Last night's Newsnight

[musicalfrog]

I haven't seen a thread so apologies if there is one.

The last lady interviewed, Karen Buck was on meds for epilepsy during her pregnancies which harmed all four of her children. It was a very moving and heartbreaking interview. I've never seen anything like it on Newsnight before. It's on iplayer I believe, and there are some clips on X/Twitter.

Towards the end I think she was making the point that the only reason anyone finally acknowledged the problem was when they were told that men's sperm were also affected while taking the meds.

Does anyone know any more about this? Was this another cover up, like the PO scandal?

Also wondering if there is any resources the lady can contact for help. She was clearly desperate. I thought she was incredibly brave to speak out in the way that she did.

Hadley Freeman's written something about this very recently. She has epilepsy but was lucky and her GP took her off the medication before she got pregnant. It was mostly a personal account. I don't have a ST subscription so can't share the article but she posted it on her Twitter page without a paywall.

Ah, thank you @Floisme I'll try and find it.

Here's the thread. If you click on the pic the article should open without the paywall, at least it did for me, hope it works.

https://twitter.com/HadleyFreeman/status/1751537143141298619

Some of the comments under Hadley's article were very sad with parents talking about the impact this had on their children and families. A very chilling article when we consider the toxic drugs some young people are being offered with zero thought about the impact on their infertility and potential pregnancies.

For the past twenty years I've had the same neurologist, who has always been very pressing that I need to use reliable contraception and tell him if I wanted to TTC. When I decided to, it took a year of adjusting meds before I could try, as some are safe in pregnancy, others aren't (Floisme, just a slight correction - Hadley's doctor adjusted her dosage, not took her off meds: that could be dangerous in itself). Until the Sunday Times campaign started, I'm afraid I presumed that all consultant neurologists would be aware of the risks and be as thorough - I am still angry that so many families are suffering needlessly.

Even with my neurologist recommending a section, I still had to fight for one. In the end I think it was recorded as maternal choice, which it really wasn't. And don't get me started on the midwives pushing me to breastfeed when the paediatrician had point blank said it would be dangerous for DC...

Floisme, just a slight correction - Hadley's doctor adjusted her dosage, not took her off meds: that could be dangerous in itself).
Thank you @tresfatiguee ! I was posting from memory and should have checked first.

@Floisme sorry if I seem pedantic, but stopping epilepsy meds altogether is generally dangerous in itself.

Not pedantic at all @tresfatiguee, you're absolutely right to correct me

just a slight correction - Hadley's doctor adjusted her dosage, not took her off meds: that could be dangerous in itself).

In the article she says "I am lucky that my doctor altered my epilepsy medication when I told him I wanted to have a baby."

It doesn't say it was a different dose. I assumed she had been given different medication. Is there a safe dose for sodium valproate in pregnancy? The NHS site suggests not:

Sodium valproate is not recommended if there's a chance you could become pregnant. If you're taking sodium valproate and want to start a family, it's important to talk your doctor as soon as possible. This is because taking sodium valproate while pregnant can harm your baby.

No, there's no safe dosage - altered her meds is correct, rather than dosage. I was so busy being pedantic that I made a mistake myself Sodium valproate should be a drug of last resort and in an ideal world would never be given to men or women of child-bearing age. Unfortunately we live in a world where epilepsy research is woefully underfunded, that's never likely to change.

I was once a midwife and I'm trying to remember here what we used to do. Certainly never take yourself off meds, it should always be done under the instructions of someone qualified and most of us imagine our doctors to be qualified to guide patients through this. But clearly they aren't all competent to do that. I think any of us can now check the British Pharmacopeia online, which is a complete listing of drugs, dosages, contraindications etc etc, so you can at least enter into a conversation armed with some knowledge.

There are often new drugs developed, of course, which become game-changers and it's possible a GP hasn't kept up to date with them.

One thing I do remember from midwifery days is that the patient often assumes they'll come off the meds when pregnant when this is not so at all, and the dose might even be increased due to haemodilution (you have more blood circulating in pregnancy and it is diluted, compared with your non-pregnant state). And with epilepsy, of course, you have the great danger of fitting and striking your head in a fit, which can be fatal. None of this is easy at all but the big thing is that we need medical advice we can trust to be accurate.

I'm trying to remember the court case I read about a few days ago when a midwife told a woman she shouldn't be taking a particular medication when pregnant, so she stopped it and she died, her baby too. But the midwife had asked two doctors about it and that was the advice they gave.

Get as much information as you can: be proactive.

That's so sad @Rightsraptor

I've had some maternity training through work in the past. From what I can remember epileptic women having babies is a relatively new thing as it never used to be safe at all. I'm glad there are routes available for them to do it now, but obviously has to be handled in the correct (and informed) way.

I'm also reminded of being prescribed roaccutaine years ago (for chronic acne) where it was very much impressed upon me not to get pregnant while taking it, due to the dangers to the unborn baby. I think even had to take a pregnancy test before starting it.

I have looked after a small number of patients who either had babies harmed by them taking Valproate in pregnancy or looked after the babies/children themselves. I can’t remember when exactly but for some years (possibly pre-Covid) it has been a national patient safety directive to have (and document) a discussion with all women taking Valproate about the need for reliable contraception while taking it and the need to have pre-conception planning too. This comes up as a prompt on the GP records system we use when we prescribe it too to try and ensure it happens.

I think any of us can now check the British Pharmacopeia online

I don't think anyone can do that. I use the NICE site which seems to have all the information.

I don't think it still happens, it's even asked about by pharmacists at dispensing now (could you be pregnant) and GPs are aware?

I don't think it's a cover up, but it is related to the lack of communication between consultants - I can imagine the neurologist thinking that the obstetrician would be dealing with it and the obstetrician assuming the neurologist had signed off on it and neither living in a world where people with no medical understanding get pregnant accidentally.

I had a situation where a medication for one condition negatively impacted another. I would see consultant 1, who took me off it and wrote a letter to consultant 2. 6 months later I would go to consultant 2, who would put me on it and send a letter back. On, off, on, off for a couple of years until I made my own decision. Sending stupid letters to each other when they were literally separated by a car park every day of their working lives. Surely it would save the NHS a fortune if they had two appointments less at the end of each day and used that time to phone other medical professionals to sort things out.

This has been well covered by Shaun Lintern in the Sunday Times (Hadley Freeman mentions him in her article.) Worth reading.

I am delighted to come across this chat about toxic drugs taken by mums during pregnancy. Unfortunately I was one of these women that was told that sodium valoporte was a very safe to take during my pregnancies. Unfortunately the results was life changing for me and my three adult children. Who were effected by this poisonous drug with mental and physical effects. The government and health services don't seems to care .

I am so delighted I came across this topic about toxic drugs in pregnancy. I was one of these mum's that trusted my neurologist with my care and unborn babies that sodium valoporte was a safe drug to take. Years later I found out that a took a very toxic drug that had harmed my children who are adults now
But have to live with consequences off me taking that drug.

So very sorry to read this
It seems that the scandals in pregnancy / maternity care never stop.

Thank you. 😍

So sorry @ForPerkyMoose it's so unfair. 💐

British National Formulary(BNF) is freely available if you want info on specific drugs.
https://bnf.nice.org.uk/

Theres also LactMed which is info on drugs for women who are breastfeeding. https://www.ncbi.nlm.nih.gov/books/NBK501922/

Thank you means alot