Multiple Sclerosis Trust
Spirella Building
Bridge Road
Letchworth Garden City
Hertfordshire
SG6 4ET
MS Society National Ce...
of over 600 pages and to gather the views of people with MS and make our only input into the
guideline.
Having reviewed th...
Upcoming SlideShare
Loading in …5
×

Letter from ms trust and ms society draft NICE guideline for ms

1,615 views

Published on

Published in: Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
1,615
On SlideShare
0
From Embeds
0
Number of Embeds
1,139
Actions
Shares
0
Downloads
5
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

Letter from ms trust and ms society draft NICE guideline for ms

  1. 1. Multiple Sclerosis Trust Spirella Building Bridge Road Letchworth Garden City Hertfordshire SG6 4ET MS Society National Centre 372 Edgware Road London NW2 6ND Professor David Haslam, Chair of the National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence 10 Spring Gardens London SW1A 2BU CC Sir Andrew Dillon, Chief Executive of NICE Earl Howe, Under Secretary of State for Quality Dr Paul Cooper, Chair of NICE Guideline Development Group for multiple sclerosis 28 May 2014 Reference: The draft NICE Clinical Guideline for multiple sclerosis Dear Professor David Haslam, Chair of the National Institute for Health and Care Excellence (NICE), We are writing to you to raise concerns about a lack of transparency and insufficient stakeholder engagement in NICE clinical guideline drafting processes following the publication of the draft Clinical Guideline for multiple sclerosis (MS) on 28 April. NICE is internationally recognised for the way in which it develops its recommendations, and states that it is committed to involving patients in the development of its guidance, and putting the needs and preferences of patients at the heart of its work. In reality however, the transparency of NICE drafting processes and patient involvement differs substantially across the organisation. Whilst technology appraisals for new medicines tend to be very transparent and patient involvement is clearly a key element of that process, the development of guidelines for conditions is noticeably less open and offers limited opportunity to hear the views of the wider interested community, beyond the guideline development group, prior to the draft being published for consultation. Patient groups, whose purpose is to understand and voice the concerns and needs of those they represent, are well placed to provide valuable, evidence-based input into clinical guideline development. Despite this, aside from the initial scoping phase, the largest organisations representing people with MS have been entirely outside of the guideline development process. Now the draft guideline is out for consultation and there are only 6 weeks to review a document
  2. 2. of over 600 pages and to gather the views of people with MS and make our only input into the guideline. Having reviewed the draft guideline, we believe that the lack of engagement during the guideline development process has resulted in an inadequate set of recommendations that will significantly set back the availability and quality of care for people with MS. As it stands the draft guideline is a retrograde step for people with MS and for MS services - the MS community has been waiting for a review of the current guideline for some time and it is frustrating that, unless there is significant change to the draft, the final guideline could leave the MS community in a worse position. We believe that the process for the development of the guideline has hampered the outcome in a number of ways: first, the over-focus on Randomised Controlled Trials (RCTs) has meant that vital elements of MS services and valuable interventions have been omitted. An apparent lack of appreciation of legitimate methodological constraints on evidence for certain interventions has resulted in a draft which is full of gaps and which will fail to resonate with those who receive and deliver services. Both the MS Trust and the MS Society have bodies of reliable and appropriate evidence that could be extremely useful in this respect. The decision not to recommend the licensed symptomatic treatments Sativex (cannabinoids) and Fampyra (fampridine) is also deeply disappointing. Access to these treatments is already extremely low in the UK – just one in 50 people with MS currently have access to them. We believe that the draft guideline has made its negative recommendation on the basis of incorrect evidence – the price used for fampridine for example, has been overestimated by approximately £2500 per treatment. There is a lack of disease modifying treatments for progressive forms of MS and as a consequence there is heavy reliance on symptomatic treatments to reduce the impact of the condition on an individual’s ability to undertake daily activities. In addition, there is an effective responder programme for both these drugs, with low levels of false positives. Given all this, the negative result for these treatments which could make a significant difference to those who would benefit is all the more frustrating. In the case of Sativex, people have been told by successive governments to wait for a pharmacological, legal alternative to cannabis, yet NICE now propose to block access to one such treatment authorised in the UK. The draft guideline entirely fails to address the central issue of service configuration, and what ‘excellence’ should be. Instead, the draft addresses an incomplete set of topics and provides a binary response, which compromises the comprehensiveness of the guideline. It neglects the vital elements of community based provision, barely mentions rehabilitation and, perhaps most worryingly, entirely ignores the issue of specialist MS practitioners, including MS neurologists, MS specialist nurses and allied health professionals. We urge NICE to review its guideline development processes and ensure that there is more consistent engagement with patient organisations and the wider healthcare community. We also urge you to pause the MS Clinical Guideline development process, and conduct a more open and transparent review, giving the MS patient organisations and a broader group of stakeholders a chance to present and discuss the evidence in order to avoid an erosion of services that people with MS need and deserve. Yours sincerely, Nick Rijke, Executive Director of Policy and Research, MS Society Pam Macfarlane, Chief Executive, MS Trust

×