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UK: Barrow: NHS Suffolk decision leaves MS sufferer living in pain
By Natalie Hoodless
East Anglian Daily Times
Monday 11 Apr 2011
NHS Suffolk says it is not convinced Sativex, a cannabis derivative that reduces pain and spasticity in Multiple Sclerosis (MS) patients, is safe but Dr William Notcutt refutes the trust's claims and argues it is simply not prepared to spend the money.
"This is all about cost," said Dr Notcutt, a consultant in pain management who is based at the James Paget University Hospital (JPUH) in Gorleston.
"I think it is appalling, I really do. I have been battling to get Sativex used but the primary care trust have not really given the green light for its widespread use."
Sativex was licensed for use in June last year and NHS Suffolk told the EADT that while their GPs would not be prescribing the drug, patients who were prescribed it by a specialist would be able to obtain it through the hospital.
However, MS patient Diana Hunt, of Barrow, near Bury St Edmunds, has been told by her neurologist that she still cannot have the drug because the health trust will not fund it.
Mrs Hunt, a former teacher who is now unable to walk as a result of the debilitating illness, said: “Originally we were told by the pharmacist that patients would be able to obtain the drug if specialists prescribed it and my neurologist is prepared to prescribe it but NHS Suffolk won’t pay for it.
"It doesn't make sense. They said they would pay for it one minute and then they said they wouldn't.
"I don't know anyone who has been able to get funding for it. My neurologist said the only way for me to get it is to pay for it myself.
"Even then, I would have to find someone who would oversee it and take responsibility."
Mrs Hunt explained the drug costs £11 per day, and she would have to pay for private medical fees on top of that.
She was diagnosed with MS in 1996 and now has the secondary progressive form of the debilitating illness.
"I am in constant pain, I wake up in the night with spasms and it is like having cramp all the time.
"It is not so bad during the day because you can think about other things but at night there is nothing to take your mind off it.
"This derivative of cannabis is sprayed under your tongue and is supposed to reduce the spasticity. It doesn't give you the hallucinations that street cannabis would. It could relieve some of my symptoms."
Mrs Hunt added: "I don't know if it will help me because I haven't tried it. I am not being given the chance to try it."
Defending the cost, Dr Notcutt explained the drug had been trialed for 10 years before being approved because of its cannabis content.
He added: "You can tell within two or three weeks if a patient will get benefits from it. It is almost impossible to tell if some drugs are working so it is easy to trial it for a patient."
Andrew Hassan, NHS Suffolk's medical director, said: “It is important that any new drugs are proven to be safe and effective. At present there is inadequate information to support the prescribing of Sativex as an effective treatment for symptoms of multiple sclerosis. Should new evidence emerge we will look again at prescribing guidelines for this drug."
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