Forced to buy cannabis on street to ease constant pain Woman’s rare muscle-wasting condition doesn’t qualify her for legal drug
JANET Bond lives each tortured day in agony from an extremely rare muscle-wasting condition that causes her toes to bend like claws.
Charcot Maria Tooth Disease has led to severe problems with her legs and back.
Janet, who is registered disabled, has lost count of the number of operations she has endured, but the procedures run into double figures.
She can walk only yards unaided, uses a wheelchair and has a chairlift in her Birmingham home.
Janet’s problems are compounded by the fact that every painkiller she has been given sparks a serious reaction, she claims. Twice, an ambulance has been called after medication caused crippling stomach pain.
“It’s like standing in front of a mountain,” she explains. “The pain starts at the bottom and gets worse with every step you climb up, until it’s unbearable.”
She believes that cannabis – only recently approved as a prescription drug – is her last hope: the only thing that will free her body from round-the-clock agony.
But the 58-year-old has been told her condition is not among those given the green light for medical marijuana treatment.
Janet, who moved to the Midlands from Leeds 13 years ago, candidly admits that she has taken matters into her own hands. She now buys cannabis from backstreet dealers.
The medical profession’s rules about the drug have driven her to criminality, Janet insists at the Kings Norton home she shares with husband Steve.
She has pleaded with the pain management team at Edgbaston’s Queen Elizabeth Hospital for cannabis – but their hands are tied.
Her MP, Richard Burden, has been understanding and supportive, but he faces a regulation roadblock.
The burden of law weighs heavy on Janet – and she winces from the pain of it.
“Why do I have to keep suffering?” she asks. “Do you know what it’s like to go without sleep for days? I feel as if no one wants to help me.”
Janet’s life was normal until she reached her early 20s, when a series of falls signalled something was wrong.
She was diagnosed with Charcot Marie Tooth Disease, a condition which attacks the nervous system and eats away at muscle tissue.
The delicate bones in her feet have been fused into one. A metal bar has been inserted in her right leg – “that was to stop me walking like a chicken”, Janet says – discs have been removed from the spine after her head lolled to one side and she has undergone a total knee replacement.
“I am in chronic pain throughout my body,” she says. “That’s why I went to pain management at the Queen Elizabeth Hospital. I am on crutches permanently and I have a wheelchair that can go in the car. From the front door to the car, that’s as far as I can walk.
“Whether I’ve taken paracetamol or opioids, the pain still comes. I believe they’ve permanently damaged my stomach.”
Husband Steve, aged 52, admits: “I’m disgusted with it. She is a person who cannot take any kind of normal pain relief – and the hospitals and GPs know that. Through the night I wake up and hear her yelp with the pain. She is actually yelping every single night.”
The Government’s hard-line approach to medical marijuana softened after 12-year-old Billy Caldwell, who suffers from a rare form of epilepsy, was granted an emergency licence to be treated with the drug by Northern Ireland’s department of health.
On November 1, the go-ahead was given for products containing cannabis, cannabis resin or cannabinol, to be made available on prescription.
But they can only be prescribed by consultant medical practitioners at hospitals, not GPs – and they are only available in a small number of cases.
Those cases include nausea caused by chemotherapy, multiple sclerosis, and for infants with severe epilepsy.
The guidelines clearly state can- nabis products should only be given “where there is a clinical need which cannot be met by a licensed medicine and where established treatment options have been exhausted”.
When the move was announced, Home Secretary and Bromsgrove MP Sajid Javid said: “Recent cases involving sick children made it clear to me that our position on cannabis-related medicinal products was not satisfactory.
“Following advice from two sets of independent advisers, I have taken the decision to reschedule cannabisderived medicinal products, meaning they will be available on prescription. This will help patients with an exceptional clinical need.”
But Mr Javid stressed it was “in no way a first step to the legalisation of cannabis for recreational use”.
The pool of those eligible for medical marijuana is small and exclusive. Janet Bond is not among them.
“They say it’s for special cases,” she says. “I’m in constant agony and can’t take painkillers. It seems that’s not special enough.”