Why do hospitals let themsielvesdown?

4 minute read time.
Well, on Monday my son had his operation to remove an 11cm tumour from his left side. Up until then, him, and myself had had the most efficient, fantastic treatment from Endocrine team, and then pre-admission, the surgical team. We sat waiting in the ITU waiting room, and after 3 and half hours we suddenly saw him being wheeled past in a bed. I don't think that image will ever leave my mind. Anyway, once in ITU, the surgeon's assistant (who had wheeled him up there) disappeared, so eventually, when we were allowed in to see him, I asked the nurse how the op had gone, 'did he lose his kidney, or his spleen, was it attached to the bowel?' She glanced at the notes and said he'd had a node removed from around his heart. I nearly fainted. 'Why?' I croaked, 'She shrugged and said 'There must've been a growth in it'. When I finally got to speak to the ITU doctor, he said that wasn't the case at all, he'd had some nodes removed from around the tumour, which the aortic nerve ran near to. Stupid nurse. Then the doctor said he couldn't read the surgical team's writing, so didn't know what he'd had done. How can a patient be wheeled into ITU and they don't know what procedure he'd had? After a few hours, (and because we'd said we wanted information from SOMEONE, the surgeon rang us and said tumour wasn't attached to kidney or spleen, so he hadn't lost either, but it shared a couple of blood vessels with bowel, so a bit of reconstructive work there, and he'd removed a couple of nearby nodes as a preventative measure. This conversation took all of 30 seconds. So why couldn't they have popped their head round waiting room door and told us that in the first place? Then, about midnight monday, I got call from ITU to say they were moving him to a surgical ward as they needed his bed in ITU. I said not happy about this as he'd only been in there for 6 hours or so, but they moved him anyway. Then yesterday was really awful. He has the PCA morphine drip, but was in terrible pain all day saying it wasn't helping - we asked if he could have more and one of the underling doctors said no, no more because of the risk of nausea, when he hadn't felt nauseous at all. It was so awful seeing him in so much pain, I had to walk out of the ward at one point to try and get myself together. So last night I rang the ward at 10pm and spoke to the nurse looking after him, she said he was more comfortable and sleeping, because she'd increased his morphine pump to 2mg per 5 minutes, as it'd only been set at 1mg, which was very low. I told her the doctor had said 'no' to increasing it and she said it was written in his notes 1 - 3 grams of morphine depending on his pain. So she had taken the initiative to increase it, as he'd had no sickness so far. We were so angry that our boy had had 20 or so hours in pain when he didn't need to be, so my hubby went to hospital this morning before work, to catch the doctors on their rounds and tell them we felt disappointed with their pain management abilities. The surgeon's registrar breezed in apparently, and said' Oh yes, we'll start to take him off morphine now!' So my husband said 'now hang on a minute, they've only just got his pain under control, and it's only 36 hours after major abdominal surgery, so forget about 'stopping' morphine unless you can give him something else. My son is doing ok, all obs are fine, but I feel it's so frustrating - different teams don't seem to communicate properly with each other, and I feel so bad that he was in so much pain when he didn't need to be. I feel as if we didn't fight his corner enough. I know that you simplay have to be 'on the case' all the time, as nurses are so busy, and doctors, that communicaation gets lost, silly mistakes are made. And I know I must have a reputation amongst the nurses and doctors as being a pain in the arse, but so what, I don't give a toss - I want to know what he's having, when, why, and how much, and I won't put up with doctors breezing in like the second coming and talking off-handley to my son when he's in so much pain he can't even take in what they're saying. At this rate I'll be barred from the hospital! BUT the good news, at least he kept all his organs, now we have awful wait to find out benign/maligant. Professor seems to think it's maliganant because it was so big. So dreading that result. Going up hos later today, hope he's a bit better today.
Anonymous
  • FormerMember
    FormerMember

    Hi Jeanie, so sorry to hear of what happened.  What a terrible thing for your son to be in so much pain.  As for the choice between pain and nausea I know what I'd rather have.

    You keep fighting your son's corner, who cares if they think you're a pain in the arse, you're entitled to be and I'm sure the doctors and nurses would do the same in your position.

    Glad to see your son is now getting the pain relief he needs.  I hope you get the results you want.  I will be keeping my fingers crossed for you all.  Hope you're son's doing better today.  Will keep an eye out for your posts.  Best wishes, Christine xx

  • Jeanie, I really feel for you! Your poor lad! Yes, I'm afraid hospitals mostly have got so big and impersonal that you really do need to persevere to get information, and I can so understand you wanting to be on the case constantly!

    I used to work as an OT and frequently intervened when in the main hospital to alleviate the mental struggles that my patients so often had about their care! In the small Day Hospital where i worked last, we gained a reputation for helping our patients in all aspects of their care, we were one of the very first units to gain 'King's Fund Accreditation' in our area. But even that is no more, 'they' closed it down!

    Go with your instincts, support your son, there is nobody in the hospital system who will act as advocate unless you do it..... nobody there will mistake your interests which are of course, totally maternal and totally normal!

  • Hi

    I had major abdominal surgery in April and found the nurses on the ward were the people really managing my care, on the day after surgery the house officer did the ward round with a registar and spent 30 seconds with me and made it clear he new nothing about me.

    I complained to the sister who did the round with him and she made excuses, but as I said nurses were great.

    hang in and fight your corner.

    Hope all goes well and your son gets good news.

    john

  • FormerMember
    FormerMember

    Glad to hear he has come through the surgery, what a time he is having though. Complain  Complain Complain I did and did not really care if they were happy with me or not. I am sure they dreaded me going in every day as I had something else to complain about. If you don't get anywhere put in in writing to the hospital complaints dept.

    Love Teri

    PS hope you are well

  • FormerMember
    FormerMember

    My doctors love and hate me all at the same time, normally because i am so well informed i know what they need and should be doing before they figuer it out, the most important thing through all this is to voice your concerns, every little bit of pain, discomfort should be told to the doctors as whos to say that pain is normal or not. Just because its so large dosnt mean its cancer... i have a tumor thats the size of my lunch box in my chest, a intermediate tumor called agressive fibromatosis, also similar to desmoid tumors, theres can grow any where so till you have the diagnosis try no panic :-) i know its hard i speek for what your son has can only speak for my experiance but if u ever need to have a blow out feel free to msg me i understand more than id like to lol