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APPG on Haemophilia and Contaminated Blood – Latest Meeting

The APPG on Haemophilia and Contaminated Blood met on the 29th March.

The Agenda for the Meeting was:

  1. Introductions and Apologies
  1. New Contaminated Blood Support consultation
    1. Aspects of the new proposals
    2. The new scheme administrator
    3. Plans for engagement
    4. Proposed meeting with Lord O’Shaughnessy
  1. Update on actions from the last meeting
    1. Expanded membership of the APPG
    2. Hillsborough-style inquiry and letter to Bishop James Jones.
    3. Submission to the Health, Disability and Work Green Paper
    4. Update on correspondence with Alliance House and scheme administrator trustees
  1. Dates of the next meetings
  1. AOB

The actions agreed at the meeting were:

  • To include a discussion of the remit and focus of the APPG at the next AGM
  • To write to the Minister regarding the proposed meeting and the support scheme (available here)
  • Invite members and affected individuals to put themselves forward for the proposed User Panel and Working Group on benefits and contaminated blood
  • To schedule a meeting with the Chairs of the discretionary Alliance House charities

Future meetings are planned for Tuesday 18th April, Wednesday 21st June and provisionally Wednesday 11th October. Additional meetings may be scheduled as required.

The minutes of the meetings are available here: APPG meeting minutes 29 March 2017 final.

Attendees are the meeting also referred to the Haemophilia Society’s Statement on Contaminated Blood and a letter from Alistair Burt to the DH.

 

 

Jefferson Courtney

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2 Comments

  1. Martin 7 months ago 5th April 2017

    A representative from my MP s Office ask questions of the new proposals of course as always the answers were very vague if at all. The proposals that were made in 2016 were to what the government said “the needs of the victims infected” , i’m not sure how my needs have changed because people have been infected worse than what the government first thought.
    Surely the pot needs to be bigger and maybe a consideration that funds are taken from a disaster fund rather than the NHS. It is after all the greatest disaster in NHS history !!

    REPLY
    • PAUL 7 days ago 16th October 2017

      Hi I was contaminated with hep c I Had to have interferon injections which both have made my life hell I was told sometime in the 80s that I had hep c which then destroyed my first marriage as she use to say I was deseased which obviously led to divorce and since then it’s not been worth living as I am constantly in pain from joint bleeds I cannot walk without crutches which then is only 20 yards on a good day ! I also cannot since having the interferon go anywhere alone as I feel very vunruble and scared I’m in constant pain which I take morphine and lots of other medications for daily i can’t sleep even with 30mg sleeping tablets and lots of other opiates all prescribed by my GP and PAIN CLINICIANS the pain and lack of sleep and not being able to go anywhere alone are unbearable and the factor 9 and then the interferon was supposed to make you better but to me it killed everything I had to live for ( and I’m a lucky one who got through this disaster ) I get small payments from the Skipton fund which pay for my taxi’s to and from hospitals and GPs which are a godsend as I’d wouldn’t be able to get there and home otherwise as Im to afraid to use public transport anymore I’m no longer able to work with the pain and arthritis in all my joints and now with having to use crutches I have tendon damage ( what a life ) but like I said I’m a lucky one that’s still alive but think the government need to do a lot more not just hide from this disaster that should have never been !

      REPLY

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