It all started with the touch-screen check-in facility at the A&E department of Hull Royal Infirmary – not exactly what I’d planned to be doing while visiting family. ‘What is the nature of your illness/injury?’ Well, unless they had an option for ‘Neurological autoimmune demyelinating disease, characterised by inflammation of the spinal cord, brainstem and optic nerves, resulting in blindness/paralysis if left untreated’ then I was screwed. As I presumed, no such option existed. No, I wasn’t breathless, I didn’t have chest pain, all of my limbs were in tact and so on, so I bypassed screen after screen selecting ‘other’. The computer confirmed that I had checked-in, and with no information at all as to why I’d decided to turn up at A&E on a Monday night, asked me to take a seat in a heaving waiting room. A man with dementia had been waiting 7 hours to be seen and had missed his medication. A young woman had been left attached to a saline drip that had been empty for 2 hours. Without enough seating people were left leaning against walls and crowding corridors. My leg was going numb.
I found a human to speak to about why I was there. I believed I was having a relapse of Neuromyelitis Optica (NMO), the illness that landed me in hospital just under a year ago – within hours I was paralysed from the chest down and partially blind, I had to learn to walk again. Treatment of relapses has to be quick to avoid permanent damage. I was armed with emails from my Neurologist in Scotland (where I’m lucky enough to live) explaining relapse treatment protocol and advice about performing a urine dip test to rule out issues caused by UTI’s. The human I was speaking to was the receptionist who was holding the fort of the waiting room, and she was incredible. Under huge amounts of pressure from the walking wounded her genuine smile never faltered, her caring tone never wavered, and she quickly got me to the top of the list to see a triage nurse. Because a human understands what an automated system can’t.
The triage nurse was also excellent. He eagerly took notes, understood the urgency of the situation and explained that he would call the neurology ward with the aim of me heading straight there for investigation and treatment. He warned us before he made the call however, that he would likely get his ‘head bitten off’ for bothering the ward. Excuse me? What kind of working environment is that? When a highly skilled nurse can’t call a consultant to discuss a patient without fear of being spoken to like dirt? All while a person’s health is at risk.
He was right. He came back and explained that the consultant would not accept me to the ward as I hadn’t ‘come through the right channels’. I had no idea what this meant. Apparently the ‘right channel’ to follow if you need to see a neurology consultant in an emergency situation is to have your own neurologist call them directly. Well, it was 7pm on a Monday night, so that was impossible. And my neurologist had told me to go to A&E in this situation. What did this mean? I had to follow the ‘accident and emergency channel’ instead, which on that particular night meant:
1. Wait 2 hours to see a doctor who will ignore advice given in an email from your neurologist.
2. Wait 5 hours for a bed in the Acute Assessment Unit.
3. Receive no treatment until…
4. A neurology consultant visits the ward in the morning, after 9am.
So that’s a 14 hour wait for treatment. 14 hours of my immune system attacking my spinal cord. 14 hours of inflammation leading to permanent damage of nerves – the nerves that help me walk, see, urinate, breathe. NMO causes permanent disability. NMO can kill.
Once I saw the doctor it became apparent that NHS England have absolutely none of my notes from NHS Scotland. To be fair, the doctor didn’t even have the notes the triage nurse had taken in the next room, so I’m hardly surprised they didn’t have any from Scotland either. But seriously? I’ve agreed for my information to be shared across trusts for this very reason, just in case I decide to be awkward and get ill while, say, visiting family in Hull. So again, I had to explain everything from scratch again, what NMO is, what happened last year, what’s happened since, what was new. It’s tough because NMO is a very rare disease, there are less than 1000 people with it in the UK, so most doctors including the one I saw have never heard of it, let alone encountered a patient with it. ‘Neuromye-what?’ is the most common response I get from health professionals.
I explained my concerns about speed of treatment and was reassured that ‘it’s okay, if your foot goes completely numb for example and you can’t move it at all, we’ll think about treatment, but the neurologist has told us not to treat until he sees you.’ Wonderful. Good idea, leave it until it’s too late. Up on a ward somewhere was a neurologist who could see me almost right away, but this ‘wrong channel’ business was creating unnecessary risk.
The emails I had from my neurologist were repeatedly ignored, particularly the bit that said ‘perform a urine dip test’. This simple test let’s you know if the patient has a urine infection, and in NMO a urine infection can cause a pseudo-relapse, a fake, albeit a very convincing one. Guess what? When they finally did the test I had a urine infection. The doctor couldn’t understand my relief because she didn’t understand my illness. She also wasn’t happy when I discharged myself either.
A week later I returned to Scotland and saw my neurologist. The UTI was a red herring – I had in fact had a minor relapse. If my leg wasn’t so weak I would have kicked myself for choosing to self-discharge from Hull Royal Infirmary and not waiting to see the neurologist in the morning. But after my experience in A&E I was desperate to leave, I had lost faith in the NHS. I was infuriated by automated systems and ‘channels’ and gutted to see NHS staff just trying to do their best within a broken health service. But the place is tangled in red tape, slashed to pieces by cuts, and managed by puppeteers determined to run the NHS like a business.
I had always imagined my first relapse experience to be awkward, troublesome – but I hadn’t expected it to reveal so much about the current state of the NHS. I hadn’t expected ‘channels’ to come before people.