Three major meetings in London all in one day but the running around was all worth it.
Many things were covered in great detail Our first was at 10.30am with the Medicine Healthcare Regulatory Agency (MHRA), the third meeting we have had with them since August Janet and I (INFACT) have been working with MHRA since 16th August 2013 Such an intense meeting, considering the lead up to the European Review into Epilim. This was discussed at the meeting also, and we will let parents know about this when they have come to their findings.
One of the topics was the Yellow Card Scheme. At that last meeting we brought up the fact that the yellow card scheme was designed wrong. We felt that MHRA were not covering aspects related to medication Epilim and other medications. One of the many points we raised at the meeting we had was the fact that when a person reports an effect of a medicine they couldnt report the effect on the Foetus/baby. The Yellow Card has now been updated so if any mums on AEDs or other medication feel their medicine is affecting the baby you can now report this more thoroughly. We are encouraging parents to go and fill in this card so it can be reported, (Please click link below)
The 3rd meeting at 4pm was with the Department of Health which was a success and we look forward to more involvement there too. INFACT are now working with the Department of Health on a number of topics and new strategies ensuring that women on Valproate do receive knowledge about this medication.
However the second meeting of the meeting of the day was the most important one of all and one which we had waited for and that was with SANOFI..!! INFACT have been in correspondence with Sanofi for a year now. Our first engagement with them forced by the Civil Disobedience and one which hopefully proved to them the INFACT & FACSA are not going away. We strongly reiterated to them that our campaign will carry on until every child with a diagnosis of FACS has been compensated. We will keep you updated on this.
For anyone reading this, who knows ANYONE who has a diagnosis of FACS, I cannot reiterate the importance of registering to our National Database. Things are already up and in motion, due to the huge scale of affected persons, but you do HAVE to be registered for things that will happen in the future.
We have also held meetings with our Solicitors and had correspondence from LSC , basically any case being put forward for any matter concerning Anti Convulsants in Pregnancy (ie child with a diagnosis of FACS) will never receive any funding and that goes for families going through solicitors who claiming to do it “No Win No Fee” (as this has to have funding also) A solicitor will have money to investigate claims but when it comes to the next step and court action LSC refuse to fund due to so much being spent on this matter already. That is why it is so important any child with FACS, is on our National Database as we know now through INFACT it is the only way forward for our children.
We have a lot of new information to bring to parents in the next few months but as we always do, we only report on these after the event. The reason for this being is that we dont want to get parents hopes up and also there are still members of the public that seem hell bent on destroying the campaign and work we are both doing for ALL our children. We do not get paid for this campaign it is all voluntary and comes out of both our pockets. I hope also people remember between us we have 7 children ALL affected with FACS. We try and answer emails/ questions ASAP but we do, like yourselves have day to day hospital apoointments etc with our children too.