Cumberlege Report

Debate between Mike Penning and Alec Shelbrooke

Thursday 3rd February 2022 Westminster Hall

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

I beg to move,

That this House has considered the Cumberlege Report.

It is a pleasure to serve under your chairmanship, Mr Rosindell. I have secured a debate about fulfilling the recommendations of the Cumberlege report because I do not feel that we are making enough progress. We had a debate on the Floor of the House in July and a written ministerial statement on 21 July. To stay in order, Mr Rosindell, I will only say that the Minister’s answer to the debate and the written ministerial statement were disappointing, in many ways. In my opening remarks, I will seek to address why I believe that to be the case and, fundamentally, ask for certain updates. We are talking about people whose lives have been destroyed. Many hon. and right hon. Members will bring their own examples about various parts of the report, whether they are about Primodos, sodium valproate or mesh, but I will focus my comments on mesh.

I will not spend too much time going over the examples I gave during the debate in July, which can be looked up in Hansard, but I will say that people were given an operation that many did not need, which many were convinced that they should have. Some people did not even know it had happened to them. It took many years for the problems that arose to become apparent, and so those people have effectively been dismissed.

Like many Members, I have constituents who have had their lives stopped, especially women, although I will mention how the issue affects men as well. One constituent, who I have mentioned before, was a physiotherapist in her 40s who had had a child. She had mild incontinence after giving birth and was told to have the mesh implant, which she went ahead and did. Her entire life has been destroyed by that. Trying to remove it was described to her as being like “trying to take hair out of chewing gum”. We should consider that image when we think about the difficulty of the operation. We must not forget that the NHS did this, and the NHS has a responsibility to deal with it. I will make that point several times.

I have been contacted by a lady who is a constituent of my hon. Friend the Member for Thornbury and Yate (Luke Hall). Her name is Paula Goss and both she and he have given me permission to talk about her case. She set up Rectopexy Mesh Victims and Support in March 2019 after she was unable to find much research or information about the meshes that she had had put in. The group now has over 1,100 members, as well as members who have sacrocolpopexy vaginal mesh and hernia mesh. She is the ambassador and advocate for rectopexy and hernia mesh on the Mesh UK Charitable Trust, which has a further 2,000 members.

She had rectopexy mesh in 2014 as she was unable to clear her bowels. She was ill-informed by the now dismissed surgeon, who, as she found out from her notes, inserted three meshes—in the bowel, vagina and posterior. She says:

“All mesh types don’t necessarily show complications straightaway. My Pre mesh insertion issues started again around 9 months after the op, in which I was passed from pillar to post by all medical professionals saying my issues were the menopause or in my head. This went on from 2015 until September 2018 when I was admitted to hospital with a blocked bowel and bladder and had to have enemas and catheters, still they would not connect this to the mesh, upon doing a CT scan at this time they also found a large ovarian tumour, it was then discussed by my gynae oncologist at the BRI and Southmead NBT to do a joint op to remove the tumour and the mesh, due to the incompetence and lack of mesh removal experience at Southmead I ended up having the ovarian tumour removal in January 2019. Thankfully, after testing it was a large benign fibroma, following up with Southmead they then stated that they wouldn’t remove my mesh but would do an op to give me a permanent stoma—again, brushed aside and fobbed off, I sought a second opinion in London privately, whilst we are by no means rich, you can’t put a price on your health...I had to pay £32,000 for my removal, it took over 10 hours and they could not get all of it…two protacks in particular sit very close to the bifurcation of the inferior vena cava on the left and the common iliac on the right. Pre mesh removal I was found to have a heart murmur and I suffered pericarditis quite a few times. My histology on my meshes showed that I was not a candidate for polypropylene and should not have this inserted again…When I discovered I had hernias again I was neglected by the local hospital who at first refused to do a scan, saying I must have an ulcer. it was thanks to my private mesh removal surgeon who contacted my GP and insisted that I was referred for a CT which then clearly showed two large incisional hernias.

The consultant at Southmead stated he would only fix my hernias with polypropylene mesh. After I told him that I couldn’t have that, there was no option but to again look down the private route. Thankfully, my colorectal mesh removal surgeon was able to do this and a date was set for 6 January 2020. However, my hernia started to strangulate and I was luckily rushed to London by my husband, and had this op done on 28 November 2019. This cost £43,000.

This operation was by far the toughest and took a long time to get over, due to ending up with a seroma and now a hiatus hernia due to the trauma to my abdomen.

My journey has not been, and is still not, plain sailing, but I am one of thousands.

Whilst vaginal mesh gets a lot of coverage, ours does not. Rectopexy affects men, women and children…All three main types of mesh need to be included and talked about—bowel mesh, vaginal mesh…sacrocolpopexy and colporrhaphy vaginal mesh and hernia mesh...One of our rectopexy mesh ladies found out that the surgeon who put mesh in also removed her ovary without consent, she sadly committed suicide due to this event.

One of our rectopexy patients was just 15 when she had her mesh inserted. She’s early 20s now and now suffers complications and doesn’t even know if she will ever be able to have children.

We have other ladies in their 20s and early 30s suffering, who may not be able to have children.

We have many rectopexy bowel men on our sites who feel they have nowhere to go and no one who will listen to them.

This is the same for all hernia mesh victims too.

There are many real victims’ journeys that need to be listened to and taken seriously.”

That is what the report did, and why it was so appreciated by the victims, as they were finally being taken seriously. That is where the report’s value lies. Today, I once again push for it to be implemented in full as far as possible, and for recommendation 3 about redress, recommendation 4 and recommendation 5 to be reconsidered.

Recommendation 1 was for an apology. That apology was received in July 2020, given by the Government, but, as good as it was, their actions depend on whether they can justify what they are doing on recommendation 9. Recommendation 2 is:

“The appointment of a Patient Safety Commissioner who would be an independent public leader with a statutory responsibility. The Commissioner would champion the value of listening to patients and promoting users’ perspectives in seeking improvements to patient safety around the use of medicines and medical devices.”

The Government accept recommendation 2, and I ask the Minister for the latest update on that appointment. On 2 December last year, in the other place, the noble Baroness Cumberlege asked Her Majesty’s Government

“when the process to appoint the Patient Safety Commissioner will commence; and when they expect the Commissioner to be in post.”

In response, the noble Baroness Chisholm of Owlpen said:

“My Lords, we are making good progress towards appointing the first patient safety commissioner for England. We expect the appointment of the postholder by spring 2022.”—[Official Report, House of Lords, 2 December 2021; Vol. 816, c. 1443.]

As I said, I would like an update on where we are in that process.

Recommendation 3 is that:

“A new independent Redress Agency for those harmed by medicines and medical devices should be created 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.”

The Government do not accept recommendation 3. As set out in the Government’s statement,

“We have no current plans for a redress agency…We do not believe it is necessary to create a new agency for redress as it is already possible for the Government and others to provide redress for specific issues where that is considered necessary. Neither do we believe that creating an agency would succeed in making products safer as the report suggests, or that grouping existing redress schemes through a single front door would add value for harmed patients.”—[Official Report, 21 July 2021; Vol. 699, c. 72WS.]

I do not accept that it is already possible to provide redress where necessary, because my inbox, and I am sure those of several right hon. and hon. Members, suggests that that is simply not true. It is too vague and takes too long. When I talk about recommendation five, I will discuss where that issue comes to a head.

I come back to my point, which is that the NHS did this to people. I have said it before and I say it again: the problem is very similar to the thalidomide scandal. Eventually we got justice for thalidomide victims. People are just being fobbed off—I have many examples—and that is exactly what happened with thalidomide. Mr Rosindell, can you imagine living an active life, as we all do, and the NHS recommending something that means that you can no longer take part in what you were doing? Imagine being physically and mentally restricted and unable to fulfil your life’s ambitions. A full quango might not need to be set up, but at the very least we need a ring-fenced department in the NHS to bring those areas together.

[Sir Mike Penning (Hemel Hempstead) (Con)]

Baroness Cumberlege specifically states in her report that her terms of reference prevented her from talking about individual compensation and redress. Is my right hon. Friend suspicious, like me and probably many others, that that was specifically written into the plan so that she could not do what my right hon. Friend is asking for?

[Alec Shelbrooke]

That is where we have to dig into recommendation 4:

“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”.

The Government do not accept recommendation 4. That is exactly the same situation as with thalidomide. One of my earliest campaigns in 2012 was to extend the grant to victims, and my hon. Friend the Member for North Dorset (Simon Hoare) took that campaign further to make it a permanent grant. People will not recover from what happened, whether it was drug-induced or operation-induced.

My constituent who has had mesh removed emailed me only today to say that four years down the line things are better, but they have not improved to the point where she can really live her life. She says she is mentally exhausted and does not want to go on. She had a thriving physiotherapy career that she cannot go back to. She is only in her 40s and has the rest of her life to live. The Government have a responsibility because the Government run the NHS. I interchange the words “NHS” and “Government”, but the NHS is the Government. That is where this situation falls on the Minister:

“While the Government are sympathetic to the experiences of those patients who gave evidence to the report, our priority is to improve the future safety of medicines and medical devices.”—[Official Report, 21 July 2021; Vol. 699, c. 72WS.]

Trying to prevent further catastrophe is obviously very important—that is one thing—but thousands of people will suffer for the rest of their lives thanks to this treatment.

I will draw the distinction between this surgery and breast-enhancement surgery. Many people have had that done privately and then when there have been complications, they have had the operation to sort it out on the NHS. There is often a lot of debate around whether that is right or wrong. That is not where I want to go today. However, if we are willing to do that for things that people have had done privately, why are we not willing to redress the issues of people who have had things done by the NHS?

We are talking about women from their teens all the way up. Some people think the problem is with the elderly end of the population, but we are talking about those in their teens upwards. As I said, we did recognise the situation with thalidomide. I know that costs come into it, but there is a moral responsibility to redress the situation.