Multiple Sclerosis Network of Care Australia

The Multiple Sclerosis Network of Care is an unincorporated voluntary body that originated in 2003 as an initiative of the then Multiple Sclerosis Society of NSW. It now operates independently across Australia with the primary aim of providing a voice for families affected by Multiple Sclerosis. Australia's peak health advisory bodies - the National Health and Medical Research Council (NHMRC) and the Health Policy Advisory Committee on Technology (HealthPACT) - have acknowledged the importance of the Network as a source of information for individuals living with MS and their families.

It is has evolved primarily as an e-mail based network whose participants include several hundred people and organisations who provide and receive feedback about issues impacting on people living with MS. Network participants include pwMS, carers, family members, case managers, health care professionals, parliamentary representatives, researchers and MS organisations. With the emergence of new knowledge about vascular associations and MS progression it has also developed strong linkages with CCSVI Australia.

KNOWLEDGE SHARING, MUTUAL RESPECT AND PARTICIPATION

A need to develop new ways to enhance 'The Voice of People Affected by MS' was identified through a series of meetings convened by St Vincents Hospital, at Lismore, NSW, Australia in 2003.

At that time St Vincents Hospital was the major provider of public rehabilitation services in the region. The concept of developing, on a voluntary basis, a broad based Multiple Sclerosis Network of Care emerged as a result of these meetings. The aim was to develop a regionally based pilot Network in such a way that it could be progressively extended to other localities - read more about the Network origin.

In doing this it was decided to identify/establish evidence based frameworks, based upon high quality MS care practices across the globe, to serve as benchmarks/guidelines for enhancing service development and delivery to people with Multiple Sclerosis (pwMS).

On the advice of Robyn Faine, client services manager of the (then) Multiple Sclerosis Society of NSW, it was agreed to underpin these frameworks with the recommendations included in the publications 'A Charter for MS Services : the voice of people affected by MS', and 'Developing MS Healthcare Standards: evidence-based recommendations for service providers'. This information was subsequently incorporated in what became known as the 'Road Map to Multiple Sclerosis Support Services'

In 2008, and in response to many requests, access to the Road Map, and associated networking, was extended to all with an interest in MS. While some areas of the Road Map may be regionally specific, the issues, research references and associated examples are relevant across a broad spectrum of MS care - examples

AN EVIDENCE BASED APPROACH

Over the past decade there have been some excellent studies about the Needs, Issues and Expectations of pwMS.

Unfortunately, details about many of these studies, several of which are Australasian based, are often not readily available and/or not translated into improved approaches to service delivery. A special effort is made to identify and cross reference information of this type, hopefully in a friendly and uncluttered manner - example.

QUALITY OF LIFE AND ACCESS TO INFORMATION

One of our primary aims is to explore issues that impact, either positively or negatively, on the Quality of Life (QoL) perceptions of people with multiple sclerosis (pwMS).

	We have a strong interest in highlighting innovations that enable the 'voice of people affected by MS' to be heard and respected. Knowledge sharing, mutual respect, inclusion and participation are our key ingredients for developing collaborative relationships with and between pwMS and health care professionals. We aim to highlight Australasian experiences that reflect these aspirations - example.

Research identifies aspects of thinking, learning, memory and acquiring new information as impacting on Quality of Life perceptions. Access to timely and relevant information is the cornerstone of this process. The Charter of Individual Rights and Expectations echoes this need in the following terms "people affected by MS must be in a position to participate fully and make decisions about their support and care, with information and advice to help them make such decisions. The scope of the information needs to enhance QoL perceptions is significant - read more

ENHANCING KNOWLEDGE SHARING

An e-mail based Network of Care complements the Road Map by enabling us to draw upon a diverse knowledge base.

There are currently several hundred people and organisations, in all Australian States, New Zealand and elsewhere across the globe, who provide and receive feedback about issues impacting on people living with MS. Participants include pwMS, carers, family members, case managers, service providers, agencies, parliamentary representatives, researchers and MS organisations. Participation 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 also receive periodic updates on MS issues to which feedback and suggestions are most welcome. Send an e-mail to register@msnetwork.org if you would like to participate in this process.

GETTING TOGETHER

Opportunities also exist to participate in 'face to face' get togethers across a range of localities - click here to find out more about these opportunities

During 2009 the international MS community also commenced building a global, internet based, network primarily comprising a combination of web sites, YouTube, Facebook groups and e-mail networks. Collectively these initiatives provide a new and important 'Voice for People Affected by MS'. click here for a highly recommended Australian example

ADVOCACY

The Road Map objectives include assisting in clarifying/identifying gaps in the delivery of MS support and to be a catalyst in encouraging service providers to work together to address such gaps. In circumstances where services are not reasonably accessible, or fall below expectations, it frequently provides an overview of what may be needed.

Our experience is, that the identification of such shortfalls, frequently results in service providers (including relevant agencies and health care providers), working together individually or in collaboration, can lead to mutually satisfactory resolutions. This is very encouraging. Where this is not possible a network member 'at arms length' from an issue may be able to assist. Beyond that, network members, individually or in collaboration may refer an issue for more formal advocacy - an example

NEWS IN BRIEF

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.

Participants in our e-mail based 'Network of Care' receive periodic alerts about breaking news and related developments - Send an e-mail to register@msnetwork.org if you would like to participate in this process..

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, Read the full text of the Guiding Principles or an abridged summary

Multiple Sclerosis Needs, Issues and Expectations
Developed (2008) by the NSW Northern Rivers MS 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

Road Map to Multiple Sclerosis Support Services
Originating in April 2003, the Road Map aims to create awareness of the types of support services that may be relevant to MS communities, assist readers to obtain further information appropriate to their needs {through cross referencing to national and international experience), assist in identifying gaps in MS support practices/services and be a catalyst for encouraging service providers to work together to address these gaps. While some of the material in the Road Map may be regionally specific the research references are relevant across a broad spectrum of MS care.

Service Provision Guidelines
A good starting point in matching service delivery expectations with outcomes is for services to be delivered in ways that are consistent with the Guiding Principles for the Provision of Services to people with MS. Shortly stated these principles highlight a need for good quality service provision to encompass a full appreciation of each individual’s nursing, personal, social and spiritual care needs and expectations. The aim should be to maintain independence as far as possible and ensure that the best quality of life is achieved. Service delivery should take advantage of the expertise and specialist knowledge of professionals from a range of disciplines. A multi-disciplinary approach has consistently proven to be the most effective model of working. This area of the Road Map brings together a number of research based aspects of MS service delivery consistent with these expectations.

Innovation and Quality of Life
In a discussion paper delivered in conjunction with the 14th Annual Scientific Meeting of the Australasian College of Phlebology in Melbourne, Australia, in March 2011, at which Professor Zamboni was a keynote speaker it was observed that 'the contribution made by Professor Zamboni in the field of MS, represents innovation of a high order – especially in Enhancing the Quality of Life Perceptions of people living with Multiple Sclerosis'. This paper explains why:

Lifetime Continuous Care
MS Australia, in a 2008 submission to the Australian Government, highlighted the need for improved coordination in the delivery of dedicated lifetime continuous care programs and services (including respite) for people with MS. It went on to say that Australians living with MS and their families need viable alternative care models to those currently available. Many support programs are designed for static disability groups or ageing, and do not cope with increasing and changing needs. The submission observed ‘people with MS pose a significant challenge due to the changing nature of their condition which does not respect waiting lists’ A priority in dealing with the unmet demand is overhauling the interfaces of the various care and support programs with and across government jurisdictions.

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