The British NHS – pain is still pain & death is death despite good intentions

My personal experience of the blind bureaucracy of Britain’s National Health Service – which I blogged about yesterday – continued after yesterday’s blog.

I blogged about how I encountered well-meaning bumbling when I had to have my eyes checked at the Ophthalmology department of my local NHS hospital in Hertfordshire.

My friend’s painful horizontal wisdom tooth is seen on the left

Later yesterday, though, a friend of mine encountered continuing blind bumbling at the Dental department of Guy’s Hospital in London.

She has had painful problems with a wisdom tooth for, I guess a couple of years. A couple of weeks ago, she was told by a very amiable doctor at Guy’s that the tooth could be taken out but, as it was close to a nerve, they would first have to take a cone beam mandible CT scan to see exactly what any potential problems might be.

Good.

It might take six weeks to arrange the scan.

Well, OK.

So it was a surprise when my friend got home yesterday night to find a letter from Guy’s Hospital telling her the appointment to have the scan was arranged for yesterday morning.

She had been away from home for a couple of days.

The letter from Guy’s Hospital – bad timing

The letter for a scan at 10.00am on Friday 15th February, dated Thursday 7th February, had been sent second class on Monday 11th February. In theory, this should have arrived on Wednesday 13th February. If you trust the Post Office.

My friend was at home on the Tuesday, away Wednesday/Thursday and returned at 2300 on Friday night. She missed the scan appointment at 1000 that day. The letter, we think, may actually have arrived on Thursday, one day before the appointment.

In the minds of the no doubt amiable and well-meaning people creating the letter on 7th February for an appointment on 15th February, that was enough notice. But then the letter was not posted until 11th February. It was sent second class so – even if the postal system worked effectively – it would not arrive until 13th February and there was no thought of someone being away from home on two consecutive days.

So well-meaning people bumbled into incompetence.

At the bottom of the letter, it says: “If you are unable to attend your appointment please contact the Department giving 48 hours notice… If you do not attend an agreed booked appointment your form will be returned to the referring Doctor and you will need to contact your Doctor for a new referral.”

So, even if my friend had received the letter on Wednesday 13th (with the mail being delivered late-morning) she could not have re-arranged the appointment with 48 hours notice.

And now, because she did not know about the appointment, she will have to go back to her GP, get another referral, get another appointment to see a doctor at Guy’s, get that doctor to make another appointment for another scan, wait for the system to arrange another scan and then hope she receives a letter in time to know she actually has a scan appointment.

Stafford Hospital – where 400 – 1,200 patients were  killed

In some parts of the NHS, of course, patients die because of lack of care.

A couple of days ago Lord MacDonald, a former Director of Public Prosecutions, was calling for police to investigate the “needless deaths” of between 400 and 1,200 patients at Mid Staffordshire Hospital between 2005 and 2009.

Five days ago, NHS Medical Director Sir Bruce Keogh announced that nine English hospital trusts were to be investigated because of abnormally-high death rates:

– North Cumbria University Hospitals NHS Trust

– United Lincolnshire Hospitals NHS Trust

– George Eliot Hospital NHS Trust

– Buckinghamshire Healthcare NHS Trust

– Northern Lincolnshire and Goole Hospitals NHS Foundation Trust

– The Dudley Group NHS FT

– Sherwood Forest Hospitals NHS FT

– Medway NHS FT

– Burton Hospitals NHS FT

My experience in Hertfordshire and my friend’s experience in London are of course – in comparison – wildly trivial. But they are a sign that, even when well-meaning people try their best, the NHS (perhaps like all large bureaucracies) is a mess.

In the case of the NHS, though, it is not just inconvenience which is caused but, in my friend’s case, continuing pain and, in many other people’s cases, death.

From tiny, slightly deformed acorns do vastly warped oak trees grow.

My friend phoned the number on the letter this morning and got no answer.

“It rings and rings for ages, then cuts off,” she told me.

So she then phoned the main telephone number at Guy’s Hospital.

“You get a voice recognition computer which asks for the department you want,” she told me, “If you ignore it, it gives you operator. The operator told me the Appointments Department is only open weekdays.”

American comedian explains the US healthcare system at Edinburgh Fringe

Andrew J Lederer alive and reasonably well in Edinburgh

“I mentioned to the audience that I was hot and that I wanted to take my sweatshirt off, but that I didn’t have a shirt underneath it – I was just wearing the sweatshirt – and they yelled Take it off!” American comedian and storyteller Andrew J. Lederer told me this week.

We were at the Edinburgh Fringe.

“I can’t resist a dare,” Andrew told me, “so I took off the sweatshirt and then went Oops! I just gave the show away! Obviously, they had seen the photo, but they didn’t know if it was real. They even asked: Is it real?

“Well, I told them, there are many ways of answering that question. No matter what it is, it’s real. A real WHAT – that’s the question.”

“What was the problem?” I asked him.

“I needed heart re-adjustment,” Andrew told me. “I don’t want you to give away too many details in your blog, because the fun of the show – the rollercoaster joy of the show – is coming along with me as these things revealed themselves – always surprisingly and always unsettlingly.”

“But you had a heart operation?” I asked.

“Oh yeah,” he told me. “It was thirteen weeks ago this week.”

“And why does your Edinburgh Fringe show have the title Cold?” I asked.

Andrew’s 2 shows at the Edinburgh Fringe

“Well, I’m doing two shows on the PBH Free Fringe,” he explained. “Cold is just an overall umbrella name for the two shows because last year’s was called Cold Chicken and this year’s is called Cold Comfort and I’m performing them both at this year’s Fringe.

“Cold Chicken was about when I was having my London breakdown and about me trying to figure out what was wrong with me: was it physical or emotional? And that sent me back to America – which resulted in Cold Comfort. I may be the only guy ever to go from England to America to get medical treatment!

“I set out to find out was I really having a physical problem or an emotional problem or both. And I found out that I needed open heart surgery. And then the day before I was scheduled to go into the hospital and have myself buzz-sawed in two, the phone rings and I get the answer to the question about what had been happening to me. Only I didn’t care any more because it was cold comfort. Great! I got the answer to the question but, by then, it had become a trivial question.”

“So the two shows are connected,” I said.

“No,” said Andrew. “They’re entirely separate. One is about me in London, falling apart. And the other is about me in New York trying to find my own pieces and put them together – or find someone who can do that for me.”

“And you had a serious operation just 13 weeks ago?” I asked.

“It’s a massively serious operation,” said Andrew. “They take you offline. You’re living on a heart-lung machine. It’s as serious as it gets. I had to be emotionally prepared to die.

“I had to say to myself: This could be the last day I’m alive. They’re going to sap away my consciousness and that may be my last moment of consciousness. I posted something on Facebook that night called Last Will and Testicles.”

“You’d never been that close to possible death before?” I asked.

“Well, I’d walked into the street and there are cars in streets,” Andrew said.

“Maybe this is the year of heart problems at the Fringe,” I said. “Rick Shapiro was in the hospital for three months and got out in late June, then arrived at the Fringe at the start of August. There’s Richard Tyrone Jones and his heart failure. And Carey Marx didn’t come because of his heart attack. Then your own operation was only 13 weeks ago.”

“In New York,” said Andrew, “I go to the gym three times a week.”

“You do?” I said.

“It’s cardiac rehab,” said Andrew, “and it’s just like the gym except it’s paid for by insurance. It’s at the hospital and you wear electrodes and they watch your heart while you do it. Because of budget cutbacks or whatever, you have to put your own electrodes on.”

“You’ve moved back in New York now?” I asked. “You’ve left London?”

“Yeah.”

“You’re going to stay in New York?”

“That’s a question I’m never capable of answering. I seem to go where the money isn’t.”

“Did you go back to the US because you had health insurance there?”

“Well, I only went back because of a wonderful thing that happened while I was in London.”

“Which was?”

“I went broke. Completely. So, when I went back to America, I was poor enough to get poor people’s health insurance. In America, you’re only allowed to get health insurance if you’re rich and can afford to pay for it. Or if you’re very poor. Because they want the middle class to go away. They get in the way. The rich people want poor people to stay alive so they can exploit them. So we have a healthcare system that is, in fact, the greatest healthcare system in the world if you have it, but you’re only allowed to have it if you either have a lot of money or no money.”

“But,” I asked, “if you’re an expat and have been living in London for a few years, how can they totally know what you have? You may have money salted away.”

“You wanna know the beauty of it?” said Andrew. “They just ask you how much money you make. You need no documents of any kind.

“By the end of my London experience, I had twitching eye muscles, my neck felt like it was pulling itself apart. I didn’t know if I was having a nervous breakdown or something was wrong with me. I went to Whitechapel Hospital and they said Huh. You’re alright! It went on for months. They didn’t care. It was not an emergency as far as they were concerned.

“So I went back to the States and started searching out the answers and, over a period of more than a year, it led me to more horrible questions.”

“You were able to search out the answers for free on healthcare as well?” I asked.

“You know what it was like when I got back to the States and had access to healthcare? It was like winning one of those competitions where you get to run through a supermarket with a giant cart and put as much as you can into it as you possibly can. I’ll take a foot doctor! And here’s a cardiac specialist! And you end up with a cart that’s just full of all these guys in white coats with various specialties, brandishing their diplomas.

“I looked up all my doctors online before I chose them. There are these great websites in the States where people go online and they comment on the doctors. They give the doctor stars like he was an Edinburgh Fringe show and they write their reviews.”

“So how did you choose which doctor to go with? You went on the number of stars?”

“Yes! It’s exactly the same as in Edinburgh!”

“I want to become an American citizen,” I laughed. “Do you get financial support once you’re out of hospital?”

“No. I was out of the hospital four days after they buzz-sawed me in two.”

“So, basically,” I said, “they do it all for free but then don’t help you support yourself when you’re recovering?”

“Well, you know what?” said Andrew. “The surgeon told me – and this is one of the top one percent of cardiothoracic surgeons in the United States – he told me, You know, when you get out, you’re going to do various things and some of them might hurt and, if it hurts… don’t do it. He didn’t realise he was saying the oldest, purest medical joke in the world!”

“Have you been performing comedy in America?”

“I haven’t been doing anything! I’m a patient! I’m a professional patient!”

“Have you got a fallback place to stay in New York?”

“In the 1950s, my grandfather, a very forward-thinking man, bought a large number of cemetary plots for the family. It was a steal, he told us. You know how much it costs to buy a  piece of cemetary land?

“So there have been difficult periods of my life where my domestic circumstances would have been better if I were dead rather than alive. I should have been able to live on my cemetary plot. It’s my land! Why can’t I live on my land? I’ve lived in smaller spaces in New York.”

“This is how big?” I asked. “A bit of ground maybe seven feet by four?”

“I own whatever the amount of space is that they need to allow you to be dead. I should pitch a tent there! Who would I be hurting? Who am I going to disturb? It’s beautiful greenery and I know the people there; close relatives everywhere I turn. And yet I’m told I can’t stay there unless I’m dead and what good does it do me then? It’s in New Jersey. It’s suburban. I would be a squire. What kind of free market laissez faire capitalist country is it where a man can own a plot of land and can’t place his weary bones there unless his bones are past the point of all weariness?”

“Well, you should do it,” I told Andrew. “I think you should go and pitch a tent there for the next nine months and that could be the subject of your Fringe show next year.”