It’s been 10 days since a ambulance picked me up from home and dropped me off at one of my local hospitals. It all happened very quickly. My GP came out to my home and examined me, the next day a district nurse came to the flat to take many blood tests, and the next day I had to go for a x-ray at another hospital. And after that I was on my way via the ambulance to have my lungs looked at by a scanner.
I had pneumonia with blood clots on both lungs. The left lung had started to die and I was in terrible pain. But autistic me thought it would all go away. It didn’t and a lot of medication and treatment has followed. And the story should end there, but this story is about more than the physical treatment of my ailments. It’s about being autistic in a NHS hospital while sick.
Most nurses on the wards work to the medical model. Most are kind and human and go beyond what they’re required to do. And some are in the wrong place for the wrong reason and shouldn’t be nursing. But really they are a minority. What is lacking in NHS hospitals is autism awareness and holistic healing. Person centred care. It’s hardly surprising seeing the complete devastation the government is inflicting on the NHS
I went 5 days before I bumped into Staff Nurse Tammy North. Tammy did exactly the right things. She didn’t say she understood because she said she couldn’t possibly put herself in my place and she said she didn’t want to say she empathises because it didn’t really mean anything. But she did say sorry and she was brave enough to sit with me in silence and convey her respect that way. And then she got on with finding out what I needed and making changes so I felt happier. And she was funny. And charming. And she shared her life as I shared mine. And that was all it needed. All I needed. A intelligent and deeply respectful person who saw me as important.
Tammy wasn’t the only angel. There were the occasional student nurses, one who gave me his WiFi password, and another who went in search of some pyjamas that actually fit me.
And I want to mention the domestic staff who treated me like a human before a patient. Who joked with me and asked about my life, and I about theirs. Few nurses did this. They need to. Which reminds me of Noma. Staff Nurse Noma from Zimbabwe. Like Tammy North, Noma is a excellent nurse. A nurse who told a doctor to “ask the patient”. That made me smile. And she stopped a junior doctor from moving me out of my side room. This would have been very difficult for me. I had been put in my room by a kind nurse due to being autistic on my day of admission. I don’t think I’d have been able to have stayed in hospital any other way. Noma understood this.
Our NHS hospitals are full of incredible women caring for patients day in and day out. We are all incredibly lucky and blessed to have these women. They helped me cope in a environment that scares me and I will never forget them.
Postscript: I felt I had to add to this story as things have not been, and are not, as rosy as one might deduce from the original article. I’ve had people giving out medication totally unaware of what I should be having, and this is despite it being written in a book that records all my care. I’ve had medication stopped that was improving my health and then have been kept from returning home because of the effect of that decision. I’ve had a staff nurse and a junior doctor attempt to take blood approximately 8 times, and fail. I’ve been given injections in the stomach twice a day that nobody had checked was strong enough for my weight and size. And I have had no support with my being autistic. Zero. Despite my “Autism Passport” forming part of my notes. Despite my writing what helps and what hinders, I feel I am treated as a product. I feel invisible like a milk cow on a large factory farm.
Only when nurses such as Tammy North are on the ward does one feel safe and seen. And nurses like her are rare. Any other time it is a terrifying experience for me where one has no redress. One is powerless in the face of untrained or inexperienced staff. This is simply not good enough and the occasional Tammy North is not going to be able to save the situation. What’s needed is good autism awareness training for all staff, and a autism advocate able to visit the patient everyday and spend quality time with them. Hospitals don’t ignore diabetes and neither should they ignore autism.