The Trustees of Haemophilia Wales have been actively involved with the Haemophilia community throughout their lives, as patients, parents or carers. Inevitably we have become involved in lobbying MPs, Assembly Members and Peers for an acknowledgement of the contaminated blood disaster, compensation, improvements in diagnosis, care and access to new therapies. We sit on the All Wales Advisory Group on Inherited Bleeding Disorders and are actively involved in the Cross Party Group on Haemophilia and Contaminated Blood at the Welsh Assembly. Importantly we all passionately care about helping the next generation of Haemophiliacs to get access to the the best possible care, and increase awareness of treatment choices for patients of all ages across the Haemophilia community.
As a group our Trustees have a strong track record of:
Successfully campaigning for the introduction of recombinant Factor 8
Establishing the Arthur Bloom Haemophilia Comprehensive Care at Cardiff
Haemophilia Physiotherapists : Appointments of a Haemophilia Physiotherapist at Swansea and Bangor and an additional Haemophilia Physiotherapist at Cardiff.
Four Haemophilia Psychologists at Cardiff, Swansea and Bangor to provide Psychological support to individuals, families and bereaved families
Four Fibroscan machines for monitoring liver fibrosis for patients with Hepatitis C
A Consultant Hepatologist at Cardiff at Cardiff to provide specialist liver care for Haemophiliacs with Hepatitis C
An interim commissioning policy for early access to Interferon free Hepatitis C treatments
£13.8 million funding from Welsh Government to help eradicate Hepatitis C in Wales : By 2017 all patients had received the new Hepatitis treatments and there is currently no waiting list in Wales.
In 2016 Haemophilia Wales achieved a Wales specific consultation on infected blood support resulting in improved payments for contaminated blood and the establishment of the Wales Infected Blood Support Scheme at Velindre Trust.
May 2017 A Public Inquiry is included in the new Labour Manifesto supported by the Cross Party Group and Welsh Labour MPs across Wales.
June 2017 Haemophilia Wales attend the Truth and Justice protest and a letter demanding a Public Inquiry is delivered to the Prime Minister at No 10 Downing St by Bronwen Morgan from Haemophilia Wales alongside Diana Johnson MP, Chair of the All Party Parliamentary Group and longstanding campaigners from England.
July 11th 2017 The Prime Minister Theresa May announces a Public Inquiry into Contaminated Blood
Lynne is the Chairperson of Haemophilia Wales and has a family history of Haemophilia which spans three generations. She has 3 sons with Haemophilia and has been actively involved in lobbying for improved care and support since the mid 1990s. She became a committee member of Haemophilia Wales in 2003 and a Trustee of the Haemophilia Society in 2011 after the death of her cousin from Hepatitis C. Lynne is Secretary of the Cross Party Group on Haemophilia and Contaminated Blood at the Welsh Assembly and sits on the All Wales Advisory Group on Inherited Bleeding Disorders and the Clinical Evidence and Evaluation Group for Rare Diseases. She was a member of the UK Rare Disease Strategy Group, participated in the Welsh Government’s Review of Orphan Drugs, the Review into access to Specialised Services in Wales and the Review of Haemophilia care in Wales.
Craig is a Technical Director of a national company, is married and has a son and daughter. He has haemophilia A and also comes from a family with three generations of experience in dealing with the effects of Haemophilia. Craig’s brother also a Haemophiliac died as a result of Hepatitis C and he and his family continue to be active in campaigning locally and nationally for recognition of the contaminated blood tragedy and access to new treatments, and have been fundraisers for the society for a number of years.
David is a Purchasing Director with a local company, he is married with two children. David also comes from a family with a long history of Haemophilia. He has direct experience of the issues associated with contaminated blood and the access to new therapies and treatments. He is a passionate advocate for change in the way access to treatment is made available and is a vocal and committed campaigner.
Rich is a PhD student in Cardiff University’s Geography Department and has severe haemophilia A however he has never let it stop him achieving his ambitions having travelled extensively, worked abroad, and gone through university, as he says several times to reach his current level of study. Rich is a strong advocate of community organising and has a history of campaigning within the environmental and student movements. Rich is keen to aid the work of Haemophilia Wales and ensure that other haemophiliacs receive the level of care they need in order to achieve their own dreams and goals.
Pat is a retired Primary School Teacher, latterly Deputy Head in a local village school where she is still active once a week. She enjoys yoga, craft work, cooking and spends a lot of time gardening.
Tony retired in 1996 after 35 years in the truck industry, much of it as a Manager and Director, working in South Wales and the West Country. Since then Tony has worked in the Voluntary sector; including the Crown Prosecution Inspectorate and Whitchurch Hospital. Tony is currently involved with the Forget me Not Chorus as a trustee and Chairman and sings with two Male Voice Choirs, Cowbridge and South Wales.
Pat and Tony’s son Paul, was a mild Haemophiliac and after receiving contaminated blood in the 1980’s contracted HIV and Hep C. He was a talented Architect, constantly working in spite of his health deteriorating. He received a liver transplant but did not recover from the surgery and died in 2008, aged 44. He left a widow, Monica, and a Daughter, Tia May, then aged 5 years old.
Pat and Tony have attended many meetings concerning Contaminated blood and current Haemophilia issues locally and at Westminster and The Welsh Assembly for over 20 years and they are naturally still committed to helping those families affected by haemophilia.
Nick has extensive personal experience of Haemophilia and was previously a committee member of Haemophilia Wales. He is a scuba diver and sports enthusiast and he is keen to see children with Haemophilia actively engaged in sporting activity.
Helen and John were previously committee members of Haemophilia Wales and have been actively involved in fund raising and campaigning to access new treatments and services for haemophilia over the last twenty years. They are parents of four teenagers three sons and a daughter and have direct experience of Haemophilia.
Nick is an Accounting and Finance graduate and has Haemophilia A. He is a musician and keen badminton player and assists Haemophilia Wales in providing support to anyone with a bleeding disorder. Coming from a family with a long line of Haemophilia (and with two older brothers with the disorder) there was always support as a child. However, Nick realises that not every young family has this kind of support and that is imperative for Haemophilia Wales to continue their campaign to heighten awareness.
Nigel is a senior manager in the NHS and a Fellow of the Royal College of Speech and Language Therapists. He has severe Haemophilia B and was infected with Hepatitis C through contaminated blood products during his childhood. He had a series of unsuccessful interferon based treatments but eventually cleared the Hep C virus in 2016 using a combination of Viekirax and Exviera. He has been writing to MPs and AMs since the early 1990’s in order to gain support and recognition for those affected by the contaminated blood tragedy. As a patient representative on the All Wales Advisory group, Nigel has worked consistently on behalf of patients across Wales for continued improvements in both service provision and access to new Haemophilia and Hep C treatments.