Australasian Multiple Sclerosis Network of Care Multiple Sclerosis Network of Care Australia
A Voice for People Affected by MS
About the Network - Our Vision           

"A Respected Seat at the Table"           

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About this Road Map
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  Adapting to Change
  A Right to be Tested
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Our Vision
Sharing Experiences The  Multiple Sclerosis Network of Care Australia was established in 2003 (originally known as the Horizon Group) under the guidance of the (then) Multiple Sclerosis Society of NSW - with the vision that people affected by MS have a respected, evidence based and ‘patient-centred’ seat at the table in all matters relating to ways in which services affecting their well being are developed, delivered and evaluated. Widely acknowledged MS relevant benchmarks underpin this process. The Network now operates nationally (with strong international linkages) as an independent body.
Our Objective
Fundamental to our vision is the objective of increasing access to patient-centred services and support that enhance the Quality of Life perceptions of people living with Multiple Sclerosis and their families.
Our Strategy - An Important Source of Reliable Information
The Network is an unincorporated, not-for-profit, evidence based voluntary body.  It draws its direction and expertise from the diverse knowledge and skills base voluntarily provided by network members and their colleagues. Its role is educational and supportive with no affiliations with pharmaceutical organisations or associated entities. Two of Australia's peak health advisory bodies, the National Health and Medical Research Council and HealthPACT have acknowledged the importance of the Network as a source of information for individuals living with MS and their families. The respected International Society for Neurovascular Disease (ISNVD) identifies its research reporting capability as "amazing''.
Our Key Result Areas are to
* Promote awareness about the benefits of patient-centred approaches to MS care

Provide feedback to service providers, agencies, parliamentary representatives, regulatory bodies and MS organisations, about ways to improve the well being of people with MS


Encourage the MS community, including service providers, to contribute their expertise to the implementation of improved approaches to patient-centred MS care

* Highlight the importance of ensuring that the voices of people affected by MS are properly heard and respected in all matters affecting their well being
 The Road Map to Multiple Sclerosis Support Services plays an important role in achieving these outcomes.
Your Voice is Important
Membership of the Network is open to all who are committed to the vision of enabling the voices of those living with MS (and their families) to be better heard, respected and acted upon.
Network of Care Participation in the Network's decision making processes is available to all with an interest in MS irrespective of where they reside. Participants receive periodic e-mail updates on MS related issues to which feedback and suggestions are encouraged. There is no charge and e-mail details are strictly confidential.  Send an e-mail to if you would like to participate in this process.
Registered group members (currently around 1,600) comprise individuals and organisations, include the MS community, health care professionals, service providers and agencies, support network coordinators, case managers, researchers, parliamentary representatives and members of MS organisations. Participation and awareness is enhanced as information is relayed through a myriad of associated networks.
Breaking News
Our News Headlines 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. Check out some recent discussion topics.
Outcomes - The Australian Road to Multiple Sclerosis Support Services
Referencing an estimated 15,000 abstracts across more than 1,700 titles our Road Map, which attracts around 70,000 visitors annually, reflects our collaborative patient-centered approach to knowledge sharing including prioritising issues, expectations and associated research outcomes.
The vast majority of topics are identified by members of the MS community. 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 (by way of facts sheets) of what may be needed. Not all aspects apply universally as needs vary according to disability level and personal circumstances. While some of the Road Map references may relate to specific localities they invariably typify the types of support more broadly available. Access the Road Map
The HorizonsSCAN Process - A Unique Resource
The Road Map is underpinned by the Network's HorizonsSCAN research methodology. This methodology includes identifying and bringing together, via leading edge search engine and database technology, a wealth of global evidence based, patient–centred information with particular relevance to the Australian scene.  What makes it different is that all of the parameters by which information is analysed and subsequently prioritised and displayed are patient-centred  - reflecting ongoing feedback since 2003. A unique resource for families living with MS, service providers, researchers, policy advisors and parliamentary representatives.   
Building a Patient Centred Culture
Patient Centred Care The importance of a patient-centred approach to all aspects of health care has been long recognised - however it was not until December 2010 that all Australian Health Ministers endorsed The Australian Safety and Quality Framework for Health Care developed by the Australian Commission on Safety and Quality in Health Care (the Commission).
This framework describes patient-centred care as "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". Key guidelines include:
  *  Involving patients, families, carers in policy and program development, quality improvement, patient safety initiatives and healthcare design
  *  Improving transparency whereby policy makers and regulators make data regarding patient care experience publicly available via websites
Appropriate Benchmarks are Essential
The efficacy of all such MS interventions (at a host of levels) needs to be evaluated against appropriate patient-centred benchmarks. Click here to display details of a comprehensive range of such benchmarks. Some specific examples follow.
Research Funding Guidelines

While the MS Network of Care (Australia) does not engage in fund raising (per se) it strongly endorses the following guidelines, identified by the Australian Commission on Safety and Quality in Health Care, whereby the allocation of resources recognises and gives priority to funding polices and programs that:

 *  Engage patients and families as teachers and collaborators in education programs, rather than solely as cases to be studied - example
 *  Reflect patient care experiences, as an indicator of quality, in healthcare reporting and funding models
   *  Ensure research funding bodies acknowledge the importance of patient-centred care by reflecting this in the distribution of funding
Emerging Trends - A Better Balance is Needed
It is heartening that the National Disability Insurance Scheme (NDIS) and the associated transition to Consumer Directed Care programs (CDC), especially when viewed in conjunction with related emerging issues, embody principles of patient-centred care. Less encouraging is an apparent lack of commitment by funding bodies to embrace these recommendations in the distribution of MS research funding. All too frequently MS research funding is weighted heavily in favour of research agendas and/or commercial product development imperatives rather than the aforementioned patient-centred indicators  - leaving it to the MS community itself to seek to raise much needed patient-centred research funding. Better balance is needed.
Australian Medical Research Future Fund
Established in April 2015 by the Australian Government the role of the Australian Medical Research Future Fund (MRFF) is to ensure that Australia stays at the leading edge of medical science and innovation. It funds health and medical research and medical innovation- new drugs, devices and therapies and new ways to improve health and wellbeing - with around $1 billion per year available by 2021.
Stronger Partnerships are Needed - Including with the Community
Opportunity  In June 2016 Tony Nutt, the Coalition Governments National Campaign Director said "MRFF provides the opportunity to strategically fund research and address national priorities in a more cohesive and coordinated way than previous approaches.

It will complement existing health and medical research funding to improve health outcomes by distributing new funding in more diverse ways to support stronger partnerships between researchers, health care professionals, governments and the community. In developing these priorities, the Board will consider: the burden of disease on the Australian community; how to maximise the practical benefits from medical research to as many Australians as possible, and how to ensure that funding under the MRFF complements and enhances other financial assistance provided for medical research".

Importance of Cardiovascular Risk Factors
He went on to acknowledge the importance of cardiovascular risk factors (including CCSVI conditions) to multiple sclerosis and said that Australian patients should have timely access to innovative new treatments that have been independently assessed as safe, effective and cost-effective and that Medicare benefits are available to clinically relevant services (including Angioplasty) that are generally accepted by the relevant profession as necessary for the appropriate treatment of the patient
A Case for Proactive Positive Discrimination
Notwithstanding the potential significance of the role of MRFF in relation to multiple sclerosis, there remains a strong case for advocacy for "positive patient-centred discrimination" in relation to research funding until such time that the full spirit of all of the important recommendations of the Australian Commission on Safety and Quality in Health Care are realised in relation to Multiple Sclerosis and associated disorders.


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