OOPS #9 NHS Bingo (and Other Identity Shifts)

It turns out that navigating the healthcare system isn’t just about managing a condition—it’s also about holding on to a sense of who you are.

Well, I’ve nearly completed my NHSE Bingo Card: five consultants, four specialisms, five hospitals in two cities – all in the last two months.

I didn’t go near a doctor from one year to the next until I was 58, when I was diagnosed with a rare autoimmune neurological condition. Since then, the condition (and the treatment) have taken their turn at my lungs, heart, skin and digestion—hence the range of specialisms.

The consultants are, to a man and woman, compassionate, conscientious and competent. The nurses and receptionists are universally kind. But the system—dear goodness, the system.

The IT systems in two cities just twelve miles apart don’t talk to each other, so blood tests taken in one place can’t be read in another. The two hospital trusts use different apps for appointments, each with their own passwords and security rituals. Appointments go missing, so letters are still sent as a fail-safe—and thanks to the current state of the post, they can arrive after the appointment itself. It’s a small miracle anything happens when it’s meant to.

My wonderful neurologist refers me within her own trust—partly because colleagues understand my condition, but mostly because she can actually communicate with them. So I spend hours travelling to the nearby city rather than using my own local hospital. I’m grateful—they keep me functioning—but it does take a real slice out of life.

And that’s the thing. It’s hard for the system to remember that I’m not simply a “patient”: I’m a grandma, wife, mum, volunteer, colleague, gardener, baker, chicken-keeper, dog-walker…

It’s just as hard, sometimes, for me to remember that too.

Somewhere between appointments and passwords, I start to see myself mainly as a set of symptoms. And that’s never a particularly uplifting (or productive) way to spend a week.