7/31/2019 N Caeyers and S Smith

1/8

Patient-centred care and self-management for

people with MSDs: the importance of physical

and mental health

Nele Caeyers, ReumaNet, EULAR-PARE

Seoirse Smith, Ankylosing SpondylitisInternational Federation

7/31/2019 N Caeyers and S Smith

2/8

Patient

organisations

Scientificassociations

Health

Professionals

associations

Foundation: 1947

All aspects of RMDs(rheumatic and musculoskeletal diseases)

7/31/2019 N Caeyers and S Smith

3/8

ReumaNet

Platform of patient organisations

Collaboration with different stakeholders Scientific

Health professionals

Industry

Politics

7/31/2019 N Caeyers and S Smith

4/8

Innovative projects

Lets Work Together: Allen Actief, ook met

reuma

Disabillity Case Managers

Winning Ways to work: how to get, keep or re-

enter a job

7/31/2019 N Caeyers and S Smith

5/8

Introduction to ASIF

7/31/2019 N Caeyers and S Smith

6/8

ASIF Introduction

AS is a long-term, painful, progressive, inflammatory rheumatic disease that mainly affects

the spine and sacroiliac joints but can also affect other joints.

AS affects at least 36 million people worldwide and is known as Morbus Bechterew in

some European countries

There are now AS organisations in more than 30 countries that are connected through

ASIF

Since its foundation in the mid 1980s ASIF has existed to support AS organisations around

the world through

sharing information, experiences , knowledge

giving an international voice to patients with Ankylosing Spondylitis

promoting international cooperation on mutually beneficial projects

developing support groups where none currently exist

As national organisations we look to empower people living with AS;

By informing them and their medical team on their condition and its management

By removing barriers & obstacles associated with living with this chronic illness

including social, regulatory, financial and employment barriers where possible

7/31/2019 N Caeyers and S Smith

7/8

Objectives

Discuss your advocacy experiences

Share good practices successes

Discuss solutions to the challenges we face

Create a common understanding of key needs forpeople with MSDs which should be patient-centredcare policies

Identify the +/- of self-management policies for peoplewith MSDs

Identify core asks (needs for people with MSDs) whichneed to be highlighted to policymakers

Please identify yourself when you speak!

7/31/2019 N Caeyers and S Smith

8/8

Questions to consider

What is the responsibility of people with MSDs inplanning and managing treatment plans?

How can people with MSDs contribute to advocacy onnational planning on MSDs and outreach to national

ministries of health? What can people with MSDs do to support efforts on

making workability a clinical outcome and part ofHTAs?

What can people with MSDs do to support patientempowerment and self-management policies?

What are the barriers to this approach? What are theobstacles people with MSDs have encountered?