My 20-year-old son was paralysed after diving into a swimming pool – the NHS made his short life unbearable

Tom Lazarides
The coroner found that Tom Lazarides died in part due to the lack of funding and his treatment by NHS England

On June 13 2020, our 20-year-old son dived into the shallow end of a friend’s swimming pool and broke his neck.

Tom was at the end of his second year of a business studies degree at Durham University. Friends leapt in and saved his life: Tom only survived because he was so young and fit – qualities that would later serve to work against him.

In the period after his accident and before he died, Tom’s life was made unbearable because of the way he was treated by the NHS. Because of their refusal to contribute, my husband and I spent so much money we are currently having to sell our house. Now, with the help of our MP, we are trying to change health service policy towards young adults with spinal injuries.

This tragedy could have happened to any other parent, which is why I’m telling my story – so no parent has to go through something like this ever again.

“There wasn’t one person on this green earth like you and I’m certain there will never be another again,” said Tom’s best friend, Will, in his eulogy. “‘Laz’ had an energy that would light up any room, with his infectious laugh, pure heart, witty charm and cheeky smile,” added Lolly, another friend. Tom had so many friends. They told us he was so popular because he never judged anyone. Tom was a talented cricketer and golfer, with plans to work in finance when he left university.

Until that day nearly four years ago, we were a happy family. I was an art teacher; my husband Marcus is a barrister. We have three other children: Theo and George, now aged 28, and Kate, now 18. Tom was devoted to his dogs Poppy, Buster and Jumble.

Bridget Lazarides
Bridget Lazarides: 'Our mission now is to ensure that no other young adult or family has to fight in the way we have done' - Rii Schroer

June 13 was a sunny day. Lockdown was just lifting and I was walking my dog along Beachy Head. At around 3pm my phone rang: it was Tom’s friend Felix. “Tom’s had an accident, but don’t worry,” he said, “the ambulance is on its way.” I knew immediately that I had to worry. I switched into practical mode, got in my car and drove to nearby Etchingham, East Sussex, where the party was taking place. I was a mum, I was going to sort this out and make sure Tom was sent to a good hospital. More importantly, I had to let Tom know how much I loved him before he was taken away.

Tom was conscious and lying at the side of the pool when I arrived. He was paralysed. But he wasn’t hysterical; in fact, he was rather calm: he had thought he was going to die in the water. I discovered Tom had dived into the pool, but for some reason his arms had moved awkwardly and he had hit his head on the bottom of the pool.

Tom with Felix and Callum
Tom (centre) with his friends Felix and Callum

We later found out that Tom had a compression injury. He had fractured his C4 and C5 vertebrae, he also had a small break at C1. His spine had jammed into his neck and bounced back again, like an elastic band. The fact Tom was so fit had made the impact worse, though it also meant he survived his injuries, where others may not have done. An air ambulance arrived: Tom was taken to intensive care at King’s College Hospital in London, while doctors assessed how serious and how permanent his injuries might be. It was a case of “watch and wait”.

For the first 10 days, Tom seemed to be making progress. He regained arm movement and some hand movement. But then he reacted to an anesthetic during an operation for a tracheostomy to help his breathing. His temperature soared, leading to a condition called rhabdomyolysis.

This meant that Tom’s muscles disintegrated, leading to the failure of his kidneys. He had to be put onto dialysis. He was unable to open his eyes or breathe unaided. The tracheostomy meant he was unable to speak for three months, having to point out letters in the alphabet to spell out words. For Tom, that was the worst part of all.

As you can imagine, our anxiety as parents was indescribable. But all our energy was spent pushing and fighting against the Covid protocols, still in place in summer 2020. We had to fight for everything: fight for the young doctors to read Tom’s notes properly, fight to be allowed to see him for more than three hours a day. For as long as Tom was alive, I was not going to collapse. His friends played a massive part in keeping his spirits up, with his schoolmate Gracie setting up a rota so people could come and see him, bringing Poppy, his spaniel, to visit him.

Tom with family
Tom (right) with his brothers, Theo and George, and his sister Kate

The NHS was brilliant at saving Tom’s life, by sending the air ambulance and the initial emergency care. However, once the immediate crisis had passed, they did not seem to place a priority on valuing his life afterwards. It felt as though the entire system was stacked against us.

We were never told definitively that Tom would never walk again – we found that the doctors preferred not to be precise. But in October, Tom was discharged to Stoke Mandeville for rehab, still unable to walk, use his arms, or speak properly. He was placed on a ward with two 50-year-old men and not allowed to leave the room. It was effectively imprisonment.

The hospital pool was closed; the gym filled with PPE. Physiotherapy was restricted to four 45-minute sessions a week and Tom had no speech, occupational, or psychological therapy. We were only allowed to come and visit him because Durham University wrote a letter insisting he wouldn’t be able to continue his degree without support from his family.

On Christmas Day, I went to visit Tom in hospital. To avoid being thrown out, I hid under his bed every time a nurse came in. Eventually, they threatened to call security. It was like an episode of Keystone Cops.

All these indignities were appalling, but far worse were the long-term plans the NHS had for Tom.

Tom with friends
Tom (left) with Lolly and Will

Six days after arriving at Stoke Mandeville, we were informed there would be no “Continuing Care” money available to help his recovery at home with his family. Instead, Tom would be discharged to a care home. This would not be a specialist rehab facility, but a geriatric home with elderly people. There would only be basic medical care, and no requirement to provide rehabilitation, vital for mental and physical health.

On hearing this prognosis, Tom mustered enough voice to tell his case-worker to “f--- off”. He knew this wasn’t an empty threat. One of his fellow patients, a man in his 40s with young children, was later sent to such a facility.

One doctor told us: “Get your son out of that s--- show now.” Two nurses at Stoke Mandeville came to see me separately and said it was vital to get him away from the hospital.

We had enough money saved, and were supported by amazing friends, for Tom to spend six weeks at Steps, a rehab facility in Sheffield, where he made good progress and made great friends. But in July 2021, it was time for him to come home and I had to give up my job to look after him.

As we had refused to send Tom to a care home, the authorities effectively cut him off completely. While we continued to write letters and battle for financial support, we turned to eBay, where we sourced and bought a second-hand hospital bed, a hoist to get Tom in and out of bed, a machine to help him cough (vital for keeping him alive) and a wheelchair. We spent hundreds of thousands of pounds, borrowing money from everywhere and everyone, including my 90-year-old mother.

I had to watch Australian YouTube videos to learn how to manage Tom’s care and take photographs of machine settings to use equipment needed to keep him alive. I was informed that I could not be shown how to use vital equipment in case it invalidated hospital insurance.

Tom with friends
Tom (centre left) with his friends Eve, Felix and Gracie before the accident

For the first year at home, Tom did pretty well. His friends continued to rally around, and despite his disabilities, he continued to study for his degree and even traded cryptocurrency. His visits to Crystal Palace Football Club and Wembley Stadium to see his beloved Liverpool win the FA Cup Final helped hugely. Tom spent evenings with his godmother, Mandy: watching Ted Lasso made him howl with laughter. He even had me setting up assault courses for the dogs.

But Tom needed two carers at all times because the risks to his health were so serious. So we hired someone to be with him to support me.

We were repeatedly refused funding for Tom, despite the fact he clearly met the criteria for NHS continuing healthcare funding. I was even told that Stephen Hawking would have been sent to a care home if he had lived in Lambeth because, as the nurse assessor stated, “it was cheaper”.

On the day before Tom died, NHS England told us that, for various reasons of bureaucracy, the assessment process would have to start again. I explained that without the funding Tom so clearly needed and obviously met the criteria for, he would die.

The next day, November 11, Tom’s friend Jonny flew to London from Jersey and took him to see a Crystal Palace match. We thought Tom might have an infection, but he didn’t have a temperature. I went to sleep next to his bed. Tom woke up at 2am, and I told him how much we loved him. He didn’t wake up again. We realised Tom had died as the Armistice Day bells began to ring on Sunday morning.

The devastation of accepting your beautiful, brilliant son has died is difficult to articulate. We knew the man he had become, his dreams, his aspirations, his plans. He was beginning to see some light in his situation and had so many ambitions.

We are still waiting for an inquest to determine exactly how Tom died, but one theory is that having aspirated some food the week before, he had developed fluid on his lungs. He possibly lost consciousness due a condition related to his spinal cord injury, which causes a dramatic increase in blood pressure. This would not have happened had there been two carers with Tom.

Tom’s funeral took place on December 8 at St Stephen’s Church in Dulwich, where he had performed his primary school carol service. More than 350 friends attended. Theo, George and Tom’s friends carried his coffin. Poppy, Tom’s dog, came with Kate. Choristers sang Once in Royal David’s City. A memorial service in January saw another 350 friends come together and weep and laugh while listening to You’ll Never Walk Alone. These services were exceptionally moving. But no one should have to be at their child’s funeral.

And so, for this reason, we have continued to seek the help of our MP, Helen Hayes, who has supported Tom throughout this journey. In February, Helen stood up in Parliament, bringing to MPs’ attention the plight of young adults with spinal injuries and the paucity of CHC funding. Helen Whately, the Minister for Health and Social Care, has agreed to look at this issue.

With devastating irony, four months after Tom died, we were informed that he should have qualified for CHC funding from July 2021, the date he came home. The coroner may find that Tom’s death was in part due to the lack of funding and his treatment by NHS England.

Our mission now is to ensure that no other young adult or family has to fight in the way we have done.

Lazarides family
The Lazarides family

My husband and I vowed that, in Tom’s memory, we would continue to fight a system that feels like it’s modelled on a Victorian workhouse. Can you imagine how it would feel for a young adult, sent off to a care home, with no agency to live their lives, which could still be so full and productive?

A spokesperson for Buckinghamshire Healthcare NHS Trust, which operates Stoke Mandeville hospital, said: “As a centre of excellence, our aim is to support people to lead fulfilling lives and be as independent as possible dependent on their level of spinal cord injury. We fully recognise the fact that individual patients spend many months with us for rehabilitation and the National Spinal Injuries Centre (NSIC) is effectively their home for this period.

“As such, we offer an open visiting policy and are proud of our record in supporting patients to lead fulfilling lives, recognised in the award of CARF accreditation – Commission on Accreditation of Rehabilitation Facilities – which is a worldwide organisation. The NSIC is the only such recognised centre in the UK.

“However, things were very different during the global pandemic, and we were not able to deliver the outstanding levels of care that we aspire to. In line with national guidance, we had to make a number of changes to protect the most vulnerable, which included many of the patients in the NSIC.

“We also had to restrict visiting. Patients were permitted two named visitors for the duration of their admission and visitors were allocated specific time slots to ensure all inpatients had an equal opportunity to spend valuable time with their loved ones, particularly at times of celebration, such as Christmas and New Year.  

“We appreciate that this was an extremely difficult time for patients and are pleased we are no longer operating under the same restrictions.”

A spokesperson for the South East London Integrated Care Board, said: “We would like to express our deepest sympathy for Tom’s family at this very sad and difficult time. We cannot comment publicly on the details of individual cases, but we have been in contact with Tom’s family and their representatives, and are working with our partners to establish exactly what has happened and to find a resolution.”

As told to Miranda Levy


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