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Showing results for tags 'Gaslighting'.
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News Article
‘I developed ovarian cancer after my symptoms were dismissed as menopause’
Patient Safety Learning posted a news article in News
A woman has said her ovarian cancer diagnosis was delayed after her symptoms were wrongly dismissed as menopause or irritable bowel syndrome (IBS) – accusing her doctor of misogyny and medically gaslighting her. Sbba Siddique, a 55-year-old business owner, told The Independent that “unconscious bias and cultural incompetence” were also to blame for her delayed diagnosis. Ms Siddique, who lives in Berkshire, said she began to feel unwell around October 2021 but did not get diagnosed with late-stage ovarian cancer until March the following year. “I was feeling really tired all the time. I had no energy. I was piling on weight that wasn’t there previously despite not changing my eating habits. I was needing to wee more,” the mother of three recalled. “I was going back and forth with my GP trying to get an appointment. I couldn’t get a face-to-face – every consultation was on the phone or via online forms. That was part of the problem of the misdiagnosis.” Her GP was “very dismissive” of her symptoms and attributed them to IBS or the menopause, she added. “At the end of the day, I’m not the expert, the GP is – I believed him,” she said. Read full story Source: The Independent, 14 July 2024 -
Content ArticlePatients with endometriosis are having their symptoms dismissed and investigations delayed because of a lack of awareness among healthcare professionals of the chronic condition and how it presents, a report has found. The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) set out to determine the quality of care provided to adult patients with endometriosis by reviewing questionnaire responses from 623 clinicians, 167 hospitals, and 941 patients and looking at 309 sets of case notes. The inquiry found that, unlike with other chronic conditions, there is no NHS care pathway for endometriosis.
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Content ArticleWhen thinking about the difference patients can make in improving care, Patient Safety Commissioner Henrietta Hughes recalls a recent visit to a stroke unit. “One of the patients said, ‘In the toilets, it would be much better if you had toilet paper on both sides of the cubicle, because if you’ve had a stroke you’ve only got a 50% chance of being able to reach it,’” she says. “Now, the power of that story is that you can have a unit full of experts—clinical nurse specialists, professors, people with PhDs—and they know everything about stroke, but they’ve never been in a cubicle with a patient who’s had a stroke when they’re on the toilet.” For Hughes, that one moment crystallises the kind of insight that only a patient can bring. However, evidence that NHS patients often aren’t listened to keeps on coming. “The patient’s anecdote is the canary in the coal mine,” tells Hughes to the BMJ. “It’s the thing that tells us there’s something going wrong. But too often we hear about patients who have raised concerns being gaslighted, dismissed, and fobbed off.”
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News ArticleA damning report into the UK’s nursing and midwifery regulator will find the body is endangering the public due to its toxic culture and failing to address widespread racism within its ranks, The Independent can reveal. An explosive review into allegations that the Nursing and Midwifery Council (NMC) has a “deep-seated toxic culture” is set to be published next week and concerns over public safety will be one of many shocking revelations it will deliver, The Independent understands. Staff who have given evidence to the report and also spoken to The Independent, have reported being “gaslighted” and intimidated or bullied when trying to report concerns about public safety to leaders. The review, carried out by Nazir Afzal, a former chief crown prosecutor, and Rise Associates, was commissioned following reports by The Independent revealing whistleblower allegations that racism and sexism within the NMC are leading to complaints against nurses going “unchecked”. The review covers responses from around 1,000 staff and former staff, who were asked about the organisation’s culture in a survey, and hundreds of staff interviews. The Independent understands the review has found evidence supporting the whistleblowers’ accusations. Read full story Source: The Independent, 7 July 2024
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News Article
Doctors dismissed these women as hysterical. Now they're fighting back
Patient Safety Learning posted a news article in News
There’s a memory, or more specifically a moment, that came to define Heidi Metcalf’s second birth. It wasn’t saying goodbye to her husband and newborn before being wheeled into an operating theatre, or the heart attack she thought she was having as she lay there on the table. It was when a male obstetrician “ripped the placenta” out of her body, without word or warning. A nurse, Ms Metcalf knows the intervention - while immensely painful - was necessary. She couldn't push it out naturally, which was causing potentially fatal bleeding. But she hadn’t “seen or met this man before”, and she can’t get past the fact that her consent, during one of the most traumatic experiences of her life, “meant so little”. “It felt like a violation - I needed to feel involved in what was happening to my body, and not just like a bystander.” Ms Metcalf is one of thousands of Australian women who have come forward to tell their stories, after the federal government assembled a team of experts to tackle what it calls “medical misogyny”. So far, they have uncovered that a staggering two-thirds of females nationwide have encountered gender bias or discrimination in healthcare. And many say it is taking place when they're at their most vulnerable, such as during intimate examinations, or like Ms Metcalf, while in labour. Others report having their pain dismissed or dangerously misdiagnosed. Read full story Source: The Guardian, 2 July 2024 -
News Article
If a female doctor gets treated like this, is there hope for any women?
Patient Safety Learning posted a news article in News
The agonising pains came midway through Dr Rageshri Dhairyawan’s third cycle of IVF, ten years ago. “I felt as if a heavy metal shovel was scraping away at the lining of my abdomen,” she recalls. “It was like nothing I’d ever felt before,” she says. Her fear was ovarian torsion — “when the ovaries become so big from all the follicle stimulation that they twist on their stalk, which is excruciating and needs to be repaired surgically because the ovary becomes starved of oxygen.” Her husband rushed her to A&E where she was given morphine, then admitted to a gynaecology ward. As a scan revealed no ovarian torsion, “It was thought the hormones had flared up my endometriosis.” Dhairyawan was in so much pain she couldn’t move, and yet she recalls being treated as though she was an attention-seeker “trying to get strong opioids through dishonest means” and “as a nuisance for pressing my buzzer”. It was as if, she says, “I didn’t have something they thought was very serious so why was I still there? I just remember not wanting to feel like more of a nuisance because I knew what being a nuisance on a ward can look like — I’d been a doctor for ten years.” Dhairyawan’s husband demanded pain relief for her. She left hospital shaken. “It massively changed me,” she says. “The experience of not being listened to as a patient, not being taken seriously — it really shocked me. Because I thought, I’m a senior doctor, I know exactly how the NHS works, I know my medical condition, I now what to ask for. And I still can’t speak up and advocate for myself.” Read full story (paywalled) Source: The Times, 2 July 2024 -
Content ArticleSelf-advocacy is an individual's ability to communicate their own needs and is an important skill for patients. However, medical self-advocacy can be challenging, especially when there is a power imbalance between people in positions of authority and patients, who are often in a more vulnerable position. This power imbalance can be even more difficult to navigate for children and young people. In this personal account, Hannah Eaton describes her experiences as a disabled young person attempting to get support for diagnoses relating to chronic illness and neurodivergence. She aims to highlight the difficulties faced by children and young people accessing healthcare. She also makes some suggestions to improve how much children are able to take part in their own healthcare care and the healthcare system as a whole.
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Content ArticleSohier Elneil, surgeon, expert in women’s pain, and founder of the first NHS vaginal mesh removal centre, speaks to the Rebecca Coombes about fighting for better care for her female patients.
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News Article
Women with painful condition 'ignored' by doctors
Patient Safety Learning posted a news article in News
Young women from West Yorkshire have criticised a "lack of support" available for a painful and debilitating medical condition. The three patients, all in their 20s, said they either struggled to get a diagnosis of polycystic ovary syndrome (PCOS) confirmed despite numerous GP appointments, or were not given effective treatment. PCOS causes painful and irregular periods, and affects up to one in 10 women in the UK. The NHS said it "strongly advised" any woman concerned about their health to contact their GP. Alex Offer, 24, from Leeds, said it took nine years before she was told she had PCOS after doctors "ignored" her concerns from the age of 15. One GP dismissed her symptoms as being caused by stress and anxiety, she said. Laaraib Khan, 24, also from Leeds, reported a similar experience. Although she received her diagnosis at the age of 13 after her mother pushed her GP to take her complaints seriously, in the past 11 years she said she had been given "little support" and was left to manage the syndrome herself. "You have to lean on other women who are going through it rather than going to your GP, who will most likely turn you away," she said. Research by the charity Verity PCOS UK found that 60% of women with the disorder have struggled to get a diagnosis, while 95% said they had encountered problems trying to access NHS support. Read full story Source: BBC News, 3 June 2024 -
Content ArticleIn this blog, Kristy Widdicombe-Dutch shares her decades-long experience of harmful healthcare that has left her with a complete loss of trust in the system. She describes how, starting in her 20s, she has experienced disbelief, gaslighting and poor care in relation to her vascular issues, which has left her with long-term physical harm and psychological trauma.
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Content ArticleGetting a diagnosis for endometriosis now takes almost a year longer than before the pandemic, according to new research published by Endometriosis UK during Endometriosis Action Month 2024. The new study shows that diagnosis times in the UK have significantly worsened over the last 3 years, increasing to an average of 8 years and 10 months, an increase of 10 months since 2020. This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage. Endometriosis impacts the physical and mental health of 1 in 10 women and those assigned female at birth in the UK from puberty to menopause, although the impact may be felt for life.
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News Article
Endometriosis: Women in Wales waiting 10 years for diagnosis
Patient Safety Learning posted a news article in News
The wait to be diagnosed with endometriosis has increased to almost ten years, a "devastating" milestone say women with the condition. It now takes almost a year more than before 2020 to be diagnosed, according to research published by Endometriosis UK, which is setting up new volunteer-led support groups in Wales. The wait in Wales is also the longest in the UK, the research found. The Welsh government said it knew there was "room for improvement". "Nobody listened to me, and to feel like women are still going through that 20 years after my diagnosis is horrific," said Michelle Bates. The 48-year old from Cardiff was diagnosed aged 25 after suffering with "harrowing" pain from age 13 onwards - a 12-year wait. "I went back and forth to the GP with my mum, who was the only one who believed in my pain," she said. The study by Endometriosis UK, which is based on a survey of 4,371 people who received a diagnosis of endometriosis, showed almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited five times or more. It also found 78% of people who later went on to receive a diagnosis of endometriosis - up from 69% in 2020 - were told by doctors they were making a "fuss about nothing", or comments to that effect. Read full story Source: BBC News, 18 March 2024 -
News Article
Women in UK waiting almost nine years for endometriosis diagnosis, study finds
Patient Safety Learning posted a news article in News
Women are waiting nearly nine years for an endometriosis diagnosis in the UK, according to research that found health professionals often minimise or dismiss symptoms. The study by the charity Endometriosis UK suggests waiting times for a diagnosis have significantly deteriorated in the past three years, increasing to an average of eight years and 10 months, up 10 months since 2020. In Scotland, the average diagnosis time has increased by four months. The report, based on a survey of 4,371 people who have received a diagnosis, shows that 47% of respondents had visited their GP 10 or more times with symptoms before being diagnosed, and 70% had visited five times or more. The chief executive of Endometriosis UK, Emma Cox, said: “Taking almost nine years to get a diagnosis of endometriosis is unacceptable. Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision-makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health.” The report includes examples of patients’ experiences, with many being told that their pain was “normal”. One said: “I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness. I persevered for over 10 years desperate for help.” Another said she had been told she was “being dramatic” after going to her GP as a teenager with painful periods. Another said: “A&E nurses told me that everyone has period pain so take paracetamol and go home.” Read full story Source: The Guardian, 4 March 2024 -
Content ArticleWomen of colour frequently report that their race has impacted the quality of care they receive. In this study, women of colour who experienced a traumatic birth described the racist and gendered stereotypes ascribed to them (uneducated, negligent, (in)tolerant to pain, and dramatic) and how those stereotypes impacted the obstetrical care they received. Ultimately these experiences caused long-term harm to their mental health, decreased trust in healthcare, and reduced the desire to have children in the future.
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News Article
‘Gaslit by doctors’: UK women with endometriosis told it is ‘all in their head
Patient Safety Learning posted a news article in News
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. -
Content ArticleAntonio 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.
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Content ArticleIn 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.
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News Article
Patients’ experiences of disease should be taken more seriously, says study
Patient Safety Learning posted a news article in News
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 -
News ArticleNew 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
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Content ArticleDuring 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.
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News Article
Naga Munchetty: I was failed and gaslit by NHS despite debilitating periods
Patient Safety Learning posted a news article in News
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 -
News ArticleWomen 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
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News Article
Millions of women in UK face severe period pain but symptoms dismissed
Patient Safety Learning posted a news article in News
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 -
News ArticleA 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
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Content ArticleMyalgic 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
