Fibromyalgia Action UK
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NHS gastro/endo complaint - is it worth it??

Hi Fibro Family,

Hope you are feeling well this morning.

A follow-up and question about my gastroscopy/endoscopy experience earlier this month.

I did complain in a detailed email to the NHS and followed the correct complaints procedure. After sending the email, I got a reply by email from the Patients Complaints Officer. It explained that it would take up to 21 days to gather all the facts from the relevant staff and he would be writing back to me with the outcome. He also left contact details if I wanted to discuss anything. I rang a couple of days after and expressed my concern that if I complained about my treatment, the endoscopist and staff involved would probably cover themselves and I would get a flimsy apology. I also stressed to him that I wanted to bring awareness to Fibromyalgia and how crucial it is that we are listened to by the medical profession. He said all the right things on the phone and re-assured me that the department concerned would be made aware of future procedures done for Fibro patients.

I got the letter yesterday, going into detail about the procedure, and a flimsy apology that I found my experience to be unpleasant. I expected all of the above from them, but didn't expect to see that the endoscopy department actually told bare faced LIES, just to cover themselves.

At the end of the letter, he did mention that the head of the department would bring up Fibromyalgia at the next depatmental meeting. What is he planning to say, he has NO EXPERIENCE of what it's like.

What an insult, I was made to feel it was all my fault and I should have said NO instead of allowing them to carry on with the procedure if I felt uncomfortable....

I have been left traumatised by this, and keep having flashbacks of gagging and finding it hard to get my breath. I am over the physical side of things, but the emotional and psychological effects are still with me.

I'm not sure if I have the strength to take this matter any further, I feel like an idiot. However, I do not want anyone else to go through the same experience.

Before Fribro, it was in my nature to fight for what is right, but I may just lose this battle because they know how to weasle their way out of any reponsibility. I would love to have the strength to contact a big charity or even the newspapers highlight my experience, because the staff need to acknowledge that what they did was unacceptable.

What do people think?

Should I just leave it? Am I being over sensitive? Is it unhealthy to dwell on this?

Should I use my energy to keep well?

I appreciate your feedback.


p.s thinking of changing my user name to 'moanymoo'

8 Replies

I had a very similar experience when I only had ME, now I have have fibro too.

During the course of the initial investigations leading to my ME diagnosis, I had a gastroscopy to rule out other conditions. For that one the sedative they gave me was so strong I was out of it. I recall going under and I recall coming too as I was being wheeled out of the theatre into recovery but I don't remember anything about the procedure itself. Which in my book was a good thing.

However, about a year or 18 months later I was having severe stomach problems and had a second gastroscopy to discover what the issue was. The sedative I was given for this one was not as strong and unfortunately I remained conscious of everything. And it was a very unpleasant experience indeed that brought tears to my eyes because of the pain, discomfort and stress. Like you I still recall vividly gagging and gasping for breath. I not only have ME but one of my many symptoms is sore and inflamed throat and windpipe and voicebox issues frequently leading to loss of voice. Plus, even at 52, I am still unable to swallow tablets whole, partly because of this and partly because my orifices and tubes are quite small. All in all it was just about the most unpleasant and distressing experience I have ever been through.

My problem turned out to be acid reflux and I suspect part of the reason for gagging so much was to do with that. I know I will never have this procedure again unless they guarantee to put me out, especially as I now have fibro on top of everything else.

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Hi ukmsmi4,

Thank you for sharing your experience. From the replies i got from my original post, most Fibro sufferers warned me about how i would feel after the procedure. So I expected to be sore and there was a possibility for a flare-up. But if i had been sedated whch I signed up for in the first place, I would have very little or no memory of the procedure. The fact that I was not listened to and was persuaded to have the other option really upsets me. Like you, I know that if I have to have antything like this again I will insist being fully sedated.

E x


Hey. I had a gastroscopy 11 years ago in Slough to confirm my coeliac diagnosis. I too wasn't deep enough but not coherent either so I freaked out trying to pull the tube out. As a result of my reaction I was held down by two nurses. Not the best experience of my life.

I hope you manage to put it behind you as my experience of such things is that you won't change their attitude. Try to move on, think of yourself, not what you could do for others. I know that seems like a very self serving attitude but I spend so much of my time thinking about others welfare and it never seems to work out in my karmic favour so perhaps thinking of others to your own detriment is just self harm?

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Hi Lauraaa,

OMG that sounds terrible. I'm very grateful for your kind words.

I think I was slowly coming to that conclusion, but your reply has really helped.

I agree with you 100% I do need to concentrate on my own well being.

It is time to move on - because re-hashing it doesn't serve me.

Thanks again.


Hi there Ela😊

I'm so sorry that you have had such a bad experience and am pleased to some extent that you have at least had some sort of apology from the hospital but am horrified that they told you outright lies !!

Personally, I would be tempted to approach your MP, sending him your account of the experience and also a copy of the letter from the hospital. I have know of quite a few cases where when a person has got their MP involved there has been a much more positive outcome. Hospitals seem to take things much more seriously when they hear from an MP about complaints.

Sending you lots of positive and soothing vibes, and do please let us know how you get on 😊

Foggy x

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No, don't leave it. Complain that the poor apology goes no where near enough for the appalling treatment you received. Again bring up the lack of consideration and concern when you explained you have fibro and needed them to be aware of that fact and their subsequent attitude towards you.

I made a complaint to PALS over my cancer treatment and whilst they were helpful and considerate the investigation was anything but.

The reply went along the lines of "We are saddened to learn of your recent experience and will endeavour to make sure it doesn't happen again"

And, " We are sorry your treatment did not reach your expectations."

It means nothing doesn't it?

My cancer was a big distraction at that time and I felt I didn't have the will to complain further. I now wish I did because the poor treatment continued to be written into my notes, which I only found out by accident.

One example was I kept the porters waiting when they came to collect me for my operation while I went outside for a quick cigarette. This was a deliberate lie as the nursing staff had not prepared me in time and I was still in the shower. I did wonder when I went down to theatre why nobody was friendly, obviously I had kept the surgeon waiting.

I found out when I read my discharge notes after my knee replacement op a year later when the ward clerk wrote I was a smoker. I have never smoked in my life and yet this misinformation has carried on ever since, even though I have asked it to be corrected.

This was only one thing I complained about, there is a whole litany of errors and bad treatment which I should have followed up.

Looking back I should have made more of my initial complaint, it is really a bitter pill to swallow that I have left it too long, so yes, complain loudly and keep on until you get the result you want.

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I think that you have made a stand and raised your concerns and your grief with them! I want to sincerely and genuinely wish you all the best of luck with whatever you decide to do next.

All my hopes and dreams for you




I hope you are feeling strong today, I know there is nothing practical I can do to help you but you can always talk to us, we understand.

If you feel you need to stop now and look after yourself, then that is the right thing to do for you.

If you feel well enough I would encourage you to keep shouting about it. You may in the future regret not going further and still be angry about it.

Write back to the PAL officer and tell him your concerns about the 'mention' of FMS at the meeting, yes you are right how could they talk about what non of them know about! Give him some feedback on the flimsy apology and the lies.

I think going to your MP is a great idea

Also does your GP know what happened? You could make a complaint there and have it written in your note that you had a traumatic experience and refuse to go back to that department again

Whatever you decide we are here to support you

Take care xx


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