The MSIF movement’s call to action on quality of life with MS

In 2005, we published a set of principles – a kind of “gold standard” –  setting out what any person with MS should expect in order for them to have a good quality of life.

Many of the challenges outlined in those principles remain relevant today. However, while advances have been made in many areas, inequality is still a stark reality both between and within countries, especially in relation to access to treatments.

In 2016, we reviewed the principles and carried out an extensive consultation with people from over 30 countries, learning more about what influences quality of life for people with MS, their caregivers, family members and friends closest to them.

From this consultation, we have produced a refreshed set of principles identifying the main areas in which every bit of progress can make a real difference to individuals. It recognises that quality of life is highly personal and changeable, with many interdependencies, and that it is for individuals to determine what matters to them. The principles are reinforced by many global treaties and consensus frameworks shared by other movements, and are intended to inspire and challenge us all.

What influences quality of life?

Many factors can influence a person’s quality of life, both inside and outside their direct control. These factors vary from person to person, from place to place and change over time. Multiple sclerosis (MS) can have an impact on these factors at any time.

Seven principles to improve quality of life

The seven principles below are based on the insights and experience of people affected by MS and agreed by the MSIF movement. There is no priority amongst the principles – it is for individuals and organisations to decide what is most important to them at any time. No country can claim to have achieved them all. They are our call to action for continuous improvement in every country.

Read more about these seven principles here: Seven principles to improve quality of life.

We invite everyone in the MS movement to use the principles in their own way:

  • as individuals: to think about our own quality of life and what we can do to enhance it, whether we have MS ourselves or know someone who does
  • as MS organisations: in shaping and evaluating our strategies, programmes, advocacy and research

and we call on others to join us….

  • Healthcare professionals and providers of services to people affected by MS: to understand how what they do and how they do it affects quality of life
  • Researchers and product developers: to shape their investigations and the way they carry them out
  • Governments and health authorities: to help shape laws, policies and actions.

 

“This valuable tool builds on the WHO’s quality of life framework and reflects real life experience from those affected by MS around the world.  It illustrates the interplay between physical and mental health, social and other impacts of living with a variable, life-long condition. I encourage everyone –  people affected by MS, MS organisations, health care providers and government agencies – to use this resource to understand and take action to improve quality of life with MS.”

Dr Shekhar Saxena, Director, Department of Mental Health and Substance Abuse, World Health Organization

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