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  • Hysteroscopy: 6 calls for action to prevent avoidable harm


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    Summary

    Hysteroscopy is a procedure used as a diagnostic tool to identify the cause of common issues such as abnormal bleeding, unexplained pain or unusually heavy periods. It involves a long, thin tube being passed through the vagina and cervix, into the womb, often with little or no anaesthesia. 

    Studies indicate that some women do not find hysteroscopy procedures painful. However, it is now widely recognised that many women experience severely painful and traumatic hysteroscopies.[1-5] 

    At Patient Safety Learning, we have worked with patients, campaigners, clinicians and researchers to understand the barriers to safe care and call for improvements.[6] We believe that no woman should have to endure extreme pain or trauma when accessing essential healthcare. 

    In this blog we will: 

    • outline the key safety concerns around hysteroscopy procedures
    • summarise recent national discussions highlighting these concerns
    • reflect on the new national guidance
    • outline six calls for action. 

    Content

    Patient safety concerns

    We know that outpatient hysteroscopy is a valuable diagnostic procedure. When patients are given all of the available information, offered appropriate pain relief options and feel treated with respect and dignity, experiences of a hysteroscopy procedure can be good.

    But, as we have heard all too often, in many cases this is not what patients are experiencing and a number of significant safety concerns persist.  

    Risk of severe pain

    There are hundreds of personal accounts from women who have experienced very high levels of pain and associated trauma during and/or following a hysteroscopy procedure[7-9] This is supported by research papers, showing unacceptable percentages of patients scoring their pain as medium-to high.[10][11] In addition, we have heard accounts of longer lasting pain and complications, physical harm and post-traumatic stress disorder following hysteroscopies.[12][13]

    Studies show clinician perception of patient pain is not an accurate measure, tending to underestimate the pain experienced.[14][15] This raises questions about the value of pain and tolerability assessments made by the clinicians undertaking hysteroscopy procedures and the impact this bias has on treatment.

    “After the procedure, Martha understandably felt violated, but sadly that was far from the end of her ordeal. She had burning pain for weeks, mixed with a loss of feeling in her groin. She developed repeated bladder infections and double incontinence, and her muscles started wasting. She had difficulty standing and walking. Eventually, Martha was told that she had post-operative nerve damage. To put the cherry on the cake, I understand that the doctor who did this to Martha recorded her pain score as just one out of 10.”

    Lyn Brown MP speaking in a House of Commons debate

    Absence of informed consent

    It has become clear that many women are not fully informed when consenting to a hysteroscopy procedure. As set out by national guidance, they should be given all of the options available to them beforehand. This should include information outlining the benefits, risks, alternatives and consequences of opting not to proceed with any procedures.[16-18]

    Women are not always being told of the possibility of severe pain or offered the range of pain management options available to them for a hysteroscopy. Many are told to expect mild period-like cramping and to take simple analgesics, such as paracetamol, beforehand.[19][20]

    Lack of guidance to support triage

    Although it is difficult to predict who will experience severe pain during a hysteroscopy, conversations between the patient and the clinician around medical history could help to identify who might be more susceptible. For example, women who have experienced sexual trauma, found gynaecological procedures very painful in the past and those who have not given birth may be more at risk.[21][22]

    There is little available guidance to support clinicians in having these conversations to help patients feel informed of their individual risks of pain.

    Physical and psychological violation

    Women have spoken about feelings of violation during and following their hysteroscopy procedure, particularly where they do not feel they have been adequately prepared and informed beforehand. There are also serious concerns that some women have not had their wishes listened to or acted on when they have asked for the procedure to be stopped. In such cases, the physical and psychological trauma becomes entwined and heightened, as many women feel that both their body and trust has been harmed.

    In addition, many women have described having their pain or concerns dismissed, belittled, or disbelieved, often linking this to misogynistic or paternalistic approaches and language.[23-25]

    Negative impact on future health outcomes

    The loss of trust that comes from feeling uninformed before experiencing high levels of pain during a hysteroscopy, can understandably impact the relationship a patient has with our healthcare system. This has inevitably left some fearful to attend important appointments in future, for example cervical smear screenings.

    The stark reality is that these harmful experiences have potential to negatively impact future diagnoses, treatments and health outcomes.

    Patient Safety Learning has provided an online forum for women to share their experiences of hysteroscopy. This has had over 60,000 views to date, helping amplify the voices of many women who have often been dismissed or left unheard. These testimonies have informed our work on this topic, helping us to understand the key safety concerns and indicating what actions may be needed to prevent future avoidable harm.

    Patient Safety Commissioner and discussions in the House of Commons

    Patient Safety Commissioner’s first 100 days report

    Last year Dr Henrietta Hughes was appointed as the first Patient Safety Commissioner for England. She is an independent champion for patients and seeks to drive improvements in the safety of medicines and medical devices.[26]

    In a recent report reflecting on her first 100 days in post, she highlighted that 6% of the initial correspondence she received related to painful experiences of gynaecological procedures, such as hysteroscopy.[27]

    Although her initial priorities for this year do not include this topic, this is one of the issues on her radar and we look forward to hearing more detail about the concerns raised and how she plans to address these moving forward.

    Discussions in Parliament

    In addition to patients and campaigners raising safety concerns relating to hysteroscopy procedures, this was also the subject of a recent debate in the House of Commons, [28] led by Lyn Brown MP. It was the 10th time she has brought the issue before Parliament.

    In her speech, Lyn Brown noted that a third of women experience very high levels of pain, and drew on the case of ‘Martha’ who was seriously injured during her hysteroscopy.

    She also expressed concern that a proposed target of aiming for 90% of hysteroscopy happening within outpatient rooms, suggested by the Getting It Right First Time programme, could exacerbate the number of cases where patients do not receive appropriate pain relief options.

    Lyn Brown also raised concerns around:

    • The lack of formal data collection by the NHS on cases of painful hysteroscopy.
    • Potentially embedded views among gynaecologists regarding pain and patient experiences of this procedure.
    • Patients who have negative experiences in relation to hysteroscopy being afraid to access important health procedures in future, with a long-term impact on their health.

    This debate was responded to on behalf of the Government by Maria Caulfield MP, Minister for Mental Health and Women’s Health Strategy.

    In her response, Maria Caulfield stated that she would be meeting with patient group, The Campaign Against Painful Hysteroscopy, to discuss the issues further. She also said that she had asked the Women’s Health Ambassador, Dame Lesley Regan, to discuss the issues surrounding hysteroscopies further with the Patient Safety Commissioner for England, Dr Henrietta Hughes.

    The Minister also highlighted the importance of translating the imminent Royal College of Obstetricians and Gynaecologists (RCOG) guidance into clinical practice.

    Maria Caulfield MP

    New guidance

    The new guidance referred to by the Minister was subsequently published by RCOG on 7 February 2023. This good practice paper, Pain relief and informed decision making for outpatient hysteroscopy, has been written for healthcare professionals who are involved in providing outpatient hysteroscopy.[29]

    Patient Safety Learning submitted a response to the consultation on this Paper last year, with the aim of supporting safer hysteroscopy care and improved patient experience.[30]

    Reflections on the new good practice paper

    We welcome the publication of this new paper for healthcare professionals, to help them understand some of the steps they can take to improve hysteroscopy safety.

    We were pleased to see this paper acknowledge that a third of women experience significant pain during hysteroscopy, scoring their pain at 7 out of 10 or higher. There was also a clear effort to include advice around compassionate care before, during and after the procedure. We also welcome the emphasis on the importance of ensuring women have full information beforehand and have been told of all of the available options.

    We do however note the following concerns in relation to the guidance:

    • There are several references made to using simple over-the-counter painkillers beforehand ‘unless there are contraindications’. A contraindication is when a patient has something (such as a symptom or condition) that makes a particular treatment or procedure inadvisable. There is however no guidance around what should be considered a ‘contraindication’ in relation to a hysteroscopy procedure, and how best to triage patients accordingly when it comes to pain relief options and individual risk of severe pain.
    • On several occasions it refers to patients experiencing period-like pain, or a variant of this term. This is quite an imprecise description that some women may not find helpful in making an informed decision about their care, as patients experience period pain very differently.

    Asked for their thoughts on the new guidance, Katharine Tylko from the Campaign Against Painful Hysteroscopy, also highlighted shortcomings in this new paper, stating:

    "This guidance does not cover all of the options for hysteroscopy including IV sedation with analgesia, procedural sedation analgesia, spinal anaesthesia and light general anaesthetic. 

    Instead it continues to promote a 'trial by outpatient hysteroscopy’ approach, where many women suffer such intolerable pain that the procedure has to be abandoned. Often, it is only then they are allowed to arrange a hysteroscopy with the aid of an anaesthetist".

    Translating guidance to practice

    Despite the issues we’ve highlighted, if implemented consistently and well, the good practice paper has the potential to raise standards of hysteroscopy care and reduce the current postcode lottery of experiences patients have of this procedure.

    However, we know from patient feedback that previous hysteroscopy guidance has not been consistently followed, leading to unacceptably poor experiences and unsafe care. This failure to translate what we know will improve patient safety to what is done in practice is not unique to hysteroscopies. It happens in a range of other areas, as detailed in our report last year Mind the implementation gap'[31]

    Questions therefore remain around how effectively the new RCOG guidance will be implemented and whether this will lead to improvements in patient safety.

    Following on from this good practice paper, RCOG have now launched a consultation into a new Green Top Guideline on hysteroscopy.[32] Green Top Guidance is comprised of evidence-based recommendations that are intended to assist clinicians and individuals in making decisions about appropriate tests or treatment for specific conditions or circumstances. This could potentially have a significant impact on how hysteroscopies are approached in the NHS.[33]

    This consultation is open to patients and professionals and provides further opportunity to influence and inform hysteroscopy practice. Building on our comments here, we will be formally submitting a response prior to the deadline on the 13 March 2023.  We would welcome hearing your thoughts on this to help inform our response, which you can share with us directly by emailing hello@patientsafetylearning.org.

    Find out more about the consultation.

    Calls for action

    Considering the patient safety concerns detailed in this blog, in the context of recent policy developments nationally, Patient Safety Learning is calling for the following to improve patient safety in hysteroscopy procedures:

    1. An independent review of hysteroscopy services across the NHS. This should assess the scale of psychological and physical harm, the application of informed consent, barriers to safe care and the role of sexism and misogyny in the treatment of women undergoing hysteroscopy procedures. We believe it would be beneficial for this to be supported by the Patient Safety Commissioner for England and the Healthcare Safety Investigation Branch, and equivalent personnel and organisations in the devolved administrations.
    2. Publication of a clear implementation plan for the new RCOG good practice and green-top guidance. This should include timeframes for implementation, measures of success, plans for working with patients and other key stakeholders, details of associated staff requirements and training, and information on how progress will be reviewed, monitored and reported on.
    3. NHS England and equivalent bodies in the developed administrations should mandate the collection of patient reported experience and outcome measures for all hysteroscopy procedures and make this data publicly available.
    4. Severe pain during hysteroscopy procedures, as reported by patients, to be recorded by healthcare professionals as a patient safety incident.
    5. Examples of hysteroscopy good practice should be published by NHS England and equivalent bodies in the devolved administrations and shared widely to clinicians, service managers and patient safety specialists, to inform improvements in outpatient hysteroscopy so that all patients can benefit.
    6. Research should be commissioned to identify the factors that lead to patients being at greater risk of experiencing high levels of pain during outpatient hysteroscopy. This should then be used by NHS England, equivalent bodies in the devolved administrations and RCOG to create evidence-based guidance to support clinicians in identifying patients most at risk of severe pain during hysteroscopy.

    Final thoughts

    Recent activity surrounding hysteroscopy safety has kept these important conversations going among clinicians, patients and MPs. Positive steps have been taken and verbal commitments have been made.

    Momentum must not stop here.

    Every week, patients continue to share experiences of severe pain, uninformed consent, misogynistic care and lasting psychological trauma.

    There is clearly much more to be done to ensure patients have access to safe, respectful hysteroscopy care and are always provided with the information and options necessary to be able to provide truly informed consent.

    The RCOG guidance aims to achieve optimal outcomes for women. But without a robust implementation strategy, associated resources and genuine engagement with patients, hysteroscopy experiences will inevitably continue to vary and harm will persist.

    Share your insights

    If you would like to share your insights around hysteroscopy, please contact us at content@PSLhub.org

    References

    1. Harrison, R, Kuteesa, W, Kapila, A. Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy. Journal of Anaesthesia. 2020.
    2. Royal College of Obstetricians and Gynaecologists. Pain relief and informed decision making for outpatient hysteroscopy (Good Practice Paper No. 16). 2023.  
    3. Morgan M, Dodds W, Wolfe C at al Women's views and experiences of outpatient hysteroscopy: implications for a patient-centered service. Nurs Health Sci. 2004 Dec;6(4):315-20.
    4. Patient Safety Learning. Improving hysteroscopy safety. 2020.
    5. Hansard. House of Commons Debate – NHS hysteroscopy treatment. 31 January 2023.
    6. Patient Safety Learning. Improving hysteroscopy safety. 2020.
    7. Patient Safety Learning’s the hub, Community Forum, Painful Hysteroscopy. 2020.
    8. Hysteroscopy Action. CAPH Survey Results – Hysteroscopy Action. Accessed 27 February 2023.
    9. Patient Safety Learning YouTube channel. 2020: Raising awareness about painful hysteroscopies - YouTube (see comments below the video). Accessed 27 February 2023.
    10. Harrison, R, Kuteesa, W, Kapila, A. Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy. Journal of Anaesthesia. 2020.
    11. Morgan M, Dodds W, Wolfe C at al Women's views and experiences of outpatient hysteroscopy: implications for a patient-centered service. Nurs Health Sci. 2004 Dec;6(4):315-20.
    12. Hansard. House of Commons Debate – NHS hysteroscopy treatment. 31 January 2023.
    13. Grandmother-of-three, 67, was left with PTSD after routine NHS medical check | Daily Mail Online
    14. Morgan M, Dodds W, Wolfe C at al Women's views and experiences of outpatient hysteroscopy: implications for a patient-centered service. Nurs Health Sci. 2004 Dec;6(4):315-20.
    15. Maguire K, Morrell K, Westhoff C, Davis A. Accuracy of providers' assessment of pain during intrauterine device insertion. Contraception. 2014 Jan;89(1):22-4
    16. General Medical Council. Decision making and consent - ethical guidance. Accessed 27 February 2023.
    17. Royal College of Obstetricians and Gynaecologists. Pain relief and informed decision making for outpatient hysteroscopy (Good Practice Paper No. 16). 2023.  
    18. NHS. Consent to treatment. Accessed 27 February 2023.
    19. Hysteroscopy Action. CAPH Survey Results – Hysteroscopy Action. Accessed 27 February 2023.
    20. Patient Safety Learning’s the hub, Community Forum, Painful Hysteroscopy. 2020.
    21. Havard Health publishing. When a pelvic exam is traumatic. 2019.
    22. Zayed S, Elsetohy K, Zayed M,  et al. Factors affecting pain experienced during office hysteroscopy. Middle East Fertility Society Journal. 2015 Sep Vol. 20 (3): 154-158
    23. Patient Safety Learning YouTube channel. 2020: Raising awareness about painful hysteroscopies - YouTube (see comments below the video). Accessed 27 February 2023.
    24. Patient Safety Learning’s the hub, Community Forum, Painful Hysteroscopy. 2020.
    25. Hansard. House of Commons Debate – NHS hysteroscopy treatment. 2023.
    26. Department of Health and Social Care. First ever Patient Safety Commissioner appointed. 2022.
    27. Patient’s Association. Patient Safety Commissioner for England, Patient Safety Commissioner: 100 Days Report. 2 February 2023.
    28. Hansard. House of Commons Debate – NHS hysteroscopy treatment. 2023.
    29. Royal College of Obstetricians and Gynaecologists. Pain relief and informed decision making for outpatient hysteroscopy (Good Practice Paper No. 16). 2023.  
    30. Patient Safety Learning. Guidance for outpatient hysteroscopy: Consultation Response. 2022.
    31. Patient Safety Learning. Mind the implementation gap: The persistence of avoidable harm in the NHS. 2022.
    32. Royal College of Obstetricians and Gynaecologists. Green-top Guidelines No. 59 Outpatient Hysteroscopy 2nd Edition. Accessed 27 February 2023.
    33. Royal College of Obstetricians and Gynaecologists.. Developing a Green-top Guideline: Guidance for developers. 2020. 

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