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

A Voice for People Affected by MS


 
 Northern Rivers Region NSW - Overview  CCSVI Australia
Building on Shared Experiences TurnOnthe Tap
 
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The Big Picture Regional Case Study News Headlines CCSVI Research Database
Last reviewed September 2016
REGIONAL BACKGROUND
The Northern Rivers is one of the fastest growing regions in Australia with population increases around double the national average. Anecdotal evidence is that a significant population movement from cooler climates is contributing to an increasing prevalence of MS in the region. The total MS population for 2015 is estimated as 360 of which 74% of all cases are women. 
These projections are based upon Access Economics 2005 study 'Acting Positively - The Strategic Implications of MS in Australia' as applied to population trends in the Northern Rivers Area provided through the Local Government and Shires Association of NSW.
COMMUNICATING WITH EACH OTHER
Communicating with each other to build on shared experiences and understandings can be important when living with MS - and also a bit of fun. It also provides a foundation for constructive feedback about how best to enhance the provision of services and support. Irrespective of where you live you are encouraged to become part of this process. Click here to access Directories of all Australian MS Peer Support Groups
 LOCALITY SEARCH

 
 Try a Locality Search to find out about what may, or may not, be happening (regarding MS) in a specific locality, i.e. Ballina
ENHANCING REGIONAL COMMUNICATION
Since 2002 there have been a number of regional initiatives aimed at enhancing the well being of families living with multiple sclerosis in the Northern Rivers region of NSW, Australia.  The majority of these have have been directed towards addressing imbalances in matching the needs, issues and expectations of pwMS with relevant and accessible levels of service delivery. Frustrations flowing from these imbalances have a negative impact for both service providers and the Quality of Life perceptions of those in need of care. Emphasis is placed on encouraging patient-centred approaches to addressing unmet needs. Fostering collaborative and enduring long term relationships between the regional MS community and Service Providers is integral to this process - find out more about these initiatives.
 THE HORIZON GROUP
April 2003 saw the establishment of a patient-centred organisation known as the Horizon Group with the vision that people affected by MS have a respected, evidence based seat at the table in all matters relating to ways in which services affecting their well being are developed, delivered and evaluated.  This initiative was facilitated by St Vincent's Hospital Lismore, the Multiple Society of New South Wales and the regional MS community.
Subsequently known as the Multiple Sclerosis Network of Care Australia (coordinated by Peter Sullivan) it went on to develop the internationally acclaimed and publicly accessible HoriZonsSCAN MS database. 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.
KEEPING IN TOUCH
To receive HoriZonsSCAN e-mail alerts regarding new and emerging developments click here (highly recommended).
STRENGTHING THE NORTHERN RIVERS MS SUPPORT NETWORK
In June 2003 at the instigation of Ballina Hospital,  MS NSW and the MS community, a complementary initiative commenced to "strengthen  the provision of positive and supportive opportunities, for all people with MS and their carers, to participate in activities that contribute to their well being".  The need for better educational communication, including information about support group activities, was identified as important.  Ownership and supported leadership from within the MS community was identified as essential. Of greatest importance is the need to respect the rights and expectations of those diagnosed with MS.
Since then,  an estimated 150 plus regional support group meetings have been convened at a wide range of localities across the region including Grafton, Ballina, Lismore, Goonellabah, Murwillumbah and Kingscliff under the guidance of a range of highly dedicated members of the regional MS community. Many of these under the banner of the  Northern Rivers Multiple Sclerosis Support Group . The current focus of these meetings is at Kingscliff.
Tell us if you would like to register additional ongoing support group venues in this Road Map.
KINGSCLIFF AND ADJOINING LOCALITIES
Deb Monahan, a person living with MS, is the volunteer facilitator for Support Group meetings on the fourth Tuesday of every month except December and January from 11am to 1pm for a semi-formal meeting at the Cudgen/Kingscliff Surf Club opposite the fig tree roundabout 63 Marine Parade Kingscliff  NSW 2487. The group has lunch during the meetings (which the club puts on) from a small but delicious menu with meals $10 each.  Check out the latest quarterly Newsletter or visit the Group's Facebook site - New members are welcomed with open arms!
GOLD COAST
The Gold Coast MS Support Group - meets at Nerang Library on the third Tuesday of each month, commencing at 11.15am. John O'Dempsey is the Convenor who can be contacted on 07 5522 4495 (mobile 0409 947 954). Check out the latest Gold Coast News. This group welcomes participation from its 'over the border' neighbors.
GUIDELINES FOR SERVICE PROVIDERS -
Experience is that service providers can play an important role in enhancing the rehabilitative benefits that support group involvement brings - by fostering awareness and collaborating with support groups to facilitate access;
* to wheelchair friendly venues
* by the less able
* to community transport
* by helping hands
* to guest speakers
Such support to be consistent with 5 key result areas.
ON THE DOWNSIDE
The key role played by regionally based MS NSW personnel in promoting the support network (to all families living with MS across the region) was unilaterally wound back following its absorption by MS Ltd (MS Australia). By late 2015 support of this type was virtually non existent - leaving it to the MS community to attempt to rebuild what was once a very popular and all embracing communication flow. In some ways, the  development of this Road Map, several associated email networks and Facebook sites are  progressively compensating for this disappointing lack of consultation and commitment.
FIND OUT MORE ABOUT PAST DISCUSSION TOPICS
The Discussion Archive area of the Road Map provides 'snapshots' of many of the issues discussed at regional meetings  over the years - Visit the Discussion Archive
OTHER NETWORKING OPTIONS
Refer to the Australasian Directory of MS Support Networks for more information about Australasian Networking

 

 

References and Acknowledgements

 

 

Multiple Sclerosis Needs, Issues and Expectations
Developed (2008) by the 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.
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, The Pathways Project recognised issues such as these  as impacting on the Quality of Life perceptions of pwMS.
MS Referral Pathways, and Benchmarks
A common theme in research relating to MS rehabilitation is based upon establishing 'referral pathways'  most appropriate to meeting the often complex and cumulative needs of people with MS.  This area of the Road Map is based upon Standards developed (2002) by the MS Society of the UK, together with clinicians and the MS community to serve as a guide for the development and provision of services to meet the varying needs of people with MS across the continuum of the disease. In 2004, the (then) MS Society of NSW, Australia recommended that the Standards be used as benchmarks by the emerging MS Network of Care. The Standards were a precursor to extensive work by the UK National Collaborative Centre for Chronic Conditions at the Royal College of Physicians in the development of National clinical guidelines for diagnosis and management in Multiple Sclerosis. 


   

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