Why we must not let history repeat itself

A year after Baroness Cumberlege published her damning report into the health service, Nicola Swanborough, our Head of External Affairs, explains why history must not be allowed to repeat itself.

It is a year today since Baroness Cumberlege published her damning report into the way the health service has treated women, including those prescribed the epilepsy medication, valproate.

We stand side-by-side with the families whose lives have been devastated by the effects of valproate which causes disabilities in up to 50 per cent of babies exposed to it during pregnancy.

The government has issued an apology and committed to appointing a patient safety commissioner going forward. But ‘sorry’ is not enough.

Not only do we want to see the full recommendations of the Cumberlege report implemented, but we also want the government to ensure that history is not allowed to repeat itself.

It's not just valproate

This year, a new review published by the Medicines and Healthcare Regulatory Agency, showed that valproate is not the only epilepsy medication that increases the risk of disabilities in babies during pregnancy. Many of the other widely prescribed drugs also enhance risk.

Only two epilepsy medications are thought to have a safer profile while, for the majority of drugs used to treat epileptic seizures, there is insufficient data to say whether they are safe or not.

This means that in the 21st century, many women are faced with a choice between drugs which control their seizures but may harm their babies, or drugs which will be safer for their babies but will leave them vulnerable to seizures. And seizures, too, can be harmful, especially during pregnancy.

The most frustrating part of this dilemma is that science could sort it out.

What our genetics could tell us

Science has been able to lead us out of the pandemic, and science has the potential to understand why certain drugs cause problems for some women and their babies while they are safe for others. 

By sequencing the genes of all women with epilepsy during pregnancy, scientists have the ability to ensure that, in the future, doctors will be able to prescribe women properly tailored epilepsy medications that will control their seizures without harming their babies.

But science costs money.

Safe Mum, Safe Baby in the House of Commons

We were thrilled today to hear Emma Hardy MP highlight in parliament, our Safe Mum, Safe Baby campaign calling on the government to fund vital research in this area.

Emma was talking as part of her opening statement for the Medical Devices Review Debate featuring sodium valproate, Primodos and vaginal mesh. 

Cat Smith MP, Shadow Minister for Young People and Democracy, stressed that history cannot be allowed to repeat itself, urging people to engage with our Safe Mum, Safe Baby campaign.

We can't turn the clock back

The House was united behind the Cumberlege Report ‘First Do No Harm’. Across all three medicines and medical devices, women have campaigned relentlessly and vociferously to right decades of harm and suffering. And their campaigning has been selfless. No-one can turn back the clock for their families.

But we can make sure that their legacy is that we stop the clock ticking for future generations of women and babies. And it is in the gift of the government to do so.

Joining up the dots

The government has launched its Women’s Health Strategy to address a health service designed by men, for men. It has promised to pump billions into life sciences research. And it has thrown millions into supporting more students into science and technology at school.

But there is no sense in producing world class scientists if we don’t fund them to carry out world-class research.

Ministers must now join up the dots and commit to research that will stop babies from being born with preventable disabilities that mean a lifetime of unfulfilled potential.

Precision medicine

Future healthcare is all about precision medicine, with treatments tailored to our individual genetic make-up. When valproate was first licensed for use in the UK, we did not have the skills to sequence a person’s genes and understand how they are likely to respond to different drugs. But we do now.

It will require time, effort, collaboration and, importantly, money. But that money will free tomorrow’s families from disabilities that should never have been allowed to happen.

The biological clock is ticking

We are waiting for the government to do the right thing. They say they are listening to women and addressing the wrongs of the past.  Then please fund the vital research to stop preventable disabilities in the future. We do not want to be having this same debate in 10 years' time. The biological clock is ticking. The time for talking has run out.

Do not stop taking your medication

It is important that no woman should stop taking her medication without consulting her doctor.

Read more about our Safe Mum, Safe Baby campaign.