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

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 The Pathways Methodology

CCSVI Australia

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  A LEADERSHIP MODEL  
 
Together we Can The Pathways approach evolved from a range of patient-centred initiatives inspired by the Multiple Sclerosis Society of NSW in partnership with the highly respected St Vincent's Hospital at Lismore during the period 2003 to 2007. For many years St Vincent's was the hub for the provision of all public rehabilitation services in the region and adjoining localities. While it is no longer involved in the provision of public rehabilitation services much can be learnt from developments during this period. In keeping with the spirit of recommendations by The Australian Commission on Safety and Quality in Health Care an overview of this initiative is now available - click here to access a case study relating to these developments.
 
  WHAT DOES A PATIENT CENTRED APPROACH INVOLVE?  
  The importance of a patient-centred approach to MS care has been highlighted in the literature for more than a decade. It involves moving away from the ‘one size fits all theory’ by recognising the need to develop services with patients, users and carers rather than for them. It is responsive to different groups of patients and to particular needs. 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. This requires service providers  to actively seek the views of patients about what they want the service to deliver - and then to deliver that vision. Only then can a service be truly call patient-centred - read more about a patient-centred approach  
  GETTING STARTED IN THE NORTHERN RIVERS REGION  
  Developments at St Vincent's marked the starting point for 'road testing' a patient-centred approach to MS care in the region. A series of "evaluation building blocks" were established - the first of which involved a Preliminary Study. This was followed by programs of Education and Research aimed at establishing awareness and a knowledge base (the MS Road Map) to guide the process. The Pathways reporting system was developed in parallel with these developments for the purpose of highlighting shortfalls in accessing MS services, support and participation in planning..  
 
Pathways Project The Pathways approach to evaluation involves mapping the availability/accessibility of support for people with multiple sclerosis against 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 PATHWAYS REPORTING SYSTEM  
Underpinning the evaluation process is a reporting system that highlights, on a triennial basis, regional shortfalls in accessing MS services and support. Comprising a series of tables it identifies, by reference to 43 internationally acknowledged MS referral pathways/benchmarks, services most in need of review - further categorised according to six 'phases' of MS care. The inclusion of 'effectiveness' indicators for each benchmark enable the identification of services most in need of review.
 
Evaluation The effectiveness indicators identify regional access/practices for each pathway as either OK, Fair, Poor, Minimal or None.  In order to further prioritise follow up action the ratings of OK and Fair are regarded as being generally satisfactory with more in depth attention given to the ratings of Poor, Minimal or None. The broad time spans associated with the Pathways reporting cycles also enables the identification of trends in the availability of, and access to, regionally accessible MS related services and support.
 
  By providing understandings of underlying issues, service providers and related agencies (individually or in partnership), are in better positions to address issues of most concern to MS communities.  
  HIGHLIGHTING REHABILITATION ACCESS TRENDS  
  Figure 1 - Trends - All referral pathways  
 
All Referral Pathways : comprising 43 recommended referral pathways. Key Issues -  MS rehabilitation has been described as a process that helps a person achieve and maintain maximal physical, psychological, social, and vocational potential, as well as quality of life consistent with physiological impairment, environment, and life goals. Achievement and maintenance of optimal function are essential in a progressive disease such as MS.
  Year OK Fair Minimal Poor None Total
1.1 2005 17 - 40% 20 - 46% 1 - 2% 3 - 7% 5 - % 43
1.2 2008 9 - 21% 9 - 21% 9 - 21% 7 - 16% 9 - 21% 43
1.3 2011 8 - 19% 9 - 21% 8 - 19% 7 - 16% 11 - 25% 43
Click on the year for a more detailed snapshot
 
Summation: The decline in satisfactory (pathways rated OK and Fair) levels of access from 86% in 2005 to 40% in 2011 is significant and a matter of concern. To better understand the reasons for this see Figure 4 (Moderate Impairment Phase) and Figure 6 - (Empowerment/Quality of Life Indicators). There is a strong correlation between these 'empowerment' indicators and a patient-centred approach to service design and delivery.  
  DIGGING DEEPER  
  Of greatest concern are a number of (post 2005) downward trends at a time when the number of pwMS in need of support is growingRuth Cotton, a highly regarded health care consultant and a member of the regional MS community Chaired a more in depth review (commencing in 2008) dealing with these  developments. The review team subsequently provided a highly informative report, for discussion and advocacy purposes, titled 'Towards a more cohesive MS Network of Care in the Northern Rivers Region of NSW'  
 
Pathways Report The Federal Member for Page, Janelle Saffin MP, in referring the Pathways report to Chris Crawford, CEO, North Coast Area Health Service (NCAHS), said  "I recently met with Peter Sullivan, coordinator, Northern Rivers MS Network of Care and discussed with him the issue of care for people with MS. I then read the report that he and Ruth Cotton have produced that detailed clearly the gaps in service or more aptly the overall approach that is required to provide the basic service required -  more about this report and subsequent developments
 
  TRENDS ACCORDING TO DIAGNOSTIC STAGES/DISABILITY LEVELS  
 
 
  Figure 2 - Diagnostic Phase  
 
Diagnostic Phase: comprising 7 recommended referral pathways. Key Issues - Certain, clear diagnosis: Appropriate support at the time of diagnosis: Access to information: Continuing education
  Year OK Fair Minimal Poor None Total
2.1 2005 6 - 86% 1 - 14%       7
2.2 2008 6 - 86% 1 - 14%       7
2.3 2011 5 - 71% 2 - 29%       7
Click on the year for a more detailed snapshot
 
  Summation: A generally satisfactory trend. When newly diagnosed, mobility issues are not necessarily a factor in accessing services. Many newly diagnosed frequently report travelling to specialist neurological services in Sydney, Gold Coast or Brisbane. There is also a resident neurologist within the region. Also In 2009 MS Australia located (for the first time) an MS nurse in the region. The downward trend in 2011 relates to a need to clarify an existing referral pathway relating to MS diagnosis. Currently expressed as "Diagnosis should be made by a consultant neurologist, with interest in MS" a more relevant expression could, as a minimum, be "Diagnosis should be made by a consultant neurologist, with interest in MS, also having regard to the outcomes of screening relating to the presence of vascular irregularities including CCSVI - find out more  
 
 
  Figure 3 - Minimal Impairment Phase  
 
Minimal Impairment Phase: comprising 9 recommended referral pathways. Key Issues - Continuity in service provision, Access to support and informed advice, Access to appropriate treatment and self management, Access to treatment for conditions unrelated to MS.
  Year OK Fair Minimal Poor None Total
3.1 2005 1 - 11% 5 - 55% 1 - 11% 2 - 22%   9
3.2 2008 1 - 11% 2 - 22% 4 - 44% 1 - 11% 1 - 11% 9
3.3 2011 1 - 11% 3 - 33% 3 - 33% 1 - 11% 1 - 11% 9
Click on the year for a more detailed snapshot
 
  Summation: Many people may experience long periods of minimal impairment throughout the course of their disease. Longitudinal studies show that while around 50% of people with MS are independently mobile after 15 years, and can live normal and productive lives, they still need statutory and health service provision. It is important for health professionals to empower people to take ownership of their own care with the support of services. Notwithstanding, the decline in satisfactory (pathways rated OK and Fair) levels of access  from 61% to 44% is significant. - more about the Pathways Review that examines these issues in more detail.  
 
 
  Figure 4 - Moderate Impairment Phase  
 
Moderate Impairment Phase: comprising 9 recommended referral pathways. Key Issues - Responsiveness of services, Access and location, Expertise, Communication and co-ordination, Self Management, Access to Rehabilitation.
  Year OK Fair Minimal Poor None Total
4.1 2005 3 - 33% 5 - 55%     1 - 11% 9
4.2 2008   2 - 22% 2 - 22% 1 - 11% 4 - 44% 9
4.3 2011   1 - 11% 2 - 22% 2 - 22% 4 - 44% 9
Click on the year for a more detailed snapshot
 
  Summation: An inability to access appropriate rehabilitation, including multi-disciplinary assessment, primarily by those beginning to experience mobility problems, is an important factor in the decline in satisfactory (pathways rated OK and Fair) levels of access from 88% to 11% is dramatic and very disturbing. Practitioners should consider referral of individuals with MS for assessment by rehabilitation professionals whenever there is an abrupt or gradual worsening of function or increase in impairment that has a specific impact on the individual's mobility, safety, independence, and/or quality of life - - more about the Pathways Review that examines these issues in more detail.  
 
 
  Figure 5 - Significant Impairment Phase  
 
Significant  Impairment Phase: comprising 11 recommended referral pathways
  Year OK Fair Minimal Poor None Total
5.1 2005 2 - 18% 7 - 63%   1 -  9% 1 -  9% 11
5.2 2008 1 -  9% 4 - 36%   3 - 27% 3 - 27% 11
5.3 2011 1 -  9% 3 - 27%  -  4 - 36% 3 - 27% 11
Click on the year for a more detailed snapshot
 
  Summation: Here we see a decline in satisfactory ratings (OK and Fair) from 81% in 2005 to 36% in 2011 with a corresponding increase ratings of Poor or None - more about the Pathways Review that examines these issues in more detail.  
 
 
  Figure 6 - Empowerment/Quality of Life Indicators 2002 to 2011  
 
Empowerment/Quality of Life Indicators  comprising 7 recommended indicators
  Year OK Fair Minimal Poor None Total
6.1 2005 5 - 71% 2 - 29%       7
6.2 2008 1 -  14%   3 - 43% 2 - 29% 1 -  14% 7
6.3 2011 1 -  14%   3 - 43%   3 - 43% 7
Click on the year for a more detailed snapshot
 
  Summation: Empowerment/QoL indicators identify important processes that collectively enable service users and carers to play an active part in the planning and provision of services that are effective and appropriate. There is a strong correlation between these 'empowerment' indicators and a patient-centred approach to service design and delivery. Frustrations flowing from a lack of involvement negatively impact on QoL perceptions resulting in a diminished ability to 'self manage' the progressive and cumulative nature of MS related issues. There is also be a negative impact for service providers in terms of job satisfaction in the delivery of services  
 
 
  Figure 6.01 - Trends - Empowerment/Quality of Life Indicators 2002 to 2011  
 
 
Accessibility of Referral Pathways According to Empowerment/QoL Indicators

1 July 2002 to 30 June 2011
Fair
OK
2005
None
Poor
Minimal
OK
2008
None
Minimal
OK
2011
   
 
  Summation: Given the strong correlation between these 'empowerment' indicators and a 'patient-centred approach' to service design and delivery it can be concluded that the dramatic, post 2006, decline in 'ownership' by pwMS of the decisions giving rise to their well being is a major contributor to an ongoing decline in regional service access, as illustrated at Figure 1  
 
 
  Figure 7.1  Accessibility of Referral Pathways According to Stages - 3 years ended July 2005  
 
 
Accessibility of Referral Pathways According to Stages

1 July 2002

 to

 30 June 2005
Fair
OK
Diagnostic Stage
Poor
Fair
OK
Minimal Stage
None
Fair
OK
Moderate Stage
None
Poor
Fair
OK
Severe Stage
Fair
OK
Empowerment
   
 
  Summation: A very encouraging picture with 86% of all pathways rated in the satisfactory range of OK and Fair including 100% in the Diagnostic and Empowerment categories. While responsibilities for providing support and services during this period extended well beyond the rehabilitation role of St Vincent's it is very clear that St Vincent's, in collaboration with MS Australia, the MS community and a host of related service providers, played a catalystic role in the seamless and ongoing delivery of support for families living with MS. This was especially so for the estimated 150 families where a family member has moderate to significant/severe care needs - more about this period.  
 
 
  Figure 7.2  Accessibility of Referral Pathways According to Stages - 3 years ended July 2008  
 
 
Accessibility of Referral Pathways According to Stages

3 years ended July 2008
Fair
OK
Diagnostic Stage
None
Poor
Minimal
Fair
OK
Minimal Stage
None
Poor
Minimal
Fair
Moderate Stage
None
Poor
Fair
OK
Severe Stage
None
Poor
Minimal
OK
Empowerment
   
 
  Summation: A very discouraging picture with only 42% of all pathways rated in the satisfactory range of OK and Fair - compared to 86% in 2005. Empowerment ratings dropped from 100% to 14%. Support for Moderately disabled dropped from 89% to 22% while support for significantly disabled dropped from 81% to 36%. To the extent that gaps have a cumulative impact on addressing care needs from one stage to the next the impact on those with progressively increasing care needs is significantly greater than reflected by these 'statistical snapshots'. The flow on impact to carers is dramatic.  
  To better understand the significance of this progressive decline the Network of Care instituted (2008) what became known as the Pathways Project. Ruth Cotton, a highly regarded health care consultant and a member of the regional MS community volunteered to Chair this review. The Pathway's team subsequently provided a report, for discussion and advocacy purposes, titled 'Towards a more cohesive MS Network of Care in the Northern Rivers Region of NSW' to be read in parallel with the document that describes a case study on this topic.  
  This report provides an overview of the support needs of people with MS and approaches to addressing those needs in the Northern Rivers region since 2002. It also details the outcomes of "road testing" evaluation benchmarks suggested by MS Australia, highlights the outcomes of mapping regional approaches to service delivery against these benchmarks and identifies and prioritises shortfalls associated with regional access to recognised MS referral pathways -  more about the Pathways Review  
 
 
  Figure 7.3  Accessibility of Referral Pathways According to Stages - 3 years ended July 2011  
 
Accessibility of Referral Pathways According to Stages

3 years ended July 2011
Fair
OK
Diagnostic Stage
None
Poor
Minimal
Fair
OK
Minimal Stage
None
Poor
Minimal
Fair
Moderate Stage
None
Poor
Fair
OK
Severe Stage
None
Minimal
OK
Empowerment
   
  Summation: While the areas of shortfall were first highlighted for the review period 1 July 2005 to 30 June 2008 they remained virtually unchanged for the review period 1 July 2008 to 30 June 2011. For the first time there was a decline in access to referral pathways associated with the Diagnostic Stage caused by concerns about a need for more effective screening to better detect disorders sometimes associated with, or misdiagnosed as MS, i.e vascular irregularities, lyme disease and bacterial infections such as Chlamydia pneumoniaecm.  More about the 2008 review and associated outcomes.  
     
 
 

 

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, and clear local standards for measuring success.


Patient Centred Care
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


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.
Measuring Quality of Life in 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.
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. 
The NSW Chronic Care Program
This program was established under the NSW government Action Plan for Health in 2000 to address the challenges presented by the increase in chronic disease. The Program seeks to improve the quality of life of people with chronic and complex conditions, their carers and families and prevent unplanned and avoidable hospital admissions. The program has, as one of its aims, 'identifying and enhancing uptake of models of care coordination, care planning and multidisciplinary care for people chronic disease'. While MS is not currently included in this program it offers potential to complement the aim of 'Evaluating the quality of life of people with MS and reducing the impact of MS on the families and carers of those with multiple sclerosis' 
National clinical guidelines for diagnosis and management in Multiple Sclerosis
Developed (2003) by the National Collaborating Centre for Chronic Conditions at the Royal College of Physicians - UK. The guideline cover the full range of care that should be available  to adults of all ages with MS. These guidelines evolved from earlier far sighted research (2002) by the Multiple Sclerosis Society of Great Britain and Northern Ireland,  the MS Professional Network and the MS Community. The guidelines include the observation that inpatient and outpatient rehabilitation facilities are critical and should be widely available.  Recommendations include that self referral to rehabilitation services should be available to every person with MS when they need them, usually when they develop any new symptom, sign, limitation on activities or other problem, or when their circumstances change. The comment is also made that health service professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a ‘hidden’ problem contributing to their clinical situation, such as fatigue, depression, cognitive impairment and related issues. The importance of developing a 'seamless' service from a client perspective is emphasised.
Rehabilitation Recommendations for Persons with Multiple Sclerosis
In June 2007, the Medical Advisory Board, National Multiple Sclerosis Society USA published 'Rehabilitation Recommendations for Persons with Multiple Sclerosis' by way of guidelines for physicians, nurses, therapists, insurers, and policy makers regarding the appropriate use of rehabilitative therapies in MS. These guidelines define rehabilitation in MS as "a process that helps a person achieve and maintain maximal physical, psychological, social, and vocational potential, as well as quality of life consistent with physiological impairment, environment, and life goals". Achievement and maintenance of optimal function are essential in a progressive disease such as MS. The guidelines observe that rehabilitation is considered a necessary component of comprehensive, quality health care for people with MS, at all stages of the disease, occurring in many scenarios and practitioners should consider referral of individuals with MS for assessment by rehabilitation professionals - including rehabilitation physician and occupational, physical, and speech and language therapists practitioners - "when there is an abrupt or gradual worsening of function or increase in impairment that has a specific impact on the individual's mobility, safety, independence, and/or quality of life".
Acting Positively - The Strategic Implications of MS in Australia
A wide ranging study by Access Economics (2005) that includes extensive demographic data relating  to the prevalence of MS nationally. The study observes  ‘Smarter use of new information technologies can assist in delivering health and support services to people in rural and remote areas, including web-based  information resources and messaging, moderated chats and forums, videoconferencing and clinical communications’. The study also 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" 
 
   

 

 

 

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