Updated NICE multiple sclerosis guideline contains some good news and some bad news

21 June 2022

Today NICE has published the updated Clinical Guideline Multiple sclerosis in adults: management. There are some positive points in the revised guideline, such as a new section providing sources of information and support for people living with advanced MS. But the MS Trust is disappointed that NICE has not been able to recommend Fampyra.

The NICE Clinical Guideline Multiple sclerosis in adults: management, updates and replaces the 2014 Clinical Guideline. It gives recommendations on how healthcare and other professionals should care for and support people with MS. The guideline covers the NHS in England, and is also used in Wales.

What we like

  • More detail throughout

Extra detail has been added to recommendations throughout the guideline. NICE has expanded information and advice that a health professional should discuss with people who are thinking about starting or extending their family. A new section provides information and support for people whose MS is becoming more advanced. The guideline retains the previous recommendation for a comprehensive annual review, has expanded the list of what this should cover and now advises people to ask for a review if this has not taken place.

  • More healthcare roles recommended for MS teams

The importance of the multi-disciplinary team is recognised and extended to include additional healthcare professionals such as hospital pharmacists and consultants in rehabilitation medicine. The updated guideline also recommends that everyone should be given a single point of contact with knowledge of MS services to coordinate care and help them access services.

  • Personalised discussions about fatigue

Fatigue is one of the most common symptoms of MS and can have a major impact on quality of life. It is only partially improved by medicines, so we welcome the expanded guidance on non-pharmacological treatments for fatigue. These include recommendations to check for non-MS related causes, to offer people a personalised discussion about how they can manage their fatigue and to encourage appropriate exercise.

What we don’t like

  • Fampyra rejected

Fampyra has not been approved despite responses to the draft scope from us and other MS organisations highlighting the experiences of people who have taken this treatment. The guideline acknowledges that Fampyra is clinically effective for some people, but it is not considered to be cost-effective. NHS Scotland and NHS Wales have approved Fampyra at a reduced price agreed with the pharmaceutical company but the NICE guideline development process does not allow for these discussions to take place. We will continue to press for a solution which allows fair access to this treatment across all of the devolved nations.

  • Drug treatments for fatigue

We are also concerned that NICE has recommended drug treatments for fatigue based on very limited clinical evidence. The 2014 Clinical Guideline recommended that amantadine could be offered. In the 2022 Clinical Guideline, NICE suggests that neurologists can consider treatment with amantadine, and has added modafinil, a treatment licensed for narcolepsy (excessive daytime sleepiness) and selective serotonin reuptake inhibitors (SSRIs), a group of medicines which are usually prescribed for severe or persistent depression . The 2014 guideline made a very clear statement that there was insufficient evidence to recommend either modafinil or SSRIs as treatments for MS-related fatigue and warned of potential harms. The quality of the new evidence presented in the 2022 guideline does not justify a change to this recommendation.

  • No guidance on treatment pathways for disease modifying drugs

While the 2022 guideline cross refers to NICE technology appraisals for each of the approved disease modifying drugs for relapsing and progressive MS, there is no general guidance on treatment pathways. As a result, people are given no indication of what they can expect from MS services, in terms of timescales for initial discussions about their treatment options and then for starting a disease modifying drug or a review of their current treatment. This contrasts with other NICE clinical guidelines, such as those for rheumatoid arthritis and Parkinson’s disease, which give significantly more detail of treatment options, recommend timescales for initial discussions and for reviews. We believe that a lack of guidance on treatment pathways has contributed to considerable variation in disease modifying drug prescribing across England and Wales.

National guidelines

The NICE Clinical Guideline, Multiple sclerosis in adults: management, gives recommendations on how healthcare and other professionals should care for and support people with MS. The guideline covers the NHS in England, and is also used in Wales.

Healthcare Improvement Scotland has published general standards for neurological care and support.

The Department for Health for Northern Ireland reviews NICE guidance. The previous 2014 NICE MS Guideline was accepted and an endorsement decision published.