Purpose of the Group:

To raise awareness and improve treatment and support for people with Inherited Bleeding Disorders.

 

Membership of the Group

Julie Morgan AM Chair

Lynne Kelly Haemophilia Wales, Secretary

Mick Antoniw AM

William Graham AM

Kirsty Williams AM

 

The Group did not meet with any professional lobbyists

The Group met 3 times in November 2014, June 2015 and November 2015

 

AGM Cross Party Group Haemophilia and Contaminated Blood 26th November 2014

Attendees:

Julie Morgan AM Chair of CPG

Jane Hutt AM

Mick Antoniw AM

David Rees AM

Vaughn Gething’s assistant Temmy Woolston

Sian Mile : Julie Morgan’s assistant

Lynne Kelly : Haemophilia Wales Chair

David Thomas Trustee  Haemophilia Wales

Pat Summers Trustee Haemophilia Wales

Tony Summers Trustee Haemophilia Wales

Richard Gorman Trustee Haemophilia Wales

 

Julie Morgan was re elected as Chair and Lynne Kelly Secretary, the Group thanked both for their work through the year. The Consultant Hepatologist post at UHW is now advertised and the Haemophilia Physiotherapist at Swansea is appointed. The Interim Commissioning Policy funded treatment for 2 Haemophiliacs  who had contracted Hep C via NHS blood products pre NICE approval. It was agreed that the CPG would ask the Health Minister to fund the new Hep C treatment for Haemophiliacs with Hep C who had previously failed Interferon based Hep C treatments.  The absence of adequate financial support provided by the  Macfarlane Trust,  Skipton Fund and Caxton Fund was discussed.  The school uniform grant and winter fuel allowance cuts were causing increased hardship with no provision for life assurance or mortgage protection. The Group noted that the Penrose Report and the APPG Inquiry into Financial support for Haemophiliacs infected with Contaminated Blood would report in 2015.

 

Cross Party Group meeting 4th June 2015, Ty Hywel

Julie Morgan AM

Lynne Kelly Haemophilia Wales

Nancy Cavill assistant to Julie Morgan

Apologies were received from Mick Antoniw AM, William Graham,  David Thomas and Craig Sugar.

 

The Group discussed the publication of the Penrose Inquiry in Scotland and the Prime Minister’s Apology to Haemophiliacs infected with HIV and Hepatitis C through contaminated NHS blood products  on 25th March 2015.  It was noted that the Ministerial Task and Finish Group  was now reconvened, chaired by Dr Chris Jones, Deputy Chief Medical Director. This was welcomed by the Group to help address ongoing gaps in Consultant Hepatology care at UHW and access to new Hepatitis C drugs for Welsh patients.

 

Cross Party Group meeting 4th November 2015  Y Senedd

Attendees

Julie Morgan AM

Lynne Kelly Haemophilia Wales

David Thomas Haemophilia Wales

Nancy Cavill Julie Morgan’s assistant

Apologies : Mick Antoniw AM

 

   The group discussed the appointment of Dr Brijesh Srivastasva, Consultant Hepatologist at UHW and the  £14million funding for new Hepatitis C drugs announced by Mark Drakeford in October. The CPG was congratulated for its work in helping to secure both.It was noted that financial support provided by the Macfarlane Trust, Skipton Fund and Caxton Fund to Haemophiliacs infected with contaminated blood, together with the absence of life assurance and mortgage protection was continuing to cause distress. There had been an increase in the number of hardship grants provided by Haemophilia Wales to patients in urgent need. In Westminster the details of the consultation are to be announced in the New Year. The CPG would clarify the funding of the new Hepatitis C drugs for Haemophilia patients living outside of their Haemophilia Centre’s Local Health Board.

 

Cross Party Group Haemophilia and Contaminated Blood Financial Statement 2014-2015

 

Group’s expenses : none

Cost of all goods : none

Benefits acquired by the group/ individuals / members from outside bodies : none

Secretarial support : no financial support received.