Monthly Archives: February 2016

IMPORTANT 24 February 2016…Responding to Consultation….

Most people will have by now read the Governments proposals for scheme reform.

Many will now be wondering how they should or shouldn’t respond when it comes to filling in the consultation as part of the suggested process by Government.

At this stage our stance is that, owing to the extremely complex nature, and vagueness of the consultation document, we think that given the closing date of the 15th April 2016, there is no need to feel pressured into thinking that you must fill it in immediately.

We are awaiting information that we hope will give further clarity to people, to enable them to fill in the consultation document in a much more informed way.

So in the meantime, please keep a regular check on this thread and we hope to post more information when it becomes available.

Thank you.

IMPORTANT 23 February 2016 …HS appointed MFT Trustees..

Following the receipt of a covering letter and information sheet from the MFT with regards to the government proposals for scheme reform, it has been acknowledged that the decision to send such information to beneficiaries was taken by the board of the MFT.
Of the members of the board of the MFT, there are two trustees who have connections to the HS (Haemophilia Society) and their conduct has been questioned before.
For a second time, we now see conduct from the two trustees that beggars belief.
The MFT have created a terrible sense of fear and uncertainty by sending beneficiaries its take on the financial implications of the government’s scheme reform proposals. As we are well aware, the government’s proposals are incomplete at this stage, but that has made no difference to the MFT who took it upon itself to send beneficiaries information which they must have known would cause distress and anxiety.
Once again the two HS connected trustees keep silent and give their support to the MFT.
How much longer is the HS going to protect these two trustees and hide behind a feeble excuse that they cannot control them or remove them?
Are we once again to take it that the HS will sit by and allow the two trustees to be part of a board that makes decisions that have detrimental effects and consequences on beneficiaries?
The bottom line is the board of the MFT agreed to send incomplete and misleading information to beneficiaries that has caused terrible upset and anguish, yet the HS do nothing.
Maybe it is time that the two HS connected trustees answered to the beneficiaries over their shameful conduct and lack of courage?
Their silence speaks volumes about their involvement and principles.
What else have they kept silent about, and what will they stay silent about next?

IMPORTANT 23 February 2016 LATEST POSTS …. MFT information to beneficiaries…..

Following the recent information sent by the MFT to it’s registrants, regarding the government scheme reform proposals and consultation, a number of primary beneficiaries have contacted one of our members to gain some sort of idea of what the MFT were doing by sending them information which states that the government proposals are not something that would benefit registrants, and by “opting” to keep the existing schemes in their current form, people would not lose any of their support that they currently receive.
We are astounded and outraged at the MFT for producing information that clearly gives a “them or us” scenario, in an attempt  (we believe) to leave no other option for registrants than to opt to stay as things are now.
We find it disgraceful that the MFT has waded into the campaign to seemingly try and save its own skin after years of doing nothing other than being government’s puppets.
1)      The MFT, as pointed out by the current chairman Roger Evans at past PG meetings, is “not there to campaign on our behalf, nor make representations for increased funding, but to simply distribute the funds allocated by government”. We now see a complete u-turn, with the MFT trying to almost influence what registrants should opt for, in the hope they will not be worse off.  We have to ask ourselves, why the sudden interest in our welfare, when it has never been of significance before.
2)      The MFT has gone to great lengths to produce an information sheet, explaining what registrants currently receive in the way of support, versus what they stand to lose under the government’s proposed reformed scheme.  At NO POINT does the MFT make it clear that the current, or any future funding is GUARANTEED ! from themselves.  This is simply because it is NOT.  So, it is appalling that the MFT have implied that registrants would be better off staying with the current scheme set up, and its funding level.  This has produced a false sense of security for some people, and we feel may have created a conflict of interest.
3)      The MFT do not know the parameters of the government’s proposed scheme reform. So, the MFT in our opinion had no right to send information to registrants outlining potential financial losses or gains, when it does not have clarity from the government about every aspect of a new scheme, and how it may or may not affect registrants financially. 
4)      The MFT have caused a great deal of distress and anguish by sending registrants unconfirmed and inconclusive information regarding finances and the impact it could have on their futures. Our understanding is that it would have been prudent to have written to the Minister responsible for overseeing the current proposals and consultation, to seek clarity on what information could have been sent to registrants that would have been helpful, and not had such a disastrous consequence as that which we are seeing now.  It is totally inexcusable that the MFT have taken matters into their own hands and caused such terrible worry and anxiety with their actions.  Yet another reason why the MFT is unfit for purpose, and we are currently taking legal advice with regards to the upset and despair it has caused beneficiaries.
It is well known that MFT primary beneficiaries (due to the nature of their infections, and history) feel extremely vulnerable at the best of times, and stress is a thing to be avoided wherever possible due to the adverse affect it can have on the immune system, and the person’s mental wellbeing. This latest involvement of the MFT has not only caused huge unjustified concern for people regarding their finances, it has created a sense of panic among some people, as they simply don’t know how to cope with what they may be faced with.