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