Katharine Tylko

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

Hello Dr Bilas Yes - quite a few NHS hysteroscopy clinics offer patients entonox - but not all. The Campaign Against Painful Hysteroscopy has been lobbying for entonox to be made available in all outpatient hysteroscopy clinics. We know that some women find it helpful during hysteroscopy, particularly if they have used entonox successfully during labour. We campaigners are not medics but we know from our own experiences that entonox helps some women but not all. Personally it did nothing to help me during the excruciatingly painful removal of vaginal vault packing after Selectron brachytherapy. Our campaign has asked under the FOIA for the pain-relief protocols of NHS Trusts doing hysteroscopy. The replies are at www.whatdotheyknow.com but the info is by now out of date. Early this year we asked BSGE President Justin Clark about making entonox routinely available for hysteroscopy. He claimed that reaction to entonox was unpredictable and caused some women to vomit. Our campaign's view is that ambulatory hysteroscopy pain-control should be based on a patient's medical history and personal preferences. Hope this is useful. Best wishes Katharine

It's lovely to hear of another good hysteroscopy where the pain control was planned to suit the patient. Unfortunately the Department of Health, hysteroscope manufacturers and the British Society for Gynaecological Endoscopy currently promote "See & Treat" hysteroscopy without pre-op assessment. This means that most women - including women at high risk of severe pain - are put through a Trial by Outpatient diagnostic Hysteroscopy on just ibuprofen/paracetamol (if they've received a leaflet upfront). The Campaign Against Painful Hysteroscopy is campaigning for fully informed choice of pain control. We want patients' medical histories and preferences to be sought and acted upon. NHS colonoscopy patients are routinely offered a choice of entonox or safely monitored IV sedation with analgesia given by a trained team. Some colonoscopy patients have a GA or specialist anaesthesia administered by a trained anaesthetist. Hysteroscopists haven't been trained to give safe IV sedation. Many can't do a pain-free local anaesthetic into the cervix - and they don't have time for the anaesthetic to work. Campaigners are hoping that Nadine Dorries will address the hysteroscopy gender pain gap, introduce training in safely monitored IV sedation and give women the option of help from trained anaesthetists.

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.

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.

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

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?

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.

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.

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!

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.

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?

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!

OMG

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.