Presentation given by: Pippa Hague to Summer School 2004 Date: 4 August 2004 Chronic disease self management the potential role of the active patient in wider engagement

Chronic Disease Management Improving the quality of life for people living with chronic disease, reducing interventions and bringing care closer to home.

The Context for CDM Young and healthy Options, convenience access Planned and systematic disease management Promoting and supporting self management Choice Development of chronic conditions Increasingly dependant Joined up health and social care Taken from Sue Roberts - National Lead for Diabetes presentation to the CDM conference 18 May 2004

Managing the complexities... DiabetesDiabetes H e a rt F a i l u r e DementiaDementia COPDCOPD ChoiceExpert patientsMedicines ManagementCase finding and intensive case management Tertiary, primary, community, acute etc Living with a chronic disease (SS, housing, transport, employment etc)

Chronic Disease Progression Time Wellness Stage 1: 80% people Stage 2: 15% people Stage 3: 5% people Adapted from Pieter Degeling presentation to NSC SHA 27 July 04 Resource usage High Low

Chronic Disease Management and Shared Care Highly complex patients High risk patients 70-80% of CDM population self care Professional care

Chronic Care Systems Model Improved Outcomes Informed, Activated Patient Productive Interactions Prepared, Proactive Practice Team Health System Health Care Organization Delivery System Design Decision Support Clinical Information Systems Self- Management Support Resources and Policies Wagner et al. Community Health systems must take advantage of community-based programmes that enhance chronic illness care Successful self- management programmes rely on a collaborative process between patients and providers

Improved Outcomes Informed, Proactive Patient Productive Interactions Prepared, Proactive Practice Team Health System Health Care Organization Delivery System Design Decision Support Clinical Information Systems Self- Management Support Resources and Policies Wagner et al. Community Effective chronic illness management requires more than simply adding interventions to an existing system focussed on acute care. Basic changes in delivery system design are required for effective care management Practice teams require evidence-based protocols to guide their decisions about patient care Effective information systems can measure the success of treatment across populations and deliver reminders about care for individual Changes in the health system will only improve chronic illness care if active informed patients work together with provider teams

Too many initiatives what goes where ? PPI CDM Choice CDSM

Empowered Patients… Are patients who take responsibility for managing their condition with respect to: Knowledge of their disease Self monitoring Therapeutic interventions Diet Exercise Smoking Paradoxically: this requires structured support from service providers

Empowered Patients… The Expert Patients Programme is a Chronic Disease Self Management programme available through the NHS Other support programmes (DAPHNE for diabetes) are becoming more widespread - focused on medicines management, but with an emphasis also on the active patient

But then what? Once we have let the genies out of the lamps you cant ask them to go back in!

So ? People living with long term conditions have a vested interest in helping the NHS and social care get CDM right! People living with long term conditions are ideally placed to tell us where it is wrong!

So how do we do it ? Strengthening accountability - involving patients and the public: practice guidance Section 11 of the Health and Social Care Act 2001