NHS Hysteroscopy Treatment

Lyn Brown Excerpts

Thursday 24th September 2020 Commons Chamber

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

I am really grateful to you, Madam Deputy Speaker, and it is really good to see you.

This is the eighth time I have raised in this House the way women are treated by the NHS when they need a hysteroscopy. I have always had a sympathetic hearing. Throughout the years, I have given voice to an ever-growing group of courageous women, the Campaign Against Painful Hysteroscopy. I am sad to tell the House that the issue has not been resolved. Far from it. Women are still being denied the right to provide informed consent and having their pain ignored while a procedure is performed, and some suffer lasting trauma as a result of a hysteroscopy.

For those who do not know, a hysteroscopy involves a camera probe being inserted into the womb, past the cervix. Sometimes, a sample will be cut away from the woman’s womb for examination—it will be cut away from her womb. A hysteroscopy can be an important tool for diagnosing the causes of common problems, such as unusually heavy periods, unexplained pain or bleeding. It can enable life-saving treatment to begin, or provide invaluable reassurance that a problem being experienced is not caused by cancer.

It is true that for some women, sometimes, a hysteroscopy causes only minor discomfort, but for others it causes agony and a sense of violation, because hysteroscopies are often carried out in NHS hospitals with little or no anaesthetic. Frequently, women are simply advised to take paracetamol or ibuprofen for the pain.

[Jim Shannon (Strangford) (DUP)]

First, may I say how nice it is to see the hon. Lady back in the Chamber? I am very pleased to see her.

Someone very close to me is going through this particular thing at the moment, so I understand exactly what the hon. Lady refers to. Does she agree that some women’s experience of this treatment is truly extreme, and that pain medication must be made available for those who need it, as opposed to stopping and sometimes redoing the procedure?

[Ms Brown]

The hon. Gentleman is absolutely right. It is a delight to see him in his place, too. I will come to the lack of pain relief for women and just how damaging that can be for them, not only in that moment but often for their ongoing healthcare, because it creates fear and a barrier.

Massively improved information leaflets have been produced by the Royal College of Obstetricians and Gynaecologists, in collaboration with patients. I am also pleased to note that the NHS website, which I quoted from in the last debate, has now been changed to recognise that some women experience severe pain and a general anaesthetic should be an option. However, many women having a hysteroscopy are still not being given this essential information. They still are not having the risk of severe pain discussed with them properly, and they still are not having the option of a more effective anaesthetic offered freely. In truth, these women cannot give genuinely informed consent, and therefore their rights as patients are being violated.

Telling the story of your trauma is very difficult. The excellent women at the Campaign Against Painful Hysteroscopy are still a relatively small group. Despite that, the campaign has collected 1,500 personal accounts of painful hysteroscopy. Previously in this House, I have told the stories of women who have been held down as they tried to stop the procedure, who have collapsed from shock, bleeding in hospital car parks afterwards, and who have been criticised by doctors for their supposedly low pain thresholds because apparently “most women are fine with it”. Today I will raise the voices of three very recent hysteroscopy patients, because I want the Minister to know that this barbarism is still taking place.

Rebecca had a hysteroscopy last year. She was given no information before her appointment, received no warnings about severe pain and was not offered sedation. Fortunately, Rebecca had had a similar painful procedure before, so she asked for pain relief and was offered a local anaesthetic injected into her cervix. That, in itself, was painful, but she hoped beyond hope that it would be worth it, and the doctor reassured her that the procedure had been massively improved. Instead, Rebecca said:

“As the probe was inserted I struggled to believe how severe that pain was. As the biopsies were taken… I could feel my insides being cut away and I had absolutely NOTHING to address the agony of it all! I was trying not to scream, very close to vomiting and fainting. In trying to contain my screams I couldn’t speak—if I had, the screams would have ‘escaped’ and I knew that they would be deafening. The procedure seemed to go on and on. It was barbaric and, as I hadn’t been given any warning, I felt panicked and unsafe.”

After they were “finished” with her, in her words, she says that no one cared that she felt faint, was close to tears and was struggling to walk. Rebecca tells me she felt conned, and not treated as a human being but

“an object to cut bits out of”.

[Rushanara Ali (Bethnal Green and Bow) (Lab)]

I am grateful to my hon. Friend for highlighting what many women have been suffering in silence. The Minister’s reaction to this is profound. Does my hon. Friend agree that the Government must ensure that the national health service provides proper guidance and instruction to practitioners, so that women do not suffer in the way her constituent did?

[Ms Brown]

The reason I am here tonight is to continue the campaign, because it has been going on for some years. I first spoke about this in an Adjournment debate, and an hon. Gentleman I know who sat on the Front Bench took it back to the Department of Health. This campaign has gone on for quite a long time.

Let me tell the House about Vidya. Vidya had a terrible experience with hysteroscopy earlier this year. Vidya has had a vaginal birth. She has experienced that pain, but when the camera was inserted into her womb, Vidya felt such agony that she was not even able to tell the doctor to stop. Like Rebecca, she simply could not scream out. Vidya had not been asked to sign an informed consent form. She was not asked about the level of pain she was experiencing at any time. She said:

“I can’t eat, I can’t go out, I cannot stop reliving the agony in my mind. If I sleep I wake up with terrifying nightmares. I can’t stop crying.”

Like so many of the women who have had to go through this, Vidya has lost trust in healthcare professionals and in our NHS, and I think she is likely to have post-traumatic stress disorder.

I would also like to talk about Alison. She was completely unaware that she was going to have a hysteroscopy until she arrived at the hospital. She had not been sent a leaflet or told anything to prepare her. She had not even had a paracetamol. She said:

“The pain was like I had been thrown into full-on labour contractions. I was crying and screaming out…panting…my heart was racing. The pain was off the scale. After I left the hospital crying in my sister’s arms, she had to help me to the car. I cried solid for 14 hours. This will stay with me the rest of my life.”

Alison’s hysteroscopy took place last Wednesday. These violations of patient dignity and rights are still happening regularly, seven years on. They have to be stopped. I would be happy to send the survey to the Minister, as I have done with previous Ministers, and I hope she will find the time to read through the accounts herself.

Personal experiences are the most important thing here, but there is also new scientific evidence. On 14 September this year, the British Journal of Anaesthesia published an analysis of eight years of data on hysteroscopy outpatients. It found that 18% of patients reported pain at a level of seven or more out of 10, and only 8% reported no pain. Almost 40% of patients were given no pain relief and only 2% were given a local anaesthetic. The doctors and their patients reported back. The clinicians’ judgments about pain seemed to be the very opposite of what their patients actually felt. The doctors who had given an anaesthetic, even a low dose, reported observing very little pain. Sadly, they were not seeing the reality of their patients’ experience. Their patients reported feeling pain when the doctors said there was none. The study suggests that the doctors are, frankly, terrible at judging the extent of the pain of the women in front of them. It also suggests that local anaesthetics are not enough for many women.

We know that our NHS is overwhelmed by covid. We all understand the pressure that the NHS and the Department of Health and Social Care are under. I also understand the pressure that Ministers must be under, but I hope that the Minister will commit, like the last Minister, to taking forward this issue quickly to ensure that the necessary change happens. In January, I asked if pain during hysteroscopy could be included on the agenda of the women’s health taskforce of England. I was told that the taskforce would be open to it, but then came covid. So can the Minister tell me whether the taskforce has met since January? Has it discussed the issue of suffering during hysteroscopy? If not, will she commit to including it when the taskforce next meets?

Also in January, I followed up the most fundamental changes that I think we need to see. The NHS is currently actively encouraging hospitals to perform hysteroscopies as outpatient procedures, with no possibility of a general anaesthetic or other sedation, through the ironically named NHS best practice tariff. Due to the tariff, an NHS manager’s trust will lose money if it provides a general anaesthetic. I have raised the problem of the best practice tariff several times now. Last year, I sent submissions to the utterly opaque and unaccountable consultation conducted by NHS Improvement—also ironic. Like many women of the campaign, I did not even receive a proper response. That is simply a disgrace. Women must not be ignored. We must see the change we seek.

In my last debate in December 2018, I had four straightforward asks. Sadly, they are still relevant today. I want to see: better information to enable informed consent; improved training, especially on the risk factors and forms of pain relief that doctors are trained to offer; every trust properly funded for the most effective and necessary forms of anaesthetic appropriate to hysteroscopy patients; and, finally, permanent removal of the perverse financial incentive that puts more women at risk of trauma. I hope the Minister will tell us about what action the Government might take on each of those.

Every time I have raised the experiences of the many women who have suffered as a result of hysteroscopy, I have had a genuinely sympathetic response. I genuinely believed that the former Minister, the hon. Member for Thurrock (Jackie Doyle-Price), was taking forward our case within Government, but the work she started did not seem to be allowed to come to fruition. I have to ask why.

If women’s health, informed consent and patient safety are genuine priorities for the Government, I hope to leave today with genuine optimism and renewed confidence that, with the new Minister, our campaign will finally have its success. We cannot be satisfied with sympathy—it is not enough. We need action. The Government must finally bring this sorry state of affairs to a conclusion so that women can be assured that, if they need a hysteroscopy on the NHS, they will be in safe, caring and sensitive hands.

[The Minister for Patient Safety, Mental Health and Suicide Prevention (Ms Nadine Dorries)]

Wow. That was certainly a moving Adjournment speech. I thank the hon. Member, who knows she has my respect. We have been here together for many years, and I have to say that I am truly moved—more than moved—by the accounts of Rebecca, Vidya and Alison. Those stories are incredibly impactful because we know they are real and because, as women, we understand exactly what they are relaying in their experiences in a way that—I am sorry—chaps just do not.

The hon. Member referred to being here eight times. I think I have some good news for her in my response, and that is because she has brought this issue back here eight times. What I am about to say is in no small part due to her persistence. We all know that, in this place, very little happens overnight. The only way we achieve change is by doggedly continuing to push until something happens. I think she will be pleased with what I am about to tell her, but there is also something we will need her and the campaign to do to continue the momentum.

I thank the hon. Member for her continued campaigning, and I am delighted to respond to the debate. A hysteroscopy can be an essential tool in the diagnosis and treatment of conditions. What she referred to in, I think, Rebecca’s experience was a biopsy that is taken to look at tissues, for various reasons. Hysteroscopies are most important in investigating unexplained and distressing problems—they are a timely diagnosis tool—and can be used as a process for dilation and curettage. There are many reasons why women need them.

I am almost loth to read out these words—the hon. Member can tell I am going off script here—but the answer always is, “It’s a very quick procedure, it takes 10 to 15 minutes. If someone is in pain, 15 minutes is a very long time. Who would want to be in labour for 15 minutes? It is a long, long time.

I am almost tempted to say, “Shall we put our hands up to show who in here has been through a hysteroscopy?”, but maybe it is not appropriate for me to say that. I think we all can understand what the experiences are like. Patient experience is significantly varied, so there will be patients who say they did not feel anything and there will be patients who have stories such as those of the people the hon. Member has spoken to.

The NHS does not collect data on the number of women who experience pain— surprise, surprise—during hysteroscopy. However, I am aware that the Campaign Against Painful Hysteroscopy estimates that between 5% and 25% of hysteroscopy patients have reported pain, and 25% is a considerable number. It is essential that women who are offered a hysteroscopy are given the information that they need to make that informed decision, which must include information about potential pain, options for pain management and alternative procedures that are available, such as a general anaesthetic.

I will address the points the hon. Member made regarding whether women are being offered appropriate pain relief and her concern that the national tariff—I completely agree with her here—creates an incentive for hysteroscopies to be carried out as an out-patient, without appropriate pain relief for those 25% of women. I will talk about three components to ensuring that women receive the care they deserve: evidence-based clinical guidelines, embedding the patient voice and monitoring implementation.

To minimise pain and promote best practice in hysteroscopy, it is essential that clinicians have access to guidelines. The Royal College of Obstetricians and Gynaecologists currently has a guideline, produced in 2011, which provides clinicians with evidence-based information regarding out-patient hysteroscopy. The guideline has an explicit focus on minimising pain and optimising the woman’s experience. It makes specific recommendations on practices that help to reduce pain.

I am told that the RCOG is now developing a second edition of those guidelines to ensure that the recommendations are based on the most up-to-date and robust evidence base. It is being developed jointly with the British Society for Gynaecological Endoscopy, and patient groups are represented on RCOG’s guidelines committee and the development group. Furthermore, a statement from the British Society for Gynaecological Endoscopy, which was published on RCOG’s website in 2018, also emphasises the importance of offering women from the outset the choice of having the procedure performed as a day-case procedure under general or regional anaesthetic as an alternative to an out-patient setting.

Alongside clinical guidance, I note the importance of patients’ voices, which are critical at every stage of the treatment pathway. Decisions on any treatment, including out-patient hysteroscopy with its benefits and risks, should always be discussed as part of the shared decision making between the clinician and patient. I understand that since the last parliamentary debate on this subject in December 2018, the NHS website, as the hon. Member noted, has been updated. I thank her for pointing it out and enabling that to happen. The website has been updated and RCOG has published a patient information leaflet regarding the procedure.

NHS England recommends that, as part of good practice, the Royal College of Obstetricians and Gynaecologists’ patient information leaflet, published in 2018, is provided to patients in advance, to assist with obtaining informed consent for the procedure. I imagine by that they mean that it is sent out with the appointment for the procedure or handed out at the clinic.

The patient information leaflet contains a lot of helpful information for patients. It explains what the procedure is and what is involved, what the patient should do beforehand and the questions they should ask health care professionals, the risks and alternatives, after-effects and what will happen following the procedure. The leaflet also recommends that patients take pain relief one to two hours before the procedure. After a hysteroscopy, I encourage any woman to read these valuable resources, along with the additional resources provided by their clinician. First, before the procedure, women must be able to speak to their doctor or nurse about what to expect and about pain relief options, including local or general anaesthetic, but, as we know and as the Cumberlege report has recently shown us, women’s voices are very often not listened to.

[Ms Brown]

I just point out that Rebecca turned up last week to an appointment, and there was no information. She did not even know that she was having a hysteroscopy. That was last week.

[Ms Dorries]

That is distressing to hear.

Women should also be advised that the procedure can be stopped at any time— but, although they are aware of that, that is an incredibly difficult decision to make. When we are in pain, we do not think rationally. It is important to put this on the record as women must be informed of their rights and have their voices heard. Finally, after the procedure, if the woman believes that there have been issues with the treatment that should be raised with the trust.

I want to talk about progress. NHS England advises that progress is being made through the implementation of clinical guidance. Within that, commissioners, and providers should advise service user feedback to be monitored to identify where the guidance is not being followed. As the hon. Member may be aware, women’s health is a personal priority of mine, and I have been looking at improving the experiences of women in the healthcare system since I arrived in the Department. As I recently set out in my statement to the House on the Independent Medicines and Medical Devices Safety Review, we cannot accept the status quo whereby it takes women so long to have their voices heard and for their concerns to be taken seriously. Whether we are talking about the Shipman or Paterson inquiries or the Cumberlege review or another maternity incident, it is sobering to reflect on the amount of inquiries that we have taking place that are about women-only issues. As I work with the team to evaluate every recommendation and every aspect of the Cumberlege review, I want to assure the hon. Member and the House that it remains an absolute priority of mine to tackle these issues.

I understand that the hon. Member has ongoing concerns with the best practice tariff. The aim of the best practice tariff is to encourage procedures in an out-patient setting where clinically appropriate. Out-patient procedures provide the patient with a quicker recovery, as well as allowing them to recuperate at home. I understand that NHS England and NHS Improvement will shortly be engaging with the sector on policy proposals for the 2021-22 national tariff. The tariff engagement document due for October publication will lay out NHS England and NHS Improvement’s initial proposals for the 2021-22 national tariff and will be followed by a statutory consultation. I understand, drawing on the momentum created by changes in the payments system this year due to covid-19, NHS England and NHS Improvement expect to propose an accelerated shift towards the use of a blended payment approach. This proposal would include the majority of services providing hysteroscopy. Blended payment would not differentiate between in-patient and out-patient procedures and, as such, the out-patient procedure’s best practice tariff would no longer be necessary. NHS England and NHS Improvement are currently planning to propose the removal of the best practice tariff from April 2021.

I hope the hon. Member will be pleased to hear this update, and I encourage her and patient groups to comment and contribute to NHS England and NHS Improvement’s proposals both in the tariff engagement document and the subsequent statutory consultation. I myself will be contributing to that consultation.

Once again, I thank the hon. Member for raising this important matter for discussion. She raised the issue of what was the women’s taskforce. I am not aware of any work that has taken place so far on hysteroscopies, but I will look into that. What I will say is that we have established something called the women’s health agenda, which has met this year. Sadly, it had to be stopped because of covid. We are already looking at restarting that agenda now and hysteroscopies will very definitely be on the table, as with all women’s procedures, when we are discussing the women’s health agenda. I really feel strongly that there is more we can do to ensure that we empower women to talk about their health, and I hope that we enjoy better outcomes as a result. Women are not listened to. They are not listened to in so many areas within health as a whole, and we have to change that. We have to ensure that a woman’s voice is heard throughout all the settings in the NHS.