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					The role of the expert patient in the
  management of musculoskeletal
 disorders: an exemplar for chronic

                      Neil Betteridge
 Vice President of People with Arthritis and Rheumatism in
                   Europe (PARE), EULAR

        Belgian Presidency of the European Council
                  Ministerial Conference
 ‘Innovative approaches for chronic illness in Public Health
                 and Healthcare systems’
                     20 October 2010
            is an umbrella and partnership organisation

 Albania       Armenia         Austria        Belarus           Belgium         Bosnia &

Bulgaria                       Cyprus                          Denmark
                Croatia                    Czech Republic                         Estonia

 Finland        France         Georgia       Germany            Greece           Hungary

Iceland          Ireland        Israel         Italy             Latvia          Lebanon

Lithuania    Macedonia FYR    Moldova       Netherlands         Norway           Poland

Portugal       Romania        Russian        Serbia &       Slovak Republic     Slovenia
                             Federation     Montenegro

 Spain          Sweden       Switzerland      Turkey            Ukraine       United Kingdom

Aims of People with Arthritis and
Rheumatism in Europe (PARE)
• Develop strong networks of effective, user led
  organisations of people with arthritis and other
  musculoskeletal conditions
• Ensure the voice of people with MSKs is heard and
  acted upon by decision makers at a European level
• Create powerful alliances and collaborations inside and
  outside EULAR, which make a difference to the lives of
  people with MSks
• Contribute to an epidemiological database of MSK
  prevalence, impact, treatment and cost effectiveness
  data that can be used for advocacy and research at all
  levels in Euro
 Doctor / patient partnership
To be a success, there needs to be a partnership between
  clinicians and patient characterised by:

   – Open, honest communication

   – The timely provision of good quality information that
     enables the patient to make informed decisions with
     the support of clinicians

   – Time taken to ensure the patient not only has the
     information but also understands it, including their
Working Wonders launch -
 in Brussels on Oct 13

      Patient empowerment
Patient empowerment: helps create & support strong
  partnerships: it can benefit the patient and the healthcare
  system, in terms of efficacy and cost savings

• We are with health professionals <1% of our time p.a.

• We live with our condition 24/7

• We – all of us - must prioritise self management

• Functionality and self-sufficiency are the ultimate goals

      Control = confidence = independence
           UK case study
Policy context:
  Shift to primary care

  Focus on public health / prevention

  Patient led health service

  Personalisation (inc. personal
       Self-management: right
        information, right time
Arthritis Care’s helplines take calls on any aspect of living
  with arthritis. From our 2009 data: 12,514 contacts:
Use of ‘patient’ information: - 2009 Arthritis Care
  information service survey – below is the % of people
  who took action as result of receiving information &
  support from Arthritis Care:

• 26% considered attending self-management courses

• 36% changed their diet
How Arthritis Care can help (5)

 • 41% tried a new exercise

 • 43% looked at different ways of managing their arthritis

 • 51% made changes to their lifestyle eg smoking, alcohol

 Being informed about risks & benefits of treatment
   empowers people to take an active role in their
   disease management.
Practical benefits to healthcare
 From a recent survey of people who use
   Arthritis Care’s services:

 • ‘It is always good to research your condition
   because there are ways to make changes to
   lifestyle that help. If you understand your
   condition better, it’s a positive thing! Doctors
   never have the time to tell you everything.’

 • ‘Information was very readable; your
   organisation is very approachable and
   client/patient orientated. You add to what the
   medics provide and it helps in not feeling you’re
   alone in fighting this rotten thing, emphasising
   being positive.’
  Informed Decision Making

• ‘The information provided has helped me a great deal;
  it’s very comprehensive and detailed and enables me to
  make the correct decisions regarding pain relief etc.’

• ‘To learn as much as possible about your disease makes
  it easier to discuss with your GP or consultant.’
Dept. of Health Information
 Perhaps our time has come

• ‘Nothing about us, without us’
  (adopted by Arthritis Care as a ‘first principle’ since 2004)

• ‘No decision about me, without me’
     (UK government White Paper on Health, July 2010)
     From ‘expert patient’ to
      ‘responsible patient’

• Responsibility for decisions creates
  responsibility for their consequences
• Effective self-management starts in the
  clinic but lives in the real world!

      “In dreams begin responsibility”
           W. B. Yeats

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