On the road with brain surgeon Henry Marsh – Ukraine style

I felt relieved leaving the Soviet-style lobby of my hotel on Kyiv’s main thoroughfare, Kreschchatyk. Not that the service had been particularly bad or having to share a sauna with three Azerbaijani businessmen the day before unbearable.

Shock had shrouded me when a member of staff informed us the Right Sector party, Pravy Sektor, had just been expelled from the hotel, following the Maidan events of February 2014. Apparently, they had taken over the building, squatter-style. Had I arrived a week earlier, I may not have been brave enough to leave my room, let alone visit the health spa. I was reminded this was Ukraine – a country at war which had experienced a revolution and is always on the brink of experiencing another.

And had I arrived in Ukraine a week later, I would also have been too late for an extraordinary road trip from Kyiv to Lviv, heading west past forsaken villages with picket fences. I had arranged to accompany world-leading neurosurgeon Henry Marsh and his mentee, Kyiv-based Ukrainian surgeon Dr Igor Kurilets, owner and director of the International Neurological Centre. We were due to visit an outpatient clinic in Stryj near Lviv, the hotbed of Ukraine's cultural identity and nationalism.

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Neurosurgeon Igor Kurilets works with Henry Marsh in Ukraine.

Kurilets arrived to collect us in his spacious white VW van, warning it was at least a six-hour journey. The photographer, Ty Faruki, settled in the back, later discussing Marsh's collection of Leica cameras and admiring a shot of Marsh's old 1959 Jaguar XK150 drop-head coupe.

During the road trip I questioned Kurilets and Marsh about healthcare in Ukraine and why the recently retired 65-year-old English surgeon voluntarily comes here at least twice a year to perform difficult brain operations free of charge. Why were his bee-keeping, furniture-making pursuits and Welsh holiday home not enough to sustain him?

Love affair Marsh began his love affair with Ukraine when he first visited in 1992. He had been a consultant for five years and was invited to visit a neurological hospital in Kyiv by a businessman hoping to sell medical equipment. What he found in the newly independent state was primitive. He described his experiences in his book, Do No Harm – Stories of Life, Death and Brain Surgery.

This marked the start of a bond with a remarkable country on the edge; a country he says he loves.

It was then Marsh met Kurilets, a young neurosurgeon working in the State Emergency Hospital. He found the young man’s passion inspiring and Marsh began driving to Ukraine with car-loads of second-hand medical equipment – microscopes, operating tables, instruments, enough to equip an entire neurosurgical theatre.

The two continued to work together, but Kurilets’s attempts to change methods and practises in Ukraine quickly ran into difficulties. There were endless inquiries and denunciations and, on several occasions, members of his staff were sacked. He received death threats by phone and, at one stage, felt obliged to sleep in a different room each night.

He eventually left the state system to set up his own private clinic. Marsh’s commitment to the career of Kurilets and his fondness for the Ukrainian people shows no sign of waning.

He explained that the subject of Ukraine will form half of his next book.

“With my first book, I had nothing to lose, now I have my reputation to lose. Psychologists have shown we are always more worried about losing things than gaining things,” he said.

“You must remember that here the state was historically your enemy, so there is no inherent loyalty to the state. When workers join an organisation they have to produce a signed resignation letter which can be produced later to circumvent employment legislation. [So] their employer simply has to date the signed letter when he wants to sack them.

“When I first arrived in Ukraine, the economy was dire and everything was 50 years out of date,” he explained.

“They needed knowledge and technology. The head of Ukrainian neurosurgery allowed Igor [Kurilets] to visit England for three months so he could work with me and introduce more up-to-date ways of treating patients in Ukraine. As a result, he made many enemies when he returned. They felt threatened by his attempts to change things. Also, the head of neurosurgery, his patron, had died while Igor was in England.”

Marsh explained that Kurilets is one of a kind, a maverick with courage, compassion and extraordinary drive; a man who taught himself English by listening to the BBC World Service.

As we headed out of central Kyiv towards the sprawling estates that house everyone from doctors to street cleaners, Kurilets told us that already this year, 20 people had died from drowning after falling into the icy waters of Kyiv’s Dnieper river.

Marsh’s first book, a best-seller, was widely acclaimed. It provides the background to his views and is a starkly honest reflection of his time as a brain surgeon – the successes and the failures. It is this brutal honesty that people value – almost unheard of in professional circles where omniscience is all.

Recently, he has been more visible for his views on the doctors’ strike in the UK – that junior doctors do not actually have it so bad and we should be prepared to pay higher taxes to pay for healthcare.

As we travelled, I told him what I knew about health in Ukraine – a country often compared to Ireland given the national pride of the people, the tough existence and thatched peat-burning white cottages of a bygone rural idyll.

Ukraine is a country of about 44.5 million people. Birth rates and life expectancy have dropped since independence from the Soviet Union – Kurilets revealed that 20 years ago, life expectancy was under 60 but has improved now. Many of the nation's nurses have retired early, "young ladies on a pension".

The country has Europe’s worst incidence of HIV and there are no GPs.

“The experience of Ukraine tells us a lot about human nature and the difficulty of establishing good political institutions,” explained Marsh. “The rule of law is not a bourgeois fiction as Lenin claimed, but fundamental to a free and just society. There are many good laws in Ukraine but they are just not applied properly.”

I was struck by the amount of “apteka” chemists around. According to Marsh, chemists are the first port of call, the place where you can buy antibiotics.

State hospitals and clinics are basic and patients have to supply their own food and syringes. And doctors expect unofficial payment for treatment.

One of the patients Marsh had just met was preparing to sell her house to secure brain surgery abroad if needed. I had heard other stories independently – of Ludmilla in Kyiv whose five-year-old sustained a cracked skull after falling on concrete. It was only via a public appeal that she was able to save enough for an operation.

Kolya in Cherkassy region needed an operation for one of his children. As he was unable to work due to a heart condition, his wife, Natasha, had to go to the Netherlands to pick fruit and send money home for the medical fees.

Such tales are not surprising when you consider the standard of living in Ukraine. In December 2015, statistics bureau Derzhstat reported that consumer prices had risen by 43 per cent compared with December 2014 and by 79 per cent compared with December 2013.

Data from last November shows the average government wage is at the threshold of the subsistence minimum, even for those who are employed – wages averaged 3,168 hryvnia (€110) in healthcare. Inflation is expected to be 25-30 per cent in 2016.

The military action in the Donbass region in eastern Ukraine has exacerbated matters further.

We drove past village after village; the landscapes of the west became less flat and the bungalow-style dwellings less dilapidated through lack of money. Marsh pointed out Olesko Castle, the horse and cart transport, the frozen ponds.

Each community has one shed-like shop selling "producty"or foodstuffs, and one kiosk-like post office. Eventually, we left the snow and dust landscape and transferred for the drive to the centre of Lviv. Kurilets continued to the village home of his elderly parents nearby. The clinic The twice-monthly outpatient clinic in Lviv started early the next day – 7.30am – and the patients self-refer. Stryj Regional Hospital is German-built.There was snow on the ground as we walked in to the waiting room of patients, faces framed by colourful scarves or hats.

The clinic had already started when we walked in to Kurilets’s consultation room. He was finishing his session with a woman whose face was half paralysed due to an earlier acoustic tumour removal. She was told to return in a year.

Behind him, there were religious images on the wall as well as an advert for the screening of The English Surgeon – the award-winning documentary about Marsh's work in Ukraine.

The woman reminded me of Marsh’s view of the brain surgeon’s ongoing dilemma – to operate or not to operate.

“We know more about the Big Bang than our brains,” said Marsh later. “Brains are a big mystery.”

His maxim is to be honest about the risks of surgery – sometimes it can make things worse. This is not always easy for patients to hear, especially if they have convinced themselves surgery is the difference between life and death.

Following independence, Ukraine received more modern scanners, but there was little training on their use or the interpretation of the scans. Consequently, more minor abnormalities were discovered and there was an increased US-style tendency to over-treat – with the inherent risks.

“It is often said it takes three months to learn how to do an operation, three years to learn when to do it, and 30 years to learn when not to do it,” explained Marsh.

He urges Ukrainian medics to “always look at the patient, not at the brain scan”.

“How old are they? What do they know about their condition? What do they feel about it? Then, weigh up the risks of operating and not operating. For example, if you leave a tumour, will it get bigger? Will any subsequent operation be more dangerous?

“Your own experience may not be the best guide in these circumstances. Get to know the natural history of the condition instead. If it’s a small tumour, don’t necessarily operate.”

As if to illustrate the point, Marsh reminded me that the previous evening he and Kurilets had dined with priests in a monastery. One of the priests was paralysed, after diving into an empty swimming pool. At the time, Kurilets had advised that surgery would not help him despite the neurosurgeon where he lived saying it was essential. He accepted Kurilets’s advice.

Marsh went on to tell me there is no coherent post-graduate training programme for consultants in Ukraine, so taking a patient’s history on meeting them is not as methodical – surgery is their training.

Patients The next patient was a blonde woman, probably in her 40s. She had a green woollen scarf wrapped around her jaw and head and tied at the back. Her hands trembled as she complained of a shooting pain in her throat and ear; her voice was barely audible.

She was taking carbamazepine for her epilepsy and Marsh reassuringly suggested she could safely dramatically increase her dose to cope with the symptoms.

When the next patient arrived, Marsh started speaking Ukrainian and nodding “tak” or “yes”.

Maria, a short-haired woman in a mauve jumper, came in with her daughter. She recalled that two years ago she had a bad feeling in her ear, swayed when she walked and that her head was spinning.

Her daughter hung on to Marsh’s every word as he focused on the brain scan images. His conclusion? That the tumour was slow-growing and not cancerous.

“After 20 or 30 years you may have problems,” he told her. “But you are more likely to die of something else. I could remove the tumour but there could be risks.”

The sense of jubilation filled the room as the daughter burst into tears. As with anywhere else in the world, the words “not cancer” caused elation.

As they left, Kurilets chatted with them about their village. Born locally, he joked he may plan to buy their home as the setting is so scenic.

Relief also came to the man with gold teeth who entered next. He was informed the scan of his pituitary tumour (a skull-based tumour) showed no signs of change since last year. As the tumour was benign, Marsh did not advise operating.

We were then reminded we are in the centre of Ukraine’s key cultural region when the long-haired MRI scanner assistant made an appearance. She was reluctant to be photographed despite making a clear statement about her identity by wearing national dress – an embroidered white dress.

Then a familiar face appeared. I remembered 37-year-old Marian from The English Surgeon. The TV crew had followed the route from his village home to Kyiv where he had surgery – an awake craniotomy.

Movingly, the locals had supported him; you saw them praying intently in the local church for him and settling him on the shabby bus which took him to the capital.

Marian’s father is dead and his mother is an alcoholic. Today, he is cared for by leather-jacketed Stanislav, a friend who ensures he takes his anti-epileptic medication three times daily to control his fits which now occur about three to four times a week.

Marsh advises the latest scan could disturb Marian. It might show the tumour is growing back, but then it might not – the prognosis is unclear.

He asked if Marian still has the kitten seen in the film. This exchange enabled me to witness the sensitivity Marsh expresses towards these patients: there is as much gravitas in what is not said – the silence as he listens when people speak – as in the advice he dispenses.

The case of Martusya then illustrated how a paucity of aftercare can exacerbate life for the whole family. A former music student, her heart stopped suddenly seven years ago and she was in a coma for two weeks. She is now totally dependent on her mother, and it has proved difficult to find help with rehabilitation.

Kurilets told her mother she needs to be with people so she can interact. Other doctors are called into the room and quizzed on day centre care. Her mother had already tried one place but she said her daughter was scared by the other centre users. The doctors persisted in exploring this, suggesting an alternative.

Martusya’s mother’s struggle was a reminder of how limited rehabilitation facilities are in Ukraine.

Another visitor arrived, this time a “next generation” medical student keen to learn from “Mr Marsh”. However, for Marsh, there was a clinic to run and tutelage had to wait.

Scans

Iryna arrived with her mother and father. Aged 22, she was examined in December as a result of having severe headaches and numbness in her right arm and leg. At its worst, her condition means she has numbness in her tongue, nausea and vomiting.

Marsh, Kurilets and the MRI assistant intently examined the scans. Marsh diagnosed acute hydrocephalus quickly and urged Kurilets to drain the cyst to avoid blindness or worse. He feared rapid deterioration in the tumour which presented as a small white egg-like shape on the scan.

A decision was then made for the young woman to have an operation the following Monday or Tuesday in Kyiv.

“Never mind what the scan says, the procedure should have been done,” insisted Marsh.

Other patients arrived for advice on slipped discs and an arachnoid cyst which Marsh decided did not need an operation. One woman with a benign dermoid or epidermoid lesion was advised to have a repeat scan in six months.

The bodies in the waiting room started to disperse but not until smartly dressed Ruslana appeared. Aged 30, she has had two episodes of losing consciousness, even falling during her pregnancy.

On examining her scan, Marsh decided there was no mass effect, so consequently no growth or tumour. However, to ensure accuracy, he promised to photograph her scan and ask a London colleague for a second opinion.

This is Ukraine and the work did not end in the consultation room. As we left, Marsh was flanked by a family with a young son who has a small tumour called a craniopharyngioma that does not need surgery. He assured the teenager it was fine now to participate in all sport.

And the working day is not completed once Henry has left. He was then driven to the launch of his book in Lviv. Later, he addressed an audience of 1,200 at a gathering of health professionals organised by Dr Oleksander Filtz. The event was so over-subscribed the talk had to be repeated – it lasted nearly five hours.

The fact a speech entitled “Why do doctors find it so difficult to be honest?” drew such attention is surely proof that health professionals in Ukraine are tired of propping up a broken system and want something different.

Henry Marsh’s input certainly provides that. Next week: Back on the road with Marsh