Expert in the room Out of our boxes. Patients as agents of Change

Alison Cameron

Supported by7th August 2015

Joining in today and beyond• Please use the chat box to contribute continuously during the

web seminar and raising your hand to join the discussion • Please tweet using hashtag #EdgeTalks and the handle

@School4Radicals @theedgenhs• Join our Facebook group School for Health and Care Radicals

and The Edge NHS• We will produce summaries of the discussions on each module

using Storify and Pinterest and put on the website• Join in the Tweetchat each Wednesday at 4-5pm (GMT) using the

hashtag #EdgeTalks

The team today

Session lead:Kate Pound

@kateslater2

Presenter: Alison

Cameron@allyc375

Twitter monitor:Carol Read

@CarolLRead

Case study:Becky Seale Chat room

monitor:Dom Cushnan

@DomCushnan

Case study :Rachel

Matthews

OUT OF OUR BOXESPATIENTS AS AGENTS OF CHANGE

Where are we on the ladder?

Patient Leadership

Patient Voice/influence

Passive Patient

Mindsets not models

Who Am I?

EARLY SEEDS PLANTED

MY PERSONAL EXCLUSION ZONE

• Heart sink patient

• Frequent flier

• DSM IV 308.81

• Complex needs

• Vulnerable

• Maelstrom of mayhem

15 stays in psychiatric units2 residential rehabs1 therapeutic community1 Social Services hostelOver 100 acute hospital admissions18 months in supported housing2 substance misuse day programmes2 dual diagnosis day programmes

Frozen Assets

Welcome to the world of service user involvement

The Parachute Regiment

CONSULTATION FATIGUE

“A revolution is an idea which has found its bayonets”Napoleon

A must read by PROFESSOR EDGAR S CAHN

“I didn’t like feeling useless. My idea of who I was - the ‘me’ that I valued – was someone who could be special for others, who could do something they needed and here I was, a passive recipient of everyone’s help.”

Edgar Cahn

Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change NEF/NESTA 2009

Recognising people as assets. Building on people’s existing capabilities. Promoting mutuality and reciprocity. Developing peer support networks. Breaking down barriers between

professionals and recipients. Facilitating rather than delivering.

CO PRODUCTION CORE PRINCIPLES

It will take massive labour of all kinds by all to build the core economy of the future – an economy based on relationships and mutuality, on trust and engagement, on speaking and listening and caring – and above all on authentic respect. We will not get there simply by expanding an entitlement system which apportions public benefits based on negatives and deficiencies: what one lacks, what disability one has, what misfortune one has suffered. Edgar Cahn

Developing, remembering,

recapturing skills.Building,

rebuilding Confidence &

capacity

Lived experience

Patient Leadership

Patient as leaderAn inside job

Patient Leaders are those patients, users and carers who have the confidence and capability to influence change. Their main purpose is to improve health and well-being in the community and/or improve health and social care services. They do this by working with others to influence decision-making. David Gilbert and Mark DoughtyBring it on: 40 Ways to Support Patient Leaders”

Self beliefSelf awarenessSelf managementDrive for improvement Personal integrity

NHS LEADERSHIP MODEL “Emotional expressiveness, self-confidence, self determination and freedom from internal conflict”

“As much about how you manage yourself as about how you manage your behaviour and relate to other people”

IS IT SAFE TO COME OUT YET?

SEEDS NOT SEMTEX

“A non-violent revolution is not a programme of seizure of power. It is a programme of

transformation of relationships, ending in a peaceful transfer of power.”

Gandhi

“I can do things you cannot, you can do things I cannot; together we can do great things”Mother Teresa

IT’S ABOUT TIME…We had a chat

INTRODUCING

Becky Seale - The Kings FundRachel Matthews - CLAHRC NW London

Rachel Matthews

Becky SealeConsultant, Leadership Development

IT TAKES ALL SORTS

Formal representatives Activists Designers Entrepreneurs Innovators Researchers Educators/Trainers/coaches Advocates Peer supporters Community champions

Oli Anderson @OliJAnderson

Anya Deiongh @anyadei

Mark Doughty @markjdoughty

David Festenstein @RecoveryGuru

David Gilbert @DavidGilbert43

Leigh Kendall @leighkendall

Karen Maskell @GleefulKaz

BPD FFS sue sibbald@BPDFFS

Michael Seres @mjseres

Alex Silverstein @AlexYLDiabetes

Rosamund Snow @BMJPatientEd

Kate Swaffer @KateSwaffer

LET’S NOT FORGET THE FORTUNE AT THE BASE OF THE PYRAMID

DON’T JUST CAPTURE EXPERIENCE…

LIBERATE IT!

THANK YOU COMRADES

Alison CameronTransformation FellowNHS IQ Horizons Group

@allyc375