Company limited by guarantee reg. no. 1766314
**Annual Report and financial statement 2022/23**
## **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 Chief Executive and 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**
- **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 Our governance**
- **18 Administration & legal details**
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**Annual Report and financial statement 2022/23**
## **Welcome**
The last financial year was one in which the charity sector continued to feel the after-effects of the pandemic combined with the cost-of-living crisis impacting income, and inflation adding to costs.
In spite of these challenges the Haemophilia Society (THS) continued to deliver free services to members
including new events focused on von Willebrand disorder (VWD) and rare bleeding disorders, Haemophilia Live and HaemFest, a weekend of camping in Derbyshire. We were also pleased to offer free to members our annual women and girl-focused Talking Red Live event, Newly Diagnosed Weekends and Youth Camp, all of which were over-subscribed. We represented the UK bleeding disorder
community on the global stage at the World Federation of Hemophilia’s Congress in Canada, the first in-person congress since the UK hosted the WFH in Glasgow in 2018. The UK has representatives on the European Haemophilia Consortium’s (EHC) VWD disorder and Youth committees and we attended the EHC annual conference in Denmark. The war in Ukraine has touched so many of us, and we were proud to provide financial support to the Duisburg Haemophilia Centre in Germany, which was supporting a large number of displaced families with bleeding disorders in desperate need of treatment.
Nationally we represented the community’s interests as part of the working party that has started the process to review the NHS national service specification, which aims to improve the standards of care for all people living with bleeding disorders.
We have developed a major new campaign to assess the provision of service and care for women and girls across the UK.
We’re encouraged by progress in bringing gene therapy in both haemophilia A and B to the market, with significant steps being made globally. We, alongside many of our members who have been involved in research, will continue to work with the organisations involved in supplying, commissioning
and delivery of gene therapy to ensure it will be available as a treatment option in the UK in the near future.
Six years after the Infected Blood Inquiry was announced, an important milestone was reached when the hearings came to an end in February 2023. The payment of interim compensation in October 2022 to those registered on UK support schemes was an important step forward, but there is much to do in ensuring full compensation is paid to everyone infected and affected by the contaminated blood scandal. THS continues to offer its full support to those impacted until justice is delivered, and beyond.
As we look forward to 2024, the 60th anniversary of THS being granted charitable status, we do not take for granted your support and that of the staff team and our board of trustees, without whom none of our work goes on.
Thank you.
Clive Smith Kate Burt Chair Chief Executive
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Annual Reportandflnaneialstatement 2022123
Impact
Statistics
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Our membership
8/
increase in
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Our onllne Community
12.000
Our resources
booklets
sent out
followers on social media
3600
120.360
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1.079
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Our events
6000
video views
640
people supported
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7.2/
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**Annual Report and financial statement 2022/23**
## **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.**
## **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.
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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Matthew at Youth
Camp 2022
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- **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.
- **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.
**‘THS’s conference in November 2019 was where I met one of my best friends, who also has haemophilia. We’ve been at Youth Camp together since and now keep in touch online and we enjoy sleepovers.’**
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.
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**Annual Report and financial statement 2022/23**
## **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.**
members on developing the next generation of Youth Ambassadors.
**‘All the Youth Ambassadors, but especially Jess, spoke beautifully and passionately about how the condition brought something to their lives instead of taking something away.’** A parent who attended our Newly Diagnosed Weekend in Essex, September 2022
We were pleased to announce the formation of our Youth Board, made up of six senior Youth
Ambassadors, all with a bleeding disorder, who will ensure that our strategies and initiatives are relevant, inclusive and responsive to the needs of young people within our community. The board is chaired by Ross Bennett, who has severe haemophilia B. They will also continue to mentor younger Youth Ambassadors as well as our youth community.
Meanwhile, our annual Youth Camp, which is free to members, took place in Surrey in July 2022 and was attended by 44 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.
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.
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.
Our Youth Ambassadors also regularly attend global conferences, such as this year’s World Federation of Hemophilia’s Congress in Montreal, to share their experiences, helping them to build their skills to become advocates for themselves and our community.
This year we’ve been thinking about how to ensure the voices and experiences of young people are reflected in the work of our charity, while also working with younger
As always, our feedback was excellent from Youth Camp 2022, from both the young people themselves and their parents or guardians.
**‘Both girls agreed that camp was amazing! They had lots of fun making memories and being with lots of people who are living with haemophilia which helped them see that there are others in this world living with the same condition as their brother.’** Kirsty, mum of Phoebe and Scarlett, pictured right.
**‘Youth Ambassador Ross helped me realise that my son can live a fun and normal life and do stuff that other boys can, just with a little more planning.’** A parent who attended our Newly Diagnosed Weekend in Essex, September 2022
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**Annual Report and financial statement 2022/23**
## **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, 640 adults and children registered to attend one of 11 in-person events held in nine locations across the UK. This is a 42% increase on last year, reflecting our focus on trying to attract a greater range of people to our events by holding them in locations around the UK.
## **Information Days**
**‘I felt like my voice was heard and nothing was judged or dismissed. It was very helpful to just ‘vent’, almost, to express this new side of my life.’**
Feedback from our Rare and BDUC information day
**‘The separate conference made me feel VWD is important. I was pleased with all the information we got during the day and enjoyed the opportunity to meet other people with VWD.’**
Feedback from an attendee of our VWD Information Day in Southampton
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HaemFest 2022
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Rare and BDUC information day 2023
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Following feedback from our members, in 2022-23 we held a series of information days dedicated to a specific bleeding disorder and rarer conditions.
The first information day focused on von Willebrand disorder (VWD) and was held in Southampton. Participants told us that they enjoyed the chance to talk about the specific issues relating to VWD and a clinician’s presentation on dental care was particularly well received.
We held our second information day on rare bleeding disorders and bleeding disorders of unknown cause
(BDUC) in London. Over 15,000 people have a rare bleeding disorder or a BDUC. This was the first event of its kind in the UK to bring this community together to discuss treatment, care and personal experiences. We were pleased to welcome a representative from the European Haemophilia Consortium (EHC) who told us about the organisation’s work in this area.
Our third dedicated event, Haemophilia Live in Nottingham, focused on haemophilia and featured sessions on shared decision making as well as treatment updates and a chance to swap experiences.
## **Talking Red Live**
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 Oxford, and featured updates on pregnancy and childbirth and gave members the chance to share their journey living as a woman with bleeding disorders in workshops. 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. We also used this event to launch our SACRed project, a major new project which focuses on women’s treatment and care. You can read more about this in the advocacy section of this report.
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Talking Red Live 2023
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**Growing up, the idea of a woman with a severe bleeding disorder was considered a novelty by people I met and even some doctors, and that was often isolating. Talking Red Live is a unique opportunity for women to come together and share our lived experiences and challenges; something I had never done before in 40 years of having von Willebrand disorder!”**
Anna, pictured above, THS trustee and attendee of Talking Red Live
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**Annual Report and financial statement 2022/23**
## **Haemfest**
In June 2022 we held our first HaemFest, a camping event, free to members, in Derbyshire. We wanted to offer an event to bring together our members in an informal 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, yoga, bellydancing and a popular arts and crafts tent. On Saturday evening we came together to enjoy some lively Irish dancing.
**‘Jacob’s inspiration for fundraising for THS came from attending HaemFest and wanting to make sure that all children with bleeding disorders could have access to such fun events.’**
Nicola, Jacob’s mum.
## **Newly Diagnosed Weekends**
**‘We attended the NDW in July 2022 with some hesitation and fear around it bringing back up all our emotions when we first learnt our son had haemophilia. However, it turned out to be exactly what we needed! Being surrounded by other families who understood what we had been through and sharing our stories really made us not feel alone. It gave us a real sense of togetherness. THS put on such a professional and informative event while creating a relaxed environment where you felt you could be open and honest. It is a weekend we are truly thankful for and one we didn’t know we needed as a family!’**
Ian, who attended NDW with his partner Danielle and son Ryan.
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 three NDWs this year, reaching 29 families. We were pleased to join up with Haemophilia NI to host one event in Limavady, and the other two took place in Bolton, Greater Manchester and Brentwood, Essex.
Feedback from the events shows that 95% of parents attending our NDWs feel more confident and empowered about making decisions related to their child’s treatment and well-being.
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Ian, Danielle and Ryan at our NDW
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**Annual Report and financial statement 2022/23**
## **Service of Remembrance & Thanksgiving**
We are honoured to host this important annual event for 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 reaching the end of its hearings, 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.
## **Publications and educational materials**
This year we produced nine booklets and eight downloadable factsheets. We sent out 3,600
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. Last year 1,079 factsheets or booklets were downloaded from our website.
## **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 nonmembers who work locally, giving us an opportunity to increase awareness about our work to a new audience. We are proud of our long-standing 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.
## **This year we offered the following free publications:**
- 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
## **We offered the following downloadable factsheets:**
- DLA
- PIP Making a claim (Disability Living Allowance)
- PIP Assessment process
- Emicizumab (for people without an inhibitor)
- Emicizumab (for people with an inhibitor)
- Extended half-life (EHL) factor VIII
We have also collaborated with companies Cor 2 Ed and AKT to help produce videos about the reality of living with a bleeding disorder. One video focused on three generations of women living with a bleeding disorder and the other looked at the impact of growing up with haemophilia. We are grateful to our members who took part in these videos which do so much to raise awareness about living with a bleeding disorder.
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Adam filming an AKT
awareness video.
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- Top tips for parents
- Patient checklist to prepare for virtual consultations
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**Annual Report and financial statement 2022/23**
## **Standards of Care**
The specialised blood disorders Clinical Reference Group (CRG) was reconstituted this year and THS was successful in our application to be one of the two patient representatives on the group. The CRG works with NHS England to coordinate specialist care for people with bleeding disorders and leads on the development of new treatment policies and service specifications.
It was announced that next year we will have the opportunity to review the Service Specification, which has not been updated since 2013, which details the care that should be delivered by haemophilia centres. This is an opportunity to make sure people with bleeding disorders can expect all aspects of care they need in all centres across the country and we can ensure people can live their best life with a bleeding disorder.
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 and access to new treatments. This year we made submissions to the NICE review of Hemgenix which is a proposed gene therapy treatment option for haemophilia B. We also bring the voice of people with a bleeding disorder to the changes to tender frameworks for current treatments and any license extensions, this ensures that other factors beyond price, such as ease of use, are considered when
choosing products for supply to haemophilia centres. This year NHS England began the tender process to select sites across the country to deliver gene therapies if and when they are recommended by NICE for routine commissioning. We are part of the review group that will consider applications and choose which centres are best placed to lead on delivering these innovative new treatments.
We are members of NHS England’s Specialised Commissioning Stakeholder Forum which allows use to raise wider issues with how NHS treatment and care is commissioned and delivered across England.
We also work with the Haemophilia Nurses Association (HNA), the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) and the Haemophilia Chartered Physiotherapists’ Association (HCPS) to ensure we are across all aspects of haemophilia and bleeding disorder care.
This year we launched the SACRed Project, a multiyear investigation into the experiences of women and girls with bleeding disorders that will make recommendations for improving standards of care and access to treatment. The report will be published in November 2024. We are grateful to Octapharma, LFB, Sobi, Takeda and Roche who are sponsoring this project.
## **Advocacy**
## **Raising Awareness**
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.
An important part of our role is to ensure that people outside our community understand accurately the reality of living with a bleeding disorder. We answer a large number of media inquiries, many relating to the Infected Blood Inquiry, but also about the latest treatments and issues relating to quality of care. In January 2023 the BBC’s popular Call the Midwife series ran an episode about a baby born with haemophilia. Our medical trustee, Natalie Lawson, who is a paediatric haemophilia nurse, acted as consultant for the programme, which resulted in a huge spike in google searches for ‘haemophilia’ during the episode and doubled our website traffic. Exposure to such a mainstream programme was a very effective way of raising awareness about haemophilia and we’re grateful for the sensitive and thorough way the issue was handled.
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**Annual Report and financial statement 2022/23**
## **Infected Blood Inquiry**
**‘Huge thanks to the Haemophilia Society for providing a summary of evidence throughout the statutory public inquiry. I, for one, have greatly appreciated your summarised, unbiased reporting.’**
Comment from our dedicated public inquiry Facebook page
Our Public Inquiry Team has continued to support those infected and affected by the contaminated blood scandal and kept our members up to date with the work of the Infected Blood Inquiry. We have a dedicated public inquiry Facebook page where we update members about the inquiry’s evidence or any other related developments.
This marked an important year for the inquiry, which concluded its oral hearings in February 2023 and published its first interim report on compensation in August 2022. This was implemented by the government and resulted in interim payments of £100,000 to people registered on Infected Blood Support Schemes in England, Scotland, Northern Ireland and Wales in October 2022.
As a result of the interim compensation scheme, a number of people have come forward with queries about their eligibility for the UK’s support schemes. Our Public Inquiry Team has supported many members, particularly bereaved partners, who did not realise they could apply for the scheme and have since been accepted.
We continued to press for compensation to be extended to bereaved parents and children. Our Chair, Clive Smith was part of a delegation to 10 Downing Street in the Summer of 2022 calling for the compensation criteria to be widened. We, along with other campaigners, protested outside Parliament in November 2022 in advance of a debate in Westminster Hall on the issue of compensation.
Our Chief Executive, Kate Burt and Clive Smith were interviewed extensively for national and regional print and broadcast media on the issues of interim compensation and the end of the inquiry’s hearings.
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Clive Smith, THS Chair,
delivers a letter to the
Prime Minister
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## **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 two fringe events on the challenges facing the NHS and what they mean for people with rare diseases.
There was also an opportunity for Jeff Courtney, our Policy and Public Affairs Manager, to discuss key issues, such as compensation for people infected and affected by the contaminated blood scandal and inequalities in health provision.
In Parliament, our Chief Executive, Kate Burt addressed a meeting on novel treatments and future gene therapy and we were pleased to host in a roundtable event which discussed how we deal with the major problems faced by people with bleeding disorders in accessing full multidisciplinary care, particularly physiotherapy. We continue to campaign for full multidisciplinary care for people with bleeding disorders at all haemophilia centres across the UK.
In addition, the Haemophilia Society provides a secretariat service to the All Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood. In this role we maintain the membership information of the APPG and facilitate meetings of the group in conjunction with the chairs.
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**Annual Report and financial statement 2022/23**
## **Global Connections**
THS values and constantly seeks to strengthen our links with fellow haemophilia and bleeding disorder associations around the world. It is truly saddening how stark the disparities are in treatment provision between nations. We recognise how fortunate we are to live in a country where we can expect to receive the latest treatment and acknowledge our responsibility to support our colleagues and people with bleeding disorders around the world who do not have the choices we enjoy.
We are proud to continue to support WFH’s Cornerstone Project which aims to close the gap in treatment by providing support, expertise and training to countries with minimal levels of care.
The war in Ukraine sparked a crisis in Europe, which has also had an impact on our bleeding disorders community. This year we were proud to support a major haemophilia treatment centre in Duisberg, Germany, with a grant of £10,000 to help it accommodate Ukrainian children and adults with a bleeding disorder displaced by the war who were in urgent need of treatment and care.
We attended major global conferences including the WFH’s Congress in Montreal and the European Haemophilia Consortium’s (EHC) new technologies
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.
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THS at the International Society
of Thrombosis and Haemostasis
(ISTH) in London.
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**Annual Report and financial statement 2022/23**
## **How we manage your money**
## **Income Composition 2022-23**
**Charitable activities & Expenditure 2022-23**
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**Annual Report and financial statement 2022/23**
## **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.**
## **Events**
Thank you to everyone who walked, ran, cycled, swam, sky dived, played golf, baked and undertook many other challenges to raise funds for THS. We are very grateful for all that you do.
## **Corporate Partners**
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 CSL Behring, Novo Nordisk, RocheChugai, Sanofi, SOBI, Pfizer, LFB and Takeda for their support in 2022 – 2023 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 there are strict guidelines relating to donations from pharmaceutical companies to health organisations which we adhere to at all times.
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The Big Red Bridge Walk, Glasgow
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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 27 of the 2019 ABPI code, all pharmaceutical companies must declare their sponsorship of ‘patient organisations’, which is how THS is classed under the code.
## **National haemophilia charities**
We are grateful for the productive relationships we have with the national haemophilia charities in Scotland and Northern Ireland. This year we collaborated with Haemophilia NI to hold a Newly Diagnosed Weekend in Limavady and joined Haemophilia Scotland on its Big Red Bridge Walk. We also liaise with both organisations to maximise advocacy, particularly in relation to issues arising from the Infected Blood Inquiry’s work.
## **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.
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**Annual Report and financial statement 2022/23**
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Ravi volunteering at
Youth Camp 2022
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## **Volunteers**
**‘Volunteering for the Haemophilia Society was a truly enriching experience, allowing me to make a meaningful difference in the lives of individuals affected by this condition. The connections I forged and the positive impact I witnessed made it a rewarding journey that I will always cherish.’** Ravi, Youth Camp volunteer
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.
**‘Being a THS trustee has given me a world of experience outside of my normal background. Coming from Northern Ireland I wanted to give the regions a voice and have been able to work with both local and UK governments on a range of issues. Most important are the community connections I’ve made and friends I now value and can always rely on.’**
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.
Conan, THS Trustee
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THS trustee Conan
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## **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.
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Youth Camp
2022
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**Annual Report and financial statement 2022/23**
## **A big thank you**
## **Together, we continue to work to improve the lives of everyone with a genetic bleeding disorder and their families.**
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 contribution from our partners, large or small, makes everything that we do possible.
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.
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Newly Diagnosed
Weekend, Bolton,
July 2022
HaemFest 2022
HaemFest 2022
HaemFest 2022
Youth Camp 2022
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**Annual Report and financial statement 2022/23**
## **Our governance**
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**
## **Who we are**
**President** Baroness Meacher **Honorary Vice President** Dr Kate Khair **Chief Executive** Kate Burt
**Board of Trustees** Clive Smith – Chair Conan McIlwrath – Vice Chair Susan Stretch – Vice Chair Gordon Dixon – Treasurer Sonia O’Hara (resigned 19 November 2023) Paul Sartain Joanne Traunter Anna Geffert (resigned 19 November 2023) Amy Owen-Wyard Rayaz Ali Chel Joshua Natalie Lawson Lisa Bagley (appointed 19 November 2023) Stacey McGeown (appointed 19 November 2023)
**18**
**Annual Report and financial statement 2022/23**
|**Subcomittees**||
|---|---|
|Finance and Risk Committee|Gordon Dixon – Chair|
||Clive Smith|
||Conan McIlwrath|
||Susan Stretch|
||Rayaz Ali Chei|
|Nominations Committee|Gordon Dixon|
||Clive Smith|
|Public Inquiry Committee|Clive Smith – Chair|
||Conan McIlwrath|
||Susan Stretch|
||Paul Sartain|
||Eileen Ross|
||Barry Flynn|
|Clinical Advisory Group|Dr Rezan Abdul-Kadir|
||Dr Susie Shapiro|
||Dr Kate Khair|
||Prof Mike Laffan|
||Andrew Martin|
||Debra Pollard|
||David Stephenson|
||Musrat Pinnu|
|Company Secretary|Paul Sartain|
|Bankers|Natwest Bank|
||London Bridge|
||PO Box 35|
||10 Southwark Street|
||London|
||SE1 1TJ|
|Solicitors|Eversheds Sutherland|
||1 Wood Street|
||London|
||EC2V 7WS|
|Auditors|Azets Audit Services|
||2nd Floor, Regis House|
||45 King William Street|
||London|
||EC4R 9AN|
|Company registration number|01763614|
|Charity registration number|288260|
|Scottish charity registration number|SC039732|
**19**
**Annual Report and financial statement 2022/23**
## **Trustees’ report**
The trustees present their report and the audited financial statements of the charity for the year ended 31 March 2023. 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, provisions of the Charities Act 2022 in force at the time of preparing these accounts 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**
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 Sonia O’Hara (resigned 19 November 2023) Paul Sartain Joanne Traunter Anna Geffert (resigned 19 November 2023) Amy Owen-Wyard Rayaz Ali Chel Natalie Lawson Lisa Bagley (appointed 19 November 2023) Stacey McGeown (appointed 19 November 2023)
## **Financial review**
The charitable sector continues to be hit hard by the cost-of-living crisis and fall-out from changes in the way in which people fundraise following the Covid pandemic. THS, like many others, has felt the impact of this as our members feel the squeeze on their own budgets.
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
**20**
**Annual Report and financial statement 2022/23**
achieving diverse and reliable funding sources. To this end, we had to take some difficult decisions, making three staff posts redundant in March 2023 and not filling a vacancy left by a departing staff member.
We expect to reap the benefits of a long-term investment in a new platform to record data and organise information in the 2023/24 financial year. Much of this year has been 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.
Overall, we have generated a loss for the year of £277,975 (before the impact of the loss on investments), which resulted in a reduction of reserves.
Income (including legacies) for FY22-23 was £795,226 compared to £749,428 in the previous financial year. Legacy income received of £282,147 for FY22-23 has increased by 24% compared with the previous year (£227,459 in FY22). Given the unpredictable 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. Grants from Trusts & Foundations grew strongly in 2022-23 to £50,500 up from £14,050 in 2021-22. Corporate income has not recovered to pre pandemic levels, but still represented 22.2% of total income for the year.
The Infected Blood Inquiry continued this year and therefore so did our work to support our members and keep them up to date with inquiry evidence and related issues. This incurred costs of £107,601.
Through the European Haemophilia Consortium we supported the Duisburg Haemophilia Centre in Germany with a grant of £10,000 who are supporting a large number of families with bleeding disorders displaced through the conflict in Ukraine.
Overall costs in FY22-23 were £1,073,201. This is against a total income of £795,226, representing a deficit of £277,975 before net losses on investments.
## **Reserves**
THS reserves on 31/03/23 stood at £843,995, a decrease of £324,612 from the prior year, due to draw downs from investments.
The board of trustees made the decision to designate £168,733 to create a liquidation fund to cover three months of running costs. Previously the trustees designated the liquidation fund to be 6 months running costs but considered it prudent to amend this to be 3 months to mitigate the difficult economic environment.
The Haemophilia Society is currently developing a new three-year strategy to be published in early 2024.
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 spent £521,751 leaving a balance of £78,249 to cover costs until the end of the inquiry. Designated funds are reviewed annually to ensure the appropriate use of reserves.
**21**
**Annual Report and financial statement 2022/23**
As of 31 March 2023, unrestricted general reserves (excluding local group funds) stood at £628,091. As noted, the board of trustees continually
reviews potential opportunities to invest for the good of THS, while prudently managing reserves in an uncertain and unpredictable environment.
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. As at the end of FY22-23 our funds had a market value of £729,754.
## **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.
## **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 three-year term. They may stand again for election for a further three-year term and then must take at least one year’s break. One further three-year term as a trustee is permitted but having served nine years an individual may not stand for election or be co-opted to the board again.
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
**22**
**Annual Report and financial statement 2022/23**
in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
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
- 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
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 hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
## **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: 20 December 2023
**23**
**Annual Report and financial statement 2022/23**
## **Independent auditor’s report to the members of the Haemophilia Society**
## **Opinion**
We have audited the financial statements of The Haemophilia Society (the ‘charitable company’) for the year ended 31 March 2023 which comprise the statement of financial activities, the balance sheet, the statement of cash flows and the 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 2023 and of its incoming resources and application of resources, for the year then ended;
- have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, and
- have been prepared in accordance with the requirements of the Companies Act 2006.
## **Basis for opinion**
We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.
## **Conclusions relating to going concern**
In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.
Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the company’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
**24**
**Annual Report and financial statement 2022/23**
## **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 the audit:
- the information given in the trustees’ report, which includes the directors’ report for the financial year for which the financial statements are prepared 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 charitable company 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 requires us to report to you if, in our opinion:
- adequate accounting records have not been kept, or returns adequate for
- our audit have not been received from branches not visited by us; or
- the financial statements are not in agreement with the accounting records and returns; or
- certain disclosures of trustees’ remuneration specified by law are not made; or
- we have not received all the information and explanations we require for our audit; 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 directors’ report included within the trustees’ report and from the requirement to prepare a strategic report.
**25**
**Annual Report and financial statement 2022/23**
## **Responsibilities of trustees**
As explained more fully in the trustees’ responsibilities statement, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.
In preparing the financial statements, the trustees are responsible for assessing the charitable company’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charitable company or to cease operations, or have no realistic alternative but to do so.
## **Auditor’s responsibilities for the audit of the financial statements**
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.
A further description of our responsibilities is available on the Financial Reporting Council’s website at www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.
## **Extent to which the audit was considered capable of detecting irregularities, including fraud**
IIrregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above and on the Financial Reporting Council’s website, to detect material misstatements in respect of irregularities, including fraud.
We obtain and update our understanding of the entity, its activities, its control environment, and likely future developments, including in relation to the legal and regulatory framework applicable and how the entity is complying with that framework. Based on this understanding, we identify and assess the risks of material misstatement of the financial statements, whether due to fraud or error, design and perform audit procedures responsive to those risks, and obtain audit evidence that is sufficient and appropriate to provide a basis for our opinion. This includes consideration of the risk of acts by the entity that were contrary to applicable laws and regulations, including fraud.
In response to the risk of irregularities and non-compliance with laws and
**26**
**Annual Report and financial statement 2022/23**
regulations, including fraud, we designed procedures which included:
- Enquiry of management and those charged with governance around
- actual and potential litigation and claims as well as actual, suspected and alleged fraud;
- Reviewing minutes of meetings of those charged with governance;
- Assessing the extent of compliance with the laws and regulations considered to have a direct material effect on the financial statements or the operations of the company through enquiry and inspection;
- • Reviewing financial statement disclosures and testing to supporting documentation to assess compliance with applicable laws and regulations;
- Performing audit work over the risk of management bias and override
- of controls, including testing of journal entries and other adjustments for appropriateness, evaluating the business rationale of significant transactions outside the normal course of business and reviewing accounting estimates for indicators of potential bias.
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 noncompliance. The risk of not detecting a material misstatement resulting from fraud is higher than for one resulting from error, as fraud may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal control.
## **Use of our report**
This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.
John Howard (Senior Statutory Auditor) for and on behalf of Azets Audit Services Statutory Auditor 2nd Floor, Regis House 45 King William Street London EC4R 9AN
Date: 20 December 2023
**27**
**Annual Report and financial statement 2022/23**
## **Statement of financial activities (including income and expenditure account)**
## **Year ended 31 March 2023**
**28**
Annual Reportandflnaneialstatement 2022123
Balance sheet
Year ended 31 March 2023
2023
2022
Note
Fixed assets
Tangible assets
Investments
13
14
5,172
729,754
9,189
1,026,391
734,926
1,035,580
Current assets
Debtors
Cash at bank and in hand
15
71,730
140,796
90,936
130,997
212,526
221,933
Creditors: amounts falling due within one year
16
1103,4571
188,9061
Net current assets
109,069
133,027
Net assets
Charity funds
Endowment funds
Restricted funds
Unrestricted general funds
Local qroup funds
Designated funds
843,995
1,168,807
17
17
17
17
17
15,300
146,259
381,109
54,345
246,982
15,000
105,794
465,838
58,660
523,315
Total charity funds
18
843,995
1,168,607
The f inancial statements were approved and authorised for issue by the board on19 December 2023
Signed on behalf of the board of trustees
Clive Smith, Chair
Company registration number.. 01763614
**Annual Report and financial statement 2022/23**
## **Statement of cash flows**
## **Year ended 31 March 2023**
**30**
**Annual Report and financial statement 2022/23**
## **1. Summary of significant accounting policies**
## **(a) General information and basis of preparation**
The Haemophilia Society 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 on page 47 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.
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 Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102), the Companies Act 2006, the Charities Act 2011, 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 on a going concern basis under the historical cost convention, with the exception of investments which are disclosed at fair value. The financial statements are prepared in sterling which is the functional currency of the charity.
The significant accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied to all years presented unless otherwise stated.
## **(b) Funds**
Unrestricted general 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 Philip 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.
**31**
**Annual Report and financial statement 2022/23**
## **1. Summary of significant accounting (continued)**
## **(c) Income recognition**
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.
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).
## **(d) Expenditure recognition**
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:
- 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.
VAT is charged as an expense against the activity for which expenditure arose below.
## **(d) Support costs allocation**
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.
**32**
**Annual Report and financial statement 2022/23**
## **1. Summary of significant accounting (continued)**
The analysis of these costs is included in note 7 (page 36)
## **(f) Tangible fixed assets**
Tangible fixed assets for use by the charity are stated at cost less accumulated depreciation.
Depreciation is provided on all tangible fixed assets, at rates calculated to write off the cost, less estimated residual value, of each asset on a systematic basis over its expected useful life as follows:
Office equipment and furniture 25% per annum, straight line
## **(g) Investments**
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.
## **(h) Debtors and creditors receivable/payable within one year**
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.
## **(i) Impairment**
Assets not measured at fair value are reviewed for any indication that the asset may be impaired at each balance sheet date. If such indication exists, the recoverable amount of the asset, or the asset’s cash generating unit, is estimated and compared to the carrying amount. Where the carrying amount exceeds its recoverable amount, an impairment loss is recognised in profit or loss unless the asset is carried at a revalued amount where the impairment loss is a revaluation decrease.
## **(j) 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.
## **(k) Leases**
Rentals payable and receivable under operating leases are charged to the SoFA on a straight line basis over the period of the lease.
## **(l) Employee benefits**
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.
## **(m) 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.
**33**
**Annual Report and financial statement 2022/23**
## **1. Summary of significant accounting (continued)**
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.
## **(n) Tax**
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.
## **(o) Going concern**
The Trustees recognise that in the current economic climate, expenditure cannot continue as originally projected based on the income growth. In November 2022 a review commenced of our operating model. The cost base was restructured, removing £380,000 from expenditure from 1 April 2023. The Trustees have considered the level of funds held and the expected level of income and expenditure, together with execution of the mitigation plan 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.
## **2. Income from donations and legacies**
**34**
**Annual Report and financial statement 2022/23**
## **3. Income from charitable activities**
## **4. Income from investments**
## **5. Analysis of expenditure on raising funds**
**35**
**Annual Report and financial statement 2022/23**
## **6. Analysis of expenditure on charitable activities**
## **7. Allocation of support costs**
**36**
**Annual Report and financial statement 2022/23**
## **7. Allocation of support costs (continued)**
## **8. Governance costs**
## **9. Net income/ (expenditure) for the year**
**37**
**Annual Report and financial statement 2022/23**
## **10. Auditor’s remuneration**
## **11. Trustees and key management personnel remuneration and expenses**
## **12. Staff costs and employee benefits**
**38**
**Annual Report and financial statement 2022/23**
## **12. Staff costs and employee benefits (continued)**
## **13. Tangible fixed assets**
**39**
**Annual Report and financial statement 2022/23**
## **13. Tangible fixed assets (continued)**
## **14. Fixed asset investments**
## **15. Debtors**
**40**
**Annual Report and financial statement 2022/23**
## **16. Creditors: amounts falling within one year**
## **17. Fund reconciliation**
( )
**41**
Annual Report and finaneial statement 2022123
. Fund reconciliation (continued)
Restricted funds
Balance at
1st April
2022
Balance at
31st March
2023
Income
Expenditure
Transfers
Talking Red
Tanner Fund
Memorial Service
Newly Diagnosed
Ambassadors
Booklets
Covid Survey
Youth Camps
Centre Engagement
Patient Experience Survey
Local Groups
Mental health training for staff
Emergency Fund (Ukrainel
Little Bleeders
Heamlest
Community Matters Magazine
Information Oays
WFH Congress
Cut the Cap
Philip Morris Art Award
Howard Abrahams Memorial
Award
23,794
14,5761
11,4501
16441
136,1061
19,218
514
I,ODO
644
34,000
21,000
34,000
2,106
21,000
29,886
950
2,266
950
21,932
16,960
5,000
9,961
1,562
2,241
30,938
16,3801
16,588
125,5201
12541
15,0001
14791
113,0001
16,706
9,482
1,562
1,1
1,437
420
6,000
15,000
15,000
25,000
693
706
13,4121
14,1881
113,4201
16,0001
111,8721
110,B871
125,0001
28,187
13,000
3,128
4,313
7,278
4,086
7,971
3,792
11,0001
105,794
195,453
1154,9881
146,259
Endowment Funds
Balance at
1st April
2022
Balance at
31st March
2023
Income
Expenditurè
Transfers
Philip Morris Art Award
Howard Abrahams Memorial
Award
7,500
7,500
7,500
7,800
300
15,000
300
15,300
**Annual Report and financial statement 2022/23**
## **Fund descriptions**
## **a) Unrestricted funds**
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, support and inform members of the community affected by the Inquiry. Designated funds will be 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 into General 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.
## **b) Restricted funds**
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 translation 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.
**43**
**Annual Report and financial statement 2022/23**
## **Fund descriptions (continued)**
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.
The Haemophilia Society has a partnership with Little Bleeders charity to administer their income and expenditure.
Haemfest: a camping weekend for families with bleeding disorders.
Community Matters: formerly titled HQ, the bi annual 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.
World Federation of Hemophilia 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
## **c) Endownment funds**
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.
Donations and interest earned on these funds are credited to the relevant restricted fund.
**44**
**Annual Report and financial statement 2022/23**
## **18. Analysis of net assets between funds**
## **19. Reconciliation of net expenditure to net cash flow**
## **20. Pensions and other post-retirement benefits**
**45**
**Annual Report and financial statement 2022/23**
**Annual Report and financial statement 2022/23**
## **21. Financial commitments**
## **22. Related party transactions**
**46**
**Annual Report and financial statement 2022/23**
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 HaemophilaSocietyUK 52b Borough High Street HaemoSocUK London SE1 1XN thehaemophiliasociety Phone: 020 7939 0780 Email: info@haemophilia.org.uk
Web: haemophilia.org.uk
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
**47**
# **Together for life**
© The Haemophila Society 2023