# **2025-26 ANNUAL REPORT**
Haemophilia Scotland is a Scottish Charitable Incorporated Organisation (SCIO) Charity Number: SC044298
**Supporting people in Scotland living with or affected by a bleeding disorder**
0845 874 4004 www.haemophilia.scot hello@haemophilia.scot
Haemophilia Scotland The Eric Liddell Centre 15 Morningside Road Edinburgh EH10 4DP
© Haemophilia Scotland 2026
## **TABLE OF CONTENTS**
1. Introduction from our Chair **4** 2. A Message from our Director **6** 3. Our Staff **7** 4. Governance **8** 5. Trustees **8** 6. Charitable Purposes **9** 7. Summary of Main Objectives **9** 8. Our Achievements this Year a. Our Membership **10** b. Events and Projects **10** c. Fundraising **13** d. Engagement with other organisations **16** e. Advocacy **19**
9. Our Year in Numbers **22** 10. Financial Wellbeing Service **23** 11. Financial Review **24** 12. Approval of Annual Report **26** 13. Independent Examiner’s Report and **27**
13. Independent Examiner’s Report and Annual Accounts 2025 - 2026
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## **1. INTRODUCTION FROM OUR CHAIR**
When Bill Wright stepped back from the charity in 2024, I agreed to undertake the role of Chair for a period of two years. Our initial attempts to find a successor were not successful last year, but I am pleased to report that from a recruitment process undertaken in June 2026, we have identified a successor who is keen to take on the role.
Ross Laird is currently Head of Global Healthcare for the advocacy company Grayling. He works across Scotland and abroad. He has extensive experience in the charity sector having held the roles of Chair of YMCA Scotland, Board Member of Edinburgh College and Member of the Society of Antiquaries Scottish Council amongst other roles.
Ross has been appointed as Vice Chair of our board with a view to taking on the role of Chair during 2026/27. As he was co-opted to the board he will be seeking re-appointment at the AGM.
During the year, past three of our more recent additions to the board resigned due to a variety of personal reasons and at the AGM two further long standing trustees will be retiring from the board: Joanne Kirkham and Gregor McInnes. My admiration and appreciation go to these long-standing members who have supported the work of our small charity over many years. I thank them for their contribution and wish them well for the future.
It was apparent that we needed to secure replacement trustees to ensure that the board continued to represent a range of skills and experience required by the board. I am pleased to report that we have secured four willing volunteers who are offering themselves for election at the 2026 AGM.
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John Dearden
Chair
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They are:
- Julie Bisset (Inverness) George Walker (Glasgow) Angus Walls (Edinburgh) Craig Strachan (Motherwell)
Further details on the nominees are provided as part of the AGM Agenda.
The board recommends to the membership the election of these 4 members at the AGM as trustees, alongside Ross Laird who together will bring a good and varied range of expertise to the board.
We are conscious that our board needs further input from female members, particularly those with a bleeding disorder. Following the AGM, we anticipate we will have two vacancies available. If any existing female members feel they could contribute to raising the profile of women with bleeding disorders please contact me via hello@haemophilia.scot.
We are often asked how Bill Wright is doing. Bill cannot stop being a campaigner at heart and continues to help in a way that only he can. In reality he is making frequent visits to hospital facing up to an incurable disease which many others have faced but also keeping up an active social life. Most of the times I try to contact him he is on his bike or up a mountain somewhere. I do keep in contact with Bill and if there is any significant change to his condition, we will, with Bill’s permission, let members know.
Through the work of Alan Martin, our Director, and our Fundraiser, Malcolm Dunn, we continued to receive a high success rate on our grant applications over the last year, all of which is being put to good use as the financial statement and annual report show.
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Through successful grant income we have been able to retain the services of Maxie Coburn-Burke as our Financial Wellbeing Officer who has been in post now since May 2024. We have also had a positive response with the Scottish Government agreeing to funding for the appointment of an Advocacy Worker for a period of 12 months to support those pursuing a claim against the Infected Blood Compensation Authority. We were able to appoint Ruth Bidoni to this role in June 2026. Alex Whitteker continues to support members individually and through the programme of events arranged for members. We are always open to new ideas for events. If you have them, please do contact Alex at alex@haemophilia.scot.
The Infected Blood disaster has continued to occupy much of my and Alan’s time over the year in liaising with the Infected Blood Compensation Authority (IBCA), making representations on behalf of our members, responding to Government consultations and continuing to press for amendments to the statutory regulations governing compensation. We have often done this in collaboration with our sister organisations based in England, Northern Ireland and Wales and with the Scottish Infected Blood Forum.
Just after the year-end in April 2026 the Government published its response to a consultation on changes to the Compensation Scheme which arose from the Additional Report of the Infected Blood Inquiry published in July 2025. As of June 2026, the Government has published and laid before Parliament Regulations to make a third set of amendments to the Compensation Scheme. They do not go as far as we would like on a number of areas, but some significant changes have been made. The changes are likely to become law in the Autumn.
IBCA has continued to receive criticism of the speed at which compensation is being progressed for groups such as the estates of
bereaved families and the affected. We continue to press for improvements and for better communication between IBCA and claimants.
Through co-operation between ourselves, the Scottish Government, Edinburgh City Council and the original fundraising group, progress continues to be made in identifying a home for a Scottish Infected Blood Memorial. We are not there yet but the hope is that a location within Edinburgh’s Princes Street Gardens will be identified as suitable, allowing further planning work to be undertaken.
On behalf of the charity and our members, I wish to record our thanks to the medical and clinical staff of the Haemophilia Centres across Scotland for the valuable and dedicated work they do in dealing with day to day needs of our members but also in genuinely seeking to improve the care and support provided. Most of us have a long term relationship with the Centres and it is always comforting to know that there is someone there at the end of the phone for advice, reassurance, or simply to tell one you need to come into the Centre. We have all been there.
Last, but by no means least I thank the trustees and staff of Haemophilia Scotland for their commitment to the organisation and the valuable work they do to make our organisation a success. This would not be possible without your support, the support of our volunteers and those amongst you who regularly run, walk or climb to raise funds for our Charity.Thank you to all.
**John Dearden Chair 23rd July 2026**
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Alan Martin Director
## **2. A MESSAGE FROM OUR DIRECTOR**
As I reflect on 2025-26, I am struck by just how much has been achieved over the past year. It has been a year of growth, progress and exciting new opportunities for Haemophilia Scotland, but most importantly it has been a year in which we have continued to improve the support we provide to people living with and affected by bleeding disorders across Scotland.
One of the highlights of the year for me was the continued growth of our membership. We welcomed more individuals and families into Haemophilia Scotland than ever before, with membership increasing by 11% during the year. This is a particularly encouraging result and reflects the combined efforts of our awareness activities, stronger links with haemophilia centres and the growing range of services we now provide. Every person who joins our charity helps make a difference. Growing our membership means we can reach and support more individuals and families through the provision of information, events, services and opportunities. It also strengthens our voice, enabling us to better represent the experiences and priorities of the bleeding disorders community across Scotland.
Our events programme continued to provide valuable opportunities for members to connect, learn and share experiences. The Recently Diagnosed Family Weekend at Crieff Hydro was a particular success, bringing together families from across Scotland and helping people to build new friendships and support networks. We were also delighted to welcome seventy-two attendees to our Annual General Meeting and Members' Day at Edinburgh Zoo, while our Learn and Connect programme continued to help members from different parts of Scotland come together and discuss the topics that matter most to them.
This year also saw continued development of our Financial Wellbeing Service. Demand for the service increased significantly and referrals from haemophilia centres continued to grow as awareness of the support available became more widespread. The impact of the service can be seen not only in the financial gains secured for members but also in the reassurance and confidence it provides to people navigating a complex benefits system. We were also pleased to launch our Young People's Awareness Campaign towards the end of the financial year, helping young people to share their experiences and increase understanding of bleeding disorders within the wider community.
Alongside these achievements, we continued to represent our members on a wide range of issues. A significant amount of work during the year focused on infected blood compensation, ensuring that the experiences of infected and affected people in Scotland were reflected in discussions with the Infected Blood Compensation Authority, governments and other stakeholders. We also continued to advocate for improvements in treatment and care, promote equitable access to services and strengthen relationships with haemophilia centres and healthcare professionals across Scotland.
I am also immensely proud of the support shown by our members, families and supporters throughout the year. Community fundraising reached record levels, with an incredible £28,531 raised through challenge events, memorial fundraisers, community activities and individual donations. The generosity, kindness and commitment shown by so many people continues to be one of the greatest strengths of Haemophilia Scotland. None of these achievements would have been
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possible without the dedication of our staff team, volunteers, trustees, healthcare partners, funders and supporters. Most importantly, I would like to thank our members for the trust they place in us and for continuing to shape the direction of the organisation through their ideas, experiences and feedback.
As we look ahead to 2026-27, we remain committed to building on the progress made this year, expanding our services and ensuring that everyone affected by a bleeding disorder in Scotland has access to information, support and opportunities to connect with others. I look forward to continuing our work together over the coming year.
What continues to inspire me most is the resilience, generosity and sense of community that exists across Scotland's bleeding disorders community. Whether through attending events, volunteering, sharing experiences, fundraising or simply supporting one another, our members demonstrate the difference that a strong community can make. The ideas, feedback and experiences shared with us really do help shape our work and ensure that Haemophilia Scotland remains focused on the needs of the people we are here to support.
**Alan Martin Director**
**1st August 2026**
## **3. OUR STAFF**
We operate our organisation with two permanent and one part-time members of staff who bring great enthusiasm and dedication to their work interacting with a wide range of individuals and groups, sometimes supporting members experiencing personal difficulties.
**A L A N M A R T I N** DIRECTOR
**A L E X W H I T T E K E R** OPERATIONS MANAGER
**M A X I E C O B E R N - B U R K E** FINANCIAL WELLBEING OFFICER
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## **4. GOVERNANCE**
Haemophilia Scotland was formed in October 2014 as an unincorporated organisation. It converted to a Scottish Charitable Incorporated Organisation (SCIO) on 15 May 2015. The Constitution was amended on 17 July 2016, 19 May 2018 and 24 August 2024.
## **HOW TRUSTEES ARE APPOINTED**
The Constitution provides for a Board of between four and twelve charity trustees, who are elected by the members of Haemophilia Scotland at the Annual General Meeting (AGM). Trustees who are co-opted during the year remain in post until the next AGM, when they may stand for election by the membership.
Before each AGM nominations are invited from the membership and from inditividuals willing to become charity trustees. This helps ensure that members have the opportunity to put themselves forward and play an active role in the leadership and governance of the charity.
Haemophilia Scotland is a Scottish Charitable Incorporated Organisation (SCIO). Charity Number: SC044298.
Our Principal Address is: Eric Liddle Centre, 15 Morningside Road, Edinburgh, EH10 4DP
## **5. TRUSTEES**
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DATES ACTED (IF NOT FOR THE
TRUSTEE NAME OFFICE BEARER
WHOLE FINANCIAL YEAR)
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||**TRUSTEE NAME**|**OFFICE BEARER**|**DATES ACTED (IF NOT FOR THE**
**WHOLE FINANCIAL YEAR)**|
|---|---|---|---|
|||||
|1|Kazeem Alabi #|||
|2|Adam Davidson||to 29/07/2025|
|3|John Dearden #|Chair||
|4|Jay Gardner||to 30/08/2025|
|5|Sue Hook||from 01/09/2025 to 07/12/2025|
|6|Joanne Kirkham #|Secretary||
|7|Thomas Lorenz #|Treasurer||
|8|Katie Mackie|Vice Chair|to 30/08/2025|
|9|Heather MacLeod|Vice Chair|from 28/06/2025*|
|10|Louis Marlow #||from 30/08/2025|
|11|Gregor McInnes #|||
|12|Vicki Medina||from 30/08/2025*|
# Trustees at the date of approval of the annual report and accounts. Additionally Ross Laird was co-opted to the board on 14/07/2026 as Vice Chair and was thus a trustee at the time of approval of the 2025/26 annual report and accounts. * Resigned after the end of the financial year.
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## **6. CHARITABLE PURPOSES**
**1**
To further as a primary objective the health, education, wellbeing, and the social and economic welfare of all those in Scotland with a bleeding disorder and their families.
**2**
To further the health, education, and the social and economic welfare of the haemophilia and bleeding disorders community in Scotland and internationally.
**3**
To bring together individuals and organisations that share such interests.
**4**
Where possible, to cultivate reciprocal relations with organisations that have similar aims, relevant health, social welfare and educational objectives or which may otherwise support or benefit the Scottish Charitable Incorporated Organisation (SCIO).
## **SUMMARY OF 7. MAIN OBJECTIVES**
**1**
Provide direct support and opportunities for our members within the Scottish bleeding disorders community to engage in social, educational and support activities and events throughout the year.
**2**
Communicate up to date and relevant information to our members on matters directly related to living with a bleeding disorder.
**3**
Provide advocacy and support services to members and work closely with Scottish Haemophilia Centres and key stakeholders to ensure the best possible treatment and care.
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## **8. OUR ACHIEVEMENTS THIS YEAR**
## **(A) OUR MEMBERSHIP**
**Haemophilia Scotland’s vision is for Scotland to be a place where people with haemophilia, Von Willebrand’s and other rare bleeding disorders, along with their families and carers, are fully supported to live healthy, happy lives.** Membership of Haemophilia Scotland is free and open to anyone living with or affected by a bleeding disorder. This includes family members, friends, carers and healthcare professionals who wish to support our work and be part of our community.
Throughout the year, we delivered a series of awareness campaigns aimed at reaching people who may not previously have known about Haemophilia Scotland or the help available to them.
Our work included closer collaboration with haemophilia centres, promotion of our Financial Wellbeing Service, and targeted engagement with groups who can sometimes feel isolated, including newly diagnosed families, women and girls with bleeding disorders, and those in need of further support. These efforts helped us reach more people, increase awareness of our work and welcome new individuals and families into our community.
We began the year with 415 members registered with Haemophilia Scotland. By continuing to promote our work and strengthen engagement with the bleeding disorders community, our membership rose to 461 by 31 March 2026, representing an 11% increase over the year.
This is a particularly encouraging result, with
membership numbers typically rising by around 5% to 6% annually in recent years. Every new member helps strengthen Haemophilia Scotland, while allowing more people and families to benefit from our services, events and activities. It also helps ensure that the experiences and views of the wider bleeding disorders community are represented as strongly as possible when we engage with healthcare providers, governments and other decision makers.
## **(B) EVENTS AND PROJECTS**
Our ongoing commitment to providing accessible events and activities for members remained a key focus throughout 2025-26. We delivered a varied programme of local events, family activities and learning opportunities designed to bring people together, increase knowledge and encourage people to share their experiences. These events provided valuable opportunities for members and families across Scotland to connect with one another, access support and become more involved in the wider bleeding disorders community.
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Recently Diagnosed Weekend
June 2025
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One of the highlights of the year was our Recently Diagnosed Family Weekend, held at Crieff Hydro in June 2025. The event brought together eleven families, including 22 adults and 18 children, who were adjusting to life after a diagnosis of a bleeding disorder within their family. Several of the families had only recently joined Haemophilia Scotland and were able to learn more about the support, information and opportunities available through the charity. Over the two days, healthcare professionals from across Scotland delivered practical information sessions, while families had time to ask questions, share experiences and support one another. Feedback gathered showed that attendees felt more confident about managing their condition, had a better understanding of treatment and support services, and valued meeting other families facing similar challenges. For many families, building new friendships and support networks was one of the most valuable outcomes of the weekend.
Our Learn and Connect programme continued with a member event in Inverness during the summer. These events continue to provide an opportunity for members from different parts of Scotland to meet others with shared experiences and discuss topics affecting them locally. Conversations covered a range of topics, including living with a bleeding disorder, accessing support, treatment experiences and staying active. Following feedback from members, we are now planning future events in 2026/27 around specific themes and guest speakers to encourage greater participation and discussion.
_**“Not just a meeting but a chance to meet others and bring families together.”**_ **- Member feedback from Members’ Day & AGM**
Comic Book Workshop in Elgin March 2025
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In August, we held our Annual General Meeting and Members' Day at Edinburgh Zoo. Seventy-two people attended the event to hear about the charity's achievements over the previous year and our plans for the future. Members also had the opportunity to meet trustees and staff and learn more about the work of Haemophilia Scotland. Following the AGM, attendees enjoyed guided tours led by the Edinburgh Zoo Education Team, providing a relaxed opportunity for members and families to socialise, catch up with friends and meet new members of the community. For many attendees, our Members' Day remains one of the few opportunities each year to meet others from the wider Scottish bleeding disorders community in person.
Members’ Day & AGM Edinburgh Zoo August 2025
Recently Diagnosed Weekend Crieff Hydro June 2025
Our Financial Wellbeing Service continued to play an increasingly important role in supporting members throughout the year. Referrals from haemophilia centre staff increased as awareness of the service grew, helping more members access specialist advice on benefits and financial support. Our Financial Wellbeing Officer supported members both remotely and in person, making the service accessible across Scotland. Demand continued to grow throughout the year, reflecting both the financial challenges faced by many members and the positive impact the service has had in helping people secure the benefits they are entitled to. Further information on the impact and achievements of the Financial Wellbeing Service, including the financial gains secured for members this year, can be found later in this report.
In February 2026, we launched a new Young People's Awareness Campaign, which will run through to the end of summer 2026. Working alongside young members and their families, the project will create a series of short videos that share personal experiences of living with a bleeding disorder. The videos will be used across our website and social media channels to help reach people who may not yet know about the charity.
By giving young people an opportunity to share their experiences, we hope to increase understanding of bleeding disorders and encourage more families to engage with Haemophilia Scotland.
Young People’s Awareness Campaign February 2026
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## **(C) FUNDRAISING**
## **(i) TRUSTS AND FOUNDATIONS**
Trusts and foundations remain an important source of funding for Haemophilia Scotland, helping us deliver projects, events and activities throughout the year. As in previous years, we researched funding opportunities that aligned with our projects and planned activities, while also applying for grants that could help fund our core costs and services for members.
During the year, we submitted 44 grant applications to trusts and foundations and were successful in securing 11 awards, giving us a success rate of 25%. In a challenging and highly competitive funding environment, this is a positive result and reflects both the quality of the projects we deliver and the confidence funders place in our work. These grants generated £39,500 of income and contributed towards a wide range of activities delivered during the year.
We are extremely grateful to the following organisations for their support and for recognising the importance of improving the lives of people living with bleeding disorders and their families.
- Jeans for Genes
- Hospital Saturday Fund Essentia Foundation
- Elizabeth Frankland Moore and Star Foundation Anton Jurgens Charitable Trust Truelight Trust Cruden Foundation
- Hugh Fraser Foundation Appletree Trust Meikle Foundation
- The Thomas Sivewright Catto Charitable Settlement
## **(ii) SCOTTISH GOVERNMENT**
The Scottish Government continued its valued support of Haemophilia Scotland during
2025-26 through a grant award totalling £38,000. Of this, £34,000 was provided towards the charity’s core activities, helping to fund staffing costs, day-to-day operations and the running of the organisation.
The remaining £4,000 was awarded to support our advocacy work for members affected by the Infected Blood Disaster and those progressing through the compensation process. This funding has helped us respond to increasing demand for information, guidance and support as more members begin their compensation scheme claims.
We remain grateful to the Scottish Government for its continued commitment to Haemophilia Scotland and recognition of the contribution the charity makes across Scotland. This annual funding provides stability for the organisation and allows us to plan with confidence for the year ahead.
## **(iii) CORPORATE PARTNERS**
Haemophilia Scotland also benefits from partnerships with several corporate organisations, primarily through grants, donations and sponsorship arrangements. These contributions help us deliver services, events and projects that improve the health and wellbeing of people living with bleeding disorders.
During 2025-26, our corporate partners provided a total of £32,940 in grants and donations. Their support has helped us continue existing activities while also developing new projects and opportunities for members.
We would like to thank the following corporate supporters for their continued commitment to the work of Haemophilia Scotland and the wider bleeding disorders community.
- CSL Behring Roche Products Ltd SOBi
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## **(iv) COMMUNITY FUNDRAISING**
Community fundraising and individual donations remain one of the most inspiring aspects of our fundraising. We are incredibly grateful to the many members, families and supporters who give their time, energy and enthusiasm to raise funds on our behalf. Whether taking part in organised events, personal challenges or activities within their local communities, their efforts demonstrate the strong sense of commitment that exists within the bleeding disorders community and the value they place on the work of Haemophilia Scotland.
We are delighted to report that 2025-26 was one of our most successful years for community fundraising, with an outstanding £28,531 generated through challenge events, community activities and individual donations.
A significant contribution came from Amanda Tonner, Kirsten Sim and their family and friends, who took part in the Glasgow Kiltwalk in April 2025. The event was undertaken in memory of Amanda's son, Jamie Tonner, who sadly passed away in January 2025. Their remarkable efforts raised £16,683, making it one of the largest single community fundraising achievements in the charity's history. The response from family, friends and the wider community was a fitting tribute to Jamie's memory and inspired many people across the bleeding disorders community.
Many others also took on personal challenges throughout the year in support of Haemophilia Scotland. In May, Dean Barry and Michael Steele participated in the Edinburgh Marathon Festival, raising an impressive £3,085 between them. During the summer, Jamie's family and friends came together again for a memorial fundraising evening, generating additional funds while celebrating his life and keeping his memory at the heart of the community.
Wellbeing Officer, Maxie Cobern-Burke, took part in the Dundee Kiltwalk, while Paige Brodie completed the Scottish 10K. We also received a contribution from the Grant family in Aberdeen, who took part in the Aberdeen Kiltwalk and organised the Foggie Snail Trail through their local community.
In September, our Director, Alan Martin, completed the Edinburgh Kiltwalk for the second time. Towards the end of the year, the Campbell family organised a Christmas fundraiser, while in March Dana Ferrar completed the Supernova Run. Together, these activities raised £1,747 and provide further examples of the enthusiasm, generosity and commitment shown by so many people connected to Haemophilia Scotland.
Every contribution, regardless of size, reflects the kindness and dedication of people who care deeply about improving the lives of others affected by bleeding disorders. We would like to offer our sincere thanks to everyone who donated, fundraised, volunteered or took part in an event during the year. Their efforts helped make 2025-26 a record-breaking year for community fundraising and demonstrated once again the remarkable spirit that exists within our community.
Maxie Cobern-Burke and Lucica Banu Dundee Kiltwalk September 2025
Fundraising activity continued throughout the summer. Lucica Banu and our Financial
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Dean Barry
Edinburgh Marathon
May 2025
Michael Steele Dan and Sam Grant
Edinburgh Marathon Aberdeen Kiltwalk
May 2025 June 2025
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Glasgow Kiltwalk in Memory of Jamie Tonner
April 2025
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## **(D) ENGAGEMENT WITH OTHER ORGANISATIONS**
## **(i) PATIENT ORGANISATIONS**
Working in partnership with other organisations remains an important part of Haemophilia Scotland's work. By sharing knowledge, experience and ideas, we can help ensure that the priorities and experiences of people affected by bleeding disorders are understood by healthcare providers, governments and other decision makers.
These partnerships give us opportunities to influence discussions on treatment, care and policy, while helping decision makers better understand the needs and experiences of our members. They also allow us to work with organisations across Scotland and the wider UK to promote greater equity of access to services and support, while developing new ideas and collaborative projects that benefit the wider community.
Throughout the year, we continued to work closely with the UK Haemophilia Society, Haemophilia Northern Ireland and Haemophilia Wales through the Haemophilia and Bleeding Disorders Alliance (HBDA). The Alliance provides an opportunity for patient organisations and clinical representatives from the UK Haemophilia Centre Doctors’ Organisation (UKHCDO) to discuss matters affecting people with bleeding disorders across the UK and to identify areas where a coordinated approach can help bring about positive change.
A key focus during the year was the ongoing discussion around the implementation of recommendations arising from the UK Peer Reviews of haemophilia comprehensive care centres and Recommendation 9 of the Infected Blood Inquiry Final Report, which relates to the future organisation of haemophilia care. Alliance members shared
concerns about the limited progress made in some areas such as staffing levels at centres and worked together to develop a joint response. This included sending a joint letter to Health Ministers and Health Boards across the UK to highlight concerns and encourage greater coordination and action.
We also worked closely with the Haemophilia Society on a range of shared priorities throughout the year. In July, we attended the launch of the Society's report on standards of care for women and girls with bleeding disorders at the Houses of Parliament. The report highlighted several important issues affecting women and girls across the UK, and its findings will help inform Haemophilia Scotland's own developing programme of work in this area. Our ongoing collaboration also ensures that the experiences of people living in Scotland are represented in wider UK discussions and enables us to learn from successful projects and initiatives delivered elsewhere.
## **(ii) HAEMOPHILIA CENTRES AND CLINICAL NETWORK**
Strong relationships with Scotland's haemophilia centres are central to much of our work and help us understand and represent the needs and experiences of patients across the country. Through regular contact with haemophilia centre staff across Scotland, we can promote our services, raise awareness of the support available through Haemophilia Scotland and work together to address issues affecting our members. These relationships also help us identify emerging needs within the community and work with the centres to improve standards of care for patients.
Throughout the year, we continued to strengthen our engagement with haemophilia centres across Scotland. Our team visited centres in Edinburgh and Glasgow and participated in virtual meetings with the centres supporting patients in the other regions. These discussions helped us share
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information about upcoming events and projects, increase awareness of our services and encourage referrals into both the charity and our Financial Wellbeing Service.
The growing profile of our Financial Wellbeing Service led to a significant increase in referrals from haemophilia centre staff during the year. We worked closely with the Edinburgh Haemophilia Centre and the Royal Infirmary of Edinburgh to develop a dedicated monthly financial wellbeing clinic for patients. The experience gained through this project has provided us with a model that can now be adapted and introduced at other haemophilia centres where demand may be greater in the future.
Haemophilia Scotland continues to represent the patient voice within the Scottish Inherited Bleeding Disorders Network (SIBDN), which brings together healthcare professionals and patient representatives to improve treatment, care and communication for people with bleeding disorders across Scotland. During the year, we remained actively involved in the Network's Steering Group, while our Director continued in his role as Chair of the Education and Communications Sub-group.
Uncertainty surrounding the future of Scotland's clinical networks remained a challenge throughout 2025-26, as the Scottish Government's review of NHS Scotland Clinical Networks had still not been published by the end of the year. This limited the Network's ability to undertake longer-term planning and prevented several projects from progressing beyond short-term business plans.
Despite these challenges, we worked closely with the Network's Chair, Dr Ryan Rodgers, Network Programme Manager Mhairi Gallagher and other stakeholders to ensure that patient perspectives continued to be represented. We were encouraged by discussions with the Minister for Public Health, Jenni Minto, who indicated that there
appeared to be little risk to the future of the Network despite the ongoing delay to the review.
We were also pleased to play an active role in the SIBDN Annual Education Day once again, held in Edinburgh in November 2025. Several members of our team presented throughout the afternoon sessions. Our Trustee, Carolyn, presented on behalf of our Women's Working Group, sharing the experiences of women and girls affected by bleeding disorders and highlighting recommendations from recent UK research. Our Director provided an update on the charity's achievements and future plans, while Maxie presented on the success of our Financial Wellbeing Service and the role healthcare professionals can play in supporting benefit applications.
Events such as the Education Day provide valuable opportunities for healthcare professionals and patient representatives to learn from one another, share good practice and discuss ways to improve care and support. They also help ensure that the experiences of people living with bleeding disorders remain at the centre of discussions about future developments in treatment and care.
Carolyn McGimpsey speaking at the SIBDN Education Day November 2025
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Paige Brodie
Scottish Half Marathon
August 2025
Alan Martin
Edinburgh Kiltwalk Members’ Day & AGM
September 2025 August 2025
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_**“I understood that I am not alone and I can get help and support if I need it. I learned that I need to trust my son more and that it is not good to always be panicking.”**_ **- Member feedback from Recently Diagnosed Weekend**
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## **(E) ADVOCACY**
**Advocacy is one of the ways Haemophilia Scotland helps bring about improvements in treatment, care and support for people affected by bleeding disorders. By engaging with decision makers, healthcare professionals and government bodies, we help ensure that the experiences and priorities of our members are considered when important decisions are made.**
## **(i) INFECTED BLOOD INQUIRY AND COMPENSATION**
With the Infected Blood Compensation Authority (IBCA) established and compensation payments to some infected individuals already underway, much of our advocacy work during 2025-26 focused on ensuring that the views and experiences of infected and affected people in Scotland were heard as more people became eligible to begin the claims process.
At the start of the year, there was growing frustration across the UK infected blood community about the slow pace of progress and the limited information being provided about decisions being taken by both IBCA and the Government. Haemophilia Scotland worked closely with the UK haemophilia societies, the Scottish Infected Blood Forum (SIBF) and other campaign groups to raise the most pressing matters affecting our members with both the UK Government and the Infected Blood Inquiry. Particular concerns included the level of evidence some people were being asked to provide, disputes over the value of some compensation awards, and the lack of priority being given to estates of deceased individuals and affected family members. We also highlighted how ongoing delays were compounding the emotional harm already experienced by many people who were still waiting to begin their claim.
In May 2025, our Chair and Director visited IBCA's headquarters in Newcastle to gain a
better understanding of how the organisation was operating and how claims were being assessed. The visit provided an opportunity to discuss matters being raised by our members and to better understand the challenges facing IBCA as it prepared to expand the number of people entering the compensation process.
The strength of feeling across the community ultimately led to the Infected Blood Inquiry taking the unusual step of holding further hearings with officials from the UK Government and IBCA. Following these hearings, Sir Brian Langstaff published an Additional Report on Compensation in July 2025 containing nine new recommendations aimed at speeding up the compensation process and addressing areas where existing awards were considered too low or did not fully reflect the harm experienced by individuals and families.
The report also highlighted the need to improve how compensation was being delivered. This included introducing a prioritisation process for those most in need, improving transparency around decision-making and strengthening engagement with infected and affected people throughout the claims process.
In presenting the report, Sir Brian made clear that he felt unable to stand by while so many people continued to express frustration about the way compensation was being delivered. The publication of the report was an important moment for the community and placed renewed pressure on the Government to act. Several of the recommendations were subsequently accepted and led to changes in how the scheme operated, including increases to some awards and improvements to the claims process.
Following publication of the Additional Report, the UK Government launched a public consultation towards the end of 2025 on several proposed changes to the compensation scheme. Haemophilia Scotland submitted a
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formal response, drawing on feedback shared by our members and building on the organisation’s position on the issues covered within the consultation.
We continued to engage regularly with IBCA throughout the year as the number of compensation claims increased. This included discussions on improving communication with the community and enhancing the content and accessibility of the IBCA website, making it easier for people find answers to common questions about the claims process. We also used these opportunities to share the experiences of our members and highlight recurring themes affecting those progressing their compensation claims.
In January 2026, IBCA held its first community engagement event in Glasgow. The day began with a roundtable discussion involving representatives from Haemophilia Scotland, the Scottish Infected Blood Forum and clinicians. This provided an opportunity to discuss progress and identify areas where further action was needed. During the afternoon session, infected and affected individuals were able to meet directly with IBCA staff and ask questions about their current or future claims.
We also welcomed the introduction of regular monthly meetings between IBCA and patient organisations during the final months of the year. These meetings provide a more structured format to discuss progress, share experiences from across the community and raise matters continuing to affect people navigating the compensation process.
The beginning of 2026 also saw the first claims from deceased infected estates and affected individuals enter the compensation process as part of a new testing phase for these categories. This was an important milestone, particularly for families who have been waiting many years without any previous support or compensation. We hope that, as the year
progresses, IBCA will continue to expand the scheme and increase the number of claims being processed across all categories. This will allow more infected and affected people to access the compensation they deserve.
## **(ii) SCOTTISH AND UK INFECTED BLOOD MEMORIALS**
Significant progress was made during the year towards establishing a permanent Scottish memorial to recognise those who lost their lives as a result of contaminated blood and blood products. The memorial will also serve as a lasting reminder for future generations of the impact that the largest treatment disaster in NHS history had on so many individuals and families.
Our Director continued in his role as Co-Chair of the Scottish Infected Blood Memorial Working Group, coordinating discussions between representatives of the infected blood community, Edinburgh City Council, the appointed public arts consultant and other key stakeholders. Much of the work during the year focused on identifying a suitable location for the memorial, with Princes Street Gardens remaining the clear preference of the community. In August 2025, Edinburgh Council's Culture and Communities Committee gave in-principle approval for a memorial to be installed within the Gardens. While identifying the most suitable and practical location within the park has presented a number of challenges, positive progress has continued to be made with all parties involved. We are hopeful that the project will move into the design phase soon and take another important step towards creating a permanent national memorial.
Alongside the Scottish project, work also began on the development of memorials elsewhere in the UK following the Government's acceptance of the Inquiry recommendation to establish national memorials. A UK Memorial Committee was later established to oversee this work, bringing
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**17**
together people from across the UK to represent the infected and affected community. The Committee has been very supportive of the progress already made in Scotland and has offered assistance where possible. We hope this support will help move the project forward and bring the memorial a step closer to becoming a reality.
Following the end of the reporting period, members of Haemophilia Scotland attended the Service of Recognition, Remembrance and Reflection, held on 19th May 2026 at St Paul's Cathedral in London. The event brought together people from across the UK to remember those who have been lost, recognise the experiences of those affected by the contaminated blood scandal and reflect on the importance of ensuring that such a tragedy can never happen again.
## **(iii) SCOTTISH AND UK GOVERNMENTS**
Throughout the year, we engaged regularly with both the Scottish and UK Governments on important matters affecting people living with bleeding disorders. These discussions covered the future direction of services in Scotland, implementation of the Infected Blood Inquiry recommendations described earlier, and wider issues affecting the health and wellbeing of our members.
Our Chair also represented the charity on the Scottish Government's Infected Blood Oversight and Assurance Group (OAG), which oversees the implementation of the Inquiry's recommendations in Scotland. The Group considered a broad range of issues, including staff training, patient advocacy, NHS record keeping and a review of the processes for monitoring liver damage in people infected with hepatitis. Through our involvement, we have helped ensure that the lived experiences of infected and affected individuals remain at the centre of the improvements being taken forward in Scotland.
We also remained involved with the Scottish Infected Blood Support Scheme (SIBSS) Advisory Board. Following recommendations made in the Infected Blood Inquiry's Additional Report, it was confirmed that SIBSS would continue operating beyond its previously anticipated closure date. This extension will help ensure a smoother transition to the Infected Blood Compensation Authority (IBCA) while compensation claims continue to be opened across different claimant groups. Haemophilia Scotland welcomed this decision and remains committed to supporting SIBSS for as long as needed.
## **(iv) NHS SCOTLAND AND HEALTH SERVICES**
Helping to improve treatment and care for people living with bleeding disorders remains one of Haemophilia Scotland's most important objectives. By building strong relationships with healthcare professionals, haemophilia centres and national organisations, we can highlight the needs of our members and help influence positive change in services across Scotland.
During the year, our work included helping to ensure that people in Scotland can benefit from the same treatment options available elsewhere in the UK. We also highlighted the need for better access to specialist physiotherapy services, helping to improve consistency in care and support across the country. Access to specialist physiotherapy remains a priority for the charity, and we will continue to advocate for improvements in this area.
We also continued to advocate on behalf of individual members when difficulties arose with treatment, care or access to support. Through our relationships with haemophilia centres and healthcare professionals, we were able to address matters directly and help members overcome challenges affecting their care. The introduction of our new Advocacy Support Worker this summer will help us provide even greater assistance to members and further strengthen this area of our work.
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## **9. OUR YEAR IN NUMBERS**
**461**
**11%**
**279**
members as of 31/03/2026
increase in membership from previous year
members on our monthly e-mail list
**Community Events Our Website 115 20,277** views on website members attended events throughout the year **14% 3** locations we met our members:Crieff, Edinburgh and Inverness increase in visitors to our website
**Community Fundraising 11** fundraising events by our community raised by our **£28,531** community **82%** increase infundraising
**Our Social Media** new followers on Facebook **74** increase in content interaction **29%** on Facebook new followers on Instagram **47** increase in content interaction **100%** on Instagram
_Percentages in comparison with 2024–25 statistics_
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## **10. FINANCIAL WELLBEING SERVICE**
## **Supporting our community through expert benefits advice**
Our Financial Wellbeing Service continues to make a significant difference to the lives of members across Scotland. The service was established to help people affected by bleeding disorders better understand their entitlement to benefits and financial support, while providing practical assistance with applications, reviews and appeals.
During 2025-26, the service supported **25 successful benefit applications** , helping members secure **£182,760** in annual benefit entitlements. Members were also awarded **£26,888 in backdated payments** . Alongside these successful applications, **13 members were supported to challenge benefit decisions** , ensuring they had access to specialist advice and representation throughout the process.
Since the service was established in May 2024, it has helped members secure **£245,360 in annual benefit entitlements** and **£29,806 in backdated award** s through **39 successful applications** . These figures demonstrate both the need for specialist support and the positive impact it can have on the financial wellbeing of people living with bleeding disorders.
Alongside one-to-one support, our Financial Wellbeing Officer, Maxie Cobern-Burke, has continued to raise awareness of financial wellbeing issues through presentations, member events and engagement with healthcare professionals. During the year, Maxie presented at the Scottish Inherited Bleeding Disorders Network Education Day and worked closely with haemophilia centres to increase awareness of the service and encourage referrals.
“ _Maxie was approachable and didn't make me feel stupid for asking all of my questions. We had never engaged with welfare before and would have been totally lost without her.”_
The continued success of the Financial Wellbeing Service shows the value of having a dedicated specialist who understands both the benefits system and the challenges faced by people living with bleeding disorders.
**25 £182,760** successful in annual gains benefit of new benefit applications entitlements during 2025-26 during 2025-26
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## **11. FINANCIAL REVIEW**
Haemophilia Scotland is required to produce annual accounts following guidance issued by the Office of the Scottish Charity Regulator (OSCR). These accounts are subject to review by an external examiner who is required to certify whether the accounts are a fair reflection of the organisation’s financial affairs on a year-by-year basis. The information below is provided to meet OSCR requirements.
## **01. POLICY ON RESERVES**
We maintain a policy of holding some monies in reserve, separate from our core operating budget, to cover unexpected costs or any shortfall in anticipated income, subject to Board approval.
The Reserves Policy is reviewed and updated annually following the completion of the budget for the upcoming financial year. For 2025–26, the policy stated that we would retain sufficient funds to cover four months of operating expenses, along with any potential redundancy payments. The reserve amount was £57,397.13, and we are pleased to report that there was no need to draw on these reserves during the year.
## **02. DEFICIT**
There is no deficit in the overall funding for the organisation.
## **03. DONATED FACILITIES AND SERVICES**
We have not been in receipt of any donated facilities or services within this period.
## **04. SUMMARY OF OUR FINANCIAL POSITION**
We ended the 2025-26 financial year with an overall surplus of £12,472. This reflects a surplus of £32,188 on our core funding, partially offset by expenditure on restricted projects which included money carried forward from previous years. As a result, the restricted funds showed a planned deficit as those designated monies were used for their intended purpose.
Our accounts are prepared on the basis of income and expenditure arising within each financial year. Inflationary pressures continue to affect the charity's finances, particularly in relation to staffing, events and operational costs. We retain sufficient funds to meet our ongoing obligations, including the day-to-day running of the organisation, staffing costs and the delivery of projects and events funded in previous years.
A summary of our fundraising activity can be found earlier in this report, with our main areas of income and expenditure illustrated in the charts below. As with many charities, maintaining a sustainable financial position remains an ongoing challenge and requires continued efforts to secure new sources of income while meeting the growing needs of our members.
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## **SOURCE OF INCOME 2025-2026**
**----- Start of picture text -----**
16%
39%
18%
27%
**----- End of picture text -----**
**----- Start of picture text -----**
Trusts & Foundations
Scottish Government
Corporate Funding
Community & Individual Donations
**----- End of picture text -----**
## **CORE EXPENDITURE 2025-2026**
**----- Start of picture text -----**
3%
4%
16%
61%
16%
**----- End of picture text -----**
**----- Start of picture text -----**
Staff & Volunteers
Fundraising
Office & Operational Costs
Governance
Travel & Other
**----- End of picture text -----**
## **PROJECT EXPENDITURE 2025-2026**
**----- Start of picture text -----**
3% [1%]
5%
5%
35%
23%
27%
**----- End of picture text -----**
Project Related Staff Costs Financial Wellbeing Service Recently Diagnosed Weekend Learn & Connect Project Comic Book Project Young Person’s Awareness Project Virtual Physio Project Women’s Health Project
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## **12. APPROVAL OF ANNUAL REPORT**
The trustees confirm that they have approved the Annual Report for 2025–26.
Signed on behalf of the charity’s trustees.
…………………………………… ………………………………….. _John Dearden Thomas Lorenz Chair Treasurer 2nd August 2026 2nd August 2026_
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oscr
Office of the Scottish Charlty Regulator
Independent examiner's report on the accounts
v3
Report to the Charity name
trusteeslmembers of
Haemophilia Seolland
Reglstered charlty SC044298
number
On thè accounts of tho
charlty for the perlod
Period stsrt dale
MDnih
Period end date
Month
Day
Yo•r
D¥y
Yaar
01
2025
31
03
2026
Set out on pag88
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numbgri gf addibtyl¥l ¥heelBI
Respectlvo The charity's Iruslees are responsible for the preparation ol the accounts in aecordance
r•8ponslbllltle8 of with the terms of the Charities and Trustee Investment Iscollandl 2005 Act and the
truste85 and examlntr Charities Accounts (Scollandl Regulations 2006. The charity Iruslees consider that the
audit requirement of Regulation 10111 Idl ol the Accounts Regulations does not apply. 11
is my responsibility lo examine the accounts as required under section 44111 Icl of the
Act and to slate whether particular matters have come to my attention.
Bas1$ of Independgnt My examination is carried out in accordanee with Regulation 11 of the Charities
examlner's Statement Accounts (Scollandl Regulations 2006. An examination includes a review of the
accounting records kept by the charity and a comparison of the accounts presented with
those records. 11 also includes consideration ol any unusual items or disclosures in the
accounts and seeks explanations from the Iruslees concerning any such mallers. The
procedures undertaken do not provide all the evidence that would be required in an audit
and. consequently, I do not express an audit opinion on the accounts.
Indep&ndent examln8r'8 In the course of my examination. no matter has come lo my attention1glh8th
Statemont
which gives me reasonable cause lo believe that in any material respect the
requirements..
lo keep accounting records in accordance with section 44171 lal of the 2005 A¢1 and
Regulation 4 of the 2006 Accounts Regulations, and
to prepare accounts which accord with the accounting records and comply with
Regulation 9 of the 2006 Accounts Regulations
have not been mel, or
2. to which, in ry opinion. attention should be drawn in order lo enable a proper
efslan
the accounts lo be reached.
Date:
Slgned:
Name.. Andrew B Wilson
Rèlevant professlonal
qualificatlonlsl or body CA
Ilf any):
Addre$8: Nelson Gilmour Smith
Mercanti le Chambers
53 Bothwell Street
Glasgow G2 6TB
'Ple85e dte the wor(l$ in the br**ets rftY do not appty. If the worfs do appty. sel out thosè matters have come to ywr 8ttenlv)n on the
folling page.
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oscr
HAEMOPHILIA SCOTLAND
SC044298
Receipts and pa
ments accounts
Pgnod start dalg
lonlh
Pgriod end dalg
Month
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from
Year
to
Year
oi
A1
2025
31
Mar