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Found 38 results
  1. News Article
    Women with endometriosis who have endured years of excruciating pain are being “fobbed off” by doctors and told their symptoms are “all in their head”, leading them to give up seeking NHS treatment, new research has found. A study carried out by academics at Manchester Metropolitan University found women with the disease felt “gaslit” by doctors due to their lack of understanding of the condition. The paper, due to be published in the Journal of Health Communication later this month, also found that treatment was subject to a postcode lottery. Patients in rural areas reported travelling for hours to access a specialist with full training in the complex gynaecological condition. Endometriosis is a painful condition in which tissue similar to the lining of the womb grows around other organs inside the abdomen. It affects 1.5 million women in the UK. The study looked at the experiences of treatment and diagnosis of 33 patients and revealed how doctors’ lack of understanding of the symptoms meant women often spent years in pain before their condition was diagnosed. During this period participants were told they were exaggerating their symptoms, or their pain was dismissed as psychological. As one 27-year-old participant reported: “I feel a lot of mistrust towards the healthcare system in general, simply because I have been told that the pain was in my head, that I must have a low pain threshold or that I was in pain because I was fat.” Read full story Source: The Guardian, 21 January 2024 Share your experience of endometriosis: The Guardian newspaper would like to hear how you have been affected by endometriosis and your experience of being diagnosed and treated.
  2. Content Article
    Antonio Gonzalez speaks to Susan Standford for the Yale Anesthesiology podcast on intraoperative pain. Susanna is a patient who experienced intraoperative pain, and knowing she was not alone, she has actively raised awareness of this issue. In her own words, “Being able to feel major abdominal surgery is every bit as horrific as it sounds.” They discuss neuraxial anaesthesia for CS, guidance on testing and managing blocks, women being labelled ‘anxious’, outcome measures and targets.
  3. News Article
    Health experts say more attention should be given to patients’ experiences after research found multiple examples of their insights being undervalued. A study led by the University of Cambridge and King’s College London found clinicians ranked patient self-assessments as the least important when making diagnostic decisions. Ethnicity and gender were felt to influence diagnosis, particularly a perception that women were more likely to be told their symptoms were psychosomatic. Male clinicians were more likely to say that patients overplay symptoms. The findings prompted calls for clinicians to move away from the “doctor knows best attitude” when caring for patients. One patient shared the feeling of being disbelieved as “degrading and dehumanising”, and added: “I’ll tell them my symptoms and they’ll tell me that symptom is wrong, or I can’t feel pain there, or in that way.” Read full story Source: The Guardian, 18 December 2023
  4. Content Article
    In a study published in Rheumatology, researchers used the example of neuropsychiatric lupus, an incurable autoimmune disease that is particularly challenging to diagnose, to examine the different value given by clinicians to 13 different types of evidence used in diagnoses. This included evidence such as brain scans, patient views, and the observations of family and friends.
  5. News Article
    New official guidance on treating menopause will harm women’s health, experts, MPs and campaigners have warned. Last month, new draft guidelines to GPs from the National Institute for Health and Care Excellence (NICE) said that women experiencing hot flushes, night sweats, depression and sleep problems could be offered cognitive behavioural therapy (CBT) “alongside or as an alternative to” hormone replacement therapy (HRT) to help reduce their menopause symptoms. But critics have castigated the guidance, saying it belittled symptoms through misogynistic language, and women’s health would suffer as a result of failing to emphasise the benefits of HRT on bone and cardiovascular health as opposed to CBT. In its response to the guidance, Mumsnet said NICE's recommendations used “patronising” and “offensive” language and would be “detrimental” to women’s health. Justine Roberts, the founder and chief executive of Mumsnet, said: “Women already struggle to access the HRT they are entitled to. We hear daily from women in perimenopause and menopause who are battling against a toxic combination of entrenched misogyny, misinformation and lack of knowledge among GPs. “Too often they are fobbed off or told they simply need to put up with severe physical and mental symptoms – often with life-changing effects. “By emphasising the negative over the positive, failing to include information about the safest forms of HRT and placing CBT on a par with hormone replacement therapy, this guidance will worsen that struggle. It will make doctors more reluctant to prescribe HRT and women more fearful about asking for or accepting it.” Carolyn Harris, the MP for Swansea East and the chair of the all-party parliamentary group on menopause, said the new guidance was “antiquated”, “naive” and “ill thought-out”. ”Talking can make you feel better, but it’s not going to take away the aches in your joints and it’s not going to change how you live your life,” she said. “Whatever a woman feels is what she needs to support her through the menopause should be readily and immediately available, and that’s not true currently [of HRT or CBT]." Read full story Source: The Guardian, 11 December 2023
  6. Content Article
    During a fellowship rotation in gynaecology, Rebekah Fenton, asked the attending physicians what pain management options they could offer patients for insertion of an intrauterine device (IUD). Their answer surprised her: none.  The research on the effectiveness of pain management techniques during the procedure were not strong enough to warrant providing potential relief.  But Fenton knew the attending physician was wrong: she'd received the drug lidocaine during a recent visit to her own ob/gyn to get an IUD placed. The local anesthetic enabled her to avoid the experiences of many patients who often withstand debilitating cramping and pain during insertion, side effects that can last for hours after the procedure has ended.  By not teaching her how to administer pain treatment options such as lidocaine gel or injection, "they made the decision for me, whether I could give patients this option," said Fenton, now an adolescent medicine specialist at Alivio Medical Center in Chicago. Related hub content: See our Pain during IUD fitting community thread.
  7. News Article
    Naga Munchetty has said she spent decades being failed, gaslit and “never taken seriously” by doctors, despite suffering debilitatingly heavy periods, repeated vomiting and pain so severe that she would lose consciousness. The BBC presenter, newsreader and journalist told the Commons women and equalities committee on Wednesday that she was “deemed normal” and told to “suck it up” by NHS GPs and doctors during the 35 years she sought help for her symptoms. Munchetty was finally diagnosed with adenomyosis, a condition where the lining of the womb starts growing into the muscle in its walls, in November last year. She said she was consistently told by doctors that “everyone goes through this”. “I was especially told this by male doctors who have never experienced a period but also by female doctors who hadn’t experienced period pain,” said Munchetty. Munchetty’s diagnosis came after she had bled heavily for two weeks and experienced pain so severe she asked her husband to call an ambulance. Only then was she taken seriously, seeing a GP who specialised in women’s reproductive health. That GP advised her to use private healthcare to avoid lengthy NHS waiting lists. Munchetty and Vicky Pattison, a television and media personality, were giving evidence as part of the committee’s inquiry into the challenges that women face being diagnosed and treated for gynaecological and reproductive conditions. The committee is also considering any disparities that exist in diagnosis and treatment, and the impact of women’s experiences on their health and lives. Read full story Source: The Guardian, 19 October 2023
  8. News Article
    Women are being "failed at every stage" when it comes to maternity care, say campaigners, as they call for more support for those experiencing traumatic births. Mumsnet found 79% of the 1,000 women who answered their questionnaire had experienced some form of birth trauma, with 53% saying it had put them off from having more children. And according to the snapshot of UK mothers, 44% also said healthcare professionals had used language implying they were "a failure or to blame" for what happened. Conservative MP Theo Clarke is leading calls for more action after her own experience, where she thought she was "going to die" after suffering a third degree tear and needing emergency surgery. Now, she has set up an all party parliamentary group on birth trauma. She said: "[It is] clear that more compassion, education and better after-care for mothers who suffer birth trauma are desperately needed if we are to see an improvement in mums' physical wellbeing and mental health. "It is vitally important women receive the help and support they deserve." Chief executive of Mumsnet, Justine Roberts, said the trauma had "long-lasting effects", adding: "It's clear that women are being failed at every stage of the maternity care process - with too little information provided beforehand, a lack of compassion from staff during birth, and substandard postnatal care for mothers' physical and mental health." Read full story Source: Sky News, 15 September 2023
  9. News Article
    Millions of women and girls experience debilitating periods, yet nearly one-third never seek medical help, and more than half say their symptoms are not taken seriously, according to research. A survey of 3,000 women and girls for the Wellbeing of Women charity found that they are often dismissed as “just having a period”, despite experiencing severe pain, heavy bleeding and irregular cycles that can lead to mental health problems. Almost all of those surveyed, who were between 16 and 40 years old and based in the UK, had experienced period pain (96%), with 59% saying their pain was severe. 91% had experienced heavy periods, with 49% saying their bleeding was severe. Prof Dame Lesley Regan, the chair of Wellbeing of Women, said: “It’s simply unacceptable that anyone is expected to suffer with period symptoms that disrupt their lives, including taking time off school, work, or their caring responsibilities, all of which may result in avoidable mental health problems. “Periods should not affect women’s lives in this way. If they do, it can be a sign of a gynaecological condition that requires attention and ongoing support – not dismissal.” Wellbeing of Women has launched its “Just a Period” campaign, which Regan said aims to address “the many years of medical bias, neglect and stigma in women’s health”. This includes tips on how to get the most out of seeing your GP and what women should do if they feel they have been dismissed. Read full story Source: The Guardian, 14 September 2023
  10. News Article
    A 33-year-old New Zealand woman who was accused of faking debilitating symptoms has died of Ehlers-Danlos Syndrome (EDS). Stephanie Aston became an advocate for patients' rights after doctors refused to take her EDS symptoms seriously and blamed them on mental illness. She was just 25 when those symptoms began in October 2015. At the time, she did not know she had inherited the health condition. EDS refers to a group of inherited disorders caused by gene mutations that weaken the connective tissues. There are at least 13 different types of EDS, and the conditions range from mild to life-threatening. EDS is extremely rare. Aston sought medical help after her symptoms—which included severe migraines, abdominal pain, joint dislocations, easy bruising, iron deficiency, fainting, tachycardia, and multiple injuries—began in 2015, per the New Zealand Herald. She was referred to Auckland Hospital, where a doctor accused her of causing her own illness. Because of his accusations, Aston was placed on psychiatric watch. She had to undergo rectal examinations and was accused of practising self-harming behaviours. She was suspected of faking fainting spells, fevers, and coughing fits, and there were also suggestions that her mother was physically harming her. There was no basis for the doctor’s accusations that her illness was caused by psychiatric issues, Aston told the New Zealand Herald. “There was no evaluation prior to this, no psych consultation, nothing,” she said. She eventually complained to the Auckland District Health Board and the Health and Disability Commissioner of New Zealand. “I feel like I have had my dignity stripped and my rights seriously breached,” she said. Read full story Source: The Independent, 6 September 2023
  11. Content Article
    Myalgic encephalomyelitis (ME) was recognised as a neurological disease by the World Health Organization in 1969. However, in the 1970s some researchers labelled it as hysteria, leading to the US Centers for Disease Control to rename it as chronic fatigue syndrome (CFS). The name was changed to ME in 2015 to help legitimise the symptoms and experiences of patients. Still, the medical stigma persists. Conditions such as ME disproportionately affect women, whose symptoms and concerns are often ignored by doctors. Many patients with Long Covid face similar challenges. Since 2020, an estimated 1.8 million people in the UK have developed Long Covid after a Covid-19 infection. The debilitating condition is known to cause more than 200 symptoms. Coincidentally, Long Covid shares many symptoms with ME/CFS, including chronic pain, exhaustion, brain fog and exercise intolerance. Many patients with complex chronic illnesses are dismissed by doctors who don’t believe in their symptoms or disease even when it leaves patients bedridden. Now, people with complex illnesses such as ME and Long Covid are taking the hunt for treatments into their own hands
  12. Content Article
    Davina McCall’s documentary Pill Revolution missed an opportunity to validate painful experiences of intrauterine devices and promote better practice, writes Stephanie O'Donohue, Patient Safety Learning's Content and Engagement Manager, in an opinion piece for the BMJ.
  13. News Article
    The NHS accused vaginal mesh victims fighting for compensation of lying about pain, it has been claimed. Women suing hospitals over harm they suffered following mesh operations are being subjected to “devastating” treatment, according to Robert Rose, the head of clinical negligence at law firm Lime Solicitors. Campaign group Sling the Mesh, which represents thousands of patients, said it had received reports of those injured claiming they have been told their symptoms are psychosomatic, that their evidence is not convincing because of their mental state, or that they are lying about their pain. It comes as MPs are set to hold an inquiry following up on the Independent Medicines and Medical Devices (IMMD) Safety Review, chaired by Baroness Cumberlege in 2020, which looked into cases of patients being harmed by mesh procedures, sodium valproate, and hormone pregnancy tests. Lady Cumberlege called for the government to launch a redress scheme for patients in order to provide them with financial support without the need for them to go through clinical negligence battles. Lisa, whose name has been changed to protect her identity, launched her claim in 2016, and it was settled this summer when a judge ruled in her favour. Documents shared with The Independent reveal that NHS lawyers argued she was being “dishonest” about her injuries, and presented video surveillance. The judge subsequently ruled that she had not been dishonest. Speaking about her ordeal, Lisa said: “Once they decided that I’d been dishonest, it changed from admitting liability to basically working out pain levels and stuff like that, and I had to prove that I wasn’t being dishonest. It was genuinely the worst thing I’ve ever gone through, ever. There’s not even a word that I can use to describe it, to say how it made me feel. The stress of it was just immense." Read full story Source: The Independent, 11 September 2022 Further reading Doctors shocking comments to women harmed by mesh 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
  14. News Article
    Women who underwent damaging surgery in Irish hospitals have accused health authorities of dragging them into a "nightmare" of "gaslighting, ignorance and disrespect". Having had vaginal mesh implants, the women told an Oireachtas committee that they were "maimed" and then led on "a fool's errand" when they sought support from the HSE. The Health Committee heard from members of Mesh Ireland and Mesh Survivors Ireland who represent around 750 women. While the HSE said that it would be "extremely difficult" to provide accurate figures, it estimates that around 10,000 women had this surgery in Ireland. More than one in ten have suffered complications, Dr Cliona Murphy, Clinical Lead for the National Women and Infants Health Programme, revealed. Mary McLaughlin, Mesh Ireland, said that at one point, "I lay in bed 16 hours a day", because of the pain she was in. She demanded dignity and respect for survivors in the face of this "global scandal". The women are calling for access to a US-based expert in complete mesh removal, to mirror schemes in Scotland and the Canadian state of Quebec. Read full story Source: RTE, 29 March 2022
  15. News Article
    Women suffering from chronic urinary tract infections (UTIs) are facing mental health crises after being “dismissed and gaslighted” by health professionals for years, according to a leading specialist. Daily debilitating pain has left patients feeling suicidal, with those in recovery describing lingering mental health problems “akin to post-traumatic stress disorder (PTSD)”, said Dr Rajvinder Khasriya, an NHS consultant urogynaecologist at the Whittington Hospital in London. Patients have said they feel crippling anxiety over planning ahead to ensure there is always a toilet around, even after their condition has been controlled with treatment. Vicky Matthews, who searched for a diagnosis for three years after a recurrent UTI became chronic, said the condition caused a “gradual decline” in her mental health as medical professionals were unable to pinpoint what was causing her pain. "I questioned my pain. I questioned what was going on. I questioned whether it was actually real and that was a pretty awful thing to be dealing with on top of having physical pain,” the 43-year-old said, describing what she felt was “mental torture”. Read full story Source: I News, 12 February Further reading on the hub The clinical implications of bacterial pathogenesis and mucosal immunity in chronic urinary track infection
  16. News Article
    “You’re just unlucky,” the doctor told me. Whichever GP I saw, wherever I was, male or female, I would be asked the same questions. Do you drink alcohol? Are you sexually active? Is your underwear too tight? If I heard another woman being relentlessly quizzed like that today, I’d probably call it victim blaming." "... when you’re told, over and over, that it’s just bad luck and that some women suffer more than others, you believe it. You put your trust in the professionals. You don’t advocate for yourself because you don’t understand that there’s anything that needs fighting for." Claire Cohen, 39, had spent much of her life since her mid-teens in acute pain, begging for help. Now she’s finally been diagnosed with endometriosis, she looks at how medicine is still failing to treat a condition that can have a devastating effect on one in ten women Read full story (paywalled) Source: The Times, 13 April 2023
  17. News Article
    A woman whose daughter took her own life after being left in chronic pain caused by giving birth has spoken of her family's heartbreak. Sara Baines, 34, from Flintshire, died in September last year leaving her family devastated. This week an inquest heard Sara suffered from chronic pain due to complications resulting from surgical mesh that was implanted after she gave birth in 2011. Her mother, Alison Sharrock, says Sara was failed by the health system on multiple occasions. Sara bled heavily whilst giving birth and suffered a second-degree tear. She had to have two surgeries to repair the tear, neither of which was completely successful. Sara found herself completely incontinent, at the age of 24. In 2015, Sara was advised to have mesh fitted. Alison said: "We were told the mesh was a 'quick-fix'. It felt like the answer to all her problems and she was thrilled. She had surgery but afterwards, though the incontinence improved, she had terrible abdominal pain." The pain became so severe that Sara was offered a hysterectomy, aged 28. Afterwards, the pain only intensified, and her general health deteriorated. She suffered water infections, skin rashes, gum disease and unexplained pain. Unable to eat or sleep, she became depressed and anxious. "She felt nobody was really listening to her. She felt she was gaslighted and fobbed off," said Alison. Kath Sansom, founder of Sling The Mesh which has almost 10,000 members suffering irreversible pan and complications from surgical mesh implants, said: "Our hearts go out to Sara's family. Nine out of 10 people in our support group were not told any risks of having a plastic mesh permanently implanted." Read full story Source: Mail Online, 24 March 2023 Further reading on the hub: Doctors’ shocking comments reveal institutional misogyny towards women harmed by pelvic 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
  18. Content Article
    In this blog, US family doctor Lisa Baron highlights the role that social media has played in exposing how patients, particularly women, are dismissed and gaslighted by healthcare professionals, resulting in delayed diagnosis, deterioration and trauma. She talks about her own experience of having her symptoms and concerns dismissed by her GP, which led to a two-year delay in being diagnosed with coeliac disease, rheumatoid arthritis and Sjogren's syndrome. She goes on to talk about her experience of Long Covid and how her symptoms were dismissed and not taken seriously in spite of the life-limiting nature of her condition. She raises concerns that Long Covid patients are turning to unqualified practitioners offering untested, ineffective and expensive treatments as they are not being taken seriously by mainstream healthcare systems.
  19. Content Article
    Last year we published a blog from Dr Chelcie Jewitt on the Surviving in Scrubs campaign. The campaign was created by Dr Becky Cox and Dr Chelcie Jewitt to give a voice to women in healthcare to raise awareness and end sexism, sexual harassment and sexual assault in healthcare. On their Surviving in Scrubs website they share the awful stories from women working in healthcare of sexism, sexual harassment and sexual assault.
  20. Content Article
    “Medical gaslighting” is a controversial term that has emerged to describe a phenomenon some people – women in particular – may recognise. It refers to a patient’s feeling that their symptoms are not taken seriously, or are being misdiagnosed by healthcare professionals. When she was 37, Eleanor presented at a hospital emergency department with severe chest pain. She was diagnosed with slightly high cholesterol and sent home. Three days later, she suffered excruciating pain and was taken to hospital in an ambulance. There, she was asked if she had suffered from panic attacks and was left overnight in a cubicle, before doctors realised she was having a heart attack. She needed eight cardiac stents. “I am sure no man would be asked if they suffer from panic attacks while they’re having a heart attack,” she says. This article in the Irish Times asks why women are more likely to feel their symptoms are not being taken seriously by doctors. Further reading on the hub: ‘Women are being dismissed, disbelieved and shut out’ Gender bias: A threat to women’s health Dangerous exclusions: The risk to patient safety of sex and gender bias
  21. Content Article
    In this article for iNews, journalist Sarah Graham talks to Dee Montague-Coast, who has asthma and endometriosis, and who has had very different experiences of care between the two conditions. Dee describes how she has always received excellent care for her asthma, but how she has had to endure disbelief and many investigations, tests for sexually transmitted infections and even surgeries over twenty years, before finally being diagnosed with endometriosis by a private consultant. Sarah highlights the difficulties women face in receiving diagnosis and treatment for endometriosis, in spite of it being the second most common gynaecological condition. She also highlights geographical and race-based disparities in care and treatment and outlines how attitudes towards women's pain means their symptoms are not always listened to and taken seriously.
  22. Content Article
    In December 2022, the All Party Parliamentary (APPG) for Whistleblowing heard evidence on the state of the NHS following the recent report on the avoidable deaths and life changing injuries caused to mothers and babies at the East Kent Trust. The culture at this hospital was described as one where “everyone knew the problems” and where whistleblowers were “thrown to the lions”. A culture attributed to 45 of the 65 baby deaths reviewed.  This blog first appeared on the Whistleblowers UK website in December 2022.
  23. News Article
    A damning inquiry into the Royal College of Nursing, the world’s biggest nurses’ union, has exposed bullying, misogyny and a sexual culture where women are at risk of “alcohol and power-related exploitation”. A 77-page internal report by Bruce Carr KC, leaked to the Guardian, lays bare how the RCN’s senior leadership has been “riddled with division, dysfunction and distrust” and condemns the male-dominated governing body, known as council, as “not fit for purpose”. Grave concerns are also raised about the RCN’s annual conference, known as congress, where Carr says an “inappropriate sexual culture” warrants further urgent investigation “to identify the extent to which [it] has actually resulted in exploitation of the vulnerable”. The eminent barrister reports that there is evidence to support the “impression” that senior individuals have been seeking to take sexual advantage of subordinates and “engaging in unwanted sexual behaviours”. He calls on those whose conduct is cited in the report, whom he does not name, to consider their positions in the light of testimony of groping, humiliation of female staff members and a refusal of those in positions of responsibility to reflect on the letters of resignation from women on the council, who have complained of “gaslighting and microaggressions”. Read full story Source: The Guardian, 10 October 2022
  24. Content Article
    In this opinion piece, hub topic lead Saira Sundar looks at the culture of misogyny we have inherited in the medical profession, particularly in the obstetrics and gynaecology area of medicine. We hear time and time again women speaking up about being mistreated and/or disbelieved by medical professionals, resulting in delays in diagnosis and serious harm. However, there is a real change being forced by women themselves, with the public increasingly questioning and insisting on improvement and the right to be heard.
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