Independent Medicines and Medical Devices Safety Review

Liz Twist Excerpts

Thursday 8th July 2021 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I thank my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) and the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) for securing this important debate and the Backbench Business Committee for making it possible.

I want to talk about sodium valproate and the impact it has had on so many people, including so many children of women who were taking that drug, and I want to talk about my constituent Bethany Dodgson, a young woman affected by foetal valproate syndrome. She speaks up on this issue, and she tells me about her difficulties and the more serious difficulties experienced by her brother every day, as well as about her role as a carer in her family and how they have to live with the consequences of foetal valproate syndrome. I also want to pay tribute to Janet Williams and Emma Murphy from INFACT—the Independent Fetal Anti-Convulsant Trust—who have done so much to campaign on this issue, and to all those other women and other people who have campaigned on this issue.

It is really scandalous that we still have children being affected by foetal valproate syndrome today because their mothers were not aware of the risk of taking sodium valproate. People have campaigned, as Emma and Janet have campaigned, and they have been through records and talked to an endless number of people to try to ensure that women are made aware of the risks of taking sodium valproate, but still we see people being harmed. One year on from the Cumberlege report, “First Do No Harm”, what we have seen on this issue is one letter sent in the last few weeks to warn women of the risk. There have been attempts in previous years, with greater or lesser success, to ensure that doctors were aware and warned their patients, but much more needs to be done actively to ensure that no more children are harmed from their mothers taking sodium valproate.

I would like to talk a bit, as others have, about the recommendations of Baroness Cumberlege’s report “First Do No Harm”. The first thing is the patient safety commissioner, which has been accepted. I am aware that there is movement, but still we have further delays. We have a consultation on the role, and we have extended delays. This is a really significant and important role for the future, and I would urge the Minister and the Government to act swiftly to ensure that the patient safety commissioner is in place.

Secondly, I want to talk about having a redress agency. Going to the law is no answer for the people who have suffered from any of these syndromes. In itself, that would be further torture and a trial on top of what they already have experienced. I endorse exactly what Baroness Cumberlege said in her report: there must be an independent redress agency to stop the pain of people having to keep on fighting—fighting in law—for their rights. I hope the Government and the Minister will be able to accept that, and then individual schemes for each condition can be set up for redress. These people have already had to live for years with their views not being heard, living with the physical consequences for either themselves or their family of the drugs or treatments they have had. Please can we get on and set up this agency now? It is really vital for those people. They do not deserve to have to fight in a different place to achieve that redress, so I hope the Government will look at that.

Then there is the patient reference group. Although it has been set up, there are concerns that there is not sufficient continuing patient involvement in the work that has to go forward. I urge the Minister again to look at that, and to agree with patient groups how they can be involved in future and how we can learn the lessons about what happened to them as we go forward so that this cannot happen again.

Let us be clear: we are talking about a medical issue in medical terms, but this is a women’s issue. It is an issue of women not being listened to and their concerns not being heard, and of action not being taken. Frankly, it is just not good enough. We certainly need to learn the lessons going forward. The Government must act now and we must find a way to prevent further harm to women. As we develop and consult on the women’s health strategy, we need to make sure that we are learning these lessons and the lessons of so many other cases where the voices of women have not been heard and listened to effectively. The title of the Cumberlege report is “First Do No Harm”. It is vital that this principle is looked at when we consider the women’s health strategy.