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How do we make hysteroscopy processes safer for patients? 

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How do we make hysteroscopy processes safer for patients? 

 Hysteroscopy procedures are an important diagnostic tool that involve a long, thin tube being inserted into the womb. This is often being performed under outpatient services with little anaesthesia. Although a small number of women may not feel any pain, we know from patient testimonials that the pain experienced for some can be unbearable, in some cases leading to Post Traumatic Stress Disorder.

In a recent blog, Patient Safety Learning has made several recommendations for improving the safety of hysteroscopy processes, focusing particularly on informed consent and listening to those with lived experience. Much of this insight has come from patients, many of whom have shared their experiences on the hub.  

We believe that urgent action and multi-system collaboration is needed to make sure all women who require a hysteroscopy are given safe, quality care and treated with respect. So we are asking anyone who has insight to share in this area, to join the conversation by commenting below.* 

What are the barriers? Are there examples of excellence that can be shared? What do patients need to feel safe? What do clinicians need to deliver safer care? 

Your insight will help to inform the direction of our work for safer hysteroscopy care. 

*You'll need to be a hub member to comment, it's quick and easy to do. You can sign up here.

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In my opinion, there is a clear balance that needs to be addressed. The frequent use of hysteroscopy is an important clinical target, with multiple diagnostic benefits, especially regarding serious conditions wherein early diagnosis is important for beneficial clinical outcomes. It is also clear that the NHS has severe financial pressures, with this worsening year on year (not even mentioning Covid). Lastly, avoiding the use of general anaesthetic and sedation have benefits for patients, healthcare providers and the reduction of risk.

However (and this is a large however), all of these benefits do not excuse the continued ignoring of a serious problem impacting a large proportion of women that undergo hysteroscopy. As a man, this is a trial I will never have to undergo. But the well-articulated reports I've read from women who have experienced intolerable pain and instances of remarkable absences of empathy are beyond troubling. Outside of my interest in hysteroscopy, my research focuses on pre-surgical pain assessments, and I am attempting to identify mechanisms that may indicate vulnerability to pain. My ambitions are the development of methods to stratify patients into risk categories for pain. It is clear that some women experience no pain or discomfort during hysteroscopy, where some experience the worst pain of their lives. If we can develop methods to cluster these patients before the procedure, then we could hopefully limit the frequency of this serious problem.

However, until we can do this, it is unethical and inappropriate to advertise the procedure as being pain-free or low-pain, when my research indicates this is true in less than 10% of cases. Pain has an ability to leave an indelible mark on our characters, memories and self-worth. Medically, hysteroscopy represents a diagnostic procedure which much benefit, and it is crucial that women are not traumatised and scared off for life. The current National protocol requires an entire revamp, and I am very pleased to encounter so many campaigns raising awareness and fighting the battle on behalf of those who, otherwise, may find their voice is not loud enough to be heard. This was an excellent article, and I wish the Patient Safety Learning group and disenchanted hysteroscopy patients all of the best in their pursuit of change.

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Thank you Richard, for your support and excellent research. There has been too little research focus on this area and the voices of women are not treated enough as an evidence base. 

I completely agree with your statement that ‘it is unethical and inappropriate to advertise the procedure as being pain-free or low-pain, when my research indicates this is true in less than 10% of cases.’

I hope that through collaboration with patients, clinicians, researchers, policy makers organisational leaders, politicians and the media we can promote the urgent need for action and pain free hysteroscopy. Helen 

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Clinicians need to remember that they may not get a second chance to perform hysteroscopy if a lady has a traumatic experience the first time.

I declined the second hysteroscopy as the first, where a biopsy was taken, was so painful. I would have had to undergo pain again to prove that I couldn't tolerate the procedure without any sedation before they would consider doing it under  GA.

Of course all my friends know how painful it was for me; so what happens if they need to go through one in the future but decline it as a result of hearing about my experience?

If it were up to me I'd ban this barbaric, humiliating and traumatic procedure. 

 

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I do not scrub for hysteroscopies, but I recently circulated for one in theatres- It was diagnostic- the patient was awake talking to the anaesthetic nurse about the weather, holidays etc .The surgeon explained the procedure throughout the short procedure after injecting local anaesthetic.The patient could also follow the procedure on the monitor- 

It went very well- So why can't we do all hysteroscopies with local anaesthetic or sedation if the procedure will take longer ? Surely there is no need to subject women to unnecessary pain-

And please can we stop telling women it's just 'like having a period' or 'if they have had babies,then they should not have a problem'!- This is belittling, and in no way accurate.

 

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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.   

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The CAPH have been doing fabulous work in promoting the need for pain free hysteroscopies. We’ve included the letter recently written to Matt Hancock, research and a blog by Patient Safety Learning in our Learn section. Links below. 

Campaign Against Painful Hysteroscopy: Open letter to the Department of Health and Social Care (20 October 2020)

Improving hysteroscopy safety (Patient Safety Learning, November 2020)

“Pain-free hysteroscopy”, a blog by Dr Richard Harrison

Outpatient hysteroscopy: RCOG patient leaflet

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You are so correct Katherine- In my previous role as an auditor for Surgical Safety Checklist, I audited Endoscopy lists in hospitals.

Patients having colonoscopies, sigmoidoscopies etc, were always assessed and consented for sedation of their choice including  with/ without entonox.

The endoscopist gave the sedation.If a top up was required, it was given by the IV trained  RGN in the room.

There is no reason why it should be different for women having a hysteroscopy, especially if it's only a case of training.

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Edited by Kathy Nabbie

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

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I was a Registered Nurse who was still practising when I had my outpatient hysteroscopy, so understood the concept of informed consent, which only much later became clear that I had not given. I had previously had one under a GA at the same time as a laparoscopy, so it had not occurred to me to research the subject as I had wrongly assumed that I would be given accurate information regarding the procedure. I was made to feel as if it was my fault for passing out during this procedure, that my reaction to unbearable, excruciating pain was as rare as hen's teeth. I was not treated with respect. It was only some years later, when I read a newspaper report on the experiences of women who had been conned in to having this procedure with no pain relief offered, that I realised that my experience was far from uncommon. In order to feel safe, patients need to know that they are not being lied to and that their individual circumstances and medical history are being taken in to consideration, as they always should be. It appears, though, that many women are still being subjected to "office" hysteroscopy inappropriately, when their history, had anyone bothered to consider it, would demonstrate that this was contraindicated - for instance, women who have never given birth vaginally, who have had severe dysmenorrhoea during their menstrual history, and are post menopausal. In 2020, women should not have to fight for their right to have appropriate pain relief or a GA.

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Guest Samantha Coombes
Guest Samantha Coombes

I had a hysteroscopy and biopsy, under GA, ten days ago. I am still very uncomfortable and unable to work or sleep properly.

I had to fight every step of the way to have the procedure under GA. Firstly, St.Mary’s hospital in Manchester rang me unannounced and asked me to ‘pop in tomorrow’ for ‘a quick procedure’. I turned the offer down and thank god I did as it gave me time to do some research. The person on the phone tried to convince me to come in for the hysteroscopy the next day but I refused.

Next, I received a pamphlet a few weeks later with a date for an outpatient appt for the procedure. Very vague and deliberately evasive about the whole thing. I called them and said I wanted to have a GA. I was made to feel hysterical despite my polite request.

Nevertheless I stood my ground and was told I would still need to attend the appointment to discuss further. I attended and they tried to get me go ahead with the procedure there and then. I was in tears. Even once I’d completed the pre op paperwork and was crying, the nurse still said “are you sure we can’t change your mind?”

On the day of the procedure, I spoke to my consultant before theatre and once again I was questioned about my choices. I cried. I was told that he would speak to me after the procedure - I never saw him again and when I asked to I was ignored.

Ten days later I’m still in pain and rang the ward to ask for advice and was told to see my GP. Of course I can’t due to CV19.

Truly awful experience from start to finish. I felt like I was fighting off the unwanted advances of a drunk at the Xmas party every single step of the way. Shockingly medieval treatment of women in 2021.

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Guest Helen Tate
Guest Helen Tate

The nurses performing the hysteroscopy where lovely . But the procedure it’s self was very painful 

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Hi Samantha and Helen, thank you for sharing your experiences and I am so sorry that you have both been in pain. 

Patient Safety Learning continue to highlight our concerns around painful hysteroscopies, the lack of choice of pain relief being offered and whether informed consent is being consistently obtained. Our most recent blog looked at the correspondence we have received from ministers, in response to these concerns.

https://www.pslhub.org/learn/patient-safety-in-health-and-care/womens-health/ministers-respond-to-patients’-concerns-about-painful-hysteroscopies-northern-ireland-scotland-and-wales-february-2021-r4035/

Please do sign up to become a member of the hub, it's free and easy to join https://www.pslhub.org/register/ and you'll be able to keep up to date on this issue by signing up to our newsletter or setting up notifications. If you have any questions, please get in touch at content@pslhub.org  

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Guest Donna
Guest Donna

I had an hysteroscopy this week, flowing on from a scan that showed I had thickening in my post menopausal womb. The team of staff were lovely, however I could never have imagined the level of pain experienced during the procedure. I was assured that I was in control throughout, and a nurse offered me her hand to hold. Nevertheless, I have been left traumatised and I keep replaying the procedure in my head, each time convinced I can still feel the pain. I am glad that I got it out the way, but surely there must be an alternative to this torture. I know that sounds dramatic, but honestly if  someone tearing away flesh without any form of pain relief is not torture then I don't know what is.

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Anonymous
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