THE HAEMOPHILIA SOCIETY

We thought it would be appropriate to set the record straight with regards to the Haemophilia Society (HS) and its appointed trustees to the board of the MFT.

There are currently two trustees who sit on the board of the MFT. They were appointed by the HS, but the CEO of the HS has reported that they hold no jurisdiction over their appointed trustees whatsoever. So what’s the point of them you may ask? That’s exactly what we would like to know too!

Until January 2015 there had been three trustees appointed to the board of the MFT, but one of the trustees decided that he could no longer remain in his position at the MFT and continue to witness how the CEO and Chairman of the MFT run and control the trust. So he decided that the right thing to do would be to resign and write a testimony about his experiences at the MFT. This testimony was then given to the APPG, in order for them to be informed and take action.

Following the APPG report earlier this year and the airing of the testimony, a request by beneficiaries was made to the HS asking it to withdraw the remaining two trustees from the MFT, as it was felt that their positions on the board had now become untenable. The CEO refused to do this, stating that the trustees were more use left in place. This we find unacceptable. We find it highly irregular that one trustee should step down and report his experiences, whilst another two stay in place and say nothing, even though they are well aware of the situation themselves and the many other questionable issues at the MFT.

Both the CEO of the MFT and the CEO of the HS have stated that the trustees do not represent the beneficiaries in any way. So the question has to be then, what use are they? The answer, we believe, is none!

We will, therefore, make further efforts to expose this questionable set up too.

Other information that we would like to get to the bottom of as well comes in the form of information banded around by the HS to the community. It includes:

 

  1. That the HS was instrumental in having the 2014 survey by the APPG established, so that the community could be canvassed for their views.

We would be very interested to hear exactly when the HS were part of any meeting where this idea was proposed by them, or needed them to push for its establishment. The information we have says very different to the HS version of things altogether.

 

  1.       That listening to the community led the HS to ask the APPG to hold a formal inquiry into people’s experiences of the Trusts so the HS could have a document that brought together the many distressing stories it had heard over many years.

Again, we would like to have clarity as to when the HS started to collate information about the various trusts, considering there had been no mention whatsoever about this before Alistair Burt MP and the APPG took up the cause and decided to canvass the community.

Once again our understanding of events differs from that stated by the HS. As we understand it, the information requested about the trusts was made by Alistair Burt MP and the APPG, not from the HS.

We are uncertain if the HS has inadvertently overstepped its position as secretariat to the APPG, but we cannot allow the community to be misled into thinking that advancements so far have been the work of the HS and not their MPs, Alistair Burt MP, or the APPG. This would undermine the very people who have brought us this far.