"Kidney infection, autism and hospital"

About: Western Infirmary/Gartnavel General

(as the patient),

After being treated for a kidney infection for several weeks by my GP and not responding to 4 different antibiotics I was referred to the urologists at the Western Infirmary and admitted to Ward 10 West.

I believe the nursing staff and doctors were all aware that I am on the autism spectrum, but I was left alone for hours, terrified and with no idea what was happening. The doctor in A&E told me I would be admitted for an ultrasound scan and given IV antibiotics. I was taken to the ward and told nothing else. I didn't even know what ward I was on. I was nil-by-mouth due to waiting for a scan, but after 5 hours (at dinner) I was told the scan wouldn't be until tomorrow and I was being kept overnight.

I was confused and the doctors didn't talk to me. They just prodded my side where I was in pain and left. My parents had to ask why I wasn't on antibiotics. They were told my urine hadn't shown any signs of infection.

I sat and rocked from anxiety and pain the entire night. I didn't sleep at all. Nobody checked on me, asked if I was okay or offered me any painkillers except paracetamol - despite me normally taking a high dose of ibuprofen.

The next day I was in so much pain and so exhausted I spent several hours crying. Again, nobody checked on me or asked if I was okay. I was sent off to have an ultrasound and an x-ray and not allowed to eat or drink (even water) until almost 6pm. My mum had to ask the auxiliary nurse several times just to give me some water. My blood pressure dropped and I almost passed out from being so tired and dehydrated. I ended up being half asleep-half passed out and missed the doctors rounds.

The next day I was told that the tests had shown nothing and I was being discharged. I asked about the pain and the consultant told me to 'hope' it went away. I sat in an increasingly anxious and stressed out state waiting from a full day to be discharged. I do not cope well with changes or waiting this wasn't good.

The fact that I was made to have heparin injections every evening also made me very distressed. Nobody explained what it was they were injecting me with on the first night, and the second night I was just told it was to 'stop blood clots'. I was left with a massive, very painful bruise. On the third day (while waiting to be discharged! ) the nurse came over with the injection and I had to literally beg her not to give it to me. My GP expressed surprise about why I would need these injections. I was only admitted short term, I was moving around, and have no risk factors for blood clots. Why does there seem to be this policy to just give these VERY painful injections to everyone?

Throughout my stay on the ward I was often ignored while I was panicking or in a very distressed state. The nurses were clearly very understaffed but just someone taking a couple of minutes to calm me down would have shown some compassion.

I have chronic back and joint problems that were made much worse in hospital. I had an old fashioned bed that did not have anything to raise the top/pillow area, so I spent the majority of the time sitting awkwardly hunched over on a flat bed. This was hardly ideal and I couldn't understand why I was not given a more modern reclining bed when there were plenty free in my own ward!

Basic care needs were a real issue. Water should have been a major priority for someone with a kidney problem. I was frequently told to 'drink plenty' but then had to wait 3 hours for some water.

Painkillers are also a basic need but I was made to feel like a junkie. I am in hospital with real pain. If I tell you paracetamol doesn't help then don't treat me like a child and tell me I'm 'not allowed' anything stronger until I've tried it! What is the point in making patients rate their pain if you don't listen to them?

Lastly, there was a real shocking lack of communication. It's important for anyone admitted to hospital to be told basic information like where they are and what is happening, but even more so for someone like me who has a developmental disorder and will get incredibly anxious and distressed if they are suddenly admitted to hospital and not told anything. If my parents hadn't been able to visit every day (despite living over an hour away) then I would have been even more anxious and distressed. It doesn't take long to reassure someone or ask if they're okay.

Also - after the doctors basically making out there was nothing they could find and making me feel like I was imagining my pain my GP checked the results and they actually did show I still had some infection! So much for getting told the correct information.

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Response from Paul Cannon, Head of Administration, Acute Services Division, Greater Glasgow & Clyde NHS

Thank you for taking the time and trouble to provide your feedback.

I am sorry that this posting was not acknowledged at the time, we had a break in our use of Patient Opinion, but we have now resumed doing so, and I thought it was still important to acknowledge your posting.

You raised a number of issues that are of concern and I have passed your comments on to the manager responsible for these services to share your experience with local staff.


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Update posted by phoebemonkey (the patient)

Although I was disappointed that NHS GGC seemed to have stopped using Patient Opinion I am glad to see you have resumed doing so again.

I really hope that staff could learn from my post - it would be helpful to ensure there are members of staff who have autism awareness training. The Autism Resource Centre provides one-day autism awareness training. Since there are 1 in 100 people in Scotland with an autism spectrum disorder, staff really should at least have basic awareness. The National Autistic Society provide information sheets for hospital/medical staff.

As I said in my post, I made it very clear that I have autism, as did my parents. However instead of staff trying to reassure me/communicate to me what was happening, the majority seemed to think that since they didn't know how to deal with me it would be better just to ignore me.

My mother used to be a NHS nurse in the 1980s and she was shocked at the attitudes of some of the members of staff.

Perhaps if staff (nurses, doctors and consultants included) had taken the time to listen to me and investigate my illness fully I would not have had to resort to accessing private healthcare or still be unwell 3 months later.