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The Multiple Sclerosis Network of Care is an unincorporated voluntary network comprising a diverse range of individuals sharing the common vision of fostering patient-centred approaches to multiple sclerosis care. It operates across Australia with international linkages. Members include the MS community, health care professionals, service providers, case managers, parliamentary representatives and members of MS organisations. Fundamental to this vision are the objectives of increasing access by people with Multiple Sclerosis to services which improve Quality of Life perceptions, road testing evaluation methodologies and providing models for similar approaches elsewhere. Implicit in these outcomes is that the 'voice of people' affected by MS be reflected in the ways in which services affecting their well being are developed, delivered and evaluated.
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"Patient-centred care is
an approach to the planning,
delivery, and evaluation of health
care that is grounded in mutually
beneficial partnerships among
healthcare providers, patients, and
families - it is the right thing to
do"
Australian Commission on Safety and Health Care
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RESPONDING TO A NEED |
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The Network evolved from a range of initiative by the highly respected St Vincent's Hospital at Lismore, NSW during the period 2003 to 2006. For many years St Vincent's was the hub for the provision of all public rehabilitation services in the region and adjoining localities. While it is no longer involved in the provision of public rehabilitation services much can be learnt from developments during this period - find out more |
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KEY RESULT AREAS |
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Promoting
awareness
and
information
about
patient-centred
approaches
to MS
care |
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Providing
feedback to service providers, agencies, parliamentary representatives and MS
organisations, about
ways to improve the
well being of people
with MS
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Encouraging the MS community, including service providers, to
contribute their experiences, expertise and ideas to the achievement of the Vision
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Highlighting and encouraging ongoing
forums
for the exchange of
ideas and
experiences
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INFORMATION SHARING AND PARTICIPATION |
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During 2008 participation in the Network, became available to all with an interest in MS irrespective of where they live. Participants receive periodic e-mail updates on MS related issues to which feedback and suggestions are encouraged. There are several hundred people and organisations, in all Australian States, New Zealand and elsewhere across the globe, who participate in this process.
There is no charge and e-mail details are strictly confidential. Send an e-mail to register@msnetwork.org if you would like to participate in this process.
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ROLE OF THE NETWORK AS A SOURCE OF INFORMATION |
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The Road Map to Multiple Sclerosis Support Services is one of the progressive outcomes of this collaborative approach to knowledge sharing.
Over the past decade there have been some excellent studies about the Needs, Issues and Expectations of pwMS.
Unfortunately, details about many of these studies, several of which are Australasian based, are often not readily available and/or not translated into improved approaches to service delivery. A special effort is made to identify and cross reference information of this type, hopefully in a friendly and uncluttered manner -
example.
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The vast majority of topics have been identified by members of the MS community in Australia. Not all topics are necessarily MS specific but most have relevance to approaches to enhancing Quality of Life perceptions when living with MS. In circumstances where services are not generally available, or fall below the expectations, it aims to provide an overview of what is needed. Not all aspects apply universally as needs vary according to disability level and personal circumstances. |
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ROAD TESTING AN AUSTRALIAN MS SPECIFIC SEARCH ENGINE |
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In May 2013 the Network began road testing a new search engine with the aim of consolidating and highlighting the wealth of well researched information from a growing number of non-commercial Australian MS ‘sister’ websites developed and maintained by people with multiple sclerosis. As ever the aim is to promote the ‘voice of people affected by MS. This 'patient-centred' consolidation and defragmentation of knowledge’ showcases the efforts by pwMS in recent years in highlighting issues of concern. Well done everyone. An example of a search relating to CCSVI is at
http://www.msnetwork.org/library/ccsvi.htm
The
‘open
ended’
advanced
research
option is at
http://www.msnetwork.org/library/index.htm.
Have a play around. Suggestions and feedback
are always welcome
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IMPORTANCE OF THE NETWORK AS AN INFORMATION RESOURCE |
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Two of Australia's peak health advisory bodies, the National Health and Medical Research Council and HealthPACT have acknowledged the importance of the MS Network of Care as a source of information for individuals living with MS and their families. While some of the Road Map references may relate to specific regions they invariably typify the types of support more broadly available. Holistically integrating information from the Road Map to address individual needs is the challenge. . By 2011 the Road Map was attracting around 20,000 visitors annually - access the Road Map..
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BREAKING NEWS |
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Our News in Brief reflects the 'collective voice' of an energetic cross section of the Australian MS Community. Research, issue identification and feedback are the hallmarks of this community. Emphasis is placed on issues that have the potential to enhance individual quality of life perceptions in an Australasian environment. Check out our latest News in Brief. |
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EVALUATING SERVICE DELIVERY |
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Underpinning all of the foregoing is an ongoing process, being 'road tested' in the Northern Rivers region of NSW, to highlight shortfalls in the extent to which pwMS can access regionally relevant referral pathways appropriate to their needs. The outcomes of this process may have relevance elsewhere in Australia |
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The
Pathways approach to
evaluation involves
mapping the
availability/accessibility
of support for people
with multiple sclerosis
against widely
acknowledged MS referral
pathways.
The process does not
evaluate clinical
practice but is relevant
in highlighting
shortfalls in gaining
timely and appropriate
access to such practice.
The
inclusion of
'empowerment' benchmarks
in the mapping process
further highlights
patient-centred
practices. |
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By
providing understandings of
underlying issues, service providers and
related agencies (individually or in
partnership), are in
better positions to
address issues of most
concern to MS
communities.
The overall aim is to
increase access by
people with Multiple
Sclerosis to
services which improve
Quality of Life
perceptions, "road test"
evaluation methodologies
and provide a possible
model for similar
approaches elsewhere -
more about the
Pathways methodology. |
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ADVOCACY |
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The Networks aims, via the progressive outcomes of the evaluation processes, to assist in clarifying/identifying gaps in the delivery of MS support and to be a catalyst in encouraging service providers to work together to address such gaps. In circumstances where services are not reasonably accessible, or fall below expectations, it frequently provides an overview of what may be needed. |
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Experience is, that the identification of such shortfalls, frequently results in service providers (including relevant agencies and health care providers), working together individually or in collaboration, can lead to mutually satisfactory resolutions. This is very encouraging. Where this is not possible a network member, at arms length from an issue, may be able to assist. Beyond that, network members, individually or in collaboration may refer an issue for more formal advocacy - an example
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‘Qualitative evidence’
may lack the scientific rigour of,
for instance,
randomised controlled
trials, but there is
growing acceptance that
it brings a body
of knowledge that not
only complements other forms of evidence,
it enables
a greater understanding
of the decision-making
processes involved in
the
provision of care'
UK
Charter for MS Services |
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