Cumberlege Report

Debate between Feryal Clark and Mike Penning

Thursday 3rd February 2022 Westminster Hall

[Feryal Clark (Enfield North) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Graham. I pay tribute to the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) for securing this important debate and for his continued campaigning on women’s issues. We have heard today harrowing accounts of women’s experiences. It is really important that we hear those accounts and that they are repeated over and again, because we need to remind ourselves that these are real human beings who have to live with this day in, day out. It is important that we record that in this House.

I thank right hon. and hon. Members for their powerful contributions to the debate. As a fairly new Member—I believe I am the newest Member in the Chamber—and having taken some time off for maternity, I have spent less time here than most Members present, so this is the first time that I am hearing about the progress that has been made on the Cumberlege review. It is really depressing to hear that we have not made much progress on the recommendations.

The pressing thread throughout the debate has been the patronising attitude to women’s voices, as was mentioned by the right hon. Member for Maidenhead (Mrs May), which continues. I take this opportunity to pay tribute to campaigners for their tireless work around the Cumberlege review—particularly the Association for Children Damaged by Hormone Pregnancy Tests, without which the review would have never taken place and we would not be here today.

We have heard that Baroness Cumberlege’s excellent review looked into the use of Primodos, the use of sodium valproate during pregnancy, and the use of pelvic mesh implants. Those medicines and medical devices have caused untold physical, developmental and emotional harm to tens of thousands of women. It is almost four years since the independent medicines and medical devices safety review was announced, but it is over 50 years since these treatments started to be used and, as has just been mentioned, women have been trying to get their voices heard for decades.

[Sir Mike Penning]

The hon. Lady may be new to the House, but she is doing very well in trying to understand the position. In the case of Primodos, that was not a drug that was going to cure anything; it was simply a tablet that told the person who took it whether they were pregnant. There were other methodologies around at the time that were deemed to be safe, but GPs continued to give out Primodos when they knew it was not safe. It is quite a clear, difficult thing: GPs were giving out a drug years after the relevant bodies said it should not be given.

[Feryal Clark]

I totally agree with the right hon. Gentleman. I am the mother of an eight-month-old, and during my pregnancy I trusted my GPs and everything they said. I was vulnerable, like all mothers, and I believed that they wanted the best for me. It is absolutely devastating that GPs knew the impact of these drugs yet continued to give them out to women. I thank the right hon. Gentleman for that contribution.

I have constituents in Enfield North who were impacted on by these medicines. My constituent Chris was given Primodos in June 1970 to find out whether she was pregnant. Her daughter Emma is now 51 years old and has suffered throughout her life from limb deformation, spinal problems, scoliosis, joint problems and mental health problems. She lives in chronic and intense pain that does not go away, and she can no longer work full time.

The review set out nine ways in which the Government could have delivered justice, made the lives of those affected—such as Chris and Emma—a little easier, and tried to prevent future incidents. Given the shocking accounts that we have heard today—accounts that the Government have been hearing for years—and the evidence in the review, one would have expected the recommendations to be accepted in full, but that is not the case. As we have heard, the Government have accepted four recommendations, but there are two that they have not accepted. They have accepted two other recommendations in part, and one in principle.

I am pleased that there has been an apology and that there is legislation for a patient safety commissioner. I am pleased that there are specialist centres for the care of those with complications from mesh implants, although I hope the Minister will address the serious concerns we have heard about that. I am also pleased about the changes to how doctors’ conflicts of interest are reported.

However, that is not why we are here today. Implementing those recommendations alone is not good enough. The Government have refused to establish a redress agency for those harmed by such medicines and medical devices, or to set up a separate scheme to meet the costs of providing additional care and support to those who have experienced avoidable harm, which would make a huge difference to families in meeting their exceptionally challenging needs every day. My constituent Emma worries about her ability to keep working and her financial stability. If a scheme were available to support her financially, she would not have to worry.

The Government claim to care about women’s health and making a change. Their vision for women’s health, announced in December, is

“to improve the way in which the health and care system listens to women, and to reset our approach to women’s health by placing women’s voices at the centre of this work.”

They then directly cited Baroness Cumberlege’s review, stating:

“Independent reports and inquiries—not least the report of the Independent Medicines and Medical Devices Safety Review…have found that it is often women whom the healthcare system fails to keep safe and to whom the system fails to listen.”

The Government accept the review and use it, but will not deliver on it. They will not truly listen to those who have been campaigning for justice for years and do right by the families. They will not take the opportunity to reset their approach to women’s health and place women’s voices at the centre of their work by implementing all the recommendations.

In November, I wrote to the Secretary of State for Health and Social Care to ask him to consider establishing a taskforce to implement all the recommendations of the review to put these injustices right. I am still waiting for a response. How can the Government claim that they are taking the review and women’s health seriously if they cannot even respond to a letter from a Member?

Will the Minister please commit to implementing the remaining recommendations? If not, will she explain how not implementing the full recommendations of the Cumberlege review changes anything, or helps to create a system that keeps women safe and listens to them? It is time for her to stand up for the families affected by Primodos, sodium valproate and surgical mesh, and for the Government to stand by their vision by implementing the recommendations in full. Otherwise, we will fail these families and these women again and again.

Fibrodysplasia Ossificans Progressiva

Debate between Feryal Clark and Mike Penning

Monday 6th December 2021 Westminster Hall

[Feryal Clark (Enfield North) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger. I thank the hon. Member for Carshalton and Wallington (Elliot Colburn) for introducing the debate on behalf of the Petitions Committee. As we have heard, despite fibrodysplasia ossificans progressiva—or FOP—being an ultra-rare disease affecting only one in a million, more than 111,000 people have signed the petition, including 162 people from the hon. Member’s constituency and 108 from my own, showing the high level of public support for the issue.

I pay tribute to the contribution from the right hon. Member for Hemel Hempstead (Sir Mike Penning), whose constituent, Lexi, has recently been diagnosed with FOP, and to Lexi’s mother, Alex, and father, Dave, who have been instrumental in the petition’s success while also raising awareness and money for research themselves. I was pleased to see that there were signatures from across the country, but the support from Hemel Hempstead massively outweighed that from anywhere else, evidencing the incredible drive and leadership shown on Lexi’s behalf. Again, I pay tribute to the right hon. Member. He and colleagues who have spoken today have all highlighted the issues around the lack of funding and the need to raise awareness.

We have heard lots of excellent contributions, so I also pay tribute to my hon. Friend the Member for Wythenshawe and Sale East (Mike Kane) and the hon. Members for North Antrim (Ian Paisley) and for South West Bedfordshire (Andrew Selous) for highlighting their constituents’ cases and the issues around funding and the lack of awareness. It is incredibly shocking that the only source of funding for research into the disease is from FOP Friends, so I also recognise, and thank it, for the work it has done.

As we have heard, FOP comes from mutation of the ACVR1 gene, causing muscles, tendons and ligaments to convert to unwanted bone growth, starting from a very young age. It debilitates and disables, before progressing to cause immobility and ultimately death. While progress happens at different rates, both naturally and because of the trauma it induces, most people with FOP are immobile by the age of 30.

[Sir Mike Penning]

The hon. Lady has touched on an enormously important point that I did not mention in my comments. Lots of people think this is all about trauma—that it is all about bruising or impact—but for a lot of people with this terrible condition, there is no logic. There is no trauma; it just develops and goes through. We have the two sides of it. Trauma, yes, and that is where the research into this particular condition is so important.

[Feryal Clark]

I absolutely agree. There is a need for investment into research of all aspects of this illness. Life expectancy for people with FOP is, on average, 40 years, which is absolutely shocking. It is a horrible condition that nobody would wish on their worst enemy. It is clear that we all agree on the need to act to improve outcomes for the approximately 70 people in the UK who we know of who are suffering as well as for everyone living with it across the world. Thankfully, we know that action can be effective, both in diagnosis and care.

The average age at diagnosis is eight years old, despite the existence of genetic tests to confirm diagnoses and other signs that occur far earlier than that. Usually, the benefits of early diagnosis are common sense—it is just a matter of time, and time spent untreated is time in which a disease or condition can worsen. However, FOP is different. As I and other Members mentioned, trauma generates FOP activity, worsening the condition and speeding up its progress. Any time spent undiagnosed is time when trauma can occur unknowingly, not least in young children, who are not particularly robust or careful; I have a seven-month-old myself, so I know it is really difficult to prevent little babies from moving around. We do not need to stretch our minds to imagine the accidental trauma that could take place in a child with FOP up to the age of eight.

In the first instance, early diagnosis avoids the need for investigative diagnostic procedures that can themselves trigger irreversible FOP activity in an individual, and it does not stop there. Early diagnosis means other adaptations can be made at home and school, and my hon. Friend the Member for Wythenshawe and Sale East spoke of the adaptations made in school for Oliver. It means that alternatives can be used to potentially damaging immunisations, usually injected into muscle; knowledgeable clinical care can be established; and of course, simple behavioural changes can be made to avoid unnecessary trauma in these individuals. Those simple things can make a tremendous difference, yet the genetic test that can make that happen can be requested only by specialist clinicians, of which there are not many. Given how few people suffer from FOP, the likelihood of that request happening prior to diagnosis seems monumentally low, let alone its happening an optimal time. The directory of approved tests for the NHS genomic medicine service will be updated next April, and we heard hon. Members call for the Government to ensure that the FOP test is included. I hope to hear the Minister commit to heed those calls.

I also urge the Minister to explore other avenues, such as technology to improve doctors’ awareness of symptoms or new born genetic screening, which will have impacts far beyond FOP and could help many of the one in 17 people who live with a rare condition. The Government have already set out their vision for this in the UK rare diseases framework, so I do not think anything new is being asked for today—simply for them to follow through on their promises.

Just as with diagnosis, it is often the case that the most difference can be made to rare diseases by improving standards of care. For those living with FOP, that can also be transformative. With so few specialists or experienced clinicians, it is no surprise that levels of care vary, but that does not mean that the status quo has to be maintained. The nature of FOP means that some activity needs urgent action, and of course, specialist assistance is needed throughout. The UK rare diseases framework offers an opportunity here, too. I am keen to hear from the Minister the Government’s plans to improve care for those with FOP universally through that mechanism and to ensure that all those living with FOP now and in the future get the care that they need.

My final point is a broader one that applies to rare diseases in general. We have many of these debates, and quite rightly, because every person who lives with a rare disease has a different experience. Collectively, rare diseases affect as many as 3.5 million people across the UK. Although individual approaches are needed, a collective approach is also important. I welcomed the publication of the UK rare diseases framework, because not only can collective action help to improve standards of diagnosis, treatment and care, but individual approaches can help others. For example, as we have heard, increased research into FOP could help joint replacements, military injuries, burns, sporting injuries, osteoporosis, heart disease, chronic anaemia, and even brain cancers. That principle will apply across the rare diseases spectrum. It is disappointing that after the rare disease framework was published, the then public health Minister confirmed that no new funding had been allocated. My ask of the Minister, and my question to the Government, is simple: how will the Minister deliver on the priorities that the Government set out in that framework?