NHS Hysteroscopy Treatment

Baroness Keeley Excerpts

Tuesday 31st January 2023 Westminster Hall

[Ms Lyn Brown (West Ham) (Lab)]

I beg to move,

That this House has considered the matter of NHS hysteroscopy treatment.

It is an absolute pleasure to serve under your chairship, Sir Mark. I am particularly glad to be joined in this debate by hon. Friends and by the hon. Member for Thurrock (Jackie Doyle-Price). When she was responsible for women’s health, she took this issue seriously. We had a number of highly productive meetings about it, so it is welcome that we have the benefit of her ministerial experience in the debate.

This is the 10th time that I have spoken in this House about the completely unnecessary pain and trauma that women are subject to when they undergo hysteroscopies. Women who need pain relief are simply not being given it. They are being patronised, belittled and, frankly, betrayed. Effectively, they are bullied into accepting treatment so painful and damaging that they would never have agreed to it had they known what was coming.

I first spoke about how this issue needed to be resolved 10 years ago, at the behest of a constituent who came to my surgery to talk to me about her experience. Frankly, I am horrified that precious little seems to have changed since then. I will share a few of the recent stories that women have sent me since the last time I spoke about hysteroscopies in this place. I have had to choose very carefully: the number of women who have written to me is large, but my time this afternoon is short.

Julie had a hysteroscopy in July last year. She is 71 years old and wears hearing aids. Julie thought she was going in to see a gynaecologist and perhaps to have an ultrasound to investigate unexpected bleeding. She had been given no additional information, despite having waited for that emergency appointment for six long months. I can imagine how frightened she was. As expected, Julie’s appointment started with an ultrasound; unfortunately, the scan showed some thickening in the lining of her womb. Julie had removed her hearing aids to avoid losing them, which had happened before, so she could not clearly hear what was being suggested, but she was told that another procedure was necessary. A different nurse came in, and that was the very first time that Julie heard the word “hysteroscopy.”

Julie was, of course, a little confused about what was happening, because she could not hear properly, but she managed to make out that she might feel some mild cramping as the fluid and the scope were inserted. However, she describes the pain as utterly excruciating. The nurse tried to talk her through it and take her through breathing exercises, but they did no good—how could they? Julie was in a clammy sweat; she was worried that she would pass out. She was asked whether they could continue, and she was so worried about the ultrasound findings, and the last six months’ wait, that she said they could. A second attempt was made. Julie simply could not hold back her tears, or even breathe, through the terrible pain. Thankfully, the nurse asked again whether the procedure could stop, and Julie could say nothing but yes.

Afterwards, Julie was terribly woozy. She was wobbly, and scared that she would faint and fall. She was well cared for at that point—given pads for the bleeding and hot packs to help with the severe abdominal cramping. She lay in the recovery suite for about an hour, crying. Even after that, she was disassociated, trembling and struggling to walk. I remind hon. Members that she is 71 years old. She is truly lucky that she did not fall and break something.

Another woman who wrote to me was so overwhelmed by the pain of her hysteroscopy without pain relief that she fainted and fell from the full height of the operating bench to the floor. After that, she was left with not just serious bruises but lasting dizziness that has led to repeated falls and broken bones. It has physically affected her so badly that she has found it hard to stay in work for the very first time in her life.

In some ways, Julie was lucky, but the lasting impact on her was still significant. She vomited, and when she got home she continued to bleed for more than a week afterwards. She describes herself as stoic. She has had several surgeries before, and she lives with serious arthritis, so she is no stranger to pain. In her words, what she went through was “a brutal, torturous experience”.

The shameful truth is that at no point was Julie offered any form of pain relief at all. She only heard that a hysteroscopy was even a possibility while lying on the examination table with her legs up in stirrups. It is frankly a miracle that she was not so traumatised as to lose trust completely in the NHS, but she has since been back. She has had another hysteroscopy under general anaesthetic and found it an utterly different experience. All the procedures and risks were explained beforehand, and she had outstanding care throughout.

While Julie was in the waiting room for the second, successful hysteroscopy—this points to how commonplace this experience is—she met another woman whose experience was just like hers. The other patient was just as upset, but said she would not make a complaint because she felt she would just be ignored, and that would make her even more stressed. Sadly and understandably, most people who have had similar terrible experiences with the procedure are like the woman Julie met. We never hear their stories.

Let me offer some more testimonies to give voice to those whose pain and distress were completely ignored. Martha was seriously injured during her hysteroscopy last August. She went in for a check-up after she had bleeding for several days after starting hormone replacement therapy. Her GP referred her for the hysteroscopy, but although he explained some of what the procedure would involve, he was, in Martha’s words, “blasé”. He showed absolutely no understanding that Martha’s medical history and conditions made extreme pain and damage much more likely. When the procedure began, Martha described the pain as “excruciating”—exactly the same word that Julie used.

Martha screamed out, “No, no, stop,” repeatedly, yet when the doctor looked at her, he looked very unimpressed. He asked her whether she would rather he stopped so she could come back and have it under general anaesthetic. She said yes, but instead of listening, he insisted that he have more time—just 30 seconds. He went in again with a smaller scope, but again it caused searing pain.

After the procedure, Martha understandably felt violated, but sadly that was far from the end of her ordeal. She had burning pain for weeks, mixed with a loss of feeling in her groin. She developed repeated bladder infections and double incontinence, and her muscles started wasting. She had difficulty standing and walking. Eventually, Martha was told that she had post-operative nerve damage. To put the cherry on the cake, I understand that the doctor who did this to Martha recorded her pain score as just one out of 10. To me, this sounds very much like fraud—on top of sheer callousness, absolute incompetence and indifference.

Martha describes herself as a fiercely independent woman who does not suffer fools, but she told me she had the overwhelming feeling she had been duped and made a fool of. She says she has always trusted professionals, but never, ever again. She is reeling because the NHS that she supported for decades

“managed to injure me and cripple my life, take my self-respect and my confidence in under 15 minutes.”

Martha tells me—I think she might be right—that the next great women’s health scandal after mesh implants will be this.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I am really appalled, and I want to raise a point with my hon. Friend. The situation Martha found herself in is happening up and down the country. A constituent who was due to have a hysteroscopy examination at our local hospital in Salford was told the same thing as in the stories my hon. Friend is telling: “Local anaesthesia can be given if necessary” and “Take paracetamol one hour before.” However, this constituent had a family member who had had a hysteroscopy in a private hospital and was offered a general anaesthetic because the procedure was “too painful” to be performed in any other way. So the NHS patient in a private hospital is offered a general anaesthetic, but the one in an NHS hospital is not. When I wrote to the hospital on my constituent’s behalf, I was told:

“a general anaesthetic can be requested, though the medical team advise against it.”

There is a key question that I want to put to my hon. Friend. It is all right to say that the procedure can be stopped or carried out later, but does she believe that the information given to patients is wrong and that that is not acceptable care?

[Sir Mark Hendrick (in the Chair)]

Order. Can I ask that, when hon. Members intervene, they make it short?

--- Later in debate ---

[Jackie Doyle-Price (Thurrock) (Con)]

It is a pleasure to serve under your chairmanship, Sir Mark. I wish I could say it was a pleasure to follow the hon. Member for West Ham (Ms Brown). I have genuinely enjoyed working with her on this subject for quite some years. But it is not a joy to follow her in this debate, because it is frustrating that we are still having the same discussion. It feels like groundhog day; it has been four years since I ceased to be the Minister responsible for this issue.

The hon. Member for West Ham reminds me that I started the moves towards the women’s health strategy, and established the women’s health taskforce, exactly because of the stories that she tells. It was very clear to me, when I started to look at this subject, that ultimately all the female Members of Parliament who are present have had terrible experiences at the hands of the NHS. We are very good at looking out for ourselves. If that has happened to us, then it is something that is being repeated for women up and down the land. It is something that we must address properly.

At the heart of what the hon. Member for West Ham is talking about is the principle of informed consent. Informed consent is the underpinning principle of our NHS. The stories that the hon. Member has outlined this afternoon show negligence around consent. They show women being referred for what is an investigatory procedure, not a treatment, without any proper consideration as to what they need to understand before consenting to such a procedure. The truth of the matter is that women find themselves undergoing a procedure in terrible pain before they even know what is happening to them. In 21st-century Britain, that is not acceptable.

We have made a lot of progress on centring women when we look at health, and ceasing to treat them as walking incubators for babies. We are human beings and we need to have our needs properly considered when we consent to treatment. We now have a women’s health strategy, which shows we have made some progress.

However, the hysteroscopy procedure has not received the attention that it deserves. Although two thirds of women who have the procedure go through it with less pain than in the cases we have heard today, a third of women experience terrible pain. That this is not properly explained to them is appalling. I have heard cases where women are just told to take some paracetamol before they go in and there will be no problem. For those women who do experience pain, as the hon. Member for West Ham has outlined, it is very severe. We must ensure that we have proper, well-understood protocols that govern how this procedure is managed, and how women are engaged in it.

The hon. Member for West Ham draws a parallel with mesh implants, and I think that is absolutely right. Again, the issue of informed consent was missing in many of those cases. We found that the mesh treatment was being routinely recommended to women after childbirth, women were not having any risks explained to them, and then, low and behold, they were suffering debilitating problems for the rest of their lives. As we roll forward with the women’s health strategy, we must stress-test exactly how much information we are giving to women, so that we can make informed consent an absolute reality.

The truth is, our wombs are not just here to incubate babies; they are part of us. The women here will have all had to go through invasive examinations internally. They are not very nice experiences. I do not know about anyone else, but when I have to do that I have an out-of-body experience where I zone out of what is happening to me. These women cannot do that, because they are suddenly visited with terrible pain. They cannot zone out of the fact that somebody is fishing around between their legs; they are living that, and that is an absolute trauma—a trauma that will stay with them for the rest of their life, notwithstanding the other side effects that they experience.

The women’s health strategy has alluded to some of those aspects, but I do not think it has taken up the issue with sufficient seriousness. It talks about the need for conversations about pain relief before a hysteroscopy procedure, but it needs to be a lot more than that: people need to be given sufficient information to enable them to decide whether or not they even want that examination. As many as 10% of women suffer with problem periods, fibroids and the kinds of conditions that would lend to them having such an investigation, but we need to be able to make that informed choice—“Is it really going to make a difference?” Frankly, if you are 71 years old, what difference is it going to make? All it is going to do is establish the cause of the bleeding. You might be better off managing that condition, because if there is going to be no end of treatment following the hysteroscopy, the whole thing is absolutely pointless, with a substantial degree of risk.

I am pleased to hear that the Royal College of Obstetricians and Gynaecologists is updating its best practice guidelines. I ask the Minister to consider inviting the women’s health ambassador, Lesley Regan, to carry out a proper stress test of everything around this issue. I had the pleasure of working with Lesley when I invited her to co-chair the National Women’s Health Task Force: she brings considerable expertise, including as a gynaecologist who is a woman. The truth is that far too many gynaecologists are male, and with the best will in the world, I do not think they are ever going to understand, let alone care about, the degree of pain that is being administered to their patients. I am really pleased with that appointment: Lesley is a fantastic advocate for women’s health, but I would like her to look at this issue properly so that we have a good set of ideas, advice and principles to help women make informed choices, and to make the medical profession understand exactly what difficulty this procedure involves for some women.

I invite the Minister to put that advice alongside some advice about healthy periods generally. Women need to be encouraged to take ownership of their gynaecological and menstrual health, but again, they can only do that with sufficient information. We will not avoid situations where women rock up to hospital for an appointment and, the next thing they know, find themselves on the trolley in stirrups without properly understanding what is happening to them unless everyone understands what good menstrual health looks like; what the alert factors are for some of the conditions that might invite a hysteroscopy examination; and what potential treatment might follow.

The hon. Member for West Ham has outlined the painful experiences that some people have had, but we all need to understand exactly what is involved in a hysteroscopy. It is an internal examination of the womb, which is undertaken by the insertion of a camera through the cervix. We know from the evidence that the hon. Lady and I have examined that women who have not had children are particularly affected by pain. If we think about what that procedure involves, it seems like a no-brainer that women who have not had children would suffer more pain, so again, I cannot get my head round the negligence with which women are referred for this procedure without proper consideration of the pain involved.

[Barbara Keeley]

I want to emphasise this aspect of the issue, based on what I was told by my constituent: the leaflet did not mention that the procedure can be stopped if the patient is unable to tolerate it. Can the hon. Lady think of another medical procedure that is run without anaesthetic on that basis—that it can be stopped if the patient cannot tolerate the pain? There are not many other examples.

[Jackie Doyle-Price]

No, and the interesting thing is that, in theory, a patient should be able to stop anything. That is what informed consent should be about. Again, it illustrates the relationship that we have with our health service. We naturally defer to medical professionals. We assume that they know better than us, and perhaps that is where we need to alter our relationship. These are human beings; they are not gods.

We need to be empowered to take more agency and ownership of how we approach these things. Listen to the description by the hon. Member for West Ham of Julie removing her hearing aids: there is no way that she was in control of that situation. How can a patient make informed consent and have the ability to stop something that is causing them significant distress and trauma in those circumstances? As I mentioned, it is extremely painful, especially for those women who have not had children.

We know that some women are just told to take paracetamol before they arrive, and there is a massive discrepancy from organisation to organisation when women try to exercise their ability to choose whether they have a general anaesthetic. In some cases, women are told that that is not really the best thing for them; in others, as we have heard, that elective choice was made quite easily. To me, that brings a real worry that too many in our medical establishment are not giving their patients the respect that they deserve. That is something that we really need to change in the culture of our NHS. It is all about behaviours, ultimately; we need to look at how we can encourage better behaviours towards patients throughout the system.

In the short time that I have left, I will make some specific asks of the Minister. I have mentioned that I would like her to invite Lesley Regan to properly stress-test this, but we need a proper risk assessment tool for each woman undertaking the procedure, so that both they and the medical professionals they are dealing with can make an informed choice on whether they are more or less likely to suffer the substantial pain that has been outlined in the debate. I also invite the Minister to consider the work of Baroness Cumberlege in “First Do No Harm”. One of the themes running through that work—and again, I mentioned mesh earlier—was the absence of informed consent. One of the conclusions we drew was that we need a proper patient’s voice to be able to stress-test those incidents where there is widespread poor practice in the NHS.

Ultimately, the NHS is a producer-driven system. We have care pathways that are very much process driven and not practitioner or patient driven, frankly. We must help practitioners to help themselves by empowering patients, because they need to have that mutual understanding on the same level. I invite the Minister to consider properly the establishment of a patient commissioner so that we have somewhere to refer these incidents of widespread poor practice.

We have outlined today the serious harm being done to women put through the procedure without appropriate care. That is doing real harm, and if we are going to have an NHS that works for all patients, we need to address incidents such as this extremely quickly.