Dear NHS hospital

I know you’re understaffed. I get that it’s a problem and things don’t get done as fast as you would like because there’s just not the people to do it. I appreciate that you don’t charge me and that my healthcare is entirely free. But if I don’t complain, how will you know where the problems are?

I have a chronic illness- ME, fibromyalgia, chronic migraines. And I went to A and E on Saturday night. For me to give in and go to A and E, the place I hate most in the world is a big deal but in fact I suggested it. I didn’t even have to be pursuaded by mum. At half past midnight on a Sunday morning just before Christmas. I’m starting at the beginning though the bigger problems come towards the end. 

I was screaming in pain from abdominal pain. As such, I quickly got taken through for blood tests and into the area with hospital beds. A patient screaming in a waiting room just doesn’t look good. 

Then was problem one- they got my patient details wrong. Mistakes are made though so no big deal. It was quickly rectified. 

Then was problem two- they tried to do something on the computer to get my blood tests logged and an update was being done on the computer. Again, this is something that needs to be done so no big deal. The bigger problem was that staff hadn’t been told this update was happening. It wasn’t hitting all computers at once so another one could be used. But time was wasted trying to work out the problem.  

I had my blood tests done and got taken through to the back rather than put back in the waiting room. I then didn’t see anyone for an hour but I had been warned waiting times were long, so I expected that.

Problem three- at one point a nurse came in to take blood tests, which I had already had. She had got the wrong patient. Mistakes are made so no big deal but this is the second mistake so far. 

At this point I was lying on a hard gurney. The proper hospital beds are much more comfortable, and by the time I was put on a proper hospital beds there was several available. I have ME and fibromyalgia. I was crying in pain from those conditions and screaming when they took my blood pressure or whenever anyone touched me. It would have been much appreciated if they could have got me into a proper hospital bed sooner. But they’re busy so I get it. 

Problem 3.5 (I’d forgotten this one and I can’t be bothered changing the numbers)- there were no pillows in A and E, which they’ve had in the past when I’ve been there. Lots of people are there overnight. Having basics like pillows seems an easy way to make people more comfortable and maybe able to get some sleep.

Problem number 4- at around 4am I was given painkillers. I couldn’t have taken them any earlier because I had taken some shortly before I arrived. I was given paracetamol and buscopan. Now I’m normally on codeine, so unsurprisingly, the paracetamol and buscopan didn’t do much.

Problem number 5- the paracetamol was given through a drip, apparently to make it more effective. The drip wasn’t set up properly and was only corrected after I had had x rays and was asked if it had been turned off for the x ray. Mistakes are made sometimes but this is mistake number three so far.

I wasn’t told what was going on for most of the time I was there. But I was given an examination by an A and E doctor and was sent for a stomach x ray in the early hours of the morning. 

Problem number 6- during the examination, my mum asked me if I wanted her to leave the room. The doctor replied that it wasn’t necessary yet (as in I wasn’t taking my clothes off yet), but still it is up to me whether my mum leaves the room or not as I’m 24 years old. The doctor shouldn’t be answering for me.

After the x ray, I got put on fluids. I took this to mean that I still wasn’t allowed to eat or drink anything. 

Problem number 7- the fluids IV wasn’t put on properly. It was supposed to be an 8 hour bag. It was put on about 6am and when I had it taken out at 1pm (after 7 hours), it had only gone down about one quarter according to the markings on the bag. During the 7 hours I had it on, it was fiddled with several times by nurses when we kept saying it wasn’t going down. 

After the IV bag got put on, I saw a medic doctor that had come down from the wards. She told me I was going to be admitted. And this led me to becoming hysterical after she left. I have a fear of people touching me and was thinking ‘how much more can I take?’. I was also exhausted and in a lot of pain and just wanted to go home to sleep. I was close to having a panic attack.

Problem 8- the A and E doctor came back to calm me down. She wasn’t actually reassuring in any way but told me it was important I stayed at the hospital because I had an infection in my bowel, which could become serious if I went home. And that I probably had ulcerative colitis. The consultant later told me that I don’t have an infection and there’s a chance I might have ulcerative colitis but it’s not likely. The news I had an infection and probable ulcerative colitis was not presented as a medical opinion or a ‘we think it’s this…’ but as if it was a diagnosis. This terrified me and actually made my anxiety worse.

Shortly after this, there was shift change and I got a new nurse. She moved me to a hospital bed, ready to go up to the ward, and it was much comfier though I was already in a lot of pain so it didn’t make a huge difference.

Problem number 9- when I sat on the hospital bed I got wet and it seemed the bed hadn’t been dried properly after cleaning it before the sheet was put on. Again, I understand that mistakes happen sometimes but there’s seeming to be a lot of them. 

During all this time, I kept asking whether I was allowed to eat or drink yet as I was feeling sick and needed to eat. I kept being told by nurses that they would check for me and they never got back to me.

Problem number 10- when breakfast went round, I told the breakfast person that I didn’t think I was allowed to eat. She went and checked for me and quickly came back to say that I was. How long was I left not eating when I could have been eating? And more importantly if they were worried about my fluids, how long was I left not drinking when I could have been drinking?

At some point during this I was eventually allowed to take my codeine medication. 

Problem 11- I got taken up to the ward and there was no drip stand. The entire time I was in the ward (several hours), my drip was attached to the bottom of the tv with a plastic glove. 

Problem 12- I was asked questions and told I would have to do mrsa swabs and the nurse would be back in 20 minutes to do the swabs. The swabs didn’t actually get done for a couple of hours. If I wasn’t expecting her to come back any minute, I would have tried to get some sleep.

We waited for the consultant to come and do his rounds.

Problem 13- while waiting, some doctors came to see the patient in the bed next to me. She was mostly deaf and you had to shout to talk to her so I heard much of their conversation. The patient was Austrian and a young person who was following the doctor was half German and half Austrian. As the doctors walked away, just as they were going past the end of my bed, one of them said they can’t stand the Austrian accent. Both racist and rude. Disrespectful to the student, and to the patient if her hearing was good enough to hear the comment. 

The consultant eventually came round and was brilliant. He suggested a medication I could have and said I could be discharged to take the medication at home. 

While I was waiting to be discharged I kept asking when my medications were due, as I was in a lot of pain and I felt like it might have been the necessary four hours. The nurses kept not getting back to me with the information.

Problem 14- after two hours of asking, a nurse finally told me when my medications were due. She told me I had taken the codeine between 7am and 9am. For such a strong medication that can easily be overdosed on, why didn’t they know the exact time? We checked the time of other meds and I was told they didn’t have the exact details from A and E, even though the A and E nurse had handed over all of my notes and they were in the same hospital! By the time I found this out it was after 1pm so I could take more anyway but I was annoyed that they hadn’t correctly noted down the time I had taken my meds. These meds are incredibly important to me as someone with a chronic pain condition and at home I write down the precise time and often count down the last few minutes until I can take more. They clearly had no understanding of ME and fibromyalgia.

Problem 15- while waiting to find out my medication times, the pharmacist came to see me. She couldn’t give me the medication that the consultant had said because that could only be prescribed by the specialist. She suggested another medication which I unwillingly agreed to. It turns out after taking one dose of that medication, that it’s not suitable for me. It can cause muscle twitches which I already have and were made more severe by the medication. When looking at the leaflet, there are several conditions I fulfil under the ‘do not take if’ section. Therefore, along with the twitching  side effects, I am not happy taking the medication with only a pharmacist having said it’s okay, not a specialist. Fortunately my specialist appointment is on the 21st (10 days after the hospital visit) as it was already booked weeks ago.

The specialist appointment was supposed to be a rapid referral after my last A and E visit and was supposed to take 2-3 weeks until my appointment, and it’s actually going to be 7 weeks. It’s not at the same hospital but it’s under the same commissioner.

When I finally got discharged, my cannula was taken out of my arm by a nurse.

Problem 16- she wasn’t very gentle with it, not properly removing the sticky before pulling out the needle, and honestly I could have done a better job myself.