08 October 2014

New guidance to tackle inequalities in multiple sclerosis care

People with multiple sclerosis (MS) should be offered a rapid and accurate diagnosis of their condition and access to specialist advice and proven therapies, says NICE.

MS is the most common neurological condition in young adults in the UK, affecting around 100,000 people.  It can be a highly disabling condition that people live with for many years.

Currently, many people with MS are diagnosed in an ad-hoc way and are often misdiagnosed.  People with MS can be left for more than a year without having their condition and medication monitored.

An audit carried out by the Royal College of Physicians and the MS Trust in 2011 found that although some MS patients received excellent care from the NHS, this was not universal and there were variations in both the quality and the quantity of care provided in England and Wales.

In an update to the original 2003 guideline, NICE has set out how people with MS can receive better care.  Dr Paul Cooper, Consultant Neurologist at the Greater Manchester Neuroscience Centre, who chaired the NICE guideline group, said: “The care someone receives should not depend on where they live. One of the central areas that we have tried to address in the guidance is identifying and recognising inequalities in services and in care throughout the NHS.

“In the past some people got access to prompt and appropriate treatment but many did not.  Many people with MS were diagnosed perhaps in a rather ad-hoc way without access to specialist advice, or information and support at the time of diagnosis. Many were potentially being misdiagnosed. The other area that we have tried to address is improving access to therapies of proven benefit for this disabling and distressing condition.”

Professor Mark Baker, Director of clinical practice at NICE, said: “It’s a paradigm shifting guideline which reshapes much of our advice on MS and its management. It’s a full update and it lays out a new framework for the diagnosis and management of people suspected of having MS.”

In the update, NICE recommends that people with suspected MS should be referred to a consultant neurologist. MS should not be diagnosed on the basis of MRI findings alone and only a consultant neurologist should make the diagnosis of MS.

Every person with MS should have a comprehensive review of all aspects of their care at least once a year and that multidisciplinary teams - made up of MS nurses, GPs, psychologists, and therapists - should oversee the care they receive.

The guidance does not recommend the use of the cannabinoid drug Sativex or fampridine as they provide only a modest benefit at a significant cost to the NHS. Sativex costs £50,000 per quality-adjusted life year (QALY), while fampridine costs in the region of £160,000 per QALY. Both are well above NICE’s threshold of £30,000 per QALY.

Other key recommendations include offering people with MS an appropriate single point of contact to speak about their care, concerns and different treatment options, and encouraging people with MS to exercise. Supervised exercise programmes should be available for those who struggle with mobility and fatigue. 

Are the latest government guidelines on drugs for MS sufferers good news or bad? Listen to a podcast from The Guardian

The care someone receives should not depend on where they live

Dr Paul Cooper, Greater Manchester Neuroscience Centre

It’s a paradigm shifting guideline which reshapes much of our advice on MS and its management

Prof Mark Baker, NICE