We stand with those affected by the misuse of sodium valproate
The following article appeared in The Sunday Times this week, relating to the use of sodium valproate, a drug given to pregant women with epilepsy over many decades without proper warnings.
https://twitter.com/thesundaytimes/status/1515380329598668810
In response to this article, SUDEP Action stands by the women, children and families affected by the misuse of sodium valproate. Their stories have been neglected for too long and lessons must be learnt by Government, its agencies and the Health Service, to urgently protect others and recognise the damage done. As this issue gets widespread attention, we can't help but think of our bereaved families, who like the valproate victims, weren't given vital epilepsy risk information - which could have saved the lives of their loved ones. Many of their voices remain unheard and lessons from the deaths yet to be learnt.
As we watch this issue gain deserved public and Government attention, we urge people to be clear about ALL risks that women with epilepsy can face. While it is often said 'don't stop taking your medication', some messages fall short of explaining why.
SUDEP / premature death is a real risk for people with epilepsy. Not taking medication is a key risk factor. Anyone with epilepsy, including pregnant women, must have these safety risks discussed with them so they can make informed choices about their medication, treatment and lifestyle.
It is vital that SUDEP / mortality risk discussions happen alongside the sodium valproate discussions. This is why we're playing our part and have info about sodium valproate risks already in our SUDEP & Seizure Safety Checklist (for clinicians) and our EpSMon app (for people with epilepsy).
Without these messages going clearly hand in hand, we fear that some women may only get partial information about risks and make uninformed choices, potentially leading to more preventable deaths happening.
The 2020 MBRRACE report flagged up that epilepsy deaths in women have doubled. We worry this will only have worsened due to the Covid-19 pandemic and the impact on access to epilepsy services. We believe it is vital, as a community, we do all we can when discussing this issue, to speak clearly and specifically about epilepsy and SUDEP risks, to avoid unintended harm.
Find out more about:
Epilepsy risks www.sudep.org/epilepsy-and-risk
Our EpSMon app www.sudep.org/epsmon
The SUDEP & Seizure Safety Checklist www.sudep.org/checklist
Pre-conception/pregnancy advice https://www.womenwithepilepsy.co.uk/
If you've been bereaved by epilepsy, we are here for you: https://sudep.org/someone-has-died ([email protected] or 01235 772852).
