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Content Article
On Wednesday 26 January, the All-Party Parliamentary Group for First Do No Harm (APPG FDNH) held a virtual public meeting on the topic of redress schemes for those who have suffered avoidable harm linked to pelvic mesh, sodium valproate and Primodos. This meeting was an opportunity to hear from representatives of various patient groups about what victims need and what they are missing from current support mechanisms. The meeting heard from Kath Sansom, founder of the Sling the Mesh campaign. Attached is the speech she presented and results from the Sling the Mesh survey. View the recording of the public meeting -
News Article
Women report waiting longer for operations and appointments in pandemic
Patient Safety Learning posted a news article in News
Women are being forced to wait longer for operations and healthcare appointments in the wake of the pandemic, according to a new report. Research carried out by the Care Quality Commission, England’s regulator of health and social care, found 53% of women experienced longer waiting times for appointments or healthcare procedures during the Covid crisis. The report also found 3 in 10 women experienced appointment cancellations. More women report grappling with these issues than men – with some 44% of men saying they have experienced longer waiting times for appointments or procedures. Helena Mckeown, a GP who previously specialised in women’s health at the British Medical Association (BMA), told The Independent she is not surprised by the findings. "Our world is full of sexism and we know of other examples of sexism and biases in healthcare. Some of them are racial biases. To stop unconscious biases, they need to be recognised and addressed. Ms Mckeown, one of the directors of the Menopause Expert Group, a non-profit which provides education about menopause, said female patients are treated differently to men. She added: “We need to make sure we are not taking women saying they are in pain differently to men saying they are in pain. It is really important that we address this problem of women waiting longer for operations and appointments.” Read full story Source: The Independent, 22 January 2022 -
Content ArticleThis report by Muscular Dystrophy UK looks at the impact of the Covid-19 pandemic on people living with muscle-wasting conditions, according to the results of a survey conducted in Scotland. It is estimated that more than 6,000 people in Scotland live with a muscle-wasting condition and require access to a range of specialist appointments and clinicians to meet their complex care needs.
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Content Article
In this personal account, hub member Sophie talks about the trauma she experienced after a painful contraceptive device (IUD) fitting, and the impact this has had on her subsequent experience of medical procedures. She argues that damaging narratives around female pain cause harm to patients in multiple ways and have consequences that reach far beyond the initial experience of pain.- Posted
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Content ArticleKath Sansom’s surgery changed her life forever – and motived her to lobby for its halt.
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Content ArticleThis study in Pain Research and Management reviewed available literature about gender bias in the treatment of pain and gendered norms towards patients with chronic pain. The authors found that gendered norms about men and women with pain are present in research from different scientific fields. They highlight that awareness of the issue can help counteract gender bias in healthcare and support healthcare professionals to provide more equitable care.
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News ArticleDying patients are going without care in their own homes because of a collapse in community nursing services, new data shared with The Independent reveals. Across England a third of district nurses say they are now being forced to delay visits to end of life care patients because of surging demand and a lack of staff. This is up from just 2% in 2015. The situation means some patients may have to wait for essential care and pain medication to keep them comfortable. Other care being delayed includes patients with pressure ulcers, wounds which need treating and patients needing blocked catheters replaced. More than half of district nurses said they no longer have the capacity to do patient assessments and psychological care, in an investigation into the service. Professor Alison Leary, director of the International Community Nursing Observatory, said her study showed the country was “sleepwalking into a disaster,” with patients at real risk of harm. She said the situation was now so bad that nurses were being driven out of their jobs by what she called the “moral distress” they were suffering at not being able to provide the care they knew they should. “People are at the end of their tether. District nurses are reporting having to defer work much more often than they did two years ago. What they are telling us is that the workload is too high. This is care that people don’t have time to do.” Read full story Source: The Independent, 29 November 2021
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Content ArticleWhen Joe Fassler's wife was struck by mysterious, debilitating symptoms, their trip to the ER revealed the sexism inherent in emergency treatment.
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News Article
NHS waiting list patients ask if life is worth living
Patient Safety Learning posted a news article in News
Huge waiting lists have left patients questioning whether their lives are worth living, a surgeon has warned. Paul Williams, an orthopaedic surgeon at Neath Port Talbot Hospital, dubbed the effect of long delays on mental and physical health "horrific". A health think-tank said waiting times were the biggest challenge the NHS in Wales has ever faced. The Welsh government said it wanted to "radically transform" how healthcare was delivered. Mr Williams said: "To be living with pain from an arthritic joint is terrible. "We sent out a questionnaire recently and many of the patients have actually replied that they're questioning if their life is worth living because of the pain they're in." The latest figures for the Welsh NHS showed another record high for those waiting for hospital treatment. The number of patients waiting more than 36 weeks has grown from 25,634 in February 2020 to 243,674 by August 2021. The longest waits included 56,279 people who needed orthopaedic or trauma treatment. Read full story Source: BBC News, 3 November 2021 -
Content ArticleNICE has published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men. The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
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News ArticleA drug developed over 20 years ago to treat cancer could help patients living with crippling pain, according to new research. Kenpaullone switches on a gene that douses chronic inflammation, say scientists. Experiments on mice and humans found it was remarkably successful at alleviating nerve injury and bone tumour symptoms. The US team is hopeful clinical trials will see equally successful results in humans suffering a host of conditions. Up to 8 million people in the UK live with chronic pain. Major causes include arthritis and spine damage. Lead author Professor Wolfgang Liedtke said: “New drugs and other therapies against chronic pain need to be safe, i.e., the fewer side effects the better. “It’s especially important they be non-addictive and non-sedative, while being effective against nerve injury pain and cancer pain, preferably with a minimal time to official approval." Read full story Source: The Independent, 27 October 2021
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News ArticlePeople are dying at home without the correct nursing support or pain relief because of staff shortages, according to the end-of-life charity Marie Curie. One in three nurses, responding to a survey by the charity and Nursing Standard, say a lack of staff is the main challenge providing quality care to dying people. More than half of the nurses said they feel the standard of care has deteriorated during the coronavirus pandemic. Some 548 nursing staff across acute and community settings in the UK completed the survey in September. They raise concerns about the increased number of people dying at home and insufficient numbers of community nurses to support these people and their families. One nurse who responded to the survey said: "If more [people] are dying at home then there is a huge pressure on local district nursing teams which struggle with staffing as it is." Julie Pearce, chief nurse and executive director of quality and caring services at Marie Curie, said: "The pandemic has accelerated change across many care settings. "More people are dying at home and staffing to support this shift isn't there. "The data shows a hidden crisis happening behind closed doors and people dying without access to pain relief or the dignity they deserve." Read full story Source: The Independent, 27 October 2021
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News ArticleAn innovative type of medicine - called gene silencing - is set to be used on the NHS for people who live in crippling pain. The drug treats acute intermittent porphyria, which runs in families and can leave people unable to work or have a normal life. Clinical trials have shown severe symptoms were cut by 74% with the drug. While porphyria is rare, experts say the field of gene silencing has the potential to revolutionise medicine. Sisters Liz Gill and Sue Burrell have both had their lives turned around by gene silencing. Before treatment, Liz remembers the trauma of living in "total pain" and, at its worst, she spent two years paralysed in hospital. Younger sister Sue says she "lost it all overnight" when she was suddenly in and out of hospital. Both became used to taking potent opioid painkillers on a daily basis. But even morphine could not block the pain during a severe attack that needed hospital treatment. Gene silencing gets to the root-cause of the sisters' disease rather than just managing their symptoms. Their porphyria leads to a build-up of toxic proteins in the body, that cause the physical pain. Gene silencing "mutes" a set of genetic instructions to block that protein production. Both had been taking the therapy as part of a clinical trial and are still getting monthly injections. The National Institute for Health and Clinical Excellence (NICE), which approves drugs for use in England, said the therapy "would improve people's quality of life" and was "value for money". Read full story Source: BBC News, 21 October 2021
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Content ArticleChronic pain patients are often dismissed and told the pain is in their head. For World Mental Health Day, Glasgow Live reporter Sophie Buchan shares her first-hand experience of gaslighting. Gaslighting refers to a form of emotional abuse which involves "manipulating someone by psychological means into doubting their own sanity". This can also happen in medical settings - referred to as medical gaslighting. This is used to describe medical practitioners who blame a patient's symptoms on psychological factors, or deny a patient's illness, for example, doubting their pain because they "don't look sick".
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Content Article
Top 21 Chronic Pain & Illness Blogs (20 August 2021)
Patient-Safety-Learning posted an article in Patient stories
This article lists some of the top chronic pain and illness blogs on the internet, with a short description of each one.- Posted
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News Article
Opioid pain relief 'soared during pandemic' for some patients
Patient Safety Learning posted a news article in News
The use of opioids for pain relief soared during the pandemic as some patients waited longer for surgery, according to new research. The University of Aberdeen team focused on more than 450 patients due to have hip or knee replacement surgery. They said waiting times for these procedures increased by an average of 90 days and that the numbers of patients using opioids while waiting for surgery increased by 40% compared to pre-pandemic levels. The research, published in the BMJ Quality and Safety, looked at data collected from 452 NHS patients from the north east of Scotland. The university's Luke Farrow, who led the research, said alternative ways of managing severe arthritis pain needed to be found "urgently" for those waiting for this kind of surgery. Read full story Source: BBC News, 15 November 2021 -
Content ArticleDespite the effectiveness of total knee arthroplasty (TKA; knee replacement surgery), patients often have lingering pain and dysfunction. Recent studies have raised concerns that preoperative mental health may negatively affect outcomes after TKA. The primary aim of this study from Melnic et al. investigates the relationship between patient-reported mental health and postoperative physical function following TKA. The study found that poor mental health should not be a contraindication for performing TKA. For patients with the lowest mental health scores, physicians should account for the possibility that physical function scores may deteriorate a year after surgery. Tighter follow-up guidelines, more frequent physical therapy visits, or treatment for mental health issues may be considered to counter such deterioration.
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Content ArticleThe rise in opioid overdoses warrants a review of the symptoms of akathisia writes Russell Copelan.
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Content ArticleIn this article in the Pharmaceutical Journal, Carolyn Wickware asks if liquid morphine should be reclassified. She cites research that Oramorph or oral morphine sulphate solution was directly linked to the cause of death in 13 reports since 2013.
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Content ArticleThis article discusses how fibromyalgia is a poorly understood condition, and until now, was considered to originate in the brain, however, new research considers that the condition may actually be associated with the body's immune system. New findings published in the Journal of Clinical Investigation may help pave the way for more effective treatments for the millions of people affected by fibromyalgia.
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Content Article
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More and more women are coming forward to share their stories of a painful IUD procedure. In this blog for the BMJ Opinion, Stephanie O’Donohue (Content and Engagement Manager for Patient Safety Learning) argues that healthcare services need to get better at recording these experiences. The ripples of trauma caused by severe pain during IUD procedures If you have had an IUD fitted and would like to share your experience, please visit our community forum and share your views. Related reading The pain of my IUD fitting was horrific…and I’m not alone The normalisation of women’s pain Through the hysteroscope: Reflections of a gynaecologist Improving hysteroscopy safety (Patient Safety Learning, November 2020) -
Content ArticleThis study, published in the Journal of family planning and reproductive health care, aimed to determine the prevalence of and reasons for and against the use of local anaesthesia (LA) for IUD insertion. The results suggest that more UK health professionals need to routinely discuss pain relief and offer this to their patients prior to IUD insertion as part of the care pathway for patients who choose to use intrauterine contraception.
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Content ArticleThere have been many testimonials from patients who have experienced high levels of pain during intrauterine device (IUD) insertion. This has gained media attention and led to calls for better pain management options and informed consent processes. This study, published in Contraception, investigated if providers accurately assess pain during IUD insertion. Authors concluded that providers underestimate pain during IUD insertion.
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Content Article
Lucy Cohen recently had a contraceptive device (IUD) fitted, during which she suffered extremely high levels of pain. Following her experience, she decided to launch a survey to understand how others had found the procedure. In this interview, Lucy shares her findings and calls for better pain management and improved consent processes, in order to reduce avoidable harm. -
Content ArticleNICE guidance on the management of chronic pain no longer recommends the initiation of many medications (e.g. NSAID’s, gabapentinoids etc) for primary chronic pain. However, there are many patients in the community who are already using these medications and it is important that when implementing this guideline, the recommendations are not used out of context. This joint statement aims to provide information that will help doctors and patients when reviewing medications.
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