NHS National Institute for Clinical Excellence Multiple sclerosis Management of multiple sclerosis in primary and secondary care Clinical Guideline 8 November 2003
Developed by the National CollaboratingCentre for Chronic Conditions
Clinical Guideline 8 Multiple sclerosis Management of multiple sclerosis in primary and secondary care Issue date: November 2003 To order copies Copies of this guideline can be ordered from the NHS Response Line; telephone 0870 1555 455 and quote reference number N0366. A version for people who want to understand what NICE has told the NHS, called Multiple sclerosis: Understanding NICE Guidance – Information for People with Multiple Sclerosis, Their Families and Carers, and the Public, is also available from the Response Line; quote reference number N0367 for an English only version and N0368 for an English and Welsh version.
This document has been circulated to the following:
• Primary care trust (PCT) chief executives• Local health board (LHB) chief executives • NHS trust chief executives in England and Wales• Strategic health authority chief executives in England and Wales • Medical and nursing directors in England and Wales• Clinical governance leads in England and Wales• Audit leads in England and Wales• NHS trust, PCT and LHB libraries in England and Wales • Patient advice and liaison co-ordinators in England• Consultant neurologists in England and Wales• Consultants in rehabilitation medicine in England and Wales• Directorate nurse managers for physiotherapy, occupational therapy, rehabilitation in
• Heads of physiotherapy in England and Wales• GPs in England and Wales• Practice nurses in England and Wales• NHS Director Wales• Chief Executive of the NHS in England• Chief Medical, Nursing and Pharmaceutical Officers in England and Wales• Medical Director & Head of NHS Quality – Welsh Assembly Government • Commission for Health Improvement• NHS Clinical Governance Support Team• Patient advocacy groups • Representative bodies for health services, professional organisations and statutory bodies, and the
This guidance is written in the following context: This guidance represents the view of the Institute, which was arrived at after careful consideration of the evidence available. Health professionals are expected to take it fully into account when exercising their clinical judgment. The guidance does not, however, override the individual responsibility of health professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer. National Institute for Clinical Excellence
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ISBN: 1-84257-442-6Published by the National Institute for Clinical ExcellenceNovember 2003Typeset by Icon DesignPrinted by Abba Litho Sales Limited, London
National Institute for Clinical Excellence, November 2003. All rights reserved. This material may be freely reproducedfor educational and not-for-profit purposes within the NHS. No reproduction by or for commercial organisations isallowed without the express written permission of the National Institute for Clinical Excellence. Contents Key priorities for implementation Guidance General principles Teamwork Diagnosis Treatment Altering the risk of relapses Rehabilitation and maintenance of functional activities and social participation Managing specific impairments Notes on the scope of the guidance Implementation in the NHS In general Research recommendations Full guideline Related NICE guidance Review date Appendix A: Appendix B: Appendix C: Appendix D:
Technical detail on the criteria for audit
Appendix E :
Summary of the criteria suggested by the
Association of British Neurologists and agreed by the Department of Health to determine eligibility for treatment using interferon beta and glatiramer acetate for people with MS within the ‘risk-sharing scheme’
Appendix F: Multiple sclerosis
Multiple sclerosis (MS) is a disease of the central nervous system (brain and spinal cord). The disease process is one of episodes where white matter within the brain or spinal cord becomes inflamed and then destroyed by the person’s own immune system. These inflamed areas become scarred, giving the disease its name: multiple areas of hardening (sclerosis) within the brain or spinal cord. Many of these episodes do not cause any symptoms, but when sudden symptoms occur the person is said to have had a relapse.
MS usually starts in early adult life. Once present the disease nevergoes; there is no cure and the person lives with the diagnosis for life. For many people with MS, the disease causes little trouble, but forothers it causes problems that can affect all aspects of their own lifeand that of their family.
There are recognised ways of describing different patterns of MS.
• Relapsing/remitting MS – symptoms come and go. Periods of good
health or remission are followed by sudden symptoms or relapses(80% of people at onset).
• Secondary progressive MS – follows on from relapsing/remitting
MS. There are gradually more or worsening symptoms with fewerremissions (about 50% of those with relapsing/remitting MSdevelop secondary progressive MS during the first 10 years of theirillness).
• Primary progressive MS – from the beginning, symptoms gradually
develop and worsen over time (10–15% of people at onset).
Between three and seven people per 100,000 population arediagnosed with MS each year and about 100 to 120 people per100,000 population have MS. From these rates it is estimated that inEngland and Wales about 1800 to 3400 people are newly diagnosedwith MS each year and that 52,000 to 62,000 people have MS. Key priorities for implementation
The following recommendations have been identified as prioritiesfor implementation. Specialised services
Specialist neurological and neurological rehabilitation services shouldbe available to every person with MS, when they need them. This isusually when they develop any new symptom, sign, limitation onactivities, or other problem, or when their circumstances change. Rapid diagnosis
An individual who is suspected of having multiple sclerosis should bereferred to a specialist neurology service, and seen rapidly within anaudited time. The individual should be seen again after allinvestigations necessary to confirm or refute the diagnosis have beencompleted (also rapidly within an audited time). *
Seamless services
Every health commissioning organisation should ensure that allorganisations in a local health area agree and publish protocols forsharing and transferring responsibility for and information aboutpeople with MS, so as to make the service seamless from theindividual’s perspective. A responsive service
All services and service personnel within the healthcare sector shouldrecognise – and respond to – the varying and unique needs andexpectations of each person with MS. The person with MS should beinvolved actively in all decisions and actions. Sensitive but thorough problem assessment
Health service professionals in regular contact with people with MSshould consider in a systematic way whether the person with MS has a‘hidden’ problem contributing to their clinical situation, such asfatigue, depression, cognitive impairment, impaired sexual function orreduced bladder control. Self-referral after discharge
Every person with MS who has been seen by a specialist neurologicalor neurological rehabilitation service should be informed about howto make contact with the service when he or she is no longer underregular treatment or review. The individual should be given guidanceon when such contact is appropriate.
* The Guideline Development Group debated the meaning of the word ‘rapidly’. In this
context, it is taken to mean that the exact time will vary according to clinical need but shouldbe, in the opinion of the development group, no longer than 6 weeks from referral to beingseen by a neurologist, and a further 6 weeks until any necessary investigations are completed.
The following guidance is evidence based. The grading scheme usedfor the recommendations (A, B, C, D, DS, HSC) is described inAppendix A; a summary of the evidence on which the guidance isbased is provided in the full guideline (see Section 5).
Guidance General principles Communication
1.1.1.1 All communication with all people with MS should comply
with the general principles of good communication, shownin Appendix E, Table 1.
1.1.1.2 Some people with MS may not be able to follow everything
fully or remember complex details. This includes people whohave no obvious disability. So, when talking to the personwith MS, the healthcare professional should:
• back up what was said with written (and other) material
Emotional support
1.1.2.1 A person with MS may benefit from emotional support; this
should be considered by each individual and team in contactwith the individual. Where possible, that emotional needshould be met directly or through referral to a suitableresource.
Encouraging autonomy/self-management
1.1.3.1 People with MS should be enabled to play an active part in
making informed decisions in all aspects of their MShealthcare by being given relevant and accurate informationabout each choice and decision.
1.1.3.2 As far as possible, people with MS should be helped to
manage their own general health through the following.
• Information and advice provided in written, audio or
other media on: – specific activities that promote health maintenance and
– changes in their health that may require them to take
– the condition and its management (including both local
and sources of further information and support in clearand accessible language).
This function could be fulfilled by working in conjunctionwith local voluntary organisations.
• And, through acquiring the skills needed to:
– seek, evaluate and use advice and help available– communicate effectively with healthcare professionals
(for example, through participation in the ExpertPatient Programme).
Support to family and carers
1.1.4.1 Family members (including any schoolchildren) living in the
same house as the person with MS, and any family membersdelivering substantial support even if living elsewhere,should be supported by:
• asking about their physical and emotional health and
well-being, especially in the case of children aged 16 yearsor less, and offering advice and referring on for additionalsupport if necessary
• providing them with general factual information about
MS; this should only be extended to include more specificinformation related to the person with MS with thepermission of that person
• ensuring that they are willing to undertake support of
personal activities of daily living (such as dressing andtoileting), are safe and competent at such tasks, and thatthe person with MS is happy for them to provide suchassistance
• informing them about social services carer assessment and
Assessment and measurement
1.1.5.1 The review checklist shown in Appendix E, Table 2 should be
used each time a person with MS starts a new ‘episode ofcare’ (including initial diagnosis), and whether or not thepresenting issues relate to the MS. The healthcareprofessional should:
• record the information for future comparison
• refer to the specific recommendations made in this
document if any problem is identified.
1.1.5.2 Healthcare staff who frequently undertake MS-specific
• be familiar with simple methods for detecting impairment
• be trained in their use and interpretation (if used).
1.1.5.3 All healthcare staff within a local health community should
use the same simple methods for common assessments.
1.1.5.4 When initially assessing an individual, and when undertaking
any treatment, healthcare staff should consider thecharacteristics of a measure (see resource pack on the NICEwebsite: www.nice.org.uk) recognising that:
• formally evaluated measures may not exist or be practical
• personalised measures should be considered, including
comparing the outcome against goals agreed (goalattainment scaling).
1.1.5.5 Before embarking on any course of treatment, the
healthcare professional should be satisfied that theindividual fully understands the implications of thetreatment, and is able to participate in it as necessary.
Further guidance may be found at the Department of Health consentwebsite (www.doh.gov.uk/consent/index.htm). Teamwork Teams and goal setting
1.2.1.1 When several healthcare and other professionals are
involved with a person with MS, they should work togetherwith the person and his or her family, as a team:
• using an agreed common therapeutic approach.
• be agreed as relevant and important by the person with
• cover both short-term specific actions and longer-term
• be challenging or ambitious but achievable
• be set both at the level of individuals and at the level of
• be formulated in such a way as to leave no doubt as to
1.2.1.3 Goal attainment scaling should be considered as one way of
Specialist services
1.2.2.1 Every healthcare commissioning authority should ensure that
all people with MS have ready access to a specialistneurological service for:
• diagnosis of MS initially, and of subsequent symptoms as
• provision of specific pharmacological treatments,
especially disease-modifying drugs, and enacting the risk-sharing scheme for interferon beta and glatiramer acetate.
1.2.2.2 The healthcare commissioning authority should also ensure
that its population has ready access to a specialistneurological rehabilitation service. This should be availableto all people with MS when the presenting problem isoutside the competence of the first point of contact, for:
• undertaking assessment (that is, diagnosis) when the
• undertaking specific pharmacological or other therapies
• providing an integrated programme of rehabilitation
• monitoring change, especially when the person with MS
has more severe impairments or limitations on activities
• giving advice to other services.
1.2.2.3 As a minimum, the specialist neurological rehabilitation
service should have as integral members of its team,specialist:
The team should either have as team members, or through
agreed mechanisms, ready access to other local relevantspecialist services with expertise in treating neurologicallydisabled people, to cover:
• continence advisory and management services
Working across organisations
1.2.3.1 All parts of the healthcare system, social services and other
statutory services should have agreed protocols that specify:
• how responsibility for people with MS is shared with other
• what agreed descriptive information (that is, a common
dataset) about the person with MS should always beshared
• the point of contact within any service or organisation,
1.2.3.2 People with MS should be able to identify and contact:
• a named person in their health area who is responsible for
all NHS services for local people with MS (including co-ordination and collaboration with other statutoryservices)
• a named person in their health area with clinical expertise
who is able to respond to any inquiry on clinical problems(and to guide the person to the most appropriate localservice)
• a named person within any healthcare team with whom
Timing of actions
To be useful (that is, to be effective and efficient) it is important thatany intervention is timely.
1.2.4.1 Any action recommended within these guidelines should be
undertaken within a time that takes into account:
• risk of direct harm associated with any delay
• distress or discomfort being experienced or likely to occur
• risk of secondary complications associated with delay
• risk of harm to others (for example, carers) associated with
• any nationally recommended targets for timing
• action being taken by any other person or service.
Within team communication – a conceptual framework
1.2.5.1 All individual clinicians, professional groups and
organisations involved in the care of those with MS shoulduse the World Health Organization’s InternationalClassification of Functioning (WHO ICF) model of illness, andits vocabulary.
Support over time
1.2.6.1 Services should cater for the varying needs of people with
• responding in a timely and flexible way to the
intermittent acute needs of people with MS, especially inthe early phases
• identifying and reducing the risks of complications that
• making fully available, to people with MS, population-
based programmes of health promotion and/or diseaseprevention (such as screening for cervical carcinoma),specifically taking into account an individual’s possibleimpairments and activity limitations.
1.2.6.2 When any ‘episode of care’ (medical or rehabilitation
treatment programme) ends (that is, when no furtherbenefit is anticipated), the healthcare team should:
• ensure that any necessary long-term support needs are
• ensure that the person with MS knows who to contact and
how to contact them, in the event that the person withMS experiences a change in his/her situation
• discuss with the person with MS whether they want a
regular review of their situation and, if so, agree on asuitable and reasonable interval and method of review(for example, by phone or post or as an outpatient).
1.2.6.3 Health services should ensure that there are mechanisms to
allow good communication between health and socialservices at all times.
1.2.6.4 Individuals who are severely impaired and markedly
dependent should have their support needs reviewed at leastyearly, and they should have these needs met as necessaryand in accordance with their wishes, through one or more ofthe following:
• respite care in another age-appropriate setting
• moving into a residential or nursing home. Diagnosis Involving the individual in the diagnostic process
1.3.1.1 An individual should be informed of the potential diagnosis
of MS, as soon as a diagnosis of MS is considered reasonablylikely (unless there are overwhelming patient-centredreasons for not doing so). This should occur beforeundertaking further investigations to confirm or refute thediagnosis.
1.3.1.2 Throughout the process of investigating and making the
diagnosis of MS, the healthcare professional should:
• find out what and how much information the individual
wants to receive. (This should be reviewed on eachoccasion.)
• discuss the nature and purpose of all investigations,
especially the likely outcomes and their implications forthe individual.
1.3.1.3 If a diagnosis of MS is confirmed, the individual should be
told by a doctor with specialist knowledge about MS. (This isusually a consultant or experienced specialist registrar.) Seealso the recommendations for good communication(Appendix E, Table 1).
1.3.1.4 After the diagnosis has been explained, the individual should
• offered in the near future* at least one more appointment
to see wherever possible the doctor who gave the originaldiagnosis
• put in touch with, or introduced to, a skilled nurse or other
support worker, ideally with specialist knowledge of MSand/or other neurological conditions and counsellingexperience
• offered written information about local and national
disease-specific support organisations including details of local rehabilitation services
• offered information about the disease, preferably in the
form of an information pack, specific to the newlydiagnosed.
1.3.1.5 Within 6 months of diagnosis, the individual should be
offered the opportunity to participate in an educationalprogramme to cover all aspects of MS.
Making the diagnosis of MS
There is no single specific diagnostic test available, but in practice, thediagnosis can be made clinically in most people.
1.3.2.1 When an individual presents with a first episode of
neurological symptoms or signs suggestive of demyelination(and there is no reasonable alternative diagnosis), a diagnosisof MS should be considered.
1.3.2.2 When an individual presents with a second or subsequent set
of neurological symptoms, which are potentially attributableto inflammatory or demyelinating lesions in the centralnervous system (and again, there is no reasonable alternativediagnosis), the individual should be referred to anappropriate expert for investigation.
* The Guideline Development Group debated the meaning of the words "in the near
future". In this context, it is taken to mean that the exact time will vary according toclinical need but should be, in the opinion of the development group, no longer than 4 weeks.
1.3.2.3 A diagnosis of MS should be made clinically:
• by a doctor with specialist neurological experience
• on the basis of evidence of CNS lesions scattered in space
• primarily on the basis of the history and examination.
1.3.2.4 When doubt about the diagnosis remains, further
• find evidence that supports the potential diagnosis of MS.
– Dissemination in space should usually be confirmed, if
necessary, using a magnetic resonance imaging (MRI)scan, interpreted by a neuro-radiologist if possible,using agreed criteria such as those described byMcDonald and colleagues*.
– Dissemination in space may also be confirmed using
evoked potential studies. Visual evoked potentialstudies should be the first choice.
– Dissemination in time should be confirmed clinically, or
using the MRI criteria described by McDonald andcolleagues*.
1.3.2.5 Other tests supportive of the diagnosis of MS, such as
analysis of the cerebrospinal fluid (CSF), should only be usedeither when the investigation is being undertaken to excludealternative diagnosis or when the situation is still clinicallyuncertain.
1.3.2.6 The diagnosis of MS is clinical and an MRI scan should not be
used in isolation to make the diagnosis.
1.3.2.7 A computed tomography (CT) brain scan should only be used
to exclude alternative diagnoses that can be diagnosed usingthat investigation.
1.3.2.8 Any CSF samples taken from individuals who might have MS
should be tested for the presence of oligoclonal bands andshould be compared with serum samples.
1.3.2.9 The evidence supporting the diagnosis and its degree of
certainty should always be documented formally in themedical notes and letters discussing the diagnosis. Thisallows the diagnosis to be critically reviewed andreinvestigated if necessary.
* McDonald et al. (2001) Recommended diagnostic criteria for MS. Annals of Neurology; 50: 121–7
Diagnosis of an acute episode
1.3.3.1 If a person with MS has a relatively sudden (within 12–48
hours) increase in neurological symptoms or disability, ordevelops new neurological symptoms, a formal assessmentshould be made to determine the diagnosis (that is, thereason for the change). This should be recorded clearly.
1.3.3.2 This diagnostic assessment should:
• be undertaken within a time appropriate to the clinical
• consider the presence of an acute infective cause
• involve a GP or acute medical/neurological services.
1.3.3.3 Further neurological investigation should not be undertaken
unless the diagnosis of MS itself is in doubt.
Acute, sometimes painful, reduction or loss of vision in one eye, opticneuritis, is a relatively common presenting symptom of MS.
1.3.3.4 Every individual presenting with an acute decline in visual
acuity, with or without associated pain, should be seen by anophthalmologist for diagnosis.
1.3.3.5 If the diagnosis is confirmed as optic neuritis, without any
other specific cause and possibly due to MS, theophthalmologist should discuss the potential diagnosis withthe individual (unless there are overwhelming patient-centred reasons for not doing so). A further referral to aneurologist for additional assessment should be offered.
An acute episode of weakness or paralysis of both legs, with sensoryloss and loss of control of bowels and bladder, is an emergency thatmay be due to transverse myelitis, and it may be a symptom of MS.
1.3.3.6 Every person presenting with symptoms and signs of acute
spinal cord dysfunction should be investigated urgently,especially to exclude a surgically treatable compressive lesion.
1.3.3.7 If a diagnosis of transverse myelitis is made (and there is no
previous history of neurological dysfunction), the individualshould be informed that one of the possible causes is MS.
Treatment Treatment of acute episodes
Acute episodes of neurological symptoms are thought to arise from aprocess whereby the cerebral white matter becomes inflamed as theindividual’s own immune system starts to damage the myelin sheathsof the nerves (part of the white matter). Treatment recommendationsare independent of whether the symptoms arise from a firstpresentation or a subsequent relapse.
1.4.1.1 Any individual who experiences an acute episode (including
optic neuritis) sufficient to cause distressing symptoms or an increased limitation on activities should be offered a course of high-dose corticosteroids. The course should be started as soon as possible after onset of the relapse and should be either:
• intravenous methylprednisolone, 500 mg–1 g daily, for
• high-dose oral methylprednisolone, 500 mg–2 g daily, for
1.4.1.2 An individual should be given a clear explanation of the risks
and benefits involved in taking corticosteroids.
1.4.1.3 Frequent (more than three times a year) or prolonged
(longer than 3 weeks) use of corticosteroids should beavoided.
1.4.1.4 Other medicines for the treatment of an acute relapse
should not be used unless as part of a formal researchprotocol.
Rehabilitation for an acute episode
1.4.2.1 When a person with MS experiences a sudden increase in
disability or dependence the individual should be:
• given support, as required and as soon as practical, both in
• referred to a specialist neurological rehabilitation service.
The urgency of the referral should be judged at the time,and this referral should be in parallel with any othermedical treatment required.
Interventions affecting disease progression
1.4.3.1 People with relapsing-remitting MS, and those with secondary
progressive MS in which relapses are the dominant clinicalfeature, who meet the criteria developed by the Associationof British Neurologists are eligible for treatment under therisk-sharing scheme. See Health Service Circular 2002/004(www.doh.gov.uk/pricare/drugsmultiplesclerosis.htm) andAppendix E, Table 3 (page 61).
1.4.3.2 People with MS should be advised that linoleic acid
17–23 g/day may reduce progression of disability.
Rich sources of linoleic acid include sunflower, corn, soya andsafflower oils.
1.4.3.3 The following treatments should not be used except in
specific circumstances, detailed below.
• after full discussion and consideration of all the risks
• with formal evaluation, preferably in a randomised or
• by an expert in the use of these medicines in MS
with close monitoring for adverse events.
• intermittent (4-monthly) short (1–9 days) courses of high-
1.4.3.4 The following treatments should not be used (because
research evidence does not show beneficial effects on thecourse of the condition):
• anti-viral (for example, aciclovir, tuberculin)
• long-term treatment with corticosteroids
• myelin basic protein (any type). Altering the risk of relapses Infections and immunisations
Infections may be associated with a worsening of disability,most often through indirect mechanisms such as an increasedtemperature. In some cases, infection may trigger a relapse.
1.5.1.1 People with MS should be offered immunisation against
1.5.1.2 People with MS should have any other immunisation they
need, with advice that there is no known risk of causing arelapse of their MS.
1.5.2 Pregnancy
There is no evidence that pregnancy influences the overall course ofthe condition over time.
1.5.2.1 Women with MS who wish to become pregnant should be
advised that the risk of relapse decreases during pregnancy,and increases transiently postpartum.
1.5.2.2 When giving birth, women with MS should have the
analgesia that seems most appropriate and acceptable tothem, without fear of its affecting their MS.
Stress (various types)
Putative stresses include emotional stress, trauma, and stresses causedby medical intervention. In the absence of conclusive evidence, it hasonly been possible to make a recommendation on stress relative tosurgery.
1.5.3.1 People with MS should be encouraged to have any surgery
they need, using whichever anaesthetic technique isappropriate. They should be informed that there is no knownincrease in the risk of relapse.
Rehabilitation and maintenance of functional activities and social participation
This section focuses on the ways in which health services can helppeople with MS to maximise their level of functional activities (that is,minimise disability and dependence) and help them maintain socialroles. The general items addressed in this section should be looked atin conjunction with the specific recommendations given in Section 1.5. General points
1.6.1.1 If a person with MS starts to experience a new limitation on
his or her activities, the cause should be identified medically,and the following considered:
• is it due to an incidental infection?
• is it part of a gradual progression?
1.6.1.2 If the limitation persists, despite treatment of any identified
cause, the person with MS should be seen and assessed by amultidisciplinary service, specialised in neurologically baseddisability.
This service should implement a rehabilitation programme.
1.6.1.3 The components of the rehabilitation programme should
• Establishing the wishes and expectations of the person
• Assessing and, if necessary, measuring relevant factors, in
order to identify and agree goals with the person; thesemight include one or more of the following: – identifying and treating any treatable underlying
– giving task-related practice of a specific activity or
– providing suitable equipment (with training in its use)– altering the environment as needed – teaching others how to assist with (or take over) tasks.
• Monitoring progress against set goals; the goals should be
reviewed and reset, until no further goals exist and nofurther interventions are needed.
1.6.1.4 Where possible, both assessment and task-related practice
should take place in the environment most appropriate tothe task (for example, home, work or leisure).
Vocational activities – employment and education
1.6.2.1 Any person with MS who is in work or education should be
asked specifically whether they have any problems, forexample motor, fatigue or cognitive difficulties.
1.6.2.2 Any individual who has problems that affect their work or
education should be seen for further assessment of theirdifficulties, preferably by a specialist vocational rehabilitationservice, or specialist neuro-rehabilitation service.
1.6.2.3 The results of the assessment should be used:
• to advise the person with MS on strategies, equipment,
adaptations and services available to assist with vocationaldifficulties; and/or
• to advise the employer or others, with permission from
the person with MS, on strategies, equipment andadaptations to assist; and/or
• to give information to the disability employment advisor,
if involved (see recommendation 1.6.2.4).
1.6.2.4 The person should always be informed about available
vocational support services (currently including DisabilityEmployment Advisers and the Access to Work Scheme), andthat there may be adjustments at work to which they areentitled under the Disability Discrimination Act.
1.6.2.5 Any individual who cannot stay in or find alternative
employment should be advised about other options such asvoluntary work and where to find information about theseoptions.
Leisure and social interaction
1.6.3.1 Any person with MS whose participation in or enjoyment of
a leisure or social activity becomes limited should be referredto a specialist neurological rehabilitation service whichshould:
• identify whether previous activities are still achievable
and, if not, help the person consider new activities
• assess for, and then teach, the skills and techniques that
• if necessary refer the person to local services that might
help them establish and continue leisure and socialactivities. 1.6.4 Mobility
1.6.4.1 Any person with MS who experiences reduced mobility (and
it affects or threatens his or her activities) should be seenand assessed by a specialist neurological rehabilitationservice. The assessment should determine whichinterventions are needed:
• identification and treatment of any underlying
impairment, especially weakness, fatigue, spasticity, ataxia,sensory loss and loss of confidence
• task-related practice of a specific mobility activity or
activities (for example, walking, transferring, using awheelchair, climbing stairs)
• provision of suitable equipment, including wheelchairs,
driving equipment and adaptive technology (with trainingin its use)
• alteration of the environment to increase independent
• teaching others how to safely assist with (or take over)
tasks such as walking, climbing stairs, moving in bed ortransferring.
1.6.4.2 Physiotherapy treatments aimed at improving walking
• offered to a person with MS who is, or could be, walking
• given at home or on an outpatient basis, depending on
the preference of the person with MS and local resources.
Activities of daily living
Activities of daily living are usually divided into personal, domesticand community activities.
1.6.5.1 Any person with MS who experiences a limitation in
personal, domestic or community activities should receive acomprehensive multidisciplinary assessment. This should becarried out by a team experienced in the treatment andmanagement of MS, and should cover the person’s previousand current functioning in the following areas:
• personal activities such as dressing, eating, using the toilet
• domestic activities such as cooking, washing and ironing
clothes, keeping the house clean and dealing withhousehold bills
• community activities such as shopping, using public
transport, negotiating the environment safely (forexample, avoiding traffic) and accessing other publicamenities
• any caring or support activities within the home, including
1.6.5.2 A comprehensive assessment of this type should:
• actively involve the person with MS, encouraging them to
think about and define what they need to continue toachieve their goals and aspirations
• take place on more than one occasion and in different
• take into account the individual’s priorities, interests, goals
• consider environmental factors, and the support available
• take into account both current and future needs.
1.6.5.3 After the assessment, a programme of interventions should
be developed for the person with MS, with the aim ofincreasing and maintaining independence wherever possible. The programme of interventions should be agreed by theindividual. The interventions specified should be goal-directed, and designed to meet the individual’s priorities,interests and potential.
1.6.5.4 If the individual agrees, the programme of interventions
should be shared with social services, and this must occur ifsocial services are to be responsible for maintenanceinterventions.
1.6.5.5 There should be regular monitoring to check how effective
the interventions are, with a view to changing them ifnecessary.
1.6.5.6 At the end of the planned programme, the person should
know how to obtain a re-assessment if their situationchanges.
Equipment, adaptations and personal support
1.6.6.1 Every person with MS whose activities are persistently
affected should be assessed by a specialist neurologicalrehabilitation service to determine how their environmentmight be improved, enabling for example:
• an increase in the person’s independence
• the impact on their activities to be minimised
• a reduction in risk to the person or their carers.
The environmental changes considered should include thefollowing:
• provision of (or changes in) equipment
• alterations in the structure of the building
• provision of (or change in) the personal support provided.
1.6.6.2 If a person with MS depends on someone else for an activity
(especially in mobility), an expert should assess whether anaid or adaptation, including an environmental controlsystem, could be of benefit. For example, it may increase theindependence of the person with MS, and/or minimise thestress on, or risk for, the person who assists them. The personwith MS or, if necessary, their family and/or carers, should betaught how to use the equipment. Ability and safety in usingthe equipment should be checked at least once, after asuitable interval.
1.6.6.3 The service providing or recommending the equipment
should ensure the equipment’s continuing appropriatenessand safety, at appropriate intervals.
1.6.6.4 If a person with MS receives support or supervision from
someone, for any particular activity, an assessment should bemade to determine whether a greater level of independencecould be achieved.
1.6.6.5 If personal support is provided by family, friends or paid
carers, an expert should offer knowledge and skills to helpthe carer(s) provide assistance in ways that maintain thedignity and utmost independence of the person with MS,while also not threatening the health or well-being of thecarers.
1.6.6.6 If support is given on a daily basis for more than 1 hour, then
the level and appropriateness of the support offered shouldbe monitored, at a minimum, on a yearly basis. It should alsobe reviewed after any significant medical event (for example,infection, relapse, complication, departure of familymember). Any person involved in hands-on activities,especially physical moving and handling, should be taughtappropriate safe techniques for the individual situation, andshould be able to seek further tuition or advice when theyneed it.
Managing specific impairments
The range of potential symptoms is vast; only the more common onesare covered in these guidelines. In most people there will be several ifnot many symptoms, and although this section is subdivided bysymptom, in practice the overall situation of the individual mustalways be borne in mind before acting. Thus for each impairmentthere is an unwritten first recommendation – do not start or modifytreatment until all aspects of the individual’s clinical situation havebeen established and understood, and the wishes and expectations ofthe person with MS have been established. 1.7.1 Fatigue
1.7.1.1 Each professional in contact with a person with MS should
consider whether fatigue is a significant problem or acontributing factor to their current clinical state.
If fatigue is disrupting the individual’s life, then the followingrecommendations apply.
1.7.1.2 The presence of significant depression should be considered;
if significant depression is present, it should be treated.
1.7.1.3 Other factors causing fatigue, such as disturbed sleep,
chronic pain and poor nutrition, should be identified andtreated if possible.
1.7.1.4 Some medicines may exaggerate fatigue, thus any
medication being taken should be reviewed.
1.7.1.5 General advice and training on how to manage fatigue should
be given, including encouragement to undertake aerobicexercise and to use energy-conservation techniques.
1.7.1.6 At present, no medicines targeted at fatigue should be used
routinely,although people with fatigue should be informed that a
small clinical benefit might be gained from takingamantadine 200 mg daily.
Bladder problems
1.7.2.1 Each professional in contact with a person with MS should
consider whether the person has any problems controllingbladder function. Problems may include frequency orurgency of micturition, sleep disturbance from nocturia(awaking with need to empty bladder), difficulty in passingurine or incontinence of urine.
1.7.2.2 Any person with MS who has bladder symptoms should:
• have their post-micturition residual bladder volume
measured using a simple measure such as ultra-sonographyof the bladder
• be assessed for the presence of a urinary tract infection
clinically and, if necessary, using an appropriate dipstickfor nitrites and leucocyte esterase. Treatment should beprovided, if necessary. (See also Section 1.7.3.)
1.7.2.3 Urgency or urge incontinence sufficient to be bothersome or
cause incontinence should be treated in the first instanceusing:
• advice on changes to clothing and/or toilet arrangements
(for example, provision of a commode downstairs)
• intermittent self-catheterisation if there is a high residual
volume, and the person is able and willing
• checking for an increased post-voiding residual volume if
1.7.2.4 Any person who has nocturia should be offered
desmopressin (100–400 µg orally or 10–40 µg intranasally) atnight, to control the symptom.
1.7.2.5 Any person who wishes to control urinary frequency during
the day (for example, when travelling), and who has failed with other measures, should be offered desmopressin (100–400 µg orally or 10–40 µg intranasally), but desmopressin should never be used more than once in 24 hours.
1.7.2.6 Any person with MS who, despite treatment, has
incontinence more than once a week should:
• be referred to a specialist continence service for further
• be considered for a course of pelvic floor exercises
preceded by a course of electrical stimulation of the pelvic
floor muscles (if such a course is available).
1.7.2.7 Any person with MS who experiences persistent incontinence
should be offered a convene drain (for men) or pads (forwomen).
1.7.2.8 Any person who has continued bladder symptoms despite
pharmacological and other treatments should be considered:
• for intermittent self-catheterisation taught by a suitably
• for longer-term urethral catheterisation as a means of
control, with suprapubic catheterisation being considered especially when active sexual function is still wanted. See recommendations below on use of catheters.
1.7.2.9 Intravesical botulinum toxin should only be used by suitably
trained doctors in the context of clinical research.
Urinary tract infections
1.7.3.1 Any person with MS at risk of urinary tract infections should
not be recommended prophylactic use of antibiotics orcranberry juice.
1.7.3.2 If a person with MS experiences new urinary tract symptoms,
or develops general malaise and/or worsening of existingsymptoms with a raised temperature, they should:
• be given a urine dipstick test for infection, and culture, if
• be offered treatment with an appropriate antibiotic.
1.7.3.3 Any person with MS with more than three confirmed
episodes of urinary tract infection in a period of 1 yearshould be assessed by a continence specialist for residualurine and other evidence of risk factors, and offeredappropriate treatment and guidance.
1.7.3.4 The general principles of care for people with long-term
urinary catheters, as described in the NICE guideline onprevention of healthcare-associated infection in primary andcommunity care (see Section 6) should be followed. Ofparticular note in treating a person with MS are:
• be used only after all reasonable non-invasive methods
• be reviewed regularly, to check whether alternative less
Drainage systems from the catheter should:
• be emptied regularly, before the bag is over-full
• bladder installations and wash-outs should not be
1.7.4 Bowel problems
1.7.4.1 Each professional in contact with a person with MS should
consider whether the person has any problems controllingbowel function. Potential problems include urgency,difficulty, pain, constipation or incontinence.
1.7.4.2 Any person with MS who has apparent constipation (pain on
or difficulty with defecation, bowels open less than twice aweek) should be offered advice on fluid intake and dietarychanges that might help, and then be considered for orallaxatives.
1.7.4.3 Any individual with faecal incontinence should be assessed
for constipation with overflow, possibly exacerbated bylaxative use.
1.7.4.4 If a person with MS has apparent constipation (pain on or
difficulty with defecation, bowels open less than twice aweek) despite treatment with oral laxatives, he or she shouldbe considered for the routine use of suppositories or enemas.
Weakness and cardio-respiratory fitness
1.7.5.1 Each professional in contact with a person with MS should
consider whether muscular weakness is a significant problem,or contributing factor, to the person’s current clinical state. Ifso, the person should be assessed to determine the natureand cause of the weakness.
1.7.5.2 People with a limitation of their activities should be assessed
for weakness of voluntary motor control using a validtechnique.
1.7.5.3 People with motor weakness should be shown and advised to
undertake exercises and techniques to maximise strength andendurance appropriate to their circumstances,including aerobic training.
Usually, specific exercises should be selected and explained by
1.7.5.4 People with motor weakness should be taught techniques
and given equipment, such as orthoses, needed to optimiseperformance of activities appropriate to their circumstances.
1.7.5.5 People with weakness sufficient to cause postural
abnormalities should be assessed for specialist supportiveequipment, including but not limited to seating.
Spasticity and spasms
1.7.6.1 Each professional in contact with a person with MS who has
any muscle weakness should consider whether spasticity orspasms are a significant problem, or a contributing factor, tothe person’s current clinical state.
1.7.6.2 If spasticity or spasms are present, then simple causative or
aggravating factors such as pain and infection should besought and treated.
1.7.6.3 Every person with MS who has persistent spasticity and/or
spasms should be seen by a neuro-physiotherapist to assessand advise on physical techniques, such as passive stretchingand other physical techniques, to reduce spasticity andespecially to avoid the development of contractures. Familiesand carers should be taught how to prevent problemsworsening, and a monitoring system should be put in place.
1.7.6.4 More active specific measures should be considered only if
the spasms or spasticity are causing pain or distress, or arelimiting (further) the individual’s dependence and activities. In this case, both benefits and risks should be consideredcarefully. A specific goal (or goals) should be set, but willrarely include improved performance in activities.
1.7.6.5 Initial specific pharmacological treatment for bothersome
regional or global spasticity or spasms should be withbaclofen or gabapentin.
The following should be given only if treatment withbaclofen or gabapentin is unsuccessful or side effects areintolerable:
Combinations of medicines, and other medicines such as
anticonvulsants, should only be used after seeking furtherspecialist advice.
1.7.6.6 People with MS who have troublesome spasticity and spasms
unresponsive to simpler treatments should be seen by a teamspecialising in the assessment and management of spasticity.
The team should consider using one or more of thefollowing:
• standing and weight-bearing through legs
• special or customised seating, such as tilt-in-space chairs
• phenol injections to motor points or intrathecally.
1.7.6.7 Intramuscular botulinum toxin should not be used routinely,
but can be considered for relatively localised hypertonia orspasticity that is not responding to other treatments. Itshould be used when specific goals can be identified, and:
• in the context of a specialist service that can consider all
aspects of rehabilitation (for example, seating)
• by someone with appropriate experience and expertise
• followed by active input from a neuro-physiotherapist.
Contractures at joints
1.7.7.1 Any person with MS who has weakness and/or spasticity
sufficient to limit the regular daily range of movementaround a joint should be considered at risk of developing acontracture at that joint, and should be considered forpreventative measures.
1.7.7.2 Any person with MS at risk of developing contractures
should have the underlying impairments assessed andameliorated if possible (see sections on weakness [1.7.5] andspasticity [1.7.6]).
1.7.7.3 Any person with MS at risk of developing contractures
should be informed; the individual, and or carer(s) should betaught how to undertake preventative measures, such asregular passive stretching of the joint(s) at risk andappropriate positioning of limbs at rest. In more severeinstances, specialist advice should be obtained on seatingand positioning, including positioning in bed.
1.7.7.4 Any person with MS who develops a contracture should be
assessed by a suitable specialist for specific treatment; theassessment should take into account the problems caused bythe contracture, the discomfort and risk of any treatmentand the wishes of the person. At the same time, renewedefforts should be made to reduce the underlying causes andto prevent further contracture.
1.7.7.5 Specific treatment modalities to be considered should
• other similar methods, such as standing in a standing
• local botulinum toxin injection, and
Ataxia and tremor
1.7.8.1 Any person with MS who experiences a limitation of
activities due to tremor should be assessed:
• by a specialist rehabilitation team for medicines,
treatment techniques and equipment (using the generalprinciples of goal setting and evaluation recommended)
and, if problems remain severe and intractable, the personshould be assessed:
• by a neurosurgical team from a specialist centre, for
suitability for an operation to reduce ataxia (after beinggiven a full explanation of its major risks and possiblebenefits). Sensory losses
1.7.9.1 Any person with MS who experiences a limitation of
activities not otherwise explained should be assessed forsensory losses.
1.7.9.2 Any person with sensory disturbance sufficient to limit
activities should be seen and assessed by a specialistrehabilitation team; the individual should be given advice ontechniques and equipment to ameliorate their limitations,and advice on personal safety.
Visual problems
Difficulty in reading or seeing television is not uncommon, and theusual reason (other than the lack of glasses) is that the control overeye movement is poor. Actual loss of visual function due to opticneuritis is rare.
1.7.10.1 Each professional in contact with a person with MS should
consider whether the individual’s vision is disturbed, byconsidering, for example, the individual’s ability to read thetext of a newspaper, book or other written material and tosee the television.
1.7.10.2 Any person with MS who is unable to read normal print or to
see the television should be assessed for glasses by anoptometrist.
1.7.10.3 Any individual who experiences reduced visual acuity, despite
using suitable glasses, should be assessed in a specialistophthalmology clinic.
1.7.10.4 Any person with MS who has nystagmus that causes reduced
visual acuity or other visual symptoms should be offered atime-limited trial of treatment with oral gabapentin. Thisshould be initiated and monitored by a suitable specialist.
1.7.10.5 Any person with MS who is unable to read (due to low visual
acuity) or to see television, despite all available treatment,should be:
• assessed for low-vision equipment and adaptive
• referred to the appropriate specialist social services team
• registered as partially sighted.
Pain may arise either directly from the neurological damage(neuropathic pain) or from musculoskeletal problems due to reducedmobility. People with MS may also have pain from unrelated causes.
1.7.11.1 Each professional in contact with a person with MS should
ask whether pain is a significant problem for the person, orwhether it is a contributing factor to their current clinicalstate.
1.7.11.2 All pain, including hypersensitivity and spontaneous sharp
pain, suffered by a person with MS should be subject to fullclinical diagnosis, including a referral to an appropriatespecialist service if needed.
1.7.11.3 Every person with MS who has musculoskeletal pain
secondary to reduced or abnormal movement should beassessed by specialist therapists to see whether exercise,passive movement, better seating or other procedures mightbe of benefit.
1.7.11.4 If non-pharmacological means are proving unsuccessful in
managing the musculoskeletal pain (arising from reducedmovement and/or abnormal posture), the individual shouldbe offered appropriate analgesic medicines.
1.7.11.5 Any person with MS who has continuing unresolved
secondary musculoskeletal pain should be considered fortranscutaneous nerve stimulation or antidepressantmedication.
1.7.11.6 Treatments that should not be used routinely for
musculoskeletal pain include ultrasound, low-grade lasertreatment and anticonvulsant medicines.
1.7.11.7 Cognitive behavioural and imagery treatment methods
should be considered in a person with MS who hasmusculoskeletal pain only if the person has sufficiently well-preserved cognition to participate actively.
1.7.11.8 Neuropathic pain, characterised by its sharp and often
shooting nature, and any painful hypersensitivity, should betreated using anticonvulsants such as carbamazepine orgabapentin, or using antidepressants such as amitriptyline.
1.7.11.9 If the neuropathic pain remains uncontrolled after initial
treatments have been tried, the individual should bereferred to a specialist pain service.
1.7.12 Cognitive
About half of all people with MS may have impaired ability to learnand remember, to plan, to concentrate and to handle informationquickly. The relatively high frequency of these losses is often notappreciated by clinicians, but equally must not be assumed.
1.7.12.1 Healthcare staff should always consider whether the person
with MS has any impairment of attention, memory andexecutive functions sufficient to be a problem, or to be acontributing factor to their current clinical status.
1.7.12.2 When a person with MS is being involved in making a
complex medical decision, or is starting a course of complextreatment that requires their active participation, theyshould have their cognition sensitively assessed to ascertaintheir ability to understand and participate adequately, andto determine what support they may need.
1.7.12.3 Any person with MS experiencing problems due to cognitive
• have their medication reviewed, to minimise iatrogenic
• be assessed for depression, and treated if appropriate.
1.7.12.4 Any person with MS complaining of cognitive problems, and
any person where this is suspected clinically, should be:
• offered a formal cognitive assessment, coupled with
specialist advice on the implications of the results
• advised, if necessary, about any vulnerability to financial
or other abuse that may arise, and how to reduce the risk
• asked whether the results can be communicated to other
1.7.12.5 Any person with MS whose level of dependence or whose
social behaviour cannot be easily understood in terms ofother known impairments or factors should be offered aformal neuro-psychological assessment by a specialist clinicalpsychologist (and speech and language therapist ifappropriate); it should be investigated whether cognitive orcommunicative losses are a contributing factor and, if so,appropriate management should be recommended.
1.7.13 Emotionalism
1.7.13.1 A person with MS may comment (or it may be noticed) that
they may cry or laugh with minimal provocation and withlittle control; the individual should be offered a fullassessment of their emotional state by someone withsuitable expertise.
1.7.13.2 If the emotionalism is sufficient to cause concern or distress
to the person with MS, or their family, then treatment withan antidepressant should be offered:
• usually a tricyclic antidepressant, or
• a selective serotonin re-uptake inhibitor.
1.7.13.3 If the person with MS still has uncontrolled emotionalism, is
unwilling or unable to take antidepressants or is notresponsive to antidepressants, then advice on behaviouralmanagement strategies should be offered by a suitableexpert.
1.7.14 Depression
1.7.14.1 If depression is suspected, the person with MS should be
• by asking "Do you feel depressed?", or using a similar
• by a liaison psychiatrist if severe depression is present.
1.7.14.2 In any person with MS who is depressed, a list of possible
contributing factors (such as chronic pain and social isolation)should be drawn up.
1.7.14.3 Assessment and interventions should be undertaken to
ameliorate those contributing factors, where possible.
1.7.14.4 Specific antidepressant medication,
or psychological treatments such as cognitive behavioural
therapy,should be considered, but only as part of an overall
1.7.14.5 Other concurrent psychological diagnoses, especially anxiety,
1.7.15.1 Any person with MS whose function or happiness is being
adversely affected by anxiety should be offered specialistassessment and management.
1.7.15.2 In people with MS with marked anxiety, psychologically
1.7.15.3 Pharmacological treatment of anxiety should be through
using antidepressants or benzodiazepines.
The Committee on Safety of Medicines (CSM) guidelines onthe use of benzodiazepines (reproduced in the BritishNational Formulary) should be used.
1.7.16 Swallowing difficulties
Dysphagia (disturbance of swallowing) may lead to choking andaspiration of food or liquid into the lungs. It is more common inthose with severe impairment. Facilities for the insertion ofpercutaneous endoscopic gastrostomy (PEG) tubes are widely available.
1.7.16.1 Any person with MS who is unable to transfer from bed to
chair independently or who has any symptoms or signs ofbulbar dysfunction such as any abnormality of eyemovements, slurring of speech or ataxia, should be askedwhether they have difficulties with chewing, or swallowingfood or fluids (for example, coughing), also whether theyhave altered their diet because of previous problems.
1.7.16.2 Any person with MS with any bulbar symptoms or signs, and
any person with MS who has a chest infection, should havetheir swallowing assessed by a competent person (using astandardised swallowing test).
1.7.16.3 People with MS who, on formal assessment, have an
abnormality of swallowing should be further assessed by aspecialist speech and language therapist. Advice should begiven on specific swallowing techniques, and on adaptingfood consistencies and dietary intake. Further diagnosticassessment (for example, by videofluoroscopy) should beundertaken if:
• first-line therapy and advice are ineffective
• a specific objective of the investigation can be identified.
1.7.16.4 Any person with MS who has difficulty swallowing for more
than a few days should be assessed by a neurologicalrehabilitation team, to review the need for:
• adjustments to or provision of seating that will increase
ease and safety of swallowing and feeding
• short-term use of nasogastric tube, especially if recovery is
1.7.16.5 Any person with MS who has swallowing difficulties for
more than 1 month should have his or her weight ornutritional status checked on a monthly basis (using avalidated nutritional measure if needed). Dietary intakeshould be reviewed if there is continuing weight loss orevidence of malnutrition.
1.7.16.6 If PEG feeding is anticipated as being a likely future option,
discussions with the person with MS should be commencedat an early stage and their wishes documented.
1.7.16.7 If swallowing difficulties persist, a PEG tube should be
considered if any of the following occur:
• nasogastric tube in situ for over 1 month.
1.7.16.8 If PEG placement is indicated and agreed, the PEG tube
should be inserted by a suitable specialist. Before the personwith MS is discharged from hospital, full training should begiven to any family members and carers who are going to beinvolved in feeding.
Speech difficulties
1.7.17.1 Any person with MS who has dysarthria sufficient to affect
communication with people outside the home or over thephone, and any person who is concerned about their speechsound or clarity, should be assessed and given advice by aspecialist speech and language therapist.
1.7.17.2 Any person with MS whose ability to communicate is
affected significantly by dysarthria should be taughttechniques to improve and maintain speech production andclarity; tuition should be provided by a specialist speech andlanguage therapist, working with any other members of theneurological rehabilitation service who are involved.
1.7.17.3 Any person who continues to have difficulties in
communication should be considered for, and if appropriatetaught the use of, alternative non-verbal means of assistingwith or replacing speech.
1.7.17.4 Any person with MS who cannot communicate effectively
should be assessed by a specialist speech and languagetherapist for an augmentative aid to communication, whichshould then be provided as soon as possible. The familymembers, carers and other frequent communicators with anyperson with MS who has significant communicationdifficulties should have discussions with the speech andlanguage therapist on how best to help the personcommunicate.
Sexual dysfunction
MS may disturb the normal sexual physiology, and it may result inother impairments (such as spasms) that make normal sexualbehaviour difficult. These may make it difficult for the person toestablish or maintain partnership relations. Both aspects areimportant and should be considered together.
• should be asked whether they experience erectile
dysfunction (relative or absolute) and, if so, whether it isof concern
• who have persisting erectile dysfunction and who do
not have contraindications should be offered sildenafil 25–100 mg
• who do not respond to sildenafil should be assessed for
the general and specific factors that might cause orworsen erectile dysfunction and that are amenable totreatment (such as depression, anxiety, vascular disease,diabetes and taking medicines that may cause erectiledysfunction). Other specific treatments such as alprostadilor intra-cavernosal papaverine should then be considered.
1.7.18.2 Women with MS should be asked whether they experience
sexual dysfunction (such as failure of arousal or lubricationor anorgasmia) and, if so, whether it is of concern.
1.7.18.3 Women with sexual dysfunction should be assessed for the
general and specific factors that might cause or worsensexual dysfunction and that are amenable to treatment (suchas depression, anxiety, vascular disease, diabetes and takingmedicines that may cause sexual dysfunction).
1.7.18.4 Every person (or couple) with MS should be asked sensitively
about, or given the opportunity to remark upon, anydifficulties they may be having in establishing and/ormaintaining wanted sexual and personal relationships; theyshould be offered information about locally availablecounselling and supportive services.
1.7.18.5 Every person (or couple) with persisting sexual dysfunction
should be offered the opportunity to see a specialist (withparticular expertise in sexual problems associated withneurological disease) and offered, as appropriate, advice onlubricants and the use of sexual aids, and other advice toameliorate their sexual dysfunction.
1.7.19 Pressure
A pressure ulcer (decubitus ulcer or pressure sore) is an area of
broken skin that is secondary to unrelieved pressure on the skin,often exacerbated by slight trauma – for example, when beingmoved. Pressure ulcers may range from minor breaks to very largedeep areas of dead tissues extending over many square centimetresand down to bone. Once present they can be difficult to heal, andcan cause general malaise and worsening of most impairments, andthey carry a risk of generalised or localised infections. Many peoplewith MS are at high risk of developing pressure ulcers because theymay have, for example, limited mobility, impairment of sensoryfunctioning and reduced cognitive function. Most pressure ulcers canbe avoided by good anticipatory management. (See also the NICEClinical Guideline on prevention of pressure ulcers [referenced inSection 6].)
1.7.19.1 Every person with MS who uses a wheelchair should be
assessed for their risk of developing a pressure ulcer. Theindividual should be informed of the risk, and offeredappropriate advice.
1.7.19.2 Every person with MS who uses a wheelchair daily should be
assessed by a suitably trained person, whenever they areadmitted to hospital (for whatever reason), for their needfor pressure-relieving devices and procedures. Theassessment should be clinical, specifically taking into accountthe risk features associated with MS, and not simply therecording of a pressure ulcer risk score; it should lead to thedevelopment and documentation of an action plan tominimise risk, including:
• documentation of agreed manual handling techniques.
1.7.19.3 Every person with MS who is provided with a wheelchair by
a statutory organisation (NHS or social services), or whose wheelchair seating is being reassessed, should specifically be considered for pressure-relieving procedures and devices – not only in the wheelchair, but in all other activities, especially transfers and sleeping.
1.7.19.4 For every person with MS considered to be at risk on their
• an appropriate specialist mattress should be provided
• regular turning should not be depended upon as a policy
• the skin areas at risk should be inspected to ensure that
1.7.19.5 If a pressure ulcer occurs, it should be considered an adverse
event worthy of investigation, and advice should be soughtfrom a specialist service.
1.7.19.6 Any person with MS who develops a pressure ulcer should be
nursed on a low-loss mattress (while in bed).
The ulcer should be dressed according to appropriate local
Complementary therapies
1.7.20.1 People with MS should be informed that there is some
evidence to suggest that the following items might be ofbenefit, although there is insufficient evidence to give morefirm recommendations:
1.7.20.2 A person with MS who wishes to consider or try an
alternative therapy should be recommended to evaluate anyalternative therapy themselves, including the risks and thecosts (financial and inconvenience).
1.7.20.3 A person with MS should be encouraged to discuss any
alternative treatments they are considering, and to informtheir doctors and other professionals if they decide to use any.
Notes on the scope of the guidance
All NICE guidelines are developed in accordance with a scopedocument that defines what the guideline will and will not cover. Thescope of this guideline was established at the start of thedevelopment of this guideline, following a period of consultation; itis available from www.nice.org.uk/article.asp?a=15233
In summary, the aim was to develop a guideline that is relevant toadults of all ages with MS, and considers the full range of care thatshould be routinely available from the NHS, including appropriateuse of mainstream pharmacological therapy, physical therapy,rehabilitation and psychosocial treatments.
The guideline was developed for the NHS and, although it commentson the interface with other sectors, it does not consider them in detail. Implementation in the NHS In general
Local health communities should review their existing practice formultiple sclerosis against this guideline as they develop their LocalDelivery Plans. The review should consider the resources required toimplement the recommendations set out in Section 1, the people andprocesses involved, and the timing over which full implementation isenvisaged. Priorities for implementation are set out at the start ofthis document. It is in the interests of people with MS that theimplementation timeline is as rapid as possible.
Relevant local clinical guidelines, care pathways and protocols shouldbe reviewed in the light of this guidance and revised accordingly.
This guideline should be used in conjunction with the developingNational Service Framework for long-term neurological conditions,which will define the broader context of neurological services.
Suggested audit criteria are listed in Appendix D.
4 Research recommendations
The following research recommendations have been identified forthis NICE guideline, not as the most important researchrecommendations, but as those that are most representative of thefull range of recommendations. The Guideline Development Group’sfull set of research recommendations is detailed in the full guidelineproduced by the National Collaborating Centre for Chronic Conditions (see Section 5). Epidemiology of relapses, impairments and activity limitations
There should be a prospective study on an epidemiologicallysound defined population to establish reasonable estimates of:
• the frequency of relapses sufficient to cause increased
• the prevalence and yearly incidence of the most common
impairments described in this guideline document
• the prevalence and yearly incidence of the most common
limitations on activity including work described in thisdocument
• the direct and indirect costs of the condition and how they
relate to levels of limitation on activity, including not onlyNHS direct costs but all direct costs. Diagnosing MS
There should be a prospective study on an epidemiologicallysound population to investigate the most cost-effectiveprotocols for investigating people presenting with(potential) MS to establish:
• the sensitivity and specificity of MRI scanning in people
with different levels of clinical diagnostic certainty
• the role of other investigations in confirming or positively
• the prognostic value of MRI scan information over 5 years. Rehabilitation assessment protocols
There should be a programme of research to develop andevaluate protocols, procedures or data-collection tools thatcan be used by any profession to:
• identify the probable presence of most common
• quantify approximately activity performance in personal
• identify areas of activity limitation that are present in
Specialist neurological rehabilitation services
A programme of research into the relative costs (direct andindirect) and benefits (direct and indirect) should beundertaken comparing:
• current rehabilitation practice with rehabilitation given by
a specialist neurological rehabilitation service
• primarily inpatient with primarily outpatient or home-
Acute relapse management – methylprednisolone and rehabilitation
A programme of research should investigate themanagement of acute relapse including comparing the costsand benefits associated with policies of:
• oral methylprednisilone against intravenous
• hospital admission with early discharge once rehabilitation
has started and support has been arranged against homecare with rapid response care and rehabilitation input(with steroids if indicated). Disease-modifying drugs
A programme of research into disease-modifying treatmentssponsored and run by an organisation independent of eitherhealth purchasers or pharmaceutical companies should be setup to investigate interferon beta, glatiramer acetate, linoleicacid and azathiaprine (and any other newly licensedmedicines) in terms of:
• benefits, specifically in terms of activity performance
• costs, including the medicines and all associated
• dis-benefits, both immediate side effects and longer-term
• effects of stopping treatment after 2 and 4 years.
Relationship between impairments and limitations in activities
A programme of research extending over many years shouldbe instigated to investigate the nature and extent ofrelationships between impairments and activities and howthey change over time. guideline
NICE originally commissioned the Royal College of Physicians (RCP)and the Chartered Society of Physiotherapy (CSP) to develop thisguideline. When the National Collaborating Centre for ChronicConditions was formed in April 2001, it assumed the managementresponsibility, but with continuing leadership from the executiveleads from the RCP and CSP. The Centre established a GuidelineDevelopment Group, which reviewed the evidence and developed the recommendations. The full guideline, Multiple Sclerosis – National Clinical Guidelines for NHS Management in Primary andSecondary Care, is published by the National Collaborating Centre for Chronic Conditions; it is available on its website(www.rcplondon.ac.uk/pubs/books) and on the website of theNational Electronic Library for health (www.nelh.nhs.uk). The members of the Guideline Development Group are listed inAppendix B. Information about the Institute’s Guideline Review Panelis given in Appendix C.
The booklet The Guideline Development Process – Information forthe Public and the NHS has more information about the Institute’sguideline development process. It is available from the Institute’swebsite and copies can also be ordered by telephoning 0870 1555 455 (quote reference N0038). Related NICE guidance
National Institute for Clinical Excellence (2002) Multiple sclerosis –beta interferon and glatiramer acetate for the treatment of multiplesclerosis. NICE Technology Appraisal Guidance No. 32. London:National Institute for Clinical Excellence. Available from:www.nice.org.uk
National Institute for Clinical Excellence (2002) Guidance on the useof computerised cognitive behavioural therapy for anxiety anddepression. NICE Technology Appraisal Guidance No. 51. London:National Institute for Clinical Excellence. Available from:www.nice.org.uk
National Institute for Clinical Excellence (2003) Infection control. Prevention of healthcare-associated infection in primary andcommunity care. NICE Clinical Guideline 2. London: National Institutefor Clinical Excellence. Available from www.nice.org
National Institute for Clinical Excellence (2003) Pressure ulcerprevention. Pressure ulcer risk assessment and prevention, includingthe use of pressure-relieving devices (beds, mattresses and overlays)for the prevention of pressure ulcers in primary and secondary care. NICE Clinical Guideline 6. London: National Institute for ClinicalExcellence. Available from www.nice.org
NICE is in the process of developing the following guidance.
• Anxiety: management of generalised anxiety disorder and panic
disorder (with or without agoraphobia) in primary, secondary andcommunity care. Clinical guideline. (Publication expected June2004)
• Cannabinoids (cannabis derivatives) for the treatment of the
symptoms of multiple sclerosis. Technology appraisal. (Publicationdate to be confirmed)
• Depression: the management of depression in primary and
secondary care. Clinical guideline. (Publication expected May 2004)
• Pressure ulcers: the management of pressure ulcers in primary and
secondary care. Clinical guideline. (Publication expected May 2005)
The process of reviewing the evidence is expected to begin 4 yearsafter the date of issue of this guideline. Reviewing may begin earlierthan 4 years if significant evidence that affects the guidelinerecommendations is identified sooner. The updated guideline will beavailable within 2 years of the start of the review process.
A version of this guideline for people with multiple sclerosis, theirfamilies and carers and the public is available from the NICEwebsite (www.nice.org.uk) or from NHS Response Line (telephone0870 1555 455 and quote reference number N0367 for an Englishversion and N0368 for a version in English and Welsh).
Appendix A: Grading scheme
The grading scheme and hierarchy of evidence used in this guideline(see Table) is adapted from Eccles and Mason (2001).
category II evidence, or
extrapolated recommendation from category Ievidence
category III evidence, or
extrapolated recommendation from category I or IIevidence
category IV evidence, or
extrapolated recommendation from category I, II or IIIevidence
Evidence from meta-analysis of randomised controlledtrials
Evidence from at least one randomised controlled trial
Evidence from at least one controlled study withoutrandomisation
Evidence from at least one other type of quasi-experimental study
Evidence from non-experimental descriptive studies, suchas comparative studies, correlation studies andcase–control studies
Evidence from expert committee reports or opinionsand/or clinical experience of respected authorities
Adapted from Eccles M, Mason J (2001) How to develop cost-conscious guidelines. HealthTechnology Assessment 5 (16)
Appendix B: The Guideline Development Group Sarah Broughton Senior Occupational Therapist, Royal Berkshire and Battle NHS Trust Angela Davies-Smith MS First Research Physiotherapist, Bristol General Hospital Jane Ingham Project Manager, National Collaborating Centre for Chronic Conditions Michael Johnson Consultant Neurologist, Leeds Teaching Hospitals NHS Trust Christine Jones Chief Executive, Multiple Sclerosis Trust John Keen General Practitioner, Bedford Park Surgery, Chiswick, London Glynn McDonald Policy and Campaigns Manager, Multiple Sclerosis Society Lindsay McLellan Retired Consultant Physician, Society for Rehabilitation Research Caroline Main Systematic Reviewer, NHS Centre for Reviews and Dissemination, University of York Susan O’Meara Systematic Reviewer, NHS Centre for Reviews and Dissemination, University of York Bernie Porter Nurse Consultant in Multiple Sclerosis, National Hospital for Neurology and Neurosurgery – University College London Hospital Trust David Pruce (Group Leader) Director of Practice and Quality Improvement, Royal Pharmaceutical Society of Great Britain Rob Riemsa Systematic Reviewer, NHS Centre for Reviews and Dissemination, University of York Jennifer Roberts Health Economist, School of Health and Related Research, University of Sheffield Hasina Shaikh Information Scientist, National Collaborating Centre for Chronic Conditions Derick Wade (Clinical Advisor) Professor of Neurological Disability, Nuffield Orthopaedic Centre NHS Trust Penny Whiting Systematic Reviewer, NHS Centre for Reviews and Dissemination, University of York Consensus Reference Group
To support the development of this guideline, a Consensus ReferenceGroup (CRG) was formed. The CRG met early in the developmentprocess to ensure that the aims and the clinical questions addressedby the guideline were appropriate. The CRG met again at the end ofthe process to review the recommendations drafted by the GuidelineDevelopment Group. The group used formal consensus techniques intheir consideration of clinically important areas where there wasinsufficient evidence or disagreement over the interpretation of theevidence. Jacqui Bradburn Senior Speech and Language Therapist, North Bristol NHS Trust, Frenchay Hospital, Bristol David Chadwick (Group Leader) Professor of Neurology, University of Liverpool Bernice Chiswell Senior Dietician, Bedford Hospital NHS Trust Louise Earll Head of Health Psychology, Gloucestershire Hospitals NHS Trust Jane Hill General Practitioner, Long Melford Practice, Long Melford, Suffolk Alan Thompson Professor of Clinical Neurology and Neurorehabilitation, National Hospital for Neurology and Neurosurgery - University College London Hospital Trust Chris Ward Professor of Rehabilitation Medicine and Neurology, University of Nottingham; Head of Division Rehabilitation and Ageing, Southern Derbyshire Acute Hospital Nicki Ward Lecturer Practitioner, University of Central England Asim Wasti Consultant, Sheffield Teaching Hospitals NHS Trust Chris Watts Director of Public Health, Lewisham Primary Care Trust Appendix C: The Guideline Review Panel
The Guideline Review Panel is an independent panel that overseesthe development of the guideline and takes responsibility formonitoring its quality. The Panel includes experts on guidelinemethodology, health professionals and people with experience of theissues affecting patients and carers. The members of the GuidelineReview Panel were as follows. Dr Bernard Higgins (Chair) Consultant Chest Physician Freeman Hospital Newcastle upon Tyne Dr Robert Higgins Consultant in Renal and General Medicine University Hospitals Coventry and Warwickshire Dr Marcia Kelson Director, Patient Involvement Unit for NICE London Dr Peter Rutherford Senior Lecturer in Nephrology, Medical Director University College of Wales College of Medicine Dame Helena Shovelton Chief Executive British Lung Foundation Fiona Wise Acting Director of Modernisation Bedfordshire and Hertfordshire Strategic Health Authority Dr John Young Medical Director MSD Limited Definitions and other comments Exceptions: interpr
rehabilitation services are limited. Criterion: data items needed es for auditing MS services in the NHS echnical detail on the criteria for audit ecommendation Appendix D: T Suggested measur Key priority for implementation, Definitions and other comments Exceptions: interpr Criterion: data items needed ecommendation Key priority for implementation, Definitions and other comments Exceptions: interpr Criterion: data items needed ecommendation Key priority for implementation, Definitions and other comments Exceptions: interpr Criterion: data items needed ecommendation Key priority for implementation, Definitions and other comments Exceptions: interpr Criterion: data items needed ecommendation Key priority for implementation, Appendix E: Supplementary information Table 1 Principles of good communication in healthcare Principle In any communication the healthcare professional should:
Communicate in a suitable environment, usually a
quiet area or room free from distraction or interruption
Seek agreement from the person with MS that anyone
present can be there and ensure that as far as possible
Start by asking what the person knows or believes
Establish the nature and extent of the information that
Consider carefully the balance between the benefits
and the risks associated with giving each item of
Tailor the communication to the person’s:
• communicative and cognitive abilities• culture
Limit information given to that within their own
knowledge, referring on to others as necessary for
Clarify specifically any options and choices the person
• likely outcomes of each choice• benefits and risks of each choice
Offer back-up with information being given:
• in different ways (e.g. written leaflets, tapes)
• by different people (e.g. specialist nurse)• at another time (e.g. follow-up appointment)
Inform the person with MS about any recommended
local or national sources of further information,
including employment and voluntary sector sources
Consider need for emotional support during process
especially if the information might be stressful, and
arrange emotional support if needed.
Document in notes and inform other healthcare staff
closely involved what has been communicated,
Table 2 Review checklist
This is not a list of questions to be asked of every person with MS onevery occasion. It is a list to remind clinicians of the wide range ofpotential problems that people with MS may face, and which shouldbe actively considered as appropriate. A positive answer should lead tomore detailed assessment and management. (See Sections 1.6 and 1.7.)
Initial question
It is best to start by asking an open-ended question such as:
"Since you were last seen or assessed has any activity you used to undertake beenlimited, stopped or affected?"Activity domains
Then, especially if nothing has been identified, it is worth asking questionsdirectly, choosing from the list below those appropriate to the situation based onyour knowledge of the person with MS:
"Are you still able to undertake, as far as you wish:
vocational activities (work, education, other occupation)?
getting about (either by walking or in other ways) and getting in and out ofyour house?
controlling your environment (opening doors, switching things on and off,using the phone)?"
If restrictions are identified, then the reasons for these should be identified as faras possible considering impairments (see below), and social and physical factors(contexts). Common impairments
It is worth asking about specific impairments from the list below, again adaptingto the situation and what you already know:
"Since you were last seen have you developed any new problems with:
your sexual function or partnership relations?
how you get on in social situations?"
Final question
Finally, it is always worth finishing with a further open-ended question:
"Are there any other new problems that you think might be due to MS thatconcern you?".Table 3 Summary of the criteria suggested by the Association of British Neurologists and agreed by the Department of Health to determine eligibility for treatment using interferon beta and glatiramer acetate for people with MS within the ‘risk-sharing scheme’1
People with relapsing/remitting MS should be offered interferon beta (any type) provided that the following four conditions are met: •
can walk 100 metres or more without assistance
have had at least two clinically significant relapses in the past 2 years
do not have contraindications (see specific Summary of ProductCharacteristics [SPC] for details)
People with relapsing/remitting MS should be offered glatiramer acetate provided that the following four conditions are met: •
can walk 100 metres or more without assistance
have had at least two clinically significant relapses in the past 2 years
do not have contraindications (see SPC for details)
People with secondary progressive MS should be offered interferon beta (any type licensed for this use) provided the following conditions are met: •
can walk 10 metres or more with or without assistance
have had at least two disabling relapses in the past 2 years
have had minimal increase in disability due to gradual progression overthe past 2 years
do not have contraindications (see specific SPC for details)
People with MS offered treatment with interferon beta should have the following stopping criteria discussed and agreed before starting treatment: •
occurrence of two disabling relapses within a 12-month period
secondary progression with an observable increase in disability over a 6-month period
loss of ability to walk, with or without assistance, that has persisted forlonger than 6 months
People with relapsing–remitting MS offered treatment with glatiramer acetate should have the following stopping criteria discussed and agreed before starting treatment: •
occurrence of two disabling relapses within a 12-month period
loss of ability to walk, with or without assistance, that has persisted forlonger than 6 months.
1 For further details see Health Service Circular 2002/004
(www.doh.gov.uk/pricare/drugsmultiplesclerosis.htm)
Appendix F: Diagnosis of multiple sclerosis Guidelines for the accurate diagnosis of MS according to the McDonald criteria Some general points
1. The diagnosis should be made by an experienced clinician with expert
knowledge of MS and similar neurological conditions.
2. The prior probability that the individual has MS depends on factors such as
age, ethnicity and geographical location.
3. Objective evidence of dissemination in time and space of lesions typical of MS
is mandatory, as is the exclusion of other, better explanations for the clinicalfeatures.
4. Historical reports of symptoms may suggest previous episodes of
demyelination, but cannot be used without objective evidence to satisfy therequirement of lesions disseminated in time and space.
5. MS can be diagnosed on purely clinical evidence of lesions separated in time
6. Radiological (MRI) and laboratory evidence is desirable and may be essential
where clinical evidence is insufficient for a secure diagnosis.
7. The choice of investigation will be determined by the clinical situation – for
example, a delayed visual evoked potential is of value in a person with aspinal cord lesion but is of little value in a person with optic neuritis.
8. MRI is less useful in older people and in other inflammatory conditions such as
acute encephalomyelitis where its specificity is lower. MRI is not applicable inpeople with metallic foreign bodies, pacemakers, etc. or in those who cannottolerate the procedure.
McDonald et al. (2001) Recommended diagnostic criteria for MS. Annals of Neurology50:121–7
elevated IgG index) or
Has had at least one further clinical attack, at least 30 days
after onset of first attack. Does the examination reveal
evidence of more than a single lesion in the CNS?
emitting MS Relapsing–r
On the basis of the history of symptoms, is this the first attack of presumed demyelination?
Brain MRI scan shows dissemination in time
1 Gd-enhancing lesion demonstrated in a scan done at
least 3 months following onset of a clinical attack at a site
In absence of Gd-enhancing lesions at 3-month scan,
follow-up scan after an additional 3 months shows a
Brain MRI scan shows dissemination in time
essive lesion)
1 Gd-enhancing lesion demonstrated in a scan done at
least 3 months following onset of a clinical attack at a site
In absence of Gd-enhancing lesions at 3 month scan,
follow-up scan after an additional 3 months shows
essive MS Primary-pr
No attacks but progression from onset with 1 objective lesion
Exclude other causes of symptoms (e.g. compr
(oligoclonal IgG bands in CSF and not serum
Brain MRI scan shows dissemination in space
by 9 or more T2 hyperintense brain lesions
positive VEP with fewer than 4 brain lesions
Perform lumbar punctur Perform brain MRI scan visual evoked potentials NHS National Institute for Clinical Excellence National Institute for Clinical Excellence
11. SENSITIVITY Most of the issues discussed in this section may appear to besimply matters of taste. However, as is nearly always the case,they go beyond the purely subjective question of our ownreaction and imply an attitude to others that appears to place thewriter and the views expressed in conflict with the liberal,inclusive values that define the Guardian. One of the principalvalues is t
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