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

A Voice for People Affected by MS

 Multiple Sclerosis Standards of Care                 
''Access to Lifetime Continuous Care''                       

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The 43 Referral Pathways News Headlines What is Multiple Sclerosis? Quick Reference Guide
Strategy MS Australia, in a 2008 submission to the Australian Government, described support for pwMS as "the need for lifetime continuous care programs and services"  - a process more generally described as "MS rehabilitation". More broadly, MS rehabilitation is 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 multiple sclerosis. How this is achieved in the context of national health systems varies between countries. For example, while access to Health Care as between the UK (universal health care) and the USA (insurance based care) appear to be at polar extremes, both systems are, of necessity, underpinned by formally developed patient access entitlement guidelines - thereby providing degrees of certainty for those in need of care. In Australia and in the case of multiple sclerosis, no such nationally endorsed benchmarks exist. This is unfortunate. The absence of such guidelines makes it extremely difficult to prioritise and evaluate the relevance and effectiveness of both service delivery and research funding.  The Australian MS community deserve the comfort of knowing that such guidelines are in place.
In 2014 Australia's National Disability Insurance Agency (NDIA) also highlighted the importance of benchmarks when it identified its number 1 goal as "People with disability are in control and have choices, based on the United Nations Convention on the Rights of Persons with Disabilities". Ratified by the Australian Parliament in 2008 this convention has far reaching implications for all - especially those who may become involved with the well being of those with disabilities - more about this convention.
As early as 2003 the then UK National clinical guidelines for diagnosis and management in Multiple Sclerosis included "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". The importance of developing a 'seamless' service from a client perspective was also emphasised.
The guidelines went on to say "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". All of these issues, and more, have been strongly re-enforced, and expanded upon, in the 2014 NICE update.
The latest UK guidelines became available in October 2014
The media release associated with the publication of these updated guidelines provides much food for thought. Comments include "currently some people are receiving excellent care and support but others around the country are not. The care someone receives should not depend on where they live"
"We want to ensure that throughout the country people with this distressing and disabling disease have prompt access to specialists who understand their needs and can help improve their condition" and "recommends that every person with MS has a comprehensive review of all aspects of their care at least once a year and that multidisciplinary teams should oversee the care they receive". About MS isolation factors in Australia
The importance of "offering people with MS an appropriate single point of contact to speak about their care, concerns and different treatment options" is highlighted as well as "encouraging people with MS to exercise and offering supervised exercise programmes for those who struggle with mobility and fatigue".
No comparable safeguards exist in Australia - too often decisions are based upon a restricted view of what constitutes MS rehabilitation and the discretion and priorities of others - rather than an individual's needs and entitlements. For example, an inability to gain ongoing access to multi-disciplined inpatient and outpatient MS rehabilitation has been identified as a key issue. The impact of these imbalances is significant for those with moderate to severe levels of disability especially those residing in non-metropolitan regions of Australia. The observation "In many instances it is not the MS itself that is restricting a person’s life, but the expectations and actions of others" frequently appears in the literature.
While the progressive introduction of the National Disability Insurance Scheme seeks (in principle) to redress imbalances of this type this scheme, paradoxically, does not extend to primary or secondary health care. Moreover the NDIS does not extend to those already aged above 64 who must rely on a hopelessly inadequate (for those with significant/severe chronic disabilities), albeit revamped, aged care system..
In November 2011 Australia's peak health advisory body, the National Health and Medical Research Council (NHMRC) re-affirmed earlier advice that "Australia has no NHMRC endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis nor is it aware of any plans for their development"
It went on to say "starting points' to initiate the development of such guidelines could include the State Chief Health Officers, the CEO of NHMRC or Australia's Chief Medical Officer and that funding is always an issue, so if there is a funding source, that makes it easier"

It is 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  - especially in terms of ensuring access to appropriate and ongoing multi-disciplined rehabilitation.

There needs to be a nationally endorsed process that enables pwMS, as a matter of right, to access internationally 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. The development and maintenance of such a process to be consistent with the key principles of patient-centred care."
On 10 October 2014, Debra Cerasa, CEO MS Australia advised "A plan" for this work has been on the MSA agenda for some time".
MSA, in conjunction with the State MS Societies National Services Leadership Group (NSLG), is currently considering how we can facilitate an appropriate review of the NICE guidelines that will be beneficial across all stakeholders, given that we have no allocated resources for such a development. I also recognise that the MS Nurses Association, the Australian Neurologists with special interest in MS,  MS clinics in hospitals and other groups also have a keen interest in this discussion. By 2016 nothing whatsoever had transpired apart from the progressive introduction of NDIS and significant developments regarding the impact of cardiovascular disorders on ms progression.
In 2003 Multiple Sclerosis Australia highlighted developments in the UK that identified guidelines for the provision of services to meet the varying needs of people with MS (pwMS) across the continuum of the disease - expressed by way of a series of  'referral pathways'.  It reported that these guidelines had been used as an informal reference point in Australia and, while not intended to relate to clinical practice per se, were very useful in highlighting shortfalls in gaining timely and appropriate access to such practice.

he relevance of these 'referral pathways' in an Australian environment was subsequently road tested, evaluated and endorsed in what became known as the Pathways Project. Of significance are the triennial comparisons highlighting rehabilitation access trends benchmarked against these pathways.

This project was conducted over an extended period (2002 - 2011) in a large Australian regional area with an intention that the outcomes serve as a catalyst in advocating to NHMRC for the development and
formal recognition of Australian standards of MS care - supported by government polices, programs and enabling infrastructure including (where appropriate) ongoing access to multi disciplined MS residential rehabilitation across the public hospital system. The potential for the establishment of Telemedicine links to enhance this process was noted.
The Pathways Team noted that, in terms of content, the standards as originally expressed in 2003 predated the knowledge regarding the failure of immunotherapy drugs to delay MS progression and also significantly under-recognised the impact of neurovascular/cardiovascular irregularities in MS (since updated).

However in terms of process the Pathways Project illustrated that the use of the guidelines as benchmarks to underpin evaluations of access to services by pwMS:
* 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 Pathways Team also provided an abridged "checklist" to enable service providers to "self evaluate" (across wide ranging disciplines) the relevance and effectiveness of approaches to delivering services to people with MS - access this checklist. The evaluation stage of the process identified seven key gaps in regional service delivery and three primary areas of concern - all of which appear to have broad relevance.  

In December 2012 the issue of ongoing access to rehabilitation was further highlighted by Dr Michael Barnett when he said, in relation to the role of Telemedicine, ‘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"/span> - find out more..

The guidelines built around 36 "referral pathways" were identified in the publication Developing MS Healthcare Standards - Evidence-based recommendations for Service Providers" and are now widely referenced across the globe. They do not relate to clinical clinical practice per se but are highly relevant in highlighting shortfalls in gaining timely and appropriate access to such practice. They also became a precursor to the National Collaborative Centre for Chronic Conditions at the Royal College of Physicians developing National clinical guidelines for diagnosis and management in Multiple Sclerosis - enabling, inter alia, a national audit of services for people with multiple sclerosis.
Benchmarks This audit is regularly conducted in England and Wales, funded by the Royal College of Physicians and the Multiple Sclerosis Trust. It is a clinically-led audit of the organisation, resourcing and performance of NHS funded programs with the primary goal of improving care for all people with multiple sclerosis. An ongoing process of continual improvement identifies, prioritises and monitors areas in need of improvement - check out the Executive Summary to the 2011 audit - well worth a read. There is no equivalent program in Australia.
The Underpinning  'Universal" 43 Referral  Pathways - Access Guidelines Relating to MS Services and Support
These 'access related' guidelines identify four 'phases' of MS care needs with each phase reflecting a number of key issues and approaches to service provision. These phases do not reflect an individual's disease progression. Rather, they provide a pragmatic framework for discussion and a structure that enables the systematic identification of a wide-ranging list of service needs. The timing of support provided is therefore of major importance in delivering appropriate care. More broadly, the individual needs of each person with MS must be considered, as each person's experience is unique.
The following framework depicts those needs expressed by way of the 36 MS referral pathways. In some cases, examples of recommended services are also referenced. Also identified are a further 7 recommendations, applicable to all 36 referral pathways, that can significantly influence Quality of Life perceptions. These further recommendations are drawn from a companion study titled 'The Charter for MS Services: the voice of people affected by MS - the Guiding Principles for the Care and Support for People affected by MS' .  
Benchmarks/Guidelines for Highlighting Shortfalls in Accessing MS Services and Support
The relevance of these guidelines in identifying shortfalls in access to essential MS services and support in Australian was demonstrated in the Pathways Project.  Using the following 43 checkpoints as benchmarks the Pathways approach highlights and prioritises services most in need of review - more about this approach
DIAGNOSTIC PHASE: This is a very important time for newly diagnosed people with MS which, if not managed properly, may have negative long term effects for the individual and their family

KEY ISSUES Certain, clear diagnosis: Appropriate support at the time of diagnosis. Access to information: Continuing education.
1.  Diagnosis should be made by a consultant neurologist, with interest in MS. Special regard to be paid to the impact of potential comorbidities including cardiovascular irregularities in respect of which the involvement of vascular specialists is also necessary,  This is a very important time for newly diagnosed people with MS which, if not managed properly, may have negative long term effects for the individual and their family. Misdiagnoses/Under diagnosis at this point not only means patients may receive expensive and potentially harmful treatments they do not need, but they may also not get the appropriate treatment for the diseases they may have.
2.  Referral time to see appropriate specialists should be within 4 weeks  
3.  Information about MS should be presented by health professionals - example of an overview of MS.
4. Written information packs and MS Society contact details should be provided at time of diagnosis 
5.  Staff with specialist knowledge of MS and counselling experience should be available in the weeks following diagnosis for support.
6.  Individuals and family should have ready access to a specialist nurse or support worker when further information is required
7. Regular information sessions should be established for/individuals/ families/ carers
 MINIMAL/SELF MANAGING  IMPAIRMENT PHASE: 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.

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
8.  Following diagnosis, people should be put in contact with a specialist multi-disciplinary team in their area. At minimum the team should include a neurologist, support worker and specialist nurse. Referral to Neuro physiotherapist, occupational therapist, speech therapist, clinical psychologist, and dietician should also be available - regional issues.
9.  Accurate information and skilled advice about lifestyle issues and symptoms (including diet, exercise, family planning, sexual function, tone management, fatigue management, posture, cognitive strategies, continence) should be available to help people make informed decisions some further examples of frequent issues and symptoms.
10.  Individuals and employers should have up to date access to advice on work related issues & access to specialist employment assessments - example of employment related support services.
11. Counselling for individuals and families should be available and provided by trained counsellors familiar with MS / chronic illness
12. Support groups should be set up and facilitated by MS organisations  - examples
13.  Adequate and appropriate home care support should be available as needed - relevant support should be given to children caring for their parent with MS, or just coping with MS generally -  examples 
14.  Drug treatments should be discussed with individuals with MS -  example
15.  Clearly written information about MS symptoms and their management should be widely available - example
16. GP’s should know the facts about MS and have ready access to MS information guidelines
MODERATE DISABILITY PHASE:  The issues raised in the minimum phase continue and may be an even greater challenge with increasingly complex disability. Symptoms may be many, varied and interrelated. Management of these symptoms can therefore be challenging and require an integrated multi-disciplinary approach to provide focused neuro-rehabilitation services.

KEY ISSUES:  Responsiveness of services, Access and location, Expertise, Communication and co-ordination, Self Management
17.  A Specialist diagnostic clinic for MS, with well defined links to MS Society, should be established. - a significant problem in rural and regional Australia - example
18.  Should be clear links between local health and social services and neurology services to ensure responsive, timely, seamless service delivery.  
19.  Services and equipment provision should be community based - examples
20.  Inpatient and outpatient rehabilitation facilities are critical and should be widely available -
21.  A core multidisciplinary professional team, with expertise in MS management, should be accessible locally for assessment and treatment of MS a significant problem in rural and regional Australia -  example
22.  Education and training programs should be developed for qualified and unqualified staff and carers. Contact your regional MS Community Support nurse.
23.  Service provision should be coordinated over time, and a comprehensive care plan should be available and updated frequently -  a significant problem in rural and regional Australia -  example
24.  Self management should be encouraged at all times - example
25.  Clear guidance about legal entitlements should be available.  
SIGNIFICANT TO SEVERE DISABILITY PHASE:  At this stage there are often a wide range of complex interacting physical, psychosocial and cognitive problems. There may be heavy reliance on others to maintain quality of life. 

KEY ISSUES:   Access to information, Expertise, Communication and coordination, Adequate community care services, Community mobility, Provision of respite care, Appropriate long term facilities, including palliative care.
26.  Easily accessible, timely, accurate, up to date and understandable resource information should be available to all stakeholders involved in care, via multiple mediums.  
27.  Staff should be trained in the physical, psychological and psychosocial problems that occur in the later stage  
28.  Specialist equipment and environmental aids should be available especially for pressure care and posture - examples
29.  Individuals should have a coordinated and individual management plan at all stages of the care process. – see also 41  
30.  Follow up services in the community should be available to carry out care recommendations in a timely manner, and flexible enough to meet changing needs - examples
31.  Professional assessment and support services should be available for carers and families and cover psychosocial and coping issues - examples
32.  Provision of efficient community transport should be available for significantly/severely disabled people - examples
33.  Regular respite facilities in an appropriate setting should be available - examples
34.  Appropriate facilities should be available for long term care  
35.  Fulltime care within a person’s home should be available as an option for long term care - example
36.  Palliative care facilities should be available  
EMPOWERMENT INDICATORS - ENHANCING QUALITY OF LIFE PERCEPTIONS: The World Health Organisation (WHO) defines Quality of Life as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns". Frustrations flowing from imbalances in matching the needs, issues and expectations of people with MS with relevant and accessible levels of service delivery negatively impact on QoL perceptions and in a less than optimum ability to 'self manage' the progressive and cumulative nature of MS related issues. There can also be a negative impact for service providers in terms of job satisfaction in the delivery of services

KEY ISSUES:  Access to information, Access to services, Patient-centred involvement and influence in decision making, Holistic approach to service provision, Recognition of personal dignity, Maximising personal potential, Meeting agreed standards.
37. The involvement of service users and carers in the planning and provision of services is a priority within the health and social care fields. Their involvement contributes to the ability of providers to deliver services that are effective and appropriate. It can foster a sense of involvement and clearer expectations of the rights and responsibilities of all concerned – see also 8  
38. Good quality service provision requires a full appreciation of each individual’s nursing, personal, social and spiritual care needs and expectations. The aim should be to maintain independence as far as possible and ensure that the best quality of life is achieved – see also 23
39. Services need to consider ways of reaching those whose voices are not being heard. They must also work to avoid such involvement opportunities turning into perceived obligations, particularly if they come to be seen as a condition of receipt of services – see also 20  
40. People affected by MS must be in a position to participate fully and make decisions about their support and care, with information and advice to help them make such decisions. Options for self referral to MS related rehabilitation supported by scheduled recalls for those with Moderate Disabilities and beyond are essential. – see also 9, 20,24,  
41. Services should encourage people affected by MS to think about and define what they need to continue to achieve their goals and aspirations. Services need to be flexible enough to adjust to their changing needs over time – see also 29
42. Services should be sensitive and responsive to unique and individual needs and opinions of people with MS encompassing the principles of privacy and dignity.
43. There needs to be clear standards for measuring success. Programs need to be developed to provide advice and support for providers wishing to improve their services. Specific standards can only 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 – Contact your regional MS Community Support nurse - see also 21.



References and Acknowledgements



Multiple Sclerosis Needs, Issues and Expectations
Developed (2008) by the 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.
Rehabilitation Recommendations for Persons with Multiple Sclerosis
In 2004, 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
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.
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 jurisdiction
  Facts Sheet RM1872MS
Road Map Reference



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