1. www.nationalvoices.org.ukwww.nationalvoices.org.uk @NVTweeting The users’ perspective: what integrated care should look like Robert Johnstone

2. 15 Million people with LTCs in England But..the system is still designed to respond to acute episodes of illness The Challenge!

3. What do people who use services want? ‘Integration, integration, integration’ the top demand from patient groups during Bill pause – See ‘9 big shouts’ on the NV website People want coordination - not necessarily (organisational) integration. People want care - where it comes from is secondary. – See ‘What patients want from integration’ on the NV website

4. Web of care – Alzheimer’s

5. Why a Narrative is needed Integrated care is ‘a hodgepodge concept’* At least 175 definitions** Process (‘integration’) confused with outcome (‘integrated care’)*** Defined by policy makers, system leaders, clinicians and researchers – neglecting outcomes for service users * Kodner D, ‘All together now: a conceptual exploration of integrated care’, Healthcare Quarterly 13(Sp), 6–15. ** Armitage GD, Suter E, Oelke ND and Adair C, ‘Health systems integration: state of the evidence’, International Journal of Integrated Care 9(17), 1–11 2009 *** The Audit Commission, ‘Means to an end: joint financing in health and social care’, Health National Report, London 2009

6. Person centred coordinated care “I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me.” Information My goals/outcomes Communication Decision making Care and support planning Transitions Narrative -- Summary 6

7. More information and next steps Don Redding, (2013) "The narrative for person-centred coordinated care", Journal of Integrated Care, Vol. 21 Iss: 6, pp.315 – 325 4 new Narratives which express the perspective of a different group of people Development of a survey tool to allow UK and international health and social care leaders to measure the quality of integrated care from the perspective of their users

8. Person-centred, not just coordinated: care and support planning Coordination: care coordinated around the person, integrated personal budgets Member feedback: improves outcomes but despite commitments, is not happening enough House of Care: engaged, empowered individuals Care Bill: care and support planning in legislation

9. What is care and support planning? Our aims Create a common understanding of what care and support planning means across health and social care Raise awareness of the approach amongst those who could benefit. What we did Engaged with over 250 organisations and individuals over the course of a year Developed some ‘Principles of Care and Support Planning’ and a guide to introduce people to the approach

10. Our guide

11. Key points See the whole person – strengths as well as ‘needs’ Importance of training to enable more person-centred approaches Focus on building skills, knowledge and confidence to self manage Recognise the value of social interventions - ‘more than medicine’

12. info@nationalvoices.org.ukinfo@nationalvoices.org.uk @NVTweeting Thank you for listening