To think an NHS 111 operater shouldn't be saying this?

[EndoTheWorld]

Recently I called 111 due to severe endometriosis pain (extreme pain caused during period). The reason I called was because the pain seemed worse than usual - barely able to move, or think, just a world of agony. The usual dizziness, vomiting, shaking and fever was significantly worse and it is this that made me call - I thought something had gone very wrong and I might have an infection or something that was causing me to go into shock.

The woman on the phone was intitially sympathetic - I was groaning and panting my way through the pain as if in labour and was struggling to speak because the effort hurt even more. She said that she had endo too and understood. She then proceeded to lecture me about "lifestyle", telling me I neede to cut out red meat. I explained I was veggie, almost vegan (cheese is my downfall) so she started saying I should be entirely vegan. I also had to give details of my exercise regime. Of course, this kind of supplementary information/advice can be helpful in the right context but I don't think this was the right context!

Worse, because she inititally seemed sympathetic I ended up expressing, in a garbled way, my fear of this impacting my ability to hold down a job (not currently in paid employment). She told me she had never lost a job due to endo, in over 30 years. Well no, I suspect the NHS had decent sickness policies to cover this sort of thing! Bit different if you work in the local supermarket.

I repeated several times that the reason Id called was because the associated fever was so much worse and I thought maybe something else was wrong (I was concerned that I'd just be found dead a few days later, if it hadn't been the middle of the night I'd have called some people and got them to check up on me). It's so confusing because if I didn't have endo I'd have called an ambulance with those extreme symptoms, so it's hard to know if one should when the symptoms are significantly worse/different. She reluctantly offered a phone call from the out of hours GP (who called several hours later), but continued lecturing me about lifestyle - as if I can make this extreme pain disappear (and my lifestyle isn't bad, all her assumptions were wrong but she just got to a really nitpicking stage as if determined to blame my pain on me).

AIBU to think that when someone is in so much pain they feel like they are dying, it is not an appropriate time to lecture them about lifestyle? And even more shocking from someone who calims to suffer from it herself? I'm guessing she's the type who barely noticed they were giving birth and was running marathons the next day...

Completely inappropriate

It's not her job to lecture on lifestyle

It's her job to asses what medical help,if any, you need and require at the time of calling

YANBU - surely they are there to assess your symptoms and signpost appropriately, not to self-disclose all over the place?

YANBU

I was a 999's op for a bit and our training in first aid was basic. The system is there to diagnose patients. We can make calls but only if we believe somethings not right (ie child has bumped head but system states OOH GP) and then we consult the Paramedics, not just willy nilly.

The call will have been recorded so if you want to make a complaint the evidence will be there. She will also get audited on her calls so it may get heard back then.

I have a dc that works for them. Said dc says to report, it's not a call handler's place to give advice like that.

I work for them. Call and ask to speak to a supervisor. That shouldn't have happened.

I work for them,that is totally wrong phone back and ask to speak to a team leader and you want to make a complaint.

Definitely complain. Not only inappropriate but the time she wasted waffling meant she didn't deal with your call as efficiently as she should have getting YOU the treatment you needed as soon as possible PLUS delaying getting to a new call.

Also - endo is a hugely variable condition, hers might be a very mild case and yours more severe she can't possibly know otherwise.

me too! It inspired me to do my nurse training!

Deefinitely complain. The call would have been recorded so it will be fairly simple to get your point accross. Agree that endo can vary considerably - her experience and yours could be worlds apart.

I think if it was as bad as you say you should have called a taxi and got yourself to a walk in. The Nhs 111 people generally just read out advice. She shouldn't have been advising you based on her own history though. I have completely symptomless endometriosis that was only discovered during pelvic surgery so it's wrong to assume people will be affected in the same way.

I'm making sure I've got everything ready in case I do need to go to a walk in next time. (GPs being spectacularly unhelpful re. pain medication)
I hope a taxi won't mid taking someone who can barely shuffle along, is faint, shaky and carrying a sick bowl!

Scared of calling to complain but trying to pluck up courage. I'm kind of embarassed about being so upset/moany although I was in agony.

It was so surreal at the time explaining to her that when you're unable to move, in great pain, and shaking uncontrollably you're not able to go to work... was too mentally befuddled by it all to realise how ludicrous the conversation was.

And I know it's not my AIBU but how ridiculous is it that a man in those circumstances would likely be rushed to hospital by ambulance, whilst I am expected to endure it and get a call from a harassed GP several hours later, at best? Surely some middle ground, some acknowledgement that even though we know it's not an emergency the pain is extreme and needs treating?

Definitely unprofessional; I'd make a complaint.

Do you have good pain relief? Seeing a GP who understands can make all the difference

You should be able to email in a complaint if you don't want to do it by phone. Google should reveal your provider, or you can go through your local PALS.

Bumsex I wouldn't have minded her bringing her own history into it if she had said vague things about researching an endo diet or similar that she'd found helpful. It was more that she seemed determined to make it my fault somehow.

Given symptoms and signs as extreme as you describe, I'd call an ambulance. I've had to call them dozens of times over the years as one of my DC has major health problems, and I have got to know what qualifies for an ambulance and what would be taking the piss. Your condition warranted an ambulance, ime. As you say, you could have died in the night and you aren't qualified to evaluate the severity of the problem.

Next time (though hope there isn't a next time) call an ambulance.

Prawn. Surely I'd be told off for wasting their time? I now know it won't kill me... although I have to hope I don't develop another condition like appendicitus at the same time as I'd never know.

Also I'd presumably be put to the back of the ambulance queue, meaning paramedics may show up hours later (?) when pain has subsided a bit and I'd look like I was overreacting. (GP already thinks this.) I think taxi is the way to do it, I want them to see me in pain asap.

As others have said, please call and ask to speak to a supervisor to complain about this.

What you have stated most definitely should not be happening and they need to know.

All calls to 111 are recorded and they will be able to listen for themselves so it won't be "her word against yours".

Misogyny in healthcare being discussed on a few threads at the moment.

No men would not tolerate this they'd call an ambulance and they wouldn't be criticised for doing so.

Let me guess male gp?

Right, have called. Someone will be calling me back tomorrow as it's too late now.

Mortified at someone hearing a recording of me crying and whimpering in pain.

[Also for the record am having another laparoscopy soon, in case anyone starts to suggest treatment... that side is under control.]

No, I don't think so. As I understand it, things that can be measured, heart rate, blood pressure etc can demonstrate the severity of your pain, and if you're suffering a fever as well, paramedics would be able to tell how ill you are.

Although I have been very lucky with GPs I know they can be fairly useless, and it sounds as if yours is. Thing is, your GP isn't there when you're so desperately unwell. A hospital admission would demonstrate that you have health issues your GP can't just brush off.

I only once called an ambulance when my DS didn't need admitting. All the other times it was straight to the children's ward. When I apologized for calling them unnecessarily, the paramedics were lovely. Told me that calling an ambulance when you are genuinely frightened or in acute pain then calling an ambulance is never a waste of their time. What is a waste of their time is calling for one when one of your acrylic nails has broken or when your tv remote has got stuck down the sofa. These were real calls they had received.

You've done the right thing OP, they will want to know about this and, if the call is as you described, they will take action.

Don't let it put you off calling again if you need to.

It sounds really inappropriate OP, I'm sorry this happened to you. I had a similar incident where I phoned the mental health helpline in psychotic crisis and the man was lecturing me on what I had for lunch that day.

"A hospital admission would demonstrate that you have health issues your GP can't just brush off."

Or the gp could listen and accept that the patient knows their own body?

I work for 111 and what that health advisor did was inappropriate, unless they were a clinician and you asked for advice they should of completed the assessment and not gone into any other advice that is not given by the system.

You need to report this as it can be listened to and she can be given feedback, she wasted precious time in you getting to the service most appropriate by giving advice which might not be appropriate.

Report it! She needs to know what she did was wrong to do her job better next time.

hope you feel better soon

i can empathise with your pain - I used to pass out from the pain and yet my GP still wouldn't do anything except say 'next time you're like this, come in to the surgery' - not realising that because i was in so much pain, or unconscious, I was not likely to be able to get myself to the GP surgery! Unfortunatley I had a couple of incidences when I was away on business trips in other countries when I passed out - hotel policy to call an ambulance so i've been carted off in at least 3 countries to hospital because of it . Luckily I then found a private gynae who a) listened to me and b) got me treated with surgery to clear the endometriosis every 5 years. All sorted now after my DC . sorry, rambling, just wanted you to know that I understand how much pain you must have been in.

And yes, YANBU and i hope you manage to get the incident investigated.