Foetal Valproate Spectrum Disorder: Fatalities

There are drugs for other conditions where I have seen far more radical and determined pregnancy prevention programmes. I have previously identified Roaccutane, where women prescribed it have to have long-acting contraception and produce a negative pregnancy test before they can collect a monthly prescription, not to mention sit with a consultant and go through a very detailed explanation of foetal abnormalities and be given a form to sign stating they will have a termination if they get pregnant. That might sound draconian in the case of valproate, but it would at least mean that every woman prescribed the drug would have had the risks spelled out very clearly.

For thousands of families, the damage has been done. At this point, I pay tribute to Emma Murphy and Janet Williams of the INFACT campaign group, who are the women who have kept up the pressure on Government. They are the ones who have kept digging for information on what was known by the authorities and how long ago. They are the ones who persuaded my right hon. Friend the Chancellor of the Exchequer, when he was Chair of the Health and Social Care Committee, to launch an inquiry into the use of sodium valproate, which The Sunday Times has described as a scandal bigger than thalidomide. Why is it a scandal bigger than thalidomide? Because it is still happening. Those babies are still being born to parents who have simply not had the level of warning and practical prevention measures that they need.

That brings me to redress and recommendation 4 of “First Do No Harm”. I know that successive Ministers have decided that redress should come via the courts and medical negligence claims, but I would like us all to reflect a little on that and the added strain it puts on families already caring for a disabled child or, in some cases, children—children who we now know can have their death caused by foetal valproate syndrome.

We know that the costs of caring for a disabled child are high. We know that in this cost of living crisis the energy costs for any family living with a disabled child will be higher. We know that in terms of physical effort and mental anxiety it is simply harder to look after a disabled child. We also know, unequivocally, that the dangers of valproate were known the best part of 50 years ago, so it is especially tough and insensitive to suggest to those same families that redress should be via a courts system that is itself under immense strain and subject to delays.

The noble Baroness recommended in her review not only that an independent redress agency be set up, but that there be separate schemes for the three medicines or devices covered. Specifically, recommendation 4 states:

“Separate schemes should be set up for each intervention—HPTs, valproate and pelvic mesh—to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim.”

To my mind, the specific relevance here is around the additional care needed, which we all acknowledge, and the bare fact of avoidable harm.

I have three asks of the Minister, and I look forward to her response. The first is for an acknowledgement that sodium valproate has contributed to a death. A young person has died avoidably, and we need the Government to reflect on the very serious conditions that too many babies were exposed to the risk of. What additional controls does she think should be put in place in the light of the knowledge that valproate has caused a young man to lose his life?

Secondly, the pregnancy prevention programme needs to be more effective. Some 200 babies are at risk every year. Is the Minister satisfied that the programme is adequately effective and that the information is properly communicated to women of child-bearing age? If not, what more is she planning to do?

Finally, we need redress. Back in 2019, the disability equality charity Scope reported that a family with disabled children faces average extra costs of £581 a month. That was three years ago. Fuel inflation and food price inflation have increased since then, and the stark reality is that families with disabled children are struggling. These children were, in the words of the “First Do No Harm” report, “avoidably harmed”. It is no sort of redress to suggest that those struggling families resort to the courts.

My suggestion to the Minister, who I believe is dedicated to her job, works extremely hard and can be very persuasive, is the following.