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

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A B C D E F G H I J K L M N O P Q R S T U V W X-Y Z
     
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About this Road Map
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About Multiple Sclerosis
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CCSVI and MS
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Australia
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NSW
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ACT
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Case Study
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AN IMPORTANT SOURCE OF INFORMATION
Sharing Experiences The  Multiple Sclerosis Network of Care Australia was established in 2003 (originally known as the Horizon Group) under the guidance of the Multiple Sclerosis Society of NSW with the vision of ensuring that people affected by MS gain 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.
   
The Network is an unincorporated, not-for-profit, research based voluntary body.  It draws its direction and expertise from the diverse knowledge and skills base voluntarily provided by the MS community and their colleagues through around 400 reference sites, including social media, across Australia with global linkages. It has no affiliations with pharmaceutical organisations or associated entities. Its role is educational and supportive.
Around 2006 access to the Network’s emerging research databases (at that time hosted by NSW Health) and associated networking became nationally available. Two of Australia's peak health advisory bodies, the National Health and Medical Research Council and HealthPACT have since acknowledged the importance of the Network as a source of information for individuals living with MS and their families
ABOUT PATIENT CENTRED CARE
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 in health services publicly available via websites
FUNDING PRIORITIES

While the Network does not engage in fund raising (per se) it strongly endorses funding support consistent with the following guidelines identified by the Commission:

 *  Education programs should engage patients and families as teachers and collaborators, rather than solely as cases to be studied
 *  Improving patient care experience' should be included as an indicator of quality and reflected in healthcare reporting and funding models
   *  Research funding bodies should acknowledge the importance of patient-centred care to the health system, and this should be reflected in the distribution of funding
EMERGING TRENDS - A BETTER BALANCE IS NEEDED
It is heartening that the National Disability Insurance Scheme (NDIS) and the new consumer directed Home Care Packages program (CDC), especially when viewed in conjunction with related emerging issues, embody the principles of patient-centred care. Less encouraging is an apparent lack of commitment by funding bodies to embrace the spirit of these recommendations in the distribution of MS research funding. In Australia MS research funding is, as yet, very much driven by research agendas 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.
NETWORK MEMBERSHIP

Network members include the MS community, health care professionals, service providers, case managers, researchers, parliamentary representatives and members of MS organisations. Fundamental to our vision is the objective of increasing access by people with Multiple Sclerosis to services which improve Quality of Life perceptions by highlighting approaches to patient-centred care. Implicit in this process 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.

 
   

"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


 
BECOMING INVOLVED
   
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 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 registration@msnetwork.org if you would like to participate in this process.
   
KEY RESULT AREAS
Via the Road Map to Multiple Sclerosis Support Services the Network's key result areas are:
 
* Promoting awareness about the benefits of patient-centred approaches to MS care
*

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

*

Encouraging the MS community, including service providers, to contribute their experiences, expertise and ideas to the implementation of improved approaches to patient-centred MS care

* Highlighting the importance of ensuring that the voices of people affected by MS are properly heard and respected in all matters affecting their well being
 
ROAD MAP TO MULTIPLE SCLEROSIS SUPPORT SERVICES
The Road Map represents a collaborative approach to knowledge sharing.
 
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 (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
HorizonsSCAN - A WEALTH OF PATIENT CENTRED, EVIDENCE BASED, INFORMATION
The Road Map is underpinned by the Network's Australian MS specific search engine (HorizonsSCAN) that, on a daily basis, dynamically abstracts and prioritises information from a myriad of highly regarded MS reference points in Australia and across the globe. Underpinned by leading edge search engine and database technology HorizonsSCAN brings together and prioritises a wealth of evidence based, patient–centred information. What makes it different is that all of the parameters by which information is analysed and subsequently displayed are patient-centred  - reflecting ongoing feedback from Australians with MS since 2003. A great resource for Australian families living with MS, service providers, researchers, policy advisors and parliamentary representatives.   - Access the advanced research option  
BREAKING NEWS
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.

 

Facts Sheet RM3000MS
Road Map Reference
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