How can this be informed consent for a hysteroscopy?

[trainedopossum]

I'm posting in this topic because I thought maybe there would be a more nuanced understanding of the issues and I feel a bit bruised. Maybe this isn't limited to women's health but the NHS does now seem to have a special antipathy for women and their bodies and opinions.

After a lifetime of gynaecologically uneventful health, since perimenopause I find gynae procedures physically very unpleasant with an added emotional dimension, it's almost like a phobia.

I had my biannual menopause clinic appointment on Monday and reported some post meno bleeding, was told I'd be "referred to the rapid access clinic". The clinician said she was not worried and didn't expect it to reveal anything sinister but it should be checked. In the past when I've had bleeding I've been referred for a transvaginal ultrasound and on the basis of the result they have sometimes referred me for a hysteroscopy, so expected a similar order of events.

I received a letter on Wednesday morning saying I'd been referrred for an outpatient hysteroscopy which would take place on Saturday morning, three days later.

I rang the number on the letter to ask if there would be an US first, told no, just the hysteroscopy. The person I spoke to was officious, borderline hostile. She said I must have been told about it, they have to discuss it with me fully when they make the referral etc. Told to ring a second number, reached a more pleasant and reasonable person who told me to email the clinic as that would be the quickest way to get to them. Emailed immediately explaining and requesting details about whether an US would be appropriate and if not I'd need to reschedule to have the hysteroscopy under GA. No reply yet.

As the procedure is scheduled for tomorrow I rang this morning to say again that I need to change the appointment, spoke to the same rude woman as before who talked over me and said someone would have discussed it with me and I'd be getting a local (she kept saying it, "It's a local, a local") not a general ananesthetic. (How to reply to that? If I'd known I was being referred for an outpatient hysteroscopy the first thing I'd have said is that I get a GA for them, why would I wait to get the letter and then try to change it?) When I explained I'd like a GA for this procedure she said she'd cancel it and as I thanked her she put the phone down on me.

How can they say they seek informed consent? Under these circumstances how can I better advocate for myself? It's not one thing, it's the combination of never seeing the same person, faceless bureaucracy, no useful way to contact anyone, a hostile/adversarial attitude telegraphing the idea that you should be grateful for any appointment whether it's in three days or eight months. I feel bad for the rude woman I spoke to who must find her own job very unpleasant.

They don’t need consent to send you an appointment though. Sending you an appointment is just an invitation for you to attend. You could decline the procedure at any time, even when at the appointment, lying on the table and them preparing to put instruments inside you.

You’ve emailed them, that will (eventually) get you all the information you need, you might just be waiting a long time because staff are pushed, waiting lists are long and so something that’s going to take extra time and resources (anaesthetist, additional theatre staff, recovery staff etc) will take time to arrange. I’m not saying it’s right, but funding is the issue. You change it at the polling station, although I’m not convinced anyone is trying to save the NHS any longer. Protocols change all the time, usually due to cost cutting, you can never assume that what happened before will happen the same way next time sadly.

Consent is only really needed before an actual procedure.
Paperwork is often signed before a procedure in lots of cases, I have had two laparoscopic procedures, one I signed consent for before the appointment, one I signed the morning just before surgery. I had a discussion and was informed on both occasions. That’s informed consent.
I’ve had multiple egg harvests, information given and consent signed on the day of procedures.
My hysterectomy, some paperwork signed before, more paperwork signed before going down to theatre. Information was repeatedly given before the anaesthetic, and consent was repeatedly sought before I was put under.

I don’t think it’s entirely a women’s issue either. DH has had two very major surgeries and several minor ops. The experience has been the same for him.

I hope you don’t have to wait too long for answers, or for your procedure.

You haven't consented, they have merely sent you an appointment.

They would have needed consent prior to the procedure but not now.

Sounds like a better service than I am currently receiving from the NHS tbh, I can't get them to answer the phone at all, and no emails or voicemails are responded to.

Anyway, I'm sorry this has happened, it's worrying & annoying & frustrating. I do think you need to check you have been booked in for the scope under GA.

I'm not sure what you're looking for from your post here. You ask how you can better advocate for yourself in, I think, the context of ensuring you aren't pushed into a procedure you don't want, but I think you did an excellent job in trying circumstances.

The service you received was very poor but nothing happened that you didn't consent to. I do think there are situations in the NHS where consent is actually brushed aside, but this didn't reach that stage and it's not clear that it would have. I am really sorry you had to fight to be heard, run around to find out what was happening and still don't have what you need, though.

In terms of advocating for better service on the NHS - I'm not sure. Women's services seem particular poor at the moment. Maternity is in crisis. Systematic undervaluing of women's reported pain levels and a willful lack of interest in debilitating gynecological conditions have been endemic in the NHS since its founding. Respect for women's concerns around privacy and dignity has plummeted. But there are growing problems across the board. I don't think this can be tackled effectively while staff moral is so low. Better staffing and pay for nurses are needed so we have more committed staff who feel valued and have the time to consider the impact of their actions in a wholistic way is an essential foundation. I don't think it's realistic to think you can change the culture to one where compassion, patience and flexibility are the norm if the staff are pushed to the limit to deliver numbers and feel unvalued and stretched to thin themselves.

I understand how you feel OP. There should have been clear info given at the referral stage. It's a complete waste of time to leave the discussion of needs till after the appointment date is sent.You should have had a date that accommodated your needs.
Unfortunately this seems pretty much standard care now.

Personally I think you've wasted valuable nhs time and money. Yes, nhs is rubbish a lot of the time. But you got an urgent referral but wasted the appointment for a non medical reason.

How can you better advocate for yourself?

When you get offered a referral, ask what it’s for and what happens next. Don’t assume you know, and keep in mind that protocols are revised over time so even if you’ve been through the referral before it may not be the same in future.

It seems like you’ve advocated for yourself appropriately already. They sent you a letter stating what the appointment is for and you then clarified and it’s now cancelled at your request as you don’t want it without a GA.

you might be better off going private if you wish to have the procedure done in a way that isn’t usual on the NHS

I’ve had three post menopause hysteroscopies. NHS.
On each occasion, I was treated with nothing but respect.

I think the NHS would have let the OP know if they would never agree to a GA for this

She had a good reason.

Thanks for replies. When I wrote this yesterday it was in the middle of managing a number of medical appointments and it was a last straw situation. Maybe I'm already adequately advocating for myself.

I'm sure the letter they send does meet the legal standard of providing informed consent and you can of course withdraw consent at any time but it seems better to be informed in advance to avoid having to make decisions on the table during the appointment. I read a lot on MN about wasting NHS time and want to avoid it but every stage of this process feels rushed and under pressure.

This may be the fourth time I've had this referral and every time getting a clear view of my options has been like pulling teeth. When I've asked in the past I've been told to wait for the letter which would explain everything. The appointment letter discusses both ultrasound and hysteroscopy, so it's unclear which procedure will be performed.

There has never been an up front discussion about anaesthesia, I've always had to request information about it. Informed consent requires discussing options. This is a problem for a lot of women, who feel misled about how painful this procedure can be and what can be done to prevent having that experience.

Thanks again for replies. I know people feel protective of the NHS and lots of women will have had this procedure without anaesthetic and will wonder what all the fuss is about.

I understand where you're coming from and I agree that they should have made it clear at referral stage. Otherwise it is the NHS wasting its own resources by referring you for the wrong procedure.

I also think it risks setting up patients to be in situations where they don't feel able to decline because they've already turned up for their "precious" NHS appointment and feel under pressure because of the endless narratives about protecting the NHS from so-called time wasters.

Even without NHS worshipping, it's not that easy to back out of a procedure that isn't what you thought it would be once you're at the hospital or clinic with all the staff there expecting you to proceed. There is a lot of pressure to go ahead at that point, especially if you're already on the bed.

I vehemently disagree with pp suggesting you shouldn't be able to have hysteroscopy under GA or that you somehow don't deserve to have appropriate anaesthesia for a procedure on the NHS. That's just ignorant. We have real problems with women being subjected to unnecessary pain for their medical care and that kind of attitude is why.

It's very disappointing to see comments defending or advocating for such poor practices.

You’re crackers. The anaesthetic part is essential, and the clinic have actively avoided a discussion about it. I find it astounding this is ever offered on a local.

I had a very similar experience. I was made to feel like I was being OTT just asking for information or questioning the process.

I decided not to have the hysteroscopy in the end.

It sounds as if you have adequately advocated for yourself, I really don't think there's much else you can do.

Take Care

I’ve had 3 now and anaesthetic of any kind was never raised. Was advised to take a couple of otc pain killers an hour before the procedure.

@MrsSkylerWhite poor care is sadly too common.

OP, hope you don't have to wait too long for your GA appointment. The vast majority of women presenting with weird or post-meno bleeding who have hysteroscopy don't have anything malignant.

I agree that they should have listened to you and your previous experience of the procedure, and explained options rather than telling you it would be an outpatient thing on maybe a local jab and a couple of paracetamol. Giving the right information at a point at which you can usefully use it is the essence of informed consent. I think things get rushed through far too often. I recently had a hysteroscopy myself (and I requested a GA, mostly because I was aware, via MN, of how awful they can be!) and to be fair to them, they did explain different options and potential wait times. (In fact it only took another three weeks) But right before I went down to theatre, the gynae asked if I wanted a Mirena coil put in at the same time and it really flustered me. There was no time to think or do any reading, or ask questions.

"right before I went down to theatre, the gynae asked if I wanted a Mirena coil put in at the same time and it really flustered me. "

Right before I had a tooth operation under GA the anaesthetist asked whether I wanted sedation instead. I was really put on the spot with no explanation of the difference so I just said no, but now I think I probably should have opted for that. It would have been great if they'd asked me that earlier.

I cancelled a hysteroscopy for a non medical reason last October. My dad died and i knew i couldnt undergo a painful procedure without a GA which is bad enough on its own while greiving.

@Funnyduck60how is wanting a GA for a procedure that is known to be painful on a background if known challenges with gynae procedure a “non medical reason” for cancellation?
OP I had one under GA recently. Thankfully I was offered that option from the start and at no point made to feel that it was anything but a reasonable and acceptable choice.

My experience has been that when I get to the clinic on the day of the transvaginal US, I sign a consent form then.

I cried after the first one I had, it was horrible. There is definitely an emotional element to it.

I hope it goes well for you. Maybe you could pay to have it done privately, if that is an option for you. You would get better care and service.

Thanks for the replies, especially those which were compassionate and supportive.
I’m still waiting for someone to get in touch with me, have had no reply to my original email nor to the follow up email I sent when the procedure had been cancelled.
To the PP who lost her dad, I’m not surprised you found it too hard to attend the appointment 💐
I feel grateful for the NHS but patients are human beings, not battery chickens.

What a ridiculous response. The medical reason was that she needs a GA for these procedures and that wasn’t going to be happening. It was perfectly reasonable for her to cancel the appointment having tried to establish she didn’t need an US first and then having it confirmed only a local would be offered. The OP has done nothing wrong here. On the other hand the communication and service she received was appalling.