I love the National Health Service. It has lots of fantastic people in it. Dedication, expertise, caring aplenty. It does a lot with limited time, limited staff and limited budgets. It helped save my life, on more than one occasion.
We know that a lot of autistic people die horribly early. Around 16 years too soon. A big part of this is not being able to access healthcare.
Let's look at yesterday, for a member of my family, as an example of how autistic people can become so exhausted that they stop asking for help.
P has a sore eye. He's autistic - and that is marked clearly on his healthcare records at the GP and the hospital.
The eye had fixed itself with a simple antibiotic. But it had flared up again after we stopped treatment after the five days. So, he went to his GP. His own GP wasn't available. Another GP saw him, briefly, and said, "Oh, eye problem? I don't know about eyes. Go to Eye Casualty at the hospital, straight away". End of instructions. No time to get our autism Hospital Passport paperwork.
We drove to the hospital. We parked. We walked and walked. It's a mega-hospital. A huge site. We figured out how to get to Eye Casualty. Under the fluorescent lighting, with the stench of hospital smells, the deafening noise, the blinding reflective surfaces. Endless corridors, endless baffling signs. The photo above shows how I process medical environments, compared to others. Overwhelming.
We got to Eye Casualty and attempted to explain. "We've just closed", they said. "You'll have to go to Accident & Emergency".
We attempted to find A&E. A nice person helped us. Out into the street, along the road, into the building. To Pre-booking Reception. We had to explain to them, at length. They took notes.
They sent us to Actual Reception. We had to explain to them, at length. They took notes.
They sent to us the Triage Nurse. We had to explain to them, at length. They took notes.
In between all of this, sitting in a busy, noisy area under fluorescent lights.
They sent us to the Nurse Practitioner. We had to explain to them, at length. They took notes. "We don't know about eyes - we're not eye specialists", the Nurse said. They did some basic checks to make sure it wasn't an injury. It wasn't. We already knew that. Ever such nice people at every point...but...
They told us to go to Eye Casualty Department, tomorrow. But first, we have to phone to explain.
Today, we phoned, to explain. No answer. Left a message, explaining. Again. (No notes ever transfer between people or departments, it seems. It's always a surprise to each new person).
Then, we phoned again, to explain. They took notes. They can't see us at all today as they are too busy, but they may see us tomorrow. Or Thursday. Or perhaps Friday. An appointment is made. Our usual GP now won't see us, because we're in the Eye Clinic System and that has to run its course.
We were shaking with exhaustion by the time we were home from hospital.
For autistic people, this is the equivalent of a 25 mile marathon, it really is. And for absolutely no outcome. No-one we saw, in all of that list, was able or qualified to offer any diagnosis or treatment. (I believe that one prescription is required, but I am of course not a Doctor)
I am so thankful that I was able to advocate for my family member, and help them through this, but now both of us are pretty much wrecked for the day. And tomorrow, it has to be done again. As working people, it will have cost us three working days in total. The changes of routine, the uncertainty, the pain of being examined. It takes its toll.
The NHS is wonderful. But we are deeply afraid of it, because it asks the impossible of us. I'm sure it doesn't mean to. I'm sure all of this is for good reasons, but no-one explains what those reasons might be.
Does it take days and nine stages to reach one person to look at one eye in a meaningful way?
How can we work together to improve all of this for autistic people?
