Highbury student’s struggle to convince medics she’s in severe pain
Town Hall leader backs campaign to raise awareness of complex regional pain syndrome
31 August, 2018 — By Samantha Booth
Helena Stone at home
A STUDENT who lives with debilitating pain says medics have told her it is “all in her head”, despite being previously being diagnosed with a rare condition.
Helena Stone, from Highbury, is now campaigning for better healthcare for sufferers of complex regional pain syndrome (CRPS) after several experiences where doctors and nurses did not believe her.
She was diagnosed with the chronic condition after a minor knee sprain five years ago. It now affects her legs and an arm.
The unbearable pain – described as worse than childbirth – has become so crippling at times she has considered paying for private healthcare to have her right leg amputated.
Ms Stone, who is going into her second year at university in Gloucestershire, told the Tribune: “It would be so much easier if I could go to A&E or the GP and not have to sit and justify or explain CRPS.
“It’s not very nice. I start wondering whether I am going mad. I question it, then I look at my arms and legs and know it cannot be psychological. I dread going to hospital now.”
She has launched a petition to get the new health secretary Matt Hancock to bring about “basic” changes.
The cause of CRPS is unknown, but it is thought to be triggered by an injury. Many people affected suffer from anxiety and depression because of the intense pain. Ms Stone, of Calabria Road, said it took more than a year to be diagnosed after she was hurt when a kayak capsized in 2013. Last year, it spread to her other leg after falling on snow and then to her left arm after getting a blister on her hand.
Helena in hospital
She has had to learn to walk again several times after becoming bed-bound with her condition.
“It’s like having barbed wire being pulled around your legs constantly,” she said. “Everyone else was having a gap year or were in their first year of university and I was sat in my wheelchair.
“That’s when we made the decision to put lifts in the house and a wet room. We know it is going to be a long-term thing.”
After lack of awareness of the condition was raised in a parliamentary debate this summer, she launched her petition, which has nearly 1,000 signatures.
She wants the government to improve health practitioners’ awareness of chronic pain and to make CRPS a recognised chronic condition with a treatment pathway.
She also wants a tick box to be created on NHS systems, which means all CRPS patients can be logged, to create a true picture of how many people are diagnosed. This would enable specialist centres to access funding, she said.
On the NHS website, it states: “It used to be thought that CRPS was a psychosomatic condition (the symptoms were ‘all in the mind’) but research has disproved this.”
Islington Council leader Councillor Richard Watts said: “I’d encourage people to sign the petition to send the government a clear message that these simple changes Helena is calling for should be made now.”
A spokeswoman for the Department of Health and Social Care said that, while there were no formal reviews at the moment, the minister for care would “continue to look into ways to improve care for those affected”.
To view Ms Stone’s petition, go to https://bit.ly/2LCSSp5