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Katharine Tylko

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Everything posted by Katharine Tylko

  1. Community Post
    Thank you @HelenH for the kind words. Am so sorry that despite all the campaigning by Patient Safety Learning plus the Campaign Against Painful Hysteroscopy this scandal of excruciatingly painful gynae procedures continues. There's hope on the horizon: Senior gynaecologist Dr Gail Busby has changed her practice to ensure all hysteroscopy patients are offered from a general anaesthetic from the word go. Dr Busby has produced a 2 hour webinar in which a Vice President of the Royal College of Anaesthetists - Dr Helgi Johannsson - outlines (31 minutes in) how consultant gynaecologists could easily be taught to adminster midazolam + fentanyl as 'light IV sedation with analgesia' for hysteroscopy, in the same way that gastro-intestinal consultants routinely offer NHS patients IV sedation for colonoscopy/gastroscopy. Here's the webinar: Meanwhile, please if you'd like to join the closed Facebook Action/Support group of the Campaign against Painful Hysteroscopy please send a FB friend request to Katharine Tylko (not a medic, just an admin) and I'll add you to the group.
  2. Content Article Comment
    Excellent article Kath Sansom! The same tokenism applies to hysteroscopy. Womb endoscopy continues to be hideously painful and traumatic for 1 in 3 because the NHS, the Royal College of Obstetrics & Gynaecology and its little sister the BSGE, keep patients with actual lived experience of painful hysteroscopy out of meetings, consultations and research. The hysteroscopy establishment prefers to silence the whistleblowers and pretend that women aren't daily screaming in pain during brutal and medieval endoscopy performed WITHOUT ANAESTHETIC. The British Society for Gynaecological Endoscopy REFUSES (under FOIA) to publish the pain scores from its 'bespoke' audit of 77 clinics. The BSGE falsely prints that most women reported "slight pain". Yet they state that the mean pain scored is 5.2/10. They refuse to publish the percentage of women who suffered severe pain. Clearly they don't want prospective patients to know the actual risk of severe pain during an outpatient hysteroscopy. And most extraordinarily ... some of the hospitals in the audit only returned ONE patient's survey! The BSGE exclude the Campaign Against Painful Hysteroscopy from meetings of their Ambulatory Care Network. Could this be that they would prefer women not to know the real risk of severe pain in outpatients, and therefore not to elect to have hysteroscopy with sedation, regional or general anaesthetic? Maybe its time for the BSGE to form a James Lind hysteroscopy Research Priority Setting Partnership? Prof Emma Crosbie ran a James Lind womb cancer research project at St Mary's Manchester. Patients, professors, nurses, carers all gathered together to suggest and vote for the 10 most useful research questions. Then Team Womb at Manchester got to work on answering these questions. And guess what? Soon a load of hysteroscopies may be redundant as vaginal swab tests are likely to be declared sensitive and specific enough to identify reliable biomarkers of womb cancer. It's time for all gynaecologists to be brave and end tokenism in Patient & Public Involvement.
  3. Community Post
    Dear Teresa1 @Teresa1 I apologise for only now seeing your post. I hope very much that the situation has been resolved and that you have had the hysteroscopy under general anaesthetic and that all is well. Please, if you are still waiting, then I've attached below the statement that the Royal College of Obstetricians & Gynaecologists has published on its website. Here, the hysteroscopists' professional body - the British Society for Gynaecological Endoscopy - have made it perfectly clear that all women must be given the option of GA/regional A (and if available then IV sedation with analgesia) upfront. The RCOG's hysteroscopy leaflet also states that outpatient hysteroscopy probably isn't a good idea for people who've previously had a traumatic gynae procedure. (attached) Please, if the situation hasn't been resolved and if you're on Facebook, you are very welcome to join the closed Action/Support group of the Campaign Against Painful Hysteroscopy. To do so please send me - Katharine Tylko - a FB friend request and I'll add you. I'm not a medic just one of the admin. Our group cannot give medical advice but we can share our experiences and RCOG/BSGE/NHS info about hysteroscopy protocols. All best Katharine
  4. Community Post
    Hello Carrie - It's your body so it's your choice what happens to it. Having said that, I'd hate the Campaign Against Painful Hysteroscopy to prevent anyone's cancer from being diagnosed early. Hysteroscopy is currently the best test to rule out womb cancer - but there are other ways of doing it than just outpatients or general anaesthetic. I'm not a doctor so can't give medical advice but I can say that some hospitals have super-modern ultra-sound machines and I would ask about these. Also, please ask about the options of spinal anaesthesia/ epidural/ MRI and the ArquerDX urine test for womb cancer. I just want to make sure that the unlikely presence of womb cancer gets ruled out and that an explanation is found for the bleeding. Am so sorry you've got caught up in this.
  5. Community Post
    I'd very respectfully say there's masses and masses of research into outpatient hysteroscopy pain. The Campaign Against Painful Hysteroscopy has been in existence for over 7 years. We've read several hundred papers and audits on outpatient hysteroscopy pain. The most recent survey of 5,000+ patients done by the British Society for Gynaecological Endoscopy showed a mean pain score of 5.2/10. Individual hospitals are currently reporting 1 in 3 outpatient hysteroscopies as causing SEVERE pain of 7/10 or more. The Royal College of Obstetricians & Gynaecologists have produced a leaflet (with input from our campaign) that lists some of the well-known risk factors for severe pain, e.g. previous traumatic gynae procedures; severe period pain; anxiety/depression. Very sadly, because of a shortage of 1,400 anaesthetists in the NHS, most women are being put through Trial by Outpatient Hysteroscopy and only when the pain is unbearable are they offered general/regional anaesthetic or IV sedation with analgesia. It's a scandal. There are detailed Cochrane reviews which clearly explain the innervation of the vagina, cervical canal and uterus. There are different types of nerves all over the place, including at the top of the womb where the biopsies are taken. Hysteroscopy is inherently painful. For it to be minimally painful there must be 1) careful selection of patients, 2) modern thin scopes and fluid management systems, 3) a highly trained, experienced and compassionate team. Very sadly it's uncommon that all 3 factors are in place. Women who haven't had a vaginal delivery or who are past the menopause have a much narrower cervical canal than a woman who has recently had a baby. Hysteroscopists know that dilating the canal will be extremely painful - just like childbirth! Unfortunately, fewer and fewer gynaecologists are prepared (or allowed) to take the time needed to do pain-free injections around the cervix. Many prefer not to give an injection because this can produce a vaso-vagal reaction - but also because it takes up precious time. So a political decision has been taken by members of the British Society for Gynaecological Endoscopy to promote routine conveyor belt outpatient hysteroscopy without pre-op assessment and therefore with only over-the-counter medication from home (which will not touch the severe pain experienced by 1 in 3). We're campaigning for INFORMED CHOICE. At the moment 2 in 3 women will not have severe pain during an outpatient hysteroscopy. The problem is that NHS Trusts are not being truthful with patients and are not warning them of the risk of severe pain and of the well-known risk factors. They are only mentioning 'mild discomfort'. We want every woman to be able to choose the pain-control strategy that's best for her as an individual - from 'vocal local' hairdresser chit-chat; entonox; penthrox (green whistle); local anaesthetic; spinal anaesthetic; general anaesthetic; IV 'conscious' sedation with anaesthesia. Some people are quite happy to be awake and can tolerate brief acute pain. Other people find the stirrups, the scope, dilators and blood on the floor totally gruesome. Let's hope the long-awaited Women's Health Strategy finally respects a woman's right not to be sexually brutalised during a medical procedure.
  6. Article Comment
    Here's the quote I gave HSJ from the Campaign Against Painful Hysteroscopy: “A shortage of anaesthetists continues to cause barbaric pain in gynae endoscopy. Leading gynaecologists are trivialising uterine endoscopy and claiming it causes only “mild discomfort”. So women are tricked into attempting hysteroscopy/biopsy/polyp removal with NO sedation, NO anaesthesia and just paracetamol & ibuprofen from home. NHS audits show that 1 in 3 hysteroscopy outpatients suffer SEVERE pain. Yet colonoscopy patients are routinely offered safely monitored IV sedation with analgesia. Do we need #metoo lawsuits to end the gender pain gap?”
  7. Community Post
    Dear Pipsqueaker I'm Katharine Tylko - a researcher for the community interest group the Campaign Against Painful Hysteroscopy www.hysteroscopyaction.org.uk On Twitter we're @HysteroscopyA Am so angry that you were treated appallingly. The Royal College of Obstetricians & Gynaecologists and the British Society for Gynaecological Endoscopy in 2018 issued a statement telling hysteroscopists to follow GMC informed consent guidelines and offer all hysteroscopy patients upfront the option of general anaesthetic or IV sedation with analgesia. Hysteroscopists were also instructed to stop (and reschedule with GA) if the patient was in pain. These recommendations have applied throughout and after the covid pandemic. The Campaign Against Painful Hysteroscopy knows that the RCOG guidelines and patient leaflets are being ignored by most English acute Trusts. Freedom of Information Act requests and responses show that currently 1 in 3 women are experiencing SEVERE pain during the outpatient procedure. Please if it's any use, and if you're on Facebook, then we have a closed Action/Support group of hundreds of patients. You are very welcome to join us. To do so please send a Faceboook friend request to Katharine Tylko (one of the admin, not a medic) and I'll add you to the group. A good place to improve a local hospital's hysteroscopy protocol is the independent website www.careopinion.org.uk For up to 3 years after the event one may tell one's story anonymously but mentioning the hospital's name. Another good way of campaigning is to contact the Women's Health Minister, Maria Caulfield who responded in January to a debate brought by Lyn Brown MP asking for increased theatre capacity and anaesthetists for women who need general or regional anaesthetic or IV sedation with analgesia with sedation for endoscopy of the womb. I hope this makes sense. The Campaign Against Painful Hysteroscopy is indebted to all of PSL's staff for highlighting the gender pain gap suffered by thousands of hysteroscopy patients each year. This cruelty has to stop.
  8. Content Article Comment
    Am so sorry to read about all the pain and uncertainty that you have endured. Thank you for posting such a clear and detailed story which explains how gynaecologists were pushing a seemingly trivial operation without consideration of its long term side effects.
  9. Content Article Comment
    Good to see that the Royal College of Obstetricians & Gynaecologists' patient info leaflet has been adapted by Kingston. It's truthful about the risk of severe pain during biopsy. It could be a lot more detailed about the possible need for a paracervical block and the inability to guarantee pain-relief for polypectomy and fibroid removal. The pain and duration of fibroid removal is played down. There have been recent reports on Care Opinion of awful hysteroscopy procedures at Kingston. Training needs to be investigated as does truthful 'shared decision-making'.
  10. Community Post
    Hi HelenB Am very sorry to hear you had an awful HOLOGIC Myosure procedure. Am concerned too that you weren't warned upfront that a typical pain score for Myosure is 7/10. Please, if it's any use and if you're on Facebook we have a hidden/closed Action/Support group that you're most welcome to join. If you'd like to do so please send me - Katharine Tylko (one of the admin, not a medic) a Facebook friend request and I'll add you to the group. Meanwhile, we have an ongoing anonymous 'dissatisfaction survey' of painful hysteroscopy at https://docs.google.com/forms/d/e/1FAIpQLSc2XTOe81rEy7zV2ARNPECceYyE--wTtR0mA10XHIxNQVOBrw/viewform?fbclid=IwAR2OuUIFSAa_Nk5HggwX5ZB_C94k_ObKn1qJHaio1oRHMuxexcyY9nR9NsU We've amassed 1,500+ awful stories collected to show that excruciatingly painful outpatient hysteroscopy is not the rare occurrence that the British Society for Gynaecological Endoscopy claims. Sorry for ranting. Updates of our campaigning are at www.hysteroscopyaction.org.uk Best wihes, Katharine
  11. Community Post
    Hello Np - I'm very sorry to hear about the Myosure procedure. I hope that you will feel a lot better soon and that the memory will fade. You are absolutely not alone in experiencing severe pain and trauma during an outpatient hysteroscopic procedure . Please, if it's any use and if you're on Facebook, the Campaign Against Painful Hysteroscopy has a private/hidden Action/Support group you'd be very welcome to join. If you'd like to do so please send me (Katharine Tylko - one of the admin, not a medic) a FB friend request and I'll add you. We have an anonymous patient survey if you're interested: https://docs.google.com/forms/d/e/1FAIpQLSc2XTOe81rEy7zV2ARNPECceYyE--wTtR0mA10XHIxNQVOBrw/viewform?fbclid=IwAR2OuUIFSAa_Nk5HggwX5ZB_C94k_ObKn1qJHaio1oRHMuxexcyY9nR9NsU A good place to prompt your hospital to offer better pain-relief is www.careopinion.org.uk Here one can tell one's story anonymously and sometimes the hospital actually makes improvements. NHS audits show that 1 in 4 outpatient hysteroscopy patients suffer severe pain. However, the British Society for Gynaecological Endoscopy has done its own survey of outpatient hysteroscopy and found that patients rate the care they receive from its members as 9.7/10. So we have our work cut out to persuade them that patients are suffering unnecessary pain! (Interestingly, some of the BSGE members only submitted a single survey response.)
  12. Content Article Comment
    Dr Sundar - I can't thank you and PSL enough!! You should get a medal for this. You told the truth about outpatient hysteroscopy - and you didn't pretend that "only 3 to 5%" women experience severe pain. The Campaign Against Painful Hysteroscopy has been inundated by horrific stories of women crying, screaming, fainting or vomiting during OPH and then feeling that it was somehow their fault. I so hope that the BSGE and RCOG include your truthful evidence in their new hysteroscopy guidelines and patient information. Since Montgomery and Cumberlege there is no legal excuse for women not to be warned of the unpredictable risk of severe pain of 7,8,9/10. Women should be given the choice of attempting hysteroscopy in outpatient +/- local anaesthetic/ Entonox should they wish, but equally be given the option of timely GA/ spinal anaesthesia/ IV conscious sedation with analgesia. Thank you for caring and speaking up about the basic human right of not being made to endure agonising and degrading medical treatment when safe alternatives exist. Katharine
  13. Content Article Comment
    Dear Lisa - this is SUPERB! Thank you so much for acknowledging gynae pain and the way that women are taught from an early age that they must keep quiet about even white-hot searing pain. At the Campaign Against Painful Hysteroscopy we're trying to persuade the Department of Health to permit all NHS hysteroscopy patients to choose from a range of pain-control options (including IV sedation, spinal/regional/general anaesthetic) and not be forced through Trial by Outpatient Hysteroscopy with just 'vocal local'. @hysteroscopyA www.hysteroscopyaction.org.uk On Facebook: the Campaign Against Painful Hysteroscopy community plus closed group. Good luck in all your work! Katharine
  14. Community Post
    Hi Emmyloow - that's really good that your polypectomy was bearable. The Campaign Against Painful Hysteroscopy stresses that 75% of patients feel only mild to moderate pain - and some people feel no pain at all. One way of helping to reassure future patients would be to post your story (can be done anonymously) on www.careopinion.org.uk. It helps patients to see where the good clinics are. One of the aims of our campaign is to persuade the NHS to offer IV sedation with painkiller as an option for womb endoscopy. Then hysteroscopy patients would have the same pain-relief as their brothers and sisters having colonoscopy. We hope that as soon as effective pain-relief is available for all patients then there won't be any more horror stories to scare people.
  15. Community Post
    Hi Birdy - it's great to hear that you had a skilled compassionate team looking after you. I'm a researcher for the Campaign Against Painful Hysteroscopy. It's very useful and reassuring for patients to know where in the country there are excellent outpatient hysteroscopy teams. Please, at some stage, might you consider posting your story anonymously on the independent www.careopinion.org.uk website? Totally agree with you that all women should be able to make a fully informed choice as to how hysteroscopy - and other gynae procedures - are performed.
  16. Community Post
    Hi Alice - I'm Katharine, one of the admin of the Campaign Against Painful Hysteroscopy. Am not a medic so can't give medical advice but can point you in the direction of medical advice. You're absolutely not alone in having had previous difficult gynae procedures and wishing to be asleep for a hysteroscopy. The Royal College of Obstetricians & Gynaecologists has issued a statement saying that even during the pandemic women having hysteroscopy are free to choose GA/IV sedation instead of an outpatient procedure. (See below) We know of women who've had GA hysteroscopies during the pandemic but others have been offered IV conscious sedation because there's less risk of potentially spreading any covid19. IV sedation has worked very well in the past for me for various endoscopies I've needed. Please, if you're on Facebook, the Campaign Against Painful Hysteroscopy has a closed Action/Support group that you are most welcome to join. If you'd like to do so please send me - Katharine Tylko - a Facebook friend request and I'll add you to the group. If you're not on Facebook, please email me ....@....com and I'll try to help regarding your local hospital. Can totally understand how scary and horrible the idea of being forced into an unsuitable procedure is. There are loads of choices of ways of having a hysteroscopy to rule out cancer. Recently one of our campaign members had a GA arranged under the 2 week-wait rule. Please don't feel pressurised into something that's medically unsuitable. All best, Katharine
  17. Content Article Comment
    Thank you so much for wanting to do the very best for patients. I can't begin to imagine how exhausting it must be to nurse under pandemic conditions when the rules keep changing. Please don't feel bad about taking some time away to recharge your batteries. Your health matters above everything. I do hope that your hospital's management understands that if they want to retain their staff they must support them in every way they can. You are humans not machines. Please - what can we patients do to help?
  18. Content Article Comment
    Please - what can we patients do to ensure that nursing and care staff in future always have effective PPE? It was wrong that your lives and your families' lives were put into serious danger.
  19. Community Post
    Thinking aloud ... Please are there ways of enabling a next-of-kin to say goodbye to a conscious but dying covid-19 patient so that patient doesn't die without family? A voice on a phone? A video on a phone? A written note (in laminated, sanitised plastic pocked)? Some form of talisman that the next-of-kin gives the patient when they're taken to hospital? As a cancer radiotherapy-survivor I know how comforting it was to carry a small note from my husband into the 'lock-down' radiotherapy rooms. Obviously during this pandemic safety is paramount but a safe compromise way of farewell would help everyone involved with the death.
  20. Community Post
    A small update on routine GP-surgery blood tests and injections during COVID-19. Some very good local news from Bath and Swindon. My local GP services are soon to organise 'hot' and 'cold' GP practices. This means that the risk to presumably covid-19-free patients of picking up the virus and spreading it to their household will be much reduced. So for example, I can have my routine B12 jab without a high risk of picking up the virus that's killing people locally and spreading it to a vulnerable asthmatic recovering from cancer. Well done our local NHS!
  21. Community Post
    Thanks very much for your comments. It's hard to balance conflicting serious risks where information is missing. Maybe patients could have the option of learning on-line to do their own routine injections and so protect health-care professionals and the general public? Or maybe army medics could support the district nurses who are needed to care for the seriously ill housebound? Above all we need covid-19 testing for ALL health-care workers to reassure patients that GP practices are safe.
  22. Community Post
    HOW SAFE ARE OUR GP PRACTICES during covid-19? For the health care professionals, their patients, and families of patients? I'm a 65-yr old diabetic needing routine B12 injections. My GP tells me to turn up as normal so I don't develop neurological problems. I don't think anyone in the practice has been tested for covid-19. I'm refusing to turn up since I suspect the GP practice to be a covid-19 hot-spot. I don't want to transmit this virus to my frail, elderly asthmatic husband who's undergone cancer treatment and a lot of surgery. I've persuaded the GP to give me a precription for oral B12. Have I done the right thing? How can I help GPs and patients in far worse dilemmas than mine?
  23. Content Article Comment
    Have signed and shared the petition. Thanks very much for letting us know about it. We patients want to help you front-line staff as much as we possibly can. Please know that we care about you all and are incredibly grateful for your bravery and unselfishness. Please, tell us ordinary patients what we can do to help hospital staff and their families. You are HEROES!
  24. Content Article Comment
    OMG
  25. Content Article Comment
    I love your emphasis on 'be kind'. That immediately puts the patient at the centre of their care. Am writing on behalf of the Campaign Against Painful Hysteroscopy. Please do you know of any NHS initiatives to enable women to choose safely monitored IV sedation with analgesia for endoscopy of the womb? It would end an awful lot of suffering.
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