The waiting list to get out

One woman’s struggle to get home from the Conquest

Prisoners have Habeas Corpus. Patients at the Conquest have the Discharge Officer. But it was 3 weeks before I met her. “Can you get my Mum out?” I asked. Oh no, says she, “she can’t be discharged without a Discharge Meeting”. I said it sounded very Alice in Wonderland. The Discharge Officer said it was her favourite book.

Mum had been admitted because she couldn’t swallow. No food or drink went down. The only remedy was a “PEG” tube so liquid food could be pumped direct into the stomach. It takes a 20-minute operation with local anaesthetic to fit. With a day or two to recover, she could have been home in five working days.

And she needed to be home: at 89 and with Alzheimers, it’s a daily struggle to keep her alert and interested. Every day in hospital made her condition worse. Unable to imagine she’d ever be let out, it must have felt like a life sentence.

26 Days to get home

After two weeks, she’d given up hope. It took 26 days to get her home.

First it took six days to check if she’d had a stroke. The scan showed nothing. With no clot that might shift in time, they said the swallowing function would almost certainly never recover.

PEG tubes were only fitted on Fridays, but first they wanted an opinion from the neurologist, who wasn’t in until the next Monday, and I couldn’t speak to him because Mum wasn’t his patient so it was “unethical”. Could the PEG tube operation be booked or pencilled in? No, they said, it doesn’t work like that.

Nothing, in fact, “worked like that”, because there was no rational common-sense process at work that you or I would recognise. The patient had to be fed, and the operation was easy, necessary and reversible. The questions they insisted on answering (“why had it happened?” and “how long would it last?”) did not affect what had to be done because there was no other option.

“Invasive”

Still they said they “had to be sure”. There was even the trendy excuse that the operation was “invasive”: evidently the temporary nasal feeding tube (painful, distressing, dangerous and needing an x-ray every time it slipped and was re-fitted) wasn’t “invasive”.

Nearly two more weeks passed before the op. Could she go home now? “Oh no, you have to be trained to use the equipment. We’ll have to book the man from the company.” Couldn’t they have done that before?

I had the training. Mum was pronounced medically fit to go. “Now can she go home?” Oh no, not until we’ve had the Discharge Meeting. “Can’t we leave anyway?” If you do that, it was intimated, you’re out of the NHS, no equipment, no food supply, no aftercare. “How come my friend had a hip replacement on a Wednesday and was home on Friday?” That’s different. (I might have known: our case had no government targets or boxes to be ticked.)

The Discharge Meeting

It took five more days to get everyone together for the meeting. There were two nurses, two women from my local surgery, two members of the Speech and Language (SALT) team, two earnest but irrelevant OTs, the junior doctor, the Discharge Nurse, the social worker and me. And after an hour’s introductions, re-cap on the case and trivia, finally we were allowed home.

It was useful to meet the women from the local surgery, but couldn’t it have happened in the first week? Did they have to come all the way from Warrior Square to the Conquest? Did it really require five more nights in hospital? How many other “bed-blockers” could be at home if things were organised a bit better? How many patients on the outside were waiting for that bed? And shouldn’t we be told an estimated date of discharge instead of facing an indefinite sentence.

Had it all happened because of Mum’s age? Was it bureaucracy and bad communication? Was it to guard against accusations of negligence? Whatever the reasons, it caused her unnecessary distress, cost money, tied up a bed, and raised issues of personal liberty.

Postscript: Finally, a happy ending. Three months later Lucy from the SALT team, on a routine follow-up visit, found that the swallow had come back, and we got the tube removed. And about nine months later, Mum started reading again: a lifelong passion that she lost in Baird ward of Conquest Hospital.

Also in: Health Matters