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Cross-Party Group Annual Report 2016-2017

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Cross-Party Group Annual Report 2016-2017 1 Cross-Party Group Annual Report 2016-2017 Cross Party Group on Haemophilia and Contaminated Blood Attendees Chair - Julie Morgan Vice Chair - Dr Dai Lloyd AM Rhun ap Iowerth AM Mark Isherwood AM Mick Antoniw AM Huw Irrancca Davies Jenny Rathbone Caroline Jones Hefin David Mike Hedges Vikki Howells Neil McEvoy David Rees John Griffiths Lynne Kelly – Haemophilia wales Patients and families CPG Meeting July 6th 2017 Julie Morgan AM, Dai Lloyd AM, Neil Mcevoy AM, Jane Hutt AM, Kathy Bevan- office of Huw Irrancca Davies AM, Lynne Kelly-Haemophilia Wales. Patients and families from all over Wales introduced themselves and described their experiences of contaminated blood ( HIV and Hepatitis C) which had been contracted via NHS blood and blood products in the 1970s and 80s. There was a discussion regarding the new system of support for Infected Blood, which was seen to be inadequate, did not reflect the true impact of the viruses and did include affected individuals. There was uncertainty on how payments would be made in the future. The Scottish scheme and Irish scheme were discussed as offering an alternative the English scheme. The new Hepatitis C drugs were also discussed as Wales was rolling out the treatment to all with Hepatitis C in order to eliminate the virus. People felt it was very unfair that the Department of Health were refusing to make payments in the future to people in Wales. Annual Report Cross Party Group on [include name of Group] [Date] 2 CPG Meeting 23rd November 2017 Attendees Julie Morgan AM Dr Dai Lloyd AM Rhun ap Iowerth Hefindavid AM Mark Isherwood AM Jenny Rathbone AM Jane Hutt AM Jillian Purvis office of Huw Irrancca Davies AM Vaughn Gething Cabinet Secretary Health Welsh Government Dr Chris Jones Deputy Chief Medical Officer Welsh Government Catherine Cody Quality and Control DHSS WG Lynne Kelly, Craig Sugar, David Thomas, Pat Summers, Tony Summers Trustees of Haemophilia Wales. Patients and families Vaughn Gething Cabinet Secretary for Health explained that Welsh Government were conducting a consultation to help assess people’s needs. It was felt by the group that this did not stretch to the affected only the infected. The Scottish scheme was raised and again the feeling was that this would be more acceptable than the English scheme. There were comparisons with the Hillsboro disaster, people needed to get to the truth and the payment system did not reflect the true suffering, people felt ignored. Vaughn Gething said that Welsh Govt had no notice of the announcement from the Department of Health, but he would endeavour to listen to people’s concerns. Workshops were subsequently in Bangor and Cardiff to discuss people’s views. On 25th January 2017 The Contaminated Blood Debate at the Welsh Assembly led by Julie Morgan AM and Chair of the CPG voted unanimously in favour of a UK wide Public Inquiry into contaminated blood. March 23rd 2017 Meeting with Vaughn Gething, Cabinet Secretary Health the CPG and Haemophilia Wales to announce the Wales Infected Blood Support Scheme with increased payments for infected individuals and one off payments for widows. In view of the longstanding difficulties encountered by victims in their dealings with the Macfarlane Trust, Skipton Fund and Caxton Foundation in England, the new scheme would be administered from Velindre NHS Trust. Annual Report Cross Party Group on [include name of Group] [Date] 3 CPG Meeting 18th July 2017 Attendees : Julie Morgan AM, Dr Dai Lloyd Vice Chair, Mark Isherwood AM, Jane Hutt AM,Hefin David AM, Abndrew RT Davies, Mike Hedges AM, Caroline Jones AM, Eluned Morgan AM, Hugh Irranca Davies, Lynne Kelly, Haemophilia Wales, Trustees Patients and Families, Michael Imperato,Solicitor, Watkins and Gunn, Barrsiters Rodri Williams QC and Christian Howells. The Prime Minister’s announcement of an Inquiry into contaminated blood was discussed. The feeling was that only a full Public Inquiry led by a Judge would allow the truth to be told. People felt that the Public Inquiry would have to have the power to compel witnesses and ensure full disclosure of documents. Everyone agreed that they needed closure after over 35 years. The Welsh legal team outlined the work they had done so far and took questions from the floor. It was agreed that a Welsh voice with legal representation was needed to ensure that the remit of the Inquiry was wide enough. Annual Report Cross Party Group on [include name of Group] [Date] 4 Annual Financial Statement. 2016-2017 Cross Party Group on Haemophilia and Contaminated Blood Julie Morgan AM -Chair Lynne Kelly Haemophilia Wales -Secretary Group’s Expenses. £0.00 Costs of all goods. No goods purchased. £0.00 Benefits received by the No benefits received. £0.00 group or individual Members from outside bodies. Any secretariat or other No financial support £0.00 support. received. Services provided to the Group such as hospitality. All refreshments paid for by Haemophilia Wales Date Description and name of Cost provider 6 July 2016 Teas, coffees, sandwiches £58.60 and biscuits 23 November 2016 £58.60 18th July 2017 £196.14 Total cost £313.34 Annual Report Cross Party Group on [include name of Group] [Date] .
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