BMJ 2014;349:g6071 doi: 10.1136/bmj.g6071 (Published 8 October 2014)

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NEWS Prompt diagnosis of multiple sclerosis should be routine, says NICE Zosia Kmietowicz The BMJ

Patients suspected of having multiple sclerosis (MS) should be referred to a neurologist, and existing patients should have a comprehensive review of their care every year, new guidance has said.

Other key recommendations in the guidance from the National Institute for Health and Care Excellence (NICE) included offering MS patients access to multidisciplinary care with physiotherapists, occupational therapists, specialist nurses, and neurologists, and a single point of contact with whom they can raise concerns.1

Speaking at a press briefing to launch the guidance, Paul Cooper, consultant neurologist at the Greater Manchester Neuroscience Centre and chair of the guideline development group, said that inequalities in the care of MS patients across England and Wales needed to be tackled urgently.

“Currently some people are receiving excellent care and support, but others around the country are not,” he said. “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. “It is also important that those with suspected MS see a consultant neurologist promptly. Diagnosis can be difficult, but it is important to get it right because MS has lifelong consequences for the patient. The diagnosis should be made by a neurologist, and not on the basis of a scan.”

The guidance does not recommend fampridine (Fampyra) or the cannabinoid drug Sativex, because both provide only modest benefit in terms of improving symptoms and are costly, said Cooper. Fampridine costs £160 000 for each quality adjusted life year (QALY), while Sativex costs £50 000 a QALY—both above the £30 000 threshold set by NICE. The MS Society described the decision over the drugs as disappointing and said that it “was based on a flawed assessment completed within an inappropriate process.” In August the Welsh medicines board recommended Sativex for treating muscle spasms in MS.2 But Mark Baker, clinical practice director at NICE who was also at the press briefing, said that the Welsh model for assessing Sativex had included information from unpublished studies presented by its manufacturer, GW Pharmaceuticals. The assessment of costs

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also included Spanish studies that looked at social care visits over 16 weeks, the expenses for which were extrapolated to 30 years of MS. Cooper said, “This extrapolation—that people were stable for 30 years—we would not accept. [The Welsh guidelines] are frankly naïve and have accepted the company’s information.”

Michelle Mitchell, chief executive of the MS Society, 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?”

Another “significant omission” from the guidelines was their failure to include any reference to disease modifying treatments for MS, said the society. The MS Trust was also critical of the guidance. It said in a statement, “Our overall frustration with the updated guideline hinges on its failure to draw together its many recommendations into a truly meaningful and comprehensive description of best practice in MS care. This was strongly present in the 2003 guideline, and its loss is disappointing and weakens the value and ultimately the impact of the 2014 revision.” In the United Kingdom, GW Pharmaceuticals has a licensing agreement for Sativex with Bayer HealthCare. A recent investigation in The BMJ on competing interests found that Bayer HealthCare gave £5000 to the MS Society in 2013.3 In recent years the MS Trust has received £50 000 from Biogen Idec, £15 000 from Genzyme, and £5000 from Bayer. 1 2 3

National Institute for Health and Care Excellence. Management of multiple sclerosis in primary and secondary care. October 2014. www.nice.org.uk/guidance/CG186. All Wales Medicines Strategy Group. delta-9-tetrahydrocannabinol/cannabidiol (Sativex). Reference no 644. August 2014. www.awmsg.org/awmsgonline/app/appraisalinfo/644. Arie S, Mahony C. Should patient groups be more transparent about their funding? BMJ 2014;349:g5892.

Cite this as: BMJ 2014;349:g6071 © BMJ Publishing Group Ltd 2014

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BMJ 2014;349:g6071 doi: 10.1136/bmj.g6071 (Published 8 October 2014)

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Prompt diagnosis of multiple sclerosis should be routine, says NICE.

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