Registered Charity No: 1158941
Haemophilia Wales Trustees Annual Report :
November 1[st] , 2024 -October 31[st] , 2025
Throughout the year Haemophilia Wales continued to provide information and support to patients and families with Haemophilia and Inherited Bleeding Disorders of all ages across Wales. We also continued to provide advocacy and assistance to individuals and bereaved families impacted by Infected Blood via blood transfusion.
We continue to actively engage with the Haemophilia Centres throughout Wales to ensure they are providing the care and support needed by patients and families. We keep in regular contact with our members to help identify any gaps in the service and to ensure concerns are raised with staff, local Health Boards and NHS Commissioners.
We have regular meetings with North Wales patients and staff at the North Wales Operational and Strategic Group meetings and Expert Patient Forum meetings. We sit on the Haemophilia Peer Review Working Party and the Haemophilia and Bleeding Disorders Alliance with Haemophilia Doctors, nurses, Social workers and Physiotherapists. We have representation on Welsh Government’s Infected Blood Inquiry Next Steps Group to ensure that the Infected Blood Inquiry Recommendations are implemented in Wales.
We organised and funded World Haemophilia Day, Swansea Haemophilia Centre’s children to adult Transition day and the Children’s Christmas Party. We held advocacy engagement meetings in Llandudno, at Insole Court in Cardiff and Sophia Gardens. Our patient, carer and family events provide opportunities for networking opportunitie in person and via social media. The Walk and Talk events and social gatherings with Cardiff and Swansea Haemophilia social workers, Physiotherapists and nurses have been very well attended. We also continued to meet with patients, parents and newly diagnosed families on an individual basis.
An important part of our work is providing Hardship Grants to those in urgent need of financial assistance and this year has been no exception. This work continued against a backdrop of a very low level of available funds throughout the year. The situation improved dramatically in the last reporting month with a number of donations from members, some of whom have finally received compensation. This enabled us to continue to organise the advocacy events for 2026 that we have historically held. We take this opportunity to offer our heartfelt thanks all those who supported the charity in the year
Haemophilia Wales, patients and families meet regularly with the Cross-Party Group on Haemophilia and Contaminated Blood at the Welsh Assembly. The meetings provide a
Prepared by Lynne Kelly CBE Chair Haemophilia Wales 1[st] of August 2026
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Registered Charity No: 1158941
Haemophilia Wales Trustees Annual Report : November 1[st] , 2024 -October 31[st] , 2025
platform for patients to raise any concerns they may have about service provision in Wales and the Infected Blood Inquiry. This forum provides a vital voice to patients who are currently receiving treatment in Wales and to bereaved families continuing to fight for justice for infected blood.
As a Core Participant in the Infected Blood Inquiry much of our workload has dramatically increased due to the Government’s failure to implement the Infected Blood Inquiry recommendations on 20[th] May 2024. There have been continued delays in rolling out compensation to the infected and affected in Wales. The Government’s lack of transparency and meaningful engagement with the Cabinet Office and the Infected Blood Compensation Authority continues to cause further distress to the community. Haemophilia Wales has been a strong advocate on behalf of the community ensuring we have Wales voice at Westminster. Haemophilia Wales provided further evidence to the Infected Blood Inquiry when Sir Brian Langstaff re opened it in May 2025 due to the lack of progress with compensation. We continue to push for the full implementation of The Infected Blood Inquiry Report and Recommendations 2024 the Additional Report on Compensation July 2025 to ensure that Welsh Infected Blood Inquiry victims receive the compensation they are entitled to.
Prepared by Lynne Kelly CBE Chair Haemophilia Wales 1[st] of August 2026
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