Hi...so this is intended to start a thread under this heading...idea being not to scare each other witless with horror stories, but to highlight stuff that happens , to help each other anticipate.
Here is my starter story. At first chemo cycle, H was already vv ill. On chemo day one we were handed a bagful of drugs to take as part of the cycle. By day 2, he was an inpatient. By the time he was discharged, a week later, most of the drugs had been changed. On second chemo cycle we brought the bag contents back as instructed and it was handed back with some extras. Some of the drugs issued on discharge started to run out...I phoned several times and each time was told, nothing to worry about. For example, steroids were only needed for 3 days. But eventually everything ran out. Seemed a bit odd. H’s breathing got worse. Made a lot of calls. WE EVENTUALLY FOUND OUT THAT 5-6 OF THESE DRUGS WERE SUPPOSED TO BE LONG TERM, AND WE WERE SUPPOSED TO HAVE BEEN TOLD TO ASK THE GP TO REISSUE THEM. No one had told us this on discharge. I’m shocked by this, and politely but firmly told the Hospital and the GP that their processes need looking at. The discharge letter eventually sent to the GP was also unclear...a box at the end of the letter said no action needed by GP. GP was pretty cross ! Whilst hanging about at the surgery to get all these drugs reissued, I chatted with people and heard similar stories. This sort of mess up is not unusaual.
So...my starter tip is...on discharge from hospital, or on chemo cycles, insist on a drugs briefing. Go through every box they give you..Find out if a drug is supposed to be reissued by the GP ( which means you have to ask them to do it ) or, if it’s a limited term item as part of chemotherapy cycle . I don’t know whether drugs are chemotherapy or “other” without being told, and neither will other carers.
I hope others can post similar stories to share experiences
