Australasian Multiple Sclerosis Network of Care Multiple Sclerosis Network of Care Australia

A Voice for People Affected by MS

Rehabilitation and Healthy Living        

''Maintaining Functional Abilities''         

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What is Multiple Sclerosis?      News in Brief Exercise CCSVI Research Database


Rehabilitation aims to improve and maintain the functional abilities of people with multiple sclerosis in the face of disease progression

Journal of Indian Academy of Neurology - October 2009
An increasing number of journal articles are describing the value of the many rehabilitation interventions that can be used throughout the course of the disease, from the initial symptoms to the advanced stages. An integrated team of healthcare professionals is necessary to address a myriad of problems to reduce impairments, disabilities, and handicaps'': Newly diagnosed
Guidance in Improving Function is a Priority - Beyond a Research Environment
The following observations (2006) by Professor of Rehabilitation medicine, George H. Kraft, MD, MS, provide an insightful patient-centred perspective into ''the real world'' of MS rehabilitation. At that time  Professor Kraft was the principal investigator at the Multiple Sclerosis Rehabilitation Research and Training Center at the University of Washington
''When I contemplate my multiple sclerosis (MS) practice, I am impressed that people with MS never ask for help in preventing their T cells from attacking the myelin of their central nervous system. Rather, they ask for help in improving their ability to function. Often, they ask for help in moving about. Frequently they ask if anything can be done to help them remember things better or feel less tired or depressed. When asked, they often want help with bladder function, even though they may not volunteer it initially. Thus, people with MS desire rehabilitative care. Of course, they also want medicines to reduce exacerbations and prevent their disease from progressing. But it is improvement in function that is the major plea''.
He went on to say that "rehabilitation has been slow in coming to MS care. Although now a focus of organisations such as Rehabilitation In Multiple Sclerosis (RIMS) in Europe and the Consortium of Multiple Sclerosis Centers (CMSC) in the United States, this international effort is little over 15 years old. One of the major reasons for the delay in the application of rehabilitative care to MS was a (mistaken} belief that rehabilitation for people with MS was essentially a waste of time and money; people with MS would progress in their disability, and all the effort would be for naught. Effort should be spent on more “static disabilities such as spinal cord injury and amputations".
Medications may not Delay long term MS Progression
In relation to the role of medications, in July 2012 the Canadian press reported on a study involving 2,656 patients with MS (published in the Journal of the American Medical Association) that suggests that exposure to a group of drugs known as the beta interferons aren't preventing the progression of disability. Dr. Helen Tremlett, one of the study's authors, says the finding is just coming to light because in the past, not enough time had elapsed from when the drugs were approved to treat the disease. However, the researchers warn that the study's results weren't meant to suggest that MS patients stop taking the drugs as the medications are still effective at reducing relapse rates - more about MS medications
What are the main areas of Functional Impairment?
Issues A study titled ‘Living With Multiple Sclerosis in New South Wales at the Beginning of the 21st Century’ summarised 20 frequent issues that impact on Care Needs. The issues were identified by 2618 people registered with the NSW MS Society in 2001.
 The survey encompassed an estimated 70% of all people living with MS at that time in NSW. The study ranks issues according to frequency of reporting. While it is often stated that MS 'affects everyone differently' the study outcomes indicate commonality in many of the issues impacting on daily living. The study outcomes are consistent with international experience and with an Australia wide Needs Analysis undertaken by Deakin University in collaboration with MS Research Australia in 2012 - more about these studies.
Enhancing Vascular Health
Perhaps the most significant development towards enhancing functional improvements relates to the emphasis being placed upon vascular health. In January 2010, the most highly read peer reviewed neurology journal, Neurology, reported on the outcomes of a study involving 8,983 pwMS, that concluded that vascular comorbidity, whether present at MS symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in MS and that the impact of treating vascular comorbidities on disease progression deserves investigation, The study demonstrated that the median time between diagnosis and need for ambulatory assistance was 18.8 years in patients without vascular problems and 12.8 years for those with vascular comorbidities - read more
The role of regular exercise in enhancing blood flow appears significant in delaying MS progression - as well as partially ''winding back'' some damage already occasioned. Given that vascular irregularities contribute to disease progression, it makes good sense to choose lifestyle choices that enhance vascular health - rather than place additional pressure on what, for many, may already be a compromised vascular system.  
Appropriate exercise, proper nutrition, and effective sleep readily spring to mind. In some situations it may also be necessary to address underlying chronic inflammatory issues. For example there is evidence for the respiratory pathogen Chlamydophila (Chlamydia) pneumoniae (cpn) being a causal factor in some variants of multiple sclerosis. Above all is the importance of addressing the chronic underlying conditions giving rise to irregular blood flow - more about what is involved in doing this.
Impact on Quality of Life Perceptions
Quality of Life is defined by the World Health Organisation as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. Arguably the rapidly emerging knowledge that many of the most disabling symptoms of MS are, for many, being shown to positively respond to better management of vascular irregularities (across all levels of MS) dramatically influences the context of the ''culture and value systems'' in which multiple sclerosis has been portrayed for generations. This provides an entirely new frameworks for measuring QoL perceptions and associated coping strategies - read more about Quality of Life.
Economic Considerations
Over and above the dramatic improvements at an individual level, the broader national economic benefits in effectively treating vascular abnormalities in pwMs are conservatively estimated at $1 billion per annum. Currently there are only two obstacles inhibiting the transfer of these benefits to the broader Australian MS population. First is the need for a better informed MS community, including all of those individuals and organisations whose decisions may impact on the ways in which support becomes available to pwMS, Second is a need to address access issues especially outside of Sydney and Melbourne metropolitan areas.
Access to Rehabilitation in Australia
Access A wide ranging study by Access Economics (2005), titled Acting Positively - The Strategic Implications of MS in Australia, observes that "people with MS are over-represented in rural and regional areas, where access to services (particularly respite) and workforce adequacy (notably medical) is poorest".
Some years later the Access Economics findings were echoed in a Needs Analysis of Australians with MS prepared by Deakin University in collaboration with MS Research Australia in November 2012 .
Service Provision Satisfaction Levels
The Needs Analysis,  demonstrated that the level of satisfaction with the availability and quality of services surveyed reduced as the participant lived further from metropolitan regions, such that participants in the remote areas were least satisfied with the services, followed by rural, regional and metropolitan. The following table illustrates the the impact of this 'geographic isolation factor' as related to overall numbers of people with MS according to State. Researchers recommended that strategies be developed to address 'isolation issues' with the aim of improving services availability
An extrapolation of data from the publications "Needs Analysis of Australians with MS - 2012'' and
 the "Economic Impact of Multiple Sclerosis in Australia - 2010

Click on the State/Territory name to find out about regionally available support for pwMS
Demographics of MS Populations NSW VIC QLD WA SA TAS ACT
Non Metropolitan - comprising regional, rural and remote 3,196 2,389 1,684 648 579 452 36
Percentage of State MS Population 51% 36% 53% 28% 32% 63% 10%
Estimated State MS Population 6,268 6,637 3,179 2,313 1,809 718 360
The Multiplier Effect
Over and above the issues highlighted by Access Economics, 'isolation factors' are exacerbated by disability level, extreme distances, poor or no public transport, minimal/inappropriate support, access to information and financial considerations. In terms of numbers and geographic size the 'multiplier effect' appears to be most evident in NSW and, to a lesser extent, Queensland.  
A Need for a Shared Vision
Vision In November 2011 Australia's peak health advisory body, the National Health and Medical Research Council (NHMRC) re-affirmed earlier advice that "Australia has no NHMRC endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis nor is it aware of any plans for their development"
It went on to say "starting points' to initiate the development of such guidelines could include the State Chief Health Officers, the CEO of NHMRC or Australia's Chief Medical Officer and that funding is always an issue, so if there is a funding source, that makes it easier" -  more about this issue.
 Effective Rural Access is Logistically Impossible
The issue of rural access was revisited in December 2012 by Dr Michael Barnett when establishing an MS related Telemedicine facility in Dubbo, NSW. He said  ‘It is logistically impossible for many patients with MS to travel to our clinic on a regular basis, potentially compromising their medical care. We felt it was important to establish some way of providing timely and accessible care to patients with MS in rural areas". The facility was established by Dr Barnett and colleagues at the Brain and Mind Research Institute (BMRI) in association with the Royal Prince Alfred Hospital and Multiple Sclerosis Australia - NSW/ACT/VIC, with support from the School of Rural Health, University of Sydney - find out more.
Brain Plasticity
Professor Kraft further observed "As we learn more about the inner workings of the thinking processes of people with MS using qualitative interview techniques, and more about compensatory brain function through functional magnetic resonance imaging studies, we are becoming aware of the intense effort put forth by people with MS to function as well as they do and the role of brain plasticity in allowing this to occur. Previously discrete regions of brain activity become spatially arranged more diffusely – a necessity, as MS lesions destroy old neuronal pathways. This may account for the difficulty in multi-tasking often seen early in the disease process.

Consequently, we are now suspicious that isolated system testing – whether in the motor or cognitive sphere – may not give a completely accurate assessment of function in the real world in which some degree of multitasking is a prerequisite for success. I believe that we are scratching the surface in our understanding of this at present - rehabilitation is what people with MS want" - read more about Professor Kraft's
Pain Management
Expert consensus and a growing body of research says that best practice pain management often requires coordinated interdisciplinary assessment and management involving, at a minimum, physical, psychological, and environmental risk factors in each patient. This is the model of care offered in specialist multidisciplinary pain clinics. The worlds first National Pain Management Summit (held in Australia in March 2010) reported that these clinics have unacceptably long waiting lists, and are often poorly integrated with primary health care and community-based services. The summit made a number of recommendations including calling for recognition of chronic pain as a condition in its own right with access to treatment in the chronic disease model of care - Click here to display further references about pain
Complementary and Alternative Therapies
The World Health Organisation (WHO) defines CAMs as “a broad set of health care practices that are not part of that country’s own tradition and are not integrated into the dominant health care system.” They include diets, exercise regimes, other drugs such as cannabis, and some psychological therapies.
Click here to find out more about Complementary and Alternative Therapies

References and Acknowledgements


A Charter for MS Services : the voice of people affected by MS

The Charter for MS Services: the voice of people affected by MS, incorporating the Guiding Principles for the Provision of Services to people with MS was developed (2003) by the Multiple Sclerosis Society of Great Britain and Northern Island and  reflected in a number of subsequent studies. The Guiding Principles have broad application in all areas of service delivery to people affected by MS.  Issues include recognising personal dignity, maximising personal potential,  involvement of service users and carers in the planning and provision of services, fostering a sense of involvement, inclusion of those who might find it particularly difficult to participate, holistic approach to service provision,  support for providers wishing to improve their services, clear local standards for measuring success, Read the full text of the Guiding Principles or an abridged summary.
Lifetime Continuous Care

MS Australia, in a 2008 submission to the Australian Government, highlighted the need for improved coordination in the delivery of dedicated lifetime continuous care programs and services (including respite) for people with MS. It went on to say that Australians living with MS and their families need viable alternative care models to those currently available. Many support programs are designed for static disability groups or ageing, and do not cope with increasing and changing needs. The submission observed ‘people with MS pose a significant challenge due to the changing nature of their condition which does not respect waiting lists’ A priority in dealing with the unmet demand is overhauling the interfaces of the various care and support programs with and across government jurisdictions. 
Measuring Quality of Life in people with Multiple Sclerosis

Overview of a presentation(2006) by Dr Gary Fulcher the NSW MS Society's Principle Clinical Psychologist  and Research Director - includes a study by De Toffol, E (2005): Doctorate of Clinical Psychology/Master of Science dissertation - University of Sydney. Quality of life and health status are quite distinct concepts.
A purely “health-status” approach to MS rehabilitation underestimates the challenges faced by people with MS. Studies relating to the quality of life perceptions of people with MS, show that psychosocial aspects are represented much more frequently than physical aspects
Multiple Sclerosis Needs, Issues and Expectations

Developed (2008) by the NSW Northern Rivers MS Network of Care, this area of the Road Map highlights the relationship between studies relating to MS prevalence cross referenced to  benchmarks for addressing care needs according to disability level. Includes details of the Charter of Individual Rights and Expectations and identifies the top 20 ' common issues' ranked by  frequency of reporting as identified by 2618 people with MS in NSW.  A useful checklist for service providers and the MS Community
MS Care Standards and Referral Pathways

A common theme in research relating to MS rehabilitation relates to establishing 'referral pathways'  most appropriate to meeting the often complex and cumulative needs of people with MS.  This area of the Road Map provides an overview of  MS service delivery guidelines cross referenced to regional  examples.  These guidelines were adopted by the Pathways Project as benchmarks for identifying and prioritising shortfalls in regional service delivery. The inclusion of regional 'effectiveness' indicators for each benchmark identified services most in need of review.
Acting Positively - The Strategic Implications of MS in Australia

A wide ranging study by Access Economics (2005) that includes extensive demographic data relating  to the prevalence of MS nationally. The study observes  ‘Smarter use of new information technologies can assist in delivering health and support services to people in rural and remote areas, including web-based  information resources and messaging, moderated chats and forums, videoconferencing and clinical communications’. The study also
observes  that "people with MS are over-represented in rural and regional areas, where access to services (particularly respite) and workforce adequacy (notably medical) is poorest " 
Living with Multiple Sclerosis in New South Wales at the beginning of the 21st Century

The NSW MS Society surveyed  2618 people registered with the Society in 2001 (estimated at 70% of the NSW MS population). The findings of this study clarify the broad impact of MS, and in particular the impact of mobility disability, on the lives of people living with MS in NSW, Australia, at the beginning of the 21st century. The study’s wide ranging findings enables the Society to better target its policies on service provision and to identify areas where advocacy activity may be required.  By way of example, by highlighting a range of 'common' issues relevant to the needs of MS communities it provides a focus for identifying related support services - example. The results of this study became more widely accessible when published in the International Journal of MS Care in 2006. 
Rehabilitation Recommendations for Persons with Multiple Sclerosis

In June 2007, the Medical Advisory Board, National Multiple Sclerosis Society USA published 'Rehabilitation Recommendations for Persons with Multiple Sclerosis' by way of guidelines for physicians, nurses, therapists, insurers, and policy makers regarding the appropriate use of rehabilitative therapies in MS. These guidelines define rehabilitation in MS as a process that helps a person achieve and maintain maximal physical, psychological, social, and vocational potential, as well as quality of life consistent with physiological impairment, environment, and life goals. Achievement and maintenance of optimal function are essential in a progressive disease such as MS.

The guidelines observe that rehabilitation is considered a necessary component of comprehensive, quality health care for people with MS, at all stages of the disease, occurring in many scenarios and practitioners should consider referral of individuals with MS for assessment by rehabilitation professionals - including rehabilitation physician and occupational, physical, and speech and language therapists practitioners - when there is an abrupt or gradual worsening of function or increase in impairment that has a specific impact on the individual's mobility, safety, independence, and/or quality of life.
National clinical guidelines for diagnosis and management in Multiple Sclerosis

Developed (2014). The guideline cover the full range of care that should be available  to adults of all ages with MS. These guidelines evolved from earlier far sighted research (2002) by the Multiple Sclerosis Society of Great Britain and Northern Ireland,  the MS Professional Network and the MS Community.

The guidelines include the observation that inpatient and outpatient rehabilitation facilities are critical and should be widely available. Recommendations include that self referral to rehabilitation services should be available to every person with MS when they need them, usually when they develop any new symptom, sign, limitation on activities or other problem, or when their circumstances change.

The comment is also made that health service professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a ‘hidden’ problem contributing to their clinical situation, such as fatigue, depression, cognitive impairment and related issues. The importance of developing a seamless service from a client perspective is emphasised.


  Facts Sheet RM1871MS
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