Haemophilia Wales Trustees Annual Report : November 1[st ] 2023 -31[st ] October 2024
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 provide advocacy and assistance to individuals and bereaved families impacted by Infected Blood via blood transfusion.
We 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 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 organised and funded World Haemophilia Day, the children’s summer event at Folly Farm and the Children’s Christmas Party. In addition to this we provide networking opportunities to families both in person and via social media. We also meet with parents and families as required.
We provide Hardship Grants to those in urgent need of financial assistance.
Haemophilia Wales, patients and families meet regularly with the Cross Party Group on Haemophilia and Contaminated Blood at the Welsh Assembly. The Group is Chaired by Rhun Ap Iowerth MS and the meetings are always well supported by patients, families and members of the Senedd. The meetings provide a 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.
Haemophilia Wales is a Core Participant status at the Infected Blood Inquiry and our lawyers at Watkins and Gunn are recognised legal representatives at the Inquiry. We hold regular update meetings in North and South Wales for our members.
The Infected Blood Final Report and Recommendations were published on 20[th] May 2024 which reported a catalogue of failures at systemic, collective and individuals levels with more than 3,000 deaths attributable to Infected Blood.
We will continue to work tirelessly to ensure that the Infected Blood Inquiry’s recommendations are implemented by the Government.
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