Chris and Anne are a married couple from Hull who both have relapsing MS. They both live with spasticity caused by their MS, and have been trying unsuccessfully to access Sativex for years.
Chris says: “My wife Anne and I met at one of the MS Society social nights and married a year later, in July 2016. Because we both have MS, all of our difficulties are just normal for us.
“I was diagnosed with relapsing MS in 1999 and had spasms from quite early on. I get problems in my legs, arms and hands. They always feel stiff and sometimes my hands twist into shapes which is incapacitating as I can’t do anything.
The best I get is to pass out with exhaustion
“The pain I get from spasticity is particularly bad. It comes from my muscles clenching as hard as they can. At times I’m frightened that the big bones in my leg might actually snap. Afterwards, I feel beaten up, as though my body has been hit by a bat.
“I haven’t really had a good night’s sleep since I’ve been diagnosed with MS. I often wake up in pain and the spasms go on until my muscles are exhausted. I will sometimes scream into my pillow, the pain is so bad. Nights are definitely the worst time for the spasms. The best I get is to pass out with exhaustion.
“But I also have problems in the day. My arm is often very stiff and it can stop me from doing things like cooking and showering, which I rely on other people to help me with.
There’s no difference between me and a person living in York
“I’ve tried every medication to help, but they’ve either not worked, or given me bad side effects. It's so frustrating that there is a treatment available and approved by NICE that I know can help and completely change my life, but I can’t get it.
A private prescription for Sativex will cost in the region of £500 a month, and I can’t afford that. In other areas of the UK, the treatment would be available to me on the NHS.
"I hear people with MS in York talking about how much Sativex has changed their life. It’s so unfair – there’s no difference between me and a person living in York.
“How much longer are we going to have to wait? That’s why I want to share my story – unless people like me speak out nothing will change.”
Anne says: “I was diagnosed with relapsing MS in 2005. But from 2012 onwards things very gradually got worse until I had a very bad relapse in 2015. It left me shaking constantly and was so bad that someone had to hold my head still to feed me. Even then I often choked on the food. I lost a lot of weight as it was so hard to eat. I got down to five and a half stone.
“They implanted a deep brain stimulation device that is usually used for Parkinson’s to see if it could control the constant tremors.
I can’t do anything to reduce the pain
“The tremors weren’t so bad but I now have spasms in my torso and legs. My legs are constantly stiff and I often can’t sleep because of the pain. I sometimes really struggle as I want to get up because it hurts, but I also don’t want to get up because it hurts so much. I can’t do anything to reduce the pain.
I know that Sativex is available and is changing people’s lives. It is so hard to hear that other people are getting it (I am really pleased for them) as it is something I know could help me but I can’t even try it.
“It feels like someone somewhere has something against me and won’t let me try this treatment that could change my life for the better.