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Found 98 results
  1. News Article
    When pharmacist Ifeoma Onwuka, known to her friends as Laura, went into hospital to have her daughter, she and her husband hoped the delivery would go smoothly, and that they would soon be able to take their new arrival home  to meet her siblings.  Onwuka's labor was induced at James Paget University Hospital in Great Yarmouth in late April 2018. Things progressed quickly and there were soon signs that her baby was in distress, causing staff to begin preparations for an emergency Caesarian section, but Onwuka's daughter was born in the recovery room. Shortly after the birth, Onwuka's condition began to deteriorate. According to the family's lawyer, Tim Deeming, she began to bleed heavily, and was taken into surgery where attempts were made to stem the loss of blood. Hours later, and only after a second consultant had been called in, she was given an emergency hysterectomy. The mother-of-three died three days later. The coroner, Yvonne Blake, said an expert had told Onwuka's inquest that the delay to surgery contributed to her death, since acting early could have controlled the bleeding.  Black mothers have worse outcomes during pregnancy or childbirth than any other ethnic group in England. According to the latest confidential inquiry into maternal deaths (MBRRACE-UK). Black people in England are four times more likely to die in pregnancy or within the first six weeks of childbirth than their White counterparts.  Read full story Source: CNN. 14 January 2021
  2. News Article
    In July last year, the Independent Medicines and Medical Devices Safety Review – chaired by Baroness Cumberlege— published its landmark report, First Do No Harm. It followed a two-year review of harrowing patient testimony and a large volume of other evidence concerning three medical interventions: Primodos, sodium valproate and pelvic mesh. Yesterday, in a written statement to Parliament, the Minister for Patient Safety, Suicide Prevention and Mental Health, Nadine Dorries, gave an update on the government’s response to the recommendations of the Cumberlege Review. In an article in The Times today, Baroness Cumberlege welcomes that the government has now accepted the need for a patient safety commissioner for England and the amendment to the Medicines and Medical Devices Bill, which is being considered in the House of Lords today, which she hopes "will swiftly become law". However, she also states that "... a full response to the review's is still outstanding 6 months after publication. Action is urgently needed to ensure we help those who have already suffered and reduce the risk of harm to patients in future". Read full story (paywalled) Source: The Times, 12 January 2021
  3. News Article
    Thousands of women have had abortions after falling pregnant while having difficulties accessing contraception during the pandemic, healthcare providers have warned. Sexual health clinics have been forced to shut or run reduced services while staff are transferred to work with Covid patients or have to self-isolate – with the profound disruption leaving many women unable to access their usual methods of contraception. Many women are struggling to get the most effective long-acting contraceptive choices of a coil or an implant due to these requiring face-to-face appointments which have largely been suspended as consultations are carried out remotely via phone or video call to curb the spread of COVID-19. British Pregnancy Advisory Service, the UK's largest abortion provider, told The Independent they provided the progestogen-only contraceptive pill to almost 10,000 women undergoing an abortion between May and October last year. Katherine O’Brien, a spokesperson for the service, said: “Many of these women will have fallen pregnant after struggling to access contraception, so there really is a huge unmet need for contraceptive services which will only worsen as lockdown and Covid continues. “We routinely hear from women during the pandemic who simply can’t access their regular method of contraception because of clinics closing or staff being deployed elsewhere or staff self-isolating.” Read full story Source: The Independent, 9 January 2021
  4. News Article
    In a Letter to the Editor published in The Times yesterday, the All Party Parliamentary Group on First Do No Harm Co-Chair Baroness Julia Cumberlege argues in favour of the work of the Independent Medicines and Medical Devices Safety (IMMDS) Review and its report 'First Do No Harm'. "Inquiries are only as good as the change for the better that results from their work." Read full letter (paywalled) Source: The Times, 5 January 2021
  5. News Article
    Women are undergoing “painful and distressing” diagnostic tests as doctors use the COVID-19 pandemic as an excuse not to offer them their choice of pain relief, HSJ has been told. At least 70 women who have had hysteroscopies this year in English NHS hospitals said they were left in extreme pain following the procedures, with many suffering trauma for several days, according to a survey by the Campaign Against Painful Hysteroscopies group. Some women claimed doctors used COVID-19 as an “excuse” not to offer sedation or general anaesthetic. Others said they were offered an inpatient appointment with general anaesthetic, but were also told it would be a long wait and would likely be cancelled due to covid pressures. Women also said they were told an outpatient procedure would reduce the time spent in hospital and consequently reduce the risk of contracting covid. The only pain relief on offer was often just ibuprofen and some women said facilities like recovery rooms were unavailable. The vast majority of the women surveyed — more than 90% — said they were traumatised for a day or longer by the pain from the procedure, A RCOG spokeswoman said: “We are concerned to hear that women are going through painful and distressing hysteroscopy procedures and that they feel COVID-19 is being used as an excuse not to offer a choice of anaesthetic." “The covid-19 pandemic has put incredible strain on the health services, and the risk of transmission of the virus has meant they’ve had to adapt their procedures. Whilst all women should be offered a choice of anaesthesia and treatment settings for hysteroscopic procedures, an outpatient setting avoids hospital admission and reduces the risk of exposure to the virus." “The RCOG guidance on this is very clear — all pain relief options should be discussed with women, as well as the risks and benefits of each. Women should be given the choice of a local or general anaesthetic. If the procedure is still too painful, no matter what anaesthetic options are chosen, it must be stopped and a further discussion of pain relief options should then take place. It’s vital that women are listened to and their choice is fully supported.” Read full story Source: HSJ, 21 December 2020
  6. Content Article
    As an additional option to the text below, you might like to watch the following short video from Helen Hughes, Patient Safety Learning's Chief Executive. Using our voice to help create awareness and change Part of how we work towards our goals at Patient Safety Learning is by responding to official reports, using our independent voice for patient safety to help raise awareness of key issues and make the case for change. In July, we set out our analysis of the Cumberlege Review, a week after it was first published. We considered the review’s findings and highlighted the key patient safety themes running throughout, many of which were consistent with those found in other patient safety scandals in the last 20 years. We looked at what needs to change to prevent these issues from recurring and made the case that patients should not be asked to ‘join the dots’ for patient safety, concluding that it is “the responsibility of healthcare leaders who must seize this opportunity to drive the changes needed for safer care”. We also published two shorter blogs on our patient safety platform, the hub, looking in more detail at the patient safety issues around informed consent and patient complaints, highlighted by the review. In August, Helen Hughes commented on the Cumberlege Review as part of our ‘2-minute Tuesdays’ series. She said that it identifies the scale and severity of harm to thousands of women and shows patient safety themes going back decades, including those found in the Paterson Report, “another report that is yet to be responded to by the Government”. Helen highlighted that the report not only highlights patient safety issues but also: “equality issues” because women claimed the issues they raised were dismissed as ‘women’s issues’ “issues of failed leadership” with Baroness Cumberlege commenting that the healthcare system, including the NHS, private providers, regulators and professional bodies, pharmaceutical and device manufacturers, and policymakers, are “disjointed, siloed, unresponsive and defensive”. Taking steps to ensure action is taken Like many others, we want to see a government response to this report, resulting in actions that will help to create a future where all patients receive safe healthcare. To help make this happen, we have been widely sharing our insights on implications for patient safety raised by this report and are seeking to work with others to ensure that its recommendations are kept on the Government’s agenda. Looking forward We will continue to use the hub to expose health inequalities, provide a public platform to those who have been harmed or dismissed and encourage people to speak up. We will use what we learn to inform the concerns we voice and the actions we take.
  7. Content Article
    As an additional option to the text below, you might like to watch the following video from Stephanie O'Donohue, Content and Engagement Manager of Patient Safety Learning's the hub: Sharing patients’ experiences on the hub In February this year, we heard from the Campaign Against Painful Hysteroscopy (CAPH) about the high numbers of women experiencing painful hysteroscopies. This prompted us to start a new Community discussion on our patient safety platform, the hub, titled ‘Painful hysteroscopy’, asking members to share their experiences with us. This has, by far, been the most popular discussion on the hub. To date, there have been close to 100 comments made, over 30 members have contributed to the discussion, and the conversation itself has received nearly 6,000 page views, with people viewing the discussion daily. Engaging with patients, clinicians, researchers and leaders Through our contact with CAPH and hearing from patients, clinicians and researchers on the hub, we’ve identified the main patient safety issues to be around consent, access to pain relief and implementation of guidance. Since identifying these issues, we have written to key political stakeholders, including Nadine Dorries MP, Minister for Patient Safety, Suicide Prevention and Mental Health, and Jeremy Hunt MP, Chair of the Health and Social Care Select Committee. More recently, we have made a request for data from the National Reporting and Learning System (the central NHS database for patient safety incident reports) to understand whether the experiences we are hearing about are being accurately captured. We believe patients’ experiences of hysteroscopy should be proactively gathered and used to evidence and inform improvements. Looking forward In 2021, we will continue calling for patients’ experiences of hysteroscopy, and their concerns about this procedure, to be heard and responded to. We want to see systems put in place to support patient safety, and evidence-based conversations occurring between clinicians and patients before procedures take place. These conversations should aim to ensure patients are well-informed of the benefits, risks and alternatives of the procedure, as well as what impact it will have on them if they choose not to proceed. You can read more about the action we believe is needed to address the patient safety issues around painful hysteroscopies.
  8. News Article
    Women in a newly opened psychiatric intensive care unit (PICU) had concerns for their sexual safety, a Care Quality Commission (CQC) report has revealed. Inspectors found women in the PICU at Cygnet Health Care’s Godden Green Hospital, in Kent, were afraid to shower because male staff did not always knock before entering bedrooms and staff entered bathrooms without permission. Patients were often looked after by male staff despite having asked for a female staff member and, in some cases, had an all-male care team. Most patients the inspectors spoke to had concerns about their sexual safety. The CQC carried out an unannounced inspection of the PICU in October, following concerns raised by members of the public and to check concerns identified in an earlier inspection of the hospital’s child and adolescent mental health services were not organisational. The PICU opened in November 2019. Since the summer, Kent and Medway NHS and Social Care Partnership Trust has commissioned some of the beds, but HSJ understands it stopped admissions for a time to review the care being provided. Inspectors found records referred to PICU patients as “difficult” and “troublemakers” and warned a ”culture of negativity towards patients had developed among some staff”. Read full story (paywalled) Source: HSJ, 4 December 2020
  9. Content Article
    Puberty, birth control and cramps I grew up in Trinidad, in the Caribbean in a very Christian household, and attended religious primary and secondary schools. Sexual and reproductive health was discussed in a functional way in biology class. While we were taught about birth control methods (condoms, IUDs, etc), we were expected to follow the abstinence only path. The shame and stigma around premarital sex meant that a lot of incorrect information was passed from girl to girl. I was one of the lucky ones – my parents provided books, encyclopaedias and, no idea why or how we had them, medical encyclopaedias. From these books I learned about puberty and sexual differentiation With all this book knowledge I felt that I was well prepared for anything puberty threw my way. My first period was met with delight that I was finally a ‘woman’. My second was met with agonising cramps and being told, “stop being a baby, that’s life”. I learned the tricks – sleep on your side to prevent leaking (tampons were not allowed), get a hot water bottle, Buscopan tablets, always having a spare pad, count the days meticulously to avoid being embarrassed. We were taught that cramps were just a way of life and you had to just get on with it. In an all-girl school, period cramps were not considered a good excuse for PE or any physical activity. My period suddenly stopped In my second year of university (my first degree) I took on a very stressful course load and quickly became overwhelmed by the volume of work needing to be submitted every week. The stresses of university life made itself known by my period stopping. By the third month, I realised that something was definitely wrong, and I approached my mother with my concern. As soon as I’d articulated my concern my mother paled and gasped “ARE YOU PREGNANT?!” I was at a loss for words because, while I was in a relationship, it had not progressed to that point and I hadn’t even considered that my mother would think that. I immediately replied “Of course not.” This led to my first gynaecological visit, where my mother’s gynaecologist tried to insist I was pregnant and refused to accept that I wasn’t sexually active at 20. After a negative pregnancy test and a normal examination, they concluded that it was university stress, prescribed me a progesterone pill to restart my period and medication to regulate it. No further investigations were done, and without the knowledge to advocate for myself, I trusted in my doctor that he was right. My boyfriend at the time saw the medication as a gift – I could now safely have sex if I wanted to. I saw it as liberating for different reasons. I could skip a period, I knew exactly when my period would be so I could plan social activities and not be caught out, my periods were now pain-free and very light. I wished I had discovered this pill years before! As a doctor, I thought I knew what to expect with an IUD Six years later, with that relationship ended and me in another country pursuing my medical degree, I was still taking this pill to avoid periods even though I was single. However, with a varying schedule I kept missing my timing for the pill and, during my Obstetrics and Gynaecology rotation, on learning more about the copper Intrauterine device (IUD) I felt that this was a fool-proof method. Having attended clinics, been taught about the insertion of the IUD and having inserted some for patients myself, I felt confident that this was the method for me. How to insert an IUD: A properly sized speculum is inserted and adjusted to bring the cervix into view. A uterine sound is used for measuring to ensure high fundal placement of the copper IUD. The IUD is then placed. If, like me, your uterus is retroflexed, a tenaculum (device with 2 prongs) is used to grasp the cervix and straighten the uterus to avoid perforation. The above information was rattled off many times by doctors and nurses we observed as medical students, and we rattled it off to patients when we were allowed to assist. The other side of the curtain I went into that room thinking I knew everything. I had all the knowledge and experience from books and my teachers. This was going to be quick and easy. I was going to get this done, and re-join my peers for the rest of the day in clinic. The patient experience is definitely weird when you know that tomorrow you are going to come in and be face to face with the nurse who is currently all up in your insides. You try to make conversation and feel less awkward about the discomfort involved in a speculum insertion, you try to follow the instructions to “relax and take deep breaths.” But nothing prepared me for the white-hot searing pain that came after the words, “now you’re going to feel a little pinch.” I screamed. And immediately felt ashamed for it. Because, this is normal, right? This is what many woman go through. Why couldn’t I just grit my teeth and bare it? Why did I have to be so weak? Through clenched teeth I endured the rest of the insertion, got off the table and dressed and stumbled out to the waiting room before collapsing on a chair. My head was spinning, my insides writhed in agony and I couldn’t form words. I was sitting there in my white coat and scrubs and being stared at by all these women in the clinic. My clothes screamed that I was on the other side of this divide, and the curious stares drove me to leave. I stood up and walked out of the clinic and went to the café next door. I quickly realised what a mistake I’d made as I fainted and was luckily caught by a café patron and placed on a chair. A kind lady brought me a drink and sat with me while I waited for the ringing in my head to stop and my vision to return to normal. When I could stand without assistance, I got a taxi home where I got into bed and cried myself to sleep. Normalisation of female pain In the weeks and years that followed that experience, and now as a practicing doctor, I find myself asking, “why do we allow female pain?” Too often female pain is dismissed as ‘normal’ and from an early age we tell girls to accept menstrual cramps. It takes years for an endometriosis diagnosis to be made, all while the girl/woman is going through pain that can be so debilitating that they cannot go to school or work. In medical school and in practice, a lot of stress is placed on testicular pain and definitive treatment as soon as possible to save a testis. Meanwhile, possible ovarian pain/torsion is made to wait. Normalisation and diminishing female pain starts from a young age, and leads to the internalisation and acceptance of this by women. Painful periods, intercourse or just pelvic pain are often dismissed or trivialised as ‘a low pain threshold’, ‘making it up’, ‘excuses’, ‘all in your head’. Women learn to apologise for their pain. I have lost count of the number of women I have seen in the A&E who start off with “I’m sorry to bother you doc, but…”. We need to understand the female anatomy better Medical textbooks abound with descriptions of male anatomy. Journals are filled with erectile dysfunction treatment. For women, the same isn’t true. Prominent obstetric and gynaecological textbooks ignore detailed female anatomy. Illustrations such as this image of the female clitoral anatomy aren’t common in medical textbooks. If, as medical professionals, we don’t know the nerve supply to an area, how can we truly say, “this won’t hurt?” In order to truly understand female pain, we need a better understanding of female anatomy and to stop thinking that if they’re not complaining, it doesn’t hurt. Improving patient knowledge also goes a long way in being able to properly communicate their pain. When a large proportion of women use the word vagina to mean the vulva, it’s difficult to effectively communicate where the pain is. Validating the patient’s experience I don’t have an easy solution, but here’s how I’m combatting it: One of the things I found that made a difference to patients (children to adults) was saying, “I believe you.” Pain is something I can experience, but I cannot see. If someone is telling me they have pain, my job isn’t to judge or dismiss it, it is to try to help to relieve that pain. Starting off a consultation validating your patient’s feelings and pain isn’t hard to do, and makes a world of difference. As medical professionals, we can make the difference for other women and help to champion better responses to female pain. Further reading Is pain a patient safety issue? (Patient Safety Learning, November 2020) ‘Women are being dismissed, disbelieved and shut out’ (Stephanie O'Donohue, November 2020) Gender bias: A threat to women’s health (August 2020) Should mismanaged pain be considered an adverse event? (March 2015) Improving hysteroscopy safety (Patient Safety Learning, November 2020)
  10. Content Article
    Written Questions are a parliamentary mechanism by which Members of the Senedd can table questions specifically for a written answer by the Welsh Government or the Senedd Commission. Laura Anne Jones MS asked what progress had been made in Wales in implementing the findings of the Cumberlege Review (The Independent Medicines and Medical Devices Review). This review examined how the healthcare system in England responds to reports about the harmful side effects from medicines and medical devices and consider how it could respond to them more quickly and effectively in the future. Vaughan Gething MS, Minister for Health and Social Services, responded as follows: The Cumberlege recommendations are primarily focused on England but they have implications for Wales. I issued a written statement on 15 July about the Cumberlege review: https://gov.wales/written-statement-baroness-cumberleges-announcement-use-surgical-mesh In that statement, I said the principle of high vigilance to ensure mesh use is restricted until the same conditions Baroness Cumberlege identified in her report are met should also apply in Wales. Her recommendations were consistent with those made by the review panel, which I set up at the end of 2019. It is my expectation that sufficient levels of clinical governance, including consent, audit and research are in place in health boards in Wales to ensure all women can be confident that all possible safeguards are in place. The evidence we have already of a significant reduction in the use of vaginal mesh procedures in Wales suggests a “pause” is already largely in place, driven by a change in clinical decision making during recent years. However, it is my expectation that these additional restrictions will be the case until the requirements for increased safeguards can be met. Action has already been taken on some of the recommendations. Specialist mesh centres have been identified in Swansea and Cardiff and work is underway in establishing a UK-wide medical device information system. In addition, the Women’s Health Implementation Group will be tasked with considering many of the recommendations of the Cumberlege review as they pertain to mesh, as this is consistent with work the group is already doing in this area. My officials are examining the other recommendations which relate to Wales and are working with the other UK governments to look at those recommendations with a UK remit. The Medicines and Medical Devices Bill, currently before the House of Lords, will also impact in relevant areas. I will issue a further statement when officials have completed their assessment of the options available and their implications for the future effectiveness of Wales’ healthcare service.
  11. Event
    until
    The institution of medicine has always excluded women. From ancient beliefs that the womb wandered through the body causing 'humours' to 19th century Freudian hysteria, female bodies have been marked as unruly, defective, and lesser. We are still feeling the effects of these beliefs today. In 2008, a study of over 16,000 images in anatomy textbooks found that the white, heterosexual male was presented as the ‘universal model’ of a human being. We see this play out in medical research, when it isn't considered necessary to include women's experiences: approximately 70% of people who experience chronic pain are women, and yet 80% of pain study participants are men or male rats. We also see these beliefs inform clinical decisions. When experiencing pain, women are more likely to be given sedatives than painkillers, in a nod to the stereotype that women are more emotional and are therefore probably exaggerating the nature of their pain. This phenomenon is known as the gender pain gap, which describes the disparities in medical care that men and women receive purely due to their gender. But while awareness has risen over the last few years, how close are we to really closing the gender pain gap? Join The Femedic and Hysterical Women in discussion with Dr Omon Imohi, Dr Hannah Short, and research charity Wellbeing of Women as we consider how far medicine has come and how far we still have to go. Register
  12. News Article
    A network of specialist surgical mesh removal centres is to be set up around England, with a launch planned for April 2021. The move implements a recommendation of the review, chaired by the Conservative peer and former health minister Julia Cumberlege, into three treatments which caused avoidable harm. These included the use of transvaginal tape and pelvic mesh to treat pelvic organ prolapse and urinary incontinence. The review, which published its report in July, heard “harrowing” stories about women left with serious complications. The mesh is hard to remove and only a few surgeons in the UK are able to carry out the procedure. Read full story (paywalled) Source: BMJ, 25 November 2020
  13. Content Article
    Radio 2 episode (1h:09m:42s into the episode) Further reading: BMJ: Vaginal examinations, consent and COVID-19 (May 2020) Birthrights: How to run a safe and rights respecting maternity service during a pandemic
  14. News Article
    Mothers are being needlessly separated from their babies under strict hospital restrictions introduced to stop the spread of COVID-19, doctors and charities have warned. The measures preventing UK parents from staying with their babies when one or both require hospital treatment are causing trauma and increasing the risk of physical and mental health problems, it is claimed. Some parents of sick babies are also being barred from seeing their child in neonatal units, which is causing distress and preventing bonding. Campaigners have written to the health secretary, Matt Hancock, to raise their concerns. They want hospitals to review these policies urgently and have called for a working group to draw up national standards to meet families’ needs during pregnancy, birth and breastfeeding. Read full story Source: The Guardian, 16 November 2020
  15. News Article
    Lawyers have begun legal action on behalf of 200 UK women against the makers of a sterilisation device, after claims of illness and pain. The device, a small coil called Essure, was implanted to prevent pregnancies. Manufacturer Bayer has already set aside more than $1.6bn (£1.2bn) to settle claims from almost 40,000 women in the US. It has withdrawn the device from the market for commercial reasons but says it stands by its safety and efficacy. The metal coil was inserted into the fallopian tube to cause scarring, blocking the tube and preventing pregnancy. Introduced in 2002, it was promoted as an easy, non-surgical procedure - a new era in sterilisation. But many women who had the device fitted have now either had hysterectomies or are waiting for procedures to remove the device. Tracey Pitcher, who lives in Hampshire, felt she had completed her family and did not want any more children. Her doctor strongly encouraged her to have an Essure device fitted, she says. But after it had been, she began to feel very unwell. "I just started to have heavy periods, migraines, which I had only ever had when I was pregnant so they were hormonal," she says. "My back was so painful I'd wake up crying in the middle of the night with pains in my hips and my back." Tracey says she battled to persuade doctors to take her symptoms seriously. But the only information she received was from a Facebook group. "... there's nobody there, there's no support apart from people that we've found ourselves, no-one will listen, because it's just 'women's things'." Read full story Source: BBC News, 15 November 2020
  16. News Article
    A Tory peer has attacked the Department of Health and Social Care’s ‘woeful’ response to the patient safety review she authored and has revealed she intends to create a cross-party group to force action. Baroness Julia Cumberlege - who led the “First Do No Harm” report on device and medicine safety– has said she has “not had a whisper” from the department over the report’s key recommendations since it was published in July. She told HSJ’s Patient Safety Congress she is setting up a cross-party parliamentary group to “pressure” the department to adopt the report’s recommendations. The report arose from The Independent Medicines and Medical Devices Safety Review, which spoke to more than 700 people, mostly women, who suffered avoidable harm from surgical mesh implants, pregnancy tests and the anti-epileptic drug sodium valproate. The report discovered “a culture of dismissive and arrogant attitudes” including the unacceptable labelling of many symptoms as “attributable to ‘women’s problems’”. It concluded that the NHS has “either lost sight of the interests of all those it was set up to serve or does not know how best to do this.” Health and social care secretary Matt Hancock and minister Nadine Dorries have apologised to the women who were harmed but the department has so far not responded to the report’s other eight recommendations in detail. Baroness Cumberlege said the cross party group would “[try] to open up a firmly shut departmental door. A department that doesn’t seem to get it.” She said: “We have been disappointed [in the department’s response] because we hoped by now we would have some sort of inclination about what’s going on." “The response from the department on the other key recommendations has been woeful. The reason they give is ‘there is a terrible amount of work to do’”. Read full story (paywalled) Source: HSJ, 11 November 2020
  17. News Article
    Older women could be less likely to receive ovarian cancer treatment. A new report analysed data from more than 17,000 cases of ovarian cancer diagnosed across England between 2016 and 2018. Three in five (60%) of women with ovarian cancer over the age of 79 did not receive either chemotherapy or surgery, while 37% of women over the age of 70 did not receive any treatment. The nature of ovarian cancer means surgery is essential in the large majority of cases to remove the tumour. The researchers cautioned that with an ageing population it is vital that women of all ages have access to the best possible treatments. Researchers also examined the various rates of treatments for ovarian cancer among women in different parts of England. They found the probability of receiving any treatment fell below the average in the East Midlands, the East of England, Greater Manchester and Kent and Medway. The report was jointly funded by The British Gynaecological Cancer Society, Ovarian Cancer Action, Target Ovarian Cancer and delivered by analysts at the National Cancer Registration and Analysis Service. Commenting on the report, Cary Wakefield, chief executive of Ovarian Cancer Action, said: "Neither your age nor location should decide your chance of survival if you are diagnosed with ovarian cancer." "Our audit is the first step in addressing the health inequalities women across England face, so we can begin to dismantle them." Read full story Source: The Independent, 11 November 2020
  18. Content Article
    Patients, campaign groups and politicians have raised serious safety concerns around outpatient hysteroscopy for several years, arguing that women are suffering avoidably. Some women have described how the lack of forewarning, coupled with the trauma of the experience itself, left them feeling that both their body and trust had been violated. Many received little or no pain relief and were not given the information needed to make an informed choice about their own care and their own bodies. Those voices need to be heard and hysteroscopy processes reviewed accordingly to ensure the safest delivery of care, reflective of lived experience. Helen Hughes, Chief Executive of Patient Safety Learning, says: “There are clear diagnostic benefits of having a hysteroscopy, and a small number of women may not feel any pain. This is not, however, a good enough reason to dismiss the significant number of women who have reported unbearable levels of pain when undergoing the procedure as an outpatient. These experiences warrant urgent attention if future harm is to be prevented.” Patient Safety Learning supports the call for: National guidance for outpatient hysteroscopy to be consistently applied Women to be provided with information and advice to inform their consent Women to be offered and provided with pain relief Significant pain to be considered an adverse event and recorded and reported as such Research to assess the scale of unsafe care and pain, the extent to which women are suffering, the implementation of national guidelines and the appropriateness of financial incentives without proper safeguards. Baroness Cumberlege reported in her recent review[2] that patients “should not have to join the dots of patient safety”. Patient Safety Learning considers that this is another example where women’s rights to safe services are being compromised, and seeks an urgent response from healthcare leaders to address this significant patient safety issue. Pain during hysteroscopy Recent research, published in the British Journal of Anaesthesia, shows that 17.6% of women rate their pain during hysteroscopy as greater than 7/10, and only 7.8% report no pain at all[3]. Another study estimates the number of women reporting intense or intolerable pain to be much higher at around 25%.[4] This data is supported by the countless testimonials from women who say they have been left feeling in shock, violated and traumatised following very high levels of pain.[5] “I began to hyperventilate with the pain, I was sweating and shaking and I believe I had gone into shock.”[6] Despite the evidence that women can experience unbearable pain, in surveying patients, the Campaign Against Painful Hysteroscopy (CAPH) found that the risk of significant pain is very rarely communicated to women beforehand. Instead, the advice given is usually to take over the counter painkillers and that any discomfort should be minimal. “I was reassured that for most women it is just like period pain and just asked to take paracetamol. Three hours later I found myself screaming from my guts, to stop! Please stop!”[7] Is there informed consent? The principle of consent is an important part of medical ethics and international human rights law. Failure to obtain informed consent can lead to avoidable patient harm, as highlighted by Nadine Montgomery’s story.[8] This led to a landmark ruling, stating that doctors must ensure patients are aware of any risks involved in a proposed treatment, and of reasonable alternatives. The NHS defines informed consent as: The person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what will happen if treatment does not go ahead. There are a growing number of women who were not given sufficient information and therefore do not feel they gave informed consent before their hysteroscopy procedure. Many were not told about the risk of high levels of pain or given an opportunity to discuss the pros and cons of all the available options (such as general anaesthetic or sedation). “I am a midwife myself and spoke to the consultant explaining how anxious I felt regarding the procedure, as I had had a very painful / difficult removal of Mirena coil previously and been told I had a cervical stenosis. I asked could I have sedation and was declined saying it would only be ‘brief discomfort’ and to just take painkillers a couple of hours before”.[9] Speaking to the House of Commons in September, Lyn Brown MP, called for urgent action to improve hysteroscopy processes and patient safety, highlighting the fact that this issue had been brought to Parliament eight times in total. In her statement, she read aloud the words of patients, illustrating the physical and psychological trauma experienced by many and the impact of not being fully informed. One account came from Rebecca, who was given no information before her appointment, received no warnings about severe pain and was not offered sedation. “The procedure seemed to go on and on. It was barbaric and, as I hadn’t been given any warning, I felt panicked and unsafe.”[10] The CAPH has surveyed many women who have reported experiences to similar Rebecca’s.[11] Particularly alarming is that we are also hearing of women whose procedures were not paused to re-obtain consent, despite clear expressions of distress and extreme pain. The responses collected by the CAPH and patient forums[12] also highlight the damaging impact that these traumatic experiences can have on a patient’s relationship with the healthcare system. A lack of forewarning of the risks, or information about the choices available, have left some mistrustful and fearful of accessing healthcare services again. Many have described feeling violated. Some have reported long-lasting trauma and have been diagnosed with Post Traumatic Stress Disorder (PTSD). “I would dream that I was back in hospital having the procedure and racked with pain. Some nights I would wake up screaming, sweating and with my heart racing. Then, during the day, I started getting flashbacks of the examination.” [13] Listening to and engaging with patients There is clearly a huge disconnect between the information given beforehand and the actual lived experience of many women who have an outpatient hysteroscopy. Research indicates there is also a substantial disconnect between patient and clinician understanding of the pain experienced during the procedure, and that clinician perception of a patient’s pain during hysteroscopy is not a reliable assessment method. [14] Listening to patients is therefore vital to understanding what is happening and how these gaps can be bridged to prevent future harm. The CAPH has been challenging the processes around hysteroscopy procedures for several years. They have engaged with hundreds of patients to understand the extent of the issue and to identify common themes. In October they wrote to Matt Hancock MP, Secretary of State for Health and Social Care and Nadine Dorries MP, Minister for Patient Safety, Suicide Prevention and Mental Health. [15] In their letter, they used both empirical data and the personal stories of women to illustrate the prevalence and seriousness of the issue. Lyn Brown has also retold the stories of women to parliamentary peers, calling for urgent action in response and yet the issues raised have still not been addressed. The Cumberlege Review illustrates the devastating and long-lasting consequences that can occur when patients are not listened to. We know the dismissal of patient voices provides space for harm to persist and causes further psychological distress to those involved. With growing concerns and evidence of harm, it is imperative that hysteroscopy patients are actively encouraged to provide feedback and that they are listened to at all stages of the process. Current guidance The CAPH have been working with the Royal College of Obstetricians and Gynaecologists (RCOG) and others to develop and promote good practice guidance.[16] Collaborative approaches are key to resolving patient safety issues and Patient Safety Learning welcomes and supports this work. However, it is clear that guidance is not being consistently adhered to, leaving women susceptible to alarmingly varied standards of hysteroscopy care. This raises important questions. Why are good practice guidelines that already exist not being effectively communicated to clinicians and patients, and implemented? How are examples of excellence being shared between clinical colleagues so that all patients can benefit and receive safer care? What are the barriers? Finding the answers to these questions will be key to improving hysteroscopy processes for all women. Currently, the NHS Best Practice Tariff financially incentivises hysteroscopy procedures being performed under outpatient services. Patient Safety Learning believes this framework has created unintended consequence of avoidable harm and requires urgent review. The safety of patients must be prioritised.[17] Responding to concerns about this in a recent House of Commons debate, Nadine Dorries indicated that NHS England and NHS Improvement will shortly be looking at policy proposals for the 2021-22 national tariff, which would remove this incentive.[18] What action is needed? So, if we know that there is a significant problem, why is it not being addressed? Why are NHS leaders not listening to women, to MPs or to clinicians? Why have effective clinical procedures not been applied safely to thousands of women over many years? Patient Safety Learning believes that the reasons for this are well reflected in the Cumberledge Review. We eagerly await the government’s response to its recommendations, but we must act urgently to address painful hysteroscopies. Both the CAPH and Lyn Brown have made several recommendations to the government for improving hysteroscopy processes.[19-20] Recently, pain researcher and co-author of Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy, Dr Richard Harrison, has highlighted his own concerns: "The dangers of advertising hysteroscopy as a mildly painful procedure are many. Firstly, this stands to put women off engaging with a very useful diagnostic test for the identification of serious medical conditions, such as ovarian cancer or endometriosis. But secondly, it is highly plausible that the resulting prediction error stands to make the experience even more painful than if patients were appropriately warned."[21] On social media, clinicians are also questioning why women are not warned of the risk of pain involved in gynaecological procedures, and why medical education describes these procedures as being only mildly discomforting for women.[22] This touches on a much wider debate around gender pain bias in healthcare[23]. Drawing on all these insights and recommendations, Patient Safety Learning believes that we need to consider the following: Designing and delivering for patient safety o National guidance for outpatient hysteroscopy should be consistently applied o There should be a clear requirement to prevent unsafe care and painful hysteroscopies; this should be embedded in commissioning guidance o There should be the removal of perverse financial incentives o Women should be offered and provided with pain relief o Patient feedback needs to be routinely collected and made publicly available in order to inform the delivery of safer care and respond appropriately in the event of harm o Significant pain should be considered an adverse event, being recorded, reported and responded to appropriately o Research should be undertaken to assess the scale of unsafe care and pain, the extent to which women are suffering, the implementation of national guidelines and the appropriateness of financial incentives and proper safeguards. Patient information, advice, and consent o Patient information should include the risk of severe pain and the clinical factors that may make someone more susceptible (see RCOG patient leaflet developed with CAPH)[24] o Patients should be made aware of all available choices for pain management and supported in weighing up the risks and benefits o It must be clearly communicated to patients that they can stop the procedure at any point o Patients should be encouraged to bring someone with them in case they require physical or psychological support following the procedure. Staff competence and training o Only trained staff should undertake hysteroscopies o Hysteroscopy staff should receive standardised and regulated training. This should include the risks of severe pain, clinical factors that make someone more susceptible, the limitations of clinician perception to assess pain, the importance of listening to women throughout and the application of consent guidelines. How can you help? From patients to politicians, clinicians to researchers, charities to campaigners, there are many people who are working tirelessly to improve hysteroscopy processes. Patient Safety Learning want to help ‘join the dots’ and bring those insights together to work towards safer care. We will support and promote this work, using our influence to promote the action that is needed. Raise awareness We would encourage readers to share this blog widely on social media platforms to help raise awareness of the safety issues surrounding hysteroscopy and to add weight and urgency to the call for action. #share4safety The content of this blog or the CAPH open letter can also be used as a letter template for anyone wishing to call for action from their local MP. They also provide a useful briefing tool, that can be used to inform journalists, decision makers and clinical leaders of the situation. You can find out how to contact your MP here. Join the conversation Are you a healthcare worker with insights to share on this topic? Are you a patient who has had a hysteroscopy? Perhaps you are a researcher or have a different perspective to add? We are capturing insights and suggestions for action on a new area of the hub, our free learning platform for patient safety. You can join the conversation here or get in touch with us directly by emailing content@pslhub.org. Stay connected Join the Patient Safety Learning community and sign up to the hub for free. As a member, you’ll be able to join the conversation, get early access to events and receive regular news and updates about patient and staff safety. Follow us on: Twitter @ptsafetylearn Facebook Patient Safety Learning LinkedIn Patient Safety Learning References [1] NHS England and NHS Improvement, 2019/20 National Tariff Payment System – A consultation notice: Annex DtD Guidance on best practice tariffs, (2019). [2] Baroness Cumberlege, J. The Independent Medicines and Medical Devices Review. 2020. [3] Harrison, R, Kuteesa, W, Kapila, A. Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy. Journal of Anaesthesia. 2020. [4] Jansen FW, Vredevoogd, CB, Van Ulzen K, et al. Complications of hysteroscopy: a prospective, multicenter study. Obstet Gynecol. 2000; 96: 266-270. [5] Campaign Against Painful Hysteroscopy: Patient Stories. 2018. [6] Care Opinion forum, Painful Hysteroscopy. 2017. [7] Erminia. "I didn't sleep for 5 nights after this happened". Care Opinion 2018. [8] Montgomery N. Nadine’s Story: Consent. NHS Resolution 2019. [9] Campaign Against Painful Hysteroscopy. Open Letter to Matt Hancock MP and Nadine Dorries MP. [10] Hansard, House of Commons, NHS Hysteroscopy Treatment. 2020. [11] Campaign Against Painful Hysteroscopy: Patient Stories,. 2018. [12] Patient Safety Learning’s the hub, Community Forum, Painful Hysteroscopy. 2020. [13] Daily Mail, Grandmother-of-three, 67, was left with PTSD after routine NHS medical check caused pain worse than childbirth... and she’s one of thousands of women. 2020. [14] Harrison, R, Kuteesa, W, Kapila, A. Pain-free day surgery? Evaluating pain and pain assessment during hysteroscopy. Journal of Anaesthesia. 2020. [15] Campaign Against Painful Hysteroscopy. Open Letter to Matt Hancock MP and Nadine Dorries MP. [16] Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018. [17] NHS England and NHS Improvement, 2019/20 National Tariff Payment System – A consultation notice: Annex DtD Guidance on best practice tariffs. 2019. [18] Hansard, House of Commons, NHS Hysteroscopy Treatment. 2020. [19] Campaign Against Painful Hysteroscopy. Open Letter to Matt Hancock MP and Nadine Dorries MP. 2020. [20] Hansard. NHS Hysteroscopy Treatment. House of Commons 2020. [21] Harrison, R. "Pain-free hysteroscopy". Richard Harrison's website. 2020. [22] Twitter thread [23] Billick J. Pain Bias: The health inequality rarely discussed. BBC Future. 2018. [24] Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018.
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