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Despite being regarded as the gold standard, outpatient hysteroscopy (OPH) is associated with inconsistent outcomes and pain, while the clinical, organisational, and personal determinants shaping patient-centred experience remain poorly characterised. This study aimed to harness the authenticity and richness of naturally occurring online qualitative data to explore the clinical, organisational, and personal factors that shape women’s hysteroscopy experiences, offering vital insights for service improvement. The study found that five themes captured women’s specific hysteroscopy experiences: (1) Contingent Consent, (2) Unacknowledged Vulnerability, (3) Analgesia Roulette, (4) Gynaecological Pain Gaslighting, and (5) Gendered Pain Gap. These themes delineate a hysteroscopy pathway where consent is shaped by limited choices and misinformation, vulnerability is heightened by procedural exposure, pain relief is inconsistently applied, women's suffering is routinely dismissed, and gender biases reinforce unequal standards of care. This study identifies clinical blind-spots that contribute to perceptions of systemic neglect in women’s gynaecological health care, evidenced by inconsistent pain management, inadequate consent, and gendered biases in OPH. These findings present an opportunity to inform structural reforms that advance equitable, patient-centred gynaecological care and improve clinical accountability. Further reading on the hub: Painful hysteroscopy Community thread My experience of an outpatient hysteroscopy procedure Preventable negative hysteroscopy experience

This is Patient Safety Learning’s submission to the consultation by the Royal College of Obstetricians and Gynaecologists seeking views on a draft Green-top Guideline on outpatient hysteroscopy. The aim of this guideline is to provide clinicians with up to date, evidence-based information regarding outpatient hysteroscopy, with particular reference to minimising pain and optimising the patient experience. The consultation is now closed. Click on the attachment below to read the full consultation response. Further reading Hysteroscopy: 6 calls for action to prevent avoidable harm Painful hysteroscopy - Patient stories Through the hysteroscope: Reflections of a gynaecologist

The following account has been shared with Patient Safety Learning anonymously. We’d like to thank the patient for to sharing their experience to help raise awareness of the patient safety issues surrounding outpatient hysteroscopy care. I recently had a hysteroscopy. I was put onto the urgent 2-week wait for gynaecology after some suspicious pelvic and trans-vaginal scans. I am 53, peri-menopausal, and had one vaginal childbirth aged 23. I received no information on the procedure beforehand, just a brief phone call from the clinic to say it would be similar to a smear test, followed by the appointment letter. I researched the procedure myself using the NHS website and took the advised paracetamol/ibuprofen before arrival. On the day I wasn't asked to sign any consent form or the like. I just had to give a urine sample on arrival. After a long wait in reception I was called into a small anteroom with a strange cut-out tilting chair with a bucket underneath. I know I was anxious, but in my high alert state it seemed a very alarming set up. After explaining that I have panic attacks, and worried that this environment could be a trigger, my husband came into the room with me (otherwise I think I'd have ran back out again). They gave me a sheet to wrap around my naked bottom half, no gown with a fastening was available. I did not receive any pain relief or anaesthesia. I was really frightened as I saw the hysteroscope and thought how on earth is that going to get through my cervix and into my uterus! I like to think that I've a good pain threshold; but this was like nothing I've ever experienced. I felt the hysteroscope break through my cervix (this made me cry out in pain), and then saline was pumped into my uterus and that was extremely unpleasant. I was deep breathing to try to control myself but I couldn't stop crying and shaking with the shock of it all. I felt such distress that I couldn't speak. It was a terrible deep searing/dragging pain. The nurses were lovely and held my hand while my husband held the other, but I have to say that it was the most frightening experience I've ever been through. I looked up at my husband who was comforting me and I could see tears in his eyes too. The doctor said that all appeared ok, but took some biopsies just to double check. That cutting into my womb hurt a great deal. They then put in a Mirena coil which I had agreed to just before the procedure started, as the doctor said it would help alleviate my heavy periods and thickened womb lining. No one said that I may experience such intense pain during the hysteroscopy, just likely some period type pain. This comparison is not accurate at all. After the procedure I was asked to get dressed. My husband helped me out of the room and I sat down in the reception area trying to hide my distress from the other people waiting in there. I eventually felt able to walk back to the car and my husband drove me home. I have to say that I've been left feeling horrible after all this and I can’t stop thinking about it. I will never undergo a hysteroscopy procedure in this way again. I’m also already very frightened about when the Mirena coil will need to be removed… and that’s 4 or 5 years in the future. The fear of any future internal procedures is now very real, and I find this sad as I’ve never had any concerns about undergoing these in the past This hysteroscopy is such a brutal outpatient procedure and I can't believe that there was no pain relief or anaesthesia offered. I’m still cramping and bleeding and I feel a bit of a wreck. I felt I needed to get my hysteroscopy experience written down to try help me make sense of it, whilst wondering if this is the norm? I’m so confused if it is. I felt embarrassed by my crying and shaking… but it was shockingly painful. It's also left me feeling upset that this may be happening to other women who are already worried about their health and need to know if there’s anything wrong internally; and, like me, believe that there’s no option other than having to go through this ordeal. This is just my personal experience and I do appreciate that there may be other women who have had a different experience to mine. Even so, regardless of any data collected about this procedure, I find it unacceptable for any woman to be expected to bear this terrible pain and trauma. Further reading on the hub: Hysteroscopy: 6 calls for action to prevent avoidable harm The normalisation of women’s pain What is your experience of hysteroscopy? Share and read other accounts in our Painful hysteroscopy community thread.

This month, we’ve been looking back over 2020 and highlighting some of the key areas of health and care that Patient Safety Learning has worked in this year. First, Chief Executive, Helen Hughes, gave an overview, detailing some of the main ways we’ve been achieving our aims as an organisation. Following that, we looked at the impact of the COVID-19 pandemic on patient safety, and, earlier this week, we focused on advice and support for people living with Long COVID. In this blog, Patient Safety Learning reflect on the work we’ve been doing to highlight serious patient safety concerns relating to hysteroscopy procedures in the NHS and how we’ve been making the case for change. As an additional option to the text below, you might like to watch the following video from Stephanie O'Donohue, Content and Engagement Manager of Patient Safety Learning's the hub: Sharing patients’ experiences on the hub In February this year, we heard from the Campaign Against Painful Hysteroscopy (CAPH) about the high numbers of women experiencing painful hysteroscopies. This prompted us to start a new Community discussion on our patient safety platform, the hub, titled ‘Painful hysteroscopy’, asking members to share their experiences with us. This has, by far, been the most popular discussion on the hub. To date, there have been close to 100 comments made, over 30 members have contributed to the discussion, and the conversation itself has received nearly 6,000 page views, with people viewing the discussion daily. Engaging with patients, clinicians, researchers and leaders Through our contact with CAPH and hearing from patients, clinicians and researchers on the hub, we’ve identified the main patient safety issues to be around consent, access to pain relief and implementation of guidance. Since identifying these issues, we have written to key political stakeholders, including Nadine Dorries MP, Minister for Patient Safety, Suicide Prevention and Mental Health, and Jeremy Hunt MP, Chair of the Health and Social Care Select Committee. More recently, we have made a request for data from the National Reporting and Learning System (the central NHS database for patient safety incident reports) to understand whether the experiences we are hearing about are being accurately captured. We believe patients’ experiences of hysteroscopy should be proactively gathered and used to evidence and inform improvements. Looking forward In 2021, we will continue calling for patients’ experiences of hysteroscopy, and their concerns about this procedure, to be heard and responded to. We want to see systems put in place to support patient safety, and evidence-based conversations occurring between clinicians and patients before procedures take place. These conversations should aim to ensure patients are well-informed of the benefits, risks and alternatives of the procedure, as well as what impact it will have on them if they choose not to proceed. You can read more about the action we believe is needed to address the patient safety issues around painful hysteroscopies.

This study, published by the International Institute of Gynaecology and Obstetrics, evaluates the safety and efficacy of flushing the cervical canal and the uterine cavity with local anaesthetic in order to reduce the pain felt by patients during office hysteroscopy.

One woman's account, published by Care Opinion, of her traumatic experience of having a hysteroscopy. "At no point was any pain relief, sedation or anaesthetic offered to me or discussed at all."

Patients are not always given a choice between an outpatient hysteroscopy and a general anaesthetic. Radio's 4's Women's Hour discusses the issue of inadequate pain relief for hysteroscopies. The discussion includes one patient's story of the trauma she suffered and a response from a consultant in reproductive health. The interview was published on the Hysteroscopy Action website, please follow the link below to listen. 

This patient story essay was produced by the Campaign against painful hysteroscopy to highlight the extreme levels of pain many women experience when undergoing the procedure. The campaign calls for an end to inadequate pain relief for hysteroscopies.

Dr Richard Harrison is a pain researcher employed at the University of Reading and affiliated with the School of Psychology and Clinical Language Sciences (SPCLS) and Centre for Integrative Neuroscience and Neurodynamics (CINN). His research focuses predominately on pain, examining psychological processes underlying how pain is processed, as well as individual differences in the ability to modulate (or control) the experience of pain. In this blog, Richard reflects on his recent research on pain experience and assessment during hysteroscopy procedures, published recently in the British Journal of Anaesthesia. "The dangers of advertising hysteroscopy as a mildly painful procedure are many. Firstly, this stands to put women off engaging with a very useful diagnostic test for the identification of serious medical conditions, such as ovarian cancer or endometriosis. But secondly, it is highly plausible that the resulting prediction error stands to make the experience even more painful than if patients were appropriately warned."

Hysteroscopy is a procedure used as a diagnostic tool, to identify the cause of common problems such as abnormal bleeding, unexplained pain or unusually heavy periods in women. It involves a long, thin tube being passed into the womb, often with little or no anaesthesia. In recent years, there has been an increased focus on these procedures being performed within outpatient services. The availability of pain relief is much reduced in these settings. There are financial incentives in place to support this move to day surgery.[1] Reflecting on activity to date, Patient Safety Learning discusses the important role that consent, patient engagement and collaborative action is playing in highlighting a serious patient safety concern and in driving the change needed for safe hysteroscopy. Patients, campaign groups and politicians have raised serious safety concerns around outpatient hysteroscopy for several years, arguing that women are suffering avoidably. Some women have described how the lack of forewarning, coupled with the trauma of the experience itself, left them feeling that both their body and trust had been violated. Many received little or no pain relief and were not given the information needed to make an informed choice about their own care and their own bodies. Those voices need to be heard and hysteroscopy processes reviewed accordingly to ensure the safest delivery of care, reflective of lived experience. Helen Hughes, Chief Executive of Patient Safety Learning, says: “There are clear diagnostic benefits of having a hysteroscopy, and a small number of women may not feel any pain. This is not, however, a good enough reason to dismiss the significant number of women who have reported unbearable levels of pain when undergoing the procedure as an outpatient. These experiences warrant urgent attention if future harm is to be prevented.” Patient Safety Learning supports the call for: National guidance for outpatient hysteroscopy to be consistently applied Women to be provided with information and advice to inform their consent Women to be offered and provided with pain relief Significant pain to be considered an adverse event and recorded and reported as such Research to assess the scale of unsafe care and pain, the extent to which women are suffering, the implementation of national guidelines and the appropriateness of financial incentives without proper safeguards. Baroness Cumberlege reported in her recent review[2] that patients “should not have to join the dots of patient safety”. Patient Safety Learning considers that this is another example where women’s rights to safe services are being compromised, and seeks an urgent response from healthcare leaders to address this significant patient safety issue. Pain during hysteroscopy Recent research, published in the British Journal of Anaesthesia, shows that 17.6% of women rate their pain during hysteroscopy as greater than 7/10, and only 7.8% report no pain at all[3]. Another study estimates the number of women reporting intense or intolerable pain to be much higher at around 25%.[4] This data is supported by the countless testimonials from women who say they have been left feeling in shock, violated and traumatised following very high levels of pain.[5] “I began to hyperventilate with the pain, I was sweating and shaking and I believe I had gone into shock.”[6] Despite the evidence that women can experience unbearable pain, in surveying patients, the Campaign Against Painful Hysteroscopy (CAPH) found that the risk of significant pain is very rarely communicated to women beforehand. Instead, the advice given is usually to take over the counter painkillers and that any discomfort should be minimal. “I was reassured that for most women it is just like period pain and just asked to take paracetamol. Three hours later I found myself screaming from my guts, to stop! Please stop!”[7] Is there informed consent? The principle of consent is an important part of medical ethics and international human rights law. Failure to obtain informed consent can lead to avoidable patient harm, as highlighted by Nadine Montgomery’s story.[8] This led to a landmark ruling, stating that doctors must ensure patients are aware of any risks involved in a proposed treatment, and of reasonable alternatives. The NHS defines informed consent as: The person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what will happen if treatment does not go ahead. There are a growing number of women who were not given sufficient information and therefore do not feel they gave informed consent before their hysteroscopy procedure. Many were not told about the risk of high levels of pain or given an opportunity to discuss the pros and cons of all the available options (such as general anaesthetic or sedation). “I am a midwife myself and spoke to the consultant explaining how anxious I felt regarding the procedure, as I had had a very painful / difficult removal of Mirena coil previously and been told I had a cervical stenosis. I asked could I have sedation and was declined saying it would only be ‘brief discomfort’ and to just take painkillers a couple of hours before”.[9] Speaking to the House of Commons in September, Lyn Brown MP, called for urgent action to improve hysteroscopy processes and patient safety, highlighting the fact that this issue had been brought to Parliament eight times in total. In her statement, she read aloud the words of patients, illustrating the physical and psychological trauma experienced by many and the impact of not being fully informed. One account came from Rebecca, who was given no information before her appointment, received no warnings about severe pain and was not offered sedation. “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.”[10] The CAPH has surveyed many women who have reported experiences to similar Rebecca’s.[11] Particularly alarming is that we are also hearing of women whose procedures were not paused to re-obtain consent, despite clear expressions of distress and extreme pain. The responses collected by the CAPH and patient forums[12] also highlight the damaging impact that these traumatic experiences can have on a patient’s relationship with the healthcare system. A lack of forewarning of the risks, or information about the choices available, have left some mistrustful and fearful of accessing healthcare services again. Many have described feeling violated. Some have reported long-lasting trauma and have been diagnosed with Post Traumatic Stress Disorder (PTSD). “I would dream that I was back in hospital having the procedure and racked with pain. Some nights I would wake up screaming, sweating and with my heart racing. Then, during the day, I started getting flashbacks of the examination.” [13] Listening to and engaging with patients There is clearly a huge disconnect between the information given beforehand and the actual lived experience of many women who have an outpatient hysteroscopy. Research indicates there is also a substantial disconnect between patient and clinician understanding of the pain experienced during the procedure, and that clinician perception of a patient’s pain during hysteroscopy is not a reliable assessment method. [14] Listening to patients is therefore vital to understanding what is happening and how these gaps can be bridged to prevent future harm. The CAPH has been challenging the processes around hysteroscopy procedures for several years. They have engaged with hundreds of patients to understand the extent of the issue and to identify common themes. In October they wrote to Matt Hancock MP, Secretary of State for Health and Social Care and Nadine Dorries MP, Minister for Patient Safety, Suicide Prevention and Mental Health. [15] In their letter, they used both empirical data and the personal stories of women to illustrate the prevalence and seriousness of the issue. Lyn Brown has also retold the stories of women to parliamentary peers, calling for urgent action in response and yet the issues raised have still not been addressed. The Cumberlege Review illustrates the devastating and long-lasting consequences that can occur when patients are not listened to. We know the dismissal of patient voices provides space for harm to persist and causes further psychological distress to those involved. With growing concerns and evidence of harm, it is imperative that hysteroscopy patients are actively encouraged to provide feedback and that they are listened to at all stages of the process. Current guidance The CAPH have been working with the Royal College of Obstetricians and Gynaecologists (RCOG) and others to develop and promote good practice guidance.[16] Collaborative approaches are key to resolving patient safety issues and Patient Safety Learning welcomes and supports this work. However, it is clear that guidance is not being consistently adhered to, leaving women susceptible to alarmingly varied standards of hysteroscopy care. This raises important questions. Why are good practice guidelines that already exist not being effectively communicated to clinicians and patients, and implemented? How are examples of excellence being shared between clinical colleagues so that all patients can benefit and receive safer care? What are the barriers? Finding the answers to these questions will be key to improving hysteroscopy processes for all women. Currently, the NHS Best Practice Tariff financially incentivises hysteroscopy procedures being performed under outpatient services. Patient Safety Learning believes this framework has created unintended consequence of avoidable harm and requires urgent review. The safety of patients must be prioritised.[17] Responding to concerns about this in a recent House of Commons debate, Nadine Dorries indicated that NHS England and NHS Improvement will shortly be looking at policy proposals for the 2021-22 national tariff, which would remove this incentive.[18] What action is needed? So, if we know that there is a significant problem, why is it not being addressed? Why are NHS leaders not listening to women, to MPs or to clinicians? Why have effective clinical procedures not been applied safely to thousands of women over many years? Patient Safety Learning believes that the reasons for this are well reflected in the Cumberledge Review. We eagerly await the government’s response to its recommendations, but we must act urgently to address painful hysteroscopies. Both the CAPH and Lyn Brown have made several recommendations to the government for improving hysteroscopy processes.[19-20] Recently, pain researcher and co-author of Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy, Dr Richard Harrison, has highlighted his own concerns: "The dangers of advertising hysteroscopy as a mildly painful procedure are many. Firstly, this stands to put women off engaging with a very useful diagnostic test for the identification of serious medical conditions, such as ovarian cancer or endometriosis. But secondly, it is highly plausible that the resulting prediction error stands to make the experience even more painful than if patients were appropriately warned."[21] On social media, clinicians are also questioning why women are not warned of the risk of pain involved in gynaecological procedures, and why medical education describes these procedures as being only mildly discomforting for women.[22] This touches on a much wider debate around gender pain bias in healthcare[23]. Drawing on all these insights and recommendations, Patient Safety Learning believes that we need to consider the following: Designing and delivering for patient safety o National guidance for outpatient hysteroscopy should be consistently applied o There should be a clear requirement to prevent unsafe care and painful hysteroscopies; this should be embedded in commissioning guidance o There should be the removal of perverse financial incentives o Women should be offered and provided with pain relief o Patient feedback needs to be routinely collected and made publicly available in order to inform the delivery of safer care and respond appropriately in the event of harm o Significant pain should be considered an adverse event, being recorded, reported and responded to appropriately o Research should be undertaken to assess the scale of unsafe care and pain, the extent to which women are suffering, the implementation of national guidelines and the appropriateness of financial incentives and proper safeguards. Patient information, advice, and consent o Patient information should include the risk of severe pain and the clinical factors that may make someone more susceptible (see RCOG patient leaflet developed with CAPH)[24] o Patients should be made aware of all available choices for pain management and supported in weighing up the risks and benefits o It must be clearly communicated to patients that they can stop the procedure at any point o Patients should be encouraged to bring someone with them in case they require physical or psychological support following the procedure. Staff competence and training o Only trained staff should undertake hysteroscopies o Hysteroscopy staff should receive standardised and regulated training. This should include the risks of severe pain, clinical factors that make someone more susceptible, the limitations of clinician perception to assess pain, the importance of listening to women throughout and the application of consent guidelines. How can you help? From patients to politicians, clinicians to researchers, charities to campaigners, there are many people who are working tirelessly to improve hysteroscopy processes. Patient Safety Learning want to help ‘join the dots’ and bring those insights together to work towards safer care. We will support and promote this work, using our influence to promote the action that is needed. Raise awareness We would encourage readers to share this blog widely on social media platforms to help raise awareness of the safety issues surrounding hysteroscopy and to add weight and urgency to the call for action. #share4safety The content of this blog or the CAPH open letter can also be used as a letter template for anyone wishing to call for action from their local MP. They also provide a useful briefing tool, that can be used to inform journalists, decision makers and clinical leaders of the situation. You can find out how to contact your MP here. Join the conversation Are you a healthcare worker with insights to share on this topic? Are you a patient who has had a hysteroscopy? Perhaps you are a researcher or have a different perspective to add? We are capturing insights and suggestions for action on a new area of the hub, our free learning platform for patient safety. You can join the conversation here or get in touch with us directly by emailing [email protected]. Stay connected Join the Patient Safety Learning community and sign up to the hub for free. As a member, you’ll be able to join the conversation, get early access to events and receive regular news and updates about patient and staff safety. Follow us on: Twitter @ptsafetylearn Facebook Patient Safety Learning LinkedIn Patient Safety Learning References [1] NHS England and NHS Improvement, 2019/20 National Tariff Payment System – A consultation notice: Annex DtD Guidance on best practice tariffs, (2019). [2] Baroness Cumberlege, J. The Independent Medicines and Medical Devices Review. 2020. [3] Harrison, R, Kuteesa, W, Kapila, A. Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy. Journal of Anaesthesia. 2020. [4] Jansen FW, Vredevoogd, CB, Van Ulzen K, et al. Complications of hysteroscopy: a prospective, multicenter study. Obstet Gynecol. 2000; 96: 266-270. [5] Campaign Against Painful Hysteroscopy: Patient Stories. 2018. [6] Care Opinion forum, Painful Hysteroscopy. 2017. [7] Erminia. "I didn't sleep for 5 nights after this happened". Care Opinion 2018. [8] Montgomery N. Nadine’s Story: Consent. NHS Resolution 2019. [9] Campaign Against Painful Hysteroscopy. Open Letter to Matt Hancock MP and Nadine Dorries MP. [10] Hansard, House of Commons, NHS Hysteroscopy Treatment. 2020. [11] Campaign Against Painful Hysteroscopy: Patient Stories,. 2018. [12] Patient Safety Learning’s the hub, Community Forum, Painful Hysteroscopy. 2020. [13] Daily Mail, Grandmother-of-three, 67, was left with PTSD after routine NHS medical check caused pain worse than childbirth... and she’s one of thousands of women. 2020. [14] Harrison, R, Kuteesa, W, Kapila, A. Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy. Journal of Anaesthesia. 2020. [15] Campaign Against Painful Hysteroscopy. Open Letter to Matt Hancock MP and Nadine Dorries MP. [16] Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018. [17] NHS England and NHS Improvement, 2019/20 National Tariff Payment System – A consultation notice: Annex DtD Guidance on best practice tariffs. 2019. [18] Hansard, House of Commons, NHS Hysteroscopy Treatment. 2020. [19] Campaign Against Painful Hysteroscopy. Open Letter to Matt Hancock MP and Nadine Dorries MP. 2020. [20] Hansard. NHS Hysteroscopy Treatment. House of Commons 2020. [21] Harrison, R. "Pain-free hysteroscopy". Richard Harrison's website. 2020. [22] Twitter thread [23] Billick J. Pain Bias: The health inequality rarely discussed. BBC Future. 2018. [24] Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018.

The Campaign Against Painful Hysteroscopy is a campaign group raising awareness of the safety flaws that exist within the processes surrounding hysteroscopy procedures for women.  On 20 October 2020, they wrote to Matt Hancock MP, Secretary of State for Health and Social Care and Nadine Dorries MP, Minister for Patient Safety, Suicide Prevention and Mental Health. In their letter they used both empirical data and the personal stories of women to illustrate the prevalence and seriousness of the issue.  Dear Matt Hancock and Nadine Dorries, We ask the DHSC to make provision for all NHS Trusts to work with the RCoA and RCOG to establish safely monitored IV ‘conscious’ sedation with analgesia as a treatment option for hysteroscopy+/-biopsy. Currently, Trusts put almost all patients through Trial by Outpatient Hysteroscopy and only those patients who fail (usually due to acute pain) are allowed a GA. There is no routine option of IV sedation with analgesia or spinal anaesthesia. We ask too that NHS Trusts give all hysteroscopy patients upfront a fully informed ‘Montgomery’/ GMC CHOICE of: o no anaesthetic o LA / regional / epidural o IV sedation with analgesia o GA The choice should be made after thorough discussion with the patient about her medical history, risk factors and preferences. WHAT IS HYSTEROSCOPY? Hysteroscopy is endoscopy of the womb. Like colonoscopy, it’s used to detect cancer, pre-cancer and benign abnormalities. Hysteroscopy done in outpatients with miniature surgical tools enables the removal of polyps and small fibroids without an incision or general anaesthetic [GA]. Here the similarity with colonoscopy ends. For NHS colonoscopy, the patient is routinely offered a CHOICE of Entonox or IV sedation with analgesia. Some patients request and receive GA. The risk of perforation (and potential death) is less when performed on a patient under IV ‘conscious’ sedation than under GA. The NHS therefore wisely prefers colonoscopy under ‘conscious’ sedation to GA. NHS colonoscopy services aim to protect patients from severe pain. Apart from assuring basic human respect and dignity, the NHS recognises that people traumatised by a severely painful colonoscopy may delay or not return for vital cancer diagnosis or treatment. UPDATE FROM THE CAMPAIGN AGAINST PAINFUL HYSTEROSCOPY [CAPH] Severely painful outpatient hysteroscopy is the next medical scandal after vaginal mesh. Cheap, quick and easy-to-use NHS vaginal mesh kits helped the majority of patients, and saved precious time and resources. Cheap, quick and easy-ish NHS outpatient hysteroscopy [OPH] without anaesthesia/sedation causes severe pain/distress/trauma to approx. 25% patients and saves precious time and resources. Like the vaginal mesh campaigners, hysteroscopy patients who’d been seriously harmed by a flawed medical policy started asking questions. Hysteroscopists assured us that our excruciating and unforgettable pain was very ‘unusual’ and affected only 2% to 5% of patients. This statistic didn’t fit with patients’ observation of OPH clinics. So these ‘unusual’ women started googling, then exchanging stories via social media. Soon they formed into Facebook and Twitter groups. Involved politicians. Interrogated health authorities. Looked for medical explanations. Approached professional colleges and societies. Sought out empathetic and intelligent doctors. Studied the law of informed medical choice and consent. By 2014 a campaign was born, greatly assisted by Lyn Brown, MP (Lab, West Ham) who was prepared to stick her neck out for her constituents and for other women who’d been traumatised and dismissed as ‘incorrect’ in their perception of hysteroscopy pain. These women were clearly of the ‘wrong demographic’! Too anxious, had too narrow cervical canals, too tilted wombs, were too emotionally labile, too black, too white, too rich, too poor, too educated, too urban... By early 2020 the Campaign Against Hysteroscopy had amassed a google survey of 1,000+ hideous, predominantly NHS, stories. We sought stories of specifically painful hysteroscopy since our aim was to identify any common features in patients’ medical histories or the operating teams’ conduct of a painful procedure. We hoped that our findings would aid future patient selection and choice. We gave our results to the Presidents of RCOG and the British Society for Gynaecological Endoscopy. The survey’s free text was shocking: It was barbaric and one of the most painful experiences of my life including vaginal childbirth. I begged them to stop but they wouldn’t. It was like torture It was a terrible experience that I don’t think I will ever forget Just before lockdown, the Health Service Journal published an analysis of our survey [Matt Discombe, HSJ, 2 March 2020] “Around 520 women who attended NHS hospitals in England to undergo hysteroscopies — a procedure which uses narrow telescopes to examine the womb to diagnose the cause of heavy or abnormal bleeding — have told a survey their doctors carried on with their procedures even when they were in severe pain.” We continued our on-going survey, asking about pre/post-menopausal status; vaginal/caesarean delivery/nulliparity; endometriosis/dysmenorrhea/previous traumatic gynae; mental health; hospital information about pain risk; choice of LA/GA/IV sedation; pain-scores at different OPH stages; whether the hysteroscopist stopped if the patient was in pain/distressed; preferred mode of future hysteroscopy, etc. At the end of the survey we asked, “Is there anything else you’d like to tell us?” I was given a brown paper bag to breath into as I hyperventilate with the pain. The male consultant made fun of me. Anaesthetic should be compulsory, I have a high pain threshold but was most painful thing I have ever felt, still feeling traumatised after the event. Staff were appalling. 5 nurses and doctor laughed when they could see I was in terrible pain, shocking The pain after the procedure was finished, was excruciating, body started to go into shock. Ended up in A&E pumped full of morphine and admitted overnight for observation. Never again unless under GA. Ask them if they are in pain rather than asking them about their last holiday whilst their uterus is dilated. I am a midwife myself and spoke to the consultant explaining how anxious I felt regarding the procedure, as I had had a very painful / difficult removal of mirena coil previously and been told I had a cervical stenosis: I asked could I have sedation and was declined saying it would only be “ brief discomfort” and to just take painkillers a couple of hours before At one point that evening I was so confused and in pain, feeling sick and with a high resting heart rate that I nearly called an ambulance. I was alone. Nobody suggested I should have someone at home with me. Felt embarrassed because of yelling (due to the incredibly sharp pain) The doctor and nurse were fine but I was screaming in pain and doctor counted down from 10 to 1 to try to get me to hold on until she could finish it Gas and air made me feel light headed but made absolutely no difference to the pain I experienced. The Cumberlege Review ‘First Do No Harm’ of July 2020 categorised breaches of patient safety into themes. [https://www.immdsreview.org.uk/Report.html] Three of these themes sum up the current harms caused by an over-zealous, blanket NHS policy of reduced-cost OPH: Cumberlege Theme 1, "No-one is listening" – Hysteroscopists lack empathy; they ignore patients’ requests for GA and fail to stop when the patient is in distress. Cumberlege Theme 3, "I was never told" - Hysteroscopists fail to warn patients of the risk of severe pain and don’t tell patients upfront that they have the option of GA. Cumberlege Theme 10, "Collecting what matters" - Hysteroscopists are wilfully blind to Patient Reported Outcomes – they belittle and don’t record the patients’ own short-term, medium-term and long-term outcomes when these cause severe pain and PTSD. CAPH has frequently heard of hysteroscopists telling GPs that a crying patient “tolerated the procedure well”. WHAT IS THE DATA ON HYSTEROSCOPY PAIN? Just as with vaginal mesh, very few gynaecologists have systematically collected pain scores from all their OPH patients. When OPH pain-scores are reported in English journals usually only the median or mean scores are given. Hundreds of members of our Action/Support group were never asked for a pain-score. NHS OPH pain audits obtained by CAPH under the Freedom of Information Act shows that currently 1 in 4 NHS England hysteroscopy outpatients typically suffers severe pain of 7/10 or more. [ www.whatdotheyknow.com - see ‘Outpatient hysteroscopy/biopsy’] The British Society for Gynaecological Endoscopy’s 2019 bespoke 81-hospital survey of 5,000+ hysteroscopy patients from BSGE members’ own NHS clinics reports a mean pain-score of 5.2/10. So clearly it’s not the “mild discomfort” that most patient leaflets claim. Nor is it now feasible to say that severe pain is experienced by only 2-5% of patients. [ www.bsge.org.uk BSGE Ambulatory Care Network Meeting Feb 2020] CAPH has asked for the full range of BSGE members’ OPH pain-scores under FOIA. The British Journal of Anaesthesia this year published a review evaluating patients’ reported pain compared with hysteroscopists’ assessment of OPH pain over 8 years at Royal Berkshire Trust – a good clinic which is barely mentioned in our survey. [Harrison, Salomons 2020]. 17.6% of patients reported severe pain of 7/10 or more, while 7.8% reported no pain. The authors concluded that since patients were likely to experience pain then they should be warned of this. WHAT DOES THE NHS TELL PATIENTS ABOUT HYSTEROSCOPY PAIN? NHS hysteroscopy services appear to follow ex-Cancer Tsar Prof Sean Duffy’s opinion “Overall we think that too much emphasis is put on the issue of pain surrounding outpatient hysteroscopy.” [BMJ. 2001 Jan 6; 322(7277): 47] Patient leaflets almost invariably tell women to expect “mild discomfort”, on a par with moderate period pain. So, without any pre-op assessment the NHS pushes almost all women through Trial by Outpatient Hysteroscopy and reserves GA for those who ‘fail’. The womb endoscopy patient is NOT routinely offered the option of GA. If she asks for one, the request is usually declined – even before the covid-19 pandemic. Thus the vast majority of NHS clinics wilfully ignore the RCOG/BSGE 2018 statement instructing gynaecologists to offer all hysteroscopy patients the choice of GA up-front, and to stop an OPH if the patient is distressed. [https://www.rcog.org.uk/en/guidelines-research-services/guidelines/gtg59/] Yes, there are some excellent, highly skilled and compassionate OPH clinics but, sadly, most put cost-effectiveness before compassion or ‘Montgomery’ informed patient choice, thus denying patients genuine informed consent. Most hospital leaflets tell patients to take over-the-counter meds from home. There is no pre-med in clinic. The woman gets a ‘vocal local’ – hairdresser chit-chat- pioneered in rural Kenya by Marie Stopes. The woman is sometimes held down if distressed and agitated. She may receive potentially painful injections into the cervix as ‘rescue analgesia’. Unfortunately the cervical LA doesn’t anaesthetise the top of the womb, from which the cancer-detecting biopsy is taken. [www.bsge.org.uk Ambulatory Care Network 2020 Keynote Speaker on ‘patchy and unpredictable’ cervical LA] WHAT DOES THE CAMPAIGN AGAINST PAINFUL HYSTEROSCOPY WANT? 1. Every single NHS hospital to use – at the very least – the RCOG patient leaflet (CAPH helped write) which mentions the risk of SEVERE pain outlines clinical risk-factors for severe pain offers patients upfront the option of a GA/IV sedation with analgesia 2. The DHSC and RCOG to work with the Royal College of Anaesthetists to train hysteroscopy teams and establish safe IV conscious sedation with analgesia as a CHOICE available to all womb endoscopy patients. 3. The DHSC to permanently remove any Best Practice Tariff or financial incentive which removes timely access to GA, IV sedation with analgesia or other anaesthetist supported service. 4. A pre-op assessment for all hysteroscopy patients, meaning an end to ‘See & Treat’ clinics, which often coerce women into polyp and fibroid removal without patients having time to consider whether they’d prefer GA/ IV sedation/ regional anaesthesia rather than a local which doesn’t anaesthetise the top of the womb. The current ‘One-Stop’ clinic endangers women who attend the clinic alone and then have to drive or travel home on their own, often in severe pain, bleeding and traumatised. This is unacceptable and must stop. 5. Standardised, regulated, updated high quality training and accreditation for all hysteroscopists together with up to date equipment. Hysteroscopists should be taught to recognise cohorts at high risk of severe pain, develop listening skills and treat women with respect. 6. Full transparency about the financial sponsorship of NHS hysteroscopists’ training by the medical devices industry and the resulting bias towards particular manufacturers’ preferences and cost-effectiveness rather than patient experience. 7. Severe procedural pain to be classed and recorded as a Serious Adverse Event. Yours faithfully, Elaine Falkner (Chair), Pamela Howe (Secretary), Jocelyn Lewis, Lorraine Shilcock, Denise Shafeie, Gill Johnson, Katharine Tylko (on behalf of) The Campaign Against Painful Hysteroscopy www.hysteroscopyaction.org.uk Twitter: @hysteroscopyA Facebook: Campaign Against Painful Hysteroscopy

Women experience varied levels of pain during gynaecological procedures. More research is needed if we want to reduce the risk of severe pain and improve understanding among medical professionals, writes Stephanie O’Donohue in this BMJ opinion piece.

Hysteroscopy is a reliable technique which is highly useful for the evaluation and management of intrauterine pathology. Recently, the widespread nature of in-office procedures without the need for anaesthesia has been requesting validation of practical approach in order to reduce procedure-related pain. In this regard, authors performed a comprehensive review of literature regarding pain management in office hysteroscopic procedures.  The authors conclude: "Accumulating evidence support the use of pharmacological and other pharmacological-free strategies for reducing pain during office hysteroscopy. Nevertheless, future research priorities should aim to identify the recommended approach (or combined approaches) according to the characteristics of the patient and difficulty of the procedure."