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

CCSVI web site

 
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
     
Contact the Network
Donations
Advanced Research
 
About this Road Map
  About the Network
  Site Map
  Topic Index
 Case Study
 
About Multiple Sclerosis
  What is MS?
  Vascular Issues
  Living with MS
  Quality of Life
  Charter of Rights
  Issues & Needs
  Networking
  Regional Support
  Service Guidelines
  Care Standards
 
CCSVI and MS
  What is CCSVI?
  Parliament's Role
  Petition
  Dispelling the Myths
  Talking Points
  CCSVI Face Book
  Innovation  & CCSVI
  Life Quality & CCSVI
  Adapting to Change
  A Right to be Tested
  The Early Adopters
  Patients Perspective
  Treatment & Contacts
 
Support Services
  Carers & Respite
  Exercise
  Home Care
  Income Support
  Rehabilitation
  Transport/Mobility
Networking
 
Australia
  Demographics
  Networking
  Network of Care
  CCSVI Australia
 
NSW
 Demographics
 Networking
 
ACT
 Demographics
 Networking
 
Victoria
 Demographics
 Networking
 
Queensland
  Demographics
 Networking
 
South Australia
 Demographics
 Networking
 
West Australia
 Demographics
 Networking
 
 Tasmania
 Demographics
 Networking
 
Early Days
  Horizon Group
 Discussion Archive
  Pathways Project
  Video Archive

  


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. It 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 that enhance the Quality of Life perceptions of people living with Multiple Sclerosis and their families.
OUR STRATEGY - AN IMPORTANT SOURCE OF 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
OUR KEY RESULT AREAS
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 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.
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
RESEARCH FUNDING GUIDELINES

While the Network 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 to the health system 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 frequentlyn 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.
A CASE FOR PROACTIVE POSITIVE DISCRIMINATION
As things currently stand there is 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 these important Commission recommendations are realised in relation to Multiple Sclerosis and associated disorders.
BECOMING INVOLVED - YOUR VOICE IS IMPORTANT
   
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 enquiry@msnetwork.org if you would like to participate in this process.
   

Registered network members comprise several hundred 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.

OUTCOMES - THE AUSTRALIAN ROAD MAP TO MULTIPLE SCLEROSIS SUPPORT SERVICES
The Road Map, which attracts around 50,000 visitors annually, reflects many of the outcomes of our collaborative approach to issue identification, research and knowledge sharing.
 
The vast majority of topics have been 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.   
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.

 

Facts Sheet RM3000MS
Road Map Reference
 | Disclaimer