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Found 222 results
  1. Content Article
    This episode of the Business of Healthcare podcast delves into the complex and sensitive topic of the mesh scandal which has impacted countless women's lives. Host Tara Humphrey welcomes Consultant Gynecologist and Urogynecology subspecialist Dr Wael Agur to share his expert insights on the rise and fall of mesh devices in surgical procedures. Wael offers a candid look at the multifaceted issues surrounding patient consent, the role of manufacturers, aggressive marketing strategies, and the ethical dilemmas faced by medical professionals.
  2. News Article
    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
  3. Content Article
    Getting 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.
  4. Community Post
    *Trigger warning. This post includes personal gynaecological experiences of a traumatic nature. What is your experience of having a hysteroscopy? We would like to hear - good or bad so that we can help campaign for safer, harm free care. You can read Patient Safety Learning's blog about improving hysteroscopy safety here. You'll need to be a hub member to comment below, it's quick and easy to do. You can sign up here.
  5. News Article
    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
  6. Content Article
    Spina bifida is a developmental condition affecting the brain and spine, often leading to physical and cognitive impairments, and bladder and bowel issues. Widely regarded as one of the most severe conditions compatible with life, open spina bifida can result in significant morbidity, with numerous body systems and tissues affected.
  7. Content Article
    Airing Pain is a podcast from Pain Concern. Each edition brings together people in pain and top specialists to talk about resources that can help. This edition investigates the significant inequalities and disparities in treatment among primary care pain management services. It features the following participants: Professor Jonathan Hill, Director of Research for the School of Allied Health Professionals and Professor of Physiotherapy at the Keele School of Medicine; Dr Ama Kissie, post-doctoral fellow at the University of Ghent and a Clinical Psychologist; Dr Whitney Scott, clinical psychologist who lectures at Kings College London and is the research lead at the INPUT Pain Management Unit at Guy’s & St Thomas’ Hospital.
  8. Content Article
    In this Lancet article, Lioba Hirsch shares her experience of labour and birth as a Black woman. She describes dismissive behaviours and blaming comments from several healthcare professionals that left her feeling unable to ask questions and advocate for herself and her baby. She suggests that the lack of compassion and dignity she was shown are a risk to patient safety: "I am so glad that my child was safe that day, but many children and their birthing parents are not and the slope from disrespect and disregard to dismissal and its consequences is a slippery one."
  9. Content Article
    This BMJ article summarises a selection of new and updated recommendations within The National Institute for Health and Care Excellence (NICE) guidelines on intrapartum care for healthy women and babies.
  10. News Article
    A woman who described the time in her life after a pelvic mesh implant as "soul destroying" said proposed government compensation was "disappointingly low". Claire Cooper, from Uckfield, is one of around 100,000 women across the UK who had transvaginal mesh implants. England's patient safety commissioner suggested compensation could start at around £20,000. Ms Cooper, 49, was originally given the mesh implant as a treatment for incontinence after childbirth. However, after struggling with pain following the operation, Ms Cooper claimed doctors treated her as if she were "psychotic" and "a nuisance". She said her experience was one of being "mocked". "It was just soul destroying," Ms Cooper told BBC Radio Sussex. "I lost my fight because I was met at every turn with resistance so I just lost the ability to advocate for myself." Ms Cooper eventually had surgery to remove the mesh, which she said one doctor compared to "cheese cutting wire". She is still living with chronic pain. Read full story Source: BBC News, 15 February 2024 Further reading on the hub: Doctors shocking comments to women harmed by mesh
  11. News Article
    ‘This is a very painful thing to admit,” says Emily Roberts, a 47-year-old teacher from south London, “but my entire adult life has been shaped by trying to survive what has been done to me.” Roberts (not her real name) is one of hundreds of British people who believe that they have been unintentionally maimed by orthodontists — dentists who specialise in irregular teeth and jaws. Along with thousands of others around the world, they share their experiences and post photographs and x-rays on Facebook groups. They say that lifelong damage was done to them as children — not by shady backstreet operators but by regular high street practitioners. Many say that as a result their adult lives have been blighted by painful and debilitating symptoms. “I’ve spent my entire adult life working on my body to try to get my posture right or get out of pain,” Roberts says. She has seen neurologists, osteopaths, pain-management specialists. Nothing has worked. She considered taking legal action against the orthodontist who initially treated her — for seven years in total — but the UK’s statute of limitations states that claims for dental negligence must be made within three years of the treatment and the time limit elapsed while she was still considering her options. Lauren Packham, 36, was 12 years old when she had four premolar teeth removed to correct an overbite that she says “wasn’t even that bad”. She then wore fixed braces and elastics to retract her teeth. In her twenties she had three wisdom teeth removed after they became painful. “If I knew what I know now, I wouldn’t have had them out,” she says. In the past few years Packham, who lives in Plymouth, has suffered worsening jaw pain and migraines. She has also experienced sleep problems since her late teens. “If I sleep on my back, my breathing just cuts off. I’ve since had a diagnosis of sleep-disordered breathing.” A Harley Street sleep specialist doctor she saw privately pointed to her orthodontic treatment as the likely cause of her health issues. Read full story (paywalled) Source: The Times, 11 February 2024 Further reading on the hub: “I’ve been mocked, scolded and gaslighted”: a harmed patient’s experience of orthodontic treatment A patient harmed by orthodontic treatment shares their story Share your experience of orthodontist and dentistry services
  12. Content Article
    This resource library has been created by Health Innovation West of England to provide support materials in one location for people living with pain and professionals supporting people living with pain.
  13. Content Article
    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Benjamin talks about why we need a radical shift in how we view and treat people with chronic pain and how over-investigation and over-treatment compromise patient safety. He also talks about the power of communal singing for people with long-term conditions and what wild swimming has taught him about supporting people living with chronic pain.
  14. 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.
  15. Content Article
    Childhood immunisation is a critically important public health initiative. However, since most vaccines are administered by injection, it is associated with considerable pain and distress. Despite evidence demonstrating the efficacy of various pain management strategies, the frequency with which these are used during routine infant vaccinations in UK practice is unknown. This study aimed to explore primary care practice nurses’ use of evidence-based pain management strategies during infant immunisation, as well as barriers to evidence-based practice.
  16. Content Article
    In this blog, Sexual and Reproductive Health Consultant, Neda Taghinejadi tells us about the coil fitting service she is part of in Oxfordshire. Neda explains how the service has integrated a number of tools, including a triage system to identify more complex cases, to help support a safe and quality service. 
  17. Content Article
    The opioid epidemic has been declared a public health emergency in the US, with major news outlets calling operating rooms “unintended gateways.” In response to this emergency, a team from Thomas Jefferson University sought to decrease their organisation's contribution to the potential diversion pool—the opioids surgeons prescribe to patients which go unused. This article in the journal Patient Safety looks at the research and improvement work undertaken by the team, who concluded that surgical departments can develop opioid reduction toolkits aimed at reducing the potential diversion pool of opioids in communities.
  18. Content Article
    Unconscious bias, which is deeply ingrained and often hard to recognise, impacts decisions in ways we may not realise. Implicit bias, shaped by repeated exposure to real-world interactions, also plays a significant role in this phenomenon. As such, in healthcare, intuitive decision-making can be a double-edged sword. It can help during emergencies but can also lead to discrimination and biases, especially in complex situations. In addition, hidden and automatic biases, which are further strengthened by unquestioned repeated practices, have a significant impact on daily healthcare interactions. Historically, gynaecology occupied a marginalised position within the realm of surgical care, often relegated to the status of a ‘Cinderella service’. This perception stemmed from societal attitudes and gender biases, which influenced how gynaecological surgeries were viewed in comparison with other surgical specialties. Gynaecology, being predominantly focused on women's reproductive health, was sometimes considered less prestigious or less prioritised than other surgical fields such as orthopaedic surgery or general surgery.
  19. News Article
    A patients group representing several British victims has launched legal action against the Spanish government over claims it failed to safeguard people against the potentially fatal side effects of one of the country’s most popular painkillers, involved in a series of serious illnesses and deaths. The drug metamizole, commonly sold in Spain under the brand name Nolotil, is banned in several countries, including Britain, the US, India and Australia. It can cause a condition known as agranulocytosis, which reduces white blood cells, increasing the risk of potentially fatal infection. The Association of Drug Affected Patients (ADAF) says adverse reactions to the drugs have led to sepsis, organ failure and amputations. It has identified about 350 suspected cases of agranulocytosis between 1996 and 2023, including those of 170 Britons who live in Spain or were on holiday there. The ADAF is examining more than 40 fatalities in which it considers the drug may have led, or contributed, to death. The patients group says that case reports, including a 2009 study, suggest the British population may be more susceptible to the drug’s side effects, but this has not been confirmed by independent scientific study. The group is demanding an investigation into the drug and new controls. It filed its action on 14 November in the national court in Madrid. Cristina García del Campo, founder of the organisation, said: “This drug has destroyed people’s lives and it should now be withdrawn. One lady took three tablets and she had part of her feet amputated and several fingers. Even if it doesn’t kill you, once you’ve had sepsis your body is never the same.” Read full story Source: The Guardian, 26 November 2023
  20. News Article
    Undergoing a medical procedure without an anaesthetic felt like being "flayed alive", according to Dee Dickens. The 53-year-old is one of many in the UK who have reported having a hysteroscopy, which is used to examine the uterus, without enough pain relief. Clinical guidelines say patients must be given anaesthetic options before the gynaecological exam. Cwm Taf Morgannwg health board said it was concerned by the experiences of Ms Dickens and urged her to get in touch. Ms Dickens, from Pontypridd, Rhondda Cynon Taf, had a hysteroscopy as an outpatient at the Royal Glamorgan Hospital in Llantrisant after experiencing bleeding despite being menopausal. Ms Dickens said her medical notes and past childhood sexual abuse were not considered and she was not offered a local anaesthetic prior to the procedure in October 2022. Due to underlying health conditions, including fibromyalgia and Ehlers-Danlos Syndromes (EDS), she was reluctant to have a general anaesthetic as it would have left her "poorly for weeks" so she had the hysteroscopy on painkillers only. "Everybody's bustling, so it's really difficult to advocate for yourself," said Ms Dickens. When the procedure began, she said she felt extreme pain, adding: "I was very aware that I was a black woman who felt like she was being experimented on with no anaesthetic. "They took out my coil and then they started on the biopsies and good God, that felt like being flayed alive. It was awful. "It was like having my insides scraped out and blown up all at the same time." Read full story Source: BBC News, 27 November 2023 What is your experience of having a hysteroscopy? Add your story to our painful hysteroscopy hub community thread.
  21. Content Article
    In this episode of the British Journal of General Practice podcast, the host talks to Dr Georgia Richards, a Research Fellow in the Centre for Evidence-Based Medicine at the University of Oxford, about her recent study into opioid prescribing. Opioids can also be acquired from outside of NHS services, including private prescribers, over-the-counter (e.g. CoCodamol), and through online healthcare services and pharmacies or the “dark web”. Without exploring non-NHS data, the full picture of opioid use in England cannot be understood. This is one of the first studies that sought to fill this important gap by investigating opioid prescribing in the private sector.
  22. 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.
  23. Content Article
    People with chronic pain need personalised care – an approach offering patients choice and control over their mental and physical health, basing care on what matters to them personally, and focusing on individual strengths and needs. People in this position need someone to listen and acknowledge that these symptoms are real, not all in their head. They need someone to explain their chronic pain and other symptoms, but also someone for everything else too. As well as medical care, people need time and emotional care. But how on earth can this be achieved in UK primary care in 2023? Is this really the role of a modern GP? Even if it was how can it now be in our over-stretched, fragmented, target-driven services? In North-West London, Selena Stellman and Benjamin Ellis have tested a personalised care model to improve the care offered to patients with fibromyalgia and high impact chronic pain. In this opinion piece in BJGP Life, they discuss the two key changes in their approach.
  24. Content Article
    In this interview we talk to Trainee Clinical Psychologist, Sabrina Pilav, about her latest research project exploring negative experiences of coil/ intrauterine device (IUD) procedures. Sabrina explains how their in-depth qualitative methodology could contribute to improvements in the future and shares details of how people can participate.
  25. 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
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