Patient power and voice in the new health and social care world

Health and care as if people matter

Jeremy Taylor, 12 March 2014

What matters to us?

• Access • Information• Communication• Involvement • Family and friends• Privacy, confidentiality and dignity• Support for self-care and independence• Personalised service, coordination and continuity• Practical support• Emotional support

What matters to us?

• I want to see a doctor• I want a service I can trust• I want to know what’s going on• I want to be treated as a person• I want a say• I don’t want to be passed from pillar to post• I don’t want to repeat my story every time• I want to be in control• I want to be looked after • I’m in pain. I’m exhausted• I’m not happy about the care my Mum is getting

Living with .....People as managers

Out-of-Hours Doctors

GPDistrict Nurses

Social Worker

Malcolm &Barbara

ConsultantContinence

Adviser

Speech & Language Adviser

Dietician

CommunityDentist

OccupationalTherapist

Equipment Service

PhysiotherapistAlternating

Mattress technician

Wheelchair Service

Oxygen serviceDirect

PaymentsTeam; Rowan

Org.

Alzheimer’sSoc outreach

worker

Care team2 live-in carers (alternating weekly)Replacement carer[Some night nursing – Health]Emergency carers & Barbara

The Web of Care

(Last 7 yrs)

DementiaAdvisoryNurse?

The house of care

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

Information

My goals/outcomes

My goals/outcomes

Communication Communication Decision making Decision making

Care planning Care planning

Transitions Transitions

8

Goal setting and action planning

Care and support planning

Year of Care

“More than medicine”• Self-management• Family• Friends• Neighbours• Peer-supporters• Befrienders• Advocates • Community health champions• Patient and lay leaders• Voluntary sector organisations

You can’t do this alone!• The world is too complex*• The duties too onerous• The money insufficient• The health and care workforce too stretched• The needs go beyond narrowly clinical• Statutory agencies can’t do this alone!

* Many to Many: how the relational state will transform public services, Muir and Parker, IPPR, Feb 2014

Changing models of careFrom: To:

Patients as recipients People as partners and managers of their health

Primarily medical Increasingly social

Professionals designing services

Co-design of services

Mobilising doctors, nurses and drugs

Mobilising citizens and communities

Treatment plans Participative care and support planning

Clinical outcomes Quality of life outcomes

Hospital focus Out of hospital focus

How much do you want let go?

A care system in which people matter

• We have rights• We define success• We are partners• We are managers• We are leaders• We are all part of the workforce• No decisions about us without us

• Thanks for listening• www.nationalvoices.org.uk• Follow us on Twitter• @NVTweeting• @JeremyTaylorNV