Statement 1. Adults with multiple sclerosis (MS) are given support at the time of diagnosis to understand the condition, its progression and the ways it can be managed, by the consultant neurologist making the diagnosis.
Statement 2. Adults with MS are offered a face‑to‑face follow‑up appointment with a healthcare professional with expertise in MS, to take place within 6 weeks of diagnosis.
Statement 3. Adults with MS have a single point of contact who coordinates access to care from a multidisciplinary team with expertise in MS.
Statement 4. Adults with MS who have problems with mobility or fatigue are offered support to remain physically active.
Statement 5. Adults with MS who have a relapse that would benefit from treatment are offered treatment as soon as possible and within 14 days of the onset of symptoms.
Statement 6. Adults with MS are offered a comprehensive review at least once a year by healthcare professionals with expertise in MS.
“The bad news is that NICE has bulldozed these standards through with only NHS England, a single body endorsing the document (see below), and only one organisation the Royal College of General Practitioners, supporting the document. Noticeable by their absence are the MS charities, the Association of British Neurologists (ABN) and the UK MS Specialist Nurse Association. Why? Simply because these standards are too ‘limp’ and don’t go far enough to catalyse the changes we need in the provision of MS services to pwMS. Although I was being provocative at the time I proposed adding several other standards to the list:
Statement A2: A certain proportion (to be determined) of MSers with relapsing MS need to be on a DMT.
Statement A3: A certain proportion (to be determined) of MSers with relapsing MS need to be on a second-line or highly-effective DMT.
Statement A5: The number of unscheduled or unplanned emergency assessments and/or admissions of MSers should be lower than x% (proportion of total MSers covered by the service).
Statement A6: The number of UTIs in MSers should be lower than x% (proportion of total MSers covered by the service).
“Hopefully out of NICE’s ashes the organisations who did not support NICE, in their flawed endeavor, can come together and develop an alternative set of quality standards. The ‘Alternative Quality Standards’? Standards that are not only more human, but really put the needs of people with MS center stage and are apolitical. I suspect staying apolitical will be difficult, simply challenging NICE will be making a political statement. Increasingly healthcare and politics are becoming intertwined.”
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.