January 11, 2013 8:06 pm

Failing Max

Great Ormond Street, star of the Olympics opening ceremony, is one of the finest children’s hospitals in the world. But one mother has only traumatic memories of it
Leyla Boulton©Charlie Bibby

Leyla Boulton

Last weekend my 13-year-old son celebrated an important anniversary. There was no party, no presents and no speeches. Two years ago, in Paris, Max underwent successful brain surgery. Yet I cannot help but feel sad that he was cured not at Great Ormond Street, Britain’s finest hospital for sick children but in spite of it.

Max was six years old when he was diagnosed with epilepsy. He had fallen over in the school playground, his left arm twitching and his head twisting to the side. Anticonvulsants prescribed by a Harley Street neurologist swiftly stopped the fits and life returned more or less to normal. Then, two years later, in 2008, Max suffered an explosion of seizures in the middle of the night and was rushed to our local hospital in London.

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After a week at University College Hospital (UCH), our son was admitted to Great Ormond Street, where doctors produced a surprising diagnosis. They ruled the fits were not epileptic but psychological in origin – that what Max was experiencing was not epilepsy but panic attacks. So began weekly psychotherapy sessions to discover the root of those attacks.

The therapist quickly zeroed in on the fact that Max, along with my husband, Ralph, and our daughter, Alexandra, had come close to boarding the same Piccadilly line carriage as the King’s Cross bomber in 2005. At the last moment they decided not to squeeze in – minutes later many of those who had been standing next to them on the platform were dead. That shocking experience seemed to offer a possible trigger.

Max was weaned off his anticonvulsants but weeks later the seizures started to creep back. Great Ormond Street Hospital’s Rapid Assessment Neurological Unit (Ranu) stood by its original diagnosis, and, initially, Ralph and I were all too willing to believe that Max did not suffer from a debilitating illness. But despite the psychotherapy, the fits worsened.

By July 2009, in response to Ralph’s persistent questioning, the hospital agreed to admit Max for five days of round-the-clock EEG brain monitoring to check for epileptic activity. We were told though that a bed would not be free until November. The wait was bad enough but we had not reckoned with being cut adrift in the intervening four months. Max’s seizures escalated to more than 20 a day and were accompanied by a thrashing of head and limbs. Yet Ralph’s increasingly desperate telephone calls to Ranu requesting a consultation were always rebuffed.

Leyla Boulton's son Max recuperating at Sainte-Anne neurological hospital in Paris, January 2011©Alexandra Boulton

Max recuperating at Sainte-Anne neurological hospital in Paris, January 2011

“Wait until November,” was the message relayed by the nurses, who were our only point of contact with the hospital. We don’t think for a moment these nurses were uncaring or unprofessional. They simply did not know how to handle the situation in a system that had failed them as it had failed Max. It turned out, as the hospital later admitted, that Max should not have remained under the care of Ranu, which is intended for one-off consultations. Instead, he should have been assigned to a consultant at the hospital. Yet if anybody had noticed Max had fallen through the cracks of the system, there was no procedure for catching him.

When Max was finally admitted to Great Ormond Street in November 2009, monitoring quickly established he did indeed have epilepsy, and consultants began the search for medication that could stop the fits. But this was only the beginning of our son’s nightmare. In the space of a month, he was discharged by GOSH or UCH three times, only to face emergency readmission to hospital within days.

Max bore it all stoically. Yet we finally gave up on Great Ormond Street the weekend he suffered 90 seizures. At this point he was on a UCH ward but being followed by GOSH consultants under a system of remote supervision designed to share the hospital’s expertise with the rest of the country. Notwithstanding the severity of Max’s condition, UCH doctors found it difficult to contact their GOSH counterparts.

One evening, Ralph went into a quiet corner with a UCH doctor to discuss how to secure GOSH’s attention. He was the distraught parent but it was the doctor who was close to tears, saying: “I am so, so sorry this is happening.”

This appeared to us symptomatic of a broader failure of managerial culture at an iconic British institution: that such a well-intentioned system could ever have been conceived, let alone run, without sufficient provision. And if resources have to be rationed, as they clearly are across the NHS, then institutions must work with what they have got. Instead of insisting that Max wait four months for the five-day EEG, Great Ormond Street could – and, in retrospect, should – have offered Max an outpatient appointment for a shorter EEG. That could have been booked within days.

“Don’t let them discharge you this time, whatever happens; not until they’ve fixed Max,” our UCH nurse warned us as we waited for an ambulance to take Max to GOSH for the last time, on December 14 2009.

I was still in the UCH lobby when I got a call from a friend, Marie-Lorraine, in Paris. She is also an epileptic and had mentioned Max to her doctor, Francine Chassoux, a consultant at Sainte-Anne, a neurological hospital in Paris. Dr Chassoux had this message for us: “I’d have to see him but it sounds like his condition has been cooking for a long time, and now it’s exploding.”

Back at Great Ormond Street, drugs finally halted the seizures, but because Max’s epilepsy was deemed resistant to medication in the longer term, doctors raised the possibility of surgery. Some forms of epilepsy, we knew by now, were curable by surgery if the fits were triggered by a clearly identifiable section of abnormal brain tissue that could be removed safely.

We were able to take Max home for Christmas. In the meantime, we had also arranged to see the French doctors in early January 2010.

On the day we set off for Paris, even the elements seemed to conspire against us, with heavy snow shutting down the Eurostar, forcing us to travel on a storm-tossed ferry to France. It was worth it. The French doctors quickly put us at our ease: they listened to us and talked directly to Max, comforting and encouraging him.

After studying a PET scan of Max’s brain, Dr Chassoux, who turned out to be a specialist in Max’s complex type of epilepsy, proposed implanting eight electrodes to track down a lesion that she suspected of triggering the fits.

Where Great Ormond Street’s treatment plan always seemed to lag behind my son’s changing condition, the French team showed a sense of urgency, with the means to act quickly, immediately ordering investigative tests.

Looking back though, we felt that Great Ormond Street’s stretched resources were made thinner still by poor management and complacency. Yet self-doubt was never in evidence at the hospital and it acted on the problems we raised only when we submitted written complaints.

“Max was treated in a way that was not the way we intended or will do in future,” Carlos de Sousa, the chair of neurosciences at GOSH, acknowledged at a meeting in March 2010 in response to our first written complaint. He said procedures at the rapid assessment unit had been overhauled in response to lessons learnt from Max’s case.

A subsequent letter from the hospital said: “In retrospect we agree that there are features of Max’s history ... that should have prompted a review of his initial diagnosis.”

When I asked whether the NHS would pay for Max to be treated in France, Dr de Sousa argued that there was no need to go abroad.

“What I would like is that Max has the best possible treatment, and I’d like us to deliver it and for you and Max to trust us so we can deliver it. We have the largest programme for epilepsy surgery in Europe and the best results. Although we don’t have all the technology, we would like to think we are not worse off for it.”

Encouraged by the French doctors, who were always respectful of their British colleagues, we agreed to wait and see what London had to offer. Four months later, GOSH invited us to a consultation with a top neurosurgeon, William Harkness, and leading epileptologist, Professor Helen Cross.

The meeting started with a surprise, as Mr Harkness announced that he would recommend that the NHS fund Max’s treatment in Paris.

“We cannot even see [in tests] what the French doctors want to investigate, so I can’t even consider surgery,” he said. He stressed, however, that this was the first time he had ever sent a patient to France: “Normally, I see patients from France.”

Had the consultation ended there, we would have gone away happy. The Great Ormond Street specialists had more to say, however. Professor Cross, an advocate in some cases of epilepsy surgery, and cited in an all-party parliamentary report on epilepsy, Wasted Money, Wasted Lives, gave us statistics offering less hope of success than our French doctors did.

Mr Harkness asked how Max was feeling these days. Ralph told him that Max was often very tired and found it difficult to concentrate at school.

“I can see you are very intelligent people,” Mr Harkness said. “And intelligent parents sometimes think they can improve their child’s performance with surgery. Well, I can tell you they are often disappointed.”

We responded angrily to the apparent suggestion that we might expose our son to brain surgery to help him in class. When Mr Harkness said to Ralph: “You have high expectations, don’t you?” our dealings with GOSH pretty well ended.

On a rainy morning in Paris, on January 6 2011, Professor Bertrand Devaux removed a thimble-sized lesion from the right frontal lobe of Max’s brain in a five-hour operation at Sainte-Anne hospital. Our son has been making a steady recovery ever since.

Looking back, we can see our chief failing was to allow ourselves to be swayed for so long by Great Ormond Street’s reputation. If the hospital has really learnt from Max’s ordeal, we are happy for those children who may be spared what he went through. If it gains in humility, an institution whose name was ablaze in lights at the Olympic opening ceremony will be all the stronger for it.

Leyla Boulton is the FT’s main news integrator

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