|
||||||169,666|
||||||**At 31 March**
**2023**
**£**
21,969
64
-
-
21,000
29,886
950
-
16,706
-
9,482
1,562
-
-
-
3,128
4,313
-
7,971
3,792|
||||||118,072|
## 20. Restricted funds (continued
Talking Red: Talking Red includes all our work for women with bleeding disorders including an awareness campaign and services for those with a diagnosis.
Tanner Fund: A hardship fund providing grants of up to £200.
Memorial Service: Funds held for the administration of an annual service of Thanksgiving and Remembrance in London for those who died as a result of contamination of blood products in the 1970s and 1980s.
Newly Diagnosed: Fund to support our services and events for families with a newly diagnosed child with a bleeding disorder.
Ambassadors: Fund to support Youth Ambassadors, who are volunteer advocates for the charity, to receive training, attend events and services and support the development of THS’s work and strategy.
Booklets: Funding for productions of information booklets and transition to other languages. Covid Survey: Funding to carry out pre & post Covid survey. Youth Camps – Funding to organise Youth camps to help children and young people to develop independence, by taking part in new experiences and challenges where they will also participate in sessions which focus on learning to self-treat.
Centre Engagement: Funding to help with reengagement with Haemophilia Centres.
Patient Experience: Funding to develop and carry out survey to investigate patient experiences of rare bleeding disorders with the aim of identifying areas in which patients can receive greater support.
Local Groups: Funding to support development and launch of local groups around the UK to support the activities of THS and haemophilia Centres.
Mental health training for staff: funding for mental health staff training.
Emergency Fund (Ukraine): help to provide crucial support to those in need during ongoing conflict and humanitarian crisis in Ukraine.
Haemfest: A camping weekend for families with bleeding disorders.
Community Matters Magazine: formerly titled HQ, the biennial magazine for our members.
Information Days: a series of educational days for Talking Red, Von Willebrand’s Disorder, Rare and bleeding Disorders of Unknown Cause and Haemophilia Live. WFH (World Federation of Haemophilia) Congress: participation at the biennial international congress which in 2022 took place in Montreal, Canada.
Cut the Cap: a restricted grant from CSL Behring to create a digital awareness campaign.
Philip Morris Art Award: This award is open to students with haemophilia or related bleeding disorders studying the arts. Preference will be given to a student studying music, as a reflection of Philip’s love of music developed in later life.
Howard Abrahams Memorial Award: This is a bursary awarded to an individual with haemophilia or related bleeding disorders in pursuit of one of the professions or
study relating to a profession. This award has been made possible by the Abrahams family in memory of their son.
## 21. Unrestricted funds
The unrestricted funds of the charity comprise the unexpended balances of donations and grants which are not subject to specific conditions by donors and grantors as to how they may be used. These include designated funds which have been set aside out of unrestricted funds by the trustees for specific purposes.
|Local groups
Designated funds - Public inquiry
Designated funds - Liquidation fund
General funds
**Previous year**
Local groups
Designated funds - Public inquiry
Designated funds - Liquidation fund
General funds|**At 1 April**
**2023**
**£**
54,345
78,249
168,733
381,109
682,436
**At 1 April**
**2022**
**£**
58,660
185,850
337,465
465,838
1,047,813|**Incoming**
**resources**
**£**
-
-
-
443,066
443,066
**Incoming**
**resources**
**£**
114
-
-
599,359
599,473|**Resources**
**expended**
**£**
-
-
-
(846,375)
(846,375)
**Resources**
**expended**
**£**
(4,429)
(107,601)
-
(806,183)
918,213|**Transfers**
**£**
-
-
-
(40,328)
(40,328)
**Transfers**
**£**
-
-
(168,732)
168,732
-|**Gains and**
**losses**
**£**
-
-
-
39,212
39,212
**Gains and**
**losses**
**£**
-
-
-
(46,637)
(46,637)|**At 31 March**
**2024**
**£**
54,345
78,249
168,733
(23,317)|
|---|---|---|---|---|---|---|
|||||||278,010|
|||||||**At 31 March**
**2023**
**£**
54,345
78,249
168,733
381,109|
|||||||682,436|
A transfer of £40,328 has been made to reflect costs funded from unrestricted reserves
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Annual Report and financial statement 2023/24
Annual Report and financial statement 2023/24
## 21. Unrestricted funds (continued)
THS is represented throughout the country by local groups. Group funds are incorporated into THS’s financial statements.
Designated funds - Public inquiry: Recognising the significant financial and general resource impact of the current public inquiry into infected blood, in 2019 the board designated
£600,000 of reserves to fund the charity’s work on the Inquiry. We participate in the Inquiry and support and inform members of the communicated affected by the Inquiry. Designated funds are reviewed annually and where the duration of the Inquiry is shortened or such amounts of expenditure are not required we will release relevant Designated Funds back in to General Unrestricted Funds.
Designated funds - Liquidation fund: Recognising the impact of Covid on charity income the board has designated funds to provide sufficient cover for at least 3 months of running costs.
## 22. Analysis of net assets between funds
|**At 31 March 2024:**
Tangible assets
Investments
Current assets/(liabilities)
**At 31 March 2023:**
Tangible assets
Investments
Current assets/(liabilities)|**Unrestricted**
**funds**
**2024**
634
389,666
(112,290)
278,010
**Unrestricted**
**funds**
**2024**
**£**
5,172
714,454
(37,190)
682,436|**Restricted**
**funds**
**2024**
**£**
-
-
169,666
169,666
**Restricted**
**funds**
**2024**
**as restated**
**£**
-
-
118,072
118,072|**Endowment**
**funds**
**2024**
**£**
-
15,300
-
15,300
**Endowment**
**funds**
**2024**
**£**
-
15,300
-
15,300|**Total**
**2024**
**£**
634
404,966
57,376|
|---|---|---|---|---|
|||||462,976|
|||||**Total**
**2024**
**as restated**
**£**
5,172
729,754
80,882|
|||||815,808|
## 25. Cash generated from operations
|25. Cash generated from operations|||
|---|---|---|
|Defcit for the year
Adjustments for:
Investment income recognised in statement of fnancial activities
Prior period adjustment
Loss on disposal of tangible fxed assets
Fair value gains and losses on investments
Depreciation and impairment of tangible fxed assets
Movements in working capital:
Decrease in debtors
Increase in creditors
**Cash absorbed by operations**|**2024**
**£**
(338,437)
(23,473)
-
2,502
(39,212)
2,035
1,683
130,224
(264,678)|**2023**
**as restated**
**£**
(321,861)
(24,891)
(30,938)
-
46,637
6,053
19,206
42,738|
|||(263,056)|
## 26. Analysis of changes in net funds
The charity had no material debt during the year.
## 23. Operating lease commitments
## **Lessee**
At the reporting end date the charity had outstanding commitments for future minimum lease payments under non-cancellable operating leases, which fall due as follows:
|Within one year
Between two and fve years|**2024**
**£**
24,649
3,145
27,794|**2023**
**£**
42,771
26,798|
|---|---|---|
|||69,569|
## 24. Related party transactions
The charity received no donations from trustees during the period (2023 - one trustee £652). There were no further disclosable related party transactions during the year (2023 - none).
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Annual Report and financial statement 2023/24
Annual Report and financial statement 2023/24
For more information, please visit our website haemophilia.org.uk or contact us on 020 7939 0780 or email info@haemophilia.org.uk
If you would like this information in a different format, such as audio tape, braille or large print, or in another league , please speak to our team on 020 7939 0708.
The Haemophilia Society 52b Borough High Street London SE1 1XN Phone: 020 7939 0780 Email: info@haemophilia.org.uk Web: haemophilia.org.uk
HaemophilaSocietyUK HaemoSocUK thehaemophiliasociety
Registered charity no. 288260 (Scotland SCO39732) Company limited by guarantee reg. no. 1763614
Members of the European Haemophilia Consortium and the World Federation of Hemophilia
Chair: Clive Smith Clive@haemophilia.org.uk President: Baroness Meacher
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# Together for life
© The Haemophila Society 2024