Death of a campaigner - Paul Flynn - Read My Day

Clare Hodges has died. She was a splendid campaigner and sent me this moving letter in 1997. Her real name was Elisabeth Brice. She campaigned under the assumed name to avoid prosecution.

She was powerfully persuasive and energetic in spite of the crippling pain of her MS.? Among the other activities of this former TV producer was a translation of Noddy books into Latin.

Thanks to her campaigning Sativax is available. It is not natural cannabis but has gone some way to allow cannabinoids to be ingested legally. On one of her visits to the House of Commons Clare brewed her own tea on the Terrace. The staff were puzzled by the little green leaves that were left in her cup.

Her eloquent appeal persuaded the Townswomen's Guild and the Belgium Parliament to back her campaign.

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This was Elizabeth"s message ?:

"I discovered I had Multiple Sclerosis ago when I was 25 years old. For several years I was only mildly affected, I carried on working, married and had two children. But slowly my condition became worse, so that now I am constantly uncomfortable and tired; I am visually impaired and cannot sleep, eat or move very well. In some ways it's like having permanent jetlag.

The medicines prescribed only gave limited relief and often unacceptable side effects. Over the years I've been given steroids, tranquillisers, pain killers, muscle relaxants and antidepressants. At best they only helped in the short term, and many have intolerable side-effects. My main problem, however, was that, my bladder was in constant spasm, but no prescribed medicines helped me.

Multiple Sclerosis (or MS) is a cruel disease. You develop it when you're young and healthy, and slowly but surely you lose all your faculties, abilities and functions. Nowadays you can expect to live your full life span often until you are completely dependent. And of course this is a very depressing prospect. I began to get gloomy and introspective as all the future seemed to hold was deteriorating health and no medicines that really helped.

But in 1992 I read n an American journal about how some doctors had observed cannabis can help people with MS. As I am a middle class mother of two young children I had a bit of a problem obtaining cannabis. It was sometimes quite embarrassing asking people, but eventually I found someone who helped me and showed me how to use it.

When I did try cannabis, the physical relief was almost immediate. The tension in my spine and bladder was eased, and I slept well. I was comfortable with my body for the first time in years. But, just as important, I felt happy that there was something, after all, that could help me. It was as if a huge weight had been lifted from me.

I've been using cannabis now for nine years. There is no doubt that my condition had improved in different ways, I do not have to take as many prescribed medicines. I now eat better, sleep better, and I feel more positive and motivated. Ad my health is more stable I find I can now do simple things that I hadn't been able to do, like go to the shops, or cook my children's dinner after school.

Through trial and error I have now established a routine that helps me. I take 9 grams of herbal cannabis per week, drinking it in tea during the day and smoking it at night before I go to bed. I do not smoke it with tobacco but with dried herbs. I've found smoking is the best way of taking it to treat my disease as it is much easier to regulate the dose.

The neurologist I see was very much impressed by how much better I was, he put me in touch with two other patients with MS who also used cannabis. When we found out cannabis in tincture form was available on medical prescription in Britain until 1973, we decided to start campaigning to have it restored as a legal medicine. The campaign is called the Alliance for Cannabis Therapeutics or ACT. It's run entirely by patients, and we finance it ourselves. It has involved an enormous amount of work, dealing with thousands of letters from patients, doctors and politicians. We were very involved in the British Medical Association report, were interviewed by the House of Lords select committee, and by two Ministers of Health. We also helped a pharmaceutical company, GW Pharmaceuticals, obtain a licence to grow cannabis for medical research, and clinical trials are now planned.

Judging from the large correspondence over the years and from widespread reporting in the press, it reasonable to conclude there are thousands of medical users in Britain. Many patients say cannabis helps them because it not only eases their physical problems, but also improves their mood. Like all diseases, MS affects you both physically and psychologically, and cannabis is the only medicine we've come across which treats the whole condition. This is why many of us feel the research to develop a version of cannabis without the psychoactive effects fundamentally mis-understand how it helps us.

The campaign in Britain has now been active for 8 years, and has been very successful. When we started in Britain cannabis was considered as little more than recreational drug, and now, although there is very little new scientific research, it is considered a useful medicine. However, we patients are in exactly the same position as we were 8 years ago. We still have to break the law to get the medicine we need.

In a way the situation is almost farcical. While authorities debate earnestly rights and wrongs of medical use of cannabis, patients simply carry on taking it. While government-controlled cannabis is grown for medical research, secretly and with tight security, patients simply carry on growing their own at home. And, worst of all, seriously ill people are regularly taking to court for growing cannabis and regularly acquitted by juries the only thing these trials do is to bring the law into disrepute and cause great distress to ill people. Next week I will be giving evidence at a crown court trial of a woman with MS who grew cannabis at home to treat her condition.

So what can be done to escape from this impasse? Both the House of Lords and the Townswomen's Guilds have recommended that we should have more research, but that patients should have more research, but that patients should have legal access to cannabis while research is proceeding. What our patients' campaign suggests as an immediate, simple solution is that any patient who has authorisation from their doctors be allowed to grow up to six plants at home. Very similar legislation to this has recently been passed in Hawaii so there is now a clear example to follow. The next step would be to move it to schedule 2, so doctors can prescribe it on a named patient basis.

To conclude, as time goes on, I am becoming more and more disabled, and more frustrated that there's such reluctance to help me and others like me. It's been a big effort for me to come to speak here, but I very much wanted to outline the problem to people who I hope will not just call for me research, but will have the confidence to actually do something to help us now.

Thank you.

At the time I said in the Commons/

?The recent case on ex-police women forced to buy her medicinal cannabis on the streets from the dealers she once arrested illustrates the absurdity of the current laws.

The House of Lords Select Committee on Science, 100 MPs, the Police Foundation and the majority of doctors and the public are in favour of this bill. By a simple change in the law, natural cannabis can be legally available to those suffering from serious ailments.

It is indefensible that last September a Chief Constable said he would not arrest someone for smoking cannabis recreationally in the same month a desperately ill woman was dragged through the courts for using it medicinally."?

Source: http://paulflynnmp.typepad.com/my_weblog/2011/09/death-of-a-campaigner.html

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