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

1. 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

2. EULAR is an umbrella and partnership organisation 2 Armenia Albania Belarus Austria Bosnia & Herzegovina Belgium Cyprus Bulgaria Denmark Czech Republic Estonia Croatia France Georgia Germany Greece Hungary Finland Israel Lebanon Ireland Italy Latvia Iceland Macedonia FYR Poland Lithuania Norway Netherlands Moldova Russian Federation Portugal Serbia & Montenegro Slovak Republic Slovenia Romania Spain Ukraine United Kingdom Turkey Sweden Switzerland

3. 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

4. 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

5. Working Wonders launch - in Brussels on Oct 13 5

6. 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

7. UK case study Policy context: Shift to primary care Focus on public health / prevention Patient led health service Personalisation (inc. personal budgets)

8. 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

9. 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.

10. 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.’

11. 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.’

12. Dept. of Health Information Standard

13. 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)

14. 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