The National Institute for Health and Care Excellence has published updated guidance for the NHS on the management of multiple sclerosis but the response from charities has been lukewarm at best.

About 100,000 people in the UK have MS and many can be left for more than a year without having their condition and medication monitored, notes NICE, and it recommends that every person with the disease “has a comprehensive review of all aspects of their care at least once a year and that multidisciplinary teams should oversee the care they receive”.

The new guidance says that these teams should include neurologists, MS nurses, GPs, psychologists, speech and language therapists, occupational therapists and physiotherapists.

The cost watchdog also recommends referring people with suspected MS to a consultant neurologist, offering them “an appropriate single point of contact to speak about their care, concerns and different treatment options”. NICE says it is important to encourage people with MS to exercise and offer supervised exercise programmes for those who struggle with mobility and fatigue.

Paul Cooper of the Greater Manchester Neuroscience Centre and chair of the Guideline Development Group (GDG), said that 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”.

He noted that it is also important that those with suspected MS see a consultant neurologist promptly, as “diagnosis can be difficult, but it is important to get it right because MS has life-long consequences”. He added that “the diagnosis should be made by a neurologist, and not on the basis of a scan”.

The MS Society welcomed the guidance on regular reviews but focused on another recommendation, namely NICE’s decision reject Biogen Idec’s Fampyra, a prolonged-release tablet formulation of fampridine to improve walking in adults and GW Pharmaceuticals’ cannabis-based spasticity treatment Sativex (nabiximols).

Sativex, Fampyra rejection

NICE said a detailed analysis of the evidence “led the GDG to conclude that there are better treatments available already on the NHS”. However, MS Society chief executive Michelle Mitchell said the decision to reject Sativex and Fampyra on the grounds of being too expensive “is really disappointing. The NHS should be striving for the most innovative treatment and care to be made available to people with MS, not limiting options even further”.

The MS Trust said that while the guideline “contains a number of welcome recommendations, it also contains some significant gaps and omissions. Overall we believe it demonstrates a lack of ambition to provide what people with MS need, that is, a genuinely comprehensive description of best practice”.

The charity added that the recommendations that people with MS should have a single point of contact and a comprehensive annual review “are both very positive [but] we are disappointed that the guideline fails to emphasise that MS specialist nurses are ideally placed to deliver these elements”. The latter “and their central role in the delivery of holistic care is a key indicator of overall service quality”.

The Trust went on to say that “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. 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”.

It concluded by saying it now looks forward to the development of the NICE Quality Standards for MS as a follow-up to the guideline. “This is an excellent opportunity for NICE to work with the whole MS community to raise the bar and provide all those working in MS with the tools to deliver the most appropriate services”.