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Found 14 results
  1. Event
    until
    North East London Training Hubs (CEPNs) are delighted to invite all local health and care colleagues to this virtual session on unconscious bias. Behavioural and data scientist Dr Pragya Agarwal will present this informative and actionable masterclass that will demystify the meaning of different unconscious biases and supply you with the tools to unlearn yours. A choice of 3 dates are being offered. You will also have the opportunity to attend a smaller interactive facilitated workshops on the subject including looking at case studies and role play. These sessions will be held in February and March 2021 Dr Pragya Agarwal is an award-winning behavioural scientist, a freelance journalist and author. As a Senior Academic in US and UK universities, she has held the prestigious Leverhulme Fellowship, following a PhD from the University of Nottingham. Her publications are on reading lists of leading academic courses across the world. A passionate campaigner for women’s rights, and two-time TEDx speaker herself, Pragya organised the first ever TEDxWoman event in the north of the UK. She regularly appears on panels and has given keynotes around the world. Register
  2. Community Post
    It's #SpeakUpMonth in the #NHS so why isn't the National Guardian Office using the word whistleblowing? After all it was the Francis Review into whistleblowing that led to the recommendation for Speak Up Guardians. I believe that if we don't talk about it openly and use the word 'WHISTLEBLOWING' we will be unable to learn and change. Whistleblowing isn’t a problem to be solved or managed, it’s an opportunity to learn and improve. So many genuine healthcare whistleblowers seem to be excluded from contributing to the debate, and yes not all those who claim to be whistleblowers are genuine. The more we move away for labelling and stereotyping, and look at what's happening from all angles, the more we will learn. Regardless of our position, role or perceived status, we all need to address this much more openly and explicitly, in a spirit of truth and with a genuine desire to learn and change.
  3. Content Article
    In this blog we will focus on several issues where there is a clear overlap between pain and patient safety concerns, inviting further debate and collaboration on this important topic through a series of questions. Consenting to treatment Consenting to treatment is vital to respecting the rights of the patient and ensuring safe care. It is also one area where we see evidence of how patient safety and pain issues can overlap. A recent example of this can be found in the publication of last month’s report of the Independent Medicines and Medical Devices Safety Review, First Do No Harm. This highlighted a number of cases where women were unable to consent to treatment, undergoing pelvic mesh procedures without being aware that mesh would be used.[4][5] Many have since experienced adverse effects of the mesh, including severe and chronic pain, managed now by strong opioid painkillers. While in the above example lack of consent is linked to pain following treatment, there are other cases where patients lack the necessary information regarding pain during a procedure. Women who have undergone outpatient hysteroscopy procedures have highlighted concerns around informed choice, with many given little or no information beforehand about the risk of severe pain. Of those who did experience high levels of pain, some have reported that their doctor continued with the procedure despite their obvious agony, leaving them feeling traumatised and violated. [6-10] These examples go against the legal requirement for patients to be made aware of what a treatment will involve, including the associated risks.[11] They illustrate the relationship that can exist between consent, pain and patient harm. Patient safety points for further discussion: Are there other scenarios we can learn from to understand how consent impacts on pain experience and patient safety? What support do clinicians need to communicate the information in a way that is accessible, comprehensive and patient focussed? Where guidance for clinicians exists[12], why isn’t it being widely used? What can be done to make sure patients feel empowered and supported in halting procedures if the pain becomes unmanageable? Should severe procedural pain be recorded as a Serious Adverse Event? Communication In our report A Blueprint for Action we make clear the importance of engaging patients in patient safety, drawing on evidence that shows that ‘communication between clinicians and patients has a positive impact on health outcomes’.[13] When looking at issues of pain and communication, problems with the latter can often present a barrier to dealing appropriately with a patient’s pain issues. For example, evidence shows that pre-verbal children are far less likely to receive adequate pain control in comparison to their adult or older children counterparts.[14] Their inability to self-report has a direct impact on the level of pain they are likely to have to endure. Poorly managed pain in childhood can cause chronic pain, disability, and distress in adult life.[15] Similarly, there are calls for people with intellectual and developmental disability (IDD) to have their pain better managed, particularly pertinent where self-reporting is not feasible. Researchers have acknowledged the communication barriers faced by patients with IDD and highlight a need for evidence-based, stakeholder-informed methods to be used, in order to assess pain and prevent unnecessary suffering[16]. This raises further questions around disparities in pain relief for patients who may struggle to communicate for other reasons. For example, if being treated in the NHS and where English is not their first language. Patient safety point for further discussion: Can examples be shared where alternative pain assessment tools have been used to meet the needs of patients with communication challenges? Bias and gatekeeping Another overlap between pain and patient safety is when it comes to access to medication and clinicians holding a gatekeeping role in this respect. Here we will look at examples of this in three different health areas: 1) Maternity The pain that women can experience in childbirth is widely recognised. Some report that pain relief was either withheld or not given within a reasonable time when they requested it during labour.[17] There can be different factors that also interact with this, with some women raising concerns around the role that racism or cultural assumptions may play in these circumstances. For example, there is a risk that black women could be denied pain relief because of a common perception that they are stronger and better able to cope.[18-19] Or, that loud vocalisations of pain may be more easily dismissed and wrongly attributed to differences in cultural expression[20], rather than seen as genuine and in need of immediate response. We have also spoken to women who felt that staff were ‘gatekeepers’ to pain relief during their labour, based on their preference leaning towards birthing with no medical intervention. The investigation into patient deaths at Morecambe Bay NHS Foundation Trust maternity and neonatal services found that the presence of such attitudes contributed to unsafe deliveries.[21] The Royal College of Midwives has also faced criticism over the language used in a campaign to encourage expectant mums to give birth without intervention, where vaginal deliveries were referred to as ‘normal births’. The College now uses the term ‘physiological births’. 2) Sickle cell anaemia Bias is evident in several patient groups, particularly in the sickle cell community. Mismanagement of pain in this group is frequent due to the assumptions held by clinicians and healthcare workers.[22] Sickle cell patients may be perceived as hypochondriacs, drug seeking or addicted to pain relief. This often leads to patients waiting long periods without (or with minimal) pain relief and can prevent them from seeking help early, potentially leading to further deterioration.[23] 3) Chronic pain Patients who suffer with chronic pain may also be waiting for long periods without adequate relief, whether attending hospital or seeing a GP. Studies have shown that up to a third of UK adults suffer from chronic pain[24] and, although guidance has been produced,[25-26] there is evidence that clinician assumptions continue. Some, for example, do not accept that Fibromyalgia (a condition that the patient suffers chronic pain) actually exists.[27] Attitudes like this can lead to patients being ignored, dismissed or sent away with minimal intervention. Sadly, for decades patients have been raising concerns around the dismissal, bias and lack of understanding surrounding the management of chronic pain.[28] A recent analysis of tweets from patients, many of whom had chronic pain, showed that harmful doctor-patient communication can impact on diagnostic safety.[29] Patient safety points for further discussion: What training is there for GPs and other clinicians regarding pain management, across different patient groups and demographics? To what extent do assumptions and biases impact how patients experience pain more broadly throughout health and social care? To what extent does institutional racism play a part? Differences in pain experience Research suggests that pain thresholds can vary. Low pain tolerance has been attributed to patients with fibromyalgia, chronic fatigue syndrome[30] and intellectual and developmental disabilities[31]. Studies have also shown that gender[32], ethnicity[33] and previous trauma[34] can all contribute to people experiencing pain differently. With research indicating there are notable differences in pain thresholds, it leads us to question whether all patients have equal access to the pain relief needed to reasonably ease suffering. Patient safety points for further discussion: Are some patients at greater risk of experiencing trauma-inducing levels of pain than others? Do the methods used for determining how much pain relief to give an individual adequately recognise differences in thresholds, across all demographics? We’d like to hear your views In some ways, we end as we began - with an understanding that pain is incredibly complex. The growing concerns around opioid reliance and over-prescription add another dimension to the conversation and will challenge our thinking further. Eliminating pain altogether would undoubtedly have implications for how we are able to listen to our bodies and adjust accordingly to recover or prevent damage. However, there is clearly much to learn in order to manage peoples’ pain needs safely, effectively and without perpetuating inequalities. And we cannot ignore the continued presence of both acute and chronic pain in incidences of patient harm. Patients are describing their personal, and sometimes deeply traumatic, experiences to help key decision-makers identify where change may be needed and prevent future suffering. Their insight and lived-experience will prove crucial to this debate. The limited examples used in this blog are designed to trigger wider conversations about how we may work together to understand pain as a broader patient safety issue. We welcome the input of others who have an interest in this area. Please comment below or get in touch with the Patient Safety Learning team by emailing content@psl.org. References [1] British Pain Society, Useful definitions and glossary. [2] Katz N, The Impact of Pain Management on Quality of Life. Journal of Pain and Symptom Management 2002; 24; 38-47. [3] Twycross A, Forgeron P, Chorne J et al. Pain as the neglected patient safety concern: Five years on. Journal of Child Health Care. 2016; 20 (4): 537-541. [4] The Independent Medicines and Medical Devices Safety Review. First Do No Harm 2020. [5] Patient Safety Learning. Findings of the Cumberlege Review: informed consent. Patient Safety Learning’s the hub 2020. [6] Patient Safety Learning. Painful Hysteroscopy. Patient Safety Learning’s the hub, Community Forum. 2020. [7] Women’s Hour. Hysteroscopy. 2019. [8] Discombe M. Hundreds of women left ‘distressed’ by hysteroscopies. Health Service Journal 2019. [9] Care Opinion. Painful hysteroscopy and biopsy. 2019. [10] Hysteroscopy Action campaign website. [11] The Supreme Court. Montgomery v Lanarkshire Health Board. 2015. [12] Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018. [13] Patient Safety Learning. The Patient-Safe Future: A Blueprint For Action. 2019. [14] Kirkey S. Study suggests more can be done to control pain for children. Ottawa Citizen 2014. [15] Eccleston C, Fisher E, Howard R et al. Delivering transformative action in paediatric pain: a Lancet Child & Adolescent Health Commission 2020. [16] Barney, Chantel C, Andersen et al. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. PAIN Reports 2020; 4; 821. [17] Hill A. Women in labour being refused epidurals, official inquiry finds. The Guardian 2020. [18] Patient Safety Learning. Racial disparities in postnatal mental health: An interview with Sandra Igwe the Founder of The Motherhood Group. Patient Safety Learning’s the hub 2020. [19][19] Patient Safety Learning. Five X More campaign: Improving maternal mortality rates and health outcomes for black women. Patient Safety Learning’s the hub 2020. [20] Wyatt R. Pain and Ethnicity. Virtual Mentor. 2013; 15(5); 449-454. [21] Kirkup B. The Report of the Morcambe Bay Investigation. 2015. [22] Smith-Wynter L, van den Akker O. Patient perceptions of crisis pain management in sickle cell disease: a cross-cultural study. NT Research. 2000;5(3):204-213. [23] Hall S. “People with Sickle Cell are seen as hypochondriacs or drug addicts. Even a nine-year-old has to scream to get the care they need”. Picker. [24] NICE. Chronic pain: assessment and management. Guideline scope. 2018. [25] NICE. Analgesia - mild-to-moderate pain. Accessed 2020. [26] NICE. Chronic pain: assessment and management (in development). Page accessed 2020. [27] Häuser W, Fitzcharles MA. Facts and myths pertaining to fibromyalgia. Dialogues Clin Neurosci. 2018; 20 (1): 53-62. [28] Rehmeyer J. Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back. Stat News. 2016. [29] Sharma AE, Mann Z, Cherian R et al. Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis. J Med Internet Res 2020; 22 (10): e17595 [30] Dellwo A. Pain Threshold and Tolerance in Fibromyalgia and CFS. Verywell Health. 2020. [31] Barney, Chantel C, Andersen et al. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. PAIN Reports: 2020; 5 (4); 821 [32] Mogil J, Bailey A. Chapter 9 - Sex and gender differences in pain and analgesia. Progress in Brain Research 2010; 186;-157. [33] Wyatt R. Pain and Ethnicity. Virtual Mentor. 2013; 15(5); 449-454. [34] Mostoufi S, Godfrey KM, Ahumada SM, et al. Pain sensitivity in posttraumatic stress disorder and other anxiety disorders: a preliminary case control study. Ann Gen Psychiatry 2014; 13 (1): 31.
  4. Event
    Join clinical experts, thought leaders, and advocates for a collaborative discussion on the issues of health disparities, structural racism, and medicine as they examine specific dermatologic diseases in a series of four free and open educational webinars from the Harvard Medical School. Structural racism and racial bias in medicine: Wednesday, October 28, 1:00-2:15 PM ET Hair disorders in people of colour: Thursday, November 12, 1:00-2:15 PM ET Pigmentary disorders and keloids: Wednesday, November 18, 1:00-2:15 PM ET COVID-19 Comorbidities and cutaneous manifestations of systemic diseases in adults and children: Wednesday, December 2, 1:00-2:15 PM ET Implicit bias and structural racism play a central role in the development of healthcare disparities. One of the critically important areas in medicine is the misdiagnosis of disease in people with darker skin types due to implicit bias and the lack of awareness among physicians in recogniszing the disease pattern. Clinicians in primary care, emergency medicine, hospital medicine, surgery, pediatrics, and other medical specialties can deliver improved care if they can recognize and diagnose medical conditions based on skin findings in patients of color. This four-part series aims to improve diagnosis in people of color, describe pathogenesis and treatment of diseases, develop cultural competency, and impact change in health care policy so more is done to reduce racial bias in medical practice and medical research. Providing this education, in turn, will ultimately help reduce health disparities and improve the lives of underrepresented minority populations. Register for one event or all four.
  5. 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.
  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
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