FACT Trust are now in the 2nd phase of our timetable. A number of meetings have been held with the Thalidomide Trust and I can now officially say that we are now working with them and they have now put a timetable of work we have to do as a Trust. Basically we are following the same steps they went through to achieve success. Years ago guidelines were put in place so that “supposedly” Thalidomide would never happen again. Financially they were successful as all the victims were paid out by both the Government and the Drug Company. They have now looked at our figures and the number of children affected by Facs Syndrome and in a way have seen it as a kick in the teeth, as what was supposed to have been stopped has happened all over again. There were over 500 Thalidimiders, FACS numbers are in the thousands. Who better to get support and guidance from??
With regards to meetings in Parliament with MPs, it couldn’t be going better. Every MP we are meeting are aware and astonished by the numbers of children even adults affected and also the fact it is still carrying on. 3 parliamentary questions have already been submitted and we are currently working with a number of MPs about getting a Westminster Hall Debate in before Christmas. This is when a number of MPs from all parties put a number of questions to either the Prime Minister or A particular minister, so FACS will be discussed “In House”. Other things are also planned and starting but at the minute I cant speak about them as we are still working on them. (Much as it kills me not to tell you)
There is a huge amount of work involved and with that its looking like I could be in London every 2/3 weeks. When I’m away I miss Joe and the kids loads. Not being in our mayhem, playing hairdressers with the girls, scrabble with Luke, watching Peppa Pig with Kian and to a degree its weird not hearing Joes snoring. It is for them and the thousands of children affected why I do this. Who else is going to do it??? FACS has overtaken our life. We live with the symptoms every single day as do all the other mums whose children are affected. It’s not about the glory of it ie being in Parliament and meeting all the high profile people. It’s about ensuring that all the children affected are financially secure for the rest of their lives. But also that YES it was the drug companies fault, warnings should have been given and they and the Government should accept responsibility.