Our Advocacy Work

Haemophilia Wales has a formal role in the development of national policy in Wales for haemophilia care and the selection of treatments. This work enables patients to get access to the best treatment available.

In Wales the All Wales Advisory Group was established following the Ministerial Task and Finish groups review of haemophilia care, this review came about as a direct consequence of patients lobbying their MPs and AMs for access to Comprehensive i.e. Multidisciplinary care. The All Wales Advisory Group is chaired by Welsh Health Specialised Services Committee (WHSSC) who commission Haemophilia services. The Group consists of Patients, Haemophilia Centre Directors, Haemophilia Nurses, Physiotherapists, Social Workers, Psychologists, Dentists and Local Health Board Representatives from Cardiff, Swansea and Bangor.

Achievements

Haemophilia Wales has made significant progress in a number of critical areas since the Review into Haemophilia Care in Wales was initiated in 2011:
– 4 Haemophilia Psychologists have been recruited to serve the patients at Cardiff, Swansea & Bangor Haemophilia Centres
– 3 Haemophilia Physiotherapists at Bangor, Swansea & Cardiff
– 1 Haematologist at Swansea
– 1 Hepatologist at Cardiff
– 4 Fibroscans machines to allow monitoring of Fibrosis for Haemophilia patients with Hep C
– All Haemophiliacs treated with Interferon Free Hep C treatments.

Haemophilia Wales has been instrumental in the following achievements:
– The establishment of the Arthur Bloom Comprehensive Care Haemophilia Centre in Cardiff
– The introduction of Recombinant Factor 8 in Wales one year before England
– The Back bench Business Debate on Contaminated Blood October 14th 2010
– Ministerial Task and Finish Group Review into Haemophilia Care in Wales 2011

Wales specific consultation on financial support for contaminated Blood resulting in improved payments for victims