www.nationalvoices.org.uk @NVTweeting

The users’ perspective: what integrated care should look like

Robert Johnstone

15 Million people with LTCs in England

But..the system is still designed to respond to

acute episodes of illness

The Challenge!

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

Web of care – Alzheimer’s

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

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

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

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

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

Our guide

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’

info@nationalvoices.org.uk @NVTweeting

Thank you for listening