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Found 10 results
  1. News Article
    As more people suffer lasting symptoms from Covid including fatigue, ME patient advocates fear they will get bad advice, Based on current estimates, about 10% of COVID-19 patients develop lasting symptoms, one of the most common being fatigue. The underlying mechanism is still unclear, but possible explanations include reduced oxygen supply to tissues caused by heart or lung damage, or muscle weakness from prolonged bed rest. However, some doctors are increasingly concerned about the overlap between long Covid and another largely virus-triggered illness: “It’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS),” said the US’s top public health official, Dr Anthony Fauci, in July. “They just don’t get back to normal energy or normal feeling of good health.” Like people with ME/CFS, many long-Covid patients report headaches, brain fog, sleep problems, a racing heart, joint and muscle pain and fatigue. Some also experience a relapse of fever, muscle pain and exhaustion, known as “post-exertional malaise”, if they exercise beyond their capabilities. “There are so many similarities between long Covid and ME/CFS it leads me to believe the underlying pathology is probably the same – except that long Covid is presenting as an epidemic, whereas ME/CFS has presented in a very sporadic way, and by no means in such large numbers in such a short space of time,” said Dr William Weir, a consultant in infectious diseases with a special interest in ME. Read full story Source: The Guardian, 19 November 2020
  2. 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.
  3. News Article
    A controversial exercise technique used to manage chronic fatigue syndrome is no longer being recommended by National Institute for Health and Care Excellence (Nice). The decision to stop recommending graded exercise therapy (GET) – which involves incremental increases in physical activity to gradually build up tolerance – represents a crucial win for patient advocates who have long said the practice causes more harm than good. Patient groups have argued that the use of exercise therapy suggests that those with chronic fatigue syndrome (also known as ME) have no underlying physical problem but are suffering symptoms due to inactivity. “We have been so widely dismissed and had our suffering at the hands of this condition constantly diminished by the inappropriate and damaging guidance/notion that we can simply exercise or think our way out of a physical illness none of us asked for nor deserve,” said ME patient Glen Buchanan. Chronic fatigue syndrome is thought to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds annually. One in four are so severely affected they are unable to leave the house and, frequently, even their bed. Read full story Source: The Guardian, 10 November 2020
  4. Content Article
    The ME Association has produced a leaflet which includes guidance on the following: what is PVF and PVFS? what are the symptoms of PVF and PVFS? PVFS and possible progression to ME/CFS management of PVF and PVFS convalescence activity management mental wellbeing nutrition sleep work and education finances drug treatments when to check with your GP research into PVF and PVFS further information.
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