The Multiple Sclerosis Trust has chosen not to endorse the new Quality Standard for MS (link is external), published today by NICE.
The MS Trust was closely involved in the development process, contributing to all stages of scoping and consultation. We welcome elements of the standard, in particular statements 2, 3 and 6 which, if implemented, will be a real step forward in ensuring that people with MS get the specialist input they need (see below). But, after careful consideration, we decided we could not endorse the final document. We have three main areas of concern:
1) Inequities in MS services
The narrow focus of the quality standard could drive inequality of service provision, particularly for people with progressive MS. The standard is very focused on diagnosis, discussion of treatment options and managing relapses. While these issues are important, the needs of people with progressive MS are not sufficiently recognised.
People with relapsing remitting MS make up only 51 per cent of MS service caseloads, and our data suggests that people with MS not taking disease modifying drugs are already getting less input from both MS specialist nurses and neurologists than those who are on DMDs. The standard’s focus on relapsing remitting MS could drive further inequality.
Specifically, the focus of statement 5 on treating relapse rather than on assessing and managing acute deteriorations in MS symptoms, will encourage services to prioritise relapse treatment above other important elements of care. This point was made by both the Association of British Neurologists (ABN) and the MS Trust during the consultation, but was not taken into account.
The quality standard could also have highlighted the importance of services for progressive forms of MS such as symptom management, neuro-rehabilitation and palliative care, but none of these elements of care are mentioned.
2) The importance of MS specialist nurses
The standard could and should have recognised the role of MS specialist nurses within the multidisciplinary team.
When the NICE Clinical Guideline on MS was published in 2014, it did not include a recommendation about access to an MS specialist nurse, as NICE considered the available evidence for the value of specialist nurses in MS too limited.
The MS Trust’s GEMSS programme, which published its final report last year, has collected significant new evidence about the value and impact of MS specialist nurses, supporting the view that every person with MS should have ongoing access to one. Not only do specialist nurses benefit people with MS, but they also help to reduce the workload and increase the skills of other health professionals, and save the NHS money in emergency care costs.
3) A flawed process
We believe that the process behind the quality standard was flawed. It was developed with limited involvement from MS neurologists, and there was no MS neurologist on the expert advisory committee. MS neurologists have a unique insight into the challenges facing MS services, so this is a major gap.
We also believe that the advisory committee developing the quality standard was wrongly advised that only recommendations that appear in the clinical guideline can be included for more detailed articulation in the quality standard. Quality standards represent an opportunity to supplement clinical guidelines and NICE can take post-guideline evidence into account in quality statements. The misconception of the advisory committee means that gaps in the guideline have not been addressed, despite the publication of significant evidence on MS services from the GEMSS programme.
The consultation process on the quality standard was tokenistic and lacked transparency.
During the development of the clinical guideline, both the MS Trust and the MS Society raised concerns about the limited opportunities to hear the views of the wider interested community, and the lack of transparency in the process. We have the same concerns about the process used to develop the quality standard.
At every stage of the process, we submitted detailed evidence based on the views of people affected by MS and health professionals. But the process allowed no opportunity to discuss this in detail with NICE, nor receive feedback on the evidence we submitted.
What happens now?
We believe that the biggest challenge facing MS services is how they will meet the drive to get more people with relapsing MS on treatment earlier, while ensuring an equitable service for everyone, no matter what type of MS they have. The MS Trust believes that the quality standard will not help MS services focus on this challenge.
As part of its review process, we would like to see NICE commit to revising the MS quality standard to include a statement on access to MS specialist nurses. We’d like to see the quality standard better address the needs of people with progressive forms of MS. We also believe it’s crucial that the quality standard is properly scrutinised by neurologists with specialist expertise in MS. We would like to see NICE present the quality standard to the MS advisory group of the ABN, and commit to taking on board their input.
What is the Quality Standard for MS and what does it say?
A NICE quality standard is a concise set of statements designed to drive and measure changes that would result in improvements to services – in this case for MS. Quality standards are not targets, but everyone involved in planning, delivering and scrutinising services is required to be aware of the quality standard and take it into account.
CoI: I am a member of the ABN MS and Inflammation Advisory Group and was responsible for coordinating the ABN response to the NICE Quality Standards consultation document.