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What did we want to see in the NICE guideline?

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Amy Bowen, the MS Trust’s Director of Service Development, explains what’s missing from the NICE Clinical Guideline

Why does the MS Trust think the guideline falls short?

We think the guideline doesn’t deliver for people with MS because it fails to bring together its recommendations into a comprehensive description of best practice in MS care. We would also like to see further recognition of the role of specialist nurses in delivering recommendations, such as the annual review and as the single point of contact for the MS patient.

What do you think about the failure to recommend Sativex and fampridine?

Sativex is a licensed medicine for treating people with moderate to severe spasticity due to their MS. We think that people with MS should have access to treatments that are safe and effective. However, we think these treatments should be part of a wider spasticity management plan, involving physiotherapists and occupational therapists. The guideline doesn’t acknowledge the importance of these roles and this could mean that spasticity services are developed without the most basic elements.

This is just one example of how the guideline fails to deliver an overview of best practice in MS care.

We are also disappointed that fampridine has not been considered by NICE because, in some cases, it can be an effective treatment for MS-related walking problems.

However, as with the case of Sativex, this is just one part of the new guideline and we believe there are wider issues which NICE needs to take into account and where the guideline fall short.

What happens next?

The new guideline is an improvement on the previous draft, particularly the recommendations on clear and practical information, the role of the multidisciplinary team and the recommendations that people with MS should have a single point of contact and annual review.

However, we believe there are still significant gaps and omissions which need to be addressed. The MS Trust wants to work constructively with NICE and other organisations to address these issues.

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