No pain management and unclear follow-up after surgery--how to address

mathilde

Hi everyone. I had surgery two days ago which was meant to remove a kidney stone through the ureter (no incision). I had general anesthesia. (It's a big 11mm stone so needs treatment.)

When I woke up I discovered that the surgery had failed because they couldn't get through to the stone (my tubes are too small).They put in a ureter stent and they'll try again in 4 weeks to go get the stone and laser it away.

So okay, that it all makes sense, but here is what went wrong.

1. I was waking up and very disorientated and I overheard a nurse telling someone else that my operation failed. I piped up, "Do you mean me?" and then finally someone told me what happened and why I was in so much pain.
2. Another nurse or HCA brought me my clothes and told me to get dressed, which I did because I was basically an obedient zombie and still waking up.
3. I never met my surgeon. I couldn't pick him out of a line-up. However his assistant did come to my bed after I was dressed to explain in more detail why the operation failed. I in too much pain to lie down, could only stand hunched over swaying because of pain. He was like, "Oh you're in pain?"
4. I went into toilet and screamed when passed urine. One of the nurses said, "You all right?" and I said I was in agony.
5. They started discharging me and I said, "What about pain management?" They gave me one dose of codeine right there, nothing to take home. They said I should pick up some paracetamol. 
6. I explained that I now had kidney stone pain plus stent pain and paracetamol would not help. I asked several times for something to take home, like Voltarol, but they refused and said I could "try my GP".
7. A few hours after I got home I was screaming and looking for sleeping pills in my old handbags so my friend took me to A&E. Waited four hours to see urologist and literally begged him for Voltarol, which is the only thing that helps. Finally got pain medication. 

So I'm loads better today but there is no way i can go through that again. Individually everyone I interacted with seemed normal and professional except for the fact that they seemed baffled that I was in pain. For a condition that is widely recognised to be painful. I wasn't asking for anything outrageous and I pay for prescriptions--just literally a box of Voltarol maybe?

So for the follow-up operation what are my options?

1. I could ask my GP to refer me to another hospital but that might delay things.
2. I could ask to speak with the clinical lead and ask him/her, basically say that was not okay and ask for better post-op care.
3. I could go through PALs?

I'd be grateful for suggestions. 

Emmia

Medical advice isn't permitted on the forum.

Renfrewman

Ask your GP for Voltarol if that is what you require?

mathilde

But you need a prescription! 

mathilde

But I take your point, I finally got a prescription from the A&E doc so maybe I'll try to hoard some of those for the next op.

mathilde

Emmia said:

Medical advice isn't permitted on the forum.

I'm more asking what to do to make sure I don't get the bum rush next time. I think it's scientifically uncontroversial that surgery needs post-op care.

Emmia

mathilde said:

But you need a prescription! 

Is your objection to needing to get a prescription,  or to paying for a prescription?

mathilde

I would have paid £1000 for a box of Voltarol. 

Yes, in principle "get a prescription from the GP" makes sense but you can't "get a prescription from the GP" at 20:00 when you're Ubering home!

And it's not possible to get a prescription from the GP before an op just in case it goes wrong.

Surely if an operation goes wrong and makes the pain worse not better the surgery team can give a prescription for the hospital pharmacy? Or something?

Renfrewman

mathilde said:

I would have paid £1000 for a box of Voltarol. 

Yes, in principle "get a prescription from the GP" makes sense but you can't "get a prescription from the GP" at 20:00 when you're Ubering home!

Your surgery was two days ago. Why did you not contact your GP yesterday?

mathilde

I've got a proper prescription from my GP now. That's why I'm doing better. 

I didn't have a stash of Voltarol in advance of the operation because I (and no one) knew that the operation would go wrong. When I was discharged they refused to give me a script for the hospital duty pharmacy. They actually said I could come back to A&E if I really needed to. I could've done without the disorientated screaming at home and midnight trip back to hospital. 

unforeseen

TBH after having 2 TURBTs and 6 other rigid cystoscopies, pain when urinating for a day or two after is virtually guaranteed. The cystoscope  tends to leave the ureter pretty raw.