Viewers of BBC Two’s popular show Hospital were left outraged after the NHS refused to fund surgery for a wheelchair-bound teenager.
The 15-year-old – known only as Thomas – has quadriplegic spastic cerebral palsy but does not fit the strict criteria for the life-changing operation selective dorsal rhizotomy (SDR), which helps relieve muscle stiffness in a sufferer’s legs.
Thomas’ condition has robbed him of the ability to stand and causes him to endure such painful cramps he can barely sleep.
His parents, Helen and Neville, were forced to fundraise £29,000 for their son to have SDR at Alder Hey Hospital, Liverpool, and to pay for his physiotherapy.
Since going under the knife, Thomas is finally able to stand and feed himself.
BBC Two Hospital revealed the story of 15-year-old Thomas (pictured), who is unable to stand due to his cerebral palsy. He falls short of the funding criteria to have a spinal op – selective dorsal rhizotomy – on the NHS, despite the procedure having the potential to change his life
Thomas’ mother, Helen (pictured), read a poignant poem called ‘Welcome to Holland’ on last night’s episode, which describes what it is like to raise a disabled child
The programme explained how the NHS only funds the operation for children between the ages of three and nine who have some ability to walk.
According to Great Ormond Street hospital, ‘children suitable for SDR need to demonstrate adequate muscle strength in the legs and trunk.
‘They are usually able to stand up and support their body, hold their posture against gravity and make appropriate movements to crawl or walk.’
WHAT IS QUADRIPLEGIC SPASTIC CEREBRAL PALSY?
Quadriplegic spastic cerebral palsy is the most severe form of the condition and causes sufferers to not be able to use their legs, arms and bodies.
Cerebral palsy is a neurological disorder that affects a patient’s movement, motor skills and muscle tone.
It affects around one in 400 children born in the UK to some extent.
In the US, approximately 8,000-to-10,000 infants are born with the condition each year.
Quadriplegic spastic cerebral palsy is generally caused by brain damage before, during or shortly after birth.
This may be due to infections, toxin exposure or medical negligence.
- Muscles that rapidly contract and release
- Joints that cannot stretch or move
- Muscle tightness and tremors
- Speech impediments
- An inability to walk
- Cognitive issues
Sufferers may develop limb and foot deformities, as well as curvature of the spine.
Swallowing and respiratory difficulties can also occur.
Treatment includes medication and physical, occupational, and speech therapy.
Surgery may also be necessary.
Source: Cerebral Palsy Guidance
The surgery involves opening a patient’s spinal canal and ‘subdividing sensory nerve roots’ that cause spasticity in the legs.
Thomas’ neurologist recommended the teen have the operation, his parents wrote on his JustGiving page.
Research has shown the procedure is most beneficial to younger children, but lead SDR surgeons are gathering data to demonstrate it can also help older patients.
Alder Hey Hospital is one of only five centres in the UK to perform SDR.
‘There is a spectrum for spasticity that goes from 1-to-5,’ Thomas told viewers.
‘Unfortunately 4s and 5s aren’t capable of having it [SDR] funded for them because they are too tight and they wouldn’t be able to walk.
‘So the NHS sort of says, “whats the point in funding it for them?”
‘It makes me feel happy for the people who have SDR, but at the same time, angry because I am like, why aren’t you realising if we are higher on the spectrum [of spasticity] we are having more pain?’
Viewers were equally outraged and took to Twitter to express their rage.
One said: ‘Tell me how on earth the NHS cant fund this when it wastes billions on drug addicts, smokers,… the list goes on! They get priority over young lads like this!! DISGRACE [sic].’
Another added: ‘Kid is in pain but no funding for his operation. What?’
Thomas’ mother said: ‘I would just really like the opportunity to take the pain, it is not nice seeing your son with pain.’
She went on to read a poem, by Emily Perl Kingsley, that has helped her and her husband through hard times.
As her voice breaks, Neville takes over.
Viewers were left outraged that the NHS can’t fund a life-changing operation for Thomas
One Twitter user believes it a disgrace that drug addicts get ‘priority’ over children like Thomas
Thomas’ life is controlled by the condition, waking up four to five times a night in pain
The operation has only been available on the NHS for eight years and is only funded for children with a certain criteria, leaving viewers shocked
Viewers shared their disbelief at the lack of funding for Thomas, who is studying for his GCSEs
Thomas revealed he is too high on a spectrum of spasticity, meaning the NHS ‘don’t see the point’ in giving him the surgery
Alder Hey Hospital, Liverpool, is one of only five centres in the country to offer SDR, and is where Thomas received his operation
In emotional scenes, his mother said it wasn’t nice to see her son in pain
Determined to have the operation, Thomas was forced to find the money himself – £16,000 for the operation and a further £9,000 for physiotherapy.
Physio is required for at least two years after the surgery to strengthen the teen’s muscles.
To his family’s amazement, Thomas was able to raise £29,000 in just four months in between studying for his GCSEs, which he is taking at a mainstream school.
Neville expected it to take two to three years.
The programme shows Thomas finally undergoing SDR.
And, in moving scenes, the teenager is shown standing – something he has not done since he was 11 years old – while counting to a minute.
‘Everything has improved,’ Neville said.
‘Since Thomas had the operation he’s got better at doing little things such as taking drinks and eating food.
‘The other night we were just watching telly and he was feeding himself with a cone of chips and that’s something he’s never done before.’
Thomas was born nine weeks premature by emergency C-section and was immediately rushed to intensive are.
He spent the first 23 hours of his life on ventilation while he battled a collapsed lung and had his chest drained five times.
The youngster was diagnosed with cerebral palsy at nine months old.
‘WELCOME TO HOLLAND’: THE POEM ABOUT WHAT IT IS LIKE TO RAISE A DISABLED CHILD
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ‘Welcome to Holland.’
‘Holland?!?’ you say. ‘What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.
But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.
And for the rest of your life, you will say ‘Yes, that’s where I was supposed to go. That’s what I had planned.’
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
By the American author Emily Perl Kingsley, 1987