Advice regarding post-op care and information
Hi, just joined because I'm looking for some advice. I have been having some operations on my urethra through the NHS the past few years and when I thought it was all over, I then get a stricture, more than likely due to scar tissue.
During my in and out of hospitals the past few years the nhs have kindly sent me to private ones down London due to the specific team required to carry out the work. It's all been as wonderful as surgery can be.
Due to my stricture rapidly causing concern, I was whisked back down to London for what I was told, a cystoscopy. Right up to the point of sitting idly in one of those flattering gowns and paper pants I was totally left in the dark about what was going to happen. The surgeon came to see me and told me a lot of maybe's. Maybe they'll have to cut me open. Maybe I'll wake up with a subrapubic catheter. Maybe they'll have to take a skin graft from my inner cheek. Maybe it'll be something super simple and they won't even need to do anything!
And so with a head full of maybe's I was walked to theatre and told to keep my mouth open as I slipped into the anaesthetic sleep.
I woke up. The pain in my mouth indicated that they had to take skin from my cheek to repair my urethra. As I came around steadily, the surgeon did not. I asked the nurses on several occasions how the procedure went and what are the results. They didn't know. Told me the surgeon or someone from the team will be by the next day to let me know. The next day came and I was told that no one was able to get in touch with the surgeon, and they themselves were still just as clueless as I was. So with a catheter installed (which I assumed was a subrapubic, but then it appeared to be indwelling, which I then later discovered was installed part way down my penis shaft - yeah, no one told me, figured that out on my own!) and only a leg bag provided I was sent home.
I had so many questions! When do bandages need changing? Removing? When does the catheter need removing? Was it successful? Anyways, tried to call the clinic who arranged the surgery for me to get some answers. All I got was 'we'll have to call you back' and they never did. I have called so many times and I STILL don't have any answers (was discharged a week ago). Luckily, arranging a district nurse wasn't the headache I've had in the past. They were given information to remove catheter today. I asked about dressings, so they changed them anyway. Today was the first time I was able to see what was underneath the dressings, and believe you me, both I and the district nurse went into panic mode! It looked to me like the wound had not healed. Half my penis was left wide open. The district nurse decided not to remove the catheter (because seriously peeing without it looked like it wouldn't go down very well. She redressed it best she could and advised me to get in touch with the clinic. Kinda difficult on a Sunday.
So I panic called the hospital where the surgery took place. I'm at this point freaking out that my whole penis will have to be removed and in no way shape or form does it look to me like it could ever recover from such a horrendous wound. Finally, the hospital was able to get in touch with the surgeon and the answer I was given; "that's normal, the surgeon said he's to stitch it back up and the catheter is ok to be removed'. I don't feel comfortable with it being removed yet so they said it was OK to leave in for an extra few days and to discuss it more with the clinic when they reopen on Tuesday.
I wasn't given any more information than that. I checked google only to now find out that the only way this makes sense is that the surgeon has decided to perform a two-part Buccal mucosal urethroplasty.
Guys, I'm am so sorry this post is so long, but honestly, to not explain anything to me, to let me leave hospital having go figure out what kind of catheter I have by myself, to have me panic in absolute terror not knowing what was going on with that wound... is that not a form of malpractice?? I feel seriously traumatized by the state I saw my penis in today. Regardless of its meant to be that way... you would honestly think someone would have been able to tell me what to expect? When I call the clinic on Tuesday I will be making a formal complaint about the lack of communication I've had. But I'm not the best at complaining. Does anyone have any tips?
It's not 'so long' and - I utterly agree with you, the lack of communication and information is TOTALLY unacceptable! AT the very LEAST you should have been given typed information and advice upon discharge.
YES, it comes under mal-practise, no doubt about it, as means you could make a claim for the unnecessary and wholly avoidable distress (assuming the surgery itself was even up to standard, that is) - specifically, 'compensation for pain and suffering' due to negligence. Can you make an emergency appointment to see your GP to have him check the wound site over as well as make him/her fully aware of the whole shocking situation to-date? In fact, he or she should be the one to write to the chief registrar of the referring hospital or health authority on your behalf, no doubt copied to the counterpart of the clinic itself.
Failing that, there's the General Medical Council or Citizen's Advice who can advise and guide you on whether you have a case and what to do from here. And/or seeking the advice of a solicitor that specialises in clinical negligence. But I personally would see my GP as logically the first step.