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 Evaluating Multiple Sclerosis Service Delivery

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Last Revised July 2014      
Strategy A good starting point in matching service delivery expectations with outcomes is for services to be delivered and evaluated in ways that are consistent with the Guiding Principles for the Provision of Services to people with MS as included in the (2003) publication  'A Charter for MS Services: the voice of people affected by MS'. Originally developed by the Multiple Sclerosis Society of Great Britain and Northern Island and reflected in a number of subsequent studies the patient-centred approach discussed in the Charter for MS Services has broad application in all areas of service delivery to people affected by MS. .
  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 and subsequently evaluate that vision. Only then can a service be truly call patient-centred - read more about a patient-centred approach  
  A NEED FOR STANDARDS - IMPORTANCE OF BENCHMARKS  
  Fundamental to the Guiding Principles is the need for clear standards for evaluating success - and that programs also be developed to provide advice and support for providers wishing to improve their services. Specific evaluation standards/benchmarks need also be developed at the local level, taking into account local structures, resources, professional and service links and of course the needs and expectations of people affected by MS. Working closely with people affected by MS ensures that agreed standards take account of the complex nature of MS-related care needs.  
  UK DEVELOPMENTS  
  Complementary to these guidelines is the publication "Developing MS Healthcare Standards - Evidence-based recommendations for Service Providers"' -  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 -  also used to underpin a national audit of services for people with multiple sclerosis conducted in England and Wales, funded by the Royal College of Physicians and the Multiple Sclerosis Trust.  
  This is a clinically-led evaluation/audit of the organisation, resourcing and performance of NHS funded programs with the primary goal of improving care for all people with multiple sclerosis. There is currently no equivalent program in Australia.     
 
Benchmarks The guidelines enable the establishment of evaluation benchmarks for ongoing enhancements in service delivery the progress of which is audited against these benchmarks. A process of continual improvement identifies, prioritises and monitors areas in need of upgrading - check out the Executive Summary to the 2011 audit - well worth a read.
 
  AN AUSTRALIAN PERSPECTIVE  
  MS Australia (previously known as the Multiple Sclerosis Society of  NSW) advised that Australia has no nationally endorsed guidelines for the primary and secondary care of people with multiple sclerosis nor are they  aware of any immediate plans for their development - this remains the case. They did however commend the referral pathways referenced in the publications "Evidence-based recommendations for Service Providers" and "Charter for MS Services" as providing a strong foundation for an Australian 'patient centred' evaluation model and encouraged the 'road testing' of such a 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.  
  QUALITY INDICATORS  
  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 Commission was established by the Australian Government with the support of State and Territory governments for the purpose of leading and coordinating national improvements in safety and quality in health care across Australia. 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"  
  The report, that includes generic guidelines for evaluating patient centred care, 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  
THE PATHWAYS APPROACH TO EVALUATION
  Originating in the Northern Rivers area of NSW the multiple sclerosis Pathways approach to evaluation is an interesting example. The region 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.  
 
Pathways Project The Pathways evaluation methodology involves mapping the 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  - find out more
 
  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. The overall aim is to increase access by people with Multiple Sclerosis to services which improve Quality of Life perceptions, "road test" evaluation methodologies and provide a possible model for similar approaches elsewhere  
  A LEADERSHIP MODEL  
 
Together we Can The Pathways approach evolved from a range of initiatives by 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 IS BEING LEARNT - FUTURE DIRECTIONS ?  
  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.  
  IN TERMS OF PROCESS - The review confirmed that the methodology:  
 
 
* Is an effective and efficient way of highlighting systemic shortfalls in both the delivery of services to people with MS and in a patient-centred approach to the planning, delivery, and evaluation of health care services.
*

Has particular relevance to families with increasing levels a care needs where access problems frequently present major hurdles 

*

 Is entirely consistent with MS research findings that describe MS care needs as "the need for lifetime continuous care programs and services"

*

Fits well with the need for "a multi disciplined proactive approach to service delivery and the inclusion those who might find it particularly difficult to participate" frequently referenced in the literature

* Provides a useful foundation to underpin a national "accreditation" program relating to the delivery of services to families living with multiple sclerosis.
 
 
  THE FIVE UNIVERSAL GUIDELINES - The review also highlighted five Universal Guidelines relating to all aspects of MS service delivery.  
 
 
* Self management to be encouraged at all times
*

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

*

PwMS participate fully and make decisions about their support and care, with information and advice to help them make such decisions.  

* Service users and carers are involved in planning and provision of services
* There are clear standards for measuring success, to facilitate service improvement 
  The Pathways evaluation model incorporates a number of  empowerment/quality of Life indicators consistent these guidelines
 
 
  IN TERMS OF THE ST VINCENTS PILOT - The review team said  
 
 
     
  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  
     
 
 
  IN TERMS OF SUBSEQUENT AND ONGOING DEVELOPMENTS   
  By 2012 the review process had identified a disturbing number of regional downward trends along with seven key gaps in regional service provision subsequent to St Vincent's closure.  At a time when the number of pwMS in need of support is growing these shortfalls also coincided with a significant erosion in the patient-centred strategies that underpinned the St Vincent's pilot. An emerging issue relates to an apparent lack of a 'shared vision' about the processes that best address multiple sclerosis rehabilitation.  
  THE KEY GAPS IN SERVICE PROVISION  
  Details of the seven critical shortfalls and associated responses/observations follow:  
 
Recognizing the importance of focusing on the most significant gaps, those benchmarks rated OK or FAIR were set aside. Benchmarks rated None, Minimal or Poor were highlighted for further discussion and priority setting. These discussions identified five over-riding critical shortfalls in regional service availability. Subsequent feedback highlighted two further areas of critical shortfall.
 
  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. Details of the seven critical shortfalls and associated responses/observations follow: Subsequent developments confirm that these shortfalls, to varying degrees, are relevant across Australia. Of concern is the 'domino' effect whereby the lack of availability or access to high level “core’ services places pressure not only families living with MS but also on the ability of ancillary service providers to best enhance the well being of MS clients.

The unmet service provision priorities relate to a need for, and access to
 
 
1

A core multi disciplinary professional team, with expertise in MS management, accessible locally for assessment and treatment of MS. Associated services to include

 

    * Accurate information and skilled advice about lifestyle issues and symptoms to help people make informed decisions.

Such information to include advice regarding disorders sometimes associated with, or misdiagnosed as MS, i.e vascular irregularities, including CCSVI, lyme disease and bacterial infections such as Chlamydia pneumoniaecm (CPN) - see also point 7.

 

    * Counselling for individuals and families by trained counsellors familiar with MS/chronic illness, covering psychosocial and coping issues.

2

Inpatient and outpatient rehabilitation services 

3

Respite facilities in an appropriate setting 

4

Education programs for staff and carers. Staff to be trained in the physical, psychological and psychosocial problems that occur in the later stages of MS

5

Efficient community transport for significantly disabled pwMS

6

Support for Carers

7

More effective screening to better detect disorders sometimes associated with, or misdiagnosed as MS, i.e vascular irregularities, including CCSVI, lyme disease and bacterial infections such as Chlamydia pneumoniaecm (CPN). Subsequent knowledge indicates that such screenings should be ranked with priority 1 assessments.

  Click on the priority reference number to find out about responses and ongoing developments
 
  TRENDS - SETTING THE SCENE  
  The following extract from the Pathways reporting system provides a 'statistical snapshot' of access related issues in the Northern Rivers Region for the period 1 July 2002 to 30 June 2011.  
    "Figure 1 - Trends - All referral pathways  
 
All Referral Pathways : comprising all 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
1.1 2005 40% 46%  2% 7% 5%
1.2 2008 21% 21% 21% 6% 21%
1.3 2011 19% 21% 19% 16% 25%
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) - more about the Pathways Project."  
     
 
Find out more

While communication breakdowns associated with major restructuring of regional health services were contributing factors the overall significance of the decline highlights the importance of ongoing leadership, commitment and vision to implement and maintain momentum - as with all change this is not easy. The review team provided a report, for discussion and advocacy purposes, titled 'Towards a more cohesive MS Network of Care in the Northern Rivers Region of NSW''. Much can be learnt from the responses to the report and subsequent developments. 

 
  DIGGING DEEPER  
This report (and consequential developments) provide an expansive overview of the unmet support needs of people with MS and approaches to addressing those needs in the Northern Rivers region. They also detail the outcomes of "road testing" evaluation benchmarks suggested by MS Australia, highlight the outcomes of mapping regional approaches to service delivery against these benchmarks and identify and prioritise shortfalls associated with regional access to recognised MS referral pathways. Of equal importance is the highlighting of three factors thought to be contributing to downward trends in service access and availability.
ENDORSEMENT OF THE REPORT FINDINGS
 
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
 
  The report, the discussion I had with Peter and my knowledge of how rehab operated at St Vincent's inform me the nature and level of service has diminished in quality and quantum since the rehab was relocated to Ballina Hospital. I therefore ask that you and senior staff turn your minds to this so that NCAHS can lead the planning process so that MS sufferers can receive the services they require". MS Saffin went on to say "I know it relies a lot on private practitioners but NCAHS can provide the service, the thinking and basic infrastructure" - response by North Coast Area Health Service

This subject was revisited by Janelle Saffin MP in March 2013 at which time she referred the issue to Vahid Saberi the CEO of the North Coast division of Medicare Local based at Ballina - a new national, government funded organisation established in 2011 to spearhead an organised system for primary health care across the country through a network of 61 primary health care organisations. - find out more about Medicare Local across Australia.
 
  MS Australia similarly endorsed the Report - it had previously written to the CEO of the Area Health Service to highlight concerns about consequences of St Vincent's closure. It subsequently based (for the first time), an MS Australia nurse in the region and offered to deploy its advocacy resources to facilitate acting on the findings of the Pathways Project should that become necessary. At that time, however, there were early indications (see later) of satisfactory regional resolutions to many of the key issues. For this reason the further involvement of MS Australia has been held in abeyance pending greater clarity about responses at a regional level.  
  CLARIFYING ROLES  
  A lack of clarity about long term responsibilities for the delivery of regional rehabilitation services (both public and private) over the course of the evaluation period contributed to delays and indecision in progressing dialogue about the report. Examples include, the closure of St Vincent's public rehabilitation service, the twice restructuring of Area Health Service boundaries, the opening of a major rehabilitation unit at Ballina, the opening and subsequent closure of the Lismore Private Hospital, the re-opening of private rehabilitation services at St Vincent's, the transition to an Area Health Service Governing Board, and the restructuring of the Multiple Sclerosis of NSW to become part of MS Australia.  
  THE THREE PRIMARY AREAS OF CONCERN - THE NEED FOR SUPERIOR ORGANISATIONAL LEADERSHIP IN TIMES OF CHANGE  
 

To varying degrees, members of the Pathways Team undertook dialogue with all of the above organisations to build further awareness about issues referenced in the Pathways Report. Highlighted by this dialogue were three primary areas of concern:

 
 
 
* Leadership shortfalls in enabling families living with MS to access geographically relevant programs and support appropriate to their needs.
* 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  - read more. 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.
* A disturbing lack of appreciation of the significance of rehabilitation (broadly conceived) in a multiple sclerosis context
 
 
  FEEDBACK, OPPORTUNITIES AND FUTURE DIRECTIONS  
 
Future Directions While the foregoing shortfalls originated from a case study in regional NSW subsequent research confirms that the knowledge gained from an evaluation of this study has a high degree of relevance across Australia. Shortly stated, this later research reaffirms that the level of satisfaction with the availability and quality of services to families living with multiple sclerosis reduces the further they live from metropolitan areas.
 
  ISOLATION FACTORS  
  These 'isolation factors' are compounded by disability level, extreme distances, poor or no public transport, minimal/inappropriate support, access to information and financial considerations. These 'isolation factors' exist, to varying degrees across Australia. In terms of numbers and geographic size they are most evident in NSW and Queensland. For example in NSW 51% of the MS population live in non-metropolitan areas - the figure is 53% in Queensland  - find out more  
  EXACERBATING FACTORS  
 
In July 2013 this situation was exacerbated when MS Australia unexpectedly announced that it had withdrawn from the provision of a wide range of holistically based MS services services in NSW, Victoria and the ACT - leaving it to pwMS, on an ad hoc basis, to access many highly MS specialised services from the general community. In many cases comparable services do not exist. This is especially so where MS populations and skilled service providers are spread over vast geographic areas.  
 
  The adoption of such a policy appears to conflict with the long accepted principle that MS best practice enables pwMS to access lifetime continuous care programs and services that include “integrated multidisciplinary professional teams, with expertise in MS management”.  
  FAILING TO LEARN FROM EARLIER EXPERIENCES  
  It is disturbing that these decisions were taken without apparent regard to the consequences of earlier experiences whereby access by pwMS to a “multidisciplinary professional team” was abandoned, in favor of pwMS sourcing this support from the general community. A total disaster. Service delivery satisfaction levels plummeted 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 MS community.  
  A VISION OF AN IMPROVED END STATE - Establishing a National Network of Geographically relevant MS hubs  
  Prompted by the foregoing developments, and by drawing upon the knowledge gained from the Pathways Review, in August 2013  Peter Sullivan put forward, as a discussion starter, the following vision of an improved end state. In doing this Peter (a member of the Pathways Review team) said "I have become increasingly perplexed by a lack of  strategic cohesion concerning the development of national infrastructures best suited to supporting patient-centred approaches to the care and support of Australians living with Multiple Sclerosis".
 
 
  “I believe that the overall aim is one of progressively establishing “Geographically relevant MS hubs” enhanced by
 Telemedicine links to more  centralised MS Centres of Excellence across Australia.

 In doing this there is a strong case for a reborn MS organisation to  progressively establish ‘partner in care’ relationships with the already established, geographically disbursed, branches of Medicare Local.
 There were originally 61 (now 31) of these branches across Australia.

 Medicare Local branches are directly funded by the Australian Government, are highly strategic and possibly self identify as the geographic ‘centre’ for each of the proposed hubs. It is anticipated that from 1 July 2015 these centres will be known as
Primary Health Organisations
 
 
  THE ROLE OF THE AUSTRALIAN GOVERNMENT  
  Perhaps the greatest need for a strategy along these lines is where a significant percentage and numbers of pwMS live outside metropolitan areas. While NSW and Queensland immediately spring to mind the principle has Australia wide implications. In relation to Medicare Local parallels can be drawn whereby, in August 2013, the Australian Government announced a $50M funding package for stroke care coordinators based at the nation’s now 31 Medicare Locals. A strong case can be made for similar support for families living with MS.

Paradoxically, the rapidly emerging understandings about the prevalence of vascular irregularities experienced by many people diagnosed with MS also strengthens the need to continue to build alliances
(individually or in collaboration) with those who specialise in this field of medicine. So that is the vision. We now have to see when and where leaders continue to emerge to facilitate the transition.
 
  THE SEVEN CRITICAL SHORTFALLS  
  Summarised below are details of the feedback, opportunities and possible futures about the seven critical shortfalls in gaining access to MS support and services as highlighted by the Pathways evaluation methodology. All shortfalls are underpinned by five universal guidelines relating to all aspects of MS Service Delivery. Subsequent developments indicate that these shortfalls, to varying degrees, have Australia wide relevance. While a number of these issues may reference regionally specific responses collectively they are believed to provide a useful national focus on the key shortfalls in accessing MS services and support.  
     
 
 

RESPONSES AND ONGOING DEVELOPMENTS - JULY 2014.
  SEVEN
CRITICAL SHORTFALLS IN ACCESSING REGIONAL MS SERVICES AND SUPPORT.
 All relating to an ongoing need for geographically relevant access to:
  DEFICIENCES - Priorities 1 and 2
 

1. A core multi disciplinary professional team, with expertise in MS management, accessible locally for assessment and treatment of MS. associated services to include:.

 

Accurate information and skilled advice about lifestyle issues and symptoms to help people make informed decisions. Such information to include advice regarding disorders sometimes associated with, or misdiagnosed as MS, i.e vascular irregularities, including CCSVI, lyme disease and bacterial infections such as Chlamydia pneumoniaecm (CPN) - see also point 7.

 

Counselling for individuals and families by trained counsellors familiar with MS/chronic illness, covering psychosocial and coping issues

2. Inpatient and outpatient rehabilitation services 

  Key Responses/Observations
 

The CEO of the Area Heath Service advised that "the NCAHS was about to embark on preparing a 5 year plan for rehabilitation services across the region that will encompass a comprehensive analysis of current and projected service needs, research into evidence based models of care and stakeholder consultation". He went on to say that "the MS Network will continue to be consulted in this process. Staff from planning and the newly operational rehab unit at Ballina have met with the MS Network to commence preliminary discussions"

 

These discussions and those with other agencies, focused upon a methodology whereby NCAHS would map regional rehabilitation approaches against recognised benchmarks as a basis for consultation with stakeholders. The absence of NHMRC endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis was identified as the major stumbling block. It was suggested that a "dot point" outcome focused check list could assist the mapping process. An evidence based checklist, in the form of MS Service Provision Guidelines, was subsequently included in this Road Map

 

What is MS Rehabilitation?

 

 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.: - find out more

 

Regional Progress Impeded

 

Progress in preparing a 5 year plan for rehabilitation services across the region was however impeded. It is understood that this was a result of resource shortages in the NCAHS  Towards the end of 2010 this issue was drawn to the attention of the Governing Council of the Northern NSW Local Health Network for consideration as part of the region's overall health care priorities.

 

Medicare Local  - Role of

 

This subject was revisited by Janelle Saffin MP in March 2013 at which time she referred the issue to Vahid Saberi the CEO of the North Coast division of Medicare Local based at Ballina - a new national, government funded organisation established in 2011 to spearhead an organised system for primary health care across the country through a network of 61 primary health care organisations. The vision of the North Coast division is "to ensure each person and their family in our community can partner with the care team they need to best look after their health - we aim to be recognised as an organisation that both supports the health workforce and delivers optimal health outcomes to the community".

 

Partners in Care

 

Also identified was a need to revisit an earlier (2005) proposal to establish a regional 'Partners in Care' relationship with MS Australia pertaining to the well being of families living with MS. Earlier momentum to establish such a relationship ground to a halt around 2006 primarily in consequence of St.Vincents impending withdrawal from the provision of public rehabilitation services.  

 

Such a relationship, built around a commitment to a strong consumer focus (particularly in regard to the planning of services), brings with it a commitment from MS Australia to work with regional health professional staff in areas such as MS specific education and support for best management of MS clients. This will be provided by the MS Australia's specialists via face-to-face education sessions, teleconferences and videoconferences - see discussion draft of the earlier proposed media release.

 

Establishing a Core Body of MS Expertise.

 

Further afield, one interesting suggestion related to the establishment of a regional MS rehabilitation focused hub to enable access by pwMS in associated remote, rural and regional localities. In the form a regional 'MS clinic', along the lines of the highly successful NSW Pain Clinic network, it would establish linkages with an MS team at a major hospital/research body and utilise and develop existing local health professionals. Such a clinic may not necessarily be 'permanent' in nature but could be convened as needed with geographic flexibility. One of the flow on benefits would be the progressive development of a core body of regional MS expertise.

 

Telemedicine Linkages to address demographic isolation

 

Also discussed was the potential to learn from the establishment of an MS related Telemedicine facility in Dubbo, NSW. The facility was established by Dr Michael Barnett and colleagues at the Brain and Mind Research Institute (BMRI) in association with the Royal Prince Alfred Hospital and Multiple Sclerosis Australia - NSW/ACT/VIC, with support from the School of Rural Health, University of Sydney  

 

Dr Barnett said ‘It is logistically impossible for many patients with MS to travel to our clinic on a regular basis, potentially compromising their medical care. We felt it was important to establish some way of providing timely and accessible care to patients with MS in rural areas - find out more

 

Regional Solutions to Regional Issues - Where to Start?

 

There is an over-riding need to highlight (in a range of constituencies) what constitutes "rehabilitation" in a patient-centred multiple sclerosis context. The research is very clear on this point as are the results of the 2003 to 2006 pilot project at St.Vincents. Having done that the question needs to be asked about the ways such needs are best addressed at a regional level. The Pathways review specifically identified a need for better regional support for the moderately/significantly disabled with significant mobility problems.  

 

More broadly, Australia wide research published in November 2012 confirmed that the level of satisfaction with the availability and quality of services reduced the further pwMS lived from metropolitan areas, such that people in the remote areas were least satisfied, followed by rural, regional and metropolitan. 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

 
 
DEFICIENCES - Priority 3
 

3. Regular Respite facilities in an appropriate setting .

  Key Responses/Observations
 

While this deficiency specifically relates to the referral pathways recommended for pwMS with significant levels of disability principles arising therefrom have broader application. It also needs to be viewed in the context of the quite reasonable expectations of many carers in the region who were fortunate enough to gain first hand knowledge of 'flow on' respite benefits associated with MS rehabilitation programs provided during the period 2002 to 2006. These benefits were dramatically curtailed when St.Vincent's withdrew from the public rehabilitation arena.

 

When discussing the issue of respite, Carers NSW said (2006) "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" - more about comments by Carers NSW..

 

Drawing distinctions between respite as a process as compared to a specific program or service opens the door for broader discussions. In this context  respite could be better defined as "an ongoing process the outcomes of which enhance the well being and quality of life perceptions of families caring for people with multiple sclerosis and those for whom they care". All too often it is the inability of people living with MS to access lifetime continuous care programs and services (that include access to multidisciplinary professional teams, with expertise in MS management) that significantly compounds the workloads and QoL perceptions of families living with MS.

 

There is a strong case to revisit the respective and interconnected roles of rehabilitation and respite as key components in the process of ensuring that pwMS and their carers can access lifetime continuous care. As illustrated by Carers NSW terminology that is not outcome focused can be open to a broad range of interpretations. For this reason the term 'rehabilitation' when applied to pwMS may also warrant better understanding.

 
 
  DEFICIENCES - Priority 4 
  4. Education and training programs for staff and carers. Staff to be trained in the physical, psychological and psychosocial problems that occur in the later stages of MS
  Key Responses/Observations
 

Prior to 2006 MS Australia had 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 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, curtailed plans to formalise arrangements of this type by way of a formal 'Partners in Care' relationship pertaining to the well being of families living with MS in the Northern Rivers region of NSW. While it is understood that scope exist to rebuild this relationship questions first need to be answered about the subsequent inability of pwMS to actually gain access to public MS rehabilitation programs in ways that gave rise to the 'Partners in Care' concept.

 
DEFICIENCES - Priority 5
 

5. Efficient community transport for significantly disabled pwMS

  Key Responses/Observations

This issue is being well progressed through a task force established by Northern Rivers Community Transport in association with the  Northern Rivers Social Development Council and Transport NSW.  - An information paper reflecting the issues involved was also provided to a NSW Parliamentary Select Committee enquiring into the NSW taxi industry. An associated background paper illustrates, inter alia, a significant lack of consistency between Australian States especially those whose only form of transport in the community is via wheelchair accessible vehicles - a case study. Feedback has been received from other rural areas of NSW with identical problems.

 
  SUPPLEMENTARY ACCESS ISSUES
  DEFICIENCES - Priority 6
  6. Support for Carers
  Key Responses/Observations
 

The Pathways Report (page 9) observed "While the 43 benchmarks appear to cover all aspects of service delivery to people with MS, the Planning Group has noted that they do not deal adequately with the needs of carers. The Group will consider these needs through a supplementary paper as its next advocacy priority"

 

The team subsequently identified a need to critically review the effectiveness of services, provided to older pwMS with significant levels of disability. Inflexibilities frequently associated with the division of responsibilities between Federal and State Governments was identified as a major issue leaving many people with inadequate home care. This has a dramatic impact on pressures placed on carers - read more

 

There is a strong case to revisit the respective and interconnected roles of rehabilitation and respite as key components in the process of ensuring that pwMS and their carers can access lifetime continuous care. All too often it is the inability of people living with MS to access lifetime continuous care programs and services (that include access to multidisciplinary professional teams, with expertise in MS management) that significantly compounds the workloads and QoL perceptions of their carers - see earlier

 
DEFICIENCES - MISDIAGNOSIS ISSUES - Priority 7
  7. More comprehensive screening is needed to better detect disorders sometimes associated with, or misdiagnosed as MS, i.e vascular irregularities, lyme disease and bacterial infections such as Chlamydia pneumoniaecm (CPN). Originally categorised as Priority 7 it is now regarded as amongst the Priority 1 issues. Extensive feedback has been received on a range of associated topics - some examples follow:
Key Responses/Observations
 

A study published on 10 May 2012 in Neurology found that it is relatively common for doctors to diagnose someone with multiple sclerosis when the patient doesn't have the disease meaning that patients are getting expensive and potentially harmful treatments they didn't need, but they were also not getting the appropriate treatment for the diseases they may have had - find out more

 

On 17 July 2012 the Canadian press reported on a study involving 2,656 patients with MS  that found that exposure to a group of drugs known as the beta interferons was not strongly associated with a reduction in progression of long-term disability in people with multiple sclerosis. Researchers said "Our main finding suggests the drugs aren't preventing the progression of disability" . The researchers warn that the study's results weren't meant to suggest that MS patients stop taking the drugs as the medications are still effective at reducing relapse rates - find out more

 

The January 2010 edition of the most highly read peer reviewed neurology journal, Neurology, reported on a Canadian study on 8,983 pwMS, that concluded that vascular  comorbidity, whether present at MS symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in MS . The researchers also observed that "treatment of vascular comorbidities may represent an avenue for treating MS" - find out more

 

Towards the end of 2009 new knowledge about possible associations between vascular irregularities and many of the most common MS symptoms began to emerge - known as CCSVI (Chronic Cerebro Spinal Vascular Insufficiency)  -  find out more. 

 

Chlamydia pneumoniae is recognized as playing at least some causative role in reactive arthritis and coronary artery disease--medical conditions which, like MS, are characterized by ongoing inflammation. Convincing data relating infection with a specific organism to Multiple sclerosis was reported in 1999 and is borne out by subsequent events - find out more.

 

Lyme disease can cause delayed neurologic symptoms similar to those seen in MS, such as weakness, blurred vision caused by optic neuritis, dysesthesias (sensations of itching, burning, stabbing pain, or “pins and needles”), confusion and cognitive dysfunction, and fatigue. Lyme disease symptoms may also have a relapsing-remitting course. There is also evidence about inter-relationships between Lyme Disease and Chlamydia pneumonia - find out more.

 

These developments highlight a need to review an existing referral pathway relating to MS diagnosis. Currently expressed as "Diagnosis should be made by a consultant neurologist, with an interest in MS". A more relevant expression could, as a minimum, be "Diagnosis should be made by a consultant neurologist, with an interest in MS, having regard to the outcomes of screening for conditions of the aforementioned types"

 
   
 
 
     

 

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 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 - .access these guidelines
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 across Australia. 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" 
About Brain Plasticity and MS
Professor Kraft - MD, MS, principal investigator of the Multiple Sclerosis Rehabilitation Research and Training Center at the University of Washington (2006). As we learn more about the inner workings of the thinking processes of people with MS using qualitative interview techniques, and more about compensatory brain function through functional magnetic resonance imaging (fMRI) studies, we are becoming aware of the intense effort put forth by people with MS to function as well as they do and the role of brain plasticity in allowing this to occur. Previously discrete regions of brain activity become spatially arranged more diffusely – a necessity, as MS lesions destroy old neuronal pathways. This may account for the difficulty in multi-tasking often seen early in the disease process. Consequently, we are now suspicious that isolated system testing – whether in the motor or cognitive sphere – may not give a completely accurate assessment of function in the real world in which some degree of multitasking is a prerequisite for success. I believe that we are scratching the surface in our understanding of this at present - rehabilitation is what people with MS want" - read more about Professor Kraft's observations.    Learn more about developments in the field of Brain Plasticity.
   

 


 

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