NHS refusing GA for painful procedure after failed sedation experiences

[JackieAndJu]

I've been told I need to have a fairly minor but painful diagnostic procedure, which I have had three times before.

It was previously tried doing the procedure under sedation but the sedation didn't work - they might as well have injected me with caffeine, I was so alert - and it had to be abandoned, and thereafter I had it done under GA. This was privately.

My condition has worsened and I'm now on an urgent pathway, which isn't covered by my insurance. The NHS have offered sedation but simply won't accept that sedation does not work on me, and are refusing a GA. I'm now stuck in limbo.

I wondered if anyone had experience of this or advice on how I can get them to listen.

I recently had a procedure under NHS and two anaesthetists discussed everything with me. The first time I had a GA and the second, I was sedated with intravenous drugs through a cannula. I was awake but felt nothing. I remember watching a screen of the process but subsequently cannot remember anything. You will have an opportunity to discuss with the consultant and then anaesthetist @JackieAndJu and you can refuse to go
ahead at any point.

I have a GA for endoscopies now. I have 2/3 a year, but have had at least thirty in the past. I told them that I find them traumatic under sedation (they last a long time and I have an NJ inserted), and that I've have had enough to say no to anything else.

Are you a redhead? 🔥 Apparently redheads can require higher doses to be properly knocked out 😊

I’m a clinical lead in the NHS. Definitely do not turn up on the day expecting GA or Propafol for a routine diagnostic outpatient procedure, it will just be cancelled if you don’t agree to their usual sedation, as you need an anaesthetic team and equipment for both of those. In an outpatient setting that can require a lot of planning, including coordinating rotas and financial agreements etc that can take weeks to arrange and be approved.

I had a patient with significant learning disabilities whose first procedure was cancelled as they did not tolerate our usual sedation (Midazolam and Fentanyl). It took over 6 weeks and we had to fight tooth and nail to get the procedure approved to happen under GA, it was then cancelled multiple times due to staffing and issues with finance.

I would hope your hospital would be better organised than the one I work at, but I’ve worked at huge tertiary centres and it still can take weeks to be arranged, it’s not something that can just be done on the day.

I just want to say I'm really sorry you're going through this. I have the same issue in that local anaesthetic doesn't always work on me. I think it depends who is doing it and what strength they use, because sometimes it's fine but more often it's not. Or wears off after a few minutes . The last but one procedure I needed 3x the usual amount the average person has. That was after the entire ward in the hospital were able to tell my anaesthetic hadn't worked as I had to scream the place down to get them to stop. For the second time that day, another team had tried something different but same outcome earlier. The last time it was the same doctor again which was great as he didn't mess about, brought down the stronger stuff and IV morphine as needed. I've ended up with PTSD though from this. I was meant to have a steroid injection in my shoulder last week. No mention in the pre appointment notes that he'd want to inject local anaesthetic first. I tried explaining what had happened and I'd need more but he pushed back, just like they always have. I couldn't go through with the injection so that's that. I'm not going to be able to go through with any more, I'm done with the agonising pain of procedures without decent pain relief and fucking doctors who've never met you before but have a god complex and dismiss your concerns. Then they have the audacity to act surprised when it goes wrong. I've got to have carpal tunnel release on both wrists and I'm not quite sure what alternatives might be possible.

my understanding is that possible causes for this local anaesthetic intolerance are ehlers danos syndrome, ginger hair and ADHD. I'm paying for a private psychiatric assessment next month, I can't carry on like this - going back to square one PTSD every time someone tries to give me a local and I'm certainly not tough enough to go through it again without some help. I've waited 6 months for NHS MH and need to sort this out now, if I wait for the NHS offering I fear I could be waiting years.

The thing I have learned to ask for is a pre-surgical anesthesia appointment. Not a phone call or a message. A large portion of my day for a conversation at the hospital with someone actually on the anesthesia staff. They take a full history and identify my risk factors. Then we come up with a plan that will work for the particular procedure and my special snowflake body.

I have only had one anesthesiologist refuse to follow the plan once we get to the actual day. She was an absolute bitch and I almost decided to cancel the surgery, but I was desperate. It did not go well. My only solace is that as tough as the experience was for me, it also had to have been a difficult shift for her.

My favorite was when I had a surgery with a local block that is generally done with either GA or a local block plus sedation. I was just chatting with the staff and it absolutely freaked out the surgeon when he walked in. He knew about the whole thing because we had to do it at a special facility, but he didn’t really think about what that meant I guess.

I was going to ask that. I’m a redhead and struggle with any anaesthetic

Do you happen to also be hypermobile? I ask because people with hEDS seem to have issues with sedation not working or needing significantly more in order for it to work.

I would see if you can speak with the anaesthetist as they will be best placed to be able to help you and if you arent comfortable on the day you can refuse the procedure but I would see if you can speak to them in advance.

Please, just tell us what the procedure is. People are assuming colonoscopy, but I haven't seen you say that. If you tell us, then we can better try to help you

You haven't explained enough for people to help you.

What procedure is it?
What steps have you already taken to complain?

If the GP SHOULD have passed on info that WOULD have enabled you to have the GA, you have grounds for complaint and correction.

Have you got confirmation that the procedure is ever done under GA by the NHS?
Have you discussed the issue with your GP?
Have you spoken to PALS?
Have you located your Trust's complaints policy?
Have you formally complained in writing?

I had a colonoscopy under a GA as I can't cope with just sedation. They really don't want to do this and try everything to change your mind. Only problem was I then had to go on a waiting list for this to happen, so things were delayed, but it did eventually happen under a GA.

When I have had sedation, despite telling them my fears and how anxious I am , they don't give it time to work and don't give enough of it to work. I felt like I was on a conveyer belt, one in, one out!

fascinating isn’t it as a blonde with some red tone I have the exact same issues, I’ve had 2 GAs and both times come out of the anesthesia too early and had to be sedated and drugged with a cocktail of fentanyl and god knows what else.

The decision re sedation/anaesthesia is nothing to do with the GP (unless they’re doing the procedure) - it’s a discussion to be had with the consultant responsible for the procedure and the patient +/- an anaesthetist as necessary.

the admin team don’t decide (if that’s what the OP means by ‘gatekeepers’) how things get done but do know what’s typical and can highlight to the clinical team people who have concerns.

no one is ‘immune’ to sedation - almost all of the ‘sedatives’ will cause GA if you give enough of them (that’s why there are sensible, safe limits on what can usually be given by people who don’t have advanced airway skills/experience using the punchy drugs anaesthetists use to manage the cardiovascular effects of some of these drugs). Some medical conditions affect how bold one can be with sedation in an outpatient setting (eg. people with obesity, acid reflux, cardiac history, etc).

different procedures have different requirements depending on whether they’re painful/need someone to be still/how long they take/whether they’re need a patient to participate and do things during the procedure to complete.

the redhead/hypermobile thing isn’t terribly clear cut despite what the enormous amounts of stuff online might say - sedation/GA (and even LA) is more complex than that. No two patients are exactly the same and there are a million and one reasons that more/less sedation might be needed.

best bet to resolve this issue to speak to one of the consultants in the department (ideally the one actually doing the list/nominally covering the list) and go through things with them. It makes absolutely no sense in terms of healthcare economics to have people routinely turning up for procedures that won’t be complete so they may just agree on sourcing a GA list, but equally they may be able to suggest a different approach to getting it done without GA. They will also have a better grasp on how urgent a procedure is and how long its sensible to wait - there are barely enough anaesthetists to cover all the stuff that definitely routinely needs us and it may be worth having a go with sedation if it avoids a significant delay - no two experiences are ever the same (even with GA).

Thank you for so many helpful replies and insights.

I'm not a red head! I'm grey now but my hair used to be mouse brown.

Interestingly, I am hypermobile. Unrelated to this procedure, I have physio due to joint pain caused by hypermobility; my knees and elbows both go about 15 degrees the 'wrong way' on lock and my I can touch my wrists/thumbs to my inner arms. EDS has not been mentioned, I could ask my physio about it.

I have googled and some NHS trusts seem to offer this procedure under GA - I've found various 'patient information' leaflets to that effect - but nothing for mine.

I will see if it is possible to talk to an anaesthetist when they come back to me - I have left it with them at the moment - but I am really, really scared of being awake during this procedure, it's not just the pain/discomfort, it's the sense of panic I feel.

I am struggling to contact PALS as I can only find an email for my area and it's bouncing emails back.

Thank you again, and I am sorry for those of you who have had similar bad sedation experiences.

I think they don't routinely offer anaesthetist lead sedation where you are then OP - which is why they mention GA I assume. Be assured though, anaesthetist lead 'enhanced' sedation will work. I think folks keep defining 'sedation' as only the endoscopist lead stuff.

Have a look up the beighton score, this isnt the only marker for EDS but is one thing to look at hypermobile level. You can find a gp toolkit that offers a checklist for hypermobile EDS but there are other types that may need consideration too. Unfortunately EDS is one of those things thats very hard to get help for, Rheumatologists now refuse to deal with it, GPs dont have enough knowledge and a general physio may not have enough specialist knowledge. It makes it hard to get the right support without going private.

But one of the things that seems quite common is issues with anaesthetic and a need for much higher levels of sedation

But depending on what the procedure is, there may be alternatives.

My Daughter needs an endoscopy but she absolutely will not have it done with sedation so we are looking at alternative options. She has EDS and wont even risk sedation as she has issues with a strong gag reflex and anxiety so we are looking at what else can be done. Depending on what the procedure is, there can sometimes be alternative options but they are less offered as they are less used, more expensive etc but can be offered if needed. And it sounds like there is a need with you, given that you react to anaesthetic differently.

I would definitely get onto pals and ask if they can look at other options if GA isnt the best option

Hi op.

Also hypermobile and I go absolutely nuts when I go in and out of GA. I fight the bed, the nurse etc.

Need many injections of local to work if I'm having dental work.

Good luck, this is a valid reason to need more anaesthetic.

Definitely follow up a potential diagnosis as ime medics are much more understanding about you saying “anaesthetic doesn’t work effectively “ when you have an EDS diagnosis.

Thank you - I can definitely mention the hypermobility to the consultant as that has been confirmed by physio.

I was researching EDS and I do have a couple of other symptoms - the skin scarring and the overcrowded palate (had to have teeth removed in childhood as palate too narrow for them) so this is looking like a possibility, but actually getting a diagnosis of/ruling out EDS looks like it might be a long haul from what I have seen.