To draw your attention to this absolutely shocking medical scandal...

[Tenegrief]

I heard about this because I know someone who has been affected. Posting here for traffic.

All the terrible details are in this Guardian article:
https://www.theguardian.com/society/2024/feb/22/the-mothers-fighting-a-scandal-bigger-than-thalidomide-we-were-told-the-medication-was-safe
But, in summary, pregnant women with Epilepsy have been prescribed a drug which was known to cause harm to babies in the womb. Despite the drugs company, NHS and government knowing about it for a very long time, and regardless of the tireless campaigning of the people affected, the drug has continued to be prescribed with often devastating consequences. The article above states that an average of 3 babies a month are born affected... So, if you know an epileptic woman who is TTC or pregnant please make them aware.

I can confirm that SV is currently not prescribed to women who are or planning to become pregnant. It is used to manage MH conditions and I came across it many times when I was working for a crisis team and on acute wards. If a woman of child-bearing age needs to take it, she is being informed of risks and in cases where they don't have capacity to make decisions about their reproductive health, it won't be prescribed unless they have a contraceptive device in situ. This doesn't mean that those who have been made aware of risks cannot subsequently make a decision to ignore them.

It’s really bad. As a midwife we were told it was safe, women carried on using it. I remember one baby being born with terrible deformaties which they put down to the drug and locally we were then telling women to stop using it. But took a bit longer nationally I believe.

Absolutely terrible.

My son takes this drug for epilepsy and the packet now carries a warning for women and girls. But it's too late for all those women and children who've been affected. I hope they receive massive compensation. Their children will need extra care for the rest of their lives.

Good to hear it's now not being prescribed but, my god, I'm blown away by how long it's taken them to get to that stage. Really feel for all the people who have been affected.

I took Epilim from from 1987 for over ten years and was told of these risks.
It was the neurologist who told me. I am not sure how often but it was definitely mentioned.
Don't know if the GPs were aware. I don't think they told me.

There are a lot of drugs where if you're a woman of child bearing age you are put on birth control at the same time. They simply will not prescribe it if you're sexually active without birth control. I believe this is one of those medications

I remember Epilim having warnings when I worked as a pharmacy dispenser in 1999-2001. I specifically remember the GPs discussing it with us on a training day - we were a rural GP surgery with a dispensary attached.

Recommend looking at Shaun Lintern’s articles around this…..

I have a friend with epilepsy when we were in our 20s (mid 80s) was on this but she was either told or knew because it was on the leaflet that she wasn't to take it if pregnant, as I remember her having to change medication and being worried about having an epileptic fit again as it'd mean she couldn't drive for a year and there were no buses or shops where she lived (rural) so it would have been a massive inconvenience with a small child. I guess most people don't tend to read the small print even if their GP doesn't /didn't mention it. Always a good habit to read the small print before taking the tablets.

Interesting responses. The article seems to suggest that there was no warning on the drugs (intentionally, because it might cause 'needless anxiety'), hence the government agreeing to a programme of compensation for those affected. The person I know, for example, who's 14 year old son is profoundly affected, was not warned or told not to take the drug when pregnant. So, it seems it was a lottery - if your GP/midwife/pharmacist was aware of the risks with this drug, you may have been told but, if not, you wouldn't have been. Which is a tragic scandal.

Currently there are very strict controls in place on prescribing valproate to women of child bearing age. Similar to Roaccutane.

In the early 2000s when I was a junior Dr it was certainly known that these medications were teratogenic and should not be prescribed to pregnant women but there was not the statutory regulatory framework in place to stop Drs doing it/ ensure patients were warned. It was clear they ought to be warned but not really clear that they actually were warned or whether patients really understood the seriousness. No-one would have prescribed it to anyone who was pregnant or planning a pregnancy but there was a lack of appreciation of how many pregnancies are not planned.

I remember that as a registrar after one of our patients had a baby who was affected I went on a bit of a crusade to get women off valproate or at least get them on long acting contraception but my (largely male) consultants thought I had a bit of a silly bee in my bonnet about it. They knew the risks but they just didn't think it was so important vs controlling seizures or mania or they thought the women should be more personally responsible about not getting pregnant and did not see it as the prescribing Drs issue. The people we were seeing were often vulnerable learning disabled (association with seizures) or chronically mentally ill (mood stabiliser) and I felt it was unrealistic to think they would always protect themselves even if they were informed. It's a good drug for what it's good for but there was a period where it was overprescribed for the wrong indications as well. I am so glad it is properly regulated now.

My friend with epilepsy has 2 children with asd/adhd. Ages 12/10
Both slow to walk and talk. I would say one may have the features.
I know she said the paed thought maybe the epilepsy meds (though i dont know which one she was on)
But even with the speech delay there was no early intervention.
There was no quick referral for asd etc abd this is pre covid...

So it is not JUST that government or nhs have allowed people to continue to be prescribed meds but that there is little support.
And really no wonder kids are waiting so long for asd diagnoses when kt doesnt even get rushed through when the chances might be up to 46%. And obviously higher for younger sibling of asd child.
So the costs to the families, nhs and education.
Where children may need sen schools. Plus mums unable to work full time.

Also the obvious if it was said after dc1 then many would have come off the meds for dc2. Or not had a second child.

And when children are young the parents think the dc will perhaps grow out of issues. (Which could still happen) but easier to prepare if you know if its likely or not.

My dc have some sen. It would be easier to have known. And also less blame on parenting.

Also we know the pill goes into our water supply. What is the likelihood of drugs like this being in our drinking water. Men will still be prescribed.

If as in the article a mum had 5? Kids while on the meds, what would the costs have been. But also the impacts on the possibly small primary or secondary school.

People take risks havong kids but decisions would iffer for most if such high risks were known

As said up thread the advice that women use two contraceptive methods while on SV has been in use for a long time.
MHRA warning to doctors went out years ago.
GP are supposed to keep a register of patients with epilepsy, and these patients are supposed to have yearly review with their consultant.
It falls through the gap who of these two groups are responsible for reminding the patient about contraceptive needs...plus there is the personal responsibility of you have been told and you choose to ignore the advice

If you use the brand name, a lot of people who were prescribed it fir bipolar won't realise it concerned them.

Mind you, when I picked up a first prescription for somebody, I asked if the patient information leaflet was in the not original box and the pharmacist said she didn't need it and if it went in the boxes, the person won't take their meds. 2008, that was.

So, it seems it was a lottery - if your GP/midwife/pharmacist was aware of the risks with this drug, you may have been told but, if not, you wouldn't have been. Which is a tragic scandal.

Nope. I can’t speak for midwives but all Dr’s and pharmacists have had this information for donkeys years. The problem has been some patients are not really in the space to absorb the information they are given for various reasons; or it fell through the gaps with GP’s thinking the specialties who initiate will take care of that aspect and the GP’s thinking the initiating specialties will have gone through it; or in some cases decisions were basically unilaterally made for patients that taking it was the lessor of two evils (not endorsing it or saying it was right but I definitely observed this in situations decades ago.

Valporate is a major factor in my choosing not to have children. When I got together with my partner, we discussed having children after a while together, we were both on depakote as mood stabilizers. I'd been on it for 14 years at that point, he was around the 10 year mark.

Our own research informed us that any potential baby would most likely have the odds stacked against them even before they were born especially with both of us taking it. We both tried to discuss with the consultant psychiatrist who felt we were "reading too much into it" and you "can't believe things you read online".

We have both been moved off it in recent years, the decision to wean off it was taken out of my hands and was taken off it over a matter of weeks which threw my mental health off out of control completely. Partner was moved slowly to lithium, I'm now on carbmazapine. It showed us the massive chasm between men's and women's mental health care.

But obviously we were reading too much into info sourced from online but when we asked for the option to change medication, it was a straight no way.

Definitely included as part of my pharmacy degree from 2001-2005 and the medication boxes clearly labelled too.

I was diagnosed in 2004 and explicitly told I wouldn't be prescribed SV in case I became pregnant. It's been shocking to me how many Consultants continued to prescribe it to women.

I wish the newspapers would start reporting on the current difficulty in getting prescriptions for certain epilepsy medications filled.

I'm not sure if I'm being a bit stupid, but is there any chance medication can pass through the father's sperm? My brother had severe epilepsy and took Epilim for a very long time before being moved to Tegretol - his partner became pregnant and their scan showed that the foetus had spina bifida and hydrocephalus. They ended up terminating the pregnancy as they wouldn't have been able to cope.

My brother also wasn't informed about the impact of epilepsy medication on bone density, and ended up with terrible osteoporosis. He died of SUDEP.

I've been on a few where this is the case. The first thing the GP checked was whether I was thinking about having children.

Back in 2004 I was given a really clear warning and then had additional consultation appts when I decided to try and get pregnant. I was told to stop taking meds for a period before and duration of my pregnancy so I was interested to see that may have been down to a few particularly engaged consultants over the years rather than standard

@PauliesWalnuts yes I think Epilim can affect men's fertility and sperm as well (see: https://www.medsafe.govt.nz/safety/Alerts/Sodium_valproate_Epilim_use_in_people_who_can_father_children.asp#:~:text=Use%20of%20sodium%20valproate%20in,stopping%20sodium%20valproate%20are%20unknown.)

and also Tegretol (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4662691/#:~:text=This%20study%20shows%20the%20direct%20effects%20of%20carbamazepine%20in%20causing,fertility%20in%20men%20with%20epilepsy.)

I'm so sorry for your loss my grandmother was grand mal epileptic. I remember going with her picking up her Dilantin prescriptions and also helping her after having seizures and helping if she hurt herself.

I was on this from 2002-4 as a chaotic 20 something, I don’t remember a single warning about or discussion of pregnancy and it’s only by sheer luck I’m not in the position of the women in this article.

I'm not in the UK but I've worked in a sub-unit of Neurology since 2011 and that medication has always had a black box warning since at least then. If a female was not on at least 2 contraceptive/preventatives, then they tried different meds. Not everyone can switch however, so they were definitely warned of the consequences should they become pregnant while on that drug.

It now has to have the agreement of two consultants to prescribe to anyone under 50 because of concerns it may affect offspring of males on SV too.