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.
me, mine, and other bits 
Makes me angry too. Anger is fuel. It is angry that keeps me working at the same old same old inequality thing, all those isms where people are not heard (currently mental health community conversations education reduce stigma etc). Please know that although I (and others I know of) do not join you in the Rare disease group , nor am I directly in UK patient empowerment, so many of us are glad that you do fight the fight in these places, helps us do our fights (do i mean disseminating /re-educating, blah blah ) in other places. Too late for you and your mum, but who knows who will be glad we had so much anger to dissipate somewhere. in the meantime – hugs and more hugs.
It was the conference at the weekend that made me want to tell the story again. I used to think I was overreacting, but all these years later I know I wasn’t. It’s still worth sharing.
We all have our battles, and we do get support and inspiration from others fighting on similar issues. I plan to grow up and be you 😉
be careful what you wish for, love you as you are
Horrendous. Every time.
I used to think I needed to get over it and wise up, but now I know I can use it, not just to remind me why I do these things, but to influence others in some way.
Some day, you will tell your stories, and the world will reel x
Fiona, I’m so sorry.
During the short time I’ve known you, you have never shown the anger from this hurt but I do see a very positive and determined lady, fighting for what is right and helping so many others.
Hugs xx
Joan, count yourself lucky 🙂 If you’d known me a long time you’d be sick listening to this one!
I do think we need to find ways of using our multiple frustrations and hurts. Focussing on the anger doesn’t help us or others. You know we need to be doing things, which is why you never stop! You do awesome things because you know that not everybody can/ wants to/ knows how to & you motivate others every day.
Barbaric! I can’t imagine how much his lack of concern and empathy cost you all. Sadly I think there are many doctors who have lost touch with the capacity to relate to the fear, confusion and loss their patients experience.
On a much sweeter note, I love that photo of your mother, Fiona. Just beautiful. ox
Clicking “like” seems wrong, but consider it a show of support. Sorry for what you both endured.