I’M expecting some mortifying news about my cancer. Minotaura, the NHS administrator with this vital intelligence, has other ideas. Reports of my imminent death are a distraction, it seems, from her excitement about Epic, her new computer app. Taura (not her real name) could actually help me find out the latest on my life expectancy. But she pretends not to know because she’s more interested in what the computer can do for her. Patients be damned.
I’m in the late (i.e. last) stage of cancer and I’m down to my last chemotherapy option. My most recent and, I suspect last, MRI and CT scans will tell me everything about my death expectancy, whether the cancer has won its battle or whether my final drug, my Alamo, is still holding the invaders back before they are set loose to rampage round my body.
It’s Taura’s responsibility to give me that information. But in my five years in death’s waiting room I’ve seen many a Taura tell doctors where to go because of Covid, or that they’ve used the wrong form. The irony being that somewhere in Taura’s job application she will have said that she is passionate about patient welfare. She had to say that because her last job was conveying packages between hospitals, so it’s a big step up in patient-staff relations.
Has she got the empathy to do the job?
Read this conversation and I’ll let you be the judge.
‘Hello Taura. I had a scan in May and I’m still waiting for my results,’ I say.
‘Ooh, Nicholas, I don’t know what happened there. What are you going to do now?’
She doesn’t know what happened? What am I going to do now? She is the head of administration. She’s paid to know what happened! She’s supposed to rectify the situation. Water company CEOs may be despicable but at least they admit that those are their turds in the Thames.
NHS administrators seem to operate on three principles, depending how high they are in the administration: omerta, nescience and manana. Their best friend is the out-tray. If they can feed that and keep it well stuffed it looks like they’re doing a grand job.
I tried to trick Minotaura (named after the Greek mythical beast that kept people out of the NHS’s labyrinthine systems) into doing her job. ‘If you can’t tell me where my scan results will be, who can?’ I asked the monster. ‘Surely “they” organise a follow-up appointment as a matter of course. That’s what “they” have always done in the past.’
They being administrators like Taura.
That’s when Taura made her priorities known. She doesn’t give a toss about the patients, only the database on which their names reside. This computer system is the reason why she moved from physically transporting items between hospitals into a desk job. Computers. Qualifications. Money. This computer system was going to make her rich beyond her wildest career expectations.
Here’s an accurate quote of her attempt to cheer me up. ‘We’re getting a new computer system and it’s going to be so good,’ Taura said. Before I could say what about my life-or-death news, she continued. ‘Aah. You must have just been one of the unlucky ones who’s fallen through the cracks,’ she said. I’m sure she’s used that one before, when it took six weeks for my records to travel from Sutton to Kingston. This is a short distance for a hospital van (seven miles actually), but about three milliseconds for a database file on the information superhighway. That absence of computer records gave my bowel cancer cells an extra six weeks to burgeon because chemotherapy drugs could not be administered without my records being in order.
Still, never mind my impending death as I flounder in The Cracks. Taura is excited about her new computer qualifications. ‘It’s going to be Epic,’ she said. In the NHS Epic system, if you tab down, and you right-click on the little icon, you’ll be able to get tech stock prices on the latest drugs, she said. Or something like that.
Eventually I got my final consultation with The Oncology Prof. No thanks to Taura, but thanks to the wonderful Donna from the most beautiful of the many silos, or islands, that comprise our health service. The Princess Alice Hospice nurse assigned to my case, Donna has phone lines that never fall through The Cracks. They’ve given her all the direct lines. Everyone else’s, especially those for patients, will plunge them into a lifetime of infuriating exchanges with an arsenal of patient-thwarting systems.
It would later become apparent The Prof hadn’t really warned me where the next four horses of the cancer apocalypse were going to strike. I got that from information from a book in the library. It was called something like ‘Bowel Cancer for Dummies’ and written by a Dr Patel who realised nobody in the NHS tells you what you need to know when you need to know it.
So I was left on my own with only frequent trips to A&E to use as trial-and-error learning material. I love doctors and nurses (since that’s what my parents were) so I refuse to criticise them. But the advice they gave me on bowel and liver cancer was piecemeal, like trying to assemble a big picture of my pain sources, one jigsaw piece at a time. And obtaining those jigsaw pieces was painful and arduous each time.
A ‘game’ of trial and error is how it must appear to Taura and her colleagues with their new ‘Epic’ tool. Negotiating the cracks is a matter of life and death to the patients writhing in pain, down among the dead and dying men, Amen.
I got my pain management in order only after Donna got me a bed in the hospice. Since I was babbling incoherently when the transfer was made, thanks to too many painkillers and not enough management, I wasn’t too aware of the changes taking place in my environment. I knew I hadn’t died and gone to heaven. It was better than that. I’d passed out and gone to the Princess Alice Hospice in Esher.
As a medical establishment, it’s rated ‘I can’t believe this is NHS-funded’. A hospice makes sure its patients get the best possible End of Life. The people who provide this are mostly volunteers, working under a hierarchy of doctors, nurses and nursing assistants. The startling difference between hospital and hospice is that everyone is so well drilled. That’s all achieved without a computer, by people talking and listening to each other.
The Epic NHS is the opposite. I’ve been five years in the care of the NHS and my study is nearly complete. Doctors, nurses and nursing assistants are generally wonderful, but they are like remote islands. Between them like these enormous barriers, built using terrible IT systems and commandeered by civilian administrators looking for an easy life.
I’m ready to reveal the horrors lurking in the cracks between, if anyone in the NHS is interested.
Look out for a worst-selling book, The Cracks.
Nick died a week after this article was published, on September 5, 2023. He was 62.