Hi,
I had an upsetting experience due to a mistake by my CNS and thought I’d flag to people here on the off chance that the same thing happens to them - maybe prevent some unneeded distress and anxiety. For context I’m T3 N0 M0 (stage 2) high rectal undergoing neo adjuvant FOLFOXIRI before surgery to give the best long term out comes due to age (38). It’s a fairly rare but lucky position to be in from what I understand.
Outline of what happens is as follows:
- sat at home on a Tuesday on the middle of chemo cycle 3/6. CNS calls unscheduled. She says there is something she doesn’t understand but needs to tell me.
- she can see from my paperwork that I’ve been moved from a curative treatment plan to a palliative pathway. This must mean my cancer has spread but she can’t see any detail about that - can I explain. Also my request for my pain management to be moved to community care has been approved.
- I say I don’t know what she’s taking about and all my letters from consultant and my chemo consent form say “curative” and “neo adjuvant” not palliative. She says her paperwork says palliative so something must’ve changed. I say I haven’t had any extra scans or tests on the intervening period so there’s no way that could be true. She says “good point”. I also flag I haven’t asked for pain management in the community. We go round in circles for a bit.
- I say I’m getting pretty angry and upset and tell her to hang up and “get your s**t together then call me back”. SH says that’s a good idea and a doctor will call me back.
- 35mins later she calls me back very apologetically. Says she made a mistake and half explains it’s all an admin error.
- two weeks later I speak to the consultant who explains. One of my drugs (the IRI bit) should only be funded for more advanced cancer than mine but it’s the best treatment for me so he found a way to get it funded by fudging my diagnosis with the pharmacy teams (he didn’t say exactly this by after 17yrs in the public sector myself I knew 100% what he was saying). Part of his fudge meant ticking the “palliative” box with the pharmacy. I’d called to ask for some mouthwash to manage the pain of a small ulcer (this was the community pain management but) CNS had looked at my pharmacy form to check what else I was on. Seen palliative written there and couldn’t work out why all the other paperwork was different.
- after the screwup they were all great. CNS very apologetic and reported herself and the error internally. I wrote to the consultant and it’s now in the formal complaint system.
- last chemo infusion (Friday) I asked to see my prescription and there it is clear as day one the corner “diagnosis: rectal adenocarcinoma. Palliative”. It was so stark to see I had to call my CNS to double check there was no change. But it is very easy to see how she made the mistake.
My main worry and what I put in the letter was that I feel pretty confident and comfortable dealing with the bureaucracy but many of the patients I see are older and don’t have English as a first language. I can only imagine how much distress the error and call could’ve caused to somebody in a different situation than mine.
so there you are. Hope you’re all doing ok.
