TENS OF thousands of people living with the disabling neurological condition multiple sclerosis should have their condition reviewed more regularly and prompt access to specialists, according to new guidelines.
But access to two treatments that campaigners say significantly improve quality of life for people with MS has been blocked by the National Institute for Health and Care Excellence (Nice) in guidelines published today.
Currently, those with MS can be left for more than a year without having their condition and medication monitored, but the updated Nice guidance aims to ensure that people with MS are reviewed more regularly.
Other key recommendations include referring people suspected to have MS to a consultant neurologist and offering sufferers an single point of contact to speak about their care, concerns and treatment options. ‘Multidisciplinary teams’ made up of experts including neurologists, MS nurses, GPs, psychologists, speech and language therapists, occupational therapists, and physiotherapists should oversee care.
Dr Paul Cooper, a consultant neurologist and chairman of the Guideline Development Group (GDG), said currently some people are receiving “excellent care and support” but others around the country are not.
“The care someone receives should not depend on where they live, we want to ensure that throughout the country people with this distressing and disabling disease have prompt access to specialists who understand their needs and can help improve their condition,” he added.
The Nice guidance does not recommend taking Fampyra (Fampridine) or Sativex, advising that there are better treatments available already on the NHS.
Dr Cooper added: “The substantial cost of Sativex and Fampridine compared to the modest benefit does not justify their use; there are better ways to improve care for people with MS.”
The MS Society said the decision to reject the drugs based on cost effectiveness was “flawed”.
It said Sativex, a cannabis-based medicine, was proven to relieve painful muscles spasms and stiffness, while Fampyra has been shown to improve mobility. The decision was particularly disappointing for people with progressive MS, as these drugs represent two of just three MS-specific treatments available to them. It urged NICE to take into account the wider cost benefit of the treatments, such as potential savings in social care costs.
MS Society chief executive Michelle Mitchell said: “There is encouraging and disappointing news in these guidelines. Making sure that people with MS are able to access a team of health and care professionals, with a minimum annual review of their treatment and support are important steps and should not be underestimated. It is vital that these recommendations are implemented without delay.
“However, NICE’s decision to reject Sativex and Fampyra as treatment options is really disappointing. Surely we should be striving for the most innovative treatment and care to be made available to people with MS, not limiting options even further? The guidelines also fail to stress the importance of the many treatments now available for relapsing forms of MS. This will increase the risk of people with MS not receiving the right treatment at the right time.”
Professor Mark Baker, clinical practice director at Nice, said MS can significantly affect a person’s quality of life, and affect life expectancy. He said: “This is why it is important to give people access to the best treatments and specialists who can help them live as normal and as long a life as possible.”
Around 100,000 people in the UK have multiple sclerosis (MS), a life-long condition of the central nervous system that affects the brain and the spinal cord.
There is currently no cure and early symptoms can include limb weakness, lack of coordination, loss of sight, fatigue and bladder and bowel problems, which usually develop in sufferers’ twenties.
The exact cause of MS is not know, and rates vary with latitude - it is more common in Europe than in the Tropics, and it affects more northerners than southerners in the UK. It is more common in women than men.
CAMPAIGNER RUTH Penrose was among a group of MS patients who fought for, and won, access to the drug Tysabri in January 2009 - over a year after NICE approved it.
She has had multiple sclerosis for 14 years, and very much believes a “postcode lottery” exists when it comes to accessing treatment and support. Mrs Penrose, 49, who lives in Wistow, North Yorkshire, but is treated at Pinderfields Hospital in Wakefield, where she campaigned for Tysabri, said: “A lot of people I know have no contact whatsoever with their MS nurse, they feel neglected and forgotten about.”
She welcomed the move to a multidisciplinary approach to care, but warned constituency between hospital trusts was needed.
“Not once have I been offered physiotherapy or rehabilitation after a relapse, but I know down the road in Leeds it’s commonplace,” she said. “There needs to be something in place to stop the postcode lottery.”