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Found 157 results
  1. News Article
    Researchers have warned there is a lack of evidence around prescribing antidepressants for chronic pain. Guidance from the National Institute for Health and Care Excellence (Nice) in 2021 recommends that an antidepressant (amitriptyline, citalopram, duloxetine, fluoxetine, paroxetine or sertraline) can be considered for people aged 18 and over with pain lasting longer than three months which cannot be accounted for by another diagnosis. The guidance said the drugs may help with quality of life, pain, sleep and psychological distress, even if the patient is not suffering depression. A separate guideline on neuropathic (nerve) pain recommends offering a choice of treatments, including amitriptyline and duloxetine, alongside a discussion on possible benefits and side-effects. However, researchers writing in the BMJ have warned that recommending antidepressants for pain is not always backed by evidence. Professor Martin Underwood from the University of Warwick, said: “There is a role for antidepressants in helping people living with chronic pain, however, this is more limited than previously thought. “Antidepressants may have unpleasant side effects that patients may wish to avoid. “We need to work harder to help people manage their pain and live better, without relying on the prescription pad.” Read full story Source: The Independent, 1 February 2023
  2. Content Article
    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
  3. Content Article
    What is a Westminster Hall debate? Westminster Hall debates give Members of Parliament (MPs) an opportunity to raise local or national issues and receive a response from a government minister. Any MP can take part in a Westminster Hall debate. Hysteroscopy procedures in the NHS In this debate Lyn Brown MP noted the significant number of women who experience extreme levels of pain when undergoing hysteroscopy, highlighted by groups such as the Campaign Against Painful Hysteroscopy. She shared several patient testimonies, raising concerns about healthcare professionals dismissing and ignoring patient feedback and emphasised the need for NHS trusts to offer patients who need a hysteroscopy a choice of appropriate pain relief. Key issues raised in this debate included: Concerns patients who have negative experiences in relation to hysteroscopy may be afraid to access important health procedures in future, with a long-term impact on their health. A lack of formal data collection by the NHS on cases of painful hysteroscopy. Concerns that a new proposed target of aiming for 90% of hysteroscopy happening within outpatient rooms, which has emerged from the Getting It Right First Time programme, may exacerbate the number of cases where patients do not receive appropriate pain relief options. That new good practice guidance from the Royal College of Obstetricians and Gynaecologists (RCOG) on this issue is due to be published imminently. That more research is needed into hysteroscopies, particularly for post-menopausal women. Concerns about the need to challenge potentially embedded views among gynaecologists in regards to pain and patient experiences of this procedure. Feryal Clark MP recounted her personal experience of having a painful hysteroscopy procedure. This debate was responded to on behalf of the Government by Maria Caulfield MP, Minister for Mental Health and Women’s Health Strategy. Key points in her response included: She was planning to meet with the Campaign Against Painful Hysteroscopy group to discuss these issues further. The importance of the new RCOG best practice guidelines being rolled out in practice, and ensuring this brings clinical change on the ground. That hysteroscopy had not been included in the initial priorities of the Women’s Health Strategy as the Government wanted to wait on the new RCOG guidance before acting. There is a space being set up on the NHS website for women’s health so that women who are going for a procedure can easily access all relevant information. She has asked Professor Dame Lesley Regan, the Government’s Women’s Health Ambassador, to discuss the issues surrounding hysteroscopies further with Dr Henrietta Hughes, the Patient Safety Commissioner for England. Watch the debate in full Read the transcript 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? You can join the conversation here or get in touch with us directly by emailing content@pslhub.org. Related reading Patient Safety Learning, Improving hysteroscopy safety, 6 November 2020. Patient Safety Learning, Through the hysteroscope: Reflections of a gynaecologist, 26 January 2021. Patient Safety Learning, Guidance for outpatient hysteroscopy: Consultation Response, 16 March 2022. Richard Harrison, “Pain-free hysteroscopy”, a blog by Dr Richard Harrison, 6 November 2020.
  4. News Article
    Artificial hip and knee joints that have to be removed after failing early are to be examined routinely to save the NHS £200million a year – and reduce unnecessary pain for patients in future. Less than 1 in 100 removed implants are examined to see why they failed, so surgeons don’t learn what went wrong or pick up on potential scandals. Consultant orthopaedic surgeon Raghavendra Sidaginamale, of North Tees and Hartlepool NHS Trust, said: "Most removed implants are put in the bin. A wealth of information goes down the drain." Now the NHS is setting up an Implants Analysis Service, enabling hospitals to send them off to be analysed for signs of unusual wear or chemical degradation. Each year, 15,000 hip and knee replacements are replaced. If this happens within ten years, they are deemed to have failed early. Jason Wilson, of the IAS, said they are ‘like a black box flight recorder in a plane’, adding: "They hold a wealth of information we can learn from." Read full story Source: Daily Mail, 29 January 2023
  5. News Article
    Families of people with dementia have said there is a national crisis in care safety as it emerged that more than half of residential homes reported on by inspectors this year were rated “inadequate” or requiring improvement – up from less than a third pre-pandemic. Serious and often shocking failings uncovered in previously “good” homes in recent months include people left in bed “for months”, pain medicine not being administered, violence between residents and malnutrition – including one person who didn’t eat for a month. In homes in England where standards have slumped from “good” to “inadequate”, residents’ dressings went unchanged for 20 days, there were “revolting” filthy carpets, “unexplained and unwitnessed wounds” and equipment was ”encrusted with dirt”, inspectors’ reports showed. Nearly one in 10 care homes in England that offer dementia support reported on by Care Quality Commission inspectors in 2022 were given the very worst rating – more than three times the ratio in 2019, according to Guardian analysis. Read full story Source: 29 December 2022
  6. News Article
    The Welsh ambulance service has apologised after a 93-year-old woman was left “screaming in pain” while lying on the floor with a broken hip during a 25-hour ambulance wait. Elizabeth Davies fell at her care home on Saturday and was finally picked up at 1.15pm on Sunday and admitted to Ysbyty Gwynedd hospital in Bangor on Monday, where she endured another 12-hour wait before being admitted to a ward. A hip fracture was later confirmed in surgery. Her family have said the incident, which occurred before a 24-hour strike on Wednesday by ambulance workers, was “unacceptable”. Her son, Ian Davies, from Pwllheli, said: “It was very upsetting to have to see her lying on the floor screaming in pain for over 24 hours.” After her injury, staff at the care home, where Davies has lived for 17 years, are understood to have propped a pillow under her head and tried to make her comfortable on the wooden floor, using a small heater to keep her warm in case she went into shock, as well as providing an absorbent pad so she could urinate. Her son, a community care worker, said: “They called for an ambulance but were advised an ambulance wouldn’t be available for six to eight hours as they were so busy. “They said my mother would be a priority because of her age. The care home then called us and we came immediately. “I don’t blame the ambulance staff because they are told what jobs to do and my mother wasn’t on the list.” It is understood the care home made nine calls, with a 10th made by Ian Davies. Read full story Source: The Guardian, 20 December 2022
  7. Content Article
    Each NHS Trust and local pharmacies in Dorset have been promoting awareness and providing updates for staff and patients on medications without harm and medicines safety following World Patient Safety Day in September. On Monday 17 October we held a face-to-face event to share learning from medicines incidents and to specifically focus on the safety improvement programme to reduce harm from opiate drugs in our communities. This provided an excellent opportunity to network with other healthcare professionals. Speakers on the day were: Head of Medicines Improvement at NHS Dorset who set the scene for the morning with facts and figures for discussion. Clinical Lead for the Wessex Academic Health Science Network Polypharmacy programme provided an update on the wider safety improvement work. Patient Safety Specialist with NHS Dorset presented a patient story of a person that died following accidental fatal intoxication with liquid morphine. Deputy Chief Pharmacist at Dorset County Hospital (DCH) and long serving Medicines Safety officer in Dorset shared the improvement work that has taken place in DCH in relation to opiate prescribing on discharge. Dr Sarah Kay, GP lead for Patient Safety with NHS Dorset, concluded the morning with a facilitated discussion session to share best practice and consider how organisations can work together to improve medicines safety. Attendees included Primary Care Network (PCN) pharmacists, hospital trust pharmacists, NHSD patient safety teams, medicines optimisation team, primary care team, AHSNs. In Dorset we prescribe almost double the volume of liquid opioids to patients in our hospitals when compared with others in our region. This increases the risk of prolonged prescribing in primary care, which can lead to long-term tolerance and dependency, and contributes to nearly 700 patients requesting multiple liquid opioid prescriptions each month for chronic non-cancer pain. This prescribing is having a disproportionate impact on women between 40 and 60 years of age and in more deprived areas of our county. At the event, we heard from some acute trusts and PCN colleagues who are having success in reducing opiate usage and promoting safe pain management strategies for people, as well as from the Wessex AHSN who can support ongoing improvement programmes. The morning was compered by NHS Dorset Patient Safety Partner (volunteer lay role) Simon Wraw who ensured the patient perspective was part of our discussions. The opportunity to meet face to face with colleagues was really valuable, as well as making new counterpart connections for each professional group. Feedback from attendees was positive and we hope to run a similar event in the future with a different topic focus. On the topic of networking, we have also contributed to the setup of the NHSE South West GP Quality Network. A scoping meeting was held in October to co-produce a plan for the network with participants. We hope to build the network, so if you work in any patient safety role across the South West and have an interest in general practice and connecting with colleagues to share good ideas and troubleshoot problems together please get in touch. The next network meeting will be 22 February 2023. Please email england.swqualityhub@nhs.net for an invite. Further reading See our recent Patient Safety Spotlight interview with Sarah and Jaydee.
  8. News Article
    Mothers are being offered water injections by the NHS to relieve pain during childbirth, while in some hospitals midwives are burning herbs to encourage breech babies to turn in the womb. Safety campaigners have dubbed the practices dangerous and say that they amount to “pseudoscience” being offered by the health service. They have called on the chief executive of NHS England, Amanda Pritchard, to ban their use in a letter published over the weekend. At least three trusts in England offer water injections for pain relief, including Newcastle upon Tyne Hospitals Trust, United Lincolnshire Hospitals Trust and North Tees and Hartlepool Trust. Information on the Newcastle trust’s website describes the injections as an “alternative form of pain relief” while in Lincolnshire patients are told the body’s response to the injections “prevents pain signals from reaching the brain.” The National Institute for Health and Care Excellence (NICE), which is responsible for setting out which treatments patients should receive, has said the NHS should not use injected water for pain relief. Read full story (paywalled) Source: The Times, 27 November 2022
  9. Content Article
    The study found that duration of surgery and epidural drug used were both significant risk factors of breakthrough pain during CS in this audit. A pro-active policy is required in order to prevent breakthrough pain or discomfort during CS. Early identification of problematic epidural catheters for labour analgesia, adequate level of anaesthetic block before surgery, and administration of a prophylactic epidural top-up if duration of surgery is prolonged as opposed to the choice of local anaesthetic used, could be essential in the prevention. Further high-quality studies are needed to evaluate the many potential risk factors associated with breakthrough pain during CS.
  10. News Article
    Responding to a backlash from pain patients in the USA, the Centers for Disease Control and Prevention (CDC) have released updated guidelines that offer clinicians more flexibility in the way they prescribe opioids for short- and long-term pain. The new recommendations eliminate numerical dose limits and caps on length of treatment for chronic pain patients that had been suggested in the landmark 2016 version of the agency’s advice, which was aimed at curbing the liberal use of the medication and controlling a rampaging opioid epidemic. Those guidelines cautioned doctors that commencing opioid therapy was a momentous decision for patients. Parts of that nonbinding document were widely misinterpreted, resulting in unintended harm to patients who were benefiting from use of opioids without much risk of addiction. Patients reported they were rapidly tapered off medication by doctors or saw their medication abruptly discontinued, the CDC acknowledged in the new document. The new 100 pages of guidance — which remain only recommendations for doctors, nurse practitioners and others authorised to prescribe opioids — emphasize returning the focus to the caregiver and patient deciding on the best course of treatment. Read full story (paywalled) Source: The Washington Post, 3 November 2022
  11. Content Article
    View an up-to-date spreadsheet of responses to the campaign’s ‘Dissatisfaction Survey’ so far. These are women’s lived experiences of horrendous outpatient hysteroscopy procedures have been shared with the Campaign Against Painful Hysteroscopy Survey.
  12. News Article
    Almost 90% of those living with Long Covid in Ireland have not returned to their pre-Covid level of health, according to a new report. The study of 988 participants was carried out by APC Microbiome Ireland, a research centre based at University College Cork (UCC), in conjunction with Cork University Hospital and Long Covid Advocacy Ireland. It found that more than two-thirds of participants in the study continued to experience fatigue, memory problems, chest pain, stomach upset, and muscle pain. Those surveyed also reported that they were suffering from new symptoms that had not been present before catching Covid. These included tinnitus (38%), mouth ulcers (28%), new allergies (16%) and sexual dysfunction (13%). They said these prolonged symptoms can significantly impact their quality of life, affect their ability to work and cause significant disability. Read full story Source: BBC News, 7 November 2022 Further reading and resources can be found in our dedicated area of the hub on Long Covid.
  13. News Article
    Hysteroscopy Action says thousands of women are in extreme pain during and following the invasive procedures to treat problems in the womb, with many suffering for days. It says some are left with symptoms of post-traumatic stress and subsequently feel unable to have intimate relationships with partners. Others avoid important examinations such as smear tests. The group has written to Women’s Minister, Maria Caulfield, to raise its concerns. In its letter, it claims women are not always given the choice of intravenous sedation or general anaesthetic to reduce pain because of an NHS drive to cut costs. Some are given local anaesthetic which is often painful and doesn’t work. Others are given no drugs at all and expected to cope with distraction techniques - known as “vocal locals.” Hysteroscopy Action has urged Ms Caulfield to open more theatre space for women to have procedures under general anaesthetic as well as offering women the choice of intravenous sedation. Yet Hysteroscopy Action, which has been in touch with thousands of patients who have undergone such examinations, says women are not made aware of this. Last week RCOG President Dr Edward Morris, said it was “working to improve clinical practice around outpatient hysteroscopy”. He added: “No patient should experience excruciating pain and no doctor should be going ahead with outpatient hysteroscopy without informed consent.” "Hysteroscopy Action has collated more than 3,000 accounts of “brutal pain, fainting and trauma during outpatient hysteroscopy.” Hysteroscopy Action's spokeswoman, Katharine Tylko said: “We are counselling hundreds of patients with PTSD, who for various medical reasons find the procedure extremely painful, some even find it torturous." “This does not happen for other invasive procedures such as colonoscopy. We urge the Women’s Minister to act and are demanding an end to this gender pain-gap.” The letter, which has over 20 signatories, including Helen Hughes, Chief Executive of the Patient Safety Learning charity, Baroness Shaista Gohir, civil rights campaigner, and women’s rights activist, Charlotte Kneer MBE, calls for women to be given informed consent and choice about whether and what type of sedation they want. Read full story Source: Express, 6 November 2022 Read hub members experiences of having a hysteroscopy in the Community thread and Patient Safety Learning's blog on improving hysteroscopy safety.
  14. News Article
    More than two-fifths of people in Britain suffer from some form of chronic pain by the time they are in their mid-40s, research suggests. Scientists have found that persistent bodily pain at this age is also associated with poor health outcomes in later life – such as being more vulnerable to Covid-19 infection and experiencing depression. The findings, published in the journal Plos One, suggest chronic pain at age 44 is linked to very severe pain at age 51 and joblessness in later life. Study co-author Professor Alex Bryson, of University College London’s Social Research Institute, said: “Chronic pain is a very serious problem affecting a large number of people. “Tracking a birth cohort across their life course, we find chronic pain is highly persistent and is associated with poor mental health outcomes later in life including depression, as well as leading to poorer general health and joblessness. “We hope that our research sheds light on this issue and its wide-ranging impacts, and that it is taken more seriously by policymakers.” Read full story Source: The Independent, 2 November 2022
  15. Content Article
    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
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