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My Kafkaesque battle with cancer – and the National Covid Service


BORIS Johnson called on the whole of the UK to protect the NHS from the dangers of the pandemic. As a result, health services were almost completely withdrawn for the vast majority of the more than 60million people living here in 2020.

A ‘spontaneous’ campaign started where the public were encouraged go out on their doorsteps to clap the NHS and show their appreciation for the heroes protecting us all from Covid. People were encouraged to ‘witness’ (surveille?) their neighbours engaged in the five-minute ‘love’ session.

In the midst of the hysteria those who experienced serious health issues were forgotten and in effect abandoned. Many had serious illnesses that were not Covid, and had to find health advice and treatment in a system that was no longer interested in them. I was one of those people. I was expected to sacrifice myself to protect the NHS.

This is the story of my experience trying to find help when I developed skin cancer over the summer of 2020.

In May I noticed an odd growth on my left cheek which I thought might be an insect bite. The swelling didn’t go down, so I visited my GP who was happy to accept a face-to-face appointment given that I mentioned the C-word as a possibility. He agreed I needed a biopsy, just to be safe.

When I visited the local hospital dermatology unit, I was treated by four staff. The hospital was empty, and I was the only case they had that day. We chatted about Covid, about which they were all sceptical, but frightened by the overreaction and worried what was happening to the NHS. The two-week guaranteed turnaround time for the biopsy was now six weeks because admin staff were working from home (or the lab techs were twiddling knobs on PCR machines).

Five weeks later I got a call to visit the ‘big’ hospital, which was like a ghost town, and upon my arrival I was met by a Macmillan nurse. These nurses are specialists in cancer care, funded by charitable donations, trained to impart bad news in smart uniforms. She asked if I had anyone with me and whether I would like to sit down. I said, ‘No, I’m fine on my own, because I know what’s going on.’ She asked how and what I knew. I said, ‘Well, you are a specialist cancer nurse wearing a smart uniform, that shouts “you have cancer” so it doesn’t take a genius to know it’s melanoma.’

I asked ‘So, what’s next?’ She responded: triage. I asked where am I in the triage list, first, second or dead? She couldn’t help and didn’t really know what the triage process involved because it was all very new, having been put in place to respond to Covid. All the admin staff were working from home so there was no one to ask. She had no ideas about timescales or even whether I would be referred to a consultant.

Realising I was being abandoned I had the presence of mind to ask: ‘Assuming it involves going under the knife, what kind of surgeon would do the work?’ She said it would be a maxillo-facial consultant. Which hospital, I asked? She had no idea. Do you have a list of consultants? Again, no idea. Why not? Covid.

At least I had something to go on. I was now doing the job of NHS admin, and just needed to find the names of the top maxillo-facial consultants in the southeast of England registered with one of the big private health insurers. I looked on the internet. After ringing around, leaving messages and sending emails, a consultant’s secretary got back to me. She was working at home and was bored as their private patient lists were drying up – everyone was saving the health service by staying at home. I could have a private appointment in three weeks. I said I’d pay cash. No problem: £250.

I made the appointment at the bigger hospital with moments to spare after a ten-hour drive from Glasgow (I was visiting family). The consultant, who was great, inspected the melanoma, read the notes and recommended surgery as it looked ‘nasty’. Fine, I said. I will pay cash. How much? He said probably about £6,000. Great, let’s do it. He said it isn’t that easy, because non-NHS private surgery was suspended. I groaned with disappointment, thinking I had hit a brick wall. But luckily, he explained, a recent change in government policy meant that the NHS would remain protected and largely free of patients, but urgent NHS cases could be treated privately in private hospitals. So could I be treated as a private patient, which I was now, in a private hospital that had now been taken over by the NHS? He said no, that wouldn’t be possible. ‘So, what should I do?’ I asked. He said the simplest way out of this catch-22 is for you to become an NHS patient, for me to bump you up the waiting list and for me to forgo private payment. I immediately agreed to this brilliant, much cheaper but also very much more effective, plan.

Around a month later I was given a date for surgery at the bigger hospital, in the private wing, as an NHS patient. I was advised I would need a PCR Covid test, blood tests etc and a CT scan the week before, but that I would need to phone up to arrange this myself. NHS admins were working from home. After a few calls I got some appointments sorted out.

So off I went for a CT scan at the bigger hospital. Again, it was empty. The radiography suite was also empty (I knew from my wife’s breast cancer treatment six months before how busy it should be. It should be rammed.) There were only three patients including me.

Unfortunately, there was a problem: they could not do the scan because they didn’t have a photograph from the consultant that shows the melanoma, nor did they have all the notes. He asked, was I a private patient? ‘No, I am NHS.’ Maybe the notes have gone missing. NHS admins are working from home don’t you know.

I pointed at my left cheek and said: ‘Look, it’s there, you can see the thing, why do you need a photograph?’ Protocol, apparently. I asked, ‘So if you don’t have a photo what happens now?’ We’d need to cancel. Really? Yes, really. I quickly responded with ‘Well, how about if I help by getting my wife to photograph it, and I send it by email to the consultant (who I knew was on holiday) and ask him to email you the photograph with any notes you might need? And I can give you his mobile phone number so you can discuss it?’ That was acceptable. I got the scan.

Next hurdle was the PCR test. By that time, I knew quite a bit about PCR. It was very lucky I did.

Doing the PCR in some godforsaken car park was routine. What happened next was Kafkaesque.

A week later my surgery was booked for 6am admission, but at 10.40pm the night before I received a phone call from the hospital. There was a serious problem: they had lost my PCR test. Could I come in at midnight to get another one done? I asked why and was told this was because the hospital had a duty to maintain its Covid-free status and I couldn’t be admitted without a negative test. After a heated hour-long argument they refused to back down and I finished the conversation by saying: ‘I will be there with my bag at 6am as planned and you will need to get security to throw me out.’

After four hours sleep, I arrived for surgery at 6am. First hurdle was reception. They didn’t ask about the PCR test. Excellent, I’m in! I was then shown to my nice private room (a perk the NHS were paying for). I had a chat to the anaesthetist and the surgeon who agreed the Covid stuff was bollocks and both were happy to proceed without a negative PCR test. At last, some sanity. It was short-lived.

Matron arrived. She was very concerned. I was putting the hospital at risk! Why, I asked? She said I might have Covid because I didn’t have a negative PCR test registered on the system. I explained that they had lost it. She was horrified and bluntly declared that the surgery would have to be cancelled and I would have to go home. I kept my head and carefully explained the balance of risks from Covid versus cancer. It didn’t make any difference: she was immovable. I explained that she was being unethical and in breach of her oaths, was opening up the hospital to a legal suit and was endangering my life. I said I’d go to the newspapers. She wasn’t impressed by any of this. I said, ‘Well, I’m not moving because the surgical team are happy to proceed, and you will have to physically throw me out”.

She was stuck. With great reluctance she said she would deviate from procedure and seek out a new PCR test but warned it had an eight-hour minimum turnaround time. It would have to be analysed in a lab in a hospital 40 miles away. It was 9am. If they got the negative back by 5pm they could do the surgery. My operation was then rescheduled to be the last one of the day.

I sat back thinking: ‘These people really want to kill me.’

Trying to remain positive I cheered myself up by chatting with one of the nurses. She agreed the Covid nonsense was all bollocks and she was working in crazy land but was willing to agree with me that my experience was even more nuts than usual. She also imparted to me that the place was full of NHS patients and those who had private cover were being de-prioritised. I reflected on how lucky I was that my maxillo-facial consultant understood what was happening in a fast-moving administrative admissions policy landscape.

But this got me thinking about the PCR. Was there a way to speed this up? I realised there was. I knew there was a new nudge-DNA test kit that had been introduced to the NHS the week before. This had a turnaround of a few hours.

I buzzed for Matron. I asked, ‘Do you have any DNA nudge PCR kits onsite?’ She looked at me in wild surprise and responded by asking how I knew about that. I said PCR was a recent hobby of mine but don’t worry about the details, all you need to do is get the head of hospital PCR to obtain one: it’s got a fast turnaround time. She said they were still in their boxes, unopened. I suggest using me as a guinea pig. She said she’d talk to the head of PCR.

The head of PCR turned up with a brown box like an excited child with a new toy. He was happy to do the PCR and would swab me on the spot. They would have a result by 3pm.

At 3pm the moment of truth arrived. The matron came and said we had a negative result on our hands so the surgery could go ahead. I was elated but also feeling a little devilish, so I asked, ‘What PCR test was the negative result from?’ She didn’t know and didn’t think it mattered. I said: ‘Of course it matters, because if it was the first lab PCR test that was a negative and if the DNA nudge PCR test comes back positive then I have clearly caught Covid in your hospital! And I will sue your arse and get it closed down!”

After she had slammed the door on the way out, I settled in and enjoyed my well-earned rest before the surgery. It went ahead. It was a great success, other than the fact I had to discharge myself the next day and make my own arrangements for painkillers and to have my stitches taken out.

Did I clap for the NHS? I think you know the answer to that question!

This article appeared in Where Are the Numbers? on August 17, 2023, and is republished by kind permission. 

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Professor Martin Neil
Professor Martin Neil
Martin Neil is Professor of computer science and statistics at Queen Mary, University of London

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