'Cannabis gives me my life back'

Barry Nelson meets one North-East MS sufferer who's already made up her mind.

PAULINE Taylor became something of a media celebrity four years ago after she appeared in The Northern Echo. The story of how the former nurse was reduced to sending her then 17-year-old daughter out on the streets of Durham to buy illegal cannabis to control her pain, was shocking.

Pauline's face soon stared out of newspapers and magazines all over Britain and Germany, not to mention a slot on Tyne Tees Television's evening news and an inquiry from chatshow hosts Richard and Judy.

Most people would probably have shaken their heads at the absurdity of Pauline having to break the law to get the relief she needs. But four years on, and close to the publication of the results of the world's biggest clinical trial involving cannabis, Pauline is still waiting to buy the drug legally.

"That was 1999 and here I am still relying on illegal supplies," says Pauline, who spends between £100 and £120 a month buying enough cannabis to cope with the pain from her progressively disabling disease.

Even though MPs voted last week to downgrade cannabis from a class B to a class C drug, a Home Office spokesman has stressed that possession remains a criminal offence.

Like many of the estimated 10,000 chronically-ill people in the UK who use cannabis to ease their symptoms, Pauline was elated when the Medical Research Council announced it would go ahead with cannabis trials in December 1999.

It approved a £950,000 grant for a study by a consultant neurologist based at Derriford Hospital in Plymouth.

Dr John Zajiceck, who is due to report back shortly, recruited 600 patients with MS with significant spasticity in some of their leg muscles to try out whether capsules containing cannabis extract, tetrahydrocannabinol (a constituent of cannabis) or a blank placebo (containing only vegetable oil).

But it has taken a long time to get from the announcement of the trial to a licensed drug, particularly when the supplies, usually from Amsterdam, dry up because of police raids.

Pauline, who didn't take part in the trial, says: "Sometimes the supplies suddenly stop because there has been a big police bust. You would be amazed at how that affects people like me. You can guarantee that in amongst the cocaine and heroin there will be a huge amount of cannabis."

When the supplies run out, the effects are traumatic for this 51-year-old former palliative care nurse, who lives in Durham City.

"When I can't get any supplies it is horrific. It is like electrical shocks going up and down my legs and up into my back. I feel as though my legs and feet are on fire... like continual sunburn with varying degrees of intensity," she says.

Apart from immobilising her and preventing her from doing her voluntary work as a bereavement counsellor, it has a more depressing effect. "It affects me dreadfully mentally," she says.

Pauline's daughter Amyria who plans to study alternative medicine in New Zealand next year, partly because of her experiences at home, has seen how cannabis deprivation effects her mother.

"It's not really my mother any more, the pain takes her over," she says. "Because she is concentrating on dealing with pain she can't deal with anything else."

Even when her mother has a regular supply, Amyria, 21, worries about the quality of cannabis coming down the illegal supply chain. "The stuff that my mother gets off the street is not necessarily pure, it is a terrible situation to be in," she says.

Pauline says: "Usually it is good stuff, but I have definitely been sold seeds in the past and sometimes I can tell there are traces of other drugs because of my reactions."

The slow progress of the MRC trial is bad enough, but Pauline is furious at the Government's decision to ask the National Institute of Clinical Excellence (Nice) to look at a new cannabis-based under-the-tongue spray before it can be made available on the NHS.

Calling in the cannabis spray for an appraisal by experts is expected to delay its availability on prescription, assuming it is licensed early next year.

It is understood that a trial involving about 400 MS patients showed that it was useful in reducing nerve damage pain and sleep disturbance.

"The company that makes this new spray are going for licensing and we were told that it should be licensed by the end of this year, but Nice have stepped in and we are now looking at more delays," says Pauline, who says the intervention of Nice is like a re-run of the watchdog body's role in appraising the drug beta interferon for MS sufferers a few years ago.

At the time, Nice was criticised for holding up the drug which is now widely available on the NHS.

Nice says it has been asked to look at the new spray because it is the first of what is expected to be a whole new generation of cannabis-based drugs. The Nice verdict on whether the drug would be suitable for the NHS is expected next June.

GW Pharmaceuticals, which makes the cannabis spray, has said it hopes a licence will be granted within months.

But Pauline says: "It seems to me that the delays are more about the politics of medicine than anything else. Surely if this works you should be able to get it on the NHS."

While she uses other prescribed drugs to try to control the symptoms of MS, Pauline finds that it is only by smoking daily cannabis "joints" that she can have any quality of life.

"The cannabis controls my pain, my spasms, my joint pain and clears my foggy head. It gives me my life back," says Pauline, who finds it ironic that she could be jailed for buying a soft drug with few side-effects, yet when she was working as a cancer nurse she was giving a hard addictive drug like morphine to ease the suffering of dying patients.

"There is not a single orthodox drug the GP can give me that will do what cannabis can do for me," she says.

If cannabis is finally recognised as an orthodox medicine it would allow MS sufferers to put away their cigarette papers and matches and find a healthier way to get their pain relief.

"There are many thousands of MS sufferers who are in extreme pain, who are having to take their cannabis in a way that is harmful," says Pauline.

She planned to give up smoking before she became ill with MS but those plans have been abandoned because of her need to smoke cannabis mixed with the specially selected "natural" tobacco she prefers.

"I have to mix it with tobacco because it would be far too strong if you smoked it on its own," she says.

Amyria also points out the hypocrisy of a society which turns a blind eye to the problems caused by alcohol but prohibits the open consumption of a relatively harmless drug.

Her mother says: "Cannabis has been used for thousands of years and costs nothing to grow. Even if we do eventually get expensive medicines based on cannabis, I wonder whether they will be as good as the real thing?"