“Just to be able to use my hands again would be great”, says Lowestoft woman in fight for multiple sclerosis drug
09:29 29 April 2014
Archant Norfolk © 2014
People living with multiple sclerosis (MS) in Norfolk and Suffolk could be left behind if life-changing medicines continue to be out of reach for many sufferers, a leading charity has warned.
The story behind Sativex
Sativex is a peppermint-flavoured mouth spray that comes in a small pump that people can carry with them.
The medicine in Sativex is extracted from cannabis plants that have been selected and grown to produce a constant amount of active ingredients that have been shown to help improve the symptoms of MS spasticity.
The NHS has a legal obligation to fund all treatments that NICE recommends but currently this does not include Sativex.
A spokesman for Bayer Healthcare, which produces Sativex, said the NICE guidelines for the management of MS were due to be revised and the company was anticipating that Sativex would be included within these.
The MS Society is calling for all drugs licensed for the treatment of MS to be made available to patients on the NHS and has launched the Treat Me Right Campaign to coincide with MS Awareness Week.
Mother-of-one Shona Garrett, from Lowestoft, is just one of potentially many people with MS in the area struggling to access Sativex – a licensed MS medicine designed to reduce muscle spasms and stiffness in people with the condition.
The drug has not been approved by the National Institute for Health and Care Excellence (NICE) and, as a result, is not routinely available to MS sufferers, including those living in Norfolk and Waveney.
Elsewhere in the UK, people receive the medicine on the NHS.
Mrs Garrett, 38, was diagnosed with MS three years ago and must cope with a list of unpleasant symptoms, including pins and needles in her hand, numb fingers, vision and balance problems, muscle stiffness and nerve pain.
She has been placed on a waiting list for Sativex but has been told the funding for it is not available.
Mrs Garrett, who lives in Morton Road with her husband Lee and their one-year-old son, said: “It would be amazing if I could try it.
“People who have tried Sativex and it has worked for them say it has completely changed their life. People say it has helped nerve pain and just to be able to use my hands again would be great.
“If it relaxed my muscles so I could walk easily it would make such a difference. It is like walking uphill at the moment.”
Mrs Garrett, who works for Suffolk County Council, said many of the drugs prescribed for MS were developed for conditions such as epilepsy and depression.
She said some caused drowsiness and she had stopped taking many of them because the side effects outweighed the benefits.
A report released by the MS Society last year found just two in 50 eligible people with MS were taking one of two licensed symptom relief treatments for MS.
Michelle Mitchell, chief executive of the MS Society, said: “We’re worried the gap is widening between the best care some people receive and the worst care many more experience.”
A survey conducted by the EDP found that clinical commissioning groups in north Norfolk, south Norfolk, Norwich and Great Yarmouth and Waveney do not prescribe Sativex to MS sufferers.
It has not been confirmed whether the drug is available in west Norfolk but the policy is understood to be the same as the rest of the county.
A spokesman for Health East, the clinical commissioning group that covers Lowestoft, said Sativex was not routinely commissioned because it had not been approved by NICE.
To mark the start of MS Week, the charity is calling for people with MS to seek a review with a healthcare professional to discuss their treatment options.
It is also urging MS professionals to outline what they will do to help people make informed choices about treatments.
Visit www.treatmerightms.org.uk or call 0808 800 8000 for more information.