Overview by Alison: Over the 17 years since my diagnosis with Post Traumatic Stress Disorder, I have slowly moved along a continuum reclaiming power in respect of my own health. I then chose to go further and use insight gained along the way to push for change in the wider system. My talk will focus on how I was able to make the transition from passive patient to patient leader. Patient leadership requires a share in power between patient and professional and an acknowledgement that we are more than a “voice”, more than our “patient story”, but also a source of skills and expertise which can be used to effect transformational change. I believe passionately in genuine co-production – in bringing together patients and professionals in equal partnership, questioning assumptions on all sides and challenging our notion of hierarchy. This has its challenges for all concerned. We are all – to some extent – in boxes labelled by our job title or our diagnosis. These boxes can be defensive bunkers offering an illusion of protection from fear of change in an already chaotic, uncertain climate. My talk will discuss these challenges and offer solutions as to how we might address them together. Hopefully my session will help participants find the courage to emerge from boxes labelled “patient” or “professional”, and risk venturing into the territory where both sides are prepared to walk in the shoes of the other and boundaries are blurred. We have the potential then to create something truly transformational. If you have any thoughts or questions, tweet us: @theedgeNHS, @allyc375 and use #EdgeTalks

1. Expert in the room
Out of our boxes. Patients as agents of Change
Alison Cameron
Supported by
7th August 2015

2. 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

3. 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
@DomCushna
n
Case study :
Rachel
Matthews

4. OUT OF OUR BOXES
PATIENTS AS AGENTS OF CHANGE

5. Where are we on the ladder?
Patient
Leadership
Patient
Voice/influence
Passive Patient

6. Mindsets not
models

8. Who Am I?

10. EARLY SEEDS PLANTED

16. RSONAL EXCLUSION ZONE

17. • Heart sink patient
• Frequent flier
• DSM IV 308.81
• Complex needs
• Vulnerable
• Maelstrom of
mayhem

19. 15 stays in psychiatric units
2 residential rehabs
1 therapeutic community
1 Social Services hostel
Over 100 acute hospital admissions
18 months in supported housing
2 substance misuse day programmes
2 dual diagnosis day programmes

25. Frozen Assets

30. Welcome to
the world of
service user
involvement

31. The Parachute Regiment

32. ONSULTATION FATIGUE

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

38. A must read by PROFESSOR EDGAR S CAHN

39. “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

41. 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

42.  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

43. 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

47. Developing,
remembering,
recapturing skills.
Building,
rebuilding
Confidence &
capacity
Lived
experience
Patient Leadership

48. Patient as leader
An inside job

49. 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 Doughty
Bring it on: 40 Ways to Support Patient Leaders”

50. Self belief
Self awareness
Self management
Drive for improvement
Personal integrity

51. 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”

54. IS IT SAFE TO COME
OUT YET?

56. SEEDS NOT SEMTEX

57. “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

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

59. IT’S ABOUT
TIME…
We had a chat

60. INTRODUCING
Becky Seale - The Kings Fund
Rachel Matthews - CLAHRC NW London

61. Rachel Matthews

62. Becky Seale
Consultant, Leadership Development

63. IT TAKES ALL SORTS
Formal representatives
Activists
Designers
Entrepreneurs
Innovators
Researchers
Educators/Trainers/coaches
Advocates
Peer supporters
Community champions

64. 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

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

67. DON’T JUST CAPTURE EXPERIENCE…

69. THANK YOU COMRADES
Alison Cameron
Transformation Fellow
NHS IQ Horizons Group
@allyc375