I’m sorry to have to blog such a negative piece today but I need to be talking about the negatives as well as the positives. As I have said many times so far, my care experience has been amazing. The nursing and care support have been just fantastic and I am a huge supporter of the NHS and nurses. My best friend is a kick ass nurse and I think they do a very difficult job in tough circumstances.
So it pains me to write about my experience over the last day, it really does.
Yesterday I had a bad time with my bag, I had a lot of leaking and my stoma was leaking into my wound. This was making me sore, embarrassed, stressed out and upset. The nurses helped me to clean up a few times, they dealt with the accidents with kindness and helped me to maintain some dignity whilst I lay being cleaned up. It was very tough and left me feeling humiliated and weepy. But we got through it.
This morning I woke to find my bag had leaked again and as I looked at my wound I saw the whole thing was swimming in the output from my stoma (poo to me and you!) I pressed my buzzer and a nurse came over, she said she was doing her tablets round and would be over later. I left it a while and then asked again, she quite huffily said she would do it later. I explained that my skin was sore and I was freaking out about infection from the poo being inside my staples!! So could I do it myself. After an hour she came back and said ‘are you expecting me to do this?’ I said yes and she said ‘fine’ I said I could try to do it myself but wasn’t sure where to start. She then cleaned my wound and bag in silence. No comment and no eye contact. I was mortified. I felt like she was a bit disgusted and didn’t want to help me. I felt like sinking into the bed and disappearing.
From then on today I have asked a few times for support. I’ve said that my bag was leaking, I’ve said that I was nervous and didn’t know what up do. I had very briefly seen a stoma nurse the morning before who had fitted one bag but then I’d leaked so many times snc tried so many different things that I was confused.
I asked if I should try to empty the bag in the loo and the nurse said ‘yes, obviously’ – the whole day felt difficult. I was trying to ask for support but not getting it. I had no idea if I was doing it the right way or not and the nurse seemed not to care.
Other nurses I’d seen so far had been open and kind and just asked ‘how can I support you?’ ‘Would you like help with this’ etc. this nurse just looked mad. She looked and sounded like she didn’t care and that scared me into not wanting to ask any more of her.
She was quite rude and abrubt to visitors and just came across in a very uncaring manner.
This afternoon I asked for some water. I’m trying to increase my water input to help with a number of things mainly blood pressure and stoma care. I asked 3 staff for an hour and a half for water.
I asked if I could get it myself and was told no, I’m not allowed in the kitchen. I know they were busy but I was parched and being postop I really needed to keep my fluid levels up.
My stoma nurse came at 530 and was shocked to hear that I had been struggling. She had not been told that I’d leaked 6 times the day before and was distressed. She said that my output needed more fluid and I needed to drink more. I pointed out that I’d been asking for water for an hour and a half. The student nurse then took my blood pressure which was again low an said I needed to drink more.
No shit Sherlock!!!
Anyway I was looking forward to todays nurse ending her shift and hoping that the evening staff would be of more support.
So this evening towards to end of visiting I found my bag was leaking. I had to ask friends to leave and I was quite upset. I found the evening nurse and said ‘my bag is leaking, maybe I could have a shower? Could you please help me and get a towel. She got a towel an just pointed to a cubicle. I waited for her to come but she didn’t.
If I’m honest I thought she would come and help me. I just had my epidural out today and so I’m still unsteady on my feet and in a lot of pain. When she didn’t even come in, I was too embarrassed to ask her. Of course I’d rather not have a person helping me wash my fanny in the shower! But realistically I needed the help.
I felt very exposed and childlike. I couldn’t lock the door and there were blokes sat outside. The nurse was talking to another staff and kind of shrugged as I pulled at the door.
I dragged the disabled chair into the shower and managed to half sit, half stand in the shower. I struggled to remove my surgical stockings and knocked my stomach.
I sat crying in the shower, not know whether I was supposed to remove the bag or not. Not knowing if I should use soap near my stoma or not. I was in a lot of pain and wished I’d not bothered trying to get clean.
I managed to get somewhat clean and then realised if need to do my first ever bag change. Wet. Alone. In pain. And sat in a disabled shower with a door that didn’t lock. Score!!! Well done me!!!
As I shuffled back to bed a lady from the ward said ‘you need more support love, I can’t believe she didn’t help you in the shower. Can I help?’
I got into bed and then looked down an realised my bag was once again leaking A lot.
I pressed my buzzer and a support worker came, I told her my bag was leaking and i was stressed – I didn’t know what to do. She brought a bowl of water, plonked if down and said ‘is that what they do?’ I said I’d not been getting any support but that I did need help. She just shut the curtains and walked off.
I thought I’d better just give it another go. It’s tough, there’s a lot to learn and I was promised to get stoma education and that the nurses would help me every step of the way over the weekend. This just wasn’t happening
The support worker came back and said ‘you done? Ill open the curtains.’ I replied somewhat snarkily that no I wasn’t done as I had no bloody idea what I was doing but that if they wouldn’t help me that they could at least leave the curtains for privacy. ‘Suit yourself’ she shouted back.
That’s the point I texted Hannah, my awesome nurse friend. I’m a strong independent head strong woman but right now I’m a wilted, broken woman in pain. I’m someone who wants to be able to do things for herself but currently needs help. I needed to speak to Hannah as I sat crying looking at this bloody bag wondering whether my wound was I infected.
Hannah quite rightly told me I needed to speak to someone and to demand some care.
I made a last dash for the loo and when I came out a lady from the ward said ‘Sam I’m worried for you love, why aren’t they helping you? I have buzzed them, this is ridiculous!!!’
I saw the nurse who’d not helped me to the shower and it all built up and fell out!!!
‘I had the whole of my large bowel removed three days ago, I’m in agony, I’m frightened and I am not getting any support from the nurses today. This isn’t fair. I’m in a state and I need some support!’
She replied and said ‘well ask then, it’s not just me’
I looked up quite surprised And said ‘I’m struggling and I haven’t got good enough care from you or the other nurses today.’ I started crying and she said ‘well if you want something just ask!’
She was really defensive and aggressive and I couldn’t believe it! I started crying and said ‘I really hope you are never in a situation where you are in pain, frightened and need help and you’re surrounded by people who don’t care’
She shouted ‘why are you wishing pain on me?!’ I replied that I wasn’t, that I was hoping she would never struggle the way I had. She repeated that I was wishing evil on her…. *sighhhh*
Another patient said ‘The lady’s upset and saying that she hopes you won’t ever be in her situation as we’ve all seen her struggle today and no one helped her!
She was told to be quiet and not to did us other patients.
Then she walked off leaving my curtains drawn and myself crying a lot inside my bed.
I called Timm as I was getting into a right state, I couldn’t believe how things were going and just felt frightened and alone. I was crying hard to Timm and it was obvious you could hear me around the ward. I looked up and the nurse was stood outside my curtain just doing her meds round. I said ‘timm the nurse is standing here doing nothing, I’m in pain, I’m frightened and she’s just stood here.
She did not try to improve the situation, she didn’t try to make me feel better or to pass it on to a superior. She just carried on.
Eventually She said ‘what do you want me to do? You’re just complaining and I’m saying ill do whatever you want.’
I said I wanted to speak to whoever was in charge. The nurse laughed in my face.
I was desperately sad, crying and in a state and she laughed.
Finally the ward manager came over. She asked what was going on. To be honest I’m not sure what took her so long. I tried to explain how unhappy I was at the lack of care and support given all day. I mentioned the shower and the Nurse stepped back I shouting ‘you only asked me for a towel, how’d I meant to know you wanted help?!’ I’d think it was common sense as a nurse to at least offer wouldn’t you?
I said she’d not offered any help and she laughed. Again. I almost lost my head. I can’t believe that when being confronted by a desperately unhappy patient who is three days out of major surgery that anyone would LAUGH I’m their face.
Unforgivable in my opinion.
So I spoke to the ward manager and hopefully pulled in my crazy. I know I wasn’t at my most rational but I’m in pain, I’m distressed and I feel let down so in the circumstances I think I did ok!!!
She has apologised and said that communication needs to be clearer. I think she is suggesting that I need to clearly say the words ‘I need you to get me a care kit and clean up my waste as well as bathing my wound’ – I tend to think that other nurses don’t need it spelling out so clear and asking for help as my bag is leaking should suffice. But perhaps these are particular nurses who suffer from a lack of empathy and common sense….
All I can do is move forward from here, ill be complaining about certain members of staff and making sure the hospital know what has happened.
It’s not just me, other patients have commented that we have had the most awful day of staff being rude, unhelpful and not caring.
I have had another leak tonight and pressed the buzzer. The nurse came over and I told her my bag was leaking into my wound. I asked if there was anyone else who could help me. She said no. So I have had to let her clean me.
I just want you to imagine how it feels for a grown woman to ask another person to help clean faeces off them. Now think how it feels knowing that you’d asked before and that person had already not wanted to help. Now imagine that being the only person who is available to help you.
Nah, me neither.
Well let’s get this blog post out into the ether, eh?! It’s not to slag off nurses or to be nasty. It’s about real experiences of patients of the NHS.
Im laid here raw, exposed and totally frail to these things happening to me and experiences like today have made the whole thing so so much harder.
I really hope tomorrow will be a more positive day.
Thank you for reading