Massive thanks to all the speakers who bared their souls - again - in an attempt to raise awareness about the Government's flat refusal to help those harmed (often permanently) by prescription drugs and devices. I was on the Patient Reference Group, along with some of the speakers here and others, to "help advise" the Government (DHSC) on their response to Baroness Cumberlege's Report. I was representing some of the other drugs that Shaun Lintern referred to here as also causing long term harm e.g. fluoroquinolones, Isotretinoin and more other names than the MHRA would care to admit to. We perhaps naively hoped the PRG would do some good but it soon became clear that we were recruited as yet another box ticking exercise - proof to the public that the Government are really trying (honest!) whilst doing the barest minimum. The only one of the Baroness's 9 recommendations that they agreed to straight away was to appoint a Patient Safety Commissioner - yet here we are 18 months later with the position only recently advertised and the important selection still to be made. I've got myself onto the advisory panel for this job too and note that the meetings will be held in March. It probably won't be until the IMMDS's 2nd anniversary in July when the new PSC is announced. Meanwhile I get about 2 requests a week to join the fluoroquinolone toxicity support group (FQ antibiotics can cause severe disabling side effects, both physical and mental, which are possibly permanent, yet the MHRA say they are "useful"!). These are just the people who manage to find out what has caused their problems. The majority are diagnosed with fibro or CFS or, worse, are simply gaslit and sent on their painful way. Please, everyone, support Julia Cumberledge in whatever way you can to help make sure people suffering from iatrogenic harm are treated with respect and get the help they need. No one asked for this, no one did anything wrong, they simply trusted their doctor who, in turn, trusted the (often lacking) information he/she was given.
FQ information letter.pdf