Multiple Sclerosis

V
European-wide
Recommendations on
Rehabilitation for People
affected by Multiple Sclerosis
EMSP - European MS Platform /
R.I.M.S. - Rehabilitation in Multiple Sclerosis
October 2004
Consensus Paper

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The Recommendations in this report are the result of intensive collaboration
among the foremost experts in multiple sclerosis rehabilitation in Europe, and
cooperation between the European MS Platform and RIMS (Rehabilitation
in Multiple Sclerosis) and we congratulate wholeheartedly the authors. We
would like to thank in particular Prof. Jrg Kesselring, Switzerland, Prof Alan
Thompson, UK, Prof. Mario Battaglia, Italy, and Dr Pierre Ketelaer, Belgium for
their excellent contributions.
The report fills a significant gap in the literature to date on ensuring Europeans
affected by multiple sclerosis get access to the best possible rehabilitation
services at every stage of their illness.
It is a highly relevant blue print for a wide range of readers: policy makers, the
medical profession, the corporate sector, volunteers, families and of course
people affected by MS themselves. Nothing can empower persons with MS more
than access to clear, concise information about their illness, the standards of
rehabilitation services they have the right to expect, and the likely impact that
this will have on their quality of life.
The Recommendations, endorsed by every MS society in Europe are a major
breakthrough, and a timely follow up to the political impetus created by the
adoption in December 2003 of a European Parliament report and resolution on
the rights of people affected by multiple sclerosis in the European Union. We
believe that these Recommendations will form an important pillar of a European
Code of Good Practice called for by the European Parliament that we shall be
presenting to the European Health Council in the near future.
The Framework Employment Directive addressing employment discrimination on
the grounds of disability is another important legal instrument that we can use
in concert with the Rehabilitation Recommendations, particular those relating
to the work place, employment and work retention. The Recommendations,
if properly implemented will go a long way towards assuring reasonable
accommodation for workers with MS throughout the European Union, and will
be an important benchmark in assessing whether discrimination has taken place.
The European MS Platform and RIMS are committed to publicising widely this
report. We urge you as the individual reader to translate the Recommendations
in your own daily life - as a user campaigning for better services, as a provider
striving towards high quality service provision, or as a decision-maker advancing
policy in the area of MS rehabilitation.
Peter Kauffeldt
EMSP President
Dr Claude Vaney
President of RIMS
European-wide Recommendations on Rehabilitation
for people affected by Multiple Sclerosis
Definition 8
The Person with MS 9
MS Management 10
Needs of persons with MS 11
Definition 16
Efficacy 16
Rehabilitation at different stages 17
Assessment and goals 18
The interdisciplinary approach 19
Rehabilitation team 19
Service delivery 20
Physiotherapy 24
Physicology 26
Rehabilitation in cognitive impairment 28
Rehabilitation of bladder, bowel and sexual disorders 30
Rehabilitation in speech, language and swallowing disorders 33
Occupational therapy 35
Vocational rehabilitation 36
Rehabilitation nursing 37
Social counselling 38
40
General items 44
Specific items 45
The process for establishing the Recommendations 50
Rehabilitation services throughout Europe 54
Malta declaration by EMSP - 2003 58
European Multiple Sclerosis Platform (EMSP) 60
Rehabilitation in Multiple Sclerosis (RIMS) 62
Multiple Sclerosis
Rehabilitation in MS
Rehabilitation interventions
References
Appendix
Contents
Final recommendations
7
Multiple Sclerosis
8 Multiple Sclerosis
Definition
Multiple sclerosis (MS) is a complex, chronic, neurological disease, affecting the
insulation surrounding nerve fibres (axons) of the Central Nervous System (CNS)
and the axons themselves. The coating called myelin, protects nerve cells and
allows the efficient transmission of electrical impulses along nerve fibres.
The exact cause of MS is not known, but it is thought to be an autoimmune
disease in which an immune system dysfunction produces an inflammatory
attack directed against the myelin in a process called demyelination.
The results of demyelination are plaques or scars along the myelin sheath that
interfere with nerve conduction. Conduction failure in demyelinated fibres
derives not only from a loss of myelin, but also from the subsequent molecular
damage of the fibre itself, that may progressively degenerate.
This axonal degeneration is the structural basis of the permanent impairment
caused by the disease. The most common symptoms include, among others, loss
of vision, double vision, stiffness, weakness, imbalance, loss of co-ordination,
numbness, pain, problems with bladder and bowel control, fatigue, speech and
swallowing disorders, sexual difficulties, emotional changes and intellectual
impairment. The type and number of symptoms vary greatly from one individual
to another, depending on where the damage occurs in the brain or spinal cord.
The disease is the most common cause of neurological disability affecting
people in their productive years, between 15 and 55 years of age.
It is a disorder of the CNS that progresses slowly and often unevenly with
different patterns: the lesions occur not only in multiple areas of the CNS but
also in multiple events over time. As the result, the course of MS varies from
one person to another and different episodes of demyelination may develop an
unpredictable, life-long progression of complex symptoms.
The Person with MS
There are about 400,000 persons with MS in Europe. From the moment that MS
is diagnosed, the person is transformed into a person living with MS forever.
Even in the absence of symptoms, this person lives with the knowledge that
he/she could be unpredictably impaired. In the relapsing-remitting form MS
may debilitate a person temporary and after the first attacks the person can
restore his/her functions, but later on he/she adds one permanent impairment to
another, gradually worsening the disability. The interval between one attack and
the following one can vary from weeks to years.
The resulting disability can greatly differ from one person to another.
The relapsing remitting form involves 60 - 65% of MS patients, part of
which becomes secondary progressive (20 25% of the patients), while the
primary progressive form affects approximately 15% of them. In the latter
form the illness progresses quite rapidly without remission and with a resulting
severe disability. As MS is the major neurological disease in young adults, life
expectancy is long and there are really few conditions that have a greater social
and economic impact than MS.
Many will bear their disability for decades.
As the disease varies in severity it allows some persons to live with only a
minimal impairment whereas many others become severely disabled.
For those whose disease is more debilitating, living with MS is the major
challenge of their life.
All aspects of their lives are involved: daily activities, personal relationships,
family life, work and social participation.
Repeatedly over time, the individual has to adjust to the varying disabling
consequences of the disease, to adapt and readapt to MS.
Although during the last few years issues surrounding diagnosis and therapy are
changing, there is no treatment yet, curing the disease.
So people facing this chronic and progressive illness experience different
phases of coping, which means developing the ability to adapt to a new,
disadvantaged situation in the most satisfactory way possible.
Indeed, persons with MS and their carers must be provided with every possible
assistance to manage their disease adaptation.
Multiple Sclerosis Management
Although MS diagnosis is faster today than in the past it often presents
difficulties. The clinical neurological examination together with Magnetic
Resonance Imaging (MRI), and other tests that help to confirm the suspicion of
MS, are the whole set of tools that establish the diagnosis.
When, at first, not all the criteria for demonstrating MS are met, the person may
be classified as having possible MS.
Additional features of the disease may become evident over time.
Although there is still no drug that can cure MS, treatments are now available
which can modify the course of the disease.
The scientific community continues its efforts to find a cure for MS and to
restore the damage in the nervous tissues.
A great deal of progress towards more effective treatments has been made in
recent years, developing therapies, the so-called disease modifying drugs, that
Needs of persons with MS
The needs, resources and support required by persons with MS have been
examined on an international level (Kraft, Freal and Corytrell 1986, Stolp-Smith
1999, Kersten et al. 2000, Hubert and Douglas 2000, Benbow & Koopman 2003)
and identified into six categories of needs: physical, psychological, accessibility,
financial, employment/leisure and information.
Some of the studies were conducted after developing a survey on patient needs
assessment in order to improve services offered to persons with MS.
It is important to appreciate that needs as perceived by the person with MS, the
carer and the professionals may differ considerably and it is essential that when
developing the assessment of need schedules, these differences are taken into
account. The absence of a cure for MS as well as the fact that it is a chronic and
frequently progressive disorder, an ever-changing and unpredictable process,
means that the need for care will be different at different stages of the disease
and continue for many decades.
Counselling and vocational needs appear less met and not correlated with
increasing disability (Kraft 1987).
For simplification, the course of MS may be divided into four stages although
not all cases go through the entire course:
- an initial stage at the moment of the diagnosis
- an early stage with a mild degree of disability
- a later stage with a moderate degree of disability
- an advanced stage with severe disability.
The identification of needs depends on the clinical stage of the disease and the
degree of disability. Each stage poses its own difficulties related to specific life
situations and expressed needs (Freeman J. et al., 1997).
Initial stage
At this stage the needs expressed are:
- the provision of a clear and certain diagnosis
- the clarity with which the information should be communicated to the
person with MS
- the support and counselling which the person should subsequently receive.
The process of initial diagnosis is often not an easy time to ask questions or
absorb information
- the on-going availability for the person of information regarding the
disease, its effects and potential impact on the individual, the family and
the social environment
- continuing education to enable knowledge and experience of life with MS
to be transmitted by professionals and other persons with MS.
The bitterness and resentment resulting from the patient accidentally
discovering the diagnosis or the feeling of being discarded by their doctor may
have a profound effect on the patients subsequent ability to trust and accept
advice and to cope with this condition. It is also important that the patient
knows where to find further information, though often this may not be availed
for some time. In some countries educational programmes have been instituted
to address this area (Verdoodt, 1991).
lessen the number and severity of attacks and the progression of the disease.
Besides, there are many treatments and approaches that may reduce the burden
of the symptoms.
Treatments in MS can be grouped into:
The development of new symptoms, or the worsening of old ones, may
indicate that a new attack is coming. At that time, the new occurring
patches of inflammation can be reduced by high-doses of steroid therapy.
As not all episodes of new symptoms require this treatment, therapy
changes must be chosen on an individual basis by the neurologist.
Concerning the underlying disease, there are drugs called
immunomodulating agents that can reduce the progression of the disease
and, as a consequence, the severity of disability over the years in cases
presenting a relapsing-remitting pattern.
They are considered to be more effective if used early as the first
symptoms appear. Interferon beta and glatiramer acetate are agents
of this kind. For persons with a progressive and disabling form of the
disease, immunosuppressive therapies are available: they are mitoxantrone,
azatioprine and others. Both categories of drugs, immunomodulating and
immunosuppressive agents, reduce the altered reaction of the immune
system on which the mechanism of the disease is based.
This therapy may prevent relapses and/or lessen the severity of the attacks.
At the same time, one or more symptoms, produced by the damage already
done to the myelin sheath in different areas, can affect the quality of life of
the person with MS. So the management of symptoms is as important as
the treatment of the disease.
This is based both on drugs and on rehabilitation strategies. Even if these
treatments do not modify the disease evolution and progression, they have
a primary importance for the individuals quality of life.
Rehabilitation is a fundamental approach for reducing disability, to prevent
complications of the disease and to improve the individuals independence.
Rehabilitation is required in many different kinds of impairment: motor
disorders, bladder and bowel dysfunction, communication and swallowing
disorders, cognitive impairment. Rehabilitation for persons with MS is
directed first towards the restoration of functions and activities that have
become limited.
When a function is damaged forever, rehabilitation tries to teach persons
with MS to maximise their remaining abilities, to improve mobility, to allow
the activities of daily life, and to optimise social participation.
management of the acute attack
treatment of the underlying disease
rehabilitation and management of symptoms
11 Multiple Sclerosis 10 Multiple Sclerosis
Needs of persons with MS
The needs, resources and support required by persons with MS have been
examined on an international level (Kraft, Freal and Corytrell 1986, Stolp-Smith
1999, Kersten et al. 2000, Hubert and Douglas 2000, Benbow & Koopman 2003)
and identified into six categories of needs: physical, psychological, accessibility,
financial, employment/leisure and information.
Some of the studies were conducted after developing a survey on patient needs
assessment in order to improve services offered to persons with MS.
It is important to appreciate that needs as perceived by the person with MS, the
carer and the professionals may differ considerably and it is essential that when
developing the assessment of need schedules, these differences are taken into
account. The absence of a cure for MS as well as the fact that it is a chronic and
frequently progressive disorder, an ever-changing and unpredictable process,
means that the need for care will be different at different stages of the disease
and continue for many decades.
Counselling and vocational needs appear less met and not correlated with
increasing disability (Kraft 1987).
For simplification, the course of MS may be divided into four stages although
not all cases go through the entire course:
- an initial stage at the moment of the diagnosis
- an early stage with a mild degree of disability
- a later stage with a moderate degree of disability
- an advanced stage with severe disability.
The identification of needs depends on the clinical stage of the disease and the
degree of disability. Each stage poses its own difficulties related to specific life
situations and expressed needs (Freeman J. et al., 1997).
Initial stage
At this stage the needs expressed are:
- the provision of a clear and certain diagnosis
- the clarity with which the information should be communicated to the
person with MS
- the support and counselling which the person should subsequently receive.
The process of initial diagnosis is often not an easy time to ask questions or
absorb information
- the on-going availability for the person of information regarding the
disease, its effects and potential impact on the individual, the family and
the social environment
- continuing education to enable knowledge and experience of life with MS
to be transmitted by professionals and other persons with MS.
The bitterness and resentment resulting from the patient accidentally
discovering the diagnosis or the feeling of being discarded by their doctor may
have a profound effect on the patients subsequent ability to trust and accept
advice and to cope with this condition. It is also important that the patient
knows where to find further information, though often this may not be availed
for some time. In some countries educational programmes have been instituted
to address this area (Verdoodt, 1991).
lessen the number and severity of attacks and the progression of the disease.
Besides, there are many treatments and approaches that may reduce the burden
of the symptoms.
Treatments in MS can be grouped into:
Key themes responding to the needs are:
- continuity of service provision
- provision of support and informed advice about relationships, employment, symptoms and
impairment, housing and financial planning
- access to appropriate treatment and management option.
As MS affects young adults, often supporting young families and in the early
stages of their career, this chronic disabling process carries with it major socio-
economic implications which must be addressed.
Later stage
This group of persons with MS has established impairment resulting in both
disability and handicap. They need to maximise functional independence by
minimising disability and handicap and maintaining as long as possible their
role in the family, workplace and community.
This will involve inpatient and outpatient rehabilitation services linking with
and supporting community care. If possible, persons with MS express their
preference for services provided on an outpatient basis by a multi-disciplinary
team. Accurate assessment should take into account the awareness of the
impact of the illness on family, employer and carer.
Specific coping strategies need to be taught to the person and their carer with
appropriate expertise and monitoring.
The variety of interacting problems requires the expertise of a wide range of
specialists with an interdisciplinary approach.
Key themes
- responsiveness to need in relation to significant changes in ability and accrued impairment
- access to and location of professional services
- access to multidisciplinary expertise in symptom and disability management and treatment
- communication and co-ordination between service providers and care agencies
- empowerment of persons with MS and their carers to enable them to take a partnership role in
their disease management and treatment.
Persons with MS face a startling array of recurring barriers to employment,
education and transportation.
The lack of adequate, comfortable and accessible transportation and accessible
work places has contributed to an unemployment rate among persons with MS
that is much higher than the average.
Persons with MS want to be able to assume their full rights as citizens.
The application of a special law, prohibiting discrimination on the basis of
disability in employment, state and local government services, transportation
provided by public and private entities (Ontario Social Action Committee 2001)
is highly recommended.
People with low income, benefiting only from disability allowances have major
financial difficulties to face the additional expenses related to their disability.
Technology, including any item that could be useful for maintaining or
Early stage
During this stage the person with MS suffers occasional relapses of varying
severity (approximately one every two years) but usually recovers.
The main person concern may focus on the fear of becoming disabled.
improving functional capabilities will provide many appropriate opportunities
for persons with MS (Blake & Bodine, 2002).
Advanced stage
At this stage persons with MS develop a severe disability and become dependent
in both mobility and daily activities; they experiment particular problems.
The variety and severity of problems mean that persons with MS become a huge
burden at home and more specifically on their carers.
Maintaining the person with MS at home and in the community with
appropriate support and treatment for as long as possible is a basic need at this
stage. When this ability and willingness of the carer to look after the patient is
no longer achievable, depending on the non-availability of support and relief at
a community level, a regular respite care should be offered.
If the temporary respite care can be organised selectively, without acute
requirement for crisis management, it should be planned to correspond with a
special holiday or other activity for the carer.
High priority should be attributed to the acknowledgment of the needs of the
carers. Together with formal (paid) care in most countries informal care has
been reported as the most important source of home help, representing up to
70% of an MS persons care (Carton et al.,1998).
Expanding support by professional and informal carers will alleviate the time of
caring and support in specific everyday tasks and surveillance.
An important need is also to teach the carers how to cope with their physical
tasks and best handle any cognitive or behavioural problem which may arise.
The installation of appropriate equipment in the house, such as environmental
controls and technical appliances is needed to allow the MS person to be less
dependent and lessen the burden on the spouse and the family.
Key themes:
- provision of appropriate respite care and short breaks for both the carer and the person
with MS
- provision of appropriate long-term facilities
- access to information about services and community care resources
- expertise in caring for persons with MS with a severe disability
- co-ordination of all services
- adequate and appropriate community care services, including home adaptations, mobility
equipment and aids, health services
- appropriate palliative care
The optimal answer to the needs of persons with MS and their families will
only become possible by a collaborative effort among politicians, persons with
MS and their supporting organisations, service providers and researchers to
establish adequate services.
Rehabilitation in MS
15
16 Rehabilitation in MS
MS has physical and psychosocial consequences, which may have an enormous
long-term impact on almost every aspect of the everyday lives of persons with
MS and their families. Rehabilitation should therefore improve the ability to
undertake basic daily functional activities, mobility, occupation, communication
and social integration. Rehabilitation is commonly thought of in terms of
restoration of the physical ability. The disease, however, can also affect
cognition, memory and emotions in that vast part of the brain accounting for
human higher functioning. Rehabilitation should therefore also improve the
health-related quality of life and emotional well-being. The different aspects
of the disease require an interdisciplinary team: the global management of the
frequently changing needs of individual persons with MS and their families
requires co-ordination among professionals, hospitals and the community.
Efficacy
Until a few years ago much literature was based on the description of the aims
and process of rehabilitation and depended on a subjective evaluation of the
outcomes. It was generally agreed that rehabilitation could potentially increase
the independence of persons with MS in their everyday activities.
This improvement, however, could have been established by the changes in the
environment and the attention received by the treatment group. It therefore
later became clear that building an evidence base for MS management required
a control group. A control group admitted to a rehabilitation-style setting
seemed impractical, especially because both persons with MS and professionals
were to be kept unaware that this was a sham intervention. On the contrary
some studies were performed using persons with MS on a waiting list for
rehabilitation as a control group in combination with a blind examining
physician. These controlled, randomised trials have shown that a rigorous
methodology is possible and it has provided evidence to the widely held belief
that specialised neurological physiotherapy helps to improve the mobility of
persons with MS.
Studies of efficacy
The first studies of efficacy evaluated the functional status at admission and
upon discharge:
- Feigenson et al., (1981) showed a significant improvement in this way in
balance, self-care activities, bladder incontinence, transfers and mobility in 20
persons with MS after 9 weeks of a multidisciplinary, inpatient rehabilitation.
- Jnsson et al., (1996) also measured the quality of life and registered an
improvement concerning physical endurance, work and mood after 5-8
weeks of inpatient rehabilitation.
In the later controlled, randomised trials the following studies were innovative:
- Freeman et al., (1997) showed a significant benefit in disability measured
with the Functional Independence Measure (p< 0.001) and handicap measured
with the London Handicap Scale (p<0.01) after a period of inpatient
rehabilitation during an average of 25 days in 66 persons with MS.
- Solari et al., (1999) found a significantly improved disability assessed by
mobility, self-care and locomotion and overall health-related quality of life in
27 persons with MS after three weeks of inpatient rehabilitation.
Definition
Rehabilitation at different stages
As mentioned above, rehabilitation is a lengthy and ever-changing process.
The majority of persons with MS have an initial relapse/remitting course in
which remission after attacks varies in quality. After a variable period of time,
this may be followed by a progressive disability.
However, you should keep in mind that about 20% of persons with MS do not
note any progression in their disability.
The diagnostic phase
Everybody experiences the diagnostic phase. During the past 20 years
diagnosing MS has become clearer using MRI, spinal fluid examinations and
neurophysiological evaluations by evoked potentials, which have enabled us
almost to exclude mimicking diseases. When receiving the diagnosis, persons
usually go through a crisis with feelings of panic, shock and depression and there
is often a limited capacity of the individual to absorb information.
It is often required for the patient to have further appointments with the
neurologist and the specialist MS nurse should have a liaising role.
Many persons with MS also need psychological support. The way persons with
MS are treated at this stage can affect the way they cope with their disease in the
future. This has been expressed as follows by a man with a long term progressive
MS: Professional teams have the capacity to support the patient emotionally
and to find out the way he can cope with the physical limitations. This profound
support during early MS is crucial. It determines the persons quality of life during
the later years with the disease. Thus in early MS there is an intense need for
information and knowledgeable advice, which can empower persons with MS
to take control. In addition, medical counselling must take place to establish
immuno-modulatory treatment involving self-injection when indicated.
Early stage
In the early stages of the disease, persons with MS suffer occasional relapses
but usually recover well. Often persons with MS experience low energy levels.
Managing this fatigue can be part of the content in an MS school, an
educational and counselling programme for persons with recently diagnosed
MS. Other themes are symptomatic treatment, adaptation training to find their
own resources, motor rehabilitation, aids and home adaptation, social and
professional consequences etc.
These socio-economic implications must especially be addressed since the
majority of persons with MS are young adults supporting young families.
- Wiles et al., (2001) evaluated three weeks of physiotherapy and found
significantly improved mobility, gait and balance in 40 persons with MS.
- OHara et al., (2002) tested a self-care based intervention programme in 73
persons with MS and found significantly better SF-36 health scores and level
of independence after 6 months.
In several other studies it has been shown that spasticity can be reduced,
voiding bladder disturbances diminished, ataxia lessened, pain relieved.
These reports resulted in a headline in Lancet:
Rehabilitation still the only way to improve function in MS (G.H.Kraft 1999).
Assessment and goals
Multiple sclerosis poses a wide variety of problems beginning from the exact
diagnosis, to medical management of the disease and rehabilitation. The effect
of rehabilitation in MS in spite of its progressive nature has been proven by
rehabilitation research studies quoted in the previous chapter.
Those studies highlight that inpatient rehabilitation should not be seen in
isolation and must be a part of a continuum of care involving inpatient,
outpatient and community services. In order to achieve efficacy, a highly
trained, informed and experienced interdisciplinary team is needed at different
levels of care.Efficient rehabilitation is cost-effective and it is the rehabilitation
team that can provide co-ordinated services for the disabled person and family.
This should lead to better use of limited resources and prevent duplication of
assessment and treatment. Rehabilitation is a process, a continuum as described
above. The quality or appropriateness of rehabilitation can only be as good as
the assessment on which it is based.
The initial and thorough assessment will identify areas in which the potential for
change will benefit the person with MS. The assessment can be either home or
centre based but it is vital that it is as comprehensive as possible.
The long-term and short-term goal setting is crucial to define the extent of the
improvement possible and the time required to achieve it. It is then possible
Later stage
In later stage of the disease, impairment results in both disability and handicap
and this can lead to a loss of self-sufficiency, especially in the occupational and
social field. The lack of adequate means of transport and accessible workplaces
increases the unemployment rate among persons with MS compared to the
average. Long-term care programmes for these problems may be necessary,
including treatment of spasticity, bladder dysfunction, gait disturbances, ataxia,
reduced vision, sexual and emotional disturbances and cognitive impairment.
In these cases neurorehabilitation units provide a bridge between the acute
hospital and community care. Inpatient rehabilitation allowing integrated, goal-
oriented rehabilitation programmes should be undertaken.
The alternative, which has been successful in many countries, is the
establishment of outpatient day units having close links with the community
along with professional interventions delivered at home when needed.
Advanced stage
In advanced stage of the disease persons with MS can become dependent in
both mobility and activities of daily living. The aim at this stage is to maintain
as long as possible an independent life despite MS in their own environment.
Rehabilitation at this stage also concentrates on installing equipment in the
house to allow the person more independence and/or lessen the burden on the
carers. In this situation there is an important role in teaching the carers how
best to cope with their physical tasks and handle any cognitive or behavioural
problems, which may be present. Appropriate professional support at home can
help to maintain a quality of life; long-term care facilities can be needed and
respite care should in some cases be provided.
Effective support, also at this stage, is known to reduce the number of hospital
admissions, improve the general health state and quality of life.
Finally, the needs of the carers should also be recognised and highlighted.
The interdisciplinary approach
Different types of teamwork can be applied in MS. The most commonly
applied approaches are either multidisciplinary or interdisciplinary models.
Multidisciplinary teamwork applies to models where all work efforts of different
team members are parallel and discipline oriented.
The result will be the sum of the efforts of all team members. However, in MS,
an interdisciplinary approach is much more effective and is applied in the
best European centres. The idea of the interdisciplinary approach is working
together for the same goal. Team members are required to have the skills of
their discipline as well as the ability to contribute to a group effort on behalf
of the patient. The treatment programme is synergistic, producing more than
each discipline could achieve individually. This synergistic approach is obtained
formally by a team conference. Communication and participation are the key
words in the team-work The team members working with a progressive, life-
long disease have to share common values and objectives that remain relatively
unchanged throughout time. The team members have to be qualified in
communication and in life-long learning.
On the other hand the communication among team members should be open,
accept different views, medical and non-medical, and ready to negotiate and
to share values with all team members. The team must be ready to form and
develop new values, attitudes and perceptions, tolerate constant review and
challenge of ideas, and ultimately, accept a team philosophy of care.
Also, treatment techniques change in response to new research findings and
therefore creativity and problem solving capacity are very important to the
effective functioning of the rehabilitation team.
The teams that provide specialist care and deal on a daily basis with the person
with MS with different problems, are a concentration of the best expertise in
the world. Therefore, a good proportion of relevant medical and non-medical
research should come from these specialised teams. This notion is especially
important in setting priorities for funding research in rehabilitation. MS is a
relatively rare disease and therefore a qualified team is always the resource
centre for all different medical and non-medical specialists dealing with MS.
to point out small measurable steps towards the established goals that are
important for the person with MS, not just for the professionals. In addition,
evaluation of the results of rehabilitation - if the goals were reached - is
essential for a high quality rehabilitation team.
Rehabilitation team
Good rehabilitation is tailor-made, flexible, and dynamic and depends on the
needs of the person with MS. Hence the rehabilitation team usually includes the
whole range of specialists. The leader of the team changes over time according
to the changing needs of the person with MS. All team members can be the
team leaders, the person with MS himself/herself, co-ordinators who may be
non-medical lay persons (i.e. the assistant manager of the person with MS, all
other members of the team). There is a core group of specialists involved in
the team including the neurologist and /or rehabilitation physician, assistant
manager of the person, psychologist and/or neuropsychologist, physiotherapist,
occupational therapist, speech therapist, rehabilitation nurse and/or nurse
Service delivery
The health needs of persons with MS, which are comparable across national
boundaries, can be addressed in the different nations by health systems which
vary in their organisation, funding and population distribution.
Fundamental principles
There are certain important qualities which should underpin any model of MS
service delivery:
- The service must guarantee internal integration among professionals and
must be also integrated with all other existing health services relevant for MS
(hospital departments, outpatient clinics, community services), so that gaps in
service delivery and communication are avoided.
- Because MS is unpredictable, particularly with regard to relapse occurrence
and speed of disability progression, the service must be able to respond in a
timely manner without excessive delay and bureaucracy.
- There is a variety of symptoms, disabilities and disease subtypes: services must
be flexible and able to adapt to the needs of the patient.
- Services should be patient centred and not designed to suit the institution or
funders, which may often mean they will be as local as scarce expertise and
resources allow.
- Finally, MS services must be evidence-based. This encompasses practising
evidence based care but also drawing from relevant research in non-MS areas,
and collaborating to build the evidence base through research and audit.
Functions and Components of MS Services
According to the stage of progression of the disease, the MS service delivery
will concentrate on the provision of sure diagnoses; relapse management,
management of symptoms, treatment of the disease (modifying drug initiation
and monitoring), disability review, counselling, vocational rehabilitation, health
promotion, maintenance therapy, treatment of intercurrent illnesses, respite
continence advisor and the social worker. The most important member of the
team is no doubt the person with MS. The role of this person is critical. MS is
so different and so are the persons with this diagnosis. The best practice means
not only evidence-based methods but also a client-oriented approach, taking
into consideration the clients autonomy and his/her goals in life. In practice, in
order to achieve the best results, the person with MS has to be well-informed,
knowledgeable in MS and accept updated efficient management methods. It
is also paramount that the person with MS follows the agreed plan once the
goals are established. A wider range of specialists can also be involved the
psychosexual therapist, urologist, gynaecologist, ophthalmologist, mobility aid
specialist, orthopaedic surgeon, family physician etc.
Often the team first meets when the person has only recently learned about
the diagnosis and is physically more or less healthy. Unfortunately, MS is often
progressive. This poses new and permanent challenges to the whole team to
manage different changes that are physical, emotional and cognitive and that
the person with MS and the team have to go through during life. It is important
that the professionals are conscious of these incipient changes to be able to
adapt, avoid burnout and be prepared to work together with their client.
care and palliative care. There is no single model which can be imposed on all
health systems. The roles and the range of inpatient, outpatient and community
services will vary according to local requirements, and costs will clearly depend
on national systems. However there are general considerations regarding
resource and capacity:
- Adherence to the fundamental principles means that funding must be
available for good integration of services, as a person with MS may access
inpatient, outpatient and community services to different degrees, at different
stages of the illness.
- In order to be patient centred and have timely services, there must be some
uncommitted capacity to treating urgent, unforeseen needs like relapses or an
atypically fast disease course.
- A good MS service will not allocate all the clinical resources to planned patients
as it recognises the need to be flexible. In order to improve current and future
care, all services need time and support to contribute to research and audit.
Key words for teamwork and service delivery in MS
- Rehabilitation is a process, continuum, provided by the highly trained and informed team
- Teamwork is dynamic and flexible, tailored according to the needs of the person with MS
- On the basis of thorough assessment, the team has to set achievable goals that can be measured
- Team work with the person with MS should be interdisciplinary, needs to share common stable
values but retain openness to change
- The person with MS and his/her caregiver are the key members of the team
- Team has core members whose input is necessary more frequently during the course of MS
- Delivered services should be of high quality but as accessible as possible (home-based if feasible)
- Delivery of services should be continuously adapted to the needs of the person with MS
and should be flexible, timely, evidence and experience based.
- Delivery of services for the person with MS and their carers should be accessible and regionally
equal (home-based if the quality is sustained).
Rehabilitation interventions
23
24 Rehabilitation interventions
Type and frequency of mobility deficits
The majority of persons with MS suffer from a combination of different
sensory-motor symptoms. Spasticity (50 90 %), muscle weakness
(60 80 %) and ataxia (30 70 %) will often lead to reduced mobility as
well as fatigue can make more difficult any activity of 80% of people.
Consequences of mobility deficits
With the progression of MS, mobility will decrease over time.
Untreated mobility deficits will lead the person with MS to a loss of
functional independence (walking, moving about, writing) with major
implications on the family, professional and social life.
Assessment
Physiotherapists will be concerned primarily with sensory-motor dysfunction;
the wider context within which disability is expressed and experienced
must also be taken into account. The assessment will focus on performing
functional activities, posture and movement carefully considering the
performance limited by fatigue, pain and others. Analysing these results
together with the proper opinion and interest of the person with MS will
enable the physiotherapist to set up an individually tailored physiotherapy
programme
Treatment
Set up of an individually tailored physiotherapy programme
As physiotherapy provide a large number of techniques and approaches
aimed to optimise physical fitness and facilitate functional independence, the
programme of interventions resulting from a comprehensive assessment, will
be individually tailored.
Aerobic training in different forms at adapted levels, correct positioning
and postures, implementation and correct training of the use of assistive
technology, recommendations for sports activities are basic elements in a
physiotherapy programme.
This programme needs to be set up so that it is easy to be performed at
home, also providing education to self management approach.
Exercises to reduce spasticity, to improve balance and motor coordination are
important to minimise the impact of many symptoms on everyday activities.
At a later stage of the disease, physiotherapy interventions focusing on
regular stretching, respiratory training and informing the carers about
correct postures will prevent further complications.
Tentative evidence exists to support physiotherapy interventions in MS.
Publications such as from Wiles et al. (2001) provide evidence of the
effectiveness of physiotherapy in MS. Petajan et al. (1996) and recently
Mostert et al .(2002) gave us evidence of the effectiveness for aerobic
training in MS. The publications of Freeman et al.(1997) and Solari et
al.(1999) demonstrate the positive effects of a multidisciplinary rehabilitation
approach, in which physiotherapy has an important role.
Timing of intervention
In the early stages of the disease, it is important to explain which sensory-
motor problems can occur as well as their impact on functional activities.
Both oral and written information must be available for professionals and
non-professional caregivers. After a relapse, a specialised interdisciplinary
MS-centre seems to be the best place offering rehabilitation and
physiotherapy services to the person with MS. Even if no problem occurs, a
re-assessment every 6 months should be recommended.
Physiotherapy is commonly used in multiple sclerosis and is beneficial for
persons with multiple sclerosis. Physiotherapy interventions have the same
underlying aim to reduce disability and facilitate participation.
A close collaboration between professional community carers and
non professional caregivers at home is a key factor for the successful
management of MS rehabilitation.
This collaboration means offering information, education and support to all
those who are involved in the ongoing management of MS.
Physiotherapy
Type and frequency of mobility deficits
The majority of persons with MS suffer from a combination of different
sensory-motor symptoms. Spasticity (50 90 %), muscle weakness
(60 80 %) and ataxia (30 70 %) will often lead to reduced mobility as
well as fatigue can make more difficult any activity of 80% of people.
Consequences of mobility deficits
With the progression of MS, mobility will decrease over time.
Untreated mobility deficits will lead the person with MS to a loss of
functional independence (walking, moving about, writing) with major
implications on the family, professional and social life.
Assessment
Physiotherapists will be concerned primarily with sensory-motor dysfunction;
the wider context within which disability is expressed and experienced
must also be taken into account. The assessment will focus on performing
functional activities, posture and movement carefully considering the
performance limited by fatigue, pain and others. Analysing these results
together with the proper opinion and interest of the person with MS will
enable the physiotherapist to set up an individually tailored physiotherapy
programme
Treatment
Set up of an individually tailored physiotherapy programme
As physiotherapy provide a large number of techniques and approaches
aimed to optimise physical fitness and facilitate functional independence, the
programme of interventions resulting from a comprehensive assessment, will
be individually tailored.
Aerobic training in different forms at adapted levels, correct positioning
and postures, implementation and correct training of the use of assistive
technology, recommendations for sports activities are basic elements in a
physiotherapy programme.
This programme needs to be set up so that it is easy to be performed at
home, also providing education to self management approach.
Exercises to reduce spasticity, to improve balance and motor coordination are
important to minimise the impact of many symptoms on everyday activities.
At a later stage of the disease, physiotherapy interventions focusing on
regular stretching, respiratory training and informing the carers about
correct postures will prevent further complications.
Tentative evidence exists to support physiotherapy interventions in MS.
Publications such as from Wiles et al. (2001) provide evidence of the
effectiveness of physiotherapy in MS. Petajan et al. (1996) and recently
Mostert et al .(2002) gave us evidence of the effectiveness for aerobic
training in MS. The publications of Freeman et al.(1997) and Solari et
al.(1999) demonstrate the positive effects of a multidisciplinary rehabilitation
approach, in which physiotherapy has an important role.
Timing of intervention
In the early stages of the disease, it is important to explain which sensory-
motor problems can occur as well as their impact on functional activities.
Both oral and written information must be available for professionals and
non-professional caregivers. After a relapse, a specialised interdisciplinary
MS-centre seems to be the best place offering rehabilitation and
physiotherapy services to the person with MS. Even if no problem occurs, a
re-assessment every 6 months should be recommended.
Physiotherapy is commonly used in multiple sclerosis and is beneficial for
persons with multiple sclerosis. Physiotherapy interventions have the same
underlying aim to reduce disability and facilitate participation.
A close collaboration between professional community carers and
non professional caregivers at home is a key factor for the successful
management of MS rehabilitation.
This collaboration means offering information, education and support to all
those who are involved in the ongoing management of MS.
Type and frequency of psychological reactions
The diagnosis of multiple sclerosis results in an on-going adjustment process.
The person with MS has to live with the unpredictability and uncertainty of
future disease progression and thereby advanced disability - and so do the
close relatives. A psychological crisis may occur and is characterised by:
a) overwhelming strong feelings such as despair, sorrow, anger, anxiety;
b) confusion and difficulties in making judgements, keeping control and
solving everyday problems and;
c) a changed picture of oneself (the identity) and of ones world (the
future). Persons with MS may also experience temporary cognitive problems
when in crisis. The frequency of psychological problems in MS is not well
documented. However, from research on depression and on psychological
reactions in recently diagnosed MS, it can be estimated that at least 50 % of
persons with MS have a need for psychological intervention.
Consequences of psychological reactions
A crisis has a major impact on daily life. It prevents the person from
sustaining the routines in relation to both family, social activities and work.
Thus, related psychological problems deriving from an untreated disease may
result not only in a decreased quality of life for the person with MS, but
also have marked psycho-social consequences (sick leave, loss of job, broken
partnerships etc.).
Psychological assessment and goal setting
Careful assessment should be offered when a person experiences
psychological problems. The aim of the assessment is to offer qualified
treatment. The causes of the psychological reactions that have been
presented have to be sorted out in order to make sure that the symptoms do
not have a severity or a cause that demands referral to other professionals.
This could be the case in depression, symptomatic treatment of other
symptoms etc. It is also important to judge whether a person can profit from
the treatment offered.
The person may have severe cognitive impairments, behavioural changes, or
profound psychological defence mechanisms (denial) that would hinder a
successful, psychological intervention.
Based on the assessment, the goals and framework of the treatment are
planned together with the person with MS. The goals may be set in steps and
revised during treatment. Clarified frameworks are always an advantage for
the outcome of the treatment.
Psychological treatment and support
Rehabilitation starts when the diagnosis is given, and it is recommended
that the person with MS and the close relative are introduced to all members
of the MS team, which includes the clinical psychologist and/or the
neuropsychologist.
Some people need little or no help, while others need more help.
Psychology
The following offers should be available:
- The waiting-time for referral to psychological intervention should be short
- The number of psychological sessions should be individually planned, and
not necessarily limited to one session. Feelings, which may be difficult and
uneasy to talk about are brought out into the open, and there should be
time for closing down again
- Individual sessions or sessions together with the close relative
(partner, parent)
- Meetings in homogeneous groups, for example newly diagnosed persons
- Groups for relatives without participation of the persons with MS. Relatives
also have a great need for sharing their feelings, anxieties and experiences
with others
- Written information about normal psychological reactions
- Different courses, for example about how to live with MS or more specific
topics such as sexuality or cognitive problems and their management
Regarding the fact that MS is a chronic, progressive disease, and strikes at
early ages (20-40 years), it is obvious that different kinds of psychological
intervention should be offered at different stages of the disease. Offering
early intervention will no doubt result in increased quality of life for the
person with MS and the family and decrease the need for later intervention
and other social services.
All members of the MS-team should be able to offer some kind of
counselling, but psychological therapy should be carried out by specialists
(clinical psychologist, neuropsychologist, psychiatrist), who have the
sufficient professional background, a profound knowledge about human
interactions and defence mechanisms, about MS-related cognitive deficits
and behavioural changes due to brain lesions.
Type and frequency of cognitive deficits
45-65% of persons with MS have cognitive deficits with varying degrees
of severity. MS-related cognitive deficits are highly individual and may be
progressive, as the disease itself. As MS lesions have a tendency to affect
the efficient functioning of certain neural networks, the most vulnerable
cognitive domains are: attention, learning and memory, planning, problem
solving, flexibility, mental speed and word finding.
Cognitive deficits do not have a clear relationship with disease duration,
disease course or physical disability.
Thus, cognitive deficits may occur early as well as late in the disease course,
in patients with only mild as well as more severe physical disabilities.
Cognitive deficits are more often associated with the secondary progressive
disease course and with a large cerebral lesion load.
Consequences of cognitive deficits
Cognitive deficits have a major psychosocial impact (education, work,
driving, leisure activities, family and social life) and personal impact
(personal competence, self-esteem, quality of life). Rehabilitation outcome
is negatively influenced by cognitive deficits. All persons with MS as well as
their caregivers (professionals and non-professionals) should be informed
about MS-related cognitive problems including cognitive fatigue.
Both oral and written information should be available.
Neuropsychological assessment/evaluation and feedback
Persons with MS experiencing cognitive problems or those who are supposed
to have them should undergo neuropsychological assessment which can help
to evaluate the causes of cognitive problems (psycho reactive or organic) as
well as find appropriate ways to reduce the effect of impairment.
Cognitive deficits should be diagnosed as early as possible in order to help
patients and their caregivers to cope with the new situation.
Thorough feedback about the results should be given, pointing out cognitive
strengths and weaknesses.
Treatment of cognitive deficits
Neurocognitive rehabilitation should be offered whenever cognitive deficits
are present and whatever the severity. Compensation is needed when there is
a gap between the expected level of functioning and the actual level.
The evaluating methods should be selected individually.
Compensation consists of 4 elements:
1) Remediation: direct training of a reduced function.
2) Substitution: using other methods to achieve the same result
3) Adaptation: to adjust ones own goals and expectations to the actual level
of functioning (coping)
4) Assimilation: to adjust other peoples expectations to the actual level of
functioning (inform significant others, caregivers, society etc).
Taking into consideration the high frequency of cognitive deficits in MS and
Rehabilitation in cognitive impairment
their serious consequences, the information about MS-related cognitive
problems and neuropsychological assessment and feedback, neurocognitive
rehabilitation should be essential parts of any rehabilitation. Rehabilitation
starts once the diagnosis is given. Accordingly, the neuropsychologist
should be part of any MS-team in order to offer competent assessment and
treatment to the person with MS.
Type and frequency of deficits
More than 80% of persons with MS have bladder disorders such as urgency,
frequency, nocturia, incontinence, hesitancy or retention. Frequently, these
symptoms are associated. About 60% of persons with MS have bowel
disorders that include constipation, faecal incontinence, faecal urgency or
difficulty and pain. The prevalence of sexual disorders in persons with MS is
about 80% for men and 55% for women. The most common symptoms in
men are erectile dysfunction, loss of libido, altered sensitivity, and ejaculatory
failure and in women, a loss of libido, vaginal dryness, altered sensitivity,
difficulty in attaining orgasm. Neurological damage is the primary cause of
sexual dysfunction but even psychological or psychiatric disorders such as
depression or interference with some medications can cause these problems.
Sexual behaviour can also be affected by other kinds of impairment such as
pain, spasticity or bladder dysfunction.
Consequences of deficits
Untreated bladder disorders may lead to infections, kidney damage,
emotional distress, social isolation and sleep disturbances.
They may also increase spasticity and fatigue, increasing the risk of pressure
ulcers and thus cause a general loss in the quality of life. Bowel problems
produce social embarrassment, risk of pressure ulcers, increase of spastic
disorders and a risk of infections. Sexual dysfunction may have severe
consequences on the relationship with the partner and have a negative
psychological impact on the person with MS.
Information about bladder, bowel and sexual disorders
These disorders are underestimated and frequently persons with MS dont
talk about them with professionals out of embarrassment or because they do
not think of the close connection with MS. Persons with MS, their families
and caregivers (professionals and non-professionals) should be informed
about these deficits.
Assessment and goal setting for bladder disorders
The primary setting is to prevent urinary complications, identify the type
of urinary dysfunction, the physio-pathological mechanisms involved, and
exclude other pathologies of the urinary tract. The assessment process
should start with an interview to collect the clinical history, with a clinical
examination (neurological and pelvic floor examination), a micturition
diary and a post-voiding residual measured by ultrasonography (post-
voiding residual increases the risk of complications on the urinary tract, like
infections or kidney damage). In order to exclude anatomical abnormalities it
would be useful to perform an ultrasound on the kidneys.
A urological examination and a urodynamic evaluation should be done in
case of failure of the initial treatments, in the presence of other urological
pathologies or in the presence of high post-void residual.
The possible presence of a urinary tract infection should be assessed using an
appropriate dipstick for nitrites and leucocyte esterase. In the presence of a
urinary infection, a urine-culture is useful.
Treatment of bladder disorders
In presence of an infection, an appropriate antibiotic should be given. The
treatment of urinary infections should follow specific guidelines indicated
by competent scientific societies. The management of a urinary dysfunction
include pharmaceutical treatments, rehabilitation programmes and aids or
devices. Appropriate medical treatments with anticholinergic drugs, alpha
blockers, desmopressin, and muscle relaxants should be given.
Rehabilitation programmes such as behavioural modification, intermittent-
self catheterisation (taught by a suitably trained specialist), pelvic floor
training, biofeedback, electro-stimulation and neuromodulation should
be proposed. Aids for urinary dysfunction (pads, suprapubic catheters,
indwelling catheters, catheters for intermittent catheterisation, condom type
catheters) and toilet arrangements should be available.
Pharmaceutical treatments and catheterisation should be used in accordance
with the accepted guidelines.
Assessment and goal setting for bowel disorders
An evaluation of the possible anatomical abnormalities and an appropriate
assessment of the physio-pathological mechanisms should be done.
The evaluation should include clinical examination, dietician and fluid intake
habits, functional evaluation of the muscles involved, radiographic evaluation
of bowel contraction, instrumental exams (such as proctography, manometry
and electromyography of the anal sphincter).
Treatment of bowel disorders
The management of bowel problems should not be limited to drug intake,
local medication, appropriate fluid intake or a well-balanced diet, but should
also include a rehabilitation programme and bowel aids.
The rehabilitation programmes include: behavioural modifications,
abdominal-diaphragmatic training, pelvic floor training, biofeedback,
electrical stimulation, abdominal massage.
Assessment and goal setting for sexual disorders
The aim of goal setting is to identify the type of sexual dysfunction,
the secondary causes of sexual problems such as bladder dysfunction,
spasticity, pain, depression etc, and the presence of accompanying
pathologies, the effects of these problems on patient relationships, the
family and the psychological impact on the person with MS. The assessment
should include a uro-andro-neurological examination, a psychological/
psychiatric evaluation, a physical examination (sensory and motor abilities),
neurophysiological tests to identify the pathways correlated to sexual
function mechanisms involved in the disorder, exams to assess erectile
function, as well as a hormonal and vascular evaluation.
Rehabilitation of bladder, bowel and sexual disorders
Type and frequency of deficits
More than 80% of persons with MS have bladder disorders such as urgency,
frequency, nocturia, incontinence, hesitancy or retention. Frequently, these
symptoms are associated. About 60% of persons with MS have bowel
disorders that include constipation, faecal incontinence, faecal urgency or
difficulty and pain. The prevalence of sexual disorders in persons with MS is
about 80% for men and 55% for women. The most common symptoms in
men are erectile dysfunction, loss of libido, altered sensitivity, and ejaculatory
failure and in women, a loss of libido, vaginal dryness, altered sensitivity,
difficulty in attaining orgasm. Neurological damage is the primary cause of
sexual dysfunction but even psychological or psychiatric disorders such as
depression or interference with some medications can cause these problems.
Sexual behaviour can also be affected by other kinds of impairment such as
pain, spasticity or bladder dysfunction.
Untreated bladder disorders may lead to infections, kidney damage,
emotional distress, social isolation and sleep disturbances.
They may also increase spasticity and fatigue, increasing the risk of pressure
ulcers and thus cause a general loss in the quality of life. Bowel problems
produce social embarrassment, risk of pressure ulcers, increase of spastic
disorders and a risk of infections. Sexual dysfunction may have severe
consequences on the relationship with the partner and have a negative
psychological impact on the person with MS.
Information about bladder, bowel and sexual disorders
These disorders are underestimated and frequently persons with MS dont
talk about them with professionals out of embarrassment or because they do
not think of the close connection with MS. Persons with MS, their families
and caregivers (professionals and non-professionals) should be informed
about these deficits.
Assessment and goal setting for bladder disorders
The primary setting is to prevent urinary complications, identify the type
of urinary dysfunction, the physio-pathological mechanisms involved, and
exclude other pathologies of the urinary tract. The assessment process
should start with an interview to collect the clinical history, with a clinical
examination (neurological and pelvic floor examination), a micturition
diary and a post-voiding residual measured by ultrasonography (post-
voiding residual increases the risk of complications on the urinary tract, like
infections or kidney damage). In order to exclude anatomical abnormalities it
would be useful to perform an ultrasound on the kidneys.
A urological examination and a urodynamic evaluation should be done in
case of failure of the initial treatments, in the presence of other urological
pathologies or in the presence of high post-void residual.
The possible presence of a urinary tract infection should be assessed using an
appropriate dipstick for nitrites and leucocyte esterase. In the presence of a
urinary infection, a urine-culture is useful.
Treatment of bladder disorders
In presence of an infection, an appropriate antibiotic should be given. The
treatment of urinary infections should follow specific guidelines indicated
by competent scientific societies. The management of a urinary dysfunction
include pharmaceutical treatments, rehabilitation programmes and aids or
devices. Appropriate medical treatments with anticholinergic drugs, alpha
blockers, desmopressin, and muscle relaxants should be given.
Rehabilitation programmes such as behavioural modification, intermittent-
self catheterisation (taught by a suitably trained specialist), pelvic floor
training, biofeedback, electro-stimulation and neuromodulation should
be proposed. Aids for urinary dysfunction (pads, suprapubic catheters,
indwelling catheters, catheters for intermittent catheterisation, condom type
catheters) and toilet arrangements should be available.
Pharmaceutical treatments and catheterisation should be used in accordance
with the accepted guidelines.
Assessment and goal setting for bowel disorders
An evaluation of the possible anatomical abnormalities and an appropriate
assessment of the physio-pathological mechanisms should be done.
The evaluation should include clinical examination, dietician and fluid intake
habits, functional evaluation of the muscles involved, radiographic evaluation
of bowel contraction, instrumental exams (such as proctography, manometry
and electromyography of the anal sphincter).
Treatment of bowel disorders
The management of bowel problems should not be limited to drug intake,
local medication, appropriate fluid intake or a well-balanced diet, but should
also include a rehabilitation programme and bowel aids.
The rehabilitation programmes include: behavioural modifications,
abdominal-diaphragmatic training, pelvic floor training, biofeedback,
electrical stimulation, abdominal massage.
Assessment and goal setting for sexual disorders
The aim of goal setting is to identify the type of sexual dysfunction,
the secondary causes of sexual problems such as bladder dysfunction,
spasticity, pain, depression etc, and the presence of accompanying
pathologies, the effects of these problems on patient relationships, the
family and the psychological impact on the person with MS. The assessment
should include a uro-andro-neurological examination, a psychological/
psychiatric evaluation, a physical examination (sensory and motor abilities),
neurophysiological tests to identify the pathways correlated to sexual
function mechanisms involved in the disorder, exams to assess erectile
function, as well as a hormonal and vascular evaluation.
Type and frequency of communication and swallowing deficits
30% of persons recently diagnosed with MS have respiratory dysfunction
(reduction of volumes, flows, pressure and maximal voluntary ventilation)
interfering with voice and speech production.
About 40-60% of persons with MS have speech problems, typically audible as
phonatory instability, imprecise articulation, and deficits of temporal aspects
of speech, intonation and prosody. The prevalence of high-level language
(HLL) deficits is probably as high as 40-65%, correlating with the prevalence
of cognitive problems.
Swallowing disorders affect more than 30% persons with MS in varying
degrees of severity and may lead to choking and aspiration of food.
Respiratory dysfunction, voice and speech deficits, HLL problems and
swallowing disorders do not have a clear correlation with the course of the
disease or duration and may occur very early or late with varying degrees of
severity. Communication and swallowing deficits have a major psychosocial
impact on work, education, social role, family role, parental role, conjugal role
and leisure. Problems with speech and swallowing reduce the individuals
quality of life and can lead to social isolation.
Rehabilitation can also be negatively influenced by communication disorders.
Swallowing deficits may lead to infections, malnutrition and death.
Communication and swallowing deficits are underestimated in MS.
All persons with MS, their families and caregivers (professionals and non-
professionals) should be informed about these deficits.
Assessment
The early basic assessment of communication and swallowing disorders
should include a functional evaluation of respiratory functions and a clinical
examination of the motor, sensory, and reflex aspects of the cranial nerves.
Phonatory dimensions, imprecise articulation and temporal aspects of speech
production should also be evaluated. A questionnaire for the partner and/or
the family should elicit information about intelligibility and the impact of
fatigue on communication. A sub-clinical objective assessment (acoustic
analysis) can be used to identify subtle signs of motor speech impairment
before they become clinically obvious. Specific and sensitive language tests
can reveal subtle HLL deficits influenced by cognitive problems.
The assessment of dysphagia should include motor and sensory aspects as
well as reflexes and should be complemented by a fluoroscopic examination
and a questionnaire for the family.
Treatment
The primary goal of treatment is to facilitate the active communication and
participation of the patient in his/her daily social and professional activities.
The goals will have to depend on communicative demands,
the support available, and cognitive-linguistic limitations experienced by the
Treatment of sexual disorders
The treatment should start with psycho-sexual counselling, that could
decrease the person with MS and his/her partner discomfort and increase
the understanding of the involved mechanisms. Pharmacological treatments
that could cause sexual dysfunctions should be considered. MS symptoms
such as fatigue, spasticity and urinary dysfunction should be treated with
appropriate rehabilitation programmes to decrease their impact on sexual
activity. Psychological support or treatment should also be available.
All treatments for erectile dysfunction should be available: oral drugs (such
as Sidenafil or Taladafil), intracavernosal injections with vasoactive drugs,
vacuum devices, penile prosthesis even for ejaculatory failure (electrical
stimulation, drugs). Women should have appropriate advice on lubricants, the
use of sexual aids and other advice to mitigate sexual dysfunction.
At present there is no efficient drug for sexual dysfunction in women.
The use of pelvic floor training should be considered.
Bladder, bowel and sexual dysfunctions are often underestimated. A regular
follow-up of these problems should be done. Appropriate assessment and
treatment involve different professionals. Persons with MS should have
access to specialised services, with expertise in these problems associated
with neurological diseases, which have an interdisciplinary approach.
Rehabilitation in speech, language and swallowing disorders
Type and frequency of communication and swallowing deficits
30% of persons recently diagnosed with MS have respiratory dysfunction
(reduction of volumes, flows, pressure and maximal voluntary ventilation)
interfering with voice and speech production.
About 40-60% of persons with MS have speech problems, typically audible as
phonatory instability, imprecise articulation, and deficits of temporal aspects
of speech, intonation and prosody. The prevalence of high-level language
(HLL) deficits is probably as high as 40-65%, correlating with the prevalence
of cognitive problems.
Swallowing disorders affect more than 30% persons with MS in varying
degrees of severity and may lead to choking and aspiration of food.
Respiratory dysfunction, voice and speech deficits, HLL problems and
swallowing disorders do not have a clear correlation with the course of the
disease or duration and may occur very early or late with varying degrees of
severity. Communication and swallowing deficits have a major psychosocial
impact on work, education, social role, family role, parental role, conjugal role
and leisure. Problems with speech and swallowing reduce the individuals
quality of life and can lead to social isolation.
Rehabilitation can also be negatively influenced by communication disorders.
Swallowing deficits may lead to infections, malnutrition and death.
Communication and swallowing deficits are underestimated in MS.
All persons with MS, their families and caregivers (professionals and non-
professionals) should be informed about these deficits.
Assessment
The early basic assessment of communication and swallowing disorders
should include a functional evaluation of respiratory functions and a clinical
examination of the motor, sensory, and reflex aspects of the cranial nerves.
Phonatory dimensions, imprecise articulation and temporal aspects of speech
production should also be evaluated. A questionnaire for the partner and/or
the family should elicit information about intelligibility and the impact of
fatigue on communication. A sub-clinical objective assessment (acoustic
analysis) can be used to identify subtle signs of motor speech impairment
before they become clinically obvious. Specific and sensitive language tests
can reveal subtle HLL deficits influenced by cognitive problems.
The assessment of dysphagia should include motor and sensory aspects as
well as reflexes and should be complemented by a fluoroscopic examination
and a questionnaire for the family.
Treatment
The primary goal of treatment is to facilitate the active communication and
participation of the patient in his/her daily social and professional activities.
The goals will have to depend on communicative demands,
the support available, and cognitive-linguistic limitations experienced by the
Treatment of sexual disorders
The treatment should start with psycho-sexual counselling, that could
decrease the person with MS and his/her partner discomfort and increase
the understanding of the involved mechanisms. Pharmacological treatments
that could cause sexual dysfunctions should be considered. MS symptoms
such as fatigue, spasticity and urinary dysfunction should be treated with
appropriate rehabilitation programmes to decrease their impact on sexual
activity. Psychological support or treatment should also be available.
All treatments for erectile dysfunction should be available: oral drugs (such
as Sidenafil or Taladafil), intracavernosal injections with vasoactive drugs,
vacuum devices, penile prosthesis even for ejaculatory failure (electrical
stimulation, drugs). Women should have appropriate advice on lubricants, the
use of sexual aids and other advice to mitigate sexual dysfunction.
At present there is no efficient drug for sexual dysfunction in women.
The use of pelvic floor training should be considered.
Bladder, bowel and sexual dysfunctions are often underestimated. A regular
follow-up of these problems should be done. Appropriate assessment and
treatment involve different professionals. Persons with MS should have
access to specialised services, with expertise in these problems associated
with neurological diseases, which have an interdisciplinary approach.
Presentation of the impairment
Persons with MS often undergo limitations in their daily occupations,
due to fatigue, pain, motor disorders or other symptoms. Occupational
therapists consider occupation to be everything that persons with MS do
to occupy themselves, including self-care, enjoying life and leisure, work
and productivity and social roles. Wherever multiple sclerosis disrupts the
ability to function, the individual will need to adapt to achieve maximum
independence and quality of life. Occupational therapy works to break down
the barriers which impede individuals in their everyday activities.
Assessment
The occupational therapist, together with the person with MS will focus on
individual and environmental abilities and problems related to activities in
the persons daily life such as activities of daily living (ADL), work, self-care,
and leisure. The results of the assessment are the basis of the plan which
includes short and long-term aims of treatment.
Intervention and goal setting
Within the interdisciplinary rehabilitation team, the occupational therapy
intervention for a person with MS is primarily concerned with addressing the
following issues:
- Maintaining and restoring physical, cognitive and social capacities
- Providing alternative methods and techniques to maintain independence
and compensate for limitations
- Providing advice regarding suitable adaptive equipment and modifications
to assist in independent living.
Depending on the situation, an occupational therapist may check and focus
on different issues:
- Physical abilities for ADL and mobility (hand functioning, transfers, fatigue)
in order to help overcome the disability
- Cognitive dysfunction (memory, organisation skills,)
- What are the assistive devices used? How can we adapt the material and
equipment for use in the personal occupation environment?
- The physical set up of the house, workplace or community, in order to
make recommendations for changes in the personal environment.
Occupational therapy interventions focus on maintaining abilities, teaching
new techniques and providing equipment which facilitate independence in
personal care, reducing environmental barriers and providing resources to
lessen disability.
person with MS. Treatment should be planned with a full understanding of
what is socially valid and meaningful both for the patient as well as the most
important person in his/her life.
Early respiratory training should include ventilation as well as active and
passive mobilisation exercises to maintain the vocal process. Component
process retraining should be used to target immediate goals with the aim
of improving specific cognitive-linguistic impairments that underpin the
functional communication disorder.
Compensatory strategy training aims to teach the individual methods
by which to overcome his/her deficits through the use of internal
compensation. Environmental modifications should facilitate communicative
success for the person with MS. The intervention should include advising a
potential communicative partner as to the best methods of interaction, or
altering the physical layout of a work site so that the person with MS should
be able to operate with limited distractions and extraneous noise.
Direct treatment of swallowing disorders should consist of assisting the
transition from tube feeding to oral feeding, for example, by stimulating
the chewing reflex and activating the swallow reflex. Appropriate therapy
should include also teaching compensatory techniques, as well as providing
information to patients, family, and caregivers.
Communication and swallowing functions should be specifically and
thoroughly investigated very early and regularly during the course of MS.
Treatment should be preventive in general and intensive during relapses.
It should be continuous with the goal of maintaining functioning during
remissions or throughout the disease course in the chronic evolution.
Occupational Therapy
Persons with MS often undergo limitations in their daily occupations,
due to fatigue, pain, motor disorders or other symptoms. Occupational
therapists consider occupation to be everything that persons with MS do
to occupy themselves, including self-care, enjoying life and leisure, work
and productivity and social roles. Wherever multiple sclerosis disrupts the
ability to function, the individual will need to adapt to achieve maximum
independence and quality of life. Occupational therapy works to break down
the barriers which impede individuals in their everyday activities.
Assessment
The occupational therapist, together with the person with MS will focus on
individual and environmental abilities and problems related to activities in
the persons daily life such as activities of daily living (ADL), work, self-care,
and leisure. The results of the assessment are the basis of the plan which
includes short and long-term aims of treatment.
Intervention and goal setting
Within the interdisciplinary rehabilitation team, the occupational therapy
intervention for a person with MS is primarily concerned with addressing the
following issues:
- Maintaining and restoring physical, cognitive and social capacities
- Providing alternative methods and techniques to maintain independence
and compensate for limitations
- Providing advice regarding suitable adaptive equipment and modifications
to assist in independent living.
Depending on the situation, an occupational therapist may check and focus
on different issues:
- Physical abilities for ADL and mobility (hand functioning, transfers, fatigue)
in order to help overcome the disability
- Cognitive dysfunction (memory, organisation skills,)
- What are the assistive devices used? How can we adapt the material and
equipment for use in the personal occupation environment?
- The physical set up of the house, workplace or community, in order to
make recommendations for changes in the personal environment.
Occupational therapy interventions focus on maintaining abilities, teaching
new techniques and providing equipment which facilitate independence in
personal care, reducing environmental barriers and providing resources to
lessen disability.
person with MS. Treatment should be planned with a full understanding of
what is socially valid and meaningful both for the patient as well as the most
important person in his/her life.
Early respiratory training should include ventilation as well as active and
passive mobilisation exercises to maintain the vocal process. Component
process retraining should be used to target immediate goals with the aim
of improving specific cognitive-linguistic impairments that underpin the
functional communication disorder.
Compensatory strategy training aims to teach the individual methods
by which to overcome his/her deficits through the use of internal
compensation. Environmental modifications should facilitate communicative
success for the person with MS. The intervention should include advising a
potential communicative partner as to the best methods of interaction, or
altering the physical layout of a work site so that the person with MS should
be able to operate with limited distractions and extraneous noise.
Direct treatment of swallowing disorders should consist of assisting the
transition from tube feeding to oral feeding, for example, by stimulating
the chewing reflex and activating the swallow reflex. Appropriate therapy
should include also teaching compensatory techniques, as well as providing
information to patients, family, and caregivers.
Communication and swallowing functions should be specifically and
thoroughly investigated very early and regularly during the course of MS.
Treatment should be preventive in general and intensive during relapses.
It should be continuous with the goal of maintaining functioning during
remissions or throughout the disease course in the chronic evolution.
Most persons with MS have specific education and work experience.
Many continue to work after their diagnosis and keep their jobs for a long
time. Some persons with MS however, have serious difficulties keeping their
jobs or are advised that quitting work would be the best choice.
In fact, within 10-15 years after diagnosis, only 25% of persons with MS still
work. (G. Sumner and N. Law Work and Productivity).
This is disturbing because many persons with MS do not experience chronic
debilitating symptoms, so that many who leave work regret doing so.
Having MS and maintaining work can be a challenge for the obstacles
in the workplace, such as inaccessible offices, lack of social support, or
discrimination by employers or co-workers are most frustrating.
Assessment
Vocational therapy begins with a comprehensive vocational evaluation
to determine a persons basic skills, including his/her dexterity and other
physical capabilities, such as fatigue, as well as his/her cognitive capabilities.
The evaluation process also includes a component that determines changes
in physical and cognitive capabilities and interests over time.
In addition, an evaluation of the workplace can help to organize the work
environment, maintain energy and become more efficient.
Interventions
Once the evaluation is complete, the occupational or vocational rehabilitation
specialist will accompany the person in this process.
- To what extent do symptoms interfere with the job duties? Find out how to
manage the symptoms in the light of the work demand
- Try to organise the workload, set priorities and pace yourself, especially if
fatigue is a problem.
- Arrange the work environment, so that energy can be conserved and the
physical demands are minimised.
- Communicate needs and concerns to the employer
- Use support systems. Let co-workers or supervisors know when help is
needed.
- Request accommodation if there are difficulties
Indeed, the vocational rehabilitation aim to identify and implement
the necessary assistive equipment, environmental modifications, task
restructuring, task modification, use of co-workers, or other members of the
productive group as personal assistants.
It is important to overcome the job barriers with creativity to identify the
options and face the barriers by open communication with the employer.
MS may challenge the ability of persons to adjust, step by step, to their
disabilities: changes in emotion and cognitive skills, fatigue or pain may
require different patterns of personal adjustment to everyday activities.
Nursing intervention for persons with MS is aimed at promoting their
personal independence, helping them to manage symptoms and to improve
adjustments to the progression of the disease.
As a part of the interdisciplinary team, the nurse provides the best
management of care designed by other specialists, supplementing and
integrating every intervention in an individualised model of assistance.
All the symptoms managed by the rehabilitation nurse can be evaluated
many times during the course of the disease.
Information
All persons with MS as well as their caregivers (professionals and non-
professionals) should be informed about all the nursing problems that can
occur during the course of the disease and about the competencies of the
rehabilitation nurse. Both oral and written information should be available.

Nursing intervention
Comprehensive rehabilitation nursing should be designed within the
framework of a problem-solving process, in which the degree of disability is
the variable key for finding the best personal solutions.
Nursing intervention may drive the person with MS to achieve the best
behavioural changes that are necessary for the adjustment to the disease,
especially by teaching approaches and techniques for the management of
symptoms.
The rehabilitation nursing assistance includes:
. Teaching the person with MS and her/his caregivers the use of self-care
behaviours in managing:
- drug;
- bowel and bladder problems using specific techniques and diet;
- personal sanitary measures;
- skin problems.
. Researching with other specialists and teaching the person with MS and
her/his caregivers the approaches fitted to the individual needs in:
- the management of fatigue, pain and other symptoms disturbing the
activities of daily living;
- measures of stress reduction;
- environmental measures to improve individual adjustment;
- measures to prevent immobility complications.
Rehabilitation nursing must be organised within the rehabilitation team, in
order to be able to offer competent assessment and assistance to the person
with MS and his/her relatives and to improve the adherence of persons with
MS to the treatment.
Vocational rehabilitation
Most persons with MS have specific education and work experience.
Many continue to work after their diagnosis and keep their jobs for a long
time. Some persons with MS however, have serious difficulties keeping their
jobs or are advised that quitting work would be the best choice.
In fact, within 10-15 years after diagnosis, only 25% of persons with MS still
work. (G. Sumner and N. Law Work and Productivity).
This is disturbing because many persons with MS do not experience chronic
debilitating symptoms, so that many who leave work regret doing so.
Having MS and maintaining work can be a challenge for the obstacles
in the workplace, such as inaccessible offices, lack of social support, or
discrimination by employers or co-workers are most frustrating.
Assessment
Vocational therapy begins with a comprehensive vocational evaluation
to determine a persons basic skills, including his/her dexterity and other
physical capabilities, such as fatigue, as well as his/her cognitive capabilities.
The evaluation process also includes a component that determines changes
in physical and cognitive capabilities and interests over time.
In addition, an evaluation of the workplace can help to organize the work
environment, maintain energy and become more efficient.
Interventions
Once the evaluation is complete, the occupational or vocational rehabilitation
specialist will accompany the person in this process.
- To what extent do symptoms interfere with the job duties? Find out how to
manage the symptoms in the light of the work demand
- Try to organise the workload, set priorities and pace yourself, especially if
fatigue is a problem.
- Arrange the work environment, so that energy can be conserved and the
physical demands are minimised.
- Communicate needs and concerns to the employer
- Use support systems. Let co-workers or supervisors know when help is
needed.
- Request accommodation if there are difficulties
Indeed, the vocational rehabilitation aim to identify and implement
the necessary assistive equipment, environmental modifications, task
restructuring, task modification, use of co-workers, or other members of the
productive group as personal assistants.
It is important to overcome the job barriers with creativity to identify the
options and face the barriers by open communication with the employer.
MS may challenge the ability of persons to adjust, step by step, to their
disabilities: changes in emotion and cognitive skills, fatigue or pain may
require different patterns of personal adjustment to everyday activities.
Nursing intervention for persons with MS is aimed at promoting their
personal independence, helping them to manage symptoms and to improve
adjustments to the progression of the disease.
As a part of the interdisciplinary team, the nurse provides the best
management of care designed by other specialists, supplementing and
integrating every intervention in an individualised model of assistance.
All the symptoms managed by the rehabilitation nurse can be evaluated
many times during the course of the disease.
Information
All persons with MS as well as their caregivers (professionals and non-
professionals) should be informed about all the nursing problems that can
occur during the course of the disease and about the competencies of the
rehabilitation nurse. Both oral and written information should be available.

Nursing intervention
Comprehensive rehabilitation nursing should be designed within the
framework of a problem-solving process, in which the degree of disability is
the variable key for finding the best personal solutions.
Nursing intervention may drive the person with MS to achieve the best
behavioural changes that are necessary for the adjustment to the disease,
especially by teaching approaches and techniques for the management of
symptoms.
The rehabilitation nursing assistance includes:
. Teaching the person with MS and her/his caregivers the use of self-care
behaviours in managing:
- drug;
- bowel and bladder problems using specific techniques and diet;
- personal sanitary measures;
- skin problems.
. Researching with other specialists and teaching the person with MS and
her/his caregivers the approaches fitted to the individual needs in:
- the management of fatigue, pain and other symptoms disturbing the
activities of daily living;
- measures of stress reduction;
- environmental measures to improve individual adjustment;
- measures to prevent immobility complications.
Rehabilitation nursing must be organised within the rehabilitation team, in
order to be able to offer competent assessment and assistance to the person
with MS and his/her relatives and to improve the adherence of persons with
MS to the treatment.
Rehabilitation nursing
Social counselling
Optimal social (re)integration is the main goal of every interdisciplinary
rehabilitation effort. Since MS affects the person and his/her entire social
system, all actors have to be involved in the management of care.
Persons with MS, their partners and families have a strong need for
information and support, in order to tap all sources that could be useful to
overcome the social consequences of their illness and to improve or at least
maintain their role and place in society.
Social worker in a interdisciplinary MS rehabilitation team should therefore
focus on the person with MS and family needs in a wide range of domains:
family situation and relationships, work and occupation, finances and
social security systems, housing, professional and non-professional home
care (with special attention for the burdens and needs of non-professional
caregivers), transportation problems, professional healthcare including
outpatient rehabilitation programmes. A continuity of care, exchange
of information and communication with home care professionals are
cornerstones in the long-term management of MS, obviously in consultation
with the person with MS and his/her family.
Problem analysis and description
A standardised social file is used to screen the situation in a uniform way.
Not only the patients view is taken into account, but special attention is
given to the needs of the non-professional caregiver and, if indicated, to
problems of/with professional home caregivers and healthcare professionals.
At this moment, the Environmental Status Scale is still used as the
screening instrument, but it is not very satisfying. Experiments to develop a
more appropriate evaluating instrument are going on.
Information, counselling, support and guidance: meeting
social problems
The person with MS and his/her family always meet a social worker on
admission at the hospital for an inpatient rehabilitation treatment or at the
start of their outpatient rehabilitation. Often, patients are already acquainted
with the social worker, because of an earlier hospitalisation, or a meeting
after a medical consultation, and this may reduce tension and anxiety of the
person with MS as well as for his/her family: they get the opportunity to ask
questions, to express their feelings towards the admission or towards the
medical and/or social problems that caused the need for hospitalisation.
- Relationships and family problems: as well as the information and needs
of the person with MS, ongoing attention for the burden of the caregiver
is needed. Particularly during hospitalisation, the social worker of the
rehabilitation team has to take initiatives to involve the partner or other non-
professional caregivers in fixing targets of rehabilitation, both in the short
term as well as long term. Patients may need referral to, or assistance in
consulting external judicial services.
- Work: Persons with MS may need guidance to make decisions about
outing their diagnosis towards their employer, they may need information
about governmental programmes and about their legal rights or they may
ask to contact their employer. Giving up a job has a lot of financial and
social consequences, which need to be discussed extensively before a well-
grounded decision can be made.
- Homecare: the social worker has to evaluate the needs of persons with MS
and caregivers, which are not necessarily compatible. Negotiation is often
required, with persons with MS as well as with their families, as with home
care services and healthcare professionals in the community. In order to
avoid long-term problems, a good job description and correct agreements
between all those involved are needed, concerning the timing as well as the
content of the job. The mediation of the social worker may be requested
when (re)discussing these topics.
- Finances and social security interventions:
social policy is not always very transparent and often, persons with MS do
not automatically obtain the social benefits they are eligible for. Information
is the first step, but is not always sufficient. Persons with MS and their
families very often appeal to the social worker of the rehabilitation team to
give support and practical help with applications for different social benefits
to different departments, resulting from various and different legal measures.
Multidisciplinary reports and extensive motivation reports are often needed
to support these applications. When needed, the social worker will negotiate
the attribution of the social benefit with the department handling the
application
- Technical aids and home adaptation:
in co-operation with the occupational therapist, the social worker of the
team gives information and advice concerning the best choice, taking into
account the financial implications and legal interventions, the expectations
and aversions of persons with MS and their families, the degree of
acceptance and long-term management of MS. If indicated, home care
professionals are also involved in decision-making.
Informal and formal discussions, round tables and home visits
Interdisciplinary team meetings are an indispensable tool to get informed
about all relevant aspects of the condition of a person with MS and to
inform other rehabilitation professionals about relevant social and family
related topics. In order to realise his objectives, the social worker has (several)
meetings with the person with MS, the caregivers and, if indicated, the
professional home caregivers. Individual meetings can be organised in the
social workers office. Home visits are possible on various indications.
In general, two rehabilitation professionals participate, namely the social
worker and the occupational therapist.
Persons with MS, their families and professional home caregivers can
be invited to a roundtable conference in the MS centre, with all the
rehabilitation disciplines represented by the relevant professionals, including
the rehabilitation doctor.
Persons with MS and, if possible, their caregivers, are fully informed and
involved in all actions that are undertaken.
Continuity of care is a very special point of attention.
Networking between the rehabilitation team and the home care team is
a remaining challenge. Social workers and other professionals of the MS
Society have a special and privileged place in this collaboration.
Optimal social (re)integration is the main goal of every interdisciplinary
rehabilitation effort. Since MS affects the person and his/her entire social
system, all actors have to be involved in the management of care.
Persons with MS, their partners and families have a strong need for
information and support, in order to tap all sources that could be useful to
overcome the social consequences of their illness and to improve or at least
maintain their role and place in society.
Social worker in a interdisciplinary MS rehabilitation team should therefore
focus on the person with MS and family needs in a wide range of domains:
family situation and relationships, work and occupation, finances and
social security systems, housing, professional and non-professional home
care (with special attention for the burdens and needs of non-professional
caregivers), transportation problems, professional healthcare including
outpatient rehabilitation programmes. A continuity of care, exchange
of information and communication with home care professionals are
cornerstones in the long-term management of MS, obviously in consultation
with the person with MS and his/her family.
Problem analysis and description
A standardised social file is used to screen the situation in a uniform way.
Not only the patients view is taken into account, but special attention is
given to the needs of the non-professional caregiver and, if indicated, to
problems of/with professional home caregivers and healthcare professionals.
At this moment, the Environmental Status Scale is still used as the
screening instrument, but it is not very satisfying. Experiments to develop a
more appropriate evaluating instrument are going on.
Information, counselling, support and guidance: meeting
social problems
The person with MS and his/her family always meet a social worker on
admission at the hospital for an inpatient rehabilitation treatment or at the
start of their outpatient rehabilitation. Often, patients are already acquainted
with the social worker, because of an earlier hospitalisation, or a meeting
after a medical consultation, and this may reduce tension and anxiety of the
person with MS as well as for his/her family: they get the opportunity to ask
questions, to express their feelings towards the admission or towards the
medical and/or social problems that caused the need for hospitalisation.
- Relationships and family problems: as well as the information and needs
of the person with MS, ongoing attention for the burden of the caregiver
is needed. Particularly during hospitalisation, the social worker of the
rehabilitation team has to take initiatives to involve the partner or other non-
professional caregivers in fixing targets of rehabilitation, both in the short
term as well as long term. Patients may need referral to, or assistance in
consulting external judicial services.
- Work: Persons with MS may need guidance to make decisions about
outing their diagnosis towards their employer, they may need information
about governmental programmes and about their legal rights or they may
ask to contact their employer. Giving up a job has a lot of financial and
social consequences, which need to be discussed extensively before a well-
grounded decision can be made.
- Homecare: the social worker has to evaluate the needs of persons with MS
and caregivers, which are not necessarily compatible. Negotiation is often
required, with persons with MS as well as with their families, as with home
care services and healthcare professionals in the community. In order to
avoid long-term problems, a good job description and correct agreements
between all those involved are needed, concerning the timing as well as the
content of the job. The mediation of the social worker may be requested
when (re)discussing these topics.
- Finances and social security interventions:
social policy is not always very transparent and often, persons with MS do
not automatically obtain the social benefits they are eligible for. Information
is the first step, but is not always sufficient. Persons with MS and their
families very often appeal to the social worker of the rehabilitation team to
give support and practical help with applications for different social benefits
to different departments, resulting from various and different legal measures.
Multidisciplinary reports and extensive motivation reports are often needed
to support these applications. When needed, the social worker will negotiate
the attribution of the social benefit with the department handling the
application
- Technical aids and home adaptation:
in co-operation with the occupational therapist, the social worker of the
team gives information and advice concerning the best choice, taking into
account the financial implications and legal interventions, the expectations
and aversions of persons with MS and their families, the degree of
acceptance and long-term management of MS. If indicated, home care
professionals are also involved in decision-making.
Informal and formal discussions, round tables and home visits
Interdisciplinary team meetings are an indispensable tool to get informed
about all relevant aspects of the condition of a person with MS and to
inform other rehabilitation professionals about relevant social and family
related topics. In order to realise his objectives, the social worker has (several)
meetings with the person with MS, the caregivers and, if indicated, the
professional home caregivers. Individual meetings can be organised in the
social workers office. Home visits are possible on various indications.
In general, two rehabilitation professionals participate, namely the social
worker and the occupational therapist.
Persons with MS, their families and professional home caregivers can
be invited to a roundtable conference in the MS centre, with all the
rehabilitation disciplines represented by the relevant professionals, including
the rehabilitation doctor.
Persons with MS and, if possible, their caregivers, are fully informed and
involved in all actions that are undertaken.
Continuity of care is a very special point of attention.
Networking between the rehabilitation team and the home care team is
a remaining challenge. Social workers and other professionals of the MS
Society have a special and privileged place in this collaboration.
At an advanced stage persons with Multiple Sclerosis develop severe disability and
become dependent in both mobility and activities of daily life.
Adequate and appropriate community care services including home adaptations,
assistive technology such as mobility equipment and A.D.L. aids should be available.
For the most disabled provision of long term facilities should be available.
Provision of respite care and support of the caregiver will lessen the burden on the
family members.
The health needs of persons with Multiple Sclerosis, which are comparable across
national boundaries, can be addressed in the different nations by health systems
which vary in their organisation, funding and population distribution.
The rehabilitation service must guarantee internal integration among professionals
and must be also integrated with all other existing health services relevant for Multiple
Sclerosis (hospital departments, outpatient clinics, community services) as a person
with Multiple Sclerosis may access inpatient, outpatient and community services to
different degrees, at different stages of the illness.
Delivered services should be of high quality but as accessible as possible, continuously
adapted to the needs of the person with Multiple Sclerosis and should be flexible,
timely, evidence and experience based.
Delivery of services for the person with Multiple Sclerosis and their carers should be
accessible and regionally equal (home-based if the quality is sustained).
After establishing a rapid and clear diagnosis by a neurologist, with special knowledge
in Multiple Sclerosis, each Person with Multiple Sclerosis should be referred to a
specialist neurological rehabilitation team which should recognise the varying and
unique needs and expectations of each person with Multiple Sclerosis.
As a minimum, the specialist neurological rehabilitation team should include as
integral members health care professionals of the following disciplines: neurology,
rehabilitation medicine, nursing, physiotherapy, clinical psychology, social counselling,
occupational therapy and speech therapy.
The specialist neurological rehabilitation team and other health care professionals
as being involved with the person with Multiple Sclerosis and his family should work
together towards common agreed goals which should cover short-term and longer-
term outcomes. According to the degree of impairment and disability these goals
should be evaluated in the initial, early, later and advanced stages.
At the moment of diagnosis information should be available regarding the disease, its
effects and potential impact on the individual, the family and the social environment.
Educational programms should be instituted to address this area.
Each person with Multiple Sclerosis should at that moment benefit from emotional
support by a clinical psychologist. During the early stage, provision of support and
informed advice about relationships, employment, symptoms and impairment, housing
and financial planning should be available.
When, at a later stage, the person with Multiple Sclerosis has established more
impairment resulting in both disability and handicap, the person with Multiple
Sclerosis should have access to and benefit from a focused symptom and disability
management. Recurring barriers to employment, education and transportation should
be eliminated, avoiding discrimination on the basis of disability.
41
At an advanced stage persons with Multiple Sclerosis develop severe disability and
become dependent in both mobility and activities of daily life.
Adequate and appropriate community care services including home adaptations,
assistive technology such as mobility equipment and A.D.L. aids should be available.
For the most disabled provision of long term facilities should be available.
Provision of respite care and support of the caregiver will lessen the burden on the
family members.
The health needs of persons with Multiple Sclerosis, which are comparable across
national boundaries, can be addressed in the different nations by health systems
which vary in their organisation, funding and population distribution.
The rehabilitation service must guarantee internal integration among professionals
and must be also integrated with all other existing health services relevant for Multiple
Sclerosis (hospital departments, outpatient clinics, community services) as a person
with Multiple Sclerosis may access inpatient, outpatient and community services to
different degrees, at different stages of the illness.
Delivered services should be of high quality but as accessible as possible, continuously
adapted to the needs of the person with Multiple Sclerosis and should be flexible,
timely, evidence and experience based.
Delivery of services for the person with Multiple Sclerosis and their carers should be
accessible and regionally equal (home-based if the quality is sustained).
After establishing a rapid and clear diagnosis by a neurologist, with special knowledge
in Multiple Sclerosis, each Person with Multiple Sclerosis should be referred to a
specialist neurological rehabilitation team which should recognise the varying and
unique needs and expectations of each person with Multiple Sclerosis.
As a minimum, the specialist neurological rehabilitation team should include as
integral members health care professionals of the following disciplines: neurology,
rehabilitation medicine, nursing, physiotherapy, clinical psychology, social counselling,
occupational therapy and speech therapy.
The specialist neurological rehabilitation team and other health care professionals
as being involved with the person with Multiple Sclerosis and his family should work
together towards common agreed goals which should cover short-term and longer-
term outcomes. According to the degree of impairment and disability these goals
should be evaluated in the initial, early, later and advanced stages.
At the moment of diagnosis information should be available regarding the disease, its
effects and potential impact on the individual, the family and the social environment.
Educational programms should be instituted to address this area.
Each person with Multiple Sclerosis should at that moment benefit from emotional
support by a clinical psychologist. During the early stage, provision of support and
informed advice about relationships, employment, symptoms and impairment, housing
and financial planning should be available.
When, at a later stage, the person with Multiple Sclerosis has established more
impairment resulting in both disability and handicap, the person with Multiple
Sclerosis should have access to and benefit from a focused symptom and disability
management. Recurring barriers to employment, education and transportation should
be eliminated, avoiding discrimination on the basis of disability.
References
43
44 References
General items
Beatty PW et al.
Access to health care services among people with chronic or disabling condition: patterns and predictors.
Arch Phys Med Rehabil 2003; 84(10):1417-25.
Benbow CL, Koopman WJ.
Clinical-based needs assessment of individuals with multiple sclerosis and significant others: implications for
program plannig psychological needs. Rehabil Nurs 2003; 28(4):109-16.
Blake DJ. Bodine C.
An overview of assistive technology for persons with multiple sclerosis. J Rehabil Res Dev. 2002; 39(2): 299-312.
Burks J.S. Johnson K.P.
Multiple Sclerosis Diagnosis, Medical Management and Rehabilitation. Ed. Demos New York, 2000, 598.
Carton H et al.
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Appendix
49
51 50 Appendix
The process for establishing the Recommendations
In 2003 the European Multiple Sclerosis Platform started a project aiming to
produce a professional consensus document concerning Recommendation for
Rehabilitation in Multiple Sclerosis. This document should be a useful tool to
promote widely agreed best practices in rehabilitation for persons with Multiple
Sclerosis in the European Union (and within the European countries) and also to
support requests to national and local Governments and Institutions to improve
services for persons with Multiple Sclerosis.
In order to provide the basic data for the implementation of the document
and to have a general overview of the rehabilitation services, which are
currently available and accessible around Europe, in August 2003 a preliminary
questionnaire was sent to every national MS Society.
Overview results of this European survey on Rehabilitation services for Multiple
Sclerosis are enclosed in this appendix. A full set of results and significant tables
is available on request at EMSP secretariat.
The present document concerning the Recommendations was drafted
during Autumn 2003 by a panel of professionals and experts in the field of
rehabilitation from both Western and Eastern countries.
The draft document was discussed and implemented in a seminar held in
Athens in December 2003, attended by professionals and officers representing
rehabilitation Centres and National MS Societies in Europe.
This final version of the present document was completed in the following
months and edited in October 2004.
Appendix 1
J
51 Appendix 50 Appendix
Appendix 1
Editors
Pierre Ketelaer, Belgium
Mario A. Battaglia, Italy
Advisory Committee
Mario A. Battaglia, M.D., Professor of Hygiene, University of Siena, Italy
Chairman of the Italian MS Society, Genoa, Italy
Pierre Ketelaer, M.D., Head of Rehabilitation, (ret.), National MS Centre, Melsbroek, Belgium
Jrg Kesselring, M.D., Chairman of International Medical and Scientific Board of the International
Federation of Multiple Sclerosis Societies; Head of the Department of Neurorehabilitation, Valens
Rehabilitation Centre, Switzerland
Professor Alan J. Thompson, M.D., Institute of Neurology, University College of London, U.K.
Claude Vaney, M.D., President of RIMS Executive Board, Medical Director of Berner Klinik Montana,
Switzerland
Main contributors
Battaglia Mario A., M.D., Professor of Hygiene, University of Siena, Italy
De Ridder Dirk, M.D., Ph. D. National MS Centre, Melsbroek, Belgium
Duportail Marijke, Occupational therapist, National MS Centre, Melsbroek, Belgium
Ganty Guy, Speech therapist, National MS Centre, Melsbroek, Belgium
Gross-Paju Katrin M.D., Ph.D., MS Centre, West Tallinn Central Hospital, Tallinn, Estonia
Hmlinen Pivi, Ph. D. Neuropsychologist, Masku Neurological Rehabilitation Centre, Finland
Jnsson Agnete, Ph. D. Neuropsychologist, Neurological Department, MS-Clinic, Rigshospitalet, Denmark
Ketelaer Pierre, M.D., Head of Rehabilitation, (ret.), National MS Centre, Melsbroek, Belgium
Lopes de Carvalho Maria Laura, M.D., Italian MS Society Rehabilitation Centre, Genoa, Italy
Motta Roberta, Rehabilitation Nurse, Italian MS Society Rehabilitation Centre, Genoa, Italy
Orsi Enrica, M.D., National Officer, Italian MS Society, Genoa, Italy
Petersen Thor M.D., Neurological Department, Aarhus Kommunnehospital, Aarhus, Denmark
Van Asch Paul, Physiotherapist, National MS Centre, Melsbroek, Belgium
Verdoodt Rina, Social worker, National MS Centre, Melsbroek, Belgium
53 52 Appendix
Professor Alan J. Thompson, M.D.
Claude Vaney, M.D.
Switzerland
Participants in the implementation seminar
Olga Arkhipova, MS Foundation, St Petersburg, Russia
Efstathios Athanasiadis, Physioterapist, Greek MS Society, Thessaloniki, Greece
Mario A. Battaglia, M.D., Professor of Hygiene, University of Siena, Italy
Mateja De Reya, Slovenian MS Society, Ljubljana, Slovenia
Michael Dineen, MS Society Ireland, Dublin, Ireland
Aldona Droseikiene, Lithuanian MS Union, Vilnius, Lithuania
Grzegorz Galuszka, Master of Rehabilitation, Polish MS Society, Warsaw, Poland
Oddbjoorg Gangaas, Occupational Therapist, Norwegian MS Society, Oslo, Norway
Guy Ganty, Speech Therapist, National MS Centre, Melsbroek, Belgium
Katrin Gross-Paju, M.D., Neurologist, MS Centre, West Tallinn Central Hospital, Tallinn, Estonia
Tuula Haukka-Wacklin, Physiotherapist, Finnish MS Society, Masku, Finland
Arja Hill, The Swedish Association of Persons with Neurological Disabilities-NHR, Stockholm, Sweden
Susannah Hughes, MS Society of Great Britain and Northern Ireland, London, U.K.
Juliana Ilencikova, Slovak MS Union, Trnava, Slovakia
Bente Juul Rttig, Social Worker, Danish MS Society, Copenhagen, Denmark
Peter Kauffeldt, Danish MS Society, Copenhagen, Denmark
Pierre Ketelaer, M.D., Head of Rehabilitation, (ret.), National MS Centre, Melsbroek, Belgium
Aleksandras Kirjazovas, M.D., Neurologist, Lithuanian MS Union, Vilnius, Lithuania
Beatrika Koncan-Vracko, M.D., Neurologist, Slovenian MS Society, Ljubljana, Slovenia
Mariusz Kowalewski, M.D., Neurologist, Polish MS Society Warsaw, Poland
Alexej Kubek, Slovak MS Union, Trnava, Slovakia
Brita Loevendal, Social Worker, Danish MS Society, Copenhagen, Denmark
Maria Laura Lopes de Carvalho, M.D., Physiatrist, Italian MS Society, Genoa, Italy
Adam Michel, German MS Society, Hannover, Gemany
Kajsa Momyr, Norvegian MS Society, Oslo, Norway
Antonella Moretti, Italian MS Society, Genoa, Italy
Chris Moutzoukis, M.D., Pshycologist, Greek MS Society, Thessaloniki, Greece
Mirsad Muftic, M.D., Rehabilitation Medicine, MS Society of Bosnia and Herzegovina, Sarajevo, Bosnia
Stig Norrby, The Swedish Association of Persons with Neurological Disabilities-NHR, Stockholm, Sweden
Izabela Odrobinska, Polish MS Society, Warsaw, Poland
Professor Anastasios Orologas, M.D., Neurologist, Greek MS Society, Thessaloniki, Greece
Enrica Orsi, M.D., Italian MS Society, Genoa, Italy
Thor Petersen, M.D., Neurologist, Aarhus Kommunehospital, Aarhus C, Denmark
Dorothea Pitschnau-Michel, German Ms Society, Hannover, Germany
Constantin Radu, M.D., Neurologist, Romanian MS Society, Oradea, Romania
Kamila Rasova, M.D., Neurorehabilitation Specialist, Czech MS Society, Prague, Czech Republic
Robert Schlathau, Austrian MS Society, Vienna, Austria
Adem Svraka, MS Society of Bosnia and Herzegovina, Sarajevo, Bosnia
Elsa Teilimo, Finnish MS Society, Masku, Finland
Professor Alan J. Thompson, M.D., Institute of Neurology, University College of London, U.K.
Paul Van Asch, Physiotherapist, National MS Centre, Melsbroek, Belgium
Claude Vaney, M.D., President of RIMS Executive Board, Medical Director of Berner Klinik Montana,
Switzerland
Professor Karl Vass, M.D., Universittsklinik fr Neurologie AKH Wien, Vienna, Austria
Guennady Veselov, MS Foundation, St Petersburg, Russia
Aliki Vrienniou, Greek MS Society, Thessaloniki, Greece
Michael Willis, MS Society of Great Britain and Northern Ireland, London, U.K.
Mario A. Battaglia, M.D.
Pierre Ketelaer, M.D.
55 54 Appendix
Rehabilitation services throughout Europe
In September 2003 the European Multiple Sclerosis Platform (EMSP) conducted
a screening of the available rehabilitation services for Multiple Sclerosis at the
European level, before elaborating the Recommendations on Rehabilitation
Services for Persons with Multiple Sclerosis in Europe.
Therefore a questionnaire was drawn up and subsequently sent to the
representatives of the 15 countries members of the European Union in 2003,
to the representatives of the 10 countries entering the European Union in May
2004 and to other 8 European countries not yet member of the EU. Each of
these countries has an active National MS Society.
The total number of countries answering the questionnaire is 32 and
specifically: countries of the enlarged EU: Austria, Belgium, Denmark, Finland,
France, Germany, Greece, Italy, Ireland, Luxembourg, Netherlands, Portugal,
Spain, Sweden, United Kingdom, Czech Republic, Estonia, Hungary, Latvia,
Lithuania, Malta, Poland, Slovakia, Slovenia (24 countries, only Cyprus is
missing). Other European countries: Belarus, Bosnia-Herzegovina, Georgia,
Norway, Romania, Russia, Serbia Montenegro, Switzerland.
The questionnaire included several aspects of health organization, both general
and specifically related to rehabilitation.
The first group of items was related to the health care systems and health
care services for multiple sclerosis: the existence of a national health service
or governmental reimbursement system, presence of MS departments and/or
general neurological departments, the availability of day care and respite care
for MS persons.
The second group of items concerned the presence of specific legislation in
each nation: legislation for disabled, on building accessibility, on facilitated
transportation, availability of financial support for pension allowance, social
integration, medication, rehabilitation, social services, community care by
professional.
The third group of items concerned the availability of information on MS within
healthcare services, also by a free telephone help line.
The fourth and more specific group of items concerns the availability of
rehabilitation services and rehabilitation setting (in patient, out patient,
community), long term rehabilitation, technical aids and the presence of a
rehabilitation team.
Results
As regards the general organization of health care systems in the 24 countries
(Cyprus not included) of the enlarged EU, 13 nations (54,2%) have a National
Health Service totally covering health care expenses for citizens, while in 11
nations (45,8%) the national health care system covers them only partially
and citizen have to contribute for the remaining part. However, in most of the
countries, also when declaring total coverage, there can be regional inequalities
or partial application of the law. In EU countries services for diagnostics, therapy
95.8 (23) 66.7 (16)
79.2 (19) 45.8 (11)
75.0 (18) 33.3 (8)
41.7 (10) 12.5 (3)
66.7 (16) 58.3 (14)
66.7 (16) 29.2 (7)
66.7 (16) 45.8 (11)
Out-patient In the community
(at home)
Appendix 2
(%/n)
55 Appendix 54
and follow up of MS are available in the general neurological departments
(83,3%) and only in 58,3% of countries specific MS departments are available.
Respite care and day care are available respectively in 62,5 and 75,0% of the EU
countries, but only 5 (20,8%) have facilities for respite care and day care centres
specific for MS persons. A specific legislation for the disabled is provided in
83,3% of EU countries, though no nation has a specific legislation for persons
with MS. A special legislation on building accessibility is active in 83,3 % of the
countries and rules for facilitated transportation are active only in 70,8% of
cases. Financial support for pension allowances (83,3%), social services (75,0
%), rehabilitation services (70,8%), medication (91,7%) and social integration
(75,0%) are available in most of the countries.
In 62,5% of the EU countries disabled are granted a special financial support to
buy home help service (health and social), whereas in 70,8% of cases
(17 countries) such services are available and directly organized by health
systems or community services.
The questionnaire focused specifically on rehabilitation services and their
availability in hospitals, in rehabilitation centres and through home help
services. In a special table of the questionnaire all services had to be indicated,
subdividing them into three separate sections according to their presence in
hospitals, rehabilitation centres and at home.
Each country had to indicate the services available and their setting.
Rehabilitation services were subdivided into 7 major categories:
physiotherapy, occupational therapy, psychology, neuropsychological training,
social counselling, speech therapy, rehabilitative nursing.
Within each of them it was possible to indicate which specific services were
available: for example the section dedicated to physiotherapy contained
kinesitherapy, manual therapy, instrumental therapy and others.
The availability (in a country) of a certain category of services in a specific
setting does not mean that all specific services are available.
Table 1 illustrates the availability of rehabilitation services in hospitals
(in patient), out patient setting and at home. You can notice that in 23 EU
countries physiotherapy is available, while lower are the percentages of
countries where other named services are available. In detail (see table n.2) most
of the countries (20 countries equal to 83,3%) have kinesitherapy available, but
all the other specific services are variously distributed.
Urorehabilitation is not evenly and widespreadly distributed, although it is basic
for persons with MS. Occupational therapy is available in hospitals for
Physiotherapy 95.8 (23) 95.8 (23) 66.7 (16)
Occupational therapy 66.7 (16) 79.2 (19) 45.8 (11)
Psychology 75.0 (18) 75.0 (18) 33.3 (8)
Neuropsychological training 58.3 (14) 41.7 (10) 12.5 (3)
Social counselling 58.3 (14) 66.7 (16) 58.3 (14)
Speech therapy 62.5 (15) 66.7 (16) 29.2 (7)
Rehabilitative nursing 70.8 (17) 66.7 (16) 45.8 (11)
Services In-patient Out-patient In the community
(hospitalised) (rehab. centre) (at home)
Appendix 2
tab. 1. Availability of reahabilitation services in 24 countries of EU (%/n)
57 56 Appendix
Fine motor activities to enhance reduced hand function 54.2 (13) 66.7 (16) 33.3 (8)
Activities Daily Living (ADL) training 45.8 (11) 62.5 (15) 37.5 (9)
Training apartment/bath/kitchen 33.3 (8) 54.2 (13) 29.2 (7)
Informative/educational programmes (1) 41.7 (10) 58.3 (14) 20.8 (5)
Counselling for environmental modification 41.7 (10) 54.2 (13) 54.2 (13)
Testing and training for using technical aids 54.2 (13) 66.7 (16) 33.3 (8)
Counselling in work ability or adaptive strategies to keep work 54.2 (13) 62.5 (15) 37.5 (9)
Terapy Hospital Out-patient Home service
service
16 countries of the enlarged EU (66,7%), (see table 1); in table 3 the offered
services are detailed: fine motor activities to enhance reduced hand function
and testing/training for using technical aids are available in 13 countries of
the EU, whereas the other types of occupational therapy are less widespread.
Regarding rehabilitation centres out patient services are illustrated in table
1. Physiotherapy is available in 95,8% of the countries of the enlarged EU;
occupational therapy is available in 19 cases (79,2%). The less diffused service is
neuropsychological rehabilitation (10 nations equal to 41, 7%).
Table 2 illustrates in detail each specific service of physiotherapy services: the
most widely widespread are kinesitherapy (91,7%) and urorehabilitation therapy
available in 75% of countries.
Table 3 indicates the specific services of occupational therapy available in
rehabilitation centres: in general all these services are more available in
rehabilitation centres than in hospitals.
Finally, table 1 indicates the services available at home. In this setting the service
is available in a lower percentage of countries (66,7% equal to 16 countries)
specifically for physiotherapy and even lower for the other major categories.
62.5 (15)
70.8 (17)
45.8 (11)
20.8 (5)
16.7 (4)
25.0 (6)
(1)
(education to fatigue management;
education programmes to reduce effects of disability on the family, workplace, society)
Kinesitherapy (neuro-rehabilitation techniques) 83.3 (20) 91.7 (22) 41.7 (10)
Instrumental therapy 58.3 (14) 62.5 (15) 20.8 (5)
Manual therapy 66.7 (16) 70.8 (17) 54.2 (13)
EMG-Biofeedback 37.5 (9) 29.2 (7) 0
Electrotherapy 54.2 (13) 62.5 (15) 8.3 (2)
Hydrotherapy (pool) 45.8 (11) 66.7 (16) 12.5 (3)
Cryotherapy (or ice therapy) 33.3 (8) 41.7 (10) 20.8 (5)
Aerobic training 25.0 (6) 54.2 (13) 41.7 (10
Respiratory training 66.7 (16) 54.2 (13) 33.3 (8)
Uro-rehabilitation (pelvic floor exercises, electrotherapy,ecc) 62.5 (15) 75.0 (18) 20.8 (5)
Services In-patient Out-patient In the community
(hospitalised) (rehab. centre) (at home)
tab. 2 . Details on availability of physiotherapy techniques in 24 countries
of enlarged EU (%/n)
tab. 3 . Details on availability of occupational therapy services in 24 countries of
enlarged EU (%/n)
/n)
%(n)
79.2 (19)
87.5 (21)
79.2 (19)
79.2 (19)
62.5 (15)
/n)
%(n)
57 Appendix 56
66.7 (16) 33.3 (8)
62.5 (15) 37.5 (9)
54.2 (13) 29.2 (7)
58.3 (14) 20.8 (5)
54.2 (13) 54.2 (13)
66.7 (16) 33.3 (8)
62.5 (15) 37.5 (9)
Terapy Out-patient Home service
service
Rehabilitation doctor 66.7 (16)
Neurologist 62.5 (15)
Physiotherapist 79.2 (19)
Occupational therapist 70.8 (17)
Psychologist 66.7 (16)
Neuropsychologist 41.7 (10)
Social Worker 66.7 (16)
Speech therapist 62.5 (15)
Nurse 70.8 (17)
Urologist 45.8 (11)
Sexuologist 20.8 (5)
Gynaecologist 16.7 (4)
Podiatrist 25.0 (6)
(1)
41.7 (10)
20.8 (5)
Manual therapy 54.2 (13)
EMG-Biofeedback 29.2 (7) 0
Electrotherapy 8.3 (2)
Hydrotherapy (pool) 12.5 (3)
20.8 (5)
Aerobic training 41.7 (10
Respiratory training 33.3 (8)
20.8 (5)
Services In the community
(at home)

In tables 2 and 3 you find the details relevant to physiotherapy services and to
occupational therapy provided at home.
They were asked also to indicate the services still to be organised in each
country and their priority.
Eleven nations answered to this question, half of them indicated their need for
more home services: it was pointed out particularly in countries where those
services are not uniformly provided in the various regions.
Only 50% of nations have rehabilitation available in the early stage of MS as it
should be. In the majority of cases rehabilitation sessions start when a specific
disability appears (21 countries, equal to 87,5%).
An interdisciplinary team offering the person with MS the various rehabilitation
services is provided in 19 countries of the enlarged EU (79,2%).
tab. 4 . Rehabilitation team professionals in 24 countries of enlarged EU (%/n)
Professional %(n) Professional %(n)
Communication 75.0 (18)
Mobility 100.0 (24)
Bladder/bowel 87.5 (21)
Respiratory function 70.8 (17)
Posture 62.5 (15)
Activities of daily living 79.2 (19)
Standing devices 87.5 (21)
Nutrition 79.2 (19)
Domestic environmental modification 79.2 (19)
Work environmental modification 62.5 (15)
tab. 5 . Availability of technical aids in 24 countries of enlarged EU (%/n)
Aids %(n) Aids %(n)
The composition of the rehabilitation team is illustrated in table 4: percentages
relevant to the different specialists change considerably. Aids (see table 5)
are common in the countries of the enlarged EU: mobility aids are available
everywhere, in 79,2% of cases are available nutrition aids and activities of
daily living aids; in 75% of cases are available communication aids, in 87,5%
are available bladder and bowel aids. Only in 20,5% of cases expenses are fully
covered by the Government, while in 79,2% of cases the Government partially
covers them and persons with MS are requested a contribution.
In 79,2% of the countries of the enlarged EU it is possible to have a modification
of domestic environment to adapt it to the disable needs, but only in 3 nations
(Finland, Great Britain and Denmark) the expenses are totally covered by
the National Health System, while in all the remaining countries citizens are
expected to contribute variably to the expenses.
The technology to adapt the work place to persons with disability is less
diffused: it is available in 15 countries (62,5% of cases).
The relevant expenses are covered by employers in 66,7% of cases.
58 Appendix
Malta Declaration
European Multiple
Sclerosis Platform
DECLARATION
by the participants of Meeting of
the European Multiple Sclerosis Platform, Malta, May 2003
Acknowledging the dramatic differences across Europe faced by citizens affected by Multiple Sclerosis,
we, representatives of EMSP, call for treatments and services that
. recognise personal dignity
. seek to maximise personal potential
. enable people affected by MS to be fully involved in and influence decisions
about service provision
. take account of the full range of physical, cognitive, emotional and social
implications of being affected by MS
. meet agreed European quality standards
. are subject to continual evaluation and improvement
. are accessible and timely
. are delivered by appropriately skilled and experienced professionals
. are provided equitably and efficiently, irrespective of geography or
organisational professional boundaries
To achieve these goals, we affirm our commitment to:
. Working collaboratively with the European Institutions programmes and policies on health, social
inclusion and non discrimination to promote the principle, and practice of equal treatment and services
for people affected by MS across Europe
. Supporting concerted action and co-operation with relevant European medical NGOs and
governmental agencies for the implementation of
European Wide Guidelines on Therapies for People affected by MS
. Holding high level discussions with the EU Institutions to explore, in the framework of the
Convention on the future of Europe, new EU competencies that can advance our
endeavours for
. more MS related research on national, European and world-wide level
. better awareness on the importance of continued employment for persons with MS
. achieving high quality equitable treatment and services for all Europeans affected by MS
. universal access to public buildings and services throughout Europe
. Engaging in a major awareness campaign across Europe to ensure stakeholders at all levels
support our drive towards a better quality of life and brighter future for
every European affected by MS.
This declaration was adopted on May 3rd, 2003 in Malta.
It constitutes the central message from 29 national MS Societies represented by
the European MS Platform to fellow Europeans in this, the European Year of
People with Disabilities.
Malta Declaration
European Multiple
Sclerosis Platform
DECLARATION
by the participants of Meeting of
the European Multiple Sclerosis Platform, Malta, May 2003
Acknowledging the dramatic differences across Europe faced by citizens affected by Multiple Sclerosis,
we, representatives of EMSP, call for treatments and services that
. recognise personal dignity
. seek to maximise personal potential
. enable people affected by MS to be fully involved in and influence decisions
about service provision
. take account of the full range of physical, cognitive, emotional and social
implications of being affected by MS
. meet agreed European quality standards
. are subject to continual evaluation and improvement
. are accessible and timely
. are delivered by appropriately skilled and experienced professionals
. are provided equitably and efficiently, irrespective of geography or
organisational professional boundaries
To achieve these goals, we affirm our commitment to:
. Working collaboratively with the European Institutions programmes and policies on health, social
inclusion and non discrimination to promote the principle, and practice of equal treatment and services
for people affected by MS across Europe
. Supporting concerted action and co-operation with relevant European medical NGOs and
governmental agencies for the implementation of
European Wide Guidelines on Therapies for People affected by MS
. Holding high level discussions with the EU Institutions to explore, in the framework of the
Convention on the future of Europe, new EU competencies that can advance our
endeavours for
. more MS related research on national, European and world-wide level
. better awareness on the importance of continued employment for persons with MS
. achieving high quality equitable treatment and services for all Europeans affected by MS
. universal access to public buildings and services throughout Europe
. Engaging in a major awareness campaign across Europe to ensure stakeholders at all levels
support our drive towards a better quality of life and brighter future for
every European affected by MS.
This declaration was adopted on May 3rd, 2003 in Malta.
It constitutes the central message from 29 national MS Societies represented by
the European MS Platform to fellow Europeans in this, the European Year of
People with Disabilities.
60 Appendix
EMSP, European Multiple Sclerosis Platform
The European Multiple Sclerosis Platform
presently consists of 30 National MS Societies representing their countries.
EMSP was founded more than 10 years ago and is registered as non profit organisation under
Belgian law since 16th August 2000.
EMSP is governed by its biennal Council Meeting which delegates its power to an Executive
Committee for the period between two Council meetings.
EMSPs Council presently consists of one delegate of each of the following countries: Austria,
Belarus, Belgium, Bosnia - Hercegovina, Czech Republic, Denmark, Finland, France, Germany,
Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway,
Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland and UK.
The European Ms Platform main aims are:
- to promote actively the interests of people affected by Multiple Sclerosis on an European level
- to act as a focal point of liaison with relevant EU bodies
- to facilitate joint programmes and skill shares between Multiple Sclerosis Societies
- to procure and disseminate information being of interest for our members
- to encourage research related to MS both in medical and non-medical areas
Moreover, some recent activities of the EMSP have been:
- Fighting MS in CEE countries: a support program for emerging MS patient groups in Central
and Eastern Europe
- An International conference in Prague, from 30 April to 2 May 2004, on MS anemployment.
- The First European MS Awareness Day (June 25th 2002) in the Parliament formed a major
part of our campaign for equal access to high quality treatment and care for persons Ms
throughout Europe.
This event resulted in the founding of an Ms Interest Group within the European Parliament,
which - in close co-operation with EMSP and the Parliament Disability Intergroup - studies
and proposes measures to improve the independence of people with MS and promote their
participation in society.
- The approval by the European Parliament, on 18 December 2003, of the Report on petition
842/2001 concerning the effects of discriminatory treatment afforded to persons with Multiple
Sclerosis, within the European Union (2003/2173 (INI)) was the result of a Petition by Louise McVay,
a person with MS from UK, discussed by the UE Petition Committee and followed by the Report to
the Parliament presented by Uma Aaltonen, MEP.
Contact Information
Avenue E.Plasky 173/11B-1030 Brussels - Belgium
tel.: 32-(0)2-305 80 12 fax: 32-(0)2-305 80 11
e-mail : ms-in-europe@pandora.be
European Multiple
Sclerosis Platform
The European Multiple Sclerosis Platform
presently consists of 30 National MS Societies representing their countries.
EMSP was founded more than 10 years ago and is registered as non profit organisation under
Belgian law since 16th August 2000.
EMSP is governed by its biennal Council Meeting which delegates its power to an Executive
Committee for the period between two Council meetings.
EMSPs Council presently consists of one delegate of each of the following countries: Austria,
Belarus, Belgium, Bosnia - Hercegovina, Czech Republic, Denmark, Finland, France, Germany,
Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway,
Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland and UK.
The European Ms Platform main aims are:
- to promote actively the interests of people affected by Multiple Sclerosis on an European level
- to act as a focal point of liaison with relevant EU bodies
- to facilitate joint programmes and skill shares between Multiple Sclerosis Societies
- to procure and disseminate information being of interest for our members
- to encourage research related to MS both in medical and non-medical areas
Moreover, some recent activities of the EMSP have been:
- Fighting MS in CEE countries: a support program for emerging MS patient groups in Central
and Eastern Europe
- An International conference in Prague, from 30 April to 2 May 2004, on MS anemployment.
- The First European MS Awareness Day (June 25th 2002) in the Parliament formed a major
part of our campaign for equal access to high quality treatment and care for persons Ms
throughout Europe.
This event resulted in the founding of an Ms Interest Group within the European Parliament,
which - in close co-operation with EMSP and the Parliament Disability Intergroup - studies
and proposes measures to improve the independence of people with MS and promote their
participation in society.
- The approval by the European Parliament, on 18 December 2003, of the Report on petition
842/2001 concerning the effects of discriminatory treatment afforded to persons with Multiple
Sclerosis, within the European Union (2003/2173 (INI)) was the result of a Petition by Louise McVay,
a person with MS from UK, discussed by the UE Petition Committee and followed by the Report to
the Parliament presented by Uma Aaltonen, MEP.
Contact Information
Avenue E.Plasky 173/11B-1030 Brussels - Belgium
tel.: 32-(0)2-305 80 12 fax: 32-(0)2-305 80 11
e-mail : ms-in-europe@pandora.be
European Multiple
Sclerosis Platform
62 Appendix
R.I.M.S. Rehabilitation in Multiple Sclerosis
Rehabilitation in Multiple Sclerosis - RIMS - a network of
European MS Centres that promotes the collaboration of
rehabilitation professionals in Europe and across the world.
RIMS, with membership in over 20 countries, is a dynamic,
interdisciplinary group of MS healthcare professionals, bringing
together experts from throughout the world for conferences,
workshops and collaborative research.
RIMS Special Interest Groups organise seminars and multi-
centre research projects on specific topics of interest for clinical
and rehabilitation specialists. Current Special Interest Groups
include Mobility, Bladder, Bowel & Sexual Disorders, Psychology
& Neuropsychology, Communication & Swallowing, Health Care
Organization & Service Delivery and Occupation & Assistive
Technology.
RIMS also offers a bi-annual newsletter and a website for its members.
The International Journal of MS Care is the official journal of RIMS, in
partnership with the Consortium of Multiple Sclerosis Centers.
Contact Information
e-mail at ms-mels@rims.be
web site: www.rims.be
Secretariat of RIMS:
National MS Centre, Melsbroek (B)
Tel. +32 2 752 96 40, Fax +32 2 751 52 77
Copyright EMSP, European Multiple Sclerosis Platform, 2008
All rights reserved. No part of this document may be used,
reproduced or translated without the prior permission of EMSP.
The rights of individual authors contributing to this document remain intact.
In case of questions, please contact secretariat@emsp.org
CONTACT Rue Auguste Lambiotte 144/8 | B - 1030 Brussels, Belgium | Tel: +32 2 305 80 12 | Fax: +32 2 305 80 11
www.ms-in-europe.org | secretariat@emsp.org | VAT: BE 0473.317.141 | IBAN: BE 74310144570607 | BIC: BBRUBEBB

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