PoliticalSpeak & ClinicSpeak: NICE non-guidance

How ineffective, and arrogant, does NICE want to be? #ClinicSpeak #MSBlog #PoliticalSpeak

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.

“If you are not new to the blog you may remember two posts from last year on the then proposed NICE Quality standards?”

Jul 13, 2015  Can we please think about the NICE MS quality standards? A response is due on 5th August. #ClinicSpeak #MSBlog #MSResearch “My post …

Jul 9, 2015  NICE, the National Institute for Health and Care Excellence, have released a draft of their MS quality standards for consultation. As an active …

“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 A1: An NHS MS service provider must know how many MSers should be covered by their service and how many are being regularly followed-up by them. 

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 A4: The proportion of MSers having annual MRI monitoring should be above x% (to be determined).   

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).

Statement A7: The number of fractures in MSers should be lower than x% (proportion of total MSers covered by the service).

Statement A8: The number of pressure sores in MSers should be lower than x% (proportion of total MSers covered by the service).

Statement A9: The number of MSers would have signed-up to an advanced directive should be x% (proportion of total MSers covered by the service). 

“The MS Trust has now posted a long response and hopefully the other organisations who don’t support these quality statements will make public statements as well. I am aware that the ABN has prepared a statement. In my opinion this document is flawed, without buy-in from key stakeholders who deliver the MS services on the ground how does NICE expect people to adopt these standards? NICE has become a very arrogant organisation and is clearly not prepared to listen. I suspect there is a hidden political agenda; why leave out DMTs from the standards and why the lack of focus on people with more disability? This is a very sad state of affairs. What a wasted opportunity?”

“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.”

Why the MS Trust is not endorsing the new NICE Quality Standard for MS? 

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. 

7 thoughts on “PoliticalSpeak & ClinicSpeak: NICE non-guidance”

  1. If NHS England were involved I would imagine the neuroscience CRG group would have fed into it. They have MS specialists on the group so would assume they would represent the voice of MSers. I've learnt its a dog eats dog world when it comes to getting the right treatment and support for MS. These days I concentrate on saving my own ass as campaigning for the greater good and wider masses seems to get you nowhere.

    1. Re.."I've learnt its a dog eats dog world when it comes to getting the right treatment and support for MS."I feel the same to a certain degree about the dog eat dog world, you have to think of yourself and 'fight for your own life'. I do however get involved with signing petitions and campaigns from my home computer.

  2. Living in the US, I would dread to have to deal with NICE. Yes the system here is not perfect but hopefully the ACA will address the shortcommings along with necessary changes in the future.It seems NICE is only an entity of the British system. How does this compare to other European countries like France or Germany in terms of service?

    1. NICE is a British thing that looks for cost effectiveness and through the purchasing power of the whole country allows them to drive the price of drugs down. But this takes time.

  3. Incensed! Where are services for Pediatric MS patients? What is with the focus on Adults, when there ARE children with MS?

  4. Looking for reference to progressive MS, to those of us who, for example, have one massive flare in the "beginning" and then are apparently progressive. For the most part. Possibly/probably. But how is it possible to tell when 85% of brain lesions are clinically silent and one is not monitored? Any excuse to put a PwMS on the "progressive – can't do anything" pile? Saves some money for sure.

  5. "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 am the Policy Officer at the MS Trust. Our new project, MS Forward View, is designed to do exactly that. We have brought together a wide-ranging advisory group reflecting a much broader cross-section of the MS community including the ABN, the National Clinical Directors for Neurology and Rehabilitation, the UKMSSNA, Therapists in MS, RCN, neurologists, MS specialist nurses, rehab physicians, neuro-pharmacists, representatives of both specialised and clinical commisioning from NHS England and local services, the MS Society, people with MS and the pharmaceutical industry. Work is already underway and the metrics development is due to take place this summer, reporting in the autumn.Details of MS Forward View are on the MS Trust website at https://www.mstrust.org.uk/health-professionals/ms-services-nhs/gemss/ms-forward-view.

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