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

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

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EULAR
is an umbrella and partnership organisation
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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

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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 choices

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Working Wonders launch - in Brussels on Oct 13
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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 lt1 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

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UK case study

• Policy context

Shift to primary care Focus on public health /
prevention Patient led health service Personalis
ation (inc. personal budgets)
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Self-management right information, right time

• Arthritis Cares 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

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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.

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Practical benefits to healthcare

• From a recent survey of people who use Arthritis
  Cares 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, its 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 youre alone in
  fighting this rotten thing, emphasising being
  positive.

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Informed Decision Making

• The information provided has helped me a great
  deal its 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.

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Dept. of Health Information Standard
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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)

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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