Mums Vs Big Pharma 9pm BBC tonight

Thank you so much!

Janet saved me - I would not be the person I am without her, and Emma is just lovely, so lovely!

We've got a good crew of Mums - I've made some amazing friends through it all. I hope one day we will all meet up to celebrate that the children have hot justice.
Xx

We need a Redress package. My son is lovely and I'm so proud of him, but he has a learning disability and he is vulnerable. I can't watch a news report about a vulnerable person who has been taken advantage of or hurt... or worse. It's too close to home.

We will always take care of him, but what keeps me awake is what happens when we have died. We know he has huge loss in potential and earning power and we need the government to make up for that. I need him to be safe, with someone to look out for him and to protect him.

Ultimately, the worst thing is the government not telling us either way whether they will implement a Redress package or not. We can't even plan for the future for him.

Thank you for your lovely words xxx

Gobsmacking that some initial responses here prefer to try to score points rather than engage with the very serious issue raised by the OP.

I watched the programme and agree it is appalling.

I’m a retired nurse and have dished so many of the big purple tablets which are Sodium Valporate.

My patients were all people with learning disabilities and thankfully, given this drug’s side effects, nobody was likely to get pregnant but I still felt a wave of shock at my own unknowing proximity.

@Charmatt I really hope that the programme helps get the justice and the compensation you and your families deserve.

It's like Corby, the polluted rivers and beaches and the PO Scandal (and the water in Flint,Michigan) . So often the little people have to go to extraordinary lengths to be heard and believed. Incredible people.

Thanks OP - nothing wrong with your thread or where you posted. Planning to watch on IPlayer later.

I teach this topic (iatrogenesis for those interested) for A level sociology

@scissy thanks for the correction. @Charmatt I really hope that you and your son get the justice you deserve.

My son was in this documentary last night.
Everything said about warnings has come about because of mother's campaigning. Time and again we were told we were neurotic and over thinking things, but the clear message was that the MHRA did not want to upset the consultants and tell them their job. We were basically told that we shouldn't question things and know our place.

The legal aid was pulled because Sanofi would have produced evidence to show they warned the government. Janet and Emma found the evidence in the National Archives.

I found out through the programme that my neurologist was at the conference 4 years before I had an appointment to talk about pregnancy, where they dismissed Jill Clayton Smith's findings.

At my appointment with my neurologist, I specifically asked him if there was any risk of taking the medication in pregnancy. He told that of course there wasn't and not to take it could cause seizures that might kill my baby.

@YellingAway warnings didn't start appearing (even in the patient leaflet) until the 2010s! I know, because I took it for a while, before the MHRA finally got their act together (thanks to the pressure from these ladies)
However, I did have an excellent neurologist who warned me beforehand and told me to I would need to come off it 12 months before TTC. He was probably being overcautious, but given the evidence...

However, back where I grew up - a friend was put ON Valproate during early pregnancy after a seizure in the late 2000s. Their child had learning difficulties pretty much identical to the families in the programme. Not sure if they were ever diagnosed with FVS - she was told to go on a "parenting course" as a bad parent too. 🙄

I wish people would stop victim blaming the mothers.

Oh and this is bigger than thalidomide. It has gone on longer, and it's worldwide. Ironically the UK are now one of the strictest countries in the world for issuing Valproate, but that are many women affected across the US, Europe and wider.

But hey, we're just disabled women so not worthy of so much attention.

I’m on sodium valproate for what was thought to be migraines (turned out to actually be issues with my TM joint so soon going to start tapering off them).

My consultant and GP were incredibly thorough re risk of pregnancy. Even though I’m beyond child bearing age in my eyes and not sexually active.

Consultant had to do six page risk document, discussion with me and I had to do pregnancy tests.

And we do regular searches for patients on valproate to make sure they’re all covered by the PPP, and don’t take over prescribing from hospital specialists until we’re sure the box has been ticked, so to speak.

Yes that’s no doubt true as well - it’s a long time since I’ve started anyone on valproate so couldn’t tell you for sure but I’m sure you’re right.

I watched this and couldn’t believe that after the Thalidomide scandal, the warnings about this drug were simply ignored and not passed on to women of child bearing age.

Further, it two normal mums to keep digging to uncover all of the facts, including that the government had been warned about this in 1973 yet warnings were not added to the boxes until the 1990’s.

20,000 children were impacted by this, some will never be able to live independent lives and yet the families are still waiting for compensation, completely scandalous.

I watched this, the bit that shocked me was that the Government pulled the legal aid as they realised that when it went to court it would come out the Government was more libel than the drug company!

I think also computer systems are set up to warn us when prescribing. As long as you don't get warning fatigue! The valproate one on our system was hard to ignore or override. (Sometimes it was appropriate to override.

Another case of mum's / women being ignored.

Nowadays we get emails through from the MHRA when regulations are changed around medications, or if new warnings are issued. I don’t know the full history of when that was set up but this seems to give a potted history of the changes to prescribing of valproate:

https://www.rcpch.ac.uk/resources/valproate-use-women-girls-childbearing-years-boys-guidance

As for in the 90s I’ve no idea - obviously the internet was not widely used so I guess there would have been letters sent with important guidance. NICE didn’t exist then. We were, I’m sure, just taught it in our pharmacology (or possibly therapeutics) lectures at medical school, so there was obviously some awareness in the profession even if not as stringently enforced with the more formalised Pregnancy Prevention Programme that is now in place.

The MHRA appears to have been set up in 2003
en.wikipedia.org/wiki/Medicines_and_Healthcare_products_Regulatory_Agency

I dont look at the telly addict section. Why cant posters post where they want

I was taught about the potential dangers of sodium valproate in medical school (late 90s) and we definitely knew when I was doing my GP training that women of childbearing age shouldn’t ideally be on it for their epilepsy. The paperwork surrounding prescribing it (and ensuring contraceptive cover) has massively increased in the last decade but I have always been slightly perplexed as to why the powers that be were making a big deal of it, because as far as I could tell there was nothing new.

Maybe they were anticipating a mass-action law suit…

I am not minimising the impact of this. I am simply saying that this is not new information that BBC "exposed" here. The fact that families have not been compensated is scandalous but the side effects are well known in the medical profession and have been for a long time.