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UK: Drug refused by NHS trust
Whitby Today
Tuesday 04 Jul 2006 A MULTIPLE Sclerosis sufferer from Sleights is fighting to get her local health trust to fund a cannabis-based treatment that has transformed her life. Sheila Clarke of Ingham Close, Sleights, has been suffering from MS for 23 years. The condition affects her mobility and causes painful cramps and sleepless nights. But around a year ago Mrs Clarke read on an MS website that a cannabis derivative called Sativex had been licensed in Canada and although it was not licensed in the UK doctors were allowed to prescribe it in exceptional circumstances. Mrs Clarke said her life has totally changed since she started taking the drug. But she cannot afford to keep on funding it herself and although it is up to individual primary care trusts whether they fund the drug, Whitby, Scarborough and Ryedale PCT has refused to help her. Mrs Clarke said: "I am terrified at the thought of being without it." She said taking the drug four times a day plus once at night has reduced the pain she sufferers by around 75%. "I sleep at night. I have got greatly reduced pain and cramp. I am just a completely different person." But the PCT says it will not pay £5 a day for the treatment because Mrs Clarke initially chose to get the drug privately and because it is not licensed in the UK. "It is just a postcode lottery," said Mrs Clarke, who believes there are around 500 people getting the drug on the NHS throughout the country, but is too ill to consider moving herself. "We decided initially we would fund it because we did not know if it would work." She said it is not fair that she is refused any support when people suffering from self-inflicted problems such as drug abuse can get free medication from the NHS. "I intend to fight it until somebody somewhere funds it. "If one of the people on the decision panel at the PCT had MS I can assure you they would not refuse to fund it." Whitby MP Robert Goodwill told the Whitby Gazette that he fears sufferers in the area may turn to smoking the drug illegally if this alternative drug is not made available to them. "I am extremely disappointed that the health service does not seem to be able to give these treatments that GPs want. "The PCT is saying it won't fund it but don't forget they are blowing money on night-time cover for GPs. "The fact is Mrs Clarke has been paying out of her own money to start using this and this has been held against her. "A lot of people suffering from MS are actually smoking cannabis and it's almost condoning people going out and buying it from a drug dealer." Mrs Clarke said she would not consider smoking cannabis but believes Sativex is safe as it contains the effective part of the plant and not the hallucinogenic part. A spokesman for the Scarborough, Whitby and Ryedale Primary Care Trust said: "The PCT does not support the use of Sativex following advice given by the Committee on Safety of Medicines and the findings of the Medicines Committee. "In December 2004 the advice given by the Committee on Safety of Medicines to the Medicines and Healthcare Products Regulatory Agency was to not grant a licence for Sativex in the UK. "The company producing the drug appealed in May last year but this was turned down by the Medicines Commission."
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