Neurosurgeon Henry Marsh’s books have been revolutionary in illuminating aspects of the NHS few doctors are willing to discuss. He talks about the immense difference it makes when doctors listen, about the difficult decisions they have to make in weighing up benefit vs risk, the petty edicts by management that stop clinical staff from doing their jobs, the way politicians often institute ostentatious changes which are at best cosmetic and at worst hinder good clinical care.

Most revolutionary of all, Marsh, an eminent and highly respected expert in his field, has owned up to making mistakes. This is almost unheard-of in medicine, where cover-ups, euphemisms and blatant lies are often the response to human error. And, as Marsh demonstrates, and we all know, patients are usually reasonable people: if someone admits a mistake and is honest and apologetic, people often forgive them. Of course, if the damage is devastating, the patient may sue – in fact, Marsh has actively encouraged those he has accidentally damaged to take legal action, arguing quite rightly that his duty of care was to the patient, not to the hospital trust. But many patients’ anger will be defused by an open admission of fallibility, and an apology.

When Marsh’s third book, And Finally: Matters of Life and Death, was published last month, I was devastated to find my courageous, outspoken, irreverent, witty hero had been struck by terrible illness himself: prostate cancer.

Marsh is now a doctor turned patient. And Finally is a poignant account of how he coped with this transition. As in the two earlier books, his fierce intelligence jumps from one important topic to another, in a way that’s not just fascinating but also funny, discursive and self-deprecating. Marsh has always been his own harshest critic, and here he jeers at his decreasing fitness and the body changes that occur with the anti-androgen treatment, which he brutally (he’s only ever brutal to himself) insists on calling “chemical castration”, because it causes loss of libido and impotence. As ever, though, he manages to be droll: “I have acquired the plump and hairless body of a eunuch, and look rather like an outsize, geriatric baby.”

I, too, am a doctor turned patient, so I felt a particular tug of empathy on reading of his new predicament. I worked as a physician, gained the postgraduate physicians’ exams MRCP, and then, because of a passion for intensive care, became a consultant anaesthetist, before being struck down by scleroderma and antiphospholipid syndrome. I’ve lost the use of my hands – my fingertips and thumb developed gangrene and fell off, and my hands curled up. I lost most of my large bowel and my left leg to gangrene, and have pulmonary hypertension and heart failure. Most of my organs have been affected by fibrosis. So I was eager to meet Marsh and reassure him that joy and a meaningful life are possible despite severe illness.

The pandemic brought an awareness of mortality to many who had, till then, been unscathed by the scythe. At the time of writing, two weeks after my interview with Marsh, the dutiful Queen Elizabeth ll has just died, casting a sombre pall. Together with catastrophic economic forecasts and energy price rises it feels as if the rug has been pulled out from under our feet in many ways. So I desperately want the wise, droll, fiercely bright Marsh to remain in our firmament.

He is typically kind in coming to fetch me and my carer husband, Robert, from Wimbledon station in his battered Skoda, beaming with warmth.

“I’ve had a complete life. I’ve had lots of good experiences. What really matters now is what I can do for my family, and maybe for the world in my position as a writer”

As Marsh drives us to his semi, he asks about my amputation and we chat about the holiday he’s just had with his family. It’s clear he’s never happier than with his loved ones – his wife Kate Fox, a successful writer and anthropologist, his three children and adored trio of granddaughters. While he’s tough on his perceived flaws in the book, such as the dedication to work that entailed seeing little of his children when they were young, it’s clear he’s making up for that now. Mellowness suits him; he looks relaxed and happy. It’s a relief, because parts of And Finally were, naturally enough, concerned with his impending mortality.

Marsh and I settle on the sofa and I ask whether he’s still in remission.

“Yes, but because I presented with a PSA [prostatic specific antigen] of 130, which is only seen in 5% of patients, there’s a 75% probability of biochemical recurrence. And androgen deprivation therapy – which I prefer to call castration just to provoke people – always fails. You get castrate-resistant prostate cancer sooner or later. So you hope that the radiotherapy postpones it. I stop the castration treatment at the end of the year, and then, presumably, the PSA starts going up again, and then it’s time for chemotherapy, with more side effects. But that’s in the future. What I try to convey in the book is that I’ve had a complete life. I’ve had lots of good experiences. What really matters now is what I can do for my family, and maybe for the world in my position as a writer.”

“There’s nothing more frightening for a patient than a frightened doctor. So we have to learn to hide our feelings from our patients”

Did he find it easy to own up to being frightened, and has he always been emotionally open, I ask. “Yes, I did, and I have. It may be linked to the fact that I’ve written diaries since the age of twelve; I’ve always loved language. I was brought up in a well-read family – born with a whole canteen of silver spoons in my mouth. I’ve always written to try and control my own emotions. But also [to express] the feeling that life is transient. I started writing in more and more detail in my diary about my work, because I knew it was really interesting and I didn’t want it to be like sand slipping through my fingers. I wanted to turn both my experiences and what I felt about what I was doing as a doctor, and what my poor patients are having to go through, into a form that would last longer. My wife Kate encouraged me to publish.”

I observe that such humility is unusual in a senior doctor.

“It’s genuine… not an act. Although being a doctor is an act: we have to act and pretend. There’s nothing more frightening for a patient than a frightened doctor. So we have to learn to hide our feelings from our patients. We end up hiding our feelings from ourselves, because the best way of deceiving people is to deceive ourselves.”
When I remark on his humanity, he replies that it comes from years of experience. “40 years of seeing endless human suffering. I’d like to think by having written these books, I’ve helped the cause of openness and honesty and hopefully doctors and patients understand each other a bit better.”

I beg him not to destroy his diaries, and suggest he passes them to the British Library.

“I suspect I won’t get round to destroying them. They’re very boring. I destroyed all my teenage diaries when I was 22, and  I do regret that now, because I think the child is the father of the man and also I was a complete oik and… not exactly a nerd, but I was terribly shy and all my school peers were going out and kissing girls at parties and I was sitting up in my room reading lots of obscure books and writing poetry.”

The passages about past patients haunting him are among the most powerful in the book. I say that when we’re working as doctors we often don’t have the time or energy to allow our minds to think of the sad fate of our patients.
“Yes. And then, when you become a patient yourself, you’re no longer having to wear the blinkers. It was particularly hard when I didn’t know if I had metastatic disease (cancer spread) or not. In fact, I don’t, but there were two weeks before I got the results.”

Marsh had assumed the delay was due to bad news. But it was just the slow cogs of the NHS, together with a little carelessness. “I don’t blame him,” he says of his consultant. “Because the results were OK, I forgave him immediately.”

However, the book mentions how jarring he found it to see his oncologist laughing and joking with colleagues, shortly after telling Marsh he had cancer.

“That was fascinating,” he says now, because it was the moment he realised he’d “passed to the other side”. He explains: “You know John Bunyan’s The Pilgrim’s Progress, when the character is dead and gone to heaven and then he passed to the other side and the trumpets sounded? I’d passed to the other side. I’d become another old man with prostate cancer. I’d become a patient.”

By contrast, Marsh recognised what a difference it made to his mood when the oncologist asked about his son, and responded: “I wonder if you realise how much that simple human comment meant?”

Marsh has noted before that most patients want to discuss their illness face-to-face with a kind doctor. Instead, the stressed NHS relies on print-outs to educate people. “It’s box-ticking,” he sighs. “I was sent three ‘holistic’ questionnaires. I didn’t bother responding.”

We all want the reassurance of knowing the consultant has listened to your history and is au fait with your case, I suggest.

“Exactly,” Marsh agrees. “Although… when Shipman was arrested there were various patients demonstrating on the pavement outside saying, ‘Harold Shipman is an innocent.’ Because he was a very nice doctor.” (Yes, he’ll give you a nice injection, I murmur.)

I remind Marsh that he was famed for the generous time he gave to his patients. “Well yeah, I’m sure I sometimes failed but… I tried,” he acknowledges, reaching for an email from a grateful patient, which details how Marsh went above and beyond simple professional duty. “You don’t often get feedback like this at the time,” he adds. “The operation was a doddle. But seeing him at night and treating him as a fellow human being… I was terribly chuffed. [Yet] you have to be endlessly self-critical. It’s so easy to get complacent and you have to torture yourself all the time.”

The section of the book that most resonated with me was his assertion that a doctor’s own suffering increases their empathy with patients. I tell him that when my sister and father died when I was 21, I understood that for someone to express genuine sympathy, you need them just to sit with you, not necessarily saying anything.

“Exactly. As a doctor, when you’re breaking bad news, there’s these long silences and you want to fill them, but actually, [you should just] sit there, tolerate the silence; that’s all that matters. The news is usually simple. [It’s] something I learnt very early on when I was a senior registrar at Great Ormond Street. The kids would be sent in to have the brain scan and then I’d be called up to talk to the parents: ‘I’m terribly sorry, your child’s got a brain tumour,’ and that’s more or less the end of the conversation. They’re so shattered by that. You don’t go into the long technical spiel, you come back later and have a much longer conversation. But you learn the hard way.” Marsh had personal experience of this, since his son, William, had a brain tumour as a baby, and was thankfully cured.

It’s not only doctors who can lack empathy for patients. Shift-working nurses in A&E sometimes chat loudly all night and keep patients awake. It seems this problem is more likely in the overworked, under-resourced NHS than in the private sector, where the pace is calmer and staff feel appreciated.

“The thing about the NHS is that, although it’s crap, it’s terribly good value for money. And in any case, how do you measure efficiency in the NHS?”

Marsh nods sagely. “It’s the problem with socialised healthcare [healthcare the patient does not directly pay for.] The patient is expected to be deferential. I was staggered when Kate was admitted once as an emergency and they put her in a room with three men. I said to the staff nurse, ‘This isn’t on. I do understand, I’m a consultant surgeon myself, I know beds are very difficult. But Kate would rather die than be in there.’ They eventually found a side room for her, and the nurse said to me ‘Next time, put your complaint in writing.’ Meaning I should have accepted it and complained afterwards. I was gobsmacked. It was the rudeness of it. I mean, you bend over backwards to be polite and sympathetic.”

I suggest that politicians are often disingenuous or ignorant, for example, Liz Truss saying that cancelling Rishi Sunak’s rise in National Insurance – money destined for the NHS – will be made up by efficiency savings.

Marsh nods. “The thing about the NHS is that, although it’s crap, it’s terribly good value for money. And in any case, how do you measure efficiency in the NHS? I sat on a committee for NICE [the National Institute for Health and Care Excellence], and although NICE is excellent, the QUALY analysis is limited.”

It was from one of Marsh’s books that I learnt that, when “quality of life” is calculated to decide whether or not a drug is worth paying for, the quality of a disabled life is guessed at by able-bodied people. He nods when I say how ridiculous this is, since when I was healthy, I would probably have said I would rather die than live severely disabled. And yet I’m very happy and love life.

“It’s complete rubbish”, he snorts. “And that is the weighting system used for QALYs [Quality Adjusted Years.] The other thing is the necessity for hope. How can you measure the utility of hope? A good doctor will stress the 5 per cent chance of survival without denying there’s 95 per cent risk of disaster. Because feeling that someone cares for you is incredibly important to help frightened, anxious patients cope.”

We discuss how managers can hinder rather than help clinical care.

“The other time Kate was admitted, she was really ill. Emergency operation done quickly, fine. She then has to have six weeks of IV feeding in hospital before she’s fit enough for major surgery. This is in the days when they had somebody called a list broker who decided who would undergo surgery. So when she was admitted as an emergency, it was an emergency, but now she was an in-patient, it wasn’t urgent but nor was she a routine out-patient. And the trust would be fined for keeping routine out-patients waiting. Five days in a row, she was prepared, nil by mouth, in case there was time on the operating list, and cancelled each time. And then eventually I rang the surgeon’s secretary and she said, ‘It’s not up to Prof, it’s up to the list broker. Here’s the number to ring.’ So I ring the number. Ring, ring, the mailbox is full, you can’t leave a message. Then they decided they’d send Kate home. And they made her into an elective case and then she could be admitted and have the operation. That’s a non-clinician, a fucking manager deciding. I’m told subsequently they abandoned this system, but…”

I tell him a manager story from twenty years ago. One of the surgeons told me a manager had hassled him about why some of his aortic aneurysms stayed a week. Couldn’t they all be discharged the same day, like some? Of course, the ones listed as “discharged the same day” had in fact died in A&E.

“I really do wonder what value managers add to the NHS,” questions Marsh. “They were largely appointed to make cuts. I knew somebody who literally had been appointed to a new committee to decide how to reduce the number of committees in one hospital.”

He was shocked when told once that he was treating “too many” emergency patients because they only receive 30% payment for any beyond the target. “Isn’t that crazy?”

I tell him about an orthopaedic consultant friend of mine who told me he was scolded for seeing too many patients in his clinics, thereby adding more to his waiting list. And I was incensed by the story about the medical director who chastised Marsh and his colleagues for wearing suits. “That’s when I had my hissy fit and handed in my resignation,” he reveals.

But he can be hilarious about managers and admits: “Yeah, I like poking fun at them.”

His love for his family lights up the book. He’s also writing up the fantastical fairy stories he tells his granddaughters

I tell him I love the sense of mischief in his books, such as exaggerating his pain after the biopsy to receive fentanyl. “It’s true! ‘Oh, I’m in agony!’” he mimes. He’s even funny about the noise the radiotherapy machine makes. Has he always been mischievous? “Yes. I’m a natural disruptor. When I was a child, my father was an Oxford don. I was told many years later that I was banned from all the birthday parties because I was so disruptive.”

His love for his family lights up the book. He’s building a dolls’ house for two sibling granddaughters, having already made one for the third, and is also writing up the fantastical fairy stories he tells them every night over a video app. They sound magical, and threaded through with his dry humour. I’m not surprised there are plans to publish.
I ask whether he thinks that the surge of love that we feel for our children is partly hardwired because of propagation of genes, and he nods. “We forget that our feelings have been shaped by millions of years of evolution. Do you choose your feelings? No. One can choose to some extent to try and handle your feelings, modify your feelings, and they’ll be changed by experience, but our basic repertoire of feelings has been evolved by millions of years of mammalian evolution.”

“And also upbringing”, I interject. “A lot of what you experience in early life shapes you.”

“Of course”, he concurs, “there’s huge evidence. A Harvard study looked at children from Romanian orphanages, doing MRI scans and psychometrics, comparing the children who were fostered with those in the orphanage, and there was huge disparity. We need love. Love is a physical process in our brains. We need love and hope.”

I recently reviewed a book which quoted studies showing that children who experience trauma early in life have far higher surges of cortisol when they experience stress as adults.

Marsh agrees. “If you’re brought up in deprivation, the chances are you’ll continue to be deprived. All this ‘pull your socks up’ is right-wing nonsense.”

We talk about an achievement that has given him most fulfilment – the creation of beautiful gardens in the previously brutal concrete balconies of a St George’s neurosurgical ward.

“I’m very proud of those,” Marsh admits. “The neurosurgical patients can actually go directly from their beds to a garden. The marvellous family of one of my successor’s patients, who died, has now donated hundreds of thousands of pounds to extend the gardens. So you’ll have a green wall. And the staff love it too. During covid, the poor staff, dressed in PPE, would be able to have a lunch break and get out for a while.”

As he says in the book, happier staff make better staff. I ask him why governments are so myopic – for example the PFI [private finance initiative] building new hospitals.

“PFI was invented by John Major and the Tories as a way of fiddling the public sector borrowing in the view to joining the Euro. But they never dared implement it. And it was basically hire purchase, the never-never. It was a way of tricking the public… hugely expensive, and Allyson Pollock, an economist in Glasgow, pointed out at the time that government borrowing would have been much cheaper. You ended up with these very expensive PFI hospitals, which just reproduced the dull old NHS wards of 50 years ago with a sort of glossy atrium.”

I remark that they’ve also usually got far fewer beds often than the hospitals they’re replacing. Perhaps there’s a case to be made for a non-governmental advice body of clinicians who can take a long view of problems in the NHS and not simply reach for politically expedient myopic fixes?

Marsh nods. “Yes. The fundamental problem with the NHS is funding, because it’s tax-funded and the politicians aren’t willing to tell the public, ‘You’re going to have to pay more tax.’ Now, of course, there’s a cost-of-living crisis and it’s disastrous. My own feeling is there should be a wealth tax. Income inequality in this country is not that great now, apparently. But wealth inequality is massive. A windfall tax makes a lot of sense.”

How does he feel about the way politicians on both sides are now pushing nuclear as a green option?

“It’s complicated. I was reading a book by a Ukrainian historian [Serhii Plokhy] at Harvard, called Atoms and Ashes. His argument is there have been some serious near-misses. We all know about Chernobyl. If you had hundreds of nuclear power stations, there’s bound to be more accidents. But on the other hand, we’re doomed without change. There was a paper published in Nature [saying that] we’ve got an absolutely inevitable minimum one-foot ocean-level rise because of the way Greenland’s melting. We really are looking at catastrophe.”

I add that, as well as climate change, there are the horrific effects of pollution. Flora and fauna are dying on land, sea and air.

“I know. I used to go to Devon several times a year and the window would be covered in insects. Now there are virtually none. There’s been a study in Germany recently showing a 75% loss of insects. Birds feed on insects. The insects have all been exterminated. It’s probably pesticides and neonicotinoids.”

It bugs me that when a major oil company has a big spill and kills flora and fauna, they just pay a fine, which they pass on to the consumer, I tell him.

“There’s a very good book called The New Climate Wars and it’s all about the way the fossil fuel industries use the same PR company which dealt with big tobacco and it’s always this emphasis on personal choice. Guns don’t kill people, people do. Smoking, it’s a question of personal choice. Climate change, people should choose… It’s so the big companies go on making profits and destroying everything – a  completely cynical PR campaign.”

We move on to the limitations of human knowledge and I tell him the Penrose and Haldane quotes in the book reminded me of listening to Richard Dawkins speak at Edinburgh, where he said we only know a fraction of what there is to know about the universe, and there’s a lot more science to be discovered.

“There’s a certain intellectual humility rather than assuming that we understand everything,” comments Marsh, and we agree it would be far better if people were honest about what they don’t know, including non-scientists who attribute wholly baseless theories to explain intangibles.

“Science is… you open a door and then you’re in a room with a new door,” says Marsh. “That’s what’s so fascinating about it. And what’s so bizarre about religion is it’s all a closed system. All the questions are answered. It’s really very boring.”

Animals obviously possess consciousness, and have feelings, he says, and I tell him I once saw a blackbird drop down dead from the sky in front of me and was shocked by how its partner whirled in agitated circles above, making distressed noises.

“Experts” used to think newborns didn’t feel pain, I say. They used to operate on them without anaesthetic, just paralysing agents. Marsh says that, “As recently as the 1950s, they had visiting hours on children’s wards and parents were only allowed in for one or two hours a day.”

We muse on the nature of mortality, and how there is so much that’s not understood about the brain and consciousness and our sense of self.

“We don’t understand the nature of matter. I find it very exciting. People think it’s reductionist [to talk of consciousness and self simply being a product of billions of nerve cells in our brains]. But no, what it means is there is a vast, gaping hole in our knowledge of physics.”

I posit that I find this idea comforting.

“So do I. It’s the materialist version of the great cloud of unknowing.

Marsh is a proponent of assisted dying. I say I don’t have anything against it in theory, but that having turned from a fit person to a sick one, who is nevertheless happy, I hope he would never make a pre-emptive decision.

“I resent the fact that I am not allowed to decide,” he says. “But I agree, I’m not going to pre-empt my decisions. You cannot know what you decide until you’re actually in that position.”

When I am troubled by thoughts of mortality, I tell him, I am comforted by looking up at the night sky, and contemplating all that we don’t yet know.

“I always find the stars almost scary,” he muses. “They are so totally indifferent to me.”

I explain that I feel soothed by knowing I’m just part of this vast universe and my atoms will go back there.
“Yes. At some point in the book I say my atoms will be rearranged in a way.” Perhaps in his beloved wood: oak.

Before we leave, Marsh takes me to see the new dolls’ house. It’s stunning. Huge, elaborate, and beautiful, with floors hand-carved and polished. Of course, being Marsh, he can’t accept that it’s gorgeous, and finds imaginary faults. We walk into his back garden, up a path surrounded by the last of the summer’s glorious flowers, to his beehives. The bees are working industriously, creating honey. Marsh jokes that giving fresh honey as a gift is always a good way to get people on-side.

As he drops us off at the station with a cheery wave, I reflect that, even ill, Marsh has more motivation, enthusiasm, spirit and sheer fascination with the world than most people half his age. Long may this national treasure brighten our lives.