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Over the past few years, Patient Safety Learning has heard from many patients about significant safety concerns relating to hysteroscopy procedures in the NHS.[1] From the countless women who have shared individual experiences on the hub to the conversations we have had with the patient group the Campaign Against Painful Hysteroscopy, it is clear that this is a topic needing further exploration and advocacy from a patient safety perspective. I therefore welcomed a recent opportunity to engage with healthcare professionals involved in hysteroscopy procedures and share these concerns when I was invited to attend the Association of Anaesthetists Winter Scientific Meeting 2023 last month. This is the Association’s flagship conference, attended by healthcare professionals from across the UK, and I was invited to contribute to a panel session. This was focused on differing approaches to sedation for hysteroscopy procedures in both operating theatres and outpatient settings. Healthcare professional perspective from Leeds 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 through the vagina and cervix, into the womb, often with little or no anaesthesia. The panel session started with a presentation about hysteroscopies from Dr John Dalton, Dr Tracy Jackson and Maria Chalmers, Specialist Nurse Hysteroscopist. Maria spoke about the approach to hysteroscopy at the Leeds Centre for Women’s Health, emphasising the importance of: appropriate patient consent for the procedure discussing the likelihood of pain in advance of obtaining consent the patient’s right to withdraw consent or stop the procedure at any time. They described how patients, if they wanted to, were invited to review the procedure on a screen, and reported that there had been positive feedback from patients who have undergone procedures with this option. They also spoke about the value of these procedures taking place in outpatient settings where possible, creating a quicker diagnostic assessment. In their presentation, they reflected on the importance of collecting data about patient outcomes and pointed to broadly positive satisfaction scores with their service. Reflections on consent It was positive to hear a strong emphasis on the importance of patient consent, both before and during a procedure. It is an area of concern that has been consistently raised with us by patients who have undergone hysteroscopy. Through our work, we know that a significant number of women are not given sufficient information beforehand about the nature of the procedure or the potential for high levels of pain. Many have told us they were not asked about their medical history or offered different options for pain relief. These patients often reflect that the consent they gave was therefore not informed. When a patient experiences unexpected levels of pain, they can understandably feel very unsafe. This can lead to lasting trauma and a fear of accessing further important procedures or screenings. It’s therefore essential to make sure women undergoing this procedure feel they have been given all the information available. Panel discussion I introduced the concerns being expressed by many women and this generated an open discussion with colleagues from Leeds and an engaged audience of anaesthetists, many of whom were unaware of the issues that patients are raising about outpatient hysteroscopy. In the panel discussion I spoke about the experiences that have been shared with us at Patient Safety Learning. Some women have described how the lack of forewarning about this procedure, coupled with the trauma of the experience itself, left them feeling that both their body and their trust had been violated. Many women have also described receiving little or no pain relief and not being given the information they needed to make an informed choice about their own care and their own bodies. More than 50,000 people have viewed our community discussion on the hub about hysteroscopy experiences, with many having shared awful experiences exhibiting bullying, lack of compassion, lack of information and horrendous pain. Recent research, published in the British Journal of Anaesthesia, shows that a significant number (17.6%) of women rate their pain during hysteroscopy as greater than 7/10, and only 7.8% report no pain at all.[2] We know that outpatient hysteroscopy is a valuable procedure when done right, with full information, appropriate pain relief options and informed consent. However, as we have heard all too often from patients, in many cases this is not what they are experiencing.[3] Similar concerns were raised this week in a debate in the House of Commons. When discussing the implementation of good practice in these procedures, Government Minister Maria Caulfield note that such guidance was only as effective as its implementation: “The royal college is important because it can bring clinical change on the ground, but it is not enough just to assume that its updated guidance will be enough to change what happens in practice.”[4] Patients and campaigners are not unsupportive of hysteroscopy as a procedure. However, I shared our view, and that of many, that patients should not be expected to tolerate extreme pain or inconsistency of service. I emphasised a need for: increased efforts to ensure that good practice is shared widely and consistently applied. more research to better inform risk assessments about which women are most likely to affected by severe pain. ensuring that all those healthcare professionals involved in these procedures understand the importance of listening to and responding patients, giving women a range of pain relief options and providing the option to stop the procedure. It was useful to discuss with Maria and other clinical colleagues the value of hysteroscopy and the efforts that some centres are making to ensure that patients’ needs are met, and their voices heeded. It was helpful also to see in person the responses of anaesthetists in the room. There was, in some cases, clear concern about the negative experiences that have been shared with Patient Safety Learning by patients. Then we had some interesting reflections on the pain scores presented by the staff at Leeds. Many anaesthetists expressed shock that despite the good service being provided there, median pain scores are 5 out of 10. Some anaesthetists commented that patients wouldn’t be let out of recovery rooms by nursing staff with that extent of pain, and some said that they themselves wouldn’t want to undergo such a procedure in an outpatient setting with that median pain rating. The discussion was an important multi-disciplinary conversation of the value of hysteroscopy as a procedure while highlighting the very real concerns that women are experiencing when Royal College of Obstetricians and Gynaecologists guidelines are not being met consistently. The opportunity to engage in discussion with clinicians who are aiming to put patients’ experience at the heart of their service was much appreciated and we’re going to follow up with Maria and John to hear more about their service and the plans they have for continual improvement and for the best experience for women. We applaud the Association of Anaesthetists for highlighting these issues and aim to engage further to increase awareness of hysteroscopy pain and the need for urgent action. We look forward to sharing the recording of the session via the hub as soon as it becomes available. Join the conversation There is much work still needed to raise awareness of the patient safety issues concerning hysteroscopy procedures and to make the changes required to ensure good practice is applied consistently across the country. In the coming weeks, we will be publishing a new policy blog looking at this in greater detail and considering what more needs to be done to improve patient safety. In the meantime, if you have an experience you would like to share with us, please do get in touch. Perhaps you are a healthcare professional with insights to share on this topic? A patient who has had a hysteroscopy? A researcher? We'd love to hear from you if have a different perspective to add. You can join the conversation on the hub or get in touch with us directly by emailing content@pslhub.org. References 1. Campaign Against Painful Hysteroscopy, Open letter to the Department of Health and Social Care, 20 October 2020 2. Richard Harrison, William Kuteesa, Atul Kapila, Mark Little, Wiebke Gandhi, Deepak Ravindran, Carien M. van Reekum and Tim. V Salomons, Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy, 13 September 2020 3. Patient Safety Learning, Guidance for outpatient hysteroscopy: Consultation Response, 16 March 2022 4. House of Commons Debate, NHS hysteroscopy treatment, 31 January 2023

Join us to learn how welfare rights advice services are being integrated with healthcare nationwide to tackle poverty and health inequality. This event will be of interest to people working in Integrated Care Systems and public health policy and practice. Taking action on poverty and health inequality is ever more important for the NHS, as the current cost of living crisis increases hardship among communities. The consequences for health and wellbeing will be felt most keenly among low income and vulnerable patient groups. Health justice partnerships are targeted interventions that support patients with social and economic circumstances that are root causes of health inequality. They are partnerships between health services and organisations specialising in welfare rights. Advice on welfare rights issues is integrated with patient care, helping people resolve problems relating to benefits, debt, housing, employment and immigration, among others. This can support those in the hardest circumstances to maximise their health and wellbeing. This one-day in-person workshop is an opportunity to learn about health justice partnerships and how they are being implemented across the country in a range of NHS settings. We will be joined by speakers who are engaged in service delivery, policy and research, who will provide examples and insights from their work. Speakers will include: Professor Dame Hazel Genn, Director of the Centre for Access to Justice, UCL Cedi Frederick, Chair of the NHS Kent and Medway Integrated Care Board Natalie Davis, Head of Legal Support Policy, Ministry of Justice Catherine McClennan, Director of the Women’s Health and Maternity Programme, Cheshire and Merseyside Health & Care Partnership Paul Sweeting, Insight and Performance Partner, Macmillan Cancer Support Refreshments are provided and there will be opportunities for discussion and networking. Outline of the day (provisional timings) 09.15: Registration and refreshments 10.15: Plenary session 1 - Introducing Health Justice Partnerships 11.45: Plenary session 2 - Health Justice Partnership case studies 13.00: Lunch provided 14.00: Plenary session 3 - Implementing Health Justice Partnerships 15.15: Group discussion session 4 - Where next for you? 16.30: Refreshments and networking Please see our website for further information on Health Justice Partnerships. Register for a place This event is supported by The Legal Education Foundation.

Key findings The gap in Index scores between women in high-income and low-income economies nearly doubled between 2020 and 2021. In 2021, 22 points separated women in high-income economies — whose score remained unchanged at 61 — and women in low-income economies, whose score dropped from 49 to 39. Women’s ability to meet their basic needs — such as affording food — fell, while men’s ability to do so did not change. Women were slightly more likely than men to say there were times in the past year when they did not have enough money to afford needed food (37% of women vs. 33% of men). This gap was wider in 2021 than it was in 2020 — as women lost ground while men largely remained steady. Women in 2021 were more stressed, worried, angry and sad than they were in 2020 — or at any point in the past decade. Stress, worry and anger each increased by three percentage points within the span of a year, while sadness notably rose by six points. More than 4 in 10 women in 2021 said they experienced worry (43%) and stress (41%) during a lot of the day before the survey, nearly one in three experienced sadness (32%), and more than one in four experienced anger (26%) — all at record levels. In nearly 50 countries and territories, less than 10% of women said they had been tested for cancer in the previous year. Worldwide, just 12% of women in 2021 were tested for any type of cancer in the past 12 months, which means more than 2 billion of the world’s women went untested. Belief in the value of going to a healthcare professional declined among women with an elementary education or less. While belief in the value of going to a healthcare professional remained relatively stable among women with four years of education beyond high school or a college degree (92%), it dropped seven points among those with an elementary education or less — from 87% to 80% — leading to a 12-point gap between the two groups. Annual visits to healthcare professionals correspond with two additional years in a woman’s life expectancy. Even after accounting for gross domestic product (GDP) per capita, life expectancy for women who said they had been to a healthcare professional in the past year was 78, compared to 76 for women who said they hadn’t been.

It’s so important that mesh-injured women are able to access redress for their injuries, many of which are life-changing. Often, financial support is not a bonus but is necessary, as women have had to leave their jobs or reduce their hours to cope, move to accessible housing or sell their home to live with family. Many have also experienced marriage breakdown as a result of mesh complications. One in four women in Sling The Mesh need a stick to help them walk, so need to pay for mobility aids or scooters, and there are also the ongoing costs of travel to doctors and hospital appointments. Waiting times are up to four years for mesh removal, so many women cash in savings or pensions to pay for private removal which costs thousands. The psychological impact of mesh injuries also takes a toll and with long NHS mental health waiting lists, many turn to the private sector for counselling for post traumatic stress disorder (PTSD) and trauma. Likewise, many women have difficulty accessing NHS Physiotherapy so turn to the private sector for specialised physio to help mobilise internal pelvic scar tissue which can cause ongoing pain after mesh removal. The concept of redress is about proactively correcting a wrong that has been done to a group or individual. It differs from clinical negligence, which is about identifying and proving that the actions of an individual healthcare professional or service caused specific harm. Redress involves an authority taking responsibility for harm that has been caused under its watch, whereas clinical negligence is an adversarial process with strict legal boundaries. In 2020, the Independent Medicines and Medical Devices Safety (IMMDS) Review’s report, ‘First Do No Harm’ (Cumberlege Review), called for “a new independent Redress Agency for those harmed by medicines and medical devices” to be created, based on models operating effectively in other countries.[1] This Agency was to offer women harmed by mesh a specific, non-adversarial route to compensation. However, in its official response to the report, the Department for Health and Social Care (DHSC) rejected this recommendation, stating that “while the government is sympathetic to the experiences of those patients who gave evidence to the report, our primary focus is on improving future medicines and medical devices safety.”[2] The Government's failure to accept the IMMDS recommendations around setting up a Redress Agency means that the clinical negligence system is the only route left to women to pursue financial compensation, and it is a long, onerous process that is often unsuccessful. Sarah’s story - failures in the clinical negligence route Sarah* has spent the last two years fighting for redress through a clinical negligence case because of injuries following pelvic mesh surgery. Over the past few years, she has gone through two episodes of mesh erosion, two surgeries and an episode of sepsis. Since the mesh device was implanted, she has also experienced fibromyalgia and arthritis of the sacroiliac joints. She recently received a letter from the Head of Clinical Negligence at the law firm she was working with, informing her that they would not take her case forward. It was unlikely to be successful as she had her surgery before complications for mesh surgery were fully understood, and prior to 2013 when National Institute for Health and Care and Excellence (NICE) guidelines for urinary stress incontinence were changed. The letter stated: "The difficulty with your claim is that your TVT/mesh insertion surgery took place quite some time ago in 2007 when this was considered to be the gold standard to treat stress urinary incontinence, because the mesh surgery was quick, relatively simple and did not require a prolonged stay in hospital. It was only later on that the problems with mesh and the risks associated with mesh became fully known.” "A court would assess your claim based on the state of medical knowledge and expertise that existed at the time you had the mesh surgery in April 2007, with the problems and risks associated with mesh only becoming known at a later stage. "Consequently, a court will take the view that the consultant advising you at the time of your surgery in 2007 could only advise you based on the state of medical knowledge that existed at that time and cannot be held legally to blame for the treatment and advice that he gave you, if the risks associated with mesh only became apparent afterwards. "Therefore, unfortunately, further to the above we believe that if your claim proceeded further with the commencement of court proceedings, we would not have a reasonable prospect of success." It is my view that, given the evidence of harm caused by pelvic mesh, a woman who underwent surgery in 2007 should be equally entitled to redress as a woman who had surgery much later. I highlighted the issue with Helen Hughes, Chief Executive of Patient Safety Learning, who responded, “When responding to the IMMDS Review, the Government rejected a recommendation to introduce a separate redress scheme for mesh on the basis that patients could take healthcare providers to court for clinical negligence, or manufacturers for product liability. However, as this case sadly illustrates, the legal complexities involved in this means that for many mesh-injured patients this is simply not an option, leaving them with no alternative route to help meet the cost of any additional care and support they may need.” A national Redress Agency is the only way to offer equitable redress A Redress Agency specifically aimed at women with pelvic mesh injuries would offer a more equitable, compassionate route to secure compensation. As well as women having a higher chance of success going through a Redress Agency, women would not be forced to face the stress of legal action that often lasts for years while dealing with the pain and limitations they live with as a result of their injuries. At the moment, it does not appear that the political will or financial provision exists to make this a reality. *name changed for anonymity Related reading Tokenism in patient engagement is unethical—but it is also dangerous. A blog by Kath Sansom Doctors’ shocking comments reveal institutional misogyny towards women harmed by pelvic mesh - a Patient Safety Learning blog “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery References 1 First Do No Harm. The report of the Independent Medicines and Medical Devices Safety Review, 8 July 2020 2 Government response to the report of the Independent Medicines and Medical Devices Safety Review, 21 July 2021