I entirely agree, but the importance of early action is sometimes used to encourage or even force women to stay with a procedure that is causing them great pain because of the fear of what might happen afterwards. If the hon. Gentleman gives me a moment, I will illustrate that point.
In October, I heard from Jenny, who has undergone two hysteroscopies, both of which were traumatic. She told me:
“My first experience was shocking. I wasn’t prepared for it. The doctor didn’t warn me at all, and during the procedure I experienced the most unbearable pain ever and I almost fainted. I rose up from the bed that I was on and I shouted out. It felt like my insides were being ripped out. I wasn’t given the option to stop nor was I given any support.
The nurse was behind the doctor throughout the procedure and just watched as I suffered. After the procedure my legs were like jelly. I felt faint and in pain but I wasn’t even helped off the bed, I wasn’t even given a sanitary towel to help with the bleeding. I left the room and drove myself home in that state, I’m lucky I didn’t have an accident. I felt traumatised, in a state of disbelief and shock.”
What is even more shocking is that Jenny’s second hysteroscopy was also traumatising, even though she now knew the risks and had taken steps to ensure that the same thing would not happen again. She explained to her doctor what had happened and requested a female doctor the next time. Her doctor said that she would write that on the referral, and at her pre-hysteroscopy appointment Jenny was told that she could have an injection to numb the area. She was reassured and trusted the female doctor to be more careful, but the procedure was—again—horribly traumatising. Jenny said:
“My god it was shocking, I once again shouted out and raised from the chair this time. The nurse was trying to calm me down…while the doctor said she would stop at any time but she needed to go in again and take a biopsy. I was told that if she didn’t...the procedure would be incomplete and I would be left worrying that it could be cancerous. So I endured more excruciating pain.
I wasn’t given the option to come back and have the procedure done under general anaesthetic, which I have now found out could have been an option. I felt tricked into having the procedure.
I suffered with terrible pain for a week after. Mentally I was left traumatised and still am to this day.”
Understandably, Jenny is now scared about any gynaecological procedure—including smear tests, which she knows are essential for her health.
This autumn, Annie got in touch. Annie had had ultrasounds and smear tests before; like many others, she was given literature about her hysteroscopy that made her think that it would be no different. She was advised just to take paracetamol and ibuprofen before the appointment, and she felt confident. She told me:
“As the procedure began, I felt instant pain, so unexpected and intense that I began to cry and panic within seconds. I was asking the nurse if this was normal as I was so scared there was something wrong, and she nodded to reassure me. I couldn’t get my words out, I was panicking, going into shock. She offered me her hand to squeeze through the pain. I tried to be strong, but I couldn’t, I was yelling out in pain, shaking and crying.
The nurses were telling me to relax my legs but it was impossible. When the Dr began the biopsy it was by far the worst pain I have ever suffered. I was hyperventilating and the nurse was telling me to breathe, but I couldn’t. I endured pain for 15-20 minutes.
I was asked to wait before I stood up, and I was so traumatised and sobbing, I just couldn’t move.
After a couple of minutes I got up and had to put on a sanitary towel and get dressed. It was hard—I was disoriented and shaking.
I sat with the Doctor who told me that due to it being too painful I have to have polyps removed under general anaesthetic. I could barely talk to him due to shock and tears. I wasn’t even offered water, and nobody asked me how I was getting home.
I cried from leaving the hospital at 2 until my wife arrived home at 6, at which point I broke down uncontrollably in her arms. I felt violated and abused, and the procedure felt very very wrong.”
As we know, women are still having these terrible experiences. I received another story in the past two weeks, but I do not have time to share them all. Women are still leaving NHS care feeling violated, and it ain’t going to stop unless we choose to stop it. I am very grateful to the Campaign Against Painful Hysteroscopy for providing support to those women and making sure that they are heard. The campaign group’s petition has received more than 47,000 signatures, which demonstrates that this is not an unusual, occasional thing.
We have four asks. First, if we are to stop patients from being violated or misled, all NHS trusts need to provide accurate information that enables women to give genuinely informed consent. I was pleased to hear from the Minister that her Department is developing tools to improve hysteroscopy care; I look forward to hearing her elaborate on those tools, but involving patients will be essential to making them work. The campaign wants to see a new patient information leaflet made available across the NHS. Campaigners have been working with the Royal College of Obstetricians and Gynaecologists and with specialists to create an appropriate leaflet that patients who have had negative experiences of hysteroscopy have helped to write, but it still needs to be rolled out.
The leaflet needs to be honest with patients. It needs to warn that there is a real risk of severe pain during out-patient hysteroscopy, and explain the risk factors that make pain more likely. They should tell patients that they have the right to ask for the procedure to be stopped at any time and for it to be rescheduled with a full anaesthetic. Hospitals should no longer have any excuse to hand out literature stating there will only be
“mild discomfort, just like a smear”.
After they have read through the leaflet, patients should be given an opportunity to discuss with a trained doctor what is going to happen during the procedure—whether a sample is going to be cut out for a biopsy, the risks involved, and the anaesthetic choices available. The campaign suggests that both patient and doctor should then sign a consent form to confirm the discussion has taken place and the choices the patient has made.
Our second ask is for improved training to enable better and more consistent care. We know that hysteroscopy can be a painless experience for women—some women will experience little pain from hysteroscopy even with minimal anaesthetic—but as we have heard, for others it will be like torture. There are some risk factors—older women and women who have never had children are far more likely to experience severe pain during hysteroscopy—but we cannot tell in advance what someone will experience, and that means we have to improve the guidelines and raise standards through training. The current national guidelines, produced by RCOG and the British Society for Gynaecological Endoscopy, do not recommend several forms of anaesthetic that I am told could be helpful. That has to be looked at, because, for some patients, stronger forms of anaesthetic might be the only way to have a hysteroscopy without experiencing severe pain.
Once we have changed the guidelines, investment in training will be needed to embed new best practice across the NHS. Hysteroscopy nurses should be routinely asking for patients’ pain scores during the procedure, so that informed decisions can be made about whether to continue or to stop. We need to audit pain scores and keep records of how comfortable the surgeon was with continuing, so that we can monitor whether more training is necessary. It should be a basic element of training that hysteroscopy teams should simply stop the procedure if a patient is suffering severe pain—not just hold them down—and reassure the patient that the procedure will be promptly rescheduled with more effective anaesthesia, rather than using the threat of possible undetected cancer to encourage her to continue.
Our third ask is for enough resources to enable all NHS bodies, everywhere in the country, to give women the choice between different anaesthetics when they need a hysteroscopy. The problem is not just flawed guidelines and inadequate training. Trusts may be loth to enable anaesthesia beyond over-the-counter painkillers or local anaesthetic simply because other methods are more expensive. Some are in-patient procedures, and some require clinicians to have specific training, and we all know that that comes with extra costs.
Our fourth, and possibly most important, ask is for a change to NHS incentives for hospitals. According to the information we have, the Department of Health’s quality, innovation, productivity and prevention tariff encourages trusts to promote hysteroscopy without anaesthetic, rather than offering an open choice to women. Annex F to the 2017 to 2019 national tariff payment system is explicit:
“For...diagnostic hysteroscopy...the aim is to shift activity into the outpatient setting.”
The best practice tariff
“is made up of a pair of prices...one applied to outpatient settings, the other to...elective admissions. By paying a higher price for procedures in the outpatient setting, the BPT creates a financial incentive for providers to treat patients there.”
The national target is for the risky out-patient hysteroscopies to increase to 70% of the total, up from 59%. The Department for Health is not working to reduce pain and trauma for women—it is incentivising hysteroscopies without effective pain relief and is taking our choices away. It has to stop, and I hope the Minister will look at how she is going to stop it.
Those are our four asks of the Government, and I think the Minister will agree with me that they are entirely reasonable. I do not believe they would be massively expensive to implement, and we should also consider that current NHS practices may not be cost-effective. Women who have undergone a painful hysteroscopy may not return for other gynaecological tests and procedures. If they do not have those early preventive interventions, more costly interventions will be needed later.
Some action has already been taken. The issue has been raised with the national medical director of NHS England. I thank the Minister for that, and for launching her women’s health taskforce, which I would be interested to hear more about today.
I would like to say something about the history of the hysteroscopy campaign and the amazing women who have led it—I am delighted to see some of them in the Gallery today. With their support, I have regularly been raising this issue in the House for four years now. I cannot say progress has been easy or swift. At times I—we—have been ignored by the Government, despite strong cross-party support every time I have raised the issue. I have been left concerned that officials at the Department of Health, and some senior NHS managers, have not been willing to engage with the problem of women’s pain when the NHS is under financial stress.
However, this last year has been more hopeful. The Minister met me and a core group of campaigners last year, and listened with compassion to their stories. I believe she has taken this cause as her own. I am waiting with bated breath to hear what she is going to say today, and to hear about the rapid and dramatic progress we are going to be able to make on this issue over the coming year.