Cumberlege Report

Alan Brown Excerpts

Thursday 3rd February 2022 Westminster Hall

[Alec Shelbrooke]

I am most grateful to the hon. Lady for that intervention. She summarises the entirety of what we are trying to achieve. When I put in the application for the debate, I found no difficulty at all in getting sponsors who were one third Conservative, one third Labour and one third SNP. This is not about the colour of the Government. It is about the NHS, which will be managed through all colours of Government, and has been throughout its life. It is the responsibility of this place, and part of who we are, to do the right thing by people.

I ask the Minister to look at the thalidomide grant scheme and translate it across to those who, as a direct result of the issues raised, will not be able to fulfil their earning potential and will have to deal with physical restrictions and pain for the rest of their lives.

[Alan Brown (Kilmarnock and Loudoun) (SNP)]

As well as compensation, which I think is what the right hon. Gentleman was talking about with “redress”, the Scottish Government, at least, are now progressing with a Bill to set money aside for people to get mesh removed through private surgery, fully funded by the Scottish Government. Does he think that that should also be considered by the UK Government?

[Alec Shelbrooke]

Again, I am most grateful for that intervention, because people are having to turn to private care to get that surgery done—often by the same surgeons. There has always been a conversation about the NHS commissioning private medicine to help it, particularly when it comes to clearing the backlogs caused by the pandemic. That that is important. I will come on to that question in my comments about where we are going.

Recommendation 5 says:

“Networks of specialist centres should be set up to provide comprehensive treatment, care and advice for those affected by implanted mesh; and separately for those adversely affected by medications taken during pregnancy.”

The Government accept the first part of recommendation 5, on specialist centres for those adversely affected by mesh. I regret to tell my hon. Friend the Minister that it is not working. I have a document that I will read from Kath Sansom of Sling the Mesh. She sent me this information. These are women’s voices, in just January 2022. An 83-year-old says:

“I am disappointed. I was expecting help but just offered pain relief and physio. And I now have red inflamed abdominal inflammation. I wanted to know if all these problems were the mesh—the answer was that they don’t know.”

A 64-year-old says:

“Not sure about anyone else, my experience hasn’t been particularly good. For me the wait goes on and on. Offered pain management, didn’t get anything only offered physio. In 14 years I have had enough physio to last a lifetime. Latest offer yet another camera in the bladder, that makes 4 now. First removal 2019, been waiting ever since for stage 2. I feel the longer it goes on, they hope I will give up having surgery at 64 years old.”

Others say:

“After a very long wait to see a specialist in the mesh centre, having scans etc. was told no real problems”—

and—

“Mesh centres are a piece of paper over a cavernous crack!”

Another person says:

“I feel mesh centres are giving us false hope—and then the realisation that it’s all been pointless. They actually admitted at Nottingham that they would watch Leicester removing my mesh so that they could learn how to remove a TOT mesh! They looked disappointed when I said there was no way I was thinking of having it removed. I feel like I would have been an experiment. I’m scared.”

Another says:

“I waited 12 months from referral by GP for my first appointment, then it has taken 3 years of various tests and appointments to get on the surgery removal waiting list. I have been on that list for 15 months so far. In that time, I lost my job that I’d had for over 16 years due to sickness record, I’ve been on the waiting list for pain management for over 12 months, and I am gradually able to do less and less due to the constant pain.”

Someone else says:

“Nottingham mesh centre same pro mesh surgeons that put in mesh in charge of centre referring patients to nearby Leicester Hospital for operation—what’s all that about!! It’s OK having Specialist Mesh Centres, but these doctors need to be trained by surgeons that are doing good jobs.

I’ve been hurt once by these surgeons that put mesh in, I’m not letting anyone near me unless they have done lots of successful removals. the sad thing is, because only 4 or 5 great surgeons do removals, you have to pay private, because their waiting lists are so long.”

Others say:

“Kath, can you highlight the LONG waiting times please and referral to pain management, which has a long waiting list—we are talking years overall when all we want is this damned mesh removing sooner rather than later”

and

“Mesh centres, what mesh centres? Same doctors been under for years. No faith at all. Only know how to put it in, not take it out.”

Another person says:

“Been waiting 15 months, and still no appointment. Was referred to UCHL, which I have heard nothing from, even though the hospital referring has resent the referral a couple of times. Been told I have to go to my local now, which is Southampton which I have heard not one positive outcome from, so basically, funding it myself with credit cards as can’t put up with the pain anymore”

while another says:

“Suffered for years before I found out what it was. My GP referred me five years ago—doctor yawned in my face & denied it was plastic. Told me it was tape. Sent me round in circles for lots of tests and visited 8 different hospitals for mainly painful procedures before I was finally sent to St Mary’s (Manchester) 3 years ago for a translabial scan.

Was sent to Wythenshawe then back to St Mary’s & told I had to see pain management clinic before I could be offered a full removal.

Covid cancelled all appointments in 2020 then I had an SNS trial implant at Northern General Christmas ’21 for bowel control (it failed) & spinal fusion L4/5 year ago for stenosis then got wound sepsis, so back in DRI for two weeks in lockdown last March. Sure the mesh damage caused all this!”

Somebody else says:

“There is a stark contrast between NHS and private, it shouldn’t be like this. I saw Professor Hashim on 1st October, he examined me, confirmed issues and said he could offer me full or partial removal. If I had been able to cough up the money I would probably be getting removal February or March. I am in his area for the Bristol mesh centre so my consultant referred me straight to him after reading his report. I have not had any communication from Southmead Bristol yet, everything I am hearing about Bristol now is that I am going to have to go through the pain clinic and try steroids etc first. Why do we have to jump through these hoops with the same surgeon just because we can’t afford…£15,000”?

Another says:

“Gynaecologist was dismissive and stated that women like me are depriving other women from benefitting from it.”

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[Alan Brown (Kilmarnock and Loudoun) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Rosindell. I congratulate the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on securing the debate. Without being facetious, I think it is the first time in my seven years in this place that I have agreed completely with his entire contribution.

The right hon. Gentleman focused on mesh. I will talk more about sodium valproate, but I agree with everything he said, and I have dealt with a constituent who came to me after her life was ruined by a mesh implant. She was suffering from pain and—others have mentioned this—economic hardship, as she had to reduce her hours at work, but she was lucky that she could still work three days a week. On top of all that, her personal independence payment for mobility was taken away, and I had to fight in Parliament to get it restored. That is a further way in which the state is letting down some of these people. They have already suffered from the operation; then they do not get the support they deserve, let alone the redress we are talking about.

I want to make the case for my constituents Mr and Mrs McKerrow and their daughter Claire. Mrs McKerrow was prescribed sodium valproate and Claire then suffered foetal anticonvulsant syndrome, which has affected her entire life. It has also affected her parents, and they have long campaigned for justice. They tried legal action, but were let down. They have been part of support groups. They engaged with and gave evidence to the Cumberlege review, so I can only imagine how hopeful they were when the thorough and comprehensive report from Baroness Cumberlege was printed.

Paragraph 1.38 states that

“valproate has caused physical and neurodevelopmental harm. We believe that the state and manufacturers have an ethical responsibility to provide ex gratia payments to those who have experienced avoidable damage from the interventions we have reviewed.”

The key sentence in paragraph 1.38 is:

“Patients have waited far too long for redress.”

I can only imagine how disappointed and angry people were when the UK Government ignored that in their response in July 2021. What a let-down! How can the Government ignore the key recommendation, which says that those affected by the interventions reviewed have waited too long for redress? As the right hon. Member for Maidenhead (Mrs May) said, every week is another week that those people are waiting and suffering.

As the right hon. Member for Elmet and Rothwell said, the UK Government have accepted recommendation 1 and issued a full apology, but that apology is somewhat hollow unless they consider setting up a redress scheme for those who underwent these interventions. On one level, it feels like an apology from the Prime Minister—absolutely meaningless. We should not be surprised that the Government have so far also ignored recommendation 3 —that a new redress agency should be created. The report states that such an agency should be

“based on models operating effectively in other countries. The Redress Agency will administer decisions using a non-adversarial process with determinations based on avoidable harm looking at systemic failings, rather than blaming individuals.”

That all sounds logical, and one would think that the Government wanted to address this issue, so hopefully the Minister will explain exactly why they have rejected the recommendation. Importantly, what other agencies in other countries have they reviewed? Baroness Cumberlege said that such agencies operate successfully elsewhere; what review did the Government carry out of those agencies before choosing to reject the recommendation?

Prior to the Cumberlege review, my constituents the McKerrows had made significant progress; they dealt directly with the BBC, professors of medicine, GPs and hospital consultants at each and every stage of Claire’s life in order to demonstrate the link between taking sodium valproate while pregnant, the disabilities that their daughter has suffered, and the ongoing impact on her growth, development and ability to have a normal family life. As I said, they took part in a Cumberlege review meeting and gave evidence. Mr McKerrow explained to me that redress, which we know is morally due, as was stated in the review, would put him at ease by protecting his daughter and addressing her future needs.

The Cumberlege review rightly talks about the psychological damage done to those harmed by the various interventions, but there is guilt for the mothers who took a medicine—social valproate—that caused damage to their child. Of course, they are completely blameless, but that is not exactly how the mind always operates. That is another aspect of people’s fighting to get justice, and to right the wrongs of being prescribed a harmful drug.

On redress, I recently submitted a written parliamentary question in the naive hope of getting a more positive response on compensation for the harm caused by sodium valproate. However, the Government’s answer stated again that they

“did not accept the recommendation to establish separate redress schemes for the three interventions in the report, including sodium valproate. Our primary focus is on improving future medicines and medical devices safety and it is therefore crucial that we focus Government funds on initiatives that directly improve future safety (including specialist mesh centres and support for families affected by medicines in pregnancy).”

As the right hon. Member for Elmet and Rothwell said, the mesh centres are not working anyway. In the final part of the answer to my written question, the Government said:

“For this reason, redress schemes will not be established in response to the recommendation in the report.”

Can the Minister honestly look these families in the eye and say, “Look, we’ve apologised. It’s time to move on and look forward. We’re not going to deal with you just now. We want to focus on future initiatives”? Can she not see how absurd that position is? Does she understand that all the people who gave their time to the Cumberlege review in the hope that justice would be served were effectively kicked in the teeth by the Government’s rejecting the recommendation for a redress scheme? Why undertake the review and not adhere to the key recommendations?

I am looking for an explanation from the Minister, but in an ideal world, we would see a U-turn. U-turns can be ridiculed in politics, but sometimes they are very welcome. This is certainly one U-turn that I, my constituents and everybody else who has suffered from such interventions would welcome.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I congratulate my right hon. Friend the Member for Elmet and Rothwell (Alec Shelbrooke) on securing this important debate on Baroness Cumberlege’s review. I was not present for the debate six months ago, so I cannot comment on many of the points that were raised then, but I am keen to update hon. and right hon. Members across the Chamber on the progress that has been made, because I am passionate about improving outcomes for the affected women. Not only do I have a huge amount of respect for Baroness Cumberlege, with whom I am working extremely closely on the results of her report, but she is a constituent of mine. I assure hon. and right hon. Members that she is holding my feet to the fire on all her recommendations.

The findings of the review laid bare the consequences of a healthcare system that has failed to listen and has disregarded the experiences of women. We have heard that movingly in many of today’s contributions, and in many debates in the House, on issues such as painful hysteroscopies, the delay in diagnosis for endometriosis or polycystic ovary syndrome, or women being ignored for years while experiencing symptoms of the menopause. There is a running theme.

My right hon. Friend the Member for Maidenhead (Mrs May) is exactly right that women often call for change on these issues for many years before their voices are heard. That is why I am pleased that we have England’s first ever women’s health strategy; we set out the vision document before Christmas and we will set out the full strategy very soon. It includes the appointment of a women’s health ambassador, who will look specifically at the issues and priorities in the strategy. We are recruiting at the moment and should have someone in post very soon. That is to make sure that women’s voices are not just heard but acted upon, so that in years to come we are not in a position where women and the MPs representing them are saying, “We have spoken every six months, but the situation hasn’t changed.” I reassure colleagues that I take all these points very seriously.

[Alan Brown]

It is good to hear the Minister’s commitment to listening to women’s voices. Will she listen to these women and, in particular, her constituent Baroness Cumberlege about the need to provide redress for the women who have been harmed by these drugs?

[Maria Caulfield]

I will come to that point. The Government have apologised on behalf of the health and care sector for the time it took to listen and respond. We are doing more than apologising: we are changing the healthcare system so that it responds to women in a much better way.

As the hon. Gentleman has just raised the issue of redress, I will touch on it now. It is not just these cases where it is often difficult for patients to get redress and compensation. I gave evidence to the Health and Social Care Committee this week on the issue of clinical negligence. This week, we announced a fixed recoverable costs scheme, meaning that, for low-value claims, we can speed up the claims process, reduce legal costs and ensure that, whatever clinical negligence they have experienced, patients are able to get compensation as quickly as possible. The findings of the Cumberlege report highlight mesh, Primodos and sodium valproate. However, across the board, it is very difficult for patients to get redress, regardless of the clinical negligence they have suffered.

--- Later in debate ---

[Maria Caulfield]

If I touch on the points in my response, hopefully I will be able to reassure colleagues on the progress being made.

[Alan Brown]

The point is that Baroness Cumberlege says the Government have an ethical duty to consider redress, so what does the Minister say to her constituents about that ethical duty that should be placed on the Government?

[Maria Caulfield]

I have addressed the points about redress, which is available. We are reforming the process of clinical negligence to make it easier for patients to get compensation without the need to go to court, and we are having some success in that. There is a very different system in place now compared with when many of these ladies were affected.

The patient safety commissioner was mentioned by some colleagues. The consultation proposed details for setting up the commissioner’s role. Baroness Cumberlege is on the recruitment panel for that position and will keep a close eye on the role of the commissioner. The advert and recruitment process is now up and running, and we expect to appoint someone very soon. I reassure colleagues that that appointment will be in place: the recruitment process has started, Baroness Cumberlege is on the panel to appoint the commissioner, and that commissioner will be independent—a point made by my right hon. Friend the Member for Maidenhead—of the Department of Health and Social Care, which will of course work closely with them. The commissioner will be able to scrutinise both the NHS and the Department itself.

On recommendation 5, about specialist mesh services, eight specialist centres are now operating in England, where women who have been affected by mesh implants can access treatment and mesh removal. A ninth is being set up in Bristol at the moment. I remain very open to colleagues’ experience of those mesh services. Women have the option to choose which centre they go to, but I recognise that that might involve great distances from where they live.

If women are not being referred to the centres, however, or if their experience of the centres is that their needs are not being met, I am keen to hear about that, because the whole point of setting the centres up was to ensure help for those women who have experienced mesh implants that have caused huge trauma—I take on board everyone’s points—to them, changing their lives and that of their families forever. If that is not working, the women’s health ambassador, the patient safety commissioner and I will look at that, because that was the whole point of setting up such services.

--- Later in debate ---

[Maria Caulfield]

I absolutely take that point—that is the crux of the matter. For too long in the health service, there was no duty of candour. The health service did not acknowledge when mistakes were made. That is changing; there is now a duty to declare when a mistake has happened. There is also support for staff. I cannot remember who mentioned the whistleblower on Primodos, but there is protection for whistleblowers now. There are freedom to speak up guardians to support whistleblowers in the workplace, and the Care Quality Commission is happy to take notification from patients and staff if there are worries about unsafe patient care. That will trigger an unannounced inspection to look at the data. It is all about creating a culture of learning in the NHS, rather than one of blame that pits patients against clinicians—that is what we want to change. That is how we learn from the mistakes of the past and prevent mistakes in the future.

[Alan Brown]

I thank the Minister for taking one more intervention. She talks about blame and not pitting patients against doctors or the NHS. Is that not the whole point of the redress agency that was recommended, to take away that adversarial approach?

[Maria Caulfield]

That is why we introduced NHS Resolution to facilitate a quicker method of getting compensation to those who have been harmed through clinical negligence. I encourage hon. Members to look at the work of NHS Resolution. We are doing more to ensure a better experience for patients, but we are fundamentally committed to ensuring that those who have been harmed get the support they need.