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Found 157 results
  1. News Article
    An 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
  2. News Article
    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
  3. News Article
    As a teenager, Kelly Moran was incredibly sporty: she loved to run and went to dancing lessons four times a week. But by the time she hit 29, she could barely walk or even drive, no longer able to do all the activities she once enjoyed. She had pain radiating into her legs. Her pain was repeatedly dismissed by doctors, who told her it was in her head. She moved back to her parents’ house in Manchester and left her job. She decided to seek treatment privately and was told she had endometriosis. Soon, with the right treatment, her life improved. Kelly is among dozens of women who got in touch to share their stories with the Guardian on the topic of women’s pain. Women are almost twice as likely to be prescribed powerful and potentially addictive opiate painkillers than men, a Guardian analysis shows. Data from the NHS Business Services Authority, which deals with prescription services in England, shows a large disparity in the number of women being given these drugs compared with men, with 761,641 women receiving painkiller prescriptions compared with 443,414 men, or 1.7 times, and the pattern is similar across broad age categories. The women who reached out said they felt that they were often “fobbed off” with painkillers when their problems required medical investigation. Read full story Source: The Guardian, 16 February 2021
  4. News Article
    A 23-year-old woman who begged doctors to remove her womb to relieve chronic pain says the surgery is being refused due to her age and childless status. Hannah Lockhart has endometriosis, a condition that can cause debilitating pain, heavy periods and infertility. Although she has always wanted her own children, Hannah says her daily pain is now so severe she wants a hysterectomy. "It's heartbreaking that just because I'm so young I have to keep suffering," she told the BBC's Evening Extra. Ms Lockhart, from Bangor in County Down, has been in hospital seven times in the past year because of crippling pain from endometriosis. "Every single day I'm taking morphine, I'm taking different tablets for nerves to try and stop the pain and nothing works," she said. Read full story Source: BBC News, 14 April 2021
  5. News Article
    New guidance from health officials on the treatment of chronic pain could be devastating for women already struggling to get doctors to take their pain seriously, write Sarah Graham, The guidelines, published last week by the National Institute for Health and Care Excellence (NICE), say that patients suffering from chronic pain that has no known underlying cause (known as chronic primary pain) should not be prescribed painkillers. Instead, it suggests, these patients should be offered exercise, antidepressants, talking therapies and acupuncture. This has huge implications for the future treatment of anyone living with unexplained chronic pain – the majority of whom are women – and runs the risk of patients being viewed as hysterical until proven otherwise. Read full story Source: iNews, 7 April 2021
  6. News Article
    Doctors in pain management have raised concerns about the National Institute of Health and Care Excellence’s guidance on treating chronic primary pain, which they said do not reflect clinical practice or current evidence. Patients could be left in “despair,” said the British Pain Society, because of the recommendation that the only drugs that doctors should prescribe are certain antidepressants. Commonly prescribed drugs, including paracetamol, non-steroidal anti-inflammatory drugs, benzodiazepines, and opioids, should not be used to treat chronic primary pain, said NICE. Instead patients should be offered exercise programmes, therapy, and acupuncture. Read full story (paywalled) Source: BMJ, 9 April 2021
  7. News Article
    Unpaid carers looking after terminally ill friends and relatives during the pandemic struggled to access pain relief, with some patients dying in unnecessary pain, a survey has found. The survey of 995 unpaid carers by Marie Curie also found people had difficulties getting personal care and respite nursing for loved ones. Figures show the number of people dying at home rose by 42% in the past year. Nearly two-thirds of carers surveyed by the charity said their loved one did not get all the pain relief they needed when they were dying. Susan Lowe, from Solihull, cared for her mother Sheila before she died with bowel cancer in April last year, aged 74. She said caring for her mum during lockdown was hard as "the system was just under so much pressure that we had to manage largely on our own". The public health worker says she struggled to get the right pain relief medication for her mother in her final weeks and spent hours travelling to different chemists. Susan, 50, told the BBC: "My biggest regret is that my mum died in pain - more pain than she needed to be. She really wanted to be comfortable at the end. She knew she was dying." "What she really wanted - and this is what she was assured would happen - was to be comfortable. She was told she would get the drugs that she needed for it to be as bearable as possible... I remember breaking down in tears a couple of times in the pharmacy when I was told the medication mum needed wasn't in stock." Read full story Source: BBC News, 8 April 2021
  8. News Article
    People suffering from chronic pain that has no known cause should not be prescribed painkillers, the medicines watchdog has announced, recommending such patients be offered exercise, talking therapies and acupuncture instead. In a major change of pain treatment policy, the National Institute for health and Care Excellence (NICE) say that in future, doctors should advise sufferers to use physical and psychological therapies rather than analgesics to manage their pain. Painkillers such as aspirin 'do more harm than good' for chronic primary pain Medical teams can also consider prescribing antidepressants, the government health advisers suggest. NICE’s new guidance potentially affects the way many hundreds of thousands of people in England and Wales tackle their condition because between 1% and 6% of the population of England is estimated to have chronic primary pain. Read full story Source: The Guardian, 7 April 2021
  9. Content Article
    Can you tell us a bit about your own experience of having a copper IUD fitted? In a word - horrific. I am not able to use hormonal contraceptives, so for me the copper IUD is a good solution, plus it lasts for 10 years which is a bonus. However, the insertion of the IUD was excruciatingly painful. I had asked my GP for some pain relief beforehand, but he told me that ‘paracetamol would be enough’. That absolutely did not turn out to be the case for me. The fitting took three attempts, each one more painful than the last. Apparently, I have a tilted cervix which makes insertion more difficult, but no smear tests or doctors notes have ever revealed anything like that to me in the past. In order to get the angle right I had to lie on my side with my leg cocked upwards for a significant amount of time. I have never felt pain like it. Nothing can describe that deep pain as the ‘sound’ (a medical instrument used to probe), hits your uterus. Or the invasive and violating feeling of having your cervix clamped. I was not prepared for it and was shocked at the noises coming from my mouth during the procedure. I was in so much pain that I did not recognise my own voice. It was truly awful. Shortly after your experience, you launched a public survey, what fuelled you to do this? I mentioned my experience to my friends and a few of them also said they had had terrible experiences. That’s a small group of people all reporting terrible pain for a procedure that the NHS describes as potentially ‘uncomfortable’. So, before I started shouting about it, I thought I’d better collect some data to see if my friends and I were anomalies. It turns out we weren’t, not by a long way. What were women telling you in their survey responses? The survey questions focused on pain experience, the pain relief offered and how well-informed people felt they had been. I also included a ‘free text’ section for people to share whatever they felt was important. The stories were unbelievably depressing. Almost 1500 women telling me how much pain they had experienced. I’ve heard people say that it was worse than any vaginal childbirth they went through, or the time they broke a bone or punctured a lung. That’s pretty compelling. There was story upon story of medical professionals, dismissing their pain and making them feel they were being over dramatic about it. What also struck me was the number of women who said they had thought that they were the only one this has happened to, and so didn’t say anything. Or that they had felt an urge to say something, but just wanted to put the whole ordeal out of their minds. That’s a real trauma response and very scary to hear that women are leaving GP office procedures with that experience. What did your data tell you? In short, that we have a problem here. 93% of respondents reported experiencing pain during their IUD fitting, with more than 25% rating their pain as ‘almost unbearable’ or ‘excruciating’ (the highest levels on an 11 point scale) 52.88% reported not being advised to take any pain relief 71.18% said they did not feel adequately informed of what to expect. 95.33% said that they think that better pain relief should be offered. This data tells me that women are not being routinely consulted about this sort of procedure, or that they are not being listened to when they report severe pain. It also tells me that we have a blind spot in the medical profession for women’s pain. There seems to be a culture that the pain and suffering is worth it if the end justifies the means. But surely, we can have the end result with the means being properly managed for pain? Why should women suffer unnecessarily? What do you think needs to happen to improve care and patient experience? If you’re going to put something up into a uterus through a cervix, make sure that everyone is fully informed of what it could be like and that the appropriate level of relief for the individual patient is administered. There needs to be a thorough explanation of the procedure so that women can make informed choices. You can currently choose to accept the risks of the procedure, but at no point are you forewarned of the potential for terrible pain. If there was proper data that told us that X% of women suffered an excruciating amount of pain having the procedure done without pain relief, then women could choose to re-book when pain relief was involved, or to proceed fully informed. Many women say they felt violated by the procedure. I for one most certainly did not consent to be in that much pain. I think that goes a long way to explain the emotional trauma that so many women experience from this procedure. There also needs to be more pain relief available. The procedure should be treated with the gravitas it deserves; aligned with things like colonoscopies in terms of the analgesics and relief offered. And women MUST be believed when they say they are in pain. This gaslighting of women’s pain has got to end. What's next for your campaigning in this area? I’ve set up a petition calling for better pain relief for IUD insertion and removal. Please sign it and help draw attention to these issues. People also keep reaching out to me and offering help which is amazing. I’m working with Patient Safety Learning, clinicians and journalists in this field to raise awareness of my data among the relevant audiences. Caroline Criado Perez (author of Invisible Women: Exposing Data Bias in a World Designed for Men) has been fantastic in pushing for participation in the survey and petition. I’ve even had a medical manufacturer contact me, who are making a device that is supposed to cause less pain upon insertion to tell me about what they do. I’m just going to keep pushing until we see change and improvement for women. Is there anything else you'd like to add? I have been overwhelmed and brought to tears by the stories women have told me. And I feel privileged that they have felt safe enough to share them with me. But I also now feel a responsibility to do something about this situation. So that is what I am doing! Complete the survey here Sign the petition Follow Lucy Cohen on Twitter: @LucyMazuma Have you had an IUD fitted? If you’ve had an IUD fitted and would like to share your experience, please visit our community forum here and tell us how you found the procedure. Are you a healthcare professional involved in IUD fittings or removals? Can you share your insights on the issue? What are the challenges for healthcare workers trying to manage patient pain? Are there any examples of good practice or resources you can share to help drive improvements? Please visit our community forum here and share your thoughts, or contact us at content@pslhub.org Related hub content Is pain a patient safety issue? The normalisation of women’s pain Dangerous exclusions: The risk to patient safety of sex and gender bias How close are we to closing the gender pain gap? Through the hysteroscope: Reflections of a gynaecologist Minister acknowledges patients’ concerns about painful hysteroscopies; but will action be taken?
  10. News Article
    NHS clinics were still seeing just two-thirds of the number of chronic pain patients they normally would by the end of last year, with some patients having waited a year or more. In Ayrshire and Arran, 94 of the 112 chronic pain patients seen between October and December – equivalent to nearly 84% – had been on the waiting list for their first appointment for 52 weeks or longer. Only nine were seen within the 18-week target. This was by far the worst performance for any health board in Scotland. Pain relief clinics across NHS Scotland were paused for four months at the beginning of the pandemic, leading to reports that some patients with problems such as nerve damage and arthritis were paying thousands of pounds to travel to private facilities in England for medical infusions or injections to ease their symptoms. In a statement at the end of last year, Joanne Edwards, the director of acute service at NHS Ayrshire and Arran, apologised for the delays, saying the coronavirus pandemic "has had a significant impact on the capacity of the chronic pain service". Ms Edwards said the health board was increasing the number of face to face and telephone clinics that the chronic pain team can undertake, adding that an "enhanced clinical review" of the waiting list was also being carried out to prioritise patients for appointment based on clinical need. Read full story Source: The Herald, 10 March 2021
  11. News Article
    New stats from Endometriosis UK this week for Endometriosis Awareness Month reveal that 62% of women (aged 16-54) would put off going to a doctor with symptoms of endometriosis. Reasons include they don’t think it’s serious enough to bother a doctor with, they’d be embarrassed, they don’t think they’d be taken seriously, or they think symptoms including painful periods are normal. This statistic rises to 80% of 16-24-year-olds. 1.5 million UK women are currently living with endometriosis, with average diagnosis time standing at an unacceptable 8 years Endometriosis UK says it is vital that Governments, society, the NHS and workplaces wake-up and recognise the symptoms and impact endometriosis can have, and afford those with the condition the support and access to treatment they need to manage their symptoms. Commenting on the new research, Emma Cox, CEO of Endometriosis UK said: “Endometriosis is a long-term chronic health condition affecting 1.5 million in the UK, yet it still all too often considered a taboo or not important due to links with the menstrual cycle. Symptoms including chronic pelvic pain, painful periods, painful bladder and bowel movements, and infertility, can have a major, life-long impact, physically and mentally. But far too many find their symptoms are not believed nor taken seriously." “Myths such as “chronic period pain is normal” or “you must have a low pain threshold” manifesting in society, workplaces, schools, and even healthcare settings contribute to those experiencing symptoms being put off from seeking medical advice and contribute to diagnosis taking on average a shocking 8 years. “The impact of delayed diagnosis on people’s physical and mental health can’t be overstated. If undiagnosed, the disease may progress, and negatively impact people’s careers, education, relationships and all aspects of their life.” Read full story Source: Endometriosis UK, 1 March 2021
  12. News Article
    More women may suffer pain due to being conscious while undergoing caesareans or other pregnancy-related surgery under general anaesthetic than realised, a troubling new study has found. The report, conducted by medical journal Anaesthesia, found being awake while having a caesarean is far more common than it is with other types of surgery. Researchers discovered that one in 256 women going through pregnancy-related surgery are aware of what was going on — a far higher proportion than the one in every 19,000 identified in a previous national audit. If a patient is conscious at some point while under general anaesthetic, they may be able to recall events from the surgery such as pain or the sensation of being trapped, the researchers said. While the experiences generally only last for a few seconds or minutes, anaesthetists remain highly concerned. Women also felt tugging, stitching, feelings of dissociation and not being able to breathe - with some suffering long-term psychological damage that often involved characteristics of post-traumatic stress disorder. Read full story Source: The Independent, 13 January 2021
  13. News Article
    Women are undergoing “painful and distressing” diagnostic tests as doctors use the COVID-19 pandemic as an excuse not to offer them their choice of pain relief, HSJ has been told. At least 70 women who have had hysteroscopies this year in English NHS hospitals said they were left in extreme pain following the procedures, with many suffering trauma for several days, according to a survey by the Campaign Against Painful Hysteroscopies group. Some women claimed doctors used COVID-19 as an “excuse” not to offer sedation or general anaesthetic. Others said they were offered an inpatient appointment with general anaesthetic, but were also told it would be a long wait and would likely be cancelled due to covid pressures. Women also said they were told an outpatient procedure would reduce the time spent in hospital and consequently reduce the risk of contracting covid. The only pain relief on offer was often just ibuprofen and some women said facilities like recovery rooms were unavailable. The vast majority of the women surveyed — more than 90% — said they were traumatised for a day or longer by the pain from the procedure, A RCOG spokeswoman said: “We are concerned to hear that women are going through painful and distressing hysteroscopy procedures and that they feel COVID-19 is being used as an excuse not to offer a choice of anaesthetic." “The covid-19 pandemic has put incredible strain on the health services, and the risk of transmission of the virus has meant they’ve had to adapt their procedures. Whilst all women should be offered a choice of anaesthesia and treatment settings for hysteroscopic procedures, an outpatient setting avoids hospital admission and reduces the risk of exposure to the virus." “The RCOG guidance on this is very clear — all pain relief options should be discussed with women, as well as the risks and benefits of each. Women should be given the choice of a local or general anaesthetic. If the procedure is still too painful, no matter what anaesthetic options are chosen, it must be stopped and a further discussion of pain relief options should then take place. It’s vital that women are listened to and their choice is fully supported.” Read full story Source: HSJ, 21 December 2020
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