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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?
Ms Brown
I agree with my hon. Friend that there is a massive lack of information. I am sure there is a difference between private and public health in this area, but a friend of mine went to a London hospital and asked whether she could be given a general anaesthetic. The answer she got was, “Of course. Do you think we’re barbarians?” There is different practice in different NHS hospitals, and a different understanding of the kinds of issues we face.
I think we all know the upshot of these kinds of experiences: women will end up too afraid to get procedures that they need to have. It will impact on their long-term health prognosis. It will cost the NHS more in the future, as it has to play catch-up on diagnosis. As we know, hysteroscopies are really important. They can be used to rule in or out cancer and a host of other important conditions, so women have to be confident about having them. They need to have them, and they need to know that they will not experience what Julie, Martha and so many more women have experienced.
The survey being run by the Campaign Against Painful Hysteroscopy has had over 3,000 responses and counting. Despite that, and despite all the individual stories I receive and raise in Parliament, we simply do not know how widespread the problem is. I am afraid that the reason might be that the NHS really does not want to know, because knowing would strengthen our calls for change and for all women to be treated with respect, to have their pain taken seriously and to be given accurate information and genuine choice. For that to happen, I believe that the Minister has to engage with this issue personally and dig a bit deeper to ensure that accurate and appropriate data is being collected and analysed. We also need independent oversight. I beg the Minister not to be content when, inevitably, the medical profession says, “It’s fine” and “Action is being taken,” because, frankly, it has been 10 years, and we have heard it all before.
I am sure the Minister will remind us about some of the campaign successes, such as scrapping the best practice tariff, which until very recently financially rewarded NHS trusts for doing hysteroscopies in out-patient environments, where proper anaesthetic is not possible. Sadly, that drive for more cheap, quick hysteroscopies, regardless of the risk to women’s health and wellbeing, is still going strong. The target of 90% of hysteroscopies to happen within out-patient rooms has emerged again in a new NHS programme, which, ironically, is entitled “Getting It Right First Time”. I can tell the Minister that if women continue to be pushed into hysteroscopies without proper care, the NHS will not be getting it right first time at all. Instead, more women will endure pain for no reason at all during unsuccessful procedures, and they will then have to repeat those procedures under general anaesthetic.
It appears that the target of 90% is the brainchild and objective of the British Association of Day Surgery—well, I am sure there is no vested interest there. It is frankly alarming that we have a clinical lobby group advocating, effectively, against women having a genuine choice over the pain relief they need when they have a hysteroscopy. What is worse is that I understand that some private companies are promoting their no-anaesthetic out-patient procedures within the NHS by bragging that hospitals can save up to £1,000 per patient. You could not make it up. Clearly, there are some very influential people who do not want this campaign to succeed and who prioritise saving money—or making money—over women’s safety from pain and trauma.
I know how busy the Minister is, but we ain’t going to be successful in our campaign for pain-free hysteroscopies without Government leadership. I was pleased to hear last night that the Minister’s office has contacted the campaign group offering times for a meeting. That is good news. I strongly agree with some of the Minister’s words in response to one of the anonymous women whose cases I have raised today. Let me quote the Minister:
“It is clearly important that women are offered, from the outset and as part of the consent process, the choice of having the procedure performed…under general…anaesthetic.”
I ask the Minister to emphasise that point today, because women cannot give truly informed consent unless they have had a full discussion—including a discussion of their individual risk factors and a choice of anaesthetic—from the very start. In my view, that means that Julie, Martha and so many others have had a surgical procedure performed on them without consent. I am sure we would all agree that that is very serious indeed. When the Minister responds, I hope she will commit to treating this issue as a high priority for women’s health. We do not want women to be bullied when they go into the NHS for treatment.
We are eagerly awaiting the publication of the good practice paper from the Royal College of Obstetricians and Gynaecologists, and other new guidance—I had hoped to have it yesterday in order to inform this debate. I understand that the draft paper recognises that fully one third of women report pain scores of between seven and 10 out of 10. That clearly shows that we need a massive change. The need for real choice cannot just be in guidance; it also needs to be enforced.
Based on the recent stories of women that I have told today, in many cases we are seeing brutality instead of best practice. Women are being violated and betrayed. Their trust in the NHS and medical professions is completely undermined. Surely that cannot be a legacy that the Minister, or the Government, want to leave behind.
Sir Mark Hendrick (in the Chair)
Thank you. I remind Members to bob if they wish to speak.
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.
Jim Shannon (Strangford) (DUP)
I am grateful, Sir Mark, for the opportunity to speak in the debate. I thank the hon. Member for West Ham (Ms Brown) for raising the issue and, as she so often does, setting the scene so well. She has had a number of debates on this—some of them were Adjournment debates in the Chamber—and on every occasion I have been there to support her. I will come on to explain why I support her and what she is trying to achieve. I thank the hon. Lady for her contribution, and I look forward to the contribution of the hon. Member for York Central (Rachael Maskell); I thought I was going to follow her, but today it is the other way round. I very much look forward to the contributions.
Over the years, the hon. Member for West Ham has done her bit to secure debates on raising awareness of issues surrounding hysteroscopy treatment. As my party’s spokesperson on health, it is always a pleasure to be here to support her and her requests. The hon. Lady pushes these requests with perseverance and dedication, and I recognise that in supporting her. We look to the Minister for a positive response to what she is asking for. She has always made her requests in a way that is direct but never nasty, and with determination, which I support.
Many women have contacted my office about issues relating to this procedure that have been going on for years. It is great to be here to add my support to the requests of the hon. Lady and others. I have spoken in these debates before, and I am always shocked at how common these issues are. There have been countless reports on issues such as anaesthesia and pain relief, to the extent that all Health Departments across the devolved Assemblies have taken formal action.
I always try to give a Northern Ireland perspective to these debates. Back home, the then Minister of Health Robin Swann provided an overview of guidance currently followed in Northern Ireland for hysteroscopy procedures, referring to information provided by the National Institute for Health and Care Excellence and the professional guidance produced by the Royal College of Obstetricians and Gynaecologists. He stated that there was a need to
“write to the HSC trusts in Northern Ireland to highlight this guidance and remind the service about the importance of the consistent application of the guidance.”
The Cumberlege report plays a role in this area too, and the hon. Member for Thurrock (Jackie Doyle-Price) referred to it. The purpose of the report was to make recommendations for improving the healthcare system’s ability to respond to the issues that women have been having with hysteroscopies. The hon. Member for West Ham set the scene well and with thoughtful consideration with regard to the guidance. According to the Campaign Against Painful Hysteroscopy, at least 70—or 35%—of women who have had hysteroscopies this year in English NHS hospitals said they were left in extreme pain following their procedures, with many suffering trauma for several days.
The reason I am here is simple. My wife went through one, and the hon. Member for West Ham knows that. I am here to support my wife, first of all, but also to highlight from a male point of view why I think this is so important and why the hon. Lady is right in what she asks for. Before my wife and I got married, my wife had had some problems, and the doctor—who was lovely, by the way—said to my wife, “You know, Sandra, when you get married and have children, things will be okay.” Well, they were not okay. The years went by and after three children things became worse. I believe it is important that I stand here in support of my wife and other women across the United Kingdom of Great Britain and Northern Ireland.
In a world of many technological advances, we can do more to ensure that pain relief is available and pain is kept to a minimum. The hon. Member for West Ham illustrated that well in the example that she gave. No one could have any doubt whatsoever as to exactly what was happening and why that 71-year-old lady had to endure what she endured. The Royal College of Obstetricians and Gynaecologists has been in touch with my office ahead of this debate. I am always thankful for its input, as I believe it gives a real insight into the problems that are occurring and backs up evidentially what others have said. It has raised a valid point that is often left out of the argument—that the fear of pain puts women off these procedures completely. I believe it probably does. From looking at the evidence and hearing the stories, my goodness me, would someone not be scared? That is it.
Hysteroscopies are used to detect and diagnose a range of conditions and symptoms, such as pelvic pain, repeated miscarriages—which are a reality as well—excessive bleeding, fibroids and polyps or cancerous growths in the womb. It has to be underlined that hysteroscopies are a possible life-saving tool. Unfortunately, the risk of pain puts many women and girls off, which increases the likelihood of problems in later life. The best thing we can do is get the conversation going. The hon. Lady has done that consistently over the years. I want to continue that conversation, so we can ensure that sustainable pain relief is readily available. I hope today we get a positive response from the Minister.
I want to conclude by thanking the hon. Member for West Ham—I mean this genuinely—for her valiant efforts in raising this issue. She has raised awareness of consent, choice and effective communication in this matter, and it is clear that existing provision falls down on all three. It has to get better, as the backbone of many procedures and especially those more intimate procedures where younger women may feel scared and even unsupported. For the mainland and the devolved Administrations, there is more to be done in safeguarding and implementing efficient practice for hysteroscopies and other intimate treatments for women.
I look forward to what the Minister will say in response to the debate. I know that she understands these matters very well and I think the response will be helpful. Again, we look forward to improvement, which is what we ask for. We need to see that process starting today in Westminster Hall.
Rachael Maskell (York Central) (Lab/Co-op)
It is a pleasure to serve under your chairmanship, Sir Mark. I thank all hon. Members for their powerful contributions.
Jan was not one to make a fuss and had never written to her MP before. The fact that she felt impelled to do so is testament to how awful her hysteroscopy was; it motivated her to do everything in her power to prevent other women from suffering the same trauma, despite facing the prospect of terminal cancer herself. Jan sadly died two years ago this week. Her husband came to my surgery last autumn and asked me to take up this work, informing me of the work my hon. Friend the Member for West Ham (Ms Brown) was pursuing. Knowing her as I do, I know that she will do everything possible to speak up for women and ensure they are heard.
It was 16 November 2020. My constituent was terrified. She had discussed the process with her medical friend, who advised her to tell clinicians on arrival. She did, but was met with derision and disdain. The official guidance says:
“If you feel anxious about the procedure, you should talk to your healthcare professional before your appointment.”
She wished she had not. My constituent was there for an examination of a possible cancer of the uterus. She was naturally very concerned. She did not want to have to delay a diagnosis for the sake of waiting for a general anaesthetic. She was not informed that she could have a general anaesthetic; it was just her own research that took her to that place. She was told that it could be another two to four-week wait. As we later found out, that would have been a significant period of the rest of her life.
Jan went ahead but nothing prepared her for the pain she was about to experience. She had had no pain like it. Even having given birth vaginally three times with little or no pain relief, she could not comprehend the pain that she was about to experience. The clinician did not stop and did not seek to know her pain level until she was in so much pain that she could not speak. She was trying not to pass out; she was trying to stay conscious. When she was asked, she could not respond. I must say that when I heard the story from her husband, I sat there thinking, “This is assault.” There was no informed consent.
As we know, a third of women experience significant pain in this procedure, although research is poor. Options are not clearly communicated to women and women’s voices are simply not heard. If a third of women are experiencing significant pain, that means the majority are experiencing some level of pain. It is beyond my comprehension why women have to experience pain at all. As we have seen in the “First Do No Harm” report, which many have raised today, the voices of women in healthcare are simply not being heard. We can all reflect on our own experiences of being dismissed—that it is nothing and there are clearly other more important things to deal with. It is simply not good enough. A woman’s voice is disappearing in our health service; it needs to come to the fore and today’s debate will do that.
That was not the end of the story. We sought a review of the case and the department lead carried one out. The review said that there was consultation and listening, but that was a very different story from Jan’s experience. Ultimately, the outcome did not change the situation, but women will be going through that process every day, and we therefore have to change the situation all together.
We have a women’s health strategy. We need to ensure that the woman’s voice is heard in our NHS, because Jan’s was not. Constant verbal feedback is so important when going through any procedure. A clinician should be constantly looking, watching, seeing and understanding their patient. That clearly did not occur. Of course, the clinician should have stopped, but they never should have started. It never should have got to that point.
The way in which patients are counselled for this process needs to be completely re-examined. Having a general anaesthetic should not just be posed as an option, but perhaps be suggested as the most pain-free way of having the procedure. There are other things available, for instance a local or regional anaesthetic, or—if a woman dares or is ill-advised—just an analgesic, but we should focus on ensuring that this is a pain-free procedure for women. But that is not what is advised; that is not the target. It is a target that is driving this experience as well, and it must be removed all together.
Like many areas of women’s health, this is a massively under-researched area of medicine. Can the Minister commission research into hysteroscopies, particularly in post-menopausal women? A doctor came to see me to talk about how the cervix changes as people get older. It can cause tightening, meaning the procedure is even more difficult for older women. Therefore, carrying out proper research to understand the changes within the body would seem completely appropriate before the procedure continues, particularly for older women.
In conclusion, we have talked about the need for women to be heard in the health service, but we need to gather that. I hear about the work that is being undertaken, but as we were saying in response to the “First Do No Harm” report, there should be proper logging of who has been through this procedure. We should seek out that voice, because we may see a different reflection of what has happened. In Jan’s words, the experience left her “deceived, patronised and betrayed”. That is simply not good enough for our NHS.
Feryal Clark (Enfield North) (Lab)
It is a pleasure to serve under your chairmanship, Sir Mark. I thank my hon. Friend the Member for West Ham (Ms Brown) for securing this debate, and for her tireless campaign on the matter. It has been 10 years with almost 10 debates, and she is still going. Numerous Ministers have committed to making this a priority. As we have heard, there have been some improvements, but nowhere near enough to make a difference to the lives of women. I praise the incredible contributions from the hon. Members for Thurrock (Jackie Doyle-Price) and for Strangford (Jim Shannon), and my hon. Friend the Member for York Central (Rachael Maskell).
As we have heard, a hysteroscopy is a procedure used to examine the inside of the uterus. It involves dilation of the cervix, sending fluid into the uterus to expand it so clinicians can examine the uterus and the fallopian tubes, and the use of surgical instruments to examine the inside of a woman. It is an essential tool for diagnosis and treatment of many conditions affecting women, including unusual bleeding, pelvic pain, recurrent miscarriages, difficulty getting pregnant and many more. When I had my hysteroscopy, I had had several miscarriages and I was desperate for a baby. When I was offered this procedure for further investigation, I read every side of the leaflet and looked into it. Not only did I take paracetamol; I took ibuprofen, to ensure that I did not have the “little discomfort”.
I turned up and there was a lovely nurse, who was very softly spoken. A nurse stands next to the patient to talk them through it, and holds the patient’s hand. If it is a “slight discomfort”, the whole process of having someone standing there trying to be a guide through it, is worrying. It is the most excruciating thing anyone can go through. It may have been a 10 on the scale. I do not understand how even slightly lower than that could be acceptable for any human being.
I was asked things and the nurse kept talking to me, but I could not respond. I was in so much pain. Because I was so desperate for that baby, I would have walked over broken glass with bare feet. I did think about continuing through the pain, but luckily I passed out and the procedure ended. It is not acceptable in this day and age that women have to go through that level of pain for healthcare.
Jackie Doyle-Price
I thank the hon. Member for sharing a very personal story. She lands an important point. When women are desperate to fulfil the urge to give birth to a child—a deeply biological impulse—they will go through anything, as she rightly says. Does that not tell us that the degree of pain we are aware of could just be the surface?
Feryal Clark
I wholeheartedly agree with the hon. Member. It develops a level of acceptance, which is not right or acceptable. Hysteroscopies are paramount to women’s health, but we have heard horrific accounts from my hon. Friend the Member for West Ham of women’s experiences of having the procedure. That should never have happened to women, and those women affected are right in their fight for justice. There is a lack of information or no information about the choice of pain relief available before, during or after the procedure. Paracetamol is not enough. There is an assumption that the patient will experience only discomfort—in my case, it was slightly more than that—despite some women experiencing intolerable pain. If they do experience that so-called discomfort, the assumption is that it does not matter because it is only short lived.
It is astonishing that the NHS still does not collect data on the number of women who experience severe pain during hysteroscopy. However, the Campaign Against Painful Hysteroscopy, which does undertake surveys of women, has found that more than 90% of women surveyed were traumatised for a day or longer by the pain. Three quarters said they were not aware of pain management options before the procedure was carried out. In 2020, half of NHS hospital trusts in England failed to warn patients that they could suffer pain. Women are simply not given the information they need to make informed decisions, which must include information on potential pain, options for pain management and alternative procedures. Let us be clear: a woman should not have to experience excruciating levels of pain to access essential healthcare.
As we have heard, the national tariff creates an incentive for hysteroscopies to be carried out as an out-patient. We cannot deny the obvious advantages of out-patient care. For example, it allowed women to access hysteroscopies more easily during covid, and can reduce the time women have to wait for diagnosis and treatment, but it does not allow for patient choice and patient voice. Some 61 out of 131 NHS trusts admitted to the Campaign Against Painful Hysteroscopy that they did not warn patients about the risk of severe pain, and this could lead to unnecessary pain for women. Informed consent, choice and effective communication is not the norm when it comes to women’s health; it is barely there. That cannot and must not continue.
While some women are left in excruciating pain, some women hear those stories and decide not to have the procedure—I am not sure which is worse. No woman should feel discouraged from attended a hysteroscopy appointment for fear that they could experience pain, because, as mentioned earlier, hysteroscopies are an essential tool in diagnosis and treatment of women’s health.
The Royal College of Obstetricians and Gynaecologists’ guidance states that all pain relief options should be discussed with women. I welcome that those guidelines are being updated, but the clinical guidance currently in use is over 10 years old. Today is not the first time Ministers have been made aware of the seriousness of the issue for women, so why did the Government not ask for the guidance to be updated sooner? Will the Minister tell us what she is doing to ensure that the new clinical guidance will be in place as soon as possible, for all clinicians to use? We must ensure all women have access to the pain management they are entitled to. How is that being monitored, because it does not seem to be happening currently?
Improvements in hysteroscopy care are included in the women’s health strategy, which was published late last year, as the hon. Member for Thurrock mentioned. The Minister is responsible for the women’s health strategy, and it is her ambition that women and girls report better experiences of procedures, such as this one. However, the Minister’s letter, setting out her year 1 priorities, which she sent around last week, did not mention hysteroscopies. How many women will continue to have the procedure in pain, or not at all, as a result of it not being considered a priority? Will the Minister explain to us, and to all those women who face having the treatment, why it is not considered a priority?
Finally, painful hysteroscopies are just another iteration of no care being given to women and their health. Yet again, women have been given empty promises of improved care. How many more stories must we hear about women in unnecessary pain? How many more times must we hear that women are not listened to in healthcare settings? And how much longer must women wait for the healthcare they so desperately need?
The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)
It is a pleasure to serve under your chairmanship, Sir Mark. I congratulate the hon. Member for West Ham (Ms Brown) on securing this important debate. As Minister, I also responded to her debate on the subject last year and I recognise her campaigning on the issue.
First and foremost, I recognise the pain suffered by women during the hysteroscopy procedure. Many women have contacted me to share their stories and distress. The testimony of the shadow Minister, the hon. Member for Enfield North (Feryal Clark), was powerful in explaining the distress the procedure can cause.
We have seen some progress around the tariff issue, which I will touch on later in my remarks. Last year, the tariff system financially rewarded out-patient settings that undertook hysteroscopies, but that has changed. However, I take the point made by the hon. Member for West Ham about getting it right first time. I may be doing the same with a new initiative, so I will certainly commit to looking at that.
We heard about patients such as Julie, and about how, right from the very start, an appointment letter is sent out that does not provide information about what to expect or the choices that are available. We heard about the procedure itself, including what pain relief is given, and the need to give women informed consent—they can have a general anaesthetic or ask for the procedure to stop. Another 30 seconds is not the answer to “stop”, and that would be my first concern.
My hon. Friend the Member for Thurrock (Jackie Doyle-Price) made a valid point about why the procedures are being done in the first place, and the testimony of Martha lends itself to that. Bleeding after HRT is very common for the first three to six months, and it is usually only after six months, or if there has been bleeding after long periods of non-bleeding, that perhaps an investigation could be considered. My hon. Friend pointed out that sometimes we carry out the procedure where there is not necessarily a clinical case for it. Both the procedure itself and the reason for it need to be justified in those cases.
As the shadow Minister said, hysteroscopy is an essential investigative tool. We do not want to put women off coming forward for diagnosis of their conditions or for investigations into distressing problems—whether it be heavy periods, miscarriages or difficulty getting pregnant—but it is true that women’s experiences of pain, and sharing those experiences with friends and family, can put women off or prevent someone from coming back for treatment or further investigation. Many women experience little or no pain, but the percentage that do experience pain is of significant concern.
The hon. Member for York Central (Rachael Maskell) highlighted the experience of Jan and the sheer scale of her pain. That was very powerful, and I reiterate to Jan’s husband, Steve, that her voice has been heard very powerfully in the debate. I am keen that we make progress on the issue, because we, like the hon. Member for West Ham, who comes on an annual basis, have been talking about it for far too long. I am keen to meet with the Campaign Against Painful Hysteroscopy group, and hope to do so fairly soon, to discuss how we can take the issues forward. A general anaesthetic can be used in some circumstances, but there are also a range of other anaesthetics—it does not have to be general anaesthetic—to make the procedure less painful.
For most women, the first issue is choice, having information about what to expect up front and being able to make a decision based on that. That needs to be done in advance of the procedure and not, as my hon. Friend the Member for Thurrock described, when your legs are in the stirrups. That is why the guidance is so important. The Royal College of Obstetricians and Gynaecologists provides evidence-based guidance. It is old, and it is being updated. My understanding is that RCOG is producing a good-practice paper on pain relief and informed decision making for out-patient hysteroscopy that will be published imminently— I understand in days rather than weeks or months. I committed in the debate last year to wait for that, and I hope that it will be through fairly soon. If we can get those good-practice guidelines, it is essential that they are rolled out in practice.
Ms Lyn Brown
I do not really know how to phrase this, but part of the problem is that, as we have heard, gynaecologists are basically being utterly insensitive to the needs of the women they are treating. My anxiety is that we will be told, yet again, that it is all okay, and that they have changed this or tweaked that. But the stories that we have heard today are from this year, so there has not been change. I am not sure whether we will be able to manage change unless the Minister is quite firm about the actions that she wants to see.
Maria Caulfield
I very much take the hon. Lady’s point. The change to RCOG guidance is not the only way we will change this. The hon. Member for Strangford (Jim Shannon) highlighted his wife’s experience, which also shows why this is so important. The royal college is important because it can bring clinical change on the ground, but it is not enough just to assume that its updated guidance will be enough to change what happens in practice. Its current guidance already sets out that a leaflet should be provided with information about what a hysteroscopy is, what happens, and what the possible risks and alternatives are, but that does not always happen. Women can choose whether to have their hysteroscopy in an outpatient setting or have a general anaesthetic and come in as a day case. They do not always get that leaflet now, so just changing the guidance does not necessarily mean that we change the practice, and that is the key.
It is important that women are in control when it comes to hysteroscopies, which we are talking about today, and many other issues that we have debated. That is the fundamental principle behind the women’s health strategy, which we introduced because women are very often not listened to in all aspects of their healthcare.
The hon. Member for Enfield North touched on the top priorities for the first year of the women’s health strategy. The reason that hysteroscopy did not make that list is that we want to wait for the guidance before we act, but it will be a high priority, and work is starting this year.
One of the key priorities is to provide better information to women and girls about their health. We are setting up a space on the NHS website for women’s health so that women who are going for a procedure have go-to information. If they are thinking, “I don’t know what a hysteroscopy is. I don’t know what sort of tests I need. I am going for an ultrasound, but what else might they suggest to me while I am there?” they can go to that site and get reliable information that will help them make that decision. If they are not sent a leaflet and the procedure is not discussed in the clinic, they will be able to know in advance what to expect. We want that to happen this year so that women have more power when making decisions about their healthcare needs.
Waiting times for gynae procedures have not come up much today, but we know that the covid pandemic has had an impact on them. Gynae procedures are part of the elective recovery plan, which is why we are investing in community diagnostic centres to get those waiting lists down as quickly as possible. It is hoped that by having specialist centres such as community diagnostic centres, which are specialists in doing diagnostic tests, we may be able to improve women’s experience.
One of the things that will make the greatest difference is the appointment of Professor Dame Lesley Regan as the first women’s health ambassador—my hon. Friend the Member for Thurrock mentioned her. She is a female gynaecologist, and she completely gets the issues facing women. We also now have the patient safety commissioner, Dr Henrietta Hughes, who was appointed last year. She is a female GP. Dame Lesley has been passionate about this issue for many years and has been working with women’s groups on it. I have asked her and Dr Hughes to discuss hysteroscopies. They are planning a roundtable on the issue to get stakeholders round the table to discuss how we can make things happen in practice. If guidance is issued, how do we make sure that is what is happening on the ground? The roundtable will be chaired by Dame Lesley, and the patient safety commissioner will be attending. I will update Members on their recommendations, which I will take extremely seriously, and I will want to implement them as quickly as possible.
Rachael Maskell
I am grateful for the Minister’s response. Will she include women from ethnic minority groups? Their experience of the health system is very different, so it is really important that their voices are heard in this discussion.
Maria Caulfield
Absolutely. Dame Lesley has been very keen in some of her first work to ensure that we go out to women, rather than expecting women to come to us with their experiences. Often, if we wait for them to come to us, it is the usual voices that get heard. The people who have the greatest difficulties accessing healthcare are often the ones who get missed, so I can absolutely reassure the hon. Lady about that.
That is why we are setting up women’s health hubs, which are a particular priority of the women’s health ambassador. They are go-to one-stop shops that have experienced women’s healthcare professionals. If someone is going for a smear test, contraceptive advice or perhaps a hysteroscopy, there are experienced practitioners there who can support women’s health needs and perhaps give a better experience than many women have now. We hope to improve women’s experience in those areas.
I say to the hon. Member for West Ham that I absolutely recognise the significance of this issue. It is unacceptable that a test that is so important for women’s health is currently such a painful experience. We changed the tariff in the hope that it would encourage the use of general anaesthetics if that is what women want, because we felt that the previous tariff system worked against that. However, I am really keen that we deliver changes on the ground once we get the royal college guidelines and the roundtable with Professor Dame Lesley Regan and the Patient Safety Commissioner, who are there to advocate for women and patients. I hope that will be within the next few months, and I am happy to meet the hon. Member for West Ham, as I will be meeting the patient campaign groups too.
We can change this behaviour. A woman who is having a hysteroscopy should know in advance what is involved and what her choices are. She should feel confident that if she turns up for her appointment and finds it uncomfortable, which she was not expecting, the procedure can be halted and a separate appointment can be made swiftly to make sure that the procedure is as comfortable as possible. I hope that gives some reassurances that I absolutely take the seriousness of this issue on board, and that we want to make a change and a difference for women.
Ms Brown
We have had a really good debate this afternoon about the serious harms to women, the lack of respect and the lack of regard in this area of healthcare. I am really grateful to all the contributors, including the hon. Member for Thurrock (Jackie Doyle-Price)—we will march on with this one, I am sure. The hon. Member for Strangford (Jim Shannon), who has been at many of these debates, offered his support. My hon. Friend the Member for York Central (Rachael Maskell) shared a story that I recognise, which was tragic and sad. My hon. Friend the Member for Enfield North (Feryal Clark) did not tell me about her personal experiences before the debate—how brave and amazing that she stood up and told us all. I am genuinely grateful for that.
I think we all agree that we need informed consent, individual risk assessments and compassionate care in our health service. We need proper and independent research into the actions that are being taken, and we need action. We do not need to be back here in a year’s time, with me reading out people’s stories again, and we certainly do not need to be led in this debate by those who seek to profit from women’s pain.
I say to the Minister that the gynaecologist who saw my hon. Friend the Member for Enfield North was a woman. A few years ago, the gynaecologist who tried to talk me—a childless woman with a frozen cervix—into a hysteroscopy without an anaesthetic was a woman, and I worry that the idea that this is a pain-free procedure is somehow baked into the gynaecological community. However, I express my gratitude to the Minister for offering to stay in touch on this issue. Hopefully, we can get some resolution to the betterment of women’s health generally in the country.
Question put and agreed to.
Resolved,
That this House has considered the matter of NHS hysteroscopy treatment.