"New Cross new ED/A&E department"

I was brought in to ED at 8. 20am on a  Friday morning by a paramedic in a rapid response vehicle. My temperature had started to rise at 1. 45am and I became tachycardic, ached all over and no energy. I'd only been discharged from C41 on Wednesday night. I took paracetamol to try to lower my temperature and ivabradine to try to lower my heart rate. Instead my temperature kept rising. This was listed as uncommon and rare side effects following an infusion of ferinject (iron) whilst I was an IP on AMU on Tuesday night.

111 GP advised me to get to ED for urgent blood tests and blood cultures. I was sat in the rapid assessment area where nobody came to assess me. There was no trolley in the cubicle. I was moved to majors cubicle 11 approx 30 minutes later. I sat in a chair as no trolley in cubicle. About 10 minutes later 2 porters wheeled a trolley in. It had white bits over the mattress and did not look clean. I used the universal disinfectant wipes and cleaned the mattress and bed rails myself as I didn't want to catch anymore infections. After about 20 minutes I peered into the corridor to ask for a bed sheet so I could lie down. A staff nurse came and put one on the trolley. I'm glad I'd cleaned it prior to use. Fortunately I'd got my own pillow and blanket as there never any in ED. I have ehlers-danlos syndrome and lying down without neck support causes further problems.

I was finally seen by a nurse at 9. 50am. Had my obs done and found to have a high temperature and heart rate. A doctor saw me and said I'd have a cannula in, bloods taken for FBC, U&E, LFT, CRP &ESR then they'd get a phlebotomist to take blood cultures to see if I had an infection. An ECG and chest x-ray was also done. They couldn't get in touch with the phlebotomist so decided it was more important to start me on IV tazosin in case I had sepsis as I may be dead before blood cultures were done. I was rather scared at that point. I had no signal to phone or text anyone.

The blood cultures were done after the tazosin finished so I'll likely get false negative results. I understand that they should always be taken before any antibiotics or penicillin given. I then had IV paracetamol and IV sodium chloride as that's what they do for patients with sepsis. Quite shocked to hear that from the staff nurse. No reassurance. The nice female ED junior doctor got the oncall medical consultant to see me. He said I either had rare side effects of the iron infusion I had Tuesday night or a viral infection but they could exclude sepsis. Relieved to hear that but I felt so ill. Very hot and sweaty, ached all over, no energy, headache, dizzy when I tried to walk, and drowsy. The AMU doctor examined me and decided I could go home with oral co-amoxiclav 500mg/125 mg, take paracetamol to reduce my temperature, drink plenty of fluids and have bed rest. I explained because of my EDS and postural tachycardia syndrome and how unwell I was, that I wouldn't manage at home. I would be too weak to get food and drink and I'm supposed to drink 3 to 4 litres of water a day for the PoTS condition.

I asked him to contact the community intervention service on my care plan/emergency care pathway and put in place carers so I'd be safe. The nurses thought I should phone myself but no.....it is for staff to sort out, not the patient. They told me they'd get physio to see me to see if I was safe on my feet. I don't know why the doctor couldn't take my word that I was ill and weak? I was told I'd go to CDU until I was ready to go home. 2 occupational therapists saw me in ED.....not physios. I could only walk with my crutches to end of cubicle before becoming too dizzy and losing balance. Then needed to lie down. Anyone with common sense and compassion should have seen I wouldn't cope.

I asked a staff nurse to fill my water bottle but was told wait until you get to CDU as the water isn't nice down here. I never was taken to CDU. 2 hours later I had to ask a different nurse for water. Disgusting when I'm supposed to be on a high fluid balance. I'd also told the nurses in the morning that I had an appointment at 3pm with my GI consultant in OPD. I asked for a porter to wheel me down there but they wouldn't allow it. I'm sure if I'd seen him it would have been a very different ending. So now I'm left struggling with GI problems.

I was told a community discharge matron would see me in 30 minutes time but it was over 2 hours when she arrived. I explained to her how weak and unwell I was and how I wouldn't manage at home alone. She said the best she could do was get me a safety call on Saturday but couldn't guarantee a time. I asked how I was supposed to manage Friday night and Saturday until someone arrived. She didn't appear to care. No ED staff I had contact with seemed to cared either. I had really bad abdominal pain develop after I had seen the doctor. (I know now it can be due to IV tazosin but at the time nobody told me). The nurses did not get me re reviewed by a doctor. Why did they fail to help? I was told by many staff I was fit to go home. They did not comprehend the effect it would have on my Pots if I didn't get fluid. They should have as I'd been given IV fluids on the Monday night and admitted to AMU due to dehydration. I kept trying to make them understand that I'd be vulnerable if I went home. They didn't appear to care.

The staff nurse off the afternoon shift told me I either went home by a wheelchair and ambulance as waiting for a stretcher would take too long or she'd get security to remove me. It's beyond belief that a nurse can say that to a sick, disabled patient. I'm disgusted and want everyone to know. I want a personal apology from that nurse as a minimum. The ambulance did have a stretcher so I could lie down. I got home at 7pm. 10 hours in ED but I think they'd discharged me on the computer earlier to make it look like I wasn't there 10 hours. What happened to the 4 hour breach time?

 The NSL ambulance crew got me safely into my bedroom then left. I was too ill and weak to get food and drink so all I'd got was the bottle of water filled up from ED. I'd been given no food all day in ED. A basic human need overlooked. Why aren't staff aware that if sick patients spending 10 hours in the department don't eat.... they’ll get weaker?

I felt really dizzy and faint at 8pm and I remember thinking I need to lie down quickly. Then I woke up at 4am with the bedside lamp still on. So I was on my own and fainted. I did need a carer and the hospital were negligent. They knew I'd be on my own. I think they should have kept me in where I'd be safe, until appropriate care could be put in place. I never had received a safety call on the Saturday by 3. 30pm so I'd had nothing to eat. That was on top of ED keeping me starved. I phoned the community intervention service in my care plan. There were no rapid response carers available and aren't until at least Tuesday. The community sister came to do a nursing check. I was weak, dizzy, had low blood sugar and dehydrated. This should never have happened. She gave me food and drink and left more food by my bed for the evening and said she'd come back to do my breakfast. She left me a sandwich too. A community sister should not have to assume the role of carer. I know have side effects of the penicillin to endure too which are making me dizzy. I can't believe this level of negligence has happened when the Friday the week before......the ED consultant dismissed my eye problems, headache and missed the fact that I was flushed and sweating and dehydrating and in need of IV fluids.

I had to go to Russells Hall ED for IV fluids and they wanted to admit me where as new cross ED did nothing. It's all beyond belief Something seriously needs doing to keep patients safe. I have lots of ideas if someone would take the time to listen. I would not recommend this hospital to my friends or family.