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Found 169 results
  1. 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.
  2. 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
  3. 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.
  4. 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.
  5. 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.
  6. 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
  7. 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
  8. News Article
    A woman says she was forced to pay around £25,000 for private healthcare to treat endometriosis after her symptoms were “overlooked” for eight years. Aneka Hindocha, 34, started voicing her concerns about painful periods when she was aged 25 but says she was initially told by doctors this was normal. Ms Hindocha, who described the pain of endometriosis as “someone ripping your insides out”, says the condition should have been diagnosed sooner but argued women’s pain often gets overlooked and ignored. Endometriosis is a very common chronic inflammatory condition, impacting an estimated 1.5 million women in the UK. An inquiry by the All-Party Political Group found that like Ms Hindocha, it takes an average of eight years to get a diagnosis. The condition sees tissue comparable to womb-lining grow in other places in the body - with symptoms often debilitating and spanning from infertility to painful periods, tiredness, pain while having sex, as well as depression and anxiety. “I was told painful periods were normal, which they are not, but I believed that at the time,” Ms Hindocha told The Independent. “I thought the issue was me. I thought I was being a hypochondriac.” Her health massively deteriorated in the summer of 2020 and she became bedbound for three days. “I needed someone to find out what was wrong with me,“ Ms Hindocha added. “I was crying I was in so much pain.” She says that two years later she still had not received her laparoscopy despite the fact her pain was getting more severe and so she ended up paying for a private scan. She finally got diagnosed with stage 4 endometriosis a week later. “By the time of having my surgery at the end of February 2022, it had been nearly two years on the NHS waiting list and I was still being told to wait.” Read full story Source: The Independent, 18 October 2022
  9. Content Article
    NHS England set up a handful of specialist mesh centres in April 2021 to offer treatment and support to women harmed by vaginal mesh surgery. But they aren’t achieving what they need to, and this failure is leaving thousands of women harmed by mesh without help to deal with their life-changing complications, and without hope that their pain will ever be taken seriously. Here are ten problems with specialist mesh centres, identified through my regular contact with thousands of women suffering from mesh complications. 1. There are long waiting lists of sometimes more than a year just for the first consultation Some women are waiting years for removal and some are being labelled ‘veteran patients’ and then deprioritised. These women are waiting an unacceptably long time to be seen. One woman recently posted on the Sling the Mesh Facebook group that she was finally having her mesh removal surgery after four years of waiting. Another described how she had her surgery cancelled, when she was in a gown waiting to be taken to theatre; this was the second time this had happened. 2. Some women are feeling that they are being coerced out of mesh removal surgery during the informed consent process One woman said, “I was sent for an MRI scan and told my mesh looked fine but have read on the page you can't tell from scans. Now I don't know what to think” 3. Some mesh centres are being run by the surgeons who have persistently promoted mesh and denied that it causes problems We see that behaviour continuing in consultations. One woman described her experience: “When I met the surgeon at the mesh centre I was told lots of people have had great outcomes and it felt like they thought I was exaggerating my pain.” 4. There is a lack of transparency and fully informed consent This includes over what kind of removal is being done, and there has also been a lack of honesty over what can and cannot be achieved. 5. There is no joined up thinking in terms of how removals are performed There is also no consistency in training; or indeed any specialist training at all. One woman described her uncertainty about the surgeon’s skills and training: “I just didn’t feel confident in his care. He had only done 15 mesh removals before, and not on a regular basis.” 6. There is no consistency in how outcomes are logged and there are currently no published outcomes We are told that two centres are running long term follow up, but we don't know whether centres are asking the same questions or aiming to assess meaningful quality of life issues for women. 7. There has been poor aftercare Some women have ended up in local A&E departments with severe pain, blood clots or infections, being treated by local healthcare professionals who have not heard of mesh before. In addition, physiotherapy to mobilise scar tissue is not offered as standard, so women end up having to pay privately. 8. Some mesh centres are making women feel more anxious about becoming incontinent again, rather than focusing on the opportunity to reduce their pain through removal One woman said, “I finally got to see a surgeon at a mesh centre and they told me I would probably end up worse off and would be incontinent again - they made me scared to go ahead.” More research needs to be done to understand the options, and a framework should be established offering treatment that gives women the best chance of retaining continence after surgery. For example, Kelly's plication is a relatively minor procedure that can be performed at the same time as mesh removal, but not many surgeons consider it. Autologous slings and colposuspensions are also options. 9. Some specialist mesh centres are still referring women to meaningless pain clinics where they are treated as if the pain "is all in their head." Before a removal will be considered, a large proportion of women are having to jump through the hoop of having been to a pain clinic. One woman said, “I saw the consultant today and expected to progress for removal but now I've got to do pain clinics by zoom - how is that going to help me?” Another said, “I'm confused. I went to the mesh centre and was told that the pain is probably nothing to do with the mesh. I've been referred for counselling.” 10.The prevalence of autoimmune diseases after mesh surgery needs to be logged We need to track the high proportion of women who develop these conditions when mesh is in place, or years later. Fibromyalgia, dry eyes and irritable bowel syndrome are the most commonly reported conditions, but we also see a staggering number of women developing ‘rare’ conditions such as lupus, Hashimotos and Sjörgens syndrome. Many women are not being taken seriously when they raise concerns about their systemic systems and mesh. One said, “I asked if my dry eyes and fibromyalgia were autoimmune issues caused by the mesh and the consultant laughed and said my eyes were a long way from my pelvis and how can you prove the link!” Related reading Specialist mesh centres are failing to offer adequate support to women harmed by mesh (Patient Safety Learning and Sling the Mesh) “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery ‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment Tokenism in patient engagement is unethical—but it is also dangerous. A blog by Kath Sansom
  10. Content Article
    Report findings Prevention campaigns are badly targeted and referral rates for those who do develop a health condition are inconsistent. At every stage marginalised communities face barriers to accessing high-quality recovery and rehabilitation services, including through societal discrimination, lack of cultural competence or communication barriers. A lack of consistent data is damaging the ability of health services to provide rehabilitation that meets needs. Without high-quality rehabilitation a patient experiences a downward spiral, and the prevalence of one LTC can often lead to multiple conditions.
  11. Event
    The Safe Anaesthesia Liaison Group Patient Safety Conference will be held in collaboration with RA-UK. The first session will include engaging lectures around the current work of SALG, and the second session will focus on topical issues in relation to regional anaesthesia safety. There will be a prize session for accepted abstracts, with a poster section and oral presentations. This online conference is being organised by SALG co-chairs, Dr Peter Young from the Association of Anaesthetists, Dr Felicity Platt, Royal College of Anaesthetists and Nat Haslam, Regional Anaesthesia UK The day will provide valuable knowledge for doctors engaged in clinical anaesthesia, pain management and intensive care medicine, and who have an interest in improving patient safety. Register