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

A Voice for People Affected by MS

 A Patient-Centred Case Study

CCSVI Australia

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Rights of those with Disabilities  News Headlines What is Patient-Centred Care? CCSVI Research Database
The Northern Rivers area of New South Wales is one of the fastest growing geographically disbursed regions (population exceeding 300,000) in Australia with population increases around double the national average. It has disproportionately high MS and aging populations associated with population movements from cooler regions - this provides many health care challenges. For many years the highly respected St Vincent's Hospital at Lismore was the hub for the provision of all public rehabilitation services in the region and adjoining localities.
  "To improve transparency, Australian policy makers and regulators should make data regarding patient care
experience in health services publicly available via websites". This case study is provided as such a resource.
 Australian Commission on Safety and Quality in Health Care - Recommendation 5
Together we Can Commencing in 2003, and consistent with a patient-centred approach to health care management, it convened a series of discussion forums (known as the Horizon Group) aimed at better understanding the regionally unmet care needs of people with multiple sclerosis. The Horizon Group fostered a series of pilot programs and practices aimed at better understanding, addressing and evaluating approaches to addressing these needs. More broadly, these discussions also highlighted a potential need for an ongoing patient-centred Reference Group to better explore some of the more complex issues raised by the MS community.
Related discussions took place at Ballina Hospital. Each of these forums comprised people with MS (primarily those with moderate to significant care needs), a diverse range of health care professionals and personnel from MS Australia (then known as the Multiple Sclerosis Society of NSW). While St Vincents is no longer involved in the provision of public rehabilitation services much can be learnt from these developments.
  "Patient-centred care is an approach to the planning, delivery, and evaluation of health care that is grounded in
mutually beneficial partnerships among healthcare providers, patients, and families - it is the right thing to do".
  Australian Commission on Safety and Quality in Health Care
Feedback from these forums confirmed that regional health related MS issues that impact on care needs are consistent with those identified in a 2001 analysis of 70% of the NSW MS population and in a subsequent Australia wide survey. The forums also highlighted significant imbalances in matching these issues with easy to access relevant information and regionally accessible support services. In terms of content the over-riding need related to guidance in maintaining and improving function. Running in parallel was an associated need for support for activities of daily living and basic social routines. Subsequent Australian studies confirmed that people with MS are over-represented in rural and regional areas, where access to services and workforce adequacy (notably medical) is poorest.
Frustrations flowing from these imbalances were identified as having a negative impact for both Service Providers and on the Quality of Life (QoL) perceptions of those in need of care. The cumulative affect of these issues, at times over decades, was also impacting on the well being of carers.
Sharing Experiences A common observation was that a lack of evidence based and accessible information about service delivery 'baselines' made it difficult for many individuals (including service providers) to identify and agree upon the nature, relevance and accessibility of approaches to MS care and in regional shortfalls thereto. This was especially so for those with moderate to severe levels of impairment whose needs are greater. A subsequent submission to the Australian Government, by MS Australia, described support for pwMS as "the need for lifetime continuous care programs and services".
Two other issues were highlighted. The first, identified by those diagnosed with the relapsing/remitting form of MS, was a lack of information at 'arms length' from pharmaceutical companies about the long term impact of immunotherapy medications on the nature and severity of the aforementioned issues - including the rate of MS progression. While it was known that the U.K based National Institute for Health and Clinical Excellence (NICE) had originated a study (2002) on this topic little was known about the outcomes - more on this topic. The second was that less than 50% of participants identified as being registered with MS Australia - a lack of perceived regionally accessible benefits being the most commonly cited reason for non registration - see later. 
  "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
A number of  Action Steps were identified to gain a more 'in depth' understanding of underlying issues - the overall aim being to increase access to services which improve Quality of Life perceptions, "road test" evaluation methodologies and provide a possible model for similar reviews elsewhere.  It was envisaged as a long term process of continual improvement with each step leading to better understandings of underlying issues and improvement options that service providers and related agencies, individually or in partnership, may wish to address. .
Critical to the overall process was the empowerment of the regional MS community to guide developments. Frustrations flowing from a lack of such involvement negatively impact on QoL perceptions resulting in a diminished ability to 'self manage' the progressive and cumulative nature of MS related issues. A collaborative effort, led by the MS community in partnership with key service providers and decision makers from MS Australia was identified as fundamental to this approach - with special regard to the involvement of pwMS who may find it difficult to participate - an approach strongly endorsed by MS Australia.
  "Improving patient care experience should be an indicator of Quality and reflected in healthcare reporting
and funding models"
 Australian Commission on Safety and Quality in Health Care
In terms of evaluating progress. a triennial reporting cycle was adopted in order to monitor long term trends and foster environments of continuous improvement. Patient-centred 'empowerment' performance indicators were identified to reflect the extent to which service users and carers played an active part in the planning and provision of services. This process does not set out to evaluate clinical practice but is relevant in highlighting shortfalls in gaining timely and appropriate access to such practice  -  example.
To whatever extent practicable the aim is to develop 'Regional Solutions to Regional Issues' taking into account existing local structures, resources, professional and service links and the needs and expectations of people affected by MS. MS Australia agreed to use its best endeavors to advocate/address broader based issues should such a need eventuate
It rapidly became evident that there needed to be a strong regional educational program to better enable service providers and pwMS to identify services specific to needs - and in shortfalls thereto. As part of this process a decision was made to develop a web accessible, evidence based, 'Road Map' to multiple sclerosis support services for use by people with MS and health care professionals as a priority issue. The Area Health Service agreed to contribute to the process by hosting the Road Map during its developmental stages. Peter Sullivan, a local information technology consultant and a member of the regional MS community, volunteered to oversight the Road Map development.
The education program was undertaken (2003 to 2008) with the support of the Northern Rivers Multiple Sclerosis Support Group - who agreed to incorporate educational segments of this type in each of its monthly meetings. This group was first established in June 2003 (at the instigation of Ballina Hospital and MS Australia) with the aim of "Providing positive and supportive opportunities, for people with MS and their carers, to participate in activities that contribute to their well being’". Personnel from the Murwillumbah and Grafton support groups also offered their support. Currently based at Kingscliff, over the years group meetings have been convened at a range of locations across the Northern Rivers region. Leadership from within the MS community is a key issue. New members and participation are always welcomed with open arms.
  "Education programs should engage patients and families as teachers and collaborators, rather than solely
 as cases to be studied"
 Australian Commission on Safety and Quality in Health Care - Recommendation 7
To complement this and to also avoid duplication of effort, MS Australia provided regular mail outs to all registered people in the Northern Rivers Region regarding the subject matter and venues for these educational presentations. The outcomes of each presentation were similarly provided as a further means of engendering awareness and feedback - examples of some of these subjects.
Recognising that many pwMS in the region were not registered with MS Australia this program was further supported by extensive regional wide monthly radio and newspaper coverage over several years. This enhanced regional 'visibility' also gave rise to increases in the percentage of the regional MS population registered with MS Australia and in the identification of pwMS at risk of 'falling through the gaps' by virtue of isolation. St Vincent's also reported increases in the numbers of pwMS participating in both its residential and non residential rehabilitation programs. The collaborative nature of the awareness programs, frequently involving St Vincent's rehabilitation experts, enabled the 'fast tracking' of support for those most in need.

More than 50 of these educational presentations, covering a wide range of topics and involving around half of the Northern Rivers regional MS community and a diverse range of service providers, were conducted at a range of locations across the region. The knowledge gained also became an important resource for the development of the Road Map and the ongoing evaluation of the relevance and effectiveness of regional MS referral pathways.
From the earliest stages it was clear that, for those with moderate to severe levels of disability, a knowledge of, and an inability to regionally access appropriate MS rehabilitation was a major issue - supporting the previously identified need for a better understanding of underlying issues.
An important byproduct of 'fast tracking' those most in need was identified by many carers who found that access to scheduled residential and/or non residential based rehabilitation by those they cared for also provided opportunities for much needed and long overdue respite from their often lifetime caring roles. It also provided them with access to social workers familiar with the issues and needs of families living with MS. In a subsequent submission to the Australian Government, MS Australia described support for pwMS as "the need for lifetime continuous care programs and services".
These observations reinforce findings (2006) by Carers NSW.  In a report titled "Respite Reconsidered : A discussion of key issues and future directions for carer respite" it observed "respite is better defined by the outcomes it produces rather than the specific service delivery model, as flexibility in respite services is a key principle of effective respite. We hope to reach a clearer shared understanding between government, service providers and carers about what respite is and what it aims to achieve. It may be necessary to rethink terminology used when referring to respite"
  "A patient-centred approach makes care safer and of higher quality. It also satisfies an ethical imperative – 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
The positive outcomes reported by MS carers consequential upon focusing on the role of rehabilitation in a respite context is significant - both in developing models of respite care for MS communities and in approaches to respite funding.
The potential role of the NSW Chronic Care Program in addressing some of these issues was raised by St Vincent's medical staff. This program was originally established under the NSW government Action Plan for Health in 2000 to address the challenges presented by the increase in chronic disease. The program had, as one of its aims, 'identifying and enhancing uptake of models of care coordination, care planning and multidisciplinary care for people chronic disease'. Now better known as the Connecting Care (Severe Chronic Disease Management) Program.  Subsequent enquiries established that MS is not included in this program and there do not appear to be any plans for its inclusion - find out more
In consequence and in parallel with the aforementioned education/awareness campaign it was resolved to draw upon acknowledged high quality MS care practices across the globe, to serve as benchmarks/guidelines for evaluating regional MS service delivery and to make this information available in a friendly and "uncluttered" form via the Road Map. Existing services accessible by people with MS to be similarly identified.
MS Australia To this end St Vincent's sought advice from senior personnel from MS Australia relating to guidelines relevant to the Australian environment. Robyn Faine, the Client Services Manager for the recently reconstructed MS Ltd (MS Australia NSW/Vic/ACT) and other senior personnel subsequently visited the region.
Robyn advised that Australia has no nationally endorsed guidelines for the primary and secondary care of people with multiple sclerosis nor was she aware of any immediate plans for their development. She did however commend guidelines recently developed in the UK as providing a strong evidence based model and encouraged the 'road testing' of this model in the Northern Rivers region, not only to address many of the already identified shortfalls but also to provide knowledge that may be useful elsewhere - especially in non metropolitan areas of Australia.
Strategy On Robyn's advice, it was decided to underpin the proposed Evaluation Action Strategy with 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.  Dr Gary Fulcher (MS Australia's Research Director and Clinical Psychologist) provided valuable insight into issues relating to Quality of Life when living with MS.
Also referenced was a needs survey of an estimated 70% of all people living with MS in NSW in 2001. Titled Living With Multiple Sclerosis in New South Wales at the Beginning of the 21st Century  it summarised, inter alia, the 20 most frequent most issues experienced by pwMS at that time. A subsequent Australia wide survey reinforced these findings.
   ‘Qualitative evidence’ may lack the scientific rigor of, for instance, randomised controlled trials, but there is growing acceptance that it brings a body of knowledge that not only complements other forms of evidence,
 it enables a greater understanding of the decision-making processes involved in the provision of care'
UK Charter for MS Services
It was also noted that MS Nurses Australia (MSNA) has, as one of its aims, "To establish standards of Nursing care in Multiple Sclerosis and promote excellence". In 2004 MSNA published the first edition of the Australian MS Nursing Manual - while an important resource in its own right more is needed. There needs to be a nationally endorsed  process that enables pwMS, as a matter of right, to access recognised 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
When discussing the significance of the initiatives instigated at St Vincent’s, Robyn highlighted the importance of people with MS having opportunities for a "respected seat at the table" (individually or in collaboration) in all matters affecting their well being.
Robyn said that it was "great to see in practice, a hospital with a strong consumer focus, particularly in regard to the planning of services which has been a cooperative effort over the past 12 months involving personnel from St Vincent’s, members of the Northern Rivers Multiple Sclerosis Support Group and the MS Society".
She went on to say "A major thrust of this effort has been the importance of providing opportunities for people with MS to be involved in all stages of the planning process".
Details of the majority of the aforementioned research references progressively became available through the Road Map. While some areas of the Road Map are regionally specific, the issues, research references and associated examples are relevant across a broad spectrum of MS care - access the Road Map
The first stage of bringing together key aspects of the research was largely completed by 2006, including the development of the Road Map, continuing with the Evaluation, and progressing the educational forums involving the MS community and service providers. By 2011 the Road Map was attracting around 20,000 visitors annually.
These consultative processes also progressed towards establishing an 'in principal' agreement between MS Australia and St Vincent's Hospital for a formal 'Partners in Care' relationship pertaining to the well being of families living with MS in the Northern Rivers region of NSW. Such a relationship to be progressively extended to enable the participation by all service providers in the region. Groundwork associated with this initiative progressed well - see discussion draft of proposed media release.
As part of the partnership MS Australia agreed to work with health professional staff at St Vincent’s in areas such as MS specific education and support for best management of MS clients - to be provided by the MS Society’s MS Specialists via face-to-face education sessions, teleconferences and videoconferences. As an example, the Society’s Neuro psychologist subsequently attended and provided a very well received in-service presentation to staff on cognition as it relates to MS and in particular the considerations for rehabilitation programs
St Vincent's unexpected withdrawal (late 2006) from all public rehabilitation services in the region, impacted on the momentum of many of the improvements achieved or planned. This unforeseen development identified a need to strengthen the role the evaluation process.  The vehicle for achieving this became known as the Pathways Project.
Pathways Project The Pathways approach to evaluation involves mapping the regional availability/accessibility of support for people with multiple sclerosis against 43 widely acknowledged MS referral pathways. The process does not evaluate clinical practice but is relevant in highlighting shortfalls in gaining timely and appropriate access to such practice. The inclusion of 'empowerment' benchmarks in the mapping process further highlights patient-centred practices. The ongoing outcomes are presented by way of triennial comparisons enabling the identification of trends and services most in need of review
By 2007 the Horizon Group had evolved into a more broadly based Multiple Sclerosis Network of Care. Australia's peak health advisory bodies - the National Health and Medical Research Council (NHMRC) and the Health Policy Advisory Committee on Technology (HealthPACT) - subsequently acknowledged "the importance of the Network as a source of information for individuals living with MS and their families
In 2008 the Network of Care initiated a review of both the St Vincent's pilot and subsequent developments using the Pathways evaluation methodology. The review was lead by Ruth Cotton, a well regarded health care consultant and a member of the regional MS community. The Pathways review speaks highly about the strategic importance of building upon the 'model of MS care' developed by St Vincent's in the following terms:. .
"Support during this period extended well beyond what is sometimes more "conventionally perceived" of the role and scope of rehabilitation. In this regard it was very clear that St Vincent's, in collaboration with MS Australia, the MS community and a host of related service providers, played a pivotal role in fostering a seamless, patient-centred approach to supporting families living with MS". 
"The implementation of patient-centred care requires superior organizational leadership to craft a vision for
the innovation and energise staff. Senior leaders must also have a tolerance for ambiguity, unconventionality,
 and change itself to create a supportive culture"
Research initiated by the Commonwealth Fund

"Participation was available to all families living with MS in the region - ranging from being kept informed (by Newsletter) about regionally specific developments, participation in educational briefings and planning forums, access to support groups and self referral to social workers, day and residential rehabilitation. An estimated 300 families, to varying degrees, benefited from this process. The fact that all of these developments did not progress into the planned 'Partners in Care' relationship with MS Australia is disappointing and warrants revisiting".
"Programs were delivered by multi disciplinary teams, with many of the team members having MS related experience over extended periods of time. Services included general medical assessments and allied health rehabilitation combined with seamless linkages to a host of ancillary services including MS specific ‘group therapy’. Flexible and ongoing referral pathways were an important feature of the service. The greater the level of participation the more the program evolved – as did the level of service provider MS expertise and experience"
By 2012 the Pathway's review processes had identified and prioritised significant regionally unmet access needs of people with MS in the Northern Rivers region subsequent to St Vincents closure. In doing this it also identified possible options for addressing these shortfalls. Of concern was the dismantling of the “multidisciplinary professional team” consequent upon St Vincent's closure in favor of pwMS sourcing this support from the general community.


A significantly diminished emphasis on a patient centred approach to MS care resulted in overall access satisfaction levels dropping from 86% in 2005 to 40% in 2011. Most disadvantaged were those with moderate levels of impairment experiencing mobility problems for whom access satisfaction levels plummeted from 88% to 11% - very disturbing. Worse still the multidisciplinary team fragmented with a total loss of this  expertise to the region - one of the fastest growing regional areas in Australia - read more


Find out more

Specifically the review processes detailed the outcomes of "road testing" evaluation benchmarks suggested by MS Australia, highlighted the outcomes of mapping regional approaches to service delivery against these benchmarks and identified and prioritised shortfalls associated with regional access to recognised MS referral pathways. Of equal importance, they highlighted three factors contributing to downward trends in service access and availability  .

References and Acknowledgements




A Charter for MS Services 
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 focus on Patient Centred Care and  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 - more information

Patient Centred Care in Australia
In 2011 the Australian Commission on Safety and Quality in Health Care published an extensive report titled "Patient Centred Care - Improving Quality and Safety through partnerships with Patients and Consumers" - the report is introduced as follows "A patient-centred approach makes care safer and of higher quality. It also satisfies an ethical imperative – involving patients in their own care and in the planning and governance of the health system is the right thing to do. The Commission supports organisation building skills and capacity to involve and engage patients and consumers both in their individual care and in system level improvements  It went on to say, Recommendation 4, "Improving patient care experience should be included as an indicator of Quality and reflected in healthcare reporting and funding models" - access this report
Service Provision Guidelines
Highlights key aspects of service delivery with the aim of providing a common foundation for service providers, across a wide range of disciplines, to contribute to the aim of developing a more cohesive regional network of MS care. Shortly stated, it highlights 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 is to maintain independence as far as possible and ensure that the best Quality of Life (QoL) is achieved. 
Pathways Project 
In February 2008, in response to concerns that  shortfalls in regional service delivery were having a significant impact on the well being of pwMS (especially those with moderate to severe levels of disability), the Northern Rivers Multiple Sclerosis Network of Care launched the Pathways Project.   The primary aim of the Project is to increase access of people with MS in the Northern Rivers Area to services which improve their perceptions of Quality of Life. On 17 July 2008 the Pathways planning group released a discussion paper titled 'Towards a More Cohesive MS Network of Care in the Northern Rivers Region of NSW'  for use by service providers and agencies about how to better meet the needs of pwMS in the Northern Rivers. The paper provides an evidence based framework about the most pressing needs and options for addressing those needs.
Measuring Quality of Life
People with Multiple Sclerosis: Overview of a presentation (2006 ) by Dr Gary Fulcher the NSW MS Society's Principle Clinical Psychologist  and Research Director - includes a study by De Toffol, E (2005): Doctorate of Clinical Psychology/Master of Science dissertation - University of Sydney. A purely “health-status” approach to MS rehabilitation underestimates the challenges faced by people with MS. Studies relating to the quality of life perceptions of people with MS, show that psychosocial aspects are represented much more frequently than physical aspects
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.
Developing MS Healthcare Standards:
Evidence-based recommendations for service providers
The standards were developed 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 (pwMS) across the continuum of the disease. The standards were a precursor to extensive work by the 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.  In 2004, MS Australia recommended that the standards be used as guidelines for the development of a more cohesive MS network of care in the Northern Rivers region of NSW.  



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