Ben Harcourt-Sharpe will never forget a school trip to the seaside when he was seven. As the other children played on the sand, Ben, who has diplegia, a form of cerebral palsy which causes constant tightness and stiffness in the muscles, sat with a teaching assistant on a sweltering bus because staff couldn’t get his wheelchair down to the beach.
‘Being excluded from doing things other children took for granted was just a normal part of life for me,’ says Ben, now 14.
He felt his future was mapped out for him: ‘I thought I would never be able to dress myself or go anywhere on my own and never have any kind of independent life.’
Saviour: John Goodden, a consultant neurologist from Leeds, has a special interest in a complex surgical procedures proven to help children with cerebral palsy
It’s a heart-rending scenario facing many children with cerebral palsy.
‘I always had to have an adult beside me to make sure I didn’t fall over,’ says Ben. ‘But no one wants to be friends with the kid who always has a teacher with him. When I approached a group of friends in the playground, they’d scatter.’
The day he met John Goodden, a consultant neurologist from Leeds with a cheery can-do attitude and a special interest in a complex surgical procedure proven to help children with cerebral palsy, Ben says his life ‘changed for ever’.
From spending most of his time in a wheelchair, Ben — who lives in Spalding, Lincolnshire — is now able to walk with sticks.
‘I can stand up straight where before I was all bent and hunched over. And I can go out with my friends instead of relying on my mum to do everything for me.’
Ben is in top sets for everything at his secondary school, and has set his sights on Oxford or Cambridge. ‘Without Mr Goodden and his team, I wouldn’t have those dreams,’ he says.
At 5ft 6in, Ben has reached a height he’d never have achieved without selective dorsal rhizotomy (SDR) surgery.
Proud: Dr Goodden has been nominated by the Harcourt Shars – Ben, Joanne, Rob and Eleanor
‘When I went back to see Mr Goodden this month for my five-year review, I was able to look him in the eye,’ he says proudly. ‘He told me I’m one of the reasons he carries on; he was so happy to see the difference it’s made to my life.’
Mr Goodden, 45, became the first British doctor to bring this new surgical technique for cerebral palsy to the UK in 2010.
SDR involves removing tiny nerves in the spine that cause tight, stiff muscles — allowing children reliant on wheelchairs and frames to walk.
Although this highly skilled procedure has been performed in the U.S. since the Nineties, it’s not been routinely available on the NHS, so hundreds of British families have taken their children abroad to have the life-changing treatment, at a cost of around £30,000. Desperate to help his patients, in 2010 Mr Goodden travelled to St Louis Children’s Hospital in Missouri — at his own expense — to train in the technique.
Under a special agreement with Leeds Children’s Hospital, he’s since operated successfully on 93 children during his NHS working hours, with parents raising the £14,500 cost of a high dependency bed and intensive physiotherapy.
But this means that many children whose parents can’t raise the money have missed out.
So on top of his full operating and clinic schedule, any spare time Mr Goodden has — when he’s not using his days off to check on his patients — has been spent working tirelessly, collecting and analysing a huge amount of data from the five centres where the operation has been performed since 2016, to prove the procedure is cost-effective to the NHS.
His dedication has now paid off as, based on these findings, NHS England has just announced that SDR will be available for children aged between three and nine at hospitals in Leeds, London, Liverpool, Bristol and Nottingham. Many of the 30,000 children in the UK with cerebral palsy could now benefit from Mr Goodden’s efforts.
‘Being excluded from doing things other children took for granted was just a normal part of life for me,’ says Ben, now 14
Cerebral palsy is caused by a bleed in the brain or lack of oxygen during pregnancy or birth, resulting in muscles that are constantly, and often painfully, contracted.
SDR involves locating and cutting the tiny strands of sensory nerves causing the muscles to contract. But these nerves are just millimetres from motor nerves which control movement and which, even under a microscope, look identical. For the operation to be a success, enough of the sensory nerve needs to be cut to release the muscle; but cut too much, or accidentally cut the motor nerve, and a child will be paralysed.
‘I spend hours before a complex operation checking different surgical approaches, reading and re-reading textbooks and scientific papers to make sure my approach is the best one possible,’ says Mr Goodden.
‘Parents are trusting me to do a huge operation that should change their child’s life for the better, but which carries huge risks. Every time I operate I’m conscious that one small error on my part could result in their child being paralysed permanently.’
Mr Goodden, who insists his patients call him John, has two daughters, Anna, 17, and Bethany, 15.
He says: ‘I say to each and every parent: “I know how precious my girls are to me. So I have a very good idea how precious your child is to you. I promise I will treat them as if they were my own.” ’
The joy for him at the end of every four-hour SDR operation is ‘rolling’ the child off the operating table on to the bed ‘and their stiff legs move freely for the first time in their lives’.
‘It makes me grin inanely every single time,’ he chuckles. ‘When I see the improvement surgery makes to children’s lives, any stress I feel just fades away.’
A party is planned for all the children and their families when he reaches 100 SDR operations later this year.
‘It’s just such a pleasure seeing each one of them and watching their personalities grow and flourish,’ he says.
Ben, who was nine when he had his surgery, was one of Mr Goodden’s first patients (his local authority agreed to pay for it just before NHS England said it couldn’t be funded routinely). His mum, Joanne, a human resources administrator, and dad, Rob, 44, who works for a tyre company, first noticed a problem when Ben was eight months old. ‘His hands had started to turn in like claws and his legs were so stiff he couldn’t straighten them,’ says Joanne.
‘He got his first walking frame when he was three, but could only walk short distances by throwing each leg out stiffly to the side.’
The family moved to a bungalow because Ben couldn’t cope with stairs. ‘It broke my heart to think about the future because I could not imagine him ever living independently,’ says Joanne.
‘Mr Goodden has completely changed all our lives. Without the surgery, Ben’s life would have been pretty miserable.’
The surgery has even meant that Joanne has been able to return to work.
But aside from his considerable surgical skills, it is Mr Goodden’s love for his patients which sets him apart, says Ben.
‘He’s stayed in touch with every single child he’s ever treated. If you asked him who was his 64th SDR operation, he could tell you their name, age and level of spasticity.
‘When Mr Goodden looked at me, he didn’t see all the things I couldn’t do, like everyone else did,’ says Ben. ‘That meant a lot. I think his belief in me was as life-changing as the surgery.’
The kindness shows in small ways, too. After his operation in March 2014, Ben had to stay in hospital for six weeks — a strain for the family, because while Joanne stayed with Ben, his dad Rob and younger sister, Eleanor, then five, were at home 120 miles away.
‘We were desperate to have some time as a family,’ says Joanne. ‘Mr Goodden let us take Ben to our in-laws outside Leeds for a few days and phoned us regularly to check on us while we were there. His involvement with us as a family was just incredible.’
When Tracey Edward’s son Shane, 12, was diagnosed with an aggressive malignant brain tumour in 2012, Mr Goodden was his surgeon.
‘When the cancer returned two years later, Shane was under a different care team but John told him he’d do everything in his power to help him, says Tracey, from Bradford.
‘John came to visit him at home because Shane wanted to see him. He sat for an hour telling him he was in good hands, which made Shane feel so at ease.’
Mr Goodden’s adult patients love him just as much. He operated on Michelle Porter, 50, in 2015 to remove a slow-growing brain tumour.
‘I was very ill afterwards with a stroke and two heart attacks,’ says Michelle, who worked in the freight industry before her diagnosis.
‘I’ll never forget this man. I love his down-to-earth manner and his kindness. When I told him I wouldn’t have radiotherapy because I didn’t want to lose my hair, he said if he had to take me there himself, he would!
‘He even visited me on Christmas Eve when his daughter was in a school play.’
Dr Asim Sheikh, a senior registrar on Mr Goodden’s team, describes him as a ‘perfectionist’, both technically and when it comes to relationships with his patients.
‘If he’s counselling parents and they need three hours to fully understand what is happening to their child, then he spends three hours with them,’ says Dr Sheikh.
‘If it means explaining things ten times because they’re too distraught to take anything in, he’ll explain things ten times.
‘He often comes in his spare time at evenings or weekends to check on patients.
‘You couldn’t hope for anyone better to look after your child.’
It is that beyond-the-call-of-duty dedication to his patients that has led Joanne to nominate Mr Goodden for a Daily Mail Health Hero award.
He was training to be a GP when he did a stint in neurosurgery and felt a ‘wow’ moment.
Mr Goodden’s mother Rosemary was a nurse. His father Robert, an entomologist, ran a butterfly attraction and silk farm from their home near Sherborne, Dorset (it produced the silk for Princess Diana’s wedding dress and veil).
‘I grew up helping in my parents’ business,’ he says. ‘I often talk about butterflies with my patients. People think that if you touch a butterfly’s wings, it can never fly again. But it’s not true. As long as you pick it up firmly and gently, holding its wings in the right way, it will live to fly another day.
‘And that’s also true of the brain and spinal cord. If you respect them and know how to do things properly, you can get away with a great deal.’
Mr Goodden, who has been married to his wife Heidi, 45, a full-time mum, for 20 years, waves away any praise for himself.
‘Several other British surgeons went to train [in SDR] after me, I just managed to get through the red tape first,’ he says modestly.
But he could not be more proud of his young patients. ‘I feel privileged to have the chance to help people and I wouldn’t change a moment of it.’
A&E DOCTOR WHO PUT HIS OWN HEARTBREAK TO GOOD USE…
Despite his gruelling work as an A&E consultant and even in the most testing of circumstances, Dr Ben Jordan is always ready with a smile and kind word. He is often the last to leave at the end of a shift, staying behind to make sure his patients are comfortable.
His dedication to his work doesn’t end at the door, as he spends what little spare time he has on his other passion: raising money to improve the hospital he loves. In the past three years alone, he’s helped pull in £80,000.
The inspiration is his older brother, Dr Guy Jordan, his colleague at Frenchay NHS Hospital in Bristol, where Guy worked as a consultant in anaesthesia and intensive care — and where he was taken after a terrible accident.
Ben Jordan, consultant at Southmead Hospital, pictured with Ken Pattinson
Five years ago, Guy was knocked off his bicycle and went under the wheels of an oil tanker.
More than 100 medical staff — all friends and colleagues of Guy and Ben — battled for 17 hours to save him before he died, aged 41.
Ben was at his brother’s side when he passed away and describes it as ‘the worst experience of my life — both surreal and devastating’.
Determined some good must come of it, Ben set up the Guy Jordan Memorial Fund in May 2015.
As well as running the London Marathon and walking 700 miles along the South West Coast Path with colleagues and former patients, he has taken part in a Tough Mudder challenge — a gruelling ten-mile obstacle course — and helped organise a charity ball and an 874-mile charity bike ride from Land’s End to John o’ Groats.
‘I miss him every day,’ says Ben, a father of two. ‘Fundraising is important to help ensure he is not forgotten, and seeing the good that flows from it helps keep life positive.’
Ben and Guy, from Bristol, became work colleagues when Ben joined Frenchay Hospital in April 2013; Guy, five years his senior, had been working there since 2007.
‘Guy was a great sounding board and a sensitive doctor who always put his patients first,’ says Ben.
On the day of his accident, Guy was cycling with three friends — all consultants from Frenchay — when an oil tanker overtook him on a country lane. Ben was teaching a life-support course when a colleague called to say there had been an accident. At 2.30am the next day, the family — Ben [as a relative, he was not permitted to take part in his brother’s care] and parents Ann, 80, and Don, 84 — were told Guy couldn’t be saved.
‘I held his hand as I said goodbye,’ Ben recalls.
He decided to start raising money in Guy’s name.
The focus of the charity — which is part of the larger Southmead Hospital Charity, the hospital where Ben now works and where Guy was due to transfer — is on improving the hospital environment.
S o far it’s helped pay for a new room for relatives, with colourful sofas and tea and coffee facilities. ‘My experience fed into my desire to make this environment better for when relatives are receiving the worst news of their lives,’ says Ben.
In the paediatric area there’s a new cartoon mural, new interactive toys, a sensory room and special soft-play zone aimed at children with learning difficulties to help calm them. For patients with dementia, there are pictures of local historical events on the walls and easy-to-read clocks. ‘Research has shown this helps them feel more at ease,’ says Ben.
The charity is also working with the intensive care unit to fund an outdoor space where longer-term patients can be taken on a ventilator to experience, as Ben puts it, ‘fresh air, sunlight and hope’.
Then there is the 20ft long art installation designed to highlight the need for organ donation; Guy’s own eyes were used to help restore the sight of five people. It hangs in the atrium of Southmead Hospital and comprises an embroidered tree made up of quotes from relatives of patients who have become organ donors and from the recipients.
Among them is an inscription from the family of Ken Pattison, 70, a retired education officer from Bristol whose wife of 42 years, Jo, died of a brain haemorrhage in October 2013, aged 65. Her kidneys, liver and corneas were donated.
It is Ken who has nominated Ben for the Daily Mail’s Health Hero Award.
He explains: ‘I am in awe of the way Ben has used such sad circumstances to create so much good, and I am grateful to him for helping keep Jo’s memory alive and raising awareness of a subject she felt strongly about.’
Juliette Hughes, lead nurse in A&E and Ben’s colleague, says Ben is a ‘complete star’. ‘He is so kind to patients and goes out of his way to help junior doctors,’ she says. ‘His fundraising has made our hospital a better place. Through Ben’s work, a little bit of Guy lives on.’
Ben says modestly that he is simply ‘a figurehead for a lot of hard work by people who were also incredibly close to Guy. Raising money in his name seemed a natural thing to do.’
Southmead Hospital Charity is one of 250 charities across the UK that support NHS hospitals, community and ambulance services. To support them, go to nhsbig7tea.co.uk