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What is Multiple Sclerosis? About NDIS News Headlines Quick Reference Guide
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 - a process more generally described as "MS rehabilitation".  .
This area of the Road Map highlights, by way of check lists, key aspects of multiple sclerosis rehabilitation that have application across a range of disciplines. Highlighted is the need for good quality service provision to encompass a full appreciation of each individualís nursing, personal, social and spiritual care needs and expectations - about MS Needs, Issues and Expectations.
In October 2009 NCBI published details of a study that holistically examines the wide range of issues that collectively comprise MS rehabilitation. The 'must read' study observes "While current immunomodulating drugs aim to reduce multiple sclerosis (MS) exacerbations and slow disease progression, rehabilitation aims to improve and maintain the functional abilities of patients in the face of disease progression. An increasing number of journal articles are describing the value of the many rehabilitation interventions that can be used throughout the course of the disease, from the initial symptoms to the advanced stages. An integrated team of healthcare professionals is necessary to address a myriad of problems to reduce impairments, disabilities, and handicaps - more about comprehensive care standards - the UK model.


The overall aim is to maintain independence as far as possible and ensure that the best Quality of Life (QoL) is achieved. A multi disciplined proactive approach to service delivery and the inclusion those who might find it particularly difficult to participate is frequently referenced in the literature as fundamental to achieving this aim.

Addressing imbalances in matching the needs, issues and expectations of pwMS with relevant and accessible levels of service delivery is essential. Frustrations flowing from these imbalances can have a negative impact for both service providers and the QoL perceptions of those in need of care. The observation that in many instances it is not the MS itself that is restricting a personís life, but the expectations and actions of others, is often reflected in the literature
In November 2011 Australia's peak health advisory body, the National Health and Medical Research Council (NHMRC) re-affirmed earlier advice that "Australia has no NHMRC endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis nor is it aware of any plans for their development". While this situation is far from satisfactory when compared with other countries there is a wealth of research to guide the development and provision of services to meet the varying needs of people with MS (pwMS) across the continuum of the disease.
There needs to be nationally endorsed benchmarks that enable pwMS, as a matter of right, to access internationally acknowledged referral pathways as and when needed - without this, enormous additional pressure is placed on people with MS, their families and all of those entrusted with their care. The processes of developing and maintaining such benchmarks to be consistent with the key principles of patient-centred care."
On 10 October 2014, Debra Cerasa, CEO MS Australia advised "A plan" for this work has been on the MSA agenda for some time". MSA, in conjunction with the State MS Societies National Services Leadership Group (NSLG), is currently considering how we can facilitate an appropriate review of the NICE guidelines that will be beneficial across all stakeholders, given that we have no allocated resources for such a development. I also recognise that the MS Nurses Association, the Australian Neurologists with special interest in MS,  MS clinics in hospitals and other groups also have a keen interest in this discussion. Nothing tangible has since transpired - more on this topic.
In July 2008 key aspects of this research were highlighted in what is known as the Pathways Project. This project evaluated MS service delivery in one region of Australia by comparing approaches to delivering services to pwMS with internationally recognised benchmarks and practices - especially practices in the UK and USA. While the project was confined to one Australian region the methodology, potentially, has broad application.
Of significance, the Pathways Review Team identified (page 9) five patient centred guidelines as underpinning all aspects of MS service delivery across wide ranging disciplines. They are:


1 Self management to be encouraged at all times
2 Use of coordinated and individual care management plans to occur at all stages of the care process that include options for self referral and scheduled recall to assessment and rehabilitation services
3 PwMS participate fully and make decisions about their support and care, with information and advice to help them make such decisions.
4 Service users and carers are involved in planning and provision of services
5 There are clear standards for measuring success, to facilitate service improvement 
  "Perhaps the greatest challenge is to create the time and the climate in which patients and staff can work together to plan a different way of doing things. We then have to deliver that vision. Only then will we have a service that we can truly call patient-centred".
 UK NHS Modernisation Agency
Within the foregoing context, service providers should proactively deliver holistic services consistent with the Needs, Issues and Expectations of people with MS and which reflect a good up to date understanding of the nature of MS and associated symptoms. Service outcomes should:
  Enhance client perceptions of their Quality of Life - more
  Address individual care needs according to disability levels and associated referral pathways - more
  Recognise that the management of MS can involve a multitude of interdependent health related issues,    frequently  including potentially undetected cardiovascular irregularities, necessitating a multi disciplined approach
  Include advice and guidance about accessing services that support activities of daily living and basic social routines - more
  Reflect the understandings of MS service delivery as contained in the publication 'A Charter for MS Services: the voice of people affected by MS - more
  Be conscious of the potential for possible misdiagnosis
  Be incorporated into ongoing patient-centred Care Plans. The Pathways Project found minimal evidence of such plans in recent times. This seemed to be associated with an inability to access appropriate multi disciplined assessment procedures - more.
  "A patient-centred approach makes care safer and of higher quality. It also satisfies an ethical imperative Ė involving patients in their own care and in the planning and governance of the health system "
Australian Commission on Safety and Quality in Health Care
Longitudinal studies show that around 50% of people with MS are independently mobile after 15 years and can live normal and productive lives. The MS related health care needs for this population grouping are broadly addressed via GP's and, increasingly (for those with access to the internet), by a range of readily accessible information resources. For those who are not independently mobile an inability to timely access services, either through lack of awareness or otherwise, has a 'domino' effect. For example, unresolved transport issues make it difficult to access other forms of much needed support.   
Long thought to be a neurological disorder with immune system associations it is now demonstrated that cardiovascular irregularities can be important underpinning issues in MS progression. It is being shown that creating awareness such conditions, which may include CCSVI related irregularities, can be an important starting point leading to improvements in many of the most common symptoms of MS. Keep an eye on the Network's News Headlines to stay abreast of these rapidly emerging developments.
A range of resources are available to find out more about Multiple Sclerosis, including:
* Easy access to relevant Information
* Participation in the Network of Care
* Assistance and support through MS Australia
* Regionally focused Multiple Sclerosis Support Networks



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. 





Facts Sheet RM1673MS


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