I woke up some time around 6.00am, Thursday morning, on a different ward – The Emergency Admissions Unit (H3). My boyfriend and his mum must have gone home, but there was a young doctor sitting on the edge of my bed ready to ask the usual admission questions about what had led up to me being there. I was slipping in and out of sleep and I’m not sure how much sense I made, but I’m sure I had a good go at getting things across. The nurses from A&E had already filled everyone in on my level of pain and immobility; I relaxed believing I’d now get the right care.
I was woken again a little later on, by a nurse that I’ll call ‘nurse M’, telling me she needed to change the bed and I would have to get up and sit in the chair. I was in a lot of pain again by this time and tried to explain this to her, simply expecting assistance or an alternative approach. Instead, nurse M gave me a very scathing look – “so you can’t get up at all?” she asked, “how did you get to the hospital, in an ambulance?” I tried to explain exactly how difficult it had been to get to the hospital and how we did it out of sheer desperation, but she interrupted – “So you’re saying to me that last night you managed to walk but this morning you can’t?” Nurse M raised her eyebrows and went on arguing with me, without letting me explain, until she finally said “fine, if you want to lie in your own filth all day in a dirty bed that’s entirely up to you!” She turned and walked away, holding her hand in the air to silence my answer.
I was shocked and upset by her attitude, especially since I had done nothing to provoke it – it’s not exactly my nature to be awkward or cause offense, quite the opposite really. The young doctor had witnessed it all and approached nurse M, explaining that I had a severe longterm medical condition, was in a lot of pain and being kept immobile on the advice of the doctors and that she should learn to be more sensitive. Nurse M even had the nerve to shrug and walk away from her, mumbling ‘whatever’; she was obviously used to intimidating people and felt herself above the younger doctor. I realised at this point that nurse M was going to be a problem, I just didn’t realise how much.
The next few hours were torture, literally. My pain returned to the level of the previous evening and I became quite distressed; yet my calls for help were ignored by both nurse M and the other staff. I was aware of her discussing me with them and felt that she was influencing their opinion of me, but have no idea why she took such an obvious dislike to me. I also overheard a lot of other things. For instance, once she discovered that I was due to have my Tocilizumab infusion that morning, she complained that she did not want me on her ward as it was an expensive drug; even when another nurse explained that it was paid for, prescribed and waiting for me on my regular ward she was adamant I leave.
Feeling desperate for the toilet, I asked for assistance and was offered a comode despite the fact the doctors had told them to keep me in bed. They were still due to investigate the hip, as well as some back pain, and until we had answers I was supposed to be kept immobile. I was too overwhelmed with everything to argue though and with assistance (and a helluva lot of screaming) I managed to go. Unfortunately, when I buzzed to be helped back to bed, it was nurse M that came and she wasn’t happy. She told me she couldn’t offer me any physical support as she ‘had her own problems’ having been off work for four months with a bad back; I requested that she find someone else to assist me, as I wouldn’t manage without, but she just said “come on, let’s just get it over with”.
She offered me her hand and I put some of my weight through it but was hardly off the comode when she let me fall and shouted out, grabbing her back. The curtain was whipped back with me lying prone – half on the bed and with my pants halfway down – as she made a song and dance, letting everyone know how ‘that girl’ had put her back out. The staff crowded round her, telling her to go and rest and offering her pain relief, but I was left to struggle and sort myself out; totally humiliated and in excruciating pain, not knowing if I’d done any further damage. Nobody cared. And nurse M made a point of complaining in front of me for the rest of my time there too.
There is more that I could say about nurse M’s mistreatment and bad attitude, but I think this is enough to give you an idea of how serious things were. I have already spoken with PALS – the Patient Advice and Liason Service – was visited by them during the rest of my stay and am in the process of putting together a formal complaint against her. Not only because I want an apology for myself, but I worry that if she treated me in this way, (when I can at least speak up for myself a little), how is she treating people who are more vulnerable and can’t communicate such treatment to others? She is working on a ward with a high intake of patients and I wonder how many of them are experiencing something similar to what I did, it’s frightening and totally inexcusable. No wonder both my grandmothers were terrified of being admitted to hospital and preferred to suffer in the comfort of their own home. The care you can receive in hospital is totally unpredictable, ranging from superb to abuse; I have been aware of this for a while, but this time I’m determined to do something about it. /rant over
The hours passed slowly. Throughout most of this, I was in some of the worst pain I have ever experienced and as a result was constantly crying, whimpering and groaning (I don’t mean to sound dramatic but that’s how it was – pain does funny things to you). I was told that I wasn’t due any pain relief, although we found this not to be the case later on. Nobody paid any attention to me; I was totally alone, humiliated, confused, scared… especially as there seemed to be no sign of anything changing and the pain just got worse and worse. I became totally desperate and tried to text my boyfriend’s mum, asking her to ring my infusion ward to see if I could be transferred there as soon as possible. They knew me there, they knew I wouldn’t play on or exaggerate my pain/immobility, would be more understanding… anything to get me away from all this.
Then my phone rang and it was my mum; she had phoned the ward to see how I was and had been told I was fine but had had ‘a few tears’. Realising this didn’t sound like me at all she’d decided to speak to me herself… she was shocked by what she heard. I was so distraught with the whole situation by this point that all I could do was sob down the phone. Like all good mums, she promised she would sort it out for me and I knew that she would. It turns out that she rang my Rheumy’s secretary (who we have a good rapport with), and explained what was going on, in tears herself by this point. My rheumy was at a conference that day, but the secretary sent his registrar Evin down almost immediately.
I have never been so happy to see a Rheumatologist! Things turned completely on their head from that point but I’m still a bit traumatised by what I went through. I was given pain relief immediately, after a seven hour gap, but the pain was that advanced that it took further doses to get to a bearable level. The registrar examined me, spoke to my rheumy over the phone and came up with a plan of action straight away. My friend and my mum came to see me and although the pain was better by then, I think it still came as a shock to them. Strangely, I didn’t see nurse M again – I’m guessing she decided to keep her distance.
The rest of the day is a massive blur, as I was drifting in and out of sleep. I had multiple Xrays at one point, of my hips, neck and spine and heard them mumbling things about lines and shadows and necrosis… But the important thing was that my pain was starting to be more controlled; my mum and friend were there and my boyfriend would join me later… I felt safe.
I went straight from Xray to Ward J6, the ward next door to my infusion ward and a ward I have spent time on before. Again, I don’t really remember much as I was so out of it, but I finally felt I was going to get the care I needed.