Importance of Self Reliance

An increasing number of population studies highlight concerns by many  living with MS that while they value and desire self-reliance in managing their own care they lack adequate advice and information and want to enhance this knowledge. A situation that researchers identify as giving rise to impaired quality of life perceptions, particularly anxiety, depression, self worth, independent living and relationships. Details of these studies are at:.

http://www.msnetwork.org/ccsviqol.htm

The Big Picture

The 2020 to 2022 theme for World MS Day reinforces the importance of better connecting people affected by MS to MS specific research, The role of MS specific, readily accessible "connection tools" is referenced as potentially enhancing this aim.  Flexibility by individuals and organisations in achieving this aim is encouraged.

http://msnetwork.org/advocacy/worldmsday.htm

Scope of Information Entitlements 

Decisions regarding Multiple Sclerosis medical interventions are matters as between the individual and their medical advisers supported by comprehensive up to date information. This information to include risks, side effects, permanency of outcome, and other aspects of the nature and quality of treatment, alternative treatment options and the consequences of not having treatment. Information Integrity is critical to Informed patient consent. Details of related legal and ethical imperatives are at: (Australian examples)

http://www.msnetwork.org/evidence/consumer-protection.html

Beyond the Autoimmune Hypothesis

There is a need to expand the scope of available information to encompass multi-discipilinary perspectives especially regarding what is being learnt "beyond the autoimmune hypothesis". Some associated background information is at:

http://www.msnetwork.org/bookmarks/chain-reaction.htm

Where to begin 

There are increasing understandings about MS as neurovascular disorder - giving rise to a need for broader understandings about the range of factors likely influencing its prevalence and progression. In this regard the Multiple Sclerosis Network of Care prioritises the following issues as important learning stages for those living with MS:

0. Cardiovascular Disorders are more prevalent in MS
1. Hypoxia - Common denominator across many MS disabilities 
2. Engendering "Healthy" Quality of Life Perceptions
3. Information Integrity essential for properly "informed consent"
4. Factors Influencing MS Prevalence & Disability Progression
5. Attention to slowed Blood flow - Many MS Disabilites benefit
6. Poor Nutrition & Slowed blood flow as MS triggers
7. Sunshine, Latitude, UV exposure, Nitric Oxide, Vitamin D
8. Inflammation, Fibrinogen, Myelin damage
9. Brain, Lymphatic and Immune Dysfunctions

For more about each of these learning stages see
http://www.msnetwork.org/evidence/beyond-autoimmune-hypothesis.htm

Impact of Misinformation on Informed Consent

Misinformation (in its many forms) can result in potentially harmful treatments that are not needed and failure to get appropriate treatment for conditions that individuals may actually have.

There are concerns about the extent to which information shortalls have implications regarding the ability of many to provide properly informed consent to MS medical interventions . See also:

http://www.msnetwork.org/advocacy/worldmsday.htm

Some Examples

It is long established that the impact of an MS misdiagnosis (or under-diagnosis) can have long term negative effects for the individual and their family. By way of example a potential  "under diagnosis" (from a patients perspective) can involve a failure to identify the extent to which cardiovascular disorders may also be impacting on MS associated disabilities. Details are at:

http://www.msnetwork.org/caution.htm

A Case in Point - Employment issues and Multiple Sclerosis

Those with MS tend to report higher levels of work difficulties and negative outcomes, such as voluntary and involuntary work termination and reduced work participation.

More than 80% of those diagnosed with MS are identified as having CCSVI related slowed blood flow disorders. Vascular Specialists provide  guidance in managing such conditions of which angioplasty/venoplasty can be one option.  

The successful restoration of normal blood flow frequently gives rise to dramatic and enduring improvements to many of the most common disabilities experienced by those with MS along with significantly enhanced life journey expectations including workforce capabilities..

In one long term population study enhanced workforce participation is reported by 98.9% of those with relapsing remitting MS, 37.5% of those with progressive MS, with significant variations for those with secondary progressive MS. Researchers said "the sooner treated the better".

.http://www.msnetwork.org/evidence/employment-issues.html

Impact on MS related Depression

The association with enhanced workforce capability is also of significance in the management of depression in MS. Continued and long-term employment by those with MS is associated with higher quality of life, less welfare dependence, and better clinical and disease management. In this regard depression in MS is often reported as a consequence (rather than a cause) of unemployment. Some depression related references:

http://www.msnetwork.org/bookmarks/depression-mood.htm

Important Stepping Stones

Such improvements provide important patient-centred stepping stones when answering the key question asked by HealthPact, Australia and New Zealand's peak Health Policy Advisory Committee on Technology "does Percutaneous Venoplasty make a difference in relieving the symptoms of multiple sclerosis by improving cerebrospinal venous drainage?"

http://www.msnetwork.org/ccsvi-reference-group.htm#employment

In Summary

There is an important need (as a right) to better address the information needs of those with MS. In some jurisdictions (including Australia) this need is accentuated by the absence of nationally endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis. See also

http://www.msnetwork.org/roadmap/issues.htm#provision

Reforms are Needed

Better targeted information about the impact of what is being learnt warrants highlighting by Medical Practitioners and MS Advocates along with strengthened guidance by Health Care regulatory and/or advisory bodies so as to better protect the most vulnerable. 

Fundamental to such reforms is that those with MS trust, respect and have leadership participation in the reform process.

More about these issues is at http://www.msnetwork.org/evidence/index.htm#6

 Peter Sullivan, on behalf of
Multiple Sclerosis Network of Care, Australia
http://www.msnetwork.org