Pubdate: Fri, 22 Aug 2014
Source: Daily Telegraph (UK)
Page: 22
Copyright: 2014 Telegraph Media Group Limited
Author: Nicky Hanes


It's Confusing and Unfair to Deny Sativex Spray to Those Plagued by
Muscle Spasms

I've read with utter frustration news reports over the past week about
plans to make Sativex - an oral cannabis-based spray - available on
the NHS in Wales but not in other parts of Britain. Cannabis grown for
medical use on a farm at a secret location south east of London

Sativex is licensed for people with multiple sclerosis (MS) to
alleviate muscle spasms and stiffness, and I'm one of a few thousand
people in England who could significantly benefit from taking it; I
have secondary progressive MS, experience excruciating muscle spasms
and cannot tolerate any other muscle relaxant treatments.

For me, taking Sativex is the difference between being able to reach
for a drink and take a few steps, or being confined, rigid as a
concrete block, to a wheelchair. It doesn't sound much, but for me it
is life changing. Yet despite support from my consultant neurologist
and other health-care professionals, I have been refused funding to
pay for this simple treatment.

Of course Sativex is not my only option. People have suggested that I
could use herbal cannabis, and I've heard of other MS sufferers going
so far as to grow their own. I can understand why they do, but we
shouldn't be forced to break the law to treat our condition,
especially when a legal alternative is available.

I was diagnosed with MS in 1994. I was 20 years old at the time and my
initial reaction was one of complete bewilderment. I didn't know
anything about MS, but you don't, do you? Not until you're personally
affected. Then it's life-changing.

Back then I had a very active form of "relapsing remitting" MS, which
meant I had regular flare-ups during which my symptoms would worsen
significantly. So I volunteered to go on a clinical trial for an MS
drug that is now one of 10 available on the NHS for people with my
form of the condition.

I responded well to treatment, but when I was pregnant with my second
child (and needed to come off all medication) I could feel the
condition getting a firmer grip on me. It was shortly after I'd had my
baby boy that my neurologist sat down to tell me and my partner that
my MS had advanced to the "secondary progressive" phase. Unlike
relapsing remitting MS, there were no treatments for progressive MS
that could stop the condition from worsening.

Seven years on, while there remain no treatments that can stop my MS
progressing, there are now a small handful of licensed medicines that
can alleviate some of the symptoms. Fampyra, a daily pill, can improve
walking ability and speed. Sativex can alleviate muscle spasm and
stiffness. But research carried out by the MS Society shows only one
in 50 people are taking one of these medicines. Many of those who are
do so through private prescriptions.

I have every type of muscle spasm there is, every part of my body is
affected - from uncontrollable foot-tap and shaking legs to severe
back spasms that throw me against my chair and leave me paralysed for
30 seconds at a time. One can lead to another, and another...
sometimes it's minutes of uncontrollable spasms. It's painful,
distressing and frustrating.

A few years ago a friend of mine was taking Sativex for back pain and
she sent me some to try. The effect was remarkable. I had tried every
treatment for muscle spasms my doctor could provide and could tolerate
none; one of the treatments gave me hepatitis, another resulted in
weird and overwhelming hallucinations.

Two years ago, with support from my MS nurses, physiotherapist, GP,
consultant neurologist and MP, I applied to receive Sativex on the
NHS, but was refused. I appealed, three times, but was

I still struggle, even now, to find the words to describe my
devastation and fury at this. We had worked for about a year on the
application and in that time I'd had to give up work because of the
MS, so I was putting all my energy into making it a success. I was so
deflated when it was refused.

What I have been offered on the NHS is an expensive surgical procedure
to insert a pump in my spine that releases a muscle relaxant treatment
when I feel a spasm coming on. But I have no evidence that this
intrusive procedure will work for me, so I have refused.

I have tried everything to get Sativex on the NHS. I receive UKP500 a
month through my occupational pension, and use all of it to pay for a
monthly private prescription of the drug. We don't have a lot of
money, but we pay it because the improvement I experience is worth it.
To cope financially we've had to make cut-backs. I'm 40 years old. My
partner and I have two young children and I can no longer work  my
pension was intended to support our family live day to day, not fund
my medical care, and it feels so confusing and unfair.

This autumn the National Institute for Health and Care Excellence
publishes its final guidelines for the treatment of MS on the NHS.
This is their chance to make Sativex available to people like me. It's
also time for the Government finally to recognise that cannabis can
alleviate pain  and legalise the drug for medicinal use. 
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MAP posted-by: Jo-D