NHS paid for my private hospital brain surgery to end my epilepsy ordeal

Alexander Seale has endured a lifelong battle with epilepsy – an illness that since childhood has caused him to suffer 20 to 30 seizures a day.

Medication reduced the episodes, which could last minutes and result in losing consciousness, but they came back with a vengeance as he reached adulthood, leaving surgery as his best hope to end to his daily struggles.

After seven years of waiting in limbo, Mr Seale, 35, got a long-awaited phone call. His neurologist said he would finally get pioneering surgery – a highly complex, day-long brain operation that could take place within a month. The risks included death and loss of language.

Mr Seale was a patient at the National Hospital for Neurology and Neurosurgery, a world-leading National Health Service (NHS) teaching hospital in central London known as Queen Square. His operation was scheduled for January 2023.

Relieved he might finally be over his epilepsy nightmare, he was nonetheless anxious about the cure.

“I felt nervous about having my head shaved, about my career, and about the recovery,” he said.

Then came another surprise.

The operation would actually take place at the Cleveland Clinic London, the capital’s newest private hospital – famed for its complex care facilities powered by AI technologies, and its private rooms overlooking Buckingham Palace.

“I told them I was surprised it was a private hospital. They said there was a long waiting list, so they had to operate there. It would be NHS doctors operating on me at the Cleveland Clinic,” he recalled.

Mr Seale is one of the growing number of NHS patients to receive publicly-funded care in the UK’s private hospitals. A record backlog of 7.2 million patients awaiting treatment – due to strains on the NHS and compounded by the pandemic – is being managed by shuttling NHS patients into private clinics.

It is a hotly debated strategy, first initiated by a Labour government 20 years ago, but accelerated today by Conservative Prime Minister Rishi Sunak. Critics view it as a Conservative attempt to privatise the NHS, but there are signs of cross-party consensus.

Opposition leader Keir Starmer, who has accused the government of neglecting the NHS, has also said that the private sector could help reduce waiting lists if it were to be used “effectively.”

This comes as a series of NHS strikes in recent months have affected waiting times, as well as hospital, emergency and intensive care services. In March, a British Social Attitudes survey revealed that just over half (51 per cent) of people are unhappy with the NHS – a record level of dissatisfaction in its 75 year history.

Mr Seale spoke to The National about his health journey – covering the years of waiting since he was first made eligible for surgery, then straddling the public and private spheres, an experience many more patients will undergo.

He was offered the surgery after a meeting with his neurologist at Queen Square in 2016. Two years later, he underwent a brain scan to locate the scar tissue that had been causing his epilepsy. The scan involved an open brain procedure. “The recovery was slow and lasted seven to eight months,” he recalled.

He had suffered from epileptic fits since the age of seven. “They were violent. I would fall down, I would scream, they lasted a minute or two” he said. “They weren’t painful, but I would sometimes lose consciousness.”

Back then, surgery had been suggested, but his mother declined. “A lot of the technology [available now] didn’t exist. They couldn’t decide where the epilepsy was coming from and they would have had to open my whole brain to locate it,” he said.

The fits disappeared with the help of medication, but returned in his late teens. “I started talking in my sleep. I would scream,” he said. “My fits were different. They lasted 30 seconds, I was conscious, I was speaking fast, my face would turn red.”

Despite this debilitating illness, Mr Seale pressed on with his career, working as a correspondent for French and Belgian TV in the UK.

“The fits were disturbing. I didn’t know when I was going to have one,” he said. “I would get them before I went on air. They were linked to stress.”

When he arrived at the Cleveland Clinic in February, the hospital had been open for just under a year. It is one of the few private hospitals in the UK to have MRI scanners within operating suites, which allow surgeons to scan a patient’s brain and check for errors before sewing them back up.

The hospital told The National it had performed more than 100 brain, heart and spinal cord surgeries in its first year, but did not specify the number of NHS patients.

A representative of the National Hospital for Neurology and Neurosurgery at Queen Square said: “The hospital is refurbishing its interventional surgical suite, where it usually undertakes a large number of specialist surgeries which require intraoperative magnetic resonance imaging for better surgical outcomes. The suite was temporarily closed in November 2022 and is on track to reopen at the end of this year.

“There are very few centres in the UK with this sort of facility, so University College London Hospitals entered into a contract with the Cleveland Clinic London for 12 months to ensure we could continue providing timely care for our patients.”

Mr Seale’s memory of the days preceding and following the operation is hazy.

He spent the eve of the surgery in one of the hospital’s private rooms. “The food was amazing, served on a fancy tray, all porcelain – not plastic,” he said. But there were no royal views from his bedroom. “There was nothing to look at, I was facing a small street.”

The next day, he met the NHS neurosurgeon and his team who would perform the surgery. Other staff, like the anaesthetist, and ITU nurses, were employees of the private hospital. Yet he was pleased to learn that his anaesthetist had previously been employed at the NHS hospital where he had his initial scan in 2018.

“I was nervous,” said Mr Seale. But he also felt brave for agreeing to the operation.

He coped with his fears by praying. “I prayed to Mary. The night before I listened to the Quran,” said Mr Seale, who is a Catholic and has Syrian heritage.

His biggest fear was losing the ability to speak. “The area causing the epilepsy is close to the speech function in my brain,” he said. Today, this risk is mitigated by keeping the patient awake for part of the surgery. “I had to be awake to check they weren’t touching the speech part of my brain,” he said.

It took him days to properly wake up from the 12-hour surgery. “When I came out I felt dreadful. I was nauseous, I didn’t have an appetite,” he said. “It was just the shock of having had this operation.”

He spoke only in French – a second language that he is fluent in.

“The nurse came and asked if I wanted tea. I said bien sur.

“For a few days I spoke French and a bit of gobbledygook. It took about a week for me to speak clearly and remember things.”

He then spent two weeks as an inpatient of Queen Square, sharing a bay with five others. “The nurses came from all over the world, Nigeria, the Philippines – that was wonderful. They always checked my blood pressure,” he said.

Therapists saw him daily to help him memorise words, make a cup of tea, and assist him in buying drinks at the cafe. Only the food was disappointing.

Since the operation, his seizures have stopped. “Now I do things normally,” he said.

Simple moments remind him of his progress. “I made soda bread for the first time, and used my hands a lot. My epilepsy previously prevented me from doing that.”

Mr Seale is among those who defend the NHS through thick and thin. He is forgiving of the seven-year wait, and the fact that - after 3 months back home - he has yet to receive the scheduled monthly home visit from a therapist.

He supports the current strikes and better pay for NHS staff. “The NHS is precious, it’s important to keep supporting it. They save millions of lives every day. I really admire what medics and neurologists do,” he said, recalling the hospitals he has been in all his life but which he now hopes he will no longer require.

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