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Found 34 results
  1. News Article
    Screening women for breast cancer from their 40s rather than their 50s could save lives without adding to the diagnosis of harmless cancers, a UK study has found. The research was based on 160,000 women from England, Scotland and Wales, followed up for around 23 years. Lowering the screening age could save one life per 1,000 women checked, the scientists say. But experts caution there are many other considerations, including cost. Cancer Research UK says it is still "not clear if reducing the breast screening age would give any additional benefit compared to the UK's existing screening programme". The charity says the priority should be getting cancer services "back on track" for women aged 50-70, after disruption caused by the pandemic. Read full story Source: BBC News, 13 August 2020
  2. News Article
    Like most women affected by incontinence, 43-year-old Luce Brett has her horror stories. As a 30-year-old first time mum she recalls wetting herself and bursting into tears in the “Mothercare aisle of shame”, where maternity pads and adult nappies sit alongside the baby nappies, wipes and potties. But, she adds, these isolated anecdotes don’t really do justice to what living with incontinence is really like. “It’s every day, it’s all day. People talk about leaking when you sneeze or when you laugh, but for me it was also when I stood up, or walked upstairs. It was always having two different outfits every time I left the house to go to the shops. Incontinence robbed me of my thirties; it made me suicidally depressed,” Luce explains. “Everyone kept telling me it was normal to be leaky after a vaginal birth. It took quite a long time for me to find the courage or the words to stop them and say: ‘Everybody in my NCT (National Childbirth Trust) class can walk around with a sling on, and I can’t do that without wetting myself constantly’,” she adds. Read full article here.
  3. Content Article
    Take-home points Patient-related factors, cognitive errors, and systems factors are common categories of diagnostic errors, all three of which played a role in the failure to recognize that the patient in this case was in her third trimester of pregnancy and in early labor Communication among members of work teams is critical for avoiding perpetuation of cognitive errors Appropriate supervision of physician trainees is necessary to ensure high-quality patient care Diagnostic errors in the use obstetrical ultrasound can result from inadequate training and experience, and the lack of a systematic approach to examinations and interpretations; patient factors such as obesity can limit diagnostic detection of important findings.
  4. Content Article
    This article, published by the European Heart Journal, questions whether we have a sufficient fund of knowledge to close the persistent gender gap in IHD and vanquish the Yentl syndrome to history. While increasing knowledge exists regarding pathophysiological mechanistic pathways for ‘female-pattern IHD’, translational studies aimed at developing practical diagnosis and therapeutics with both traditional and novel treatments are needed. Further closure of knowledge gaps related to the paradox and the pathophysiology of IHD in women is one of our highest priorities to improve the health of the 51% of the population that is female and represent currently the majority of deaths.
  5. Content Article
    In our recent blog Analysing the Cumberlege Review; Who should join the dots for patient safety? we identified a number of key patient safety issues which were reflected in the Review’s findings. One theme running throughout the Review was a failure to engage patients in their care, most noticeably around the issue of informed consent. What is informed consent? The NHS definition of informed consent is that “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”.[1] The landmark UK Supreme Court judgement Montgomery v Lanarkshire Health Board case in 2015 reaffirmed this principle in law, setting out the legal duty of doctors to disclose information to patients regarding risks.[2] Review findings Patients being unable to make decisions on the basis of informed consent was a recurring theme in the review, manifesting itself in several ways: Patients’ consent not being sought - the Review heard from patients where consent was not given for the procedure carried out, particularly in cases for implanting pelvic mesh. The authors of the Review state that they were “appalled by the numbers of women who have come forward to say they never knew they had had mesh inserted, or where they gave consent for ‘tape’ insertion they did not know they were being implanted with polypropylene mesh”.[3] Patients lacking information – this was a consistent issue concerning patients regarding the three interventions considered by the Review: hormone pregnancy tests, sodium valproate and pelvic mesh implants. One specific example of this is the case of pregnant women taking sodium valproate as an epilepsy treatment without knowing that doing so could harm their unborn child. Despite efforts to make patients aware of this, it remains an issue, with women who are taking sodium valproate as a epilepsy treatment “still becoming pregnant without any knowledge of the risks”, lacking the information to make the decision about whether to continue with this medication.[4] Patients not being involved in decision making – the Review also heard from patients who raised concerns about the failure of informed consent as a result of doctors choosing not to share relevant information with patients for their decision-making. They refer to cases where doctors did not discuss the risks with women taking sodium valproate prior to pregnancies and “gave advice based on their own assumptions, without involving patients in the decision-making process”.[5] Concerns around the absence of informed consent go beyond the procedures focused on in the Review. On the hub, we have featured community discussions and patient accounts of these issues in relation to hysteroscopy procedures, while earlier in the year the Paterson Inquiry highlighted concerns about this, recommending that a short period should be introduced into surgical procedures to allow for patients to provide their consent.[6] How can we ensure informed consent is gained? The Cumberlege Review notes that, since the Montgomery ruling in 2015, there has been a significant increase in patient safety leaflets sharing information on risks of specific treatments, but that the sheer variety of these and differing consent forms can be “bewildering and a major source of confusion”.[7] The Review is supportive of an approach where information is conveyed in a clear and direct way, and where patient decision aids are used in complex conversations to support the consent process.[8] At Patient Safety Learning, we believe it is important that patients are not simply treated as passive participants in the process of their care. Informed consent is vital to respecting the rights of the patient, maintaining trust in the patient-clinician relationship and ensuring safe care. We have identified three calls for action which we believe are needed to tackle the failure of informed consent: All patient information should be co-produced with patients to ensure that it meets patient needs for decision-making. Repositories of information and good practice are put in place so that organisations don’t have to re-invent the wheel but instead can learn from experience. Patient information for medication and medical devices should be reviewed and signed off by the NHS to ensure that it is not solely the responsibility of manufacturers. What are your thoughts on this issue? Have you had an experience where you feel that you have not given informed consent before receiving medical care? Are you a healthcare professional who can share resources for good practice? Let us know in the comments below to ensure our calls for action are informed by your experience and insights. References NHS England, Consent to treatment, Last Accessed 16 July 2020. https://www.nhs.uk/conditions/consent-to-treatment/ UK Supreme Court, Montgomery v Lanarkshire Health Board, 2015. https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf; Lee, Albert. “'Bolam' to 'Montgomery' is result of evolutionary change of medical practice towards 'patient-centred care'.” Postgraduate medical journal vol. 93,1095 (2017): 46-50. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5256237/#R3 The Independent Medicines and Medical Devices Safety Review, First Do No Harm, 8 July 2020. https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf Ibid. Ibid. Campaign Against Painful Hysteroscopy, Patients Stories Essay, September 2018. https://www.hysteroscopyaction.org.uk/wp-content/uploads/2018/10/sept-2018.pdf; The Right Reverend Graham Jones, Report of the Independent Inquiry into the Issues raised by Paterson, 2020. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/863211/issues -raised-by-paterson-independent-inquiry-report-web-accessible.pdf The Independent Medicines and Medical Devices Safety Review, First Do No Harm, 8 July 2020. https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf Ibid.
  6. Content Article
    “The first duty of any health system is to do no harm to those in its care; but I am sorry to say that in too many cases concerning Primodos, sodium valproate and pelvic mesh, our system has failed in its responsibilities. We met with people, more often than not women, whose worlds have been turned upside down… by the pain, anguish and guilt they feel.” Those were the words of Baroness Julia Cumberlege, Chair of the Independent Medicines and Medical Devices Safety Review, as the long-awaited Cumberlege Review was published last month. The report, First Do No Harm, addresses three particularly horrifying women’s health scandals, and describes “a culture of dismissive and arrogant attitudes” where patients’ suffering was frequently dismissed as “women’s issues” or “all in your head”. But the scandals surrounding Primodos, sodium valproate and pelvic mesh are not simply isolated cases of bad practice, and nor do they exist in a vacuum; they’re a symptom of the deeply ingrained conscious and unconscious biases that are built into our medical system. As a freelance journalist specialising in women’s health, I noticed several years ago that there were patterns emerging in much of what I was writing about. Whether I was writing specifically about gynaecological health, or about any other aspect of women’s physical and mental health, certain words and phrases came up a lot, largely in relation to their interactions with healthcare. “My doctor didn’t believe me.” “Dismissed as all in my head.” “Misdiagnosed.” “Drama queen.” “Hypochondriac.” “Over-reacting.” “Just a normal part of being a woman.” And, heartbreakingly: “I thought I was going mad.” Once you start talking to women about this, you realise quite how common these dismissive attitudes are. Women told me about waiting years and years for proper diagnoses and treatments. Many more told me that medical gaslighting had left them feeling isolated and questioning their own sanity, wondering if maybe their pain really was in their head after all. Beyond the overwhelming quantity of anecdotal evidence, there’s also no shortage of research highlighting what’s been dubbed ‘the gender pain gap.’ We know, for example, that women are kept waiting longer in A&E and are less likely than men to be given effective painkillers – but more likely to be given sedatives or anti-anxiety medication. Women also receive worse quality care than men when having a heart attack, and are more likely to die from one as a result. We also know that other biases, including racism, ageism and homophobia, play a part in the way women are treated – like the shocking fact that black women are five times more likely than white women to die during pregnancy and childbirth. In October 2018, I launched Hysterical Women, a feminist health blog dedicated to exploring the biases and dismissive attitudes in women’s healthcare. It’s a platform to curate women’s stories and experiences, as well as engage with other writers, patient advocacy groups and campaigns, clinicians and policy makers about the issues at play. Hysterical Women isn’t anti-clinicians or anti-NHS – for whom I have nothing but the utmost respect and gratitude – although many of the stories I feature are critical of individual attitudes and behaviours. For me, it’s much more about highlighting the deeply ingrained, systemic, cultural problems that run through the entire medical system – from lack of research and funding for women’s health issues, through to medical education, time and resource pressures, and the wide-ranging effects of working in a system that, by and large, views the white male body as the default. Hysterical Women takes its name from ‘hysteria’, a catch-all diagnosis used from 1900 BC until 1980 AD, which has its origins in the idea that pretty much any symptom a woman experienced was caused by the wanderings of her pesky womb. From Hippocrates to Freud, the history of hysteria provides a fascinating insight into the ways women’s mental and physical health have been misunderstood over thousands of years. It’s a history that continues to loom large over the medical profession; a persistent unconscious bias whose whispers can still be heard in phrases highlighted by the Cumberlege Review, like “women’s issues” and “all in your head”. But Hysterical Women is about much more than wombs – in recognition both of the fact that not every woman has one, and that women’s health consists of far more than just periods, reproduction and the menopause. Stories on the blog encompass all areas of health – from acute physical issues like heart attacks, appendicitis, pneumonia and knee injuries, to chronic problems like fibromyalgia, myalgic encephalomyelitis (ME), postural orthostatic tachycardia syndrome (PoTS) and long-term mental illness. It also, of course, covers no end of gynaecological and hormonal issues, but in many ways I’m most fascinated by the gender bias I see in areas of healthcare that have absolutely nothing to do with uteruses, ovaries or vaginas. It all just goes to show how much bigger and broader a problem this is. Of course, doctors, nurses and other healthcare professionals are human, and medicine itself is neither static nor infallible; mistakes and misdiagnoses are made, things get missed, and our knowledge and understanding is constantly evolving. But in a system founded on the principle of “do no harm”, the harm caused by any single one of these individual experiences should be both a tragedy and a learning experience. Collectively, cumulatively, they add up to a devastating cost – both in terms of the quality of life impact for countless women, but also the long-term healthcare cost of being dismissed instead of treated at the earliest opportunity. One woman I interviewed several years ago suffered permanent bladder and bowel damage thanks to the ten-year delay in diagnosing and treating her endometriosis. Other women describe the mistrust and alienation they now feel, which makes them reluctant to seek medical advice or attend routine screening appointments in future, or even prompts them to seek out (potentially dangerous, often untested and unregulated) alternative treatments. At any given time, you only have to skim through the most recent few posts on the blog to understand what a false economy this is. As with all systemic problems, there is no simple, overnight fix to gender bias in medicine. But it begins with listening to women[1] (as NICE specifically advised in its guidance on endometriosis in 2017), acknowledging them as the experts in their own bodies, and taking a more collaborative approach to patient care. Many brilliant clinicians are already working hard to address gender and other inequalities, both in their own practice and within their professional bodies, but there’s still a lot of work to be done. Hysterical Women welcome’s stories from all women (both cis and trans), as well as any trans or non-binary AFAB individuals who have been dismissed, disbelieved or not taken seriously in healthcare settings. For more information on how to contribute, please visit the Hysterical Women blog site. Reference [1] Bosely, S, 2018. The Guardian. 'Listen to women': UK doctors issued with first guidance on endometriosis https://www.theguardian.com/society/2017/sep/06/listen-to-women-uk-doctors-issued-with-first-guidance-on-endometriosis
  7. Content Article
    In our recent blog Analysing the Cumberlege Review; Who should join the dots for patient safety? we identified a number of key patient safety issues which were reflected in the Review’s findings. One theme running throughout the Review was a lack of support for patients after incidents of unsafe care, particularly around patient complaints. Why are complaints important for patient safety? Complaint processes are often viewed in a negative light, with patients and families not being recognised as playing a ‘primary source of learning for safety’.[1] Too often, processes are variable in their quality and are insensitive and adversarial, frustrating patients further and causing additional harm. Review findings The Review reflects on the complexity of the complaints system in health acting as a significant barrier to patients raising concerns, highlighting issues around: 1) Difficulties navigating the system – the Review notes that they have heard from many patients who “have expressed their frustration at the lack of a clear pathway for them to make a complaint or raise concerns about aspects of their care”.[2] They note that the length of time this can take, all while patients are living with complications from their original complaint, results in some patients describing themselves as being “broken” by this experience.[3] 2) Failure to listen – another issue cited was dissatisfaction with the complaints system itself. The Review notes that complainants feel that they are being treated unfairly during the process. It expressed concerns that this could discourage patients from making complaints again, reinforcing a “culture of denial and resistance to acknowledging mistakes”.[4] 3) Time limits – the Review raises the issue that “where there is a pattern of complaints relating to an individual doctor that spans years, these restrictions mean older complaints are not investigated by the GMC”.[5] Investigations into clinical matters by the GMC are limited to the event taking place within five years of the allegation. The Review notes that this may risk prevent exposing “a pattern of poor practice” where complaints relating to an individual doctor may span a number of years.[6] There is a significant amount of literature on complaints in healthcare. Earlier this year, Healthwatch published a report looking at complaints processes in the NHS, finding inconsistent local reporting and a focus on counting complaints rather than demonstrating learning.[7] The Paterson Inquiry in February also highlighted concerns about this, noting that “while there were differences in the way patients complained in the NHS and the independent sector and how they escalated their complaints, the response was inadequate in both sectors”.[8] What needs to be done to improve complaints processes? The Cumberlege Review suggests some specific recommendations around complaints processes, including: Patients across the NHS and private sector must have a clear, well-publicised route to raise their concerns about aspects of their experiences in the healthcare system.[9] All organisations who take complaints from the public should designate a non-executive member of the board to oversee the complaint-handling processes and outcomes, and ensure that appropriate action is taken.[10] The Parliamentary and Health Service Ombudsman (PHSO) are currently working to develop a Complaints Standards Framework to provide a “shared vision for NHS complaint handling”.[11] In their proposals for public consultation, they suggest an effective complaint handling system is one that: promotes a learning and improvement culture positively seeks feedback is thorough and fair gives a fair and accountable decision [12]. At Patient Safety Learning, we concur with these points and think it is vital that we have systems where harm is properly investigated and where learning is applied to prevent future harm. Further to the PHSO’s suggestions, we believe that it is important that learning from complaints processes is shared widely and feeds directly into the actions taken. Organisations should be able to demonstrate how complaints have been acted on, and resulted in, improvements. What are your thoughts on this issue? Are you a patient or member of staff who has had a negative or positive experience of the complaints process. Do you have examples of good practice that we can share? Let us know in the comments below. References 1. Patient Safety Learning, The Patient-Safe Future: A Blueprint For Action, 2019. https://s3-eu-west-1.amazonaws.com/ddme-psl/content/A-Blueprint-for-Action-240619.pdf?mtime=20190701143409 2. The Independent Medicines and Medical Devices Safety Review, First Do No Harm, 8 July 2020. https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf 3. Ibid. 4. Ibid. 5. Ibid. 6. The Independent Medicines and Medical Devices Safety Review, First Do No Harm, 8 July 2020. https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf 7. Healthwatch, Shifting the mindset: A closer look at hospital complaints, January 2020. https://www.healthwatch.co.uk/sites/healthwatch.co.uk/files/20191126%20-%20Shifting%20the%20mindset%20-%20NHS%20complaints%20.pdf 8. The Right Reverend Graham Jones, Report of the Independent Inquiry into the Issues raised by Paterson, 2020. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/863211/issues -raised-by-paterson-independent-inquiry-report-web-accessible.pdf 9. The Independent Medicines and Medical Devices Safety Review, First Do No Harm, 8 July 2020. https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf 10. Ibid. 11. PHSO, Have your say in shaping the future of NHS complaint handing, Last Accessed 17 July 2020. https://www.ombudsman.org.uk/csf 12. PHSO, Complaint Standards Framework: Summary of core expectations for NHS organisations and staff, Last Accessed 17 July 2020. https://www.ombudsman.org.uk/sites/default/files/Complaint_Standards_Framework-Summary_of_core_expectations%20.pdf
  8. Content Article
    Between April 2008 to March 2017, procedure data from the UK NHS confirmed that 100,516 patients had a mid-urethral tape procedure, while only 1195 patients had a non-tape SUI procedure. Although the 2013 national guideline from The National Institute for Health and Care Excellence (NICE) recommended that tape and non-tape SUI procedures be offered equally, 84 mesh tape procedures were performed for every 1 non-tape procedure over the 10-year period. Hundreds of patients recently engaged in litigation on the basis of lack of informed consent, particularly in offering alternatives to the mesh tape option. Little is known, however, about how patients choose among different treatment options for SUI and there are no validated patient decision aids (PDAs) in this context. PDAs have been shown to increase patient knowledge, clarity about their own values and accuracy of risk perceptions regarding various management options. Women considering SUI surgery require up-to-date information on all common and available surgical procedures as well as support in their decision-making, tailored to their values and needs. Agur et al. on behalf of the NHS Ayrshire & Arran Continence Multidisciplinary Team designed and developed a novel SUI surgery patient decision aid (SUI-PDA) to help women in making a choice of treatment based on their own individual values. This study reports the development and validation of SUI-PDA as well as the initial evaluation of its usefulness in clinical practice for women considering SUI surgery.
  9. Content Article
    Recommendations The Government should immediately issue a fulsome apology on behalf of the healthcare system to the families affected by Primodos, sodium valproate and pelvic mesh. The appointment of a Patient Safety Commissioner who would be an independent public leader with a statutory responsibility. The Commissioner would champion the value of listening to patients and promoting users’ perspectives in seeking improvements to patient safety around the use of medicines and medical devices. A new independent Redress Agency for those harmed by medicines and medical devices should be created based on models operating effectively in other countries. The Redress Agency will administer decisions using a non-adversarial process with determinations based on avoidable harm looking at systemic failings, rather than blaming individuals Separate schemes should be set up for each intervention – HPTs, valproate and pelvic mesh – to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim. Networks of specialist centres should be set up to provide comprehensive treatment, care and advice for those affected by implanted mesh; and separately for those adversely affected by medications taken during pregnancy. The Medicines and Healthcare products Regulatory Agency (MHRA) needs substantial revision particularly in relation to adverse event reporting and medical device regulation. It needs to ensure that it engages more with patients and their outcomes. It needs to raise awareness of its public protection roles and to ensure that patients have an integral role in its work. A central patient-identifiable database should be created by collecting key details of the implantation of all devices at the time of the operation. This can then be linked to specifically created registers to research and audit the outcomes both in terms of the device safety and patient reported outcomes measures. Transparency of payments made to clinicians needs to improve. The register of the General Medical Council (GMC) should be expanded to include a list of financial and non-pecuniary interests for all doctors, as well as doctors’ particular clinical interests and their recognised and accredited specialisms. In addition, there should be mandatory reporting for pharmaceutical and medical device industries of payments made to teaching hospitals, research institutions and individual clinicians. The Government should immediately set up a task force to implement this Review’s recommendations. Its first task should be to set out a timeline for their implementation. Response from Patient Safety Learning Patient Safety Learning welcomes the publication of the First Do No Harm report today from the Independent Medicines and Medical Devices Safety Review. The Chair of the review, Baroness Julia Cumberlege, highlighted in this that they found the healthcare system to be "disjointed, siloed, unresponsive and defensive" to the patients effected by these issues. She also noted that: ‘The system is not good enough at spotting trends in practice and outcomes that give rise to safety concerns. Listening to patients is pivotal to that’ The report highlighted some key themes consistent with other major patient safety failures: Patients not being engaged in their care: Lacking the information required to make informed choices, awareness of how to report problems and their experiences not being recognised. Ineffective reporting: Data not being utilised to identify and address patient safety issues. Existing reporting systems not being effective enough to capture this information and share learning widely. Blame culture: Persistent failure to acknowledge when things go wrong for fear of blame, reducing the ability to address threats to patient safety. Patient Safety Learning considers that patient safety is currently treated as one of many priorities to be weighed against each other. We think it is wrong that safety is negotiable. Patient safety must be core to the purpose of healthcare, reflected in everything that it does.
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