11
Management of MS in primary and secondary
care – NICE Clinical Guideline
186
: an analysis
of how it measures up
Introduction
In October
2014
, NICE (the National Institute for Health and Care Excellence)
published the first revision of their Clinical Guideline for MS in England. The original
Guideline (CG
8
) was published back in
2003
and, whilst flawed in places, it set out
standards of care across the whole condition and across most therapeutic interventions,
and so became a real standard of best practice.
In the following article we look at what the
2014
Guideline recommends, how it differs
from the
2003
Guideline and what the MS Trust perceives as the strengths and weaknesses
of the new document. We also asked a variety of MS health professionals for their views on
how the new Guideline measures up, which can be found in the second part of this article.
What is a Clinical Guideline?
According to NICE, they produce clinical guidelines that cover a range of topics, including:
• managing specific conditions
• improving health and managing medicines in different settings.
Guideline recommendations set out:
• the care and services that are suitable for most people with a specific condition or need • ways to promote and protect good health • ways to prevent ill health.
They promote integrated care where appropriate. NICE guidelines only cover health and care in England. Decisions on how they apply in other UK countries are made by Ministers in the Welsh Government, Scottish Government and Northern Ireland Executive.
NICE Clinical Guidelines are available for everyone to use, however, it’s generally anticipated that they will be of most value to GPs, and other non-specialist health professionals in clinical decision making. They can also be useful to NHS commissioners and managers to help plan services. NICE also produces an ‘information for the public’ version of every guideline, which people with MS could use in consultations with their health professionals if they choose.
What’s in the 2014 Guideline?
The 2014 NICE MS Guideline makes a series of recommendations about managing someone with MS in primary or secondary care, which can roughly be grouped into the following areas:
• Diagnosing MS – including the importance of referring to a consultant neurologist if MS is suspected, common initial presentations, and excluding alternative diagnoses. It also recommends a review for someone with MS-type symptoms, but who does not achieve a diagnosis.
• Information and support – particularly the importance of oral and written information at diagnosis. This recommendation includes, with the agreement of the person with MS, information for their family, carers and children. The Guideline also recommends a follow-up appointment with a healthcare professional with expertise in MS within 6
weeks of diagnosis, that everyone with MS should have an MS management plan (care plan); and covers advanced care planning and power of attorney where appropriate. • Coordinating care – covers management by
the multidisciplinary team, described in the Guideline as:
• consultant neurologists • MS nurses
• physiotherapists and occupational therapists
• speech and language therapists, psychologists, dietitians, social care and continence specialists
• GPs.
• That everyone with MS should have an appropriate named single point of contact to coordinate care and help them access services. There is also a recommendation around the clinician deciding how often the
12 person with MS should be seen based on their individual needs.
• Health promotion – including smoking, exercise and flu vaccinations. Also assessment for risk of osteoporosis and pressure ulcers, and referral to palliative care services where applicable. The Guideline also looks at information for people with MS who are thinking about pregnancy. The Guideline does not recommend vitamin D “solely for the purpose of treating MS”.
• Symptom management – although some non-pharmacological interventions are covered, the main focus is on the
pharmacological management of symptoms. Recommendations are made around the following symptoms:
• fatigue
• mobility and balance – fampridine (Fampyra) is not recommended on the basis that it is not cost effective
• spasticity – nabiximols (Sativex) is not recommended on the basis that it is not cost effective
• oscillopsia • emotional lability
• pain, including neuropathic and musculoskeletal
• cognitive problems.
• A tailored annual review for everyone with MS conducted by ‘healthcare professionals with expertise in MS’, to include MS symptoms, respiratory function, relapses, general health, comorbidities, social activity and participation, care and carers and an annual medication review.
• Relapse management – should be offered within 14 days of a diagnosed relapse; first line treatment is oral methylprednisolone of 0.5g daily for 5 days; the potential side effects and complications of steroids should be discussed, as should inpatient admission followed by rehabilitation where appropriate, and the importance of informing the MS multidisciplinary team of the relapse.
The Guideline also makes the following five recommendations for research, based on its review of the evidence, to improve NICE guidance and patient care in the future:
• Cognitive rehabilitation: What is the clinical and cost effectiveness of cognitive rehabilitation for people with MS?
• Continued relapses: Is IV methylprednisolone more clinically and cost effective than oral methylprednisolone in people with relapsing remitting MS and people with secondary progressive MS with continued relapses?
• Mobility: What is the optimal frequency, intensity and form of rehabilitation for mobility problems in people with MS? • Spasticity: What non-pharmacological
interventions are effective in reducing spasticity in people with MS?
• Vitamin D: Can vitamin D slow down the progression of disability in MS?
How does the new Guideline differ
from the
2003
Guideline?
On a positive note, the 2014 Guideline recognises the impact of cognition as a symptom of MS and makes recommendations about this, which the 2003 Guideline did not.
Overall, the greatest difference is that the
2003 Guideline offered recommendations about holistic management of MS – with the exception of cognition – from symptom onset to death. The 2014 Guideline does not. There are a number of reasons for this, but the primary one is that in the eleven years between MS Guidelines, NICE has issued symptom-specific guidance in some areas, such as neuropathic pain, the neurogenic bladder and bowel, and depression, consequently it does not include recommendations about these symptoms within the main MS Guideline.
NICE has also restricted the evidence considered in the 2014 Guideline to trials conducted only in MS; the 2003 Guideline looked at evidence in other conditions for some symptoms such as spasticity, ataxia and mobility that might be common to more than one condition. Another drawback is the predominance given to randomised controlled trials (RCTs) when it came to the grading of evidence, which has resulted in specialist nurses, rehabilitation, physiotherapy, occupational therapy and speech and language therapy barely being covered by the Guideline. Consequently the 2014 Guideline is much more limited in scope than the original version.
Comments from the MS Trust
Although there are some positive points to be welcomed, such as the recommendations on the importance of providing clear and practical information for people with MS at the point of diagnosis and the emphasis on the vital role of the multidisciplinary team in the management of MS, overall the MS Trust is disappointed that the 2014 Guideline fails to deliver a comprehensive overview of what people with MS need and what the NHS should deliver.
Whilst pleased to see the recommendation that people with MS should have a single point of contact and a comprehensive annual review with
13
a health professional with expertise in MS, we feel strongly that this was a missed opportunity to emphasise that MS specialist nurses are ideally placed to deliver this, due to their central role in the delivery of holistic care, which is a key indicator of overall service quality. The emphasis on the pharmacological management of symptoms in the Guideline means that the valuable role allied health professionals have in the management of symptoms including
spasticity, fatigue and difficulties with speech or swallowing, is not truly recognised.
Despite some positive recommendations, the Guideline fails to draw together these recommendations into a meaningful and comprehensive description of best practice in MS care. This was strongly present in the 2003
Guideline and its loss weakens the value and impact of the 2014 revision.
NICE Clinical Guideline – The neurologist’s thoughts
David Rog, Consultant Neurologist, Greater Manchester Neurosciences Centre
The NICE Guideline development process follows standardised procedures, including a scoping exercise to generate questions for which evidence is sought and assessed. If evidence is lacking for an intervention or service, recommendations cannot be made.
A concern with any set of guidelines, though not legally mandated, is that they may be interpreted by commissioners as a lowest common denominator. If neurological rehabilitation services are configured to optimally manage patients with MS, a dynamic condition with physical, cognitive, psychological and sometimes psychiatric sequelae, affecting both the spinal cord with acute inflammatory relapses and longer-term neurodegenerative components, intuitively, such a framework could benefit in the optimal management of patients with many types of monophasic and/or limited neurological injuries.
NICE Guideline 186 identifies fewer healthcare professionals involved in the “coordination of care” than the multidisciplinary team members recommended in the 2003 Clinical Guideline 8, which they purport to replace. For example, the role of rehabilitation consultants and ophthalmologists appears to have been omitted, except to recommend that the latter refer cases of optic neuritis to neurologists for further management!
Provision of information and support for those newly diagnosed is welcome and this offers the opportunity to produce a standardised package, developed based upon the input and feedback of patients, supplemented with information on local services.
The disparity between identification of symptoms in the comprehensive review and absence of recommendations for treatment, for example sexual dysfunction, is regrettable. The non-recommendation of nabiximols (Sativex) and fampridine (unless the patient is already receiving them) due to being not cost-effective, unfortunately leaves the minority of patients
with intractable spasticity and gait impairment who note meaningful benefit from these products in limbo.
The challenge to the MS community, prior to revision of these guidelines in 2016, is to generate further evidence, of sufficient quality for consideration under the NICE assessment criteria, to support optimal service provision for people with MS. NICE recommendations for research, especially cognitive rehabilitation are welcome but would be more meaningful if they mandated NHS funding bodies to prioritise grant proposals in these areas, effectively a “funding call”.
The recommendation, to offer “an appropriate single point of contact to coordinate care and help them access services” undoubtedly challenges which healthcare professional is best placed to deliver this. At present this may vary across the country, but our service audit concluded that a third of patients hadn’t visited their GP since diagnosis of MS and that the highest scores on the Friends and Family Test were achieved by the MS nurse. The comprehensive review guidelines, whilst welcome, intersperses both general health and MS-specific outcomes and will require novel ways to address these efficiently, perhaps through the use of questionnaires completed before the patient’s appointment.
Overall, whilst there are some useful new standards (diagnosis, information, comprehensive review), the terms of the NICE Guideline process coupled with incomplete evidence, means that a definitive service framework for optimal management of MS still eludes us.
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NICE Clinical Guideline – The MS nurse’s perspective
Rosie Grove, Clinical MS Specialist (Policy Development), UKMSSNAThe UKMSSNA is disappointed that the NICE Guideline fails to reflect the unique contribution of the MS specialist nurse.
We are pleased that provision of information has been highlighted and agree that equipping the patient with knowledge is vital, but this shouldn’t be reduced to information giving. For example, there is no mention of the work usually undertaken by the specialist nurse in the early days. The growth in the number of disease modifying therapies now available means there is more to discuss and for patients to consider, so consultation appointments can be lengthy, but they are vital to help people be fully engaged in the process. Time spent listening and growing to understand the individual at this early point enables a bond of trust to develop that allows good communication to occur in the future. This is work best undertaken by an MS specialist nurse or clinician with the required specialist knowledge, but is not described in the guidance.
MS nurses working in primary care are not delivering care prescribed by a neurologist, as is implied by the terminology of the Guideline. They are practitioners in their own right with a
recognised specialist knowledge base and skill set. They provide accessible support for their patients and their primary care colleagues. For example, people living with MS attending their GP surgery are often told to “Ask your MS
nurse,” in relation to a query.
It would not be acceptable to use the term “Consultant physician with expertise in MS care” to replace the words “Consultant neurologist” in this document, as the term would not guarantee the level of education and competency required. For the same reason, we would have preferred the term “specialist nurse” or “specialist therapist” be used throughout the Guideline rather than “clinician with expertise in MS”. “Expertise” is too vague and open to misinterpretation. To paraphrase Donald Rumsfeld ‘some people don’t know what they don’t know’, so it’s better to appoint people with the appropriate expertise in the first place and call them MS specialists. This lack of acknowledgement, combined with cost pressures on CCGs, leave MS specialist nurses in a vulnerable position.
NICE Clinical Guideline - The neuropsychologist’s view
Dawn Langdon, Professor of Neuropsychology, Royal Holloway, University of London
Cognitive symptoms are an important part of many people’s experience of MS. What progress does the 2014 NICE Guideline for MS demonstrate for them?
Both NICE Guidelines recommend access to a psychologist. The 2003 NICE Guideline says a clinical psychologist should be an integral member of the neurological rehabilitation team (1.2.2.3). In the 2014 Guideline, this has been softened to “involve” a psychologist, although they still recommend that they should be a specialist with MS expertise (1.3.1).
As part of “Ongoing information and support”, the 2014 NICE Guideline recommends that the possibility of cognitive problems should be broached with people with MS and their families (1.2.8).
The 2014 NICE Guideline has a section on “Cognition including memory” (1.5.31
-33), which advises “Consider referring people with persisting memory or cognitive problems to both an occupational therapist and a neuropsychologist to assess and manage the symptoms”. I think this could have been better worded as “Discuss a specialist referral
for assessment and management of persistent cognitive problems with the person with MS and their family member/carer”.
The 2014 NICE Guideline recommends annual cognitive assessment, as part of the comprehensive review (1.6.3). Usefully, they also recommend advising that relapses can have a temporary effect on cognition (1.7.17).
The 2003 NICE Guideline had quite detailed sections explaining that subtle MS cognitive impairment can interfere with communication and disease management, and that reduced independence and physical function not explicable by motor impairments is likely due to cognitive disability. These were useful pointers, but are not included in the
2014 NICE Guideline. Neither Guideline explains that self-report of cognitive function is influenced by depression, a key issue at consultation, especially for generalist primary care workers.
And now for the good news: the clinical and cost effectiveness of cognitive rehabilitation for people with MS is the first of the 2014 NICE Guideline “Research recommendations” (2.1).
15
The MS Trust GEMSS Programme – addressing the gaps in the NICE Guidance?
Geraldine Mynors, GEMSS Programme Manager, MS Trust
Through the GEMSS programme (Generating Evidence in MS Services), the MS Trust is currently working with 11
teams of MS specialist nurses (including two multidisciplinary teams involving allied health professionals). This brings the number of teams supported to collect and analyse evaluation data about their services over the course of a year to 16. The 40 nurses involved in GEMSS have a combined caseload of over
17,500 people with MS – a sizable proportion of the UK total – and are spread across England and Scotland.
The programme has identified the outcomes which MS specialist nurses (MSSNs) seek to achieve with their patients1, developed
measurement tools to track achievement of many of them, and to describe the services provided. A 30-question survey has been answered by over 1,200 people with MS under the care of GEMSS teams and has rated the extent to which they think MS specialist nurses have contributed to outcomes such as:
• remaining in employment • feeling informed about MS • prompt treatment for relapses
• obtaining benefits and other funding.
A health professional stakeholder survey and case studies will provide further evidence of these benefits, and a new tool, the Dorset Specialist Neurological Intervention Audit Tool (SNIAT) is being used to track the different areas assessed during nurse consultations. Together with descriptive data about service
caseloads and activity, and performance on Key Process Indicators such as the timeliness of annual reviews and holistic assessments for people newly diagnosed with MS, these sources will be used to create a rich picture of how MS specialist nurses operate and what they achieve. The final report is due for publication in the autumn of 2015.
So, will the GEMSS MSSN project report address the evidence gaps exposed by the NICE Guideline development process? The project is a service evaluation, albeit on a large and comprehensive scale, rather than a clinical trial. The programme has not attempted to capture longitudinal data about individual patients over time – a notoriously difficult thing to do even within a research study given the wide range of different outcomes targeted by MSSN services and against the backdrop of a degenerative condition like MS. Nevertheless, the GEMSS programme data will provide evidence that MS specialist nurses make a tangible difference to patients, will show the factors that make their services more or less efficient and effective, and demonstrate the complex and specialist range of skills that MSSNs bring to bear in their practice. The programme will therefore demonstrate conclusively that MSSNs are in a unique position to deliver the vital interventions – particularly at new diagnosis, times of relapse and deterioration, and annual review – which the NICE Guideline recommends.
Reference:
1. Mynors G, Bowen A. MS specialist nursing in the UK 2014: the case for equitable provision. Letchworth: MS Trust; 2014.
Professional development
MS Study Day in Partnership
with ACPIN Devon
This study day will provide health and care professionals with an understanding of important issues relating to the care of people affected by MS.
Date: Tuesday 24th February, 2015
Venue: The Watermark, Ivybridge, Devon Price: £50 +VAT for ACPIN members £65 +VAT for non-members
Speakers include:
• Jenny Freeman, Reader in Physiotherapy and Rehabilitation, University of Plymouth • Hilary Gunn, Lecturer in Physiotherapy,
University of Plymouth
• Timothy Harrower, Consultant Neurologist, Royal Devon and Exeter Hospital
• Lou Jarrett, MS Clinical Nurse Specialist, Royal Devon and Exeter Hospital
• Dawn Langdon, Professor of Neuropsychology, Royal Holloway, University of London
• Jon Marsden, Professor of Neuro-rehabilitation, University of Plymouth.
