Multiple Sclerosis Network of Care

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Major Topic Index

Facts Sheet RM851MS

Help Desk

In April 2003 a small group of people with MS, known as the Horizon Group, identified the lack of accessible, regionally relevant, MS information as a significant MS rehabilitation issue. At that time many information sources were narrowly based, lacked an appropriate MS focus, rapidly dated and were often not readily accessible. An approach to addressing these shortfalls was conceptualised by the Group. What was needed was an easily updated regionally focused Road Map, with a specific MS focus, that could be readily accessed by both the MS Community and Service Providers. In December 2003 the web based Road Map to Multiple Sclerosis Support Services on the Northern Rivers was launched.

The Horizon Group subsequently evolved into the MS Network of Care (the MS Network) with a vision of Encouraging the development of a More cohesive MS Network of Care in the Northern Rivers Region of NSW. Ongoing feedback and suggestions from the MS Community, Service Providers/Agencies, the MS Society and research projects guide the direction of the Network.

ABOUT THE NETWORK

Our objective is to provide positive and supportive opportunities, for people with MS and their carers, to participate in activities that contribute to their well being. The Network is an unincorporated voluntary body that regionally reaches out, via newsletters, support group meetings, an e-mail network and a web site to families where a family member has MS. It also maintains an e-mail communication network to carers, family members, service providers, related agencies and MS Australia. The Network is managed on a voluntary basis by people with MS, carers and friends. Service providers and agencies play an increasingly important role in contributing towards the achievement of our Vision.

*Key Result Areas*	*Outcomes - Some examples*
Fostering forums for the exchange of ideas and experiences	Find out more about these forums.
Promoting awareness and information about MS related support services including regional contacts	Browse the Road Map major topic index.
Providing feedback to service providers about ways that regional service delivery could be improved to meet the needs of people with MS	Browse the Pathways Project overview
Encouraging and supporting people with MS and their carers to contribute their knowledge and experience to the achievement of our Vision	Find out how to contribute to this process

PARTICIPATING IN THE E-MAIL NETWORK OF CARE

Access to the e-mail network is open to anyone with an interest in MS irrespective of where you live. There is no charge and your e-mail details are strictly confidential. You will receive periodic updates on MS issues to which feedback and suggestions are most welcome. While our focus is very much about regional issues in the far north coast of NSW, Australia we operate from a strong research perspective embracing significant developments world wide. As such many of the issues we explore often are very relevant to the broader MS Community. Our research interest is primarily about to quality of life when living with MS - our latest Newsletter illustrates some of the issues we address.- send us an e-mail if you would like to join the Network.

KEEPING IN TOUCH

We do this in a variety of ways including:

Making regular use of media outlets to promote our activities.

A quarterly newsletter/fax sheet is posted by the NSW MS Society to people registered with the Society who reside in areas from the Clarence to the Tweed, including, Mullumbimby, Kingscliffe, Pottsville, Ocean Shores, Byron Bay, Lennox Head, Ballina, Alstonville, Lismore, Kyogle, Casino, Coraki, Evans Head, MacLean, Grafton, Clarence Basin and adjoining localities. Read the latest newsletter.

Maintaining this Road Map and providing internet access to (an abridged version) it via a web site hosted by the North Coast Area Health Service -

Exchanging information via our e-mail based 'Network of Care'. Through this network information (including our newsletter/fact sheet) is distributed to people who have expressed an interest in keeping up to date on 'what's happening on the ground'.

Fostering educational forums dealing with topics identified by the regional MS Community. Topics need not necessarily be MS specific but should be relevant to the way in which they contribute to improving life Quality of Life when living with MS.

YOUR IDEAS.

We are always on the look out for ideas about discussion topics and guest speakers. If there is a topic that you think is of interest to the MS community or you know of an interesting guest speaker please tell us. Topics need not be MS specific but, ideally, should contribute to improving Quality of Life when living with MS. Where possible, services so identified become the subject of presentations at regional meetings and educational forums. The Road Map includes a summary of topics covered at past meetings.

GETTING TOGETHER

Meetings are conducted at several localities. Guest speakers regularly address area meetings. Irrespective of where you live you are always welcome to join in at any meeting. Contact your area coordinator or drop along and make yourself known. Friends, family and carers are most welcome as are volunteers who may be able to lend a �helping hand�. Assistance with transport is always appreciated and makes a real difference. While there is no charge a contribution to help cover the cost of a 'cuppa' may apply. Participation in these groups can be both informative and a bit of fun. Of equal significance, the 'collective wisdom' that flows from sharing information is the very essence of developing a more cohesive network of care in the region.

We are always on the look out for members of the MS community who are able to go 'the extra mile' in establishing MS discussion groups in their locality or in otherwise contributing their enthusiasm, knowledge or skills towards the achievement of our Vision. One of the aims of the Network is to provide feedback to service providers who are also welcome to drop by at meetings and to join in discussions - it is a great way to appreciate different perspectives. Some service providers do this fairly regularly. It is popular and effective. Find out more about area meetings

ROLE OF SERVICE PROVIDERS

Much has been written about complexities in delivering services to MS communities. On an ongoing basis the Network receives feedback, from pwMS, about what they perceive makes the real difference in the way that services are delivered to clients by service providers. The discussion paper 'Towards a More Cohesive MS Network of Care in the Northern Rivers Region of NSW' provides an evidence based framework about the most pressing needs of pwMS in the region and options for addressing those needs. While a wide range of service delivery issues are reflected in the paper they invariably fall into one or more of the following four aspects of service delivery.

*Service providers should endeavour to deliver services in ways that:*	*Getting Started*
Are consistent with recognised MS Referral Pathways and Service Provision Benchmarks	Find out more about these Benchmarks.
Address the individual Needs, Issues and Expectations of pwMS	Find out more about these Needs, Issues and Expectations.
Enhance client perceptions of their Quality of Life	Find out more about MS and Quality of Life.
Recognise that the management of MS can be complex often involving a multitude of interdependent issues	Find out more about some of these issues.

RESOURCES FOR SERVICE PROVIDERS

Over time, a range of resources has evolved to assist in finding out more about MS related issues and ways they might be addressed.

*A range of resources is available to assist including:*	*Getting Started*
The information included in this Road Map	Browse the major topic index
A Multiple Sclerosis Help Desk that includes a 1800 telephone assist service	Visit the Help Desk
An e-mail based Network of Care that provides regular updates on regional MS issues	Find out about how to join this Network
Participation in regional MS Support Group meetings	Find out more about how this works
Specialised training by the MS Society may be available	Find out more about this training

ENHANCING REGIONAL MS CARE

Since 2002, a number of important regional MS referral pathways have been discontinued without the provision of reasonably accessible alternatives. This is happening at a time when the MS population in the region is increasing significantly. There is a pressing need for the targeted provision of MS related awareness, professional development and related education to key service providers. Of particular importance is the need for the outcomes of rehabilitation programs and services to be evaluated against objectives and benchmarks consistent with the Needs, Issues and Expectations of people with MS. While not all of those with MS may have an immediate need for additional support it helps to know that it is reasonably accessible if needed. Read more

REGIONAL HELP DESK

For details of some Network contacts visit the regional Help Desk

Next - Enhancing regional MS Care on the Northern Rivers

References and Acknowledgements

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, MS Australia recommended that the Standards be used as benchmarks for the development of a more cohesive MS network of care in the Northern Rivers region of NSW. 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.

Multiple Sclerosis Needs, Issues and Expectations
This area of the Road Map highlights the relationship between studies relating to MS prevalence cross referenced to the aforementioned Standards 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.

Needs, Challenges, Rewards of Multiple Sclerosis Support Group Leaders
In September 2005 the Medical Psychology Research Unit, School of Psychology at the University of Sydney advised that a research project was being conducted, in collaboration with the NSW MS Society, in relation to the Needs, Challenges, Rewards of Multiple Sclerosis Support Group Leaders. This unpublished discussion document is a regional response for the Northern Rivers area of NSW. The outcomes of the research project are not known.

About the Northern Rivers Multiple Sclerosis Road Map	Facts Sheet RM851MS
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