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UK: MS sufferer faces huge bill
Mike Waites Yorkshire Post
Monday 10 Jul 2006 MS sufferer faces huge bill NHS will not fund spray refused licence A GRANDMOTHER suffering from multiple sclerosis faces forking out more than £2,000 a year for a painkilling cannabis-based drug after NHS chiefs refused to fund it. Sheila Clarke, 63, of Sleights, near Whitby, has enjoyed her best nights of rest for years since she began using the spray in February. She decided to pay for the drug herself to see if it helped her overcome excruciating night-time cramps which mean at times she cannot sleep. But when she applied for the NHS to fund the treatment, which costs £5 a day, officials refused – despite its availability in other parts of the country. Mrs Clarke, who uses crutches to get about, said she initially decided to pay for the drug called Sativex because she did not want to burden the NHS with the cost if it did not work. Her GP had agreed to privately prescribe the treatment, which is imported under a special licence from Canada, and she immediately noticed it eased the pain she suffers at night from multiple sclerosis which she contracted 23 years ago. Her improved sleeping pattern had left her feeling happier and enhanced the quality of her life significantly, giving her the energy to get out to visit friends. She said: "It's led to a big reduction in pain. "Before it wasn't a life, it was more of an existence. Now everybody I know says I'm so much better. I move a lot better and am a lot happier and more relaxed. "It just doesn't seem right that some people are having it funded by the NHS and others aren't." Her MP Robert Goodwill said he was taking up the issue with Ministers. "In other parts of the country people are getting this drug – it's clearly a postcode lottery," he said. "Mrs Clarke has paid tax all her life and never been a burden on the state and expected the best possible care on the NHS if that time came but now that time has come, she's not getting it." A spokesman for the Multiple Sclerosis Society said some people were receiving it on the NHS, others were paying for it privately and another group was being denied it altogether as some doctors had been advised not to prescribe it. "It's clearly an unsatisfactory state of affairs. We have said for some time with the evidence available that cannabis-derived drugs ought to be available to people with symptoms of pain and spasticity for which other treatments have not worked," he said. "Different rules apply depending on where you live and it's not the first time there has been a postcode lottery for MS patients." The treatment contains two chemicals found in cannabis. It has been refused a licence by the regulatory authorities in Britain which say its manufacturer has failed to prove its efficacy or that its risks outweighed its benefits. Side effects are known to include dizziness, drowsiness, fatigue and confusion. Last year the Home Office gave it an import licence allowing it to be used by named patients. About 500 are believed to be taking it nationwide. Its manufacturers are expected to apply again for a licence. A spokesman for Scarborough, Whitby and Ryedale Primary Care Trust (PCT) said it did not support the use of Sativex following advice by the Committee on Safety of Medicines and the Medicines Commission which have both ruled against its availability. "Each PCT must make its own decision based on the evidence provided; our position is reflected the stance of the Committee on Safety of Medicines and the Medicines Commission," he added. mike.waites@ypn.co.uk http://www.yorkshiretoday.co.uk/ViewArticle2.aspx?SectionID=55&ArticleID=1617995
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