Gastoscopy and Endoscopy update - Fibromyalgia Acti...

Fibromyalgia Action UK

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Gastoscopy and Endoscopy update

Ladygelf profile image
12 Replies

Hi, First of all, I’d like to say thanks for all who shared their experience and for all the advice

I kept to my original appointment 1st Oct at 2.45pm. .My daughter’s boss agreed she could leave work early so she could pick me up after my procedure,

On the morning of the appointment, I got a phone call at 8.20am from a nurse who asked if I could come in that morning at 10.45 instead because there was a cancellation. I explained that I was having the sedation and had arranged for my daughter to pick me up at 5.pm. The Nurse said I could have the throat spray/gas and air option and I told her about my Fibro. She then said by the time I am checked in and gone through all the preparation, the procedure wouldn’t start until around 12.00 noon and it would be okay for me to wait until my daughter was able to pick me up, so I agreed to go in that morning and rang my daughter let her know.

Just before I left home, I telephoned the hospital and spoke to the same nurse to double check, it would be alright for me to stay until my daughter was able to pick me up.

When I arrived at the hospital, I was escorted to the pre-admissions room and seen by three different members of staff. I told each of them about my decision to have the sedation due to my Fibromyalgia. My conversation earlier with the nurse and that I would be waiting for my daughter to pick me up in the afternoon. They went through all the checks and I signed the various consent forms, including the section about the sedation and the details of who would be picking me up after. The third nurse to come in said she would need to double check that it would in fact be okay for me to stay and wait for my daughter. She asked what time my daughter was due and I said around 5 – 5.30pm she said okay and left me in the room. The Endoscopist then came in the pre-admissions room, and said there was a problem. He said it would be better for me to have the throat spray/gas and air option and I could go home sooner. I explained about the Fibro and the advice given by Fibro patients who had the procedure done previously. He replied, - ‘oh, but we can’t have you wait around for so long, we do it now, yes …. You can trust me ….. We’ll give it a try, I promise I’ll be really gentle and if we can, we can, if we can’t, we’ll stop, okay?......’

By that time it was after 12.00pm and I was totally drained from lack of sleep, all the form filling, the questions and the waiting around in the pre-admissions room. He was very persuasive – pushy!! - all the advice that I was given from fellow Fibro sufferers, went out the window. I could feel panic set in and I began to shut down. I feel really stupid now, I trusted him and didn’t listen to the little voice inside that was shouting at me, I did what I was told and followed him into the procedure room like a brainless zombie.

The whole experience was terrible, I gagged all the way through the gastroscopy, he shouted, ‘no, no, don’t do that, just breath….’ I felt everything during the endoscopy and at one time he even leaned on me. My eyes and nose were streaming and the nurse kept wiping sweat from my forehead and holding my hand. On top of that, I had a weird reaction to the oxygen/nasal cannula. My nose felt itchy and irritated throughout the two procedures and I ended up having a constant sneezing fit and my nose was streaming, this only began to ease off a bit yesterday.

I have been in bed since Thursday, and feel worse than I’ve felt in years. I had my ‘right to choose’ taken away from me and this endoscopist just wanted to rush me through, to make life easier for him. I now have come to the conclusion that the decision was made to ‘get me out early’ because they did not want to be responsible me for me longer than what was convenient for them.

I rang the department yesterday and spoke to the nurse (who initially called me to change my appointment). She has spoken to her manager and advised me to write to PALS to complain. I plan to write to the hospital chief executive also. This experience has been a hard lesson for me and I will always listen to my gut and to others with who have know from first hand experience. If I don’t take my condition seriously then neither will others.

Right now I feel isolated and depressed, my children are upset for me, but don’t really understand.

Sorry for the long post folks, just needed to vent.

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Ladygelf profile image
Ladygelf
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12 Replies
Betty67 profile image
Betty67

Oh vent away, and please complain. When i had a procedure it was fine that i stayed in all day rather than just a morning but i do remember the fight i had to have a ceasarian for second child after all the problems with the first.

But i do know how hard it is to fight an expert but on TV as I am writing this a senior nurse is saying staff need to listen. Gentle hug.

Poppy-poppy profile image
Poppy-poppy

Oh so sorry that you had to go through this very painful. Best wishes

lou1063 profile image
lou1063

What an awful experience, sounds like an awful ordeal. You must complain about this. These tests are never pleasant I'm so sorry you went through that. I hope you recover soon. Lou xx

bluebell99 profile image
bluebell99

What a terrible experience. It takes a very strong person to argue against authority figures, don't blame yourself for going ahead earlier than originally planned, you were in a vulnerable position.

You are right, we trust these people to look after our best interests and when they fail we feel cheated and wrong-footed.

Do complain to PALS, this man needs to be made aware of the consequences of not only not listening to you, but also in the education of fibromyalgia. He needs a rap over the knuckles and you need an apology.

I guess the clinic had a cancellation and slotted you in so they could finish earlier, but you would probably have a hard time proving it.

Make sure you follow up on PALS. I made a complaint and hadn't heard anything so assumed it was all being investigated. Three months later I phoned to discover it had been missed off the system.

Keep at it until you get the response you deserve. We are all behind you.

aud01 profile image
aud01

that is absolutely shocking . I am so sorry you had to go trough that .. make sure ou complain and keep us posted as how you are feeling ... plenty rest not that you have any choice ...... anyway take care and big hugs xxx

BlueMermaid3 profile image
BlueMermaid3

Hello ella

That is exactly what happened to me!! I only had the Gastroscopy and insisted I needed the sedation. I explained that I'd already had one without sedation and that my gag reflex was too strong and that the whole thing had been a complete nightmare.

I've had many procedures and operations, so I do unfortunately know all about sedation and general etc. They put a needle in my hand but only put saline in it, not sedation. I was wide awake throughout the procedure and it was horrific.

When I came out I said that I had not had the sedation and the nurse patronisingly told me that the doctor had come and spoken to me whilst I was in there and because I had sedation I didn't remember. I said no, she did not speak to me. The nurse looked at me in a way that said see you don't remember and went away.

The doctor then came to see me and apologised for not having seen me in the room! Like you, they pushed me through the procedure without sedation, to get to an emergency admission as it was about 5pm. That's fair enough, but tell me the truth.

I only had that one last year and thinking back now, no one asked me if I had transport home. If I had indeed had the sedation would they not have needed to check about that?!

I was laid up afterwards too. I didn't want to go into too much detail when I answered your post as I didn't want to scare or worry you.

I wish now that I had complained. They weren't honest with me. I would rather have come back another day. I don't think they are giving sedation to very many people at all now due to the heavy financial burden on the NHS, but you need to trust the doctors and nurses.

Let us know how you get on with your complaint. I really wish I had complained now, but I am glad that they were able to get to the emergency admission as it was an elderly lady.

I hope you start to feel a bit more like yourself soon.

Gentle hugs Lu xx

Lolis profile image
Lolis in reply to BlueMermaid3

Please if you feel this strongly, do complain. I don't think it is ever too late. Trust in medical staff is important. I feel like the medical community seems to treat the public with contempt, like we are stupid so it doesn't matter how they treat us. Take care xx

Regnofibro1 profile image
Regnofibro1

Please complain that was not right at all. So sorry you had to go through that. How awful it must have been for you! Get better soon!

Lolis profile image
Lolis

Hello Ela808

I am so sorry that they did this to you, it still makes me angry that they felt they could treat you this way.

I really hope you do complain, I know it is not easy when we feel so awful but if we do not stand up for ourselves then they will carry on treating patients badly. They need to know it is unacceptable.

I hope you feel better soon, Take care xx

rosewine profile image
rosewine

What an absolutely horrendous experience for you to have to go through. It seems as though it had put you into a bad flare. It does seem as though they rushed you through for their own purpose. My husband had that procedure and his experience was so good as the staff were so kind and reassuring all through.

I would say complain because otherwise the authorities will be unaware of what is going on and if enough people complain hopefully something will be done so others don't have to suffer in the future.

Do hope you start to feel better soon and that you are given the all clear.x

Oh no 😰 I feel for you. I foolishly opted for the throat spray but as junior doctor stuck tube in my cheek three times rather than down my throat I told them to sedate me. I was definitely still awake though during the procedure and was aware of everything said and done. I thought they didn't give me the full anaesthic to save having to give me tea and toast when I came round! Maybe it was so they could finish early though! 😳 Good luck with the complaint. Funny when I went back to see the gastroenterologist he told me HE completed the procedure... Eh no!! Must think we are stupid!! I should have complained too but didn't - take care and look after yourself xx

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read of your terrible ordeal, and I sincerely hope that you can some resolution to this when you complain. I have pasted you the Link to PALS below in case you need the contact details:

nhs.uk/chq/Pages/1082.aspx?...

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

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