'Only cannabis spray relieves my MS - so why won't the NHS give it to me?' Sufferer refused drug to help ease affects of disease  

Mr Rudd was refused Sativex on the NHS while sufferers living a few miles away are being prescribed the cannabis spray

Like many of those facing a diagnosis of multiple sclerosis, Barry Rudd was willing to try anything to be well again.

The property developer from Huntingdon, Cambridgeshire, had been an avid three-times-a-week gym-goer when, in 2004, he was given the devastating news.

Just 53 at the time, he had started feeling tired, and his foot began dragging when he walked. After being referred to a neurologist in June 2005, the diagnosis was finally given: primary progressive multiple sclerosis.

One of the more uncommon forms of the disease, affecting only 15 per cent of sufferers, it causes a steady decline as symptoms worsen.

The condition, in which the immune system attacks the central nervous system, slowly robs sufferers of their balance, movement and speech, causing stiffness, numbness, insomnia, pain and exhaustion.

There was little doctors could do to help Barry and he was drawn by desperation into the murky world of alternative medicine - paying more than £20,000 for bogus treatments in Holland and Poland that had no effect on his condition.

Finally, in late 2010 he saw an article online about a new drug called Sativex. The oral spray is derived from the cannabis plant - but without any of the associated dangers or side effects - and works by dampening down the over-activity in the nervous system that damages the muscles, inhibiting movement.

‘I mentioned it to my neurologist, who said, "You can't get it in this area. If you want it you have to buy it privately." So he gave me a private prescription. I went to my local chemist who charged me £550.'

The supply lasted just six weeks, but the effects were almost immediate. ‘Within a few days I could feel the benefit and after a couple of weeks my symptoms were almost completely gone. I'd say I was 80 per cent better,' says Barry.

But, unable to get an NHS prescription, after three months Barry could no longer afford the treatment. His symptoms flooded back. To add to his misery, he found that a few miles away at Addenbrooke's Hospital in Cambridge, MS patients with symptoms similar to his are being prescribed the drug.

According to Dr Willy Notcutt, consultant in pain management at James Paget Hospital in Great Yarmouth, Sativex can not only alleviate existing problems but could hold back the progression of MS.

‘Sativex is licensed only for the relief of spasticity [tightness in the muscles that affect movement] and found effective in half of cases,' he says. ‘Many patients have discovered what Barry did: it also relieves other symptoms, such as chronic insomnia.'

A major review of trials last December concluded there was insufficient evidence to warrant Sativex's routine use with MS, yet Dr Notcutt is convinced of its effectiveness.

‘We found that patents have substantially improved sleep,' he says. ‘Studies on animals have shown some reduction in disease progression. We know it has an effect on protecting the nervous system.'

The problems have arisen because of the way certain clinical commissioning groups (CCGs - the bodies that have replaced primary care trusts) do their sums. A single bottle costing £125 will contain 90 sprays.

The drug has not yet been assessed by the NHS guidance body, the National Institute for Health and Clinical Excellence - which means funding decisions are not uniform across CCGs.

The result is that it is not being prescribed widely. Earlier this year, British charity the MS Society found that just two in 100 patients were using a symptom-reducing treatment such as Sativex.

Laura Weir, Head of Policy and Campaigns at the MS Society, says: ‘We know that Sativex is not being prescribed in some areas and in other areas it is. We think this is down to CCGs making their own decisions at a local level.'

In 2011 the Midlands Therapeutic Review and Advisory Committee - an independent advisory group that provides guidance on pharmaceutical treatments in the West Midlands - recommended against prescribing Sativex, stating there was ‘inadequate evidence for efficacy and/or safety'.

Weir insists: ‘Their decision, which has triggered similar ones elsewhere, is based on inaccurate analysis of the data, and on the cost impact of the treatment rather than cost effectiveness. We wrote to them to highlight this but the committee has not reviewed the policy.

‘Prescription rates for Sativex in the UK are low. It is a licensed treatment for MS and has undergone extensive clinical testing that found it to be safe and effective. We strongly believe eligible people should be given the opportunity to try treatments that could benefit them.'

Barry turned to a nurse for advice. ‘She told me other patients buy cannabis and mix it into cakes.'
He refuses to consider this option. ‘If there's a drug that's legal - Sativex - and that works for me, why can't I get it on the NHS? The future for me looks grim.'

Dr Notcutt is equally angry. He says: ‘When you find patients, as I have, whose lives are transformed by this drug you're left wondering: are we prepared as a society to leave people in often agonising pain? Or do we provide them with a medicine that might help them?'

THE VIRUS TRIGGER

MS is believed to be genetic - but not necessarily inherited - and triggered by environmental factors such as viruses and a lack of Vitamin D.

Only two per cent of Britain's 100,000 MS sufferers have a parent with the disease.

http://www.dailymail.co.uk 18/05/2013