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

A Voice for People Affected by MS


 
Regional Support & Satisfaction Levels

CCSVI Australia

'' Access to services & workforce adequacy is poorest in regional areas'' TurnOnthe Tap
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A wide ranging study by Access Economics (2005), titled Acting Positively - The Strategic Implications of MS in Australia observes that "people with MS are over-represented in rural and regional areas, where access to services (particularly respite) and workforce adequacy (notably medical) is poorest". Some 5 years later the Access Economics findings were echoed in a Needs Analysis of Australians with MS prepared by Deakin University in collaboration with MS Research Australia in November 2012.
 
SERVICE PROVISION SATISFACTION LEVELS
The 2012 analysis involved 2,676 participants from all States and Territories, 55% of whom described their symptoms as moderate to severe. Respondents with the greatest degree of symptom severity experienced the greatest number of unmet environmental needs. The major symptoms (Table 7) experienced were fatigue, heat intolerance, walking difficulties and muscle weakness - these findings are consistent with an earlier study of 2618 people registered with the NSW MS Society in 2001.
The Needs Analysis,  demonstrated that the level of satisfaction with the availability and quality of services surveyed reduced the further participants lived from metropolitan regions, such that participants in the remote areas were least satisfied with the services, followed by rural, regional and metropolitan. The following table illustrates the the impact of this 'geographic isolation factor' as related to overall numbers of people with MS according to State. Researchers recommended that strategies are developed to address 'isolation issues' with the aim of improving services availability
An extrapolation of data from the publications "Needs Analysis of Australians with MS - 2012'' and  the "Economic Impact of Multiple Sclerosis in Australia - 2010
Demographics of MS Populations NSW VIC QLD WA SA TAS ACT
Non Metropolitan - comprising regional, rural and remote 3,196 2,389 1,684 648 579 452 36
Percentage of State MS Population 51% 36% 53% 28% 32% 63% 10%
Estimated State MS Population 6,268 6,637 3,179 2,313 1,809 718 360
These figures are somewhat lower than the 2009 Census that identified the Australian MS population as 23,700 - Access the 2009 Census.
Given that an estimated 1,000 people are newly diagnosed each year the 2013 population is possibly in the vicinity of 26,000. On this basis the aforementioned State Projections should be increased by a minimum of 12%
ISOLATION FACTORS IN AUSTRALIA
The Needs Analysis, demonstrated that the level of satisfaction with the availability and quality of services surveyed reduced as the participant lived further from metropolitan regions, such that participants in the remote areas were least satisfied with the services, followed by rural, regional and metropolitan. Over and above the issues highlighted by Access Economics, these 'isolation factors' are exacerbated by disability level, extreme distances, poor or no public transport, minimal/inappropriate support, access to information and financial considerations - find out more
SUPPORT SERVICES , NETWORKS AND DEMOGRAPHICS
 
Many of the following (or comparable) services can be accessed through Australasian MS organisations or Government Agencies. While many of the examples cited relate to services in the eastern States of Australia they typify the types of support more broadly available - browse a particular support service that may interest you. Click on your State/Region to find out more about support available through MS organisations in your area. 
NSW VIC ACT QLD SA/NT TAS WA NZ
1800 042 138 1800 042 138 1800 042 138 1800 287 367 08 7002 6500 1800 676 721 1800 022 222 0800 675 463
Services Services Services Services Services Services Services Services
Support Networks Support Networks Support Networks Support Networks Support Networks Support Networks Support Networks Support Networks
Demographics Demographics Demographics Demographics Demographics Demographics Demographics Demographics
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. Geelong.
 

SUPPORT
SERVICES - SOME EXAMPLES
Newly Diagnosed
Program

The Newly Diagnosed Program provides a source of support at the time of diagnosis and access to relevant information and education on MS and its management - the program includes information sessions and telephone conferences - providing you with accurate information about MS and a great way of having your questions answered by speaking with a rehabilitation specialist, nurse and outreach worker and by talking with other people who have MS and their families  find out more about this support.

Networking Across Australia

Over and above support provided through MS organisations there is a wide range of Networking options. 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 find out about Networking across Australia

Helping Hands

The Road Map also includes details of a wide range of often government related services including case management, computer loans, continence assistance, custom designed aids, home care, home modifications, home nursing, income support, independent living centres, mobility aids, occupational therapy, physiotherapy, respite care, telecommunication subsidy, transport and mobility - read more about support for activities of daily living.

Treatment
 Support

A comprehensive, program whereby a team of regionally based highly experienced Specialist Nurses are available to provide information on immunotherapy medications, access to education and training in injection techniques for people commencing a medication, advice on how to manage any side effects, follow-up support in the ongoing management of the medication, resources on other medications used in the management of MS - read more about this program or discuss your needs with your regional MS community support nurse.

MS Connect

MS Connect is a telephone and email based information and support program staffed by a team of experienced health professionals, which enables you to speak to a nurse, physiotherapist, occupational therapist or outreach worker - people who can benefit from this free service include, people with MS, families and friends, health professionals, community service providers, employers, students, the general public - access MS Connect.

Carer and
Family Support

A service to assist the family or carer for someone who has MS. Aims to facilitate the necessary care and assistance to a family member, a friend, or a person with whom a person with MS has a strong relationship - Carer registration is a good starting point if you are  interested in receiving information on new initiatives relating to family members, friends or carers of someone living with multiple sclerosis, would like to be kept up-to-date on new publications, programs, education or workshops or would like to be offered opportunities where you can become involved in new initiatives around service delivery.

Guideline for Service Providers 

MS Practice is a series of publications designed to support allied health professionals in the symptom management of people with multiple sclerosis. The series discusses various symptoms associated with MS and provides health professionals with evidence-based information and clinical practice recommendations to enhance the quality of care and outcomes for people with MS. Subjects dealt with are Ataxia and Tremor, Aquatic exercise, Balance, Complex Symptoms, Pain, Spasticity, Strength and Cardiorespiratory Exercise - more about this service. 

  Facts Sheet RM1734MS
Road Map Reference

 

 

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