Cannabis-based drug is 'long overdue' to help MS sufferers

FOR multiple sclerosis sufferer Paul Robinson every day is different. Some days he will wake up with a 'fuzzy' head and some days he struggles with his balance.

This is all down to the condition he was diagnosed with in April 2006, which affects his central nervous system.

It affects nerves in the brain and spinal cord, causing symptoms including problems with muscle movement, balance and vision.

It means Paul struggles to walk and has days where his brain cannot focus as it needs to.

The 42-year-old from Loughor says: "I first started to notice symptoms from 2002 onwards.

"I kept getting a tingly feeling in my hands and feet.

"I went to the doctors a few times and they said it was just down to the manual work I was doing.

"It wasn't until late 2005 that a new doctor started at my surgery and referred me to Morriston Hospital for a variety of tests and an MRI scan.

"The scan showed patches of white on my brain and this was followed by a lumbar puncture which was not a nice experience.

"I was eventually diagnosed with MS in April 2006 and it felt like a relief to know what was wrong.

"However a week later I woke up and thought I'd had a stroke.

"My face had dropped and I couldn't move the right side of my body.

"It took a month to recover from that and my arm hasn't been right since.

"I then continued to have clinical relapses like that one for many years."

Paul, a father of three, says everyone with MS has a different experience as the condition can affect any nerve.

More than 100,000 people in the UK have MS.

Symptoms usually start in people's 20s and 30s and it affects almost three times as many women as men.

Around eight out of 10 people with MS are diagnosed with the relapsing remitting type of MS - which is what Paul has.

He has flare-ups of symptoms, known as relapses.

These can last from a few days to a few months.

These will be followed by periods where symptoms are mild or disappear altogether.

This is known as remission and can last for days, weeks or sometimes months.

Once diagnosed, MS stays with people for life.

But treatments and specialists can help to manage the condition and its symptoms.

Paul's life has changed dramatically since his diagnosis.

He was recently made redundant after working for Admiral Insurance.

There is currently no cure for MS. But there are a number of treatments that can help.

"It has become too difficult to work full time anymore, so I am currently looking for part-time work - preferably in the food industry as that is my passion," he says.

"The way I walk has been affected by my MS. I am very unbalanced and do not have much co-ordination.

"MS can attack any nerve at any time so it can be worrying.

"I haven't had a relapse now for four years which is good but you do go through dark times.

"Some days my head feels like cotton.

"You come to live with your MS and listen to your body."

Paul now runs a drop in centre for other MS suffers in Swansea in order to help others.

He says: "I now run an event called Tucan Tuesday which is held in Cafe Tucan in SA1 every fourth Tuesday of the month.

"It runs from 7pm until 9pm. I have met about 250 people with MS in Swansea since I started the group four years ago."

There is currently no cure or known cause of MS.

But money is being raised by the MS Society for new drugs and research.

Wales has recently become the first country in the UK to approve a cannabis-based drug for sufferers.

Health Minister Mark Drakeford has approved the oral spray Sativex to treat vWelsh patients experiencing symptoms of muscle spasms and stiffness.

Professor Drakeford says: "Following the appraisal of Sativex by the All Wales Medicines Strategy Group, I am pleased to announce we will be making the medicine available on the Welsh NHS to those who need it.

"I hope this decision will help ease the suffering of some of those who have to live with the reality of MS everyday."

Sally Hughes, programme director for policy at the MS Society, says that Wales, as the first UK nation to approve this MS treatment, is leading the way.

"Muscle spasms and stiffness in MS can be painful and distressing," she adds.

"So the availability of a treatment that can potentially alleviate these symptoms is good news.

"We particularly welcome this decision considering the draft NICE clinical guideline, published in April, rejected this treatment for use on the NHS in Wales and England based on a flawed assessment of the drug's cost effectiveness.

"For some time we've been aware of people in Wales paying privately for this licensed treatment - this decision should make life a lot easier for them."

Sativex was first launched in the UK in 2010, but patients have only been able to access the treatment on an ad-hoc basis since.

Until now, authorities had issued no clear guidance on the use of the drug.

Dr Sajida Javaid, a consultant in rehabilitation medicine at Neath Port Talbot Hospital, says: "It is encouraging to see that patients will now have improved access to a treatment that has been proven to provide significant relief from the spasms and cramps associated with spasticity."

And Paul says the new developments are 'long overdue'.

He adds: "I think the new drug is long overdue.

"Over the last few years I have been getting involved with the MS society and helping campaign for new drugs to help MS suffers.

"This drug will not help me in particular as my symptoms are not that advance but it will give relief to others who struggle with more advanced symptoms.

"It is fantastic that is has been finally been approved.

"More work is still needed now to find a cure and a reason why the condition develops.

"Hopefully with the work the MS society is doing we will start to get some answers in the next 10 years."

http://www.southwales-eveningpost.co.uk/Cannabis-based-drug-long-overdue-help-MS/story-22815552-detail/story.html 25/08/2014