Doing an internet search for information is common place. Many of us watch TV with the smartphone to hand to check social media or to find out where that actor appeared before. We search online multiple times a day, for directions, recipes, news or gossip. We search for health information too.
When my mum first got her diagnosis of Progressive Supranuclear Palsy in 2007, health information wasn’t quite as widespread as it is now. We came back from the clinic- while she put on the kettle I switched on the computer. The first thing I found was wordy and technical, but even a glance at the words was enough to know something nasty was afoot. I turned off the computer, drank the coffee and left her to the bus.
She could still get a bus then. Walk a few steps to the car, get into and out of the seat, walk easily to the correct spot in the bus depot, climb steps, show her ticket, walk along the narrow aisle and get into another seat. From this distance, such mundane actions are remarkable. My fiercely independent mum eventually lost all such abilities, and many more. That quick glance at the computer screen had set off warning flares in my mind, but I didn’t yet know.
Further searching, without a hovering mother, brought other information. Vision and cognitive problems. Falls. Potential loss of speech, swallow, balance, mobility, continence and any ability to communicate. Progressive Supranuclear Palsy is a devastating diagnosis, for the patient and her family. There is no treatment and no cure, just an ever creeping paralysis. The internet told me all those things before we went to visit my mum’s GP.
He’d got a letter from the specialist (who’d given us the 3 words and no other information). “Ah,” said the GP, “I don’t know anything about it. You may just google it.”
He didn’t suggest that we pull our chairs round his screen and search together. He didn’t suggest that he research or chat to the neurologist and get back to us. But it didn’t feel like he was giving us the power. It felt like he was washing his hands of us.
Without knowing anything about Progressive Supranuclear Palsy, he left my mum to find out the implications of her diagnosis for herself. He didn’t know that I’d got information that I couldn’t bring myself to tell her. We were relying on him to be a guide, a support, an interpreter between us and the world of progressive neurological conditions.
And he never was any of those things. He was meant to be the key person in coordinating her care (2 speech therapists, occupational therapist, physiotherapist, dietician, several eye specialists, 2 neurologists, the feeding tube surgeon, the social worker, the domiciliary care provider, eventually a nursing home, many emergency admissions due to falls, the palliative care team) but he never seemed interested.
He may well be overworked. He may well be terrified of the unknown. But, for us, he was the person we had to keep chasing. The person who never darkened the nursing home door until her final week. We referred to him as Dr Useless, so much so that the Brother had to phone me from the council office where he’d gone to register our mother’s death, “What is Dr Useless’s real name?”
The man who thought it was ok for a patient with a serious neurological illness to ‘just google it’ to find out anything at all. The man who didn’t think of what the impact might be. An experienced GP who didn’t pause at ‘Progressive’, or see the terrified mother and daughter before him.
Yep, turns out I’m still angry.