NHS Hysteroscopy Treatment

Lyn Brown Excerpts

Monday 31st January 2022 Commons Chamber

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

I am, frankly, very disappointed to have to be raising this issue again in this House. This is the ninth time I have spoken about this, and it is more than eight years since my first speech on this topic. However, the problem of pain and trauma caused during hysteroscopies has not gone away. I want to pay tribute to the Campaign Against Painful Hysteroscopy, who do so much to let women know that they are not alone, that their experience has not been singular, that they were not making it up and they were not hysterical; they were experiencing great pain and discomfort. That campaign offers comfort and a productive outlet for their utterly justifiable anger. My hope is that this Minister will not only take this issue away, but will commit today to getting action at a national level, because it is a true scandal that these horrific abuses are still taking place. Let me be really clear with people. Every time I speak, I have new stories, because women hear my speech as they reel from fresh abuses and they get in touch. So all these stories that I am going to recount today have happened since my last speech on this issue.

I will start with the story of Jane, who had a hysteroscopy late last year. Jane had been warned by her excellent GP that the specialist might attempt to talk her into a hysteroscopy without anaesthetic, and that she had the right to insist on proper pain relief. After all, she has several well-recognised risk factors for pain during hysteroscopy, including endometriosis, a tilted uterus, and never having had children. Fully aware of that, Jane received a letter for an appointment about the results of an ultrasound scan she had had. The letter said nothing about a hysteroscopy, and nothing about her risks or her right to anaesthetic, so she went along expecting simply to have a discussion with a consultant about the results of the scan. But when she got there, she was informed that the consultant wanted to do a hysteroscopy there and then. She said immediately she wanted a general anaesthetic, and explained that she had had terrible pain from similar procedures in the past. Shamefully, the consultant’s response was to laugh in her face and say

“if we gave a general anaesthetic to every woman who had a hysteroscopy the queue would be a mile long”.

To laugh at a woman in distress in that position, I find abhorrent.

Jane was scared. She shook but she felt she had no choice but to comply. She told the doctor and nurse what she had heard about the pain, but they told her not to believe everything she read. She told me that

“as soon as the speculum went in I felt immense pain that was absolutely unbearable...the doctor was having difficulty finding the opening to my cervix so twisted the speculum and dug around, which caused indescribable pain, I felt I might pass out, I had tunnel vision”—

and she was “shaking and hyperventilating.”

At that point, thank heavens, the procedure was stopped but, unbelievably, the doctor said that he simply did not understand why Jane was in so much pain and causing such a fuss, which only worried her more, because it increased her concern that she had cancer. Even after all that, the doctor was still unwilling to consider a proper anaesthetic. Instead, he prescribed a hormonal pessary and suggested that she come back for another go in a fortnight.

Jane was in a fog. She does not remember anything other than getting home and curling up on the sofa, shaking with shock. She has relived the experience over and over, unable to move on because of the threat that she would have to go through it all again without pain relief. She has had trouble sleeping and has had to take time off work because she cannot concentrate. Understandably, Jane believes that she has post-traumatic stress disorder. She told me that she was actually more afraid of having another brutal experience than she was of dealing with possible cancer. How much will the late detection of cancers resulting from this fear cost our NHS and our families? I emphasise to the Minister that this is not major surgery; it could be essentially painless if only proper anaesthetics were offered.

The last I heard, Jane will now have a hysteroscopy with a general anaesthetic. I am praying that she does not have cancer, because if she does, the months-long delay caused by her mistreatment and the callous attitude of that doctor could be deadly to her. What estimate have the Government made of the added cost of failed hysteroscopies that must then be repeated with anaesthetic? Jane is not alone in her experience and in having understandable distrust of the NHS and doctors as a result of her trauma.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady on her speech. I was there the last time that she brought this issue to the House, as I am tonight, because my wife has been through the experience that the hon. Lady referred to. As a result, I think it is important that I am here to support her not just for my wife, but for every other lady across the United Kingdom. Pain relief is a way of providing much needed reassurance for women who are having hysteroscopies. This is a potentially life-changing treatment and women must be enabled to be as comfortable as possible—I see how important that is. Some 35% of the women who undergo anaesthesia-free hysteroscopies reported severe pain. Does the hon. Lady agree that the pain medications and anaesthesia must be readily available for those who need it? No one should have to live in this day and age with severe pain that cannot be taken care of.

[Ms Brown]

I agree with the hon. Gentleman and I am grateful for his intervention. I know he has been in these debates with me, and he makes the same point: no woman should have to go through this. No woman should be held down while procedures happen because they are screaming with pain and they want the pain to stop.

Another woman who contacted me about a hysteroscopy that took place last year told me that she had never experienced so much pain—not from a hip operation, nor from having her spleen removed. As a result of her traumatic experience, she now has anxiety and has been prescribed tablets by her GP just to help her function with the day-to-day. Like Jane, she is losing sleep and no doubt her broader health has been harmed by this. She does not know whether she has cancer, but she told me that she is now too scared to go to the hospital for anything.

There are so many stories that I could have told today. I am sent so many of them, despite the fact that the issue does not get a huge amount of press. Women who experience this are seeking out me and the charity I work with to tell us about it. If there were more publicity, more women would come forward. I really hope that the Minister understands that this is an issue of patient safety, but also an issue of common decency. It is an issue of confidence in the medical professions and the NHS, and it will be costing us all, both in money and in lives, because problems simply are not being caught early enough.

[Liz Twist (Blaydon) (Lab)]

I have the privilege of co-chairing the all-party parliamentary group on women’s health. We held a meeting at the end of last year to talk about women and the health service, and I must admit that the meeting lit up when one of the medical people spoke about women’s experiences and, in particular, hysteroscopy. I could not believe what happened on my Twitter feed immediately afterwards. So many women were sharing their experiences, listening and saying, “We are entitled to have our experiences of pain validated, and to not have to go through that pain.” Does my hon. Friend agree that the women’s health strategy, which we will be talking about increasingly often, must involve accepting those experiences and seeking to listen more to women, validate their experiences and ensure that the right anaesthetic and treatments are provided?

[Ms Brown]

I entirely agree with my hon. Friend, and that will indeed be an ask I have of the Minister at the conclusion of my contribution. My hon. Friend is right: women are not listened to. When they tell a doctor, “This hurts. I am in pain and I can’t bear it,” their experiences are not considered valid. They are told that they are being hysterical or overreacting and that they need to be as strong as the other woman he saw last night, last week or whenever, and to not be such a baby in demanding that the procedure be stopped.

Another case from last year is that of Sandy. When Sandy was referred for a hysteroscopy, she was told that pain was a risk, but the information that followed about local pain relief gave her false reassurance. She assumed that it meant some kind of anaesthetic. When she met the clinician, he told her that it would be like period cramps. When she asked about pain relief, he just repeated, “No more than just period cramps, if there’s any pain at all.”

Sandy was well acquainted with period pains. She had had coils inserted and had given vaginal birth twice, one with no pain relief, so she knew she was tough and she thought she would be fine. But when the hysteroscope reached Sandy’s uterus, she felt

“the most incredible, searing, tearing pain I have ever experienced. I found the arms of the bed to grab onto and could hear myself shouting no no no stop stop stop.”

Madam Deputy Speaker, you will be glad to hear that on this occasion the clinician did actually stop, but I would say that by that point the damage had already been done. Sandy has no memory of any questions asked or what the clinicians said to her afterwards. She just remembers the pain, the shaking and the shock. She was completely and utterly dazed, but scant minutes after enduring this, Sandy was ushered out the door. She was given no time to rest and recover, and she was so confused because she had been made to feel that she had made a terrible fuss about nothing. Sandy then had to drive herself home. She told me that she has gone from being fearless and confident to being terrified of going back at all.

Finally, I want to mention Penny. She told me what happened after her “brutally painful failed hysteroscopy”. She strongly, and understandably, believes that she was misled about the risk of pain, because if she had known, there is no way she would have consented to having the procedure with just painkillers. Immediately after Penny went through the same agony that I have just described, she had an assessment with a nurse. The nurse told Penny how she had seen many women like her traumatised and in tears after hysteroscopies. The nurse said that she would never, ever go without a full anaesthetic herself, and that to do the procedure on women with no anaesthetic was barbaric. Penny was deeply and rightly angry to hear this, and the nurse was very clear that women were going through this without being fully informed of the risks.

Let us be really clear: the women I have spoken of today are the tip of a massive iceberg. That nurse is right, the GP I mentioned earlier in the debate is right, and there are many others within the NHS who recognise that this is simply unacceptable. So what needs to change? Frankly, there is still a massive problem with the attitude that many doctors take towards women patients. Our words and our wishes are ignored, and when our words are ignored, our rights are ignored. That has got to end, and I believe that that takes a culture of change. I do not accept that there are just a few badly trained, uncaring or even sadistic doctors. There is a broader problem that the Government and the NHS must address.

The Government have talked previously about a women’s health agenda, and before that there was the women’s health taskforce. Now, there is going to be a women’s health strategy. Believe me, the word “strategy” is music to my ears, but I want a guarantee from the Minister today that tackling painful hysteroscopy will be a core issue. That is my first ask. The patient groups that have been raising this issue so forcefully over many years must have a seat at the table in discussing and monitoring that strategy. These issues are common and the structure of the NHS is complex and obscure; it is failing to listen. So we need to find ways to ensure that patient outcomes for hysteroscopies are measured and monitored alongside the strategy.

My second ask is for all NHS trusts to offer patients who need a hysteroscopy a full range of anaesthetics and to inform them accurately about the risk factors for serious pain, so that all women can make an informed decision. That will require more anaesthetists and theatre capacity for hysteroscopy patients. My third ask is that the Government ensure that this investment is made, and that the commissioning decisions required are being made by NHS trusts. In my view, this is something that the women’s health strategy should be measuring and monitoring, alongside robust evidence on women’s experiences of NHS hysteroscopy, over the coming years.

How many hospital trusts are actually following the guidance to offer anaesthetics up front to all hysteroscopy patients? How many offer a range of effective anaesthetics and have trained staff to discuss women’s risk factors so that they are given an informed choice? How many women are forced to endure a traumatic failed hysteroscopy without pain relief, with public money wasted as a result, only to have another procedure under anaesthetic?

How many patients do not even know they are going to be asked to have a hysteroscopy until they attend an appointment, with all the pressure that that involves? Can Members imagine going to a doctor in a hospital because of a fear that they have cancer and that doctor telling them they are going to do a hysteroscopy right now? Can Members imagine how much pressure there is on a woman to accept that procedure there and then because of the fear of what might be there and how long they might have to wait? They do not want to upset the doctor, do they? They might have something really awful that needs to be attended to immediately.

Any women’s health strategy worth its name would make sure that the answers to the questions I have asked are known and that we are moving in the right direction on all those issues. I am delighted to say that the best practice tariff on hysteroscopy, which financially incentivised the mistreatment of women, is now gone. We had a system under which our hospitals were paid more for hysteroscopies done without anaesthetic than they were paid for those done with anaesthetic. I am thankful that that incentivised mistreatment of women has now gone. That is a massive achievement for the campaign.

Several previous Ministers have engaged with me on this issue—the hon. Member for Thurrock (Jackie Doyle-Price) was very good on it when we spoke—and I thank them for hearing me. One benefit is that trusts are now paid the same amount for out-patient and day-case hysteroscopies. That is far better than it was, but it can still cause problems, because day-case procedures with anaesthetic cost more. If a trust will not be compensated for the difference, it might still decide to try to limit access to pain relief, because it will know that if anaesthetic is given, it will not receive a benefit in kind to pay for that procedure. We need to know that individual trusts are actually changing their behaviour and attitude in response to the progress that has been made. If they are not, we might need further action to ensure that no trust will lose money by doing the right thing and providing the pain relief that a woman needs.

I am sure the Minister will be slightly alarmed by an increase in demand for anaesthetists and theatres, and we all understand the massive covid backlog that the Government and the NHS face. I reassure the Minister that both regional or spinal anaesthetic and intravenous sedation with anaesthesia may be good options for many hysteroscopy patients, depending on their needs and risk factors. The NHS has got to offer a real choice in the range of anaesthetics, not a false choice between a general anaesthetic and no effective pain relief at all. It is simply wrong that if a man needs a colonoscopy, the chances are that he will be offered an effective anaesthetic without question, whereas if a woman needs a hysteroscopy, they may be forced to endure such terrible trauma that it shakes them to the very core ,and then made to feel pathetic when they cry out in pain.

I am not going to stop raising this issue, and the courageous women I have been working with will not stop either. I want to work with the Minister on this issue, as I have with other Ministers in the past, and I hope the Government engage fully, because we need to end this scandal and ensure that women are treated like human beings in every single part of our NHS.

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

I congratulate the hon. Member for West Ham (Ms Brown) on securing this debate. I thank her for all her hard work. I am very sorry that she has been speaking about this issue for nine years and is still having to share some of the stories and experiences of women who have contacted her, whether that is Jane, who was unaware of the potential for pain when having such a procedure—women being investigated for endometriosis often wait eight to 10 years to get a diagnosis, so if there is an offer of a procedure to find the cause of their problems, of course they will grab it and not necessarily ask questions about what is involved; or Sandy, who got no information on pain relief at all, or Penny. Penny was warned by the nurse—often nurses are attuned to these things—and was worried about what the outcomes were, but went ahead with the procedure. These are shocking tales that should not be happening in this day and age. I appreciate everything that the hon. Lady says, and I offer that I will be happy to work with her on this issue.

As Members will be aware, hysteroscopy is an essential tool to get to the bottom of many complaints. Whether that is cancer, endometriosis, vaginal bleeding or pelvic pain, it is a necessary test. While other tests can be used, they do not necessarily get to the level of clinical detail that a hysteroscopy can provide for clinicians. It is therefore important that the test is available for women, but in a way that does not create the problems we have heard about this evening.

Many women can have the procedure as out-patients in 10 to 15 minutes and it can be relatively painless, but many women, as we have heard today, experience great pain, which puts them off from coming back if they need further procedures, as the hon. Lady has said. If they share that story with other women they know, it can put them off from coming forward, too.

Unfortunately the NHS does not collect data on the number of women who experience pain during a hysteroscopy or the women who fail to have the hysteroscopy and then need to have either a general anaesthetic or further anaesthetic later on. I am aware that the Campaign Against Painful Hysteroscopy estimates that between 5% and 25% of women are affected and have reported severe pain, and frankly that is not good enough. I welcome that NHS England will be meeting the campaign group on 4 February. I look forward to hearing the outcome of that meeting, and I will be following up any recommendations after that.

The hon. Lady is right that for many procedures a man would undertake, anaesthetic is probably routinely provided or offered. We need to ensure that the same applies to those procedures that women have to go through.

There are guidelines in place, and I spoke only last week to the president of the Royal College of Obstetricians and Gynaecologists, because I knew this debate was coming up. Those guidelines were published back in 2011, and they need updating. The guidelines focus on minimising pain and optimising the woman’s experience, as well as making specific recommendations on how to reduce pain, but as the hon. Lady said, we do not have the information to know who is and is not following those guidelines. We are therefore not in a position to say whether, if those guidelines were followed, many women would not experience pain, and that is the difficulty we have. The data is therefore crucial.

In the last debate that the hon. Lady secured on this issue, which I think was in September 2020, my predecessor, the right hon. Member for Mid Bedfordshire (Ms Dorries), informed the House that to ensure the recommendations were robust and up to date, the royal college would be producing a second edition, in which it will assess whether the current guidelines are effective and are being used. The second edition is being jointly developed with the British Society for Gynaecological Endoscopy, and I am assured that patients’ voices will be at the heart of its development. The royal college has informed me that good progress is being made, and that it will have the updated guidelines by next year.

[Ms Brown]

Can I ask specifically that we involve the campaign, because that would be one way of assuring me that the voices of patients are being heard?

[Maria Caulfield]

I said to the president that I would follow up after the debate, so I can certainly make that request.

The royal college has also said that it is producing a good practice paper specifically on pain relief and how informed decisions should be made, particularly in out-patient hysteroscopy procedures. It is going through the peer review process next month and will be published shortly afterwards. Once it is published, I would be very keen to hear from campaign representatives about whether they feel that those guidelines would make a difference to them in a practical session.

It is crucial that women who are offered a hysteroscopy are given the information they need to make an informed decision, given that they have sometimes waited a long time for the appointment and that serious clinical conditions can be diagnosed from it. That should include information about potential pain, options for pain management and alternative procedures that could be used.

The Department and NHS England recommend that, as part of good practice, the royal college’s patient information leaflet, which was published in 2018, should be provided to patients to aid decision making. I think that should be provided in advance of the appointment, because it is often hard for someone to take in all that information in the midst of a consultation. Again, I would be interested to hear from the campaign whether that is happening in practice.

The House will also be interested to learn that the British Society for Gynaecological Endoscopy recently published a statement to clarify that from the outset women should be offered

“the choice of having the procedure performed as a day case…under general or regional anaesthetic”.

It further asserts that the procedure should be stopped immediately if a woman experiences pain.

I encourage any woman offered a hysteroscopy to read those valuable resources along with any additional resources provided by their clinician. I agree with the hon. Lady that women often do not understand what a hysteroscopy is or what is involved, and debates such as this highlight how important the procedure is, the options around pain relief and the different anaesthetics available.

The hon. Lady touched on the tariff. Previously, there was a different rate of payment for hysteroscopies carried out in an out-patient setting compared with in-patient procedures. I recognise that that is a concern for many hon. Members on both sides of the House because of how it affects patient choice and the choices that are offered to them. In the last debate on the topic, my predecessor announced a statutory consultation. I am pleased to say that as of 1 April, hysteroscopy out-patient procedures will no longer attract a higher tariff than elective procedures as an in-patient day case. That will hopefully make a difference to the choices offered to women.

[Ms Brown]

That is absolutely true and we are delighted about that; I welcomed it in my speech. The problem that we now have is that if a hospital offers an anaesthetic, it does not get compensated for the resource that it has used. We need to go one step further to ensure that there are no incentives for not offering women proper anaesthetic.

[Maria Caulfield]

I completely agree with the hon. Lady. She made a point about having the data to see how many hysteroscopies fail and whether that money could be better spent on offering an anaesthetic up front to many women. I do not have an answer to that, but it would be interesting to look at that information.

Alongside clinical guidelines and access to high-quality patient information, I stress the importance of the voices of patients, which are critical at every stage of the treatment pathway. Decisions should always be discussed and shared between clinician and patient. The Government are committed to ensuring that the voices of women in particular are more central in the healthcare system.

The women’s health strategy has been touched on several times. We have also taken key learnings from reports such as the Cumberlege review, where women were talking for a long time about the issues that they faced before anyone truly listened. We need to improve that so we are not learning from such incidents after nine years of raising them on the Floor of the House. The women’s health strategy will include gynae issues such as endometriosis and polycystic ovary disease, which are conditions that do need a hysteroscopy, so I am pretty confident that we will cover that in the strategy. We will also have a women’s health ambassador—they will be appointed in the coming weeks; applications are almost closed—with whom I will meet. I want them to lead on these issues, where they can be a real voice for patients, do a deep dive into what is happening at the coalface and speak up for women if it is not working. We have guidelines, but we do not know whether they are being used in clinical practice. From what the hon. Lady says, it sounds like there are clearly issues that need to be addressed.

I reassure the hon. Lady that I am happy to work with her on this issue. Improving the tariffs is one thing, but there are still women who are not getting the information that they need to make informed decisions about pain relief and anaesthetic that could be available. I welcome the new information from the Royal College of Obstetricians and Gynaecologists on pain relief specifically for this procedure, which will be out next month, and I will feed back to it on updating the guidelines to ensure that patients are involved in the process.

I thank the hon. Lady for raising this important matter. I hope that we have raised its profile and that women are more aware of their options. When they go to that clinic appointment, they can ask for pain relief, they can have it as an in-patient, and they do not need to have it right there, right then. I look forward to continuing to work with her and all Members across the House to ensure that women are offered a hysteroscopy and can access the information they need and the care they deserve.