Haemophilia Scotland: creating a community and supporting them to live more active lives

“One of the most important lessons we’ve learned is not to assume we know what the community needs”

The ultimate goal of Haemophilia Scotland is to reach a point where the organisation is no longer needed. Alan Martin, the organisation’s Director, believes this should be the aim of every charity. “We are not there yet, but charities are usually formed to address an urgent, unmet need. If we reach a stage where funding, support, or new breakthrough treatments eliminate that need, then our job is done.”

Despite its name, Haemophilia Scotland supports people with a range of bleeding disorders, not just haemophilia. Established twelve years ago, the organisation is built on three key pillars: support, information, and advocacy. A major focus is fostering a sense of community among its members, who are spread across Scotland. While each member has a unique story and circumstances, the organisation creates opportunities for them to connect, share experiences, and support one another. They keep members informed about the latest independent information and available services for people with bleeding disorders. They regularly engage with NHS Scotland and the Scottish Government to highlight key issues raised by members and to advocate to ensure vital changes are implemented.

One critical area of their work is addressing the infected blood scandal, which dates back to the 1970s and 1980s and had a direct impact on many of their members. After several decades of campaigning, it has only been in the last year following the conclusion of the Infected Blood Inquiry that compensation for those affected and their families has been made available. Alan reflects, “I don’t think I have ever met a community as resilient as this one. They have had decades of their lives being devastated by this disaster, yet they continue to fight for justice. That’s why I’m so glad and extremely proud that we’re here to support them however we can.” Haemophilia Scotland remains committed to ensuring the recommendations from the inquiry are implemented and that safeguards are put in place to prevent such a tragedy from happening again. “Government and Health Boards have accepted that improvements are necessary, and we are here to make sure they make them.”

The organisation works closely with the NHS and local haemophilia centres, recognising that the staff and multidisciplinary teams in these centres are vital link to the work they do. They also advise the Scottish Government, ensuring that lived experiences are at the forefront of policy and service improvements.

However, securing funding remains a challenge. Despite evidence that physiotherapy reduces the frequency of bleeds, funding was not allocated for specialist haemophilia physiotherapists in local centres. “It’s not seen as a priority,” Alan explains. “Funds are being redirected elsewhere.” To address this gap, they secured funding last year for virtual physiotherapy sessions, allowing members across Scotland to participate from home. “It wasn’t a full substitute for in-person appointments, but it was something we could offer within our budget.  A positive note of offering this virtually was that we reached a much wider audience, especially for members more remote or with challenges with mobility.”

A key principle of Haemophilia Scotland is listening to its community. “One of the most important lessons we’ve learned is not to assume we know what the community needs,” Alan says. In response to growing member enquiries about financial support and benefits, they managed to secure additional funding for a Financial Wellbeing Officer. The role has proven invaluable, helping members navigate benefit entitlements, housing, and carer support. Demand for this service has been overwhelming and has led to almost £100,000 per year in entitlements being awarded to applicants thanks to the support the Financial Wellbeing Officer has provided since she started.

Looking ahead, Alan hopes to see a positive conclusion for those affected by the infected blood scandal. As treatments improve, he anticipates the nature of their support to members changing over time, with fewer bleeding episodes leading to more active lives. Haemophilia Scotland is committed to evolving alongside these changes, ensuring they continue to meet the needs of their community in the changing landscape of bleeding disorders.

Learn more about the work of Haemophilia Scotland

You can read all Connected Communities case studies here: https://www.alliance-scotland.org.uk/blog/case_studies/?projects=connected-communities