When you go to the A&E department in a hospital you do so because you are in serious need of medical attention and you expect for the doctors to help you in any way that they can.
I had no idea how wrong my outlook was and what was waiting for me when I walked (well, stumbled) into the Accident and Emergency department at Russell’s Hall in Dudley (or Russell’s Hell as I soon came to call it).
I have an ileostomy (but still have my large intestine and rectum which aren’t in use) and I had been having problems with my rectum for three weeks before my admission with urgency needing the toilet and soiling myself with blood and mucus to the point it was just constantly pouring out of me and I was crippled in pain.
I got on with it and went about my days but on the Monday I was in work and slowly as the day drew on it became unbearable, to the point where I had finished work and I was then unable to walk. I fell into a heap on the floor crying trying to move and physically couldn’t.
My friend came and picked me up (thanks Po) and took me to the closest hospital and I stumbled into A&E barely able to hold myself up, legs trembling and huddled over in agony. I was constantly telling the receptionists I couldn’t stand for much longer but was told to just wait in the queue for the desk. I ended up sitting on the floor.
After I finally reached the check-in desk I went to sit down. Fifteen minutes later I was called into the initial assessment room and due to how bad my obs were, was taken straight into a cubicle in Majors. My only good experience of this hospital happened here; my doctor was so lovely and she did tests which showed shadowing in my unused large intestine and my rectum had collapsed.
At this point I was being prepped for admission but not actually told, but I knew it was happening. I’d been in enough to know protocol. I was then given a full dose of morphine into my cannula and I finally felt some relief.
I was taken up to the gastro surgical ward – but this is when it began to snowball over the course of my one month stay.
I was in the triage unit as there were no beds available and I’m not sure if you’re aware, but by law you are not meant to be in this sector on a trolley for more than 24 hours.
I was lying there hooked up to drips, morphine injections and praying for help and I was barely seen at all; hearing patients coming and going and being given beds, I felt completely forgotten about – but I was in too much pain to move or kick up a fuss.
I then exceeded the 24 hours and it wasn’t until I pointed this out to them that they began to rush around me and I finally got a bed on the surgical gastro ward (after trying to give me a bed on a completely different ward which I refused).
I’ve always been told I’m a complicated case so this was nothing new for me and the doctors didn’t really have a clue what to do with me, so just focused on my pain. There was talks of endoscopy, colonoscopy, flexi-sigmoidoscopy, CT scans and many other tests which did not seem to be happening.
Time drew on and I was now two weeks into my stay and was losing weight because I was throwing up non-stop after being taken off the IV Cyclizene. I was losing blood from my stoma and my rectum and the pain was off the charts. But for some reason, no nurses were ever documenting my blood loss.
A doctor came to see me and told me that if I agreed to move up to the medical gastro ward/intestinal failure unit they could take better care of me, so of course why would I not? How wrong I was to think they meant it.
One of the many issues I faced was going 26 hours without any of my IV medications because they couldn’t get a cannula in, to the point where injections into my thigh were considered. Thanks shit veins.
I was told I’d be having a flexi-sigmoidoscopy but said I needed an enema to prep. I argued this because of having an ileostomy there is no need for prep. The doctor tried saying ‘But you pass motions through your rectum still and the shadowing could possibly be stool’. No, no. I don’t, and no it wasn’t. Idiot.
I reluctantly agreed to the enema and lay on my side, as soon as the nurse began I was screaming at the top of my lungs with tears streaming down my face. I was begging her to stop because I was in excruciating pain. I tried to wriggle away from her which is when she used her other arm to pin me down on the bed.
She told me to wait there for ten minutes but I shot up and got to the toilet. I was sitting there for half an hour screaming and crying texting my friends begging for help. I had blood constantly gushing out of my rectum and the pain was like nothing I could explain. But it didn’t stop there.
The nurse came in saying I was being dramatic, that it was just mucus. She proceeded to try to pull me off the toilet on more than one occasion and I used the only strength I had left in me to resist. They kept telling me the porter had come for me to go down for the procedure and tried saying that the reason I didn’t want to go down was because I was scared – not that I was bleeding out of my bum or anything in pain.
Eventually another nurse came in and they both grabbed an arm and pulled me off the toilet with me screaming that it was illegal and wrong. They then shoved a pad on me without even pulling my bottoms up properly and chucked me on a bed that was waiting for me outside of the toilet.
I was screaming and crying in pain the whole way down to the unit, not even taking into account the amount of dignity that had been ripped away from me by the nurses.
When I arrived down there the gastro doctor took one look at me and I could hear him asking what the hell had happened and he refused to do the procedure. He was so lovely and knelt down next to me talking to me whilst my obs were done, which were alarmingly high. Immediately I was given sedatives and morphine but I was still in such a bad way. I was then rushed to X-ray because they thought they had perforated my bowel with the enema and I had internal bleeding but thankfully this wasn’t the case.
I continued to be treated awfully.
The next day a good friend of mine came to visit me in the afternoon and I completely broke down crying to her about how I was being treated and the horrible nurse who did the enema came over and began having a go at me saying ‘I was putting it on’ and that ‘I’d be on my phone in no pain all day quite content’. Yes, I was on my phone but in no means was I not in pain – which she fully knew and ignored. She was telling my friend that I was putting on a show just for her.
My friend consoled me before she had to leave and on her way out the nurse said to her ‘I just want you to know she was fine earlier she’s putting it on’, to which my friend responded ‘I have just been in myself and was in pain the whole time and only cried once. You don’t have to cry to be in pain’, and walked off. Great care right? I put in a complaint and this nurse wasn’t allowed to come near me again, I don’t even know how she is a nurse.
Many other instances kept happening with them lying on my food and fluid chart – stating I was having a lot more than I actually was, to the point I began filling it out myself. I am a vegetarian with a stoma and this made my food options even slimmer, regardless of the fact I was struggling to eat and drink this made it even more difficult.
I was constantly told a nutritionist was coming to see me but not once did they. I was put on Fortisips and then when my meds chart was updated because it was full they weren’t transferred over to it so I didn’t even have them again, it was a vicious cycle of neglect.
I was being left to wither away.
To my dismay a week after the first failed attempt at the flexi sigmoidoscopy, I was told another had been scheduled and I was going to be awake for it. I was filled with instant fear but agreed. My cannula had come out of my vein for the what felt like the hundredth time so when I was waiting in the prep area I had to constantly ask for one to be put in so I could at least have sedation, which they eventually did. They agreed no enema was needed (duh) and I was taken in for this test to be carried out. They used water to inflate my bowel and immediately I was screaming in agony. They put the camera in and I screamed even more. They changed it to the camera used for children and my bowel still couldn’t handle it. They only managed to get 10cm in before they had to pull the camera out due to the extreme pain I was in. I was given 100mg of Fentinol which I was told should knock me out, but nope, I was wide awake screaming in pain.
The nurse turned to me and said ‘Calm down you’ll be scaring all of the other patients’. I remember thinking ‘are you for real?!’
I was taken into the recovery part, once again with tears streaming down my face as I was in the most agonising pain. I was left there for half an hour with nobody checking on me before they came over saying plan A was to take me back to my ward so I could be given morphine and that they had no plan B.
I was taken back up still screaming and crying, I arrived on the ward with my curtains quickly drawn and I was screaming that my stoma looked like it was prolapsing because of the pain causing pressure in my abdomen, to at which point a surgical consult was called for if necessary to be rushed in. I could barely move or go to the toilet because of the pain so two very nice HCAs carried me onto a commode until I could go and then put a pad on and helped me back into the bed.
I had been given IV morphine and it didn’t touch me. I was in a state to the point they asked for somebody to phone for me. They rang my best friend and she rushed to the hospital to find me screaming and writhing in pain. I recall her words ‘No this is not right, why the fuck have you been left here?’ She caused a stink and they came back giving me more morphine and she spoon-fed me some mushed up food to try give me some energy even though I had to keep taking a break for my sick bowl.
She really was my knight in shining armour. I spent a total of 4 hours screaming in the worst pain of my life with such little care from the doctors. Eventually morphine started working after a few full doses and I got relief. But I’d like to add that through all of this my obs were not done once, especially because I have a heart condition, you’d think this would be a concern with the strain being put on my heart.
My mum drove down from Cheshire for a meeting with the doctors about my poor care but didn’t manage to get anywhere. They were just set on managing my pain so I could be treated outpatient.
It was now a month in hospital and my pain was more managed with two forms of morphine and multiple other medications which all of which I am still on. Two months after discharge.
They were set on discharging me and I didn’t have any fight left in me so gave up and agreed, they had ignored me the entire time that I was in that I was having mobility issues with my right leg, uncontrollable shakes to the point it would give way and I’d fall down. Luckily my favourite support worker asked her friend who was a physio there to come see me and she brought along an occupational therapist also. I was assessed for home as it was already decided I was to be discharged and they were not happy. I was deemed high risk for stairs, falls and getting off the toilet etc. It was the first time I actually felt like I got good care at that hospital and was given some aids for home whilst I needed them.
Saturday came around and I was discharged. I was very happy to be out of the hospital but I was in no state to be discharged. I’ve been back in the majors department three times (once in an ambulance) since then.
I’m currently awaiting an appointment at my own hospital with my specialist and my referral to the chronic pain team.
So much happened to me whilst I was there it’s hard to summarise, I left worse than when I arrived and no answers and a heap of medications. I will never forget being told ‘You can always come back if you’re not coping at home and if you pass out just call an ambulance’… because that makes sense.
And the NHS wonder why people are scared to go to hospitals and wait it out at home..
Words by Catherine Ann Luckett