John’s Story

“I was living in London living with my wife and my daughter; my daughter who's now 22. I'd been with City Builds for 16 years. They had a deal with a housing association. So, when someone moved out, we had to clear the flat and get it ready for someone else to move in. It involved a bit of everything, you know. It was the best time of my working life. I looked forward to going to work. If you can do that, the rest of your life’s a breeze.”

Had you moved from Edinburgh to London?

“Yeah, yeah. I’d aways been a massive West Ham fan, so I was always up and down to matches. I had done a YTS scaffolding scheme at £27.50 a week. After I passed that it enabled me to go down to London and watch some games. And it was through football I got a job there. After a match a guy said, ‘Are you working and living down here?’ I said, ‘No, I’ve just come down.’ He said,’ What do you do?’ I told him, and he said, ‘I own a scaffolding firm. Do you want a job?’ I said, ‘Yeah,’ and he started me on Monday. After that I moved to City Builds.

In 2021, over a weekend, I got severe back pain. That’s not unusual in itself, but this was something different, something I hadn't felt before. It was a numbness creeping down my backside and my legs.

I went to A&E Monday, Tuesday, Wednesday, Thursday and Friday. Five days in a row. By the Wednesday I was weeing myself. I couldn't control my urine. But the doctors weren’t examining me. As soon as they heard I was a builder they just said, ‘It’s sciatica.’ I asked, ‘Even though I’m losing urine?!’ By the Friday I was in really bad pain. They organised two porters to get me to a cab, which they did. They left me there.

So, I made a video saying, ‘I’ve just seen doctor so and so – I won’t say her name. She didn’t examine me. She just said it was sciatica, although I’m weeing myself and I’ve got numbness down my saddle area, my buttocks and my legs. My whole body doesn’t feel right. This is something bad. So, if I die, this was the last doctor I saw, and she sent me home.’ For the first time I was really scared of dying.

I hadn’t taken my wife because, being an East London girl, she gets straight to the point. She says I'm too forgiving. But on the Saturday she was coming, no matter what. And I'm glad she did come because she got them to give me an MRI. She told them she wasn't leaving until that happened. So, I went for an MRI and then went back to the waiting room. Suddenly a guy approached me ashen-faced, and said, ‘John, you've got to come with me. You’ve got to go for an emergency operation.’

On Sunday morning I was woken by a surgeon. He said, ‘Can you just explain why you didn’t come to the hospital sooner?’ I said, ‘Are you joking? Are you joking?’ Obviously, he didn't know. I said, ‘I've been here every day since Monday.’ He said, ‘You couldn’t have, because I’d have seen you sooner and if I’d seen you sooner this could have been avoided. Even if I’d seen you yesterday this could have been avoided.’

I started getting annoyed, but I was still confused. He went outside to the nurses’ station and shut the door - I was in a single room - but there was a three-panel window open, and I could hear him on the phone. I heard him saying, ‘Could you just check if John, blah blah blah, has been in this hospital recently, because I can't believe he has.’ And the next thing I heard him saying, ‘Are you joking me? He’s telling me the truth that he’s been in every day this week. Why the hell wasn’t he referred or given an MRI?’

The next thing I heard him saying was, ‘Which one of you is going to come up and tell this young man that he may never walk again, he's going to be incontinent for the rest of his life definitely, he won't have any more kids’ – which was soul destroying because me and my wife had planned on having one more baby – ‘and he won't be able to have relations with his wife. Do you realise what you've done to this man’s life? Which one of you wants to come up and tell him? I thought so.’ And he put the phone down.

When he came in, I must have had a look on my face. He asked me if I’d heard what he’d said, and I pointed to the window. He said, ‘I am so sorry.’ He went on to explain, but by then it was like it was bouncing off a wall. It did turn out to be Cauda equina syndrome, which is a very rare condition. Two different ambulance drivers had put that in their notes, I later found out from my lawyer.

And this is during Covid, so there's no visits, and I’m trying to explain to friends and family over the phone everything that’s going on. I can't see my wife. I can't see my daughter. It was horrible.  There’s this major thing in your life, and you can't even see your loved ones. I can't explain it. I've not got the intelligence to put it into words. How my wife even got into the hospital that Sunday was a mystery to me, because I had to leave her at the door. I later found out she used an emergency exit. Someone going out for a cigarette had managed to silence the alarm, and she got in.

The hospital where I got the operation was ready to just send me home in nappies until this nurse stepped in and fought to get me into a special hospital for spinal injuries, just outside London. I’ll never forget her, and I send her cards continuously for which I always get a Thank You reply.

They taught me how to self-catheterise. The other option was to leave a permanent catheter in, which is more prone to infection. So, I’ve got to self-catheter. I won’t go into number two; let’s just say they call it manual evacuation. Sorry to be crude, but this is my life.

London is very busy and every time I went out, I was coming back either having had a row, or thrown a punch at someone, or having been punched back. So, I said to my wife, ‘I’m going up to see my mum and family for a bit.’ That was two years, three months and five days ago.

Where we’re sitting here is the first place I came when I came out from my mum’s on my own. This exact spot. I used to come early because I thought it was less busy, and I just started saying ‘good morning’ to people. I came three or four times a week and eventually I got talking to a few people. Now there are four or five people that I talk to like you wouldn’t believe. There’s one guy who’s in his 90’s. At first, he was very stand-offish, but one day he stopped and asked if I minded if he sat down with me. I said, ‘No, not at all,’ and he spilled his story out. He looks after his wife who’s also in her 90’s.  She's got dementia.

Now I come here to see my mum on a Monday, Wednesday and Saturday. I love my coffee, so before I go to my mum’s I’ll have a few coffees here and get talking to the people I normally talk to and say hello to new people. The amount of people that I’ve met through being here is amazing, because I haven’t got the confidence otherwise. My biggest fear is having a number two accident.

After two and a half years of being in temporary accommodation I’ve just got my own flat. They’ve put the carpets and linoleum down, I’ve got my bed and all that in, I went to move in - and the boiler doesn’t work. I phoned the council, the guy came out, and when he came he looked at the boiler, went straight to a cupboard, lifted the carpet up, lifted a floorboard that wasn’t screwed down, put his hand in and said, ‘Yeah, it’s definitely leaking.’ It was like he’d been there before. He knew the story.

So, I've got to wait till the 28th of January, after getting the keys on the 17th of December. They gave me five days to move in, which was just impossible. I don't know where this leak will lead them. Perhaps they’ll have to rip up the carpets again.”

Where are you staying meantime?

“I’m back in the place where I was before. In that I’m very fortunate. I landed on my feet, after going through one place at the Haymarket called The Hub. It is so sad. There are young people in there, and they’re addicted to drugs and drink. There are a lot of people who don’t speak English. It used to be a hotel, and it would have been nice at one time. But I had my own room, my own bed, the linen was clean and so that did for me. I was in there one night and I was told I was getting moved to the Inch. After being in Leith so much of my life I thought, ‘O no! But anything must be better than this.’ It turned to be the best thing that happened, because the people that ran it at the time, Ted and Dot, were such lovely genuine people. They don’t ask for or want anything but will do anything for you. It’s just down the road from the Royal Infirmary. It’s called Aaron Lodge. Ted and Dot no longer own it, but they've got their own house on the property. They made their garage into living quarters with living room, bedroom, shower, separate toilet, kitchen area, and what they’ve done for me is unbelievable. Absolutely amazing.”