Monthly Archives: November 2015

APPG letter to the Chancellor George Osborne

APPG writes to the Chancellor
Thank you to Diana Johnson MP Co Chair and all members of the APPG on Haemophilia and Contaminated Blood for their continued support and excellent letter to the Chancellor.

Click below to see full letter
APPG letter to Chancellor George Osbourne

Update from Diana Johnson MP APPG

Dear Friend,

I am writing further to my email below to update you on the work of the APPG on Haemophilia and Contaminated Blood.

Members of the APPG met with the Public Health Minister earlier this month. A number of issues were discussed, including compensation and how this should be administered; access to drugs and (in particular new Hepatitis C drugs) and other NHS treatments. The MPs who were present at the meeting stressed the need for the Government to act on this quickly. They also stressed the need for a compensation system that is fair, meaningful and conclusive; that recognises the long-term suffering of those impacted and doesn’t unfairly discriminate between different affected groups. This must include family members and widows. We are clear this requires a complete change in the way the support arrangements are administered. We also discussed the Irish HNote of APPG meeting 5 Nov – finalealth card to assist in accessing timely treatment and whether this could be adopted in the UK.

No firm conclusions were made as this was a consultative meeting. However, following the meeting the Department of Health did produce a note of the meeting, a copy of which I have attached. As you will see from the attached note, the Minister made it clear that she would not be in a position to put forward any proposals until after the Comprehensive Spending Review which would decide the Department of Health’s budget. This will not come until the end of November and it is therefore unlikely that any proposals will be finalised before Christmas. While the APPG is disappointed about this delay, we are pleased that the Minister has promised an update before Christmas.

One concern that was raised by MPs the meeting, but not resolved, was the Government’s insistence that any future support or compensation would have to be funded entirely from the Department of Health’s budget. The APPG has consistently argued that the contaminated blood scandal was a national treatment disaster, and so the money required to support those affected should come from Treasury reserves, as has happened with other national issues such as Equitable Life. I wrote to the Prime Minister on this point in September, and a letter in response, which I have attached. I think this letter is a positive step and the APPG will continue to make the case for the Treasury to provide funding directly.

I will email again when I have more information. In the meantime further updates on the work of the APPG are available here:

Best wishes,

Diana Johnson MP
Co-Chair, APPG on Haemophilia and Contaminated Blood

For Diana’s letters please click links below

PM Response to Diana Johnson 23rd October 2015

Note of APPG meeting 5 Nov – final

Statement regarding the Reference Group Meeting 5 October 2015

After the recent publication of the Reference Group meeting Invitation document, TheForgottenFew (TFF) are very unhappy with how the document indicates that the questionable organisation and secrecy of the meeting was not what the DoH intended to have happened, and much could have been done differently. We have witnessed first hand that the wider community, and individual long term campaigners are very angry at the way things were handled by the Haemophilia Society and groups attending, and we have to agree with them that it appears that the meeting was organised and carried out in a very underhanded way.

Going by the date on the invitation document, there was plenty of time for the wider community to have at the very least been informed of the upcoming meeting, and to have been canvassed for views and opinions. Neither of the above took place, which leads us to question why the Haemophilia Society allowed this to happen, and then continue to be party to it. The document raises further points of interest that we will be covering too.

With this in mind, we feel that the community deserve an explanation and intend to take this matter further.
This whole episode in our opinion has once again brought into question the integrity of the Haemophilia Society and campaign groups, and should not be allowed to be repeated.

18 November 2015

Invitation to Reference Group

Here’s an interesting document…. press link to view pdf below:
Invitation to Reference Group (5 Oct)

“As we can only invite a limited number of people to the reference group we would be happy if those that do attend could discuss these questions with others so that they can bring a range of opinions to the session, in addition to their own.”

The invitation is dated 22 September 2015 yet the wider community only heard about the meeting through social media less than 48 hours before – on the Saturday evening. So how did those that did attend discuss these questions with others? Now the community can make up its own mind whether it feels like the organisation of the meeting was transparent or not….