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Response to the Terms of Reference for the Inquiry Consultation

Today is the final day for submissions to the consultation on the terms of reference for the statutory public inquiry into contaminated blood and blood products.

The Haemophilia Society was keen to contribute in a constructive, effective and proactive manner to this consultation and ensure the views of our members were taken into account.

We endeavoured to reach out to our members as well as the wider community affected by contaminated blood products to ensure our response reflected this range of views.

As well as our series of roadshows where we were able to speak directly to members on their expectations from the inquiry. We are grateful to members and campaigners who shared their views and knowledge through social media and by contacting us by email and phone.

We have urged that an effective Inquiry should not be sacrificed to achieve expediency.  The views we received from people with bleeding disorders and their families are that they have waited an  unacceptably long time for this Inquiry to commence and they wish it to be comprehensive, effective and all-encompassing.

Our final submission is below:

Jefferson Courtney



  1. M Kenwright 10 months ago 26th April 2018

    Question. Was all untreated clotting factor destroyed after the link to all viruses, or was it, as I believe, used until it was all used on patients?

    Why did the Haemophilia Society support the continued use of infected clotting factor saying the benefits out way the dangers?

  2. M Kenwright 10 months ago 26th April 2018

    WHY has HCV infection divided into to stages, unlike HIV that has always been a one payment fits all, This has been unfair for long enough.

  3. Graham Knight 10 months ago 27th April 2018

    To Jefferson Courtney

    Hi Jeff

    First thank you for all your unwavering work on the Bloods inquiry.

    Regarding media, if there is anything I can help with, you or the Media Manager only have to ask. I have had media training and can hold my own if they is aggressive questioning.

    Regarding the destruction of data or medical records. I was a bit concerned when I read through the blocking order and contacted the inquiry team direct. Brian Stanton, Solicitor to the Infected Blood Inquiry subsequently asked me to set down my views of possible sources which aren’t covered by the order. He emailed me today to say he has a meeting with Dept of Health on the 8th May to raise the queries with them. I’m happy to share that note to Brian with the Haemophilia Soc team if it is felt it may be of use.

    Best wishes

    Graham (Knight)

  4. ian hayes 10 months ago 30th April 2018

    Thanks to everyone involved in producing this. It’s an excellent, comprehensive piece of work.


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