from patient voice to patient leadership camer… · improve health and well-being in the community...
TRANSCRIPT
From Patient Story to Patient Leadership
Alison Cameron: Patient Leader & Fellow of CLAHRC NWL
Who I was
Revolving doors
• Over 100 acute hospital admissions
• Ten stays in psychiatric units ranging in admission length from two weeks to one year.
• Two residential rehabs
• One therapeutic community
• One Social Services hostel
• 18 months in supported housing
• Two alcohol day programmes
• Two stints in dual diagnosis Day Programmes
What I became?
• Heart sink patient
• Frequent flier
• DSM IV 308.81
• Maelstrom of mayhem
FROZEN ASSETS
Poster child for patient engagement• Questionnaires
• Focus groups
• A “story”
• A disembodied voice
• A “usual suspect”
• Occupant of “patient corner”
Experience “captured” but rarely liberated
Consultation Fatigue
• 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.
(Gilbert, D & Doughty, M, “Bring it on: 40 Ways to Support Patient Leaders”, Centre for Patient Leadership, 2013)
Leadership – an inside job
• Self belief
• Self awareness
• Self management
• Drive for improvement
• Personal integrity
NHS Healthcare Leadership Model
• “The most important element…comes from a combination of emotional expressiveness, self-confidence, self determination and freedom from internal conflict”.
• “The way that we manage ourselves is an essential part of being an effective leader”
• “The areas identified…within the model may be as much about how you manage yourself as about how you manage your behaviour and relate to other people”
Developing, remembering,
re-capturing skills.Building,
re-building confidence,
capacity & skills
Lived experience
Patient Leadership
NIHR CLAHRC NWL FELLOWSHIP 2013
Aim of the fellowship programme: To develop a range of future leaders in innovation and improvement with the authority and ability to advance change, both locally and beyond, thus building capacity and supporting spread and sustainability in line with CLAHRC for NWL objectives
General Practice
Behavioural Psychology
Social work / commissioning
Patient leaders
PaediatricsPhysiotherapy
MidwiferyPublic Health
Perspectives from Fellows
“It is easy to talk about patient involvement but when we
still subconsciously use words such as “us” and “them” we
are far from where we are & need to be”
“Quality improvement is driven by passionate enthusiasts
and our job is to find and tap the passion & enthusiasm in
us all, however that manifests itself”
“It is equally daunting for both professionals & patients to
come out of comfort zones of being defined by
professional roles/diagnostic labels. Once there is that
shared understanding of the barriers we ALL face, then it is
possible for real change to occur.”
Where are you on the ladder?
• Patient Leadership
• Patient Voice/influence
• Passive Patient
The power of “co”
• Co Discover
• Co Define
• Co Develop
• ( ? ) Deliver
The other “F” word
Activists Thought leaders/change agents Designers Entrepreneurs Innovators Researchers Formal representatives Educators/Trainers Advocates Peer supporters Community champions
Oli Anderson @OliJAnderson
Enabled by Design@enabledby
Mark Doughty @markjdoughty
Anya Deiongh @anyadei
BPD FFS sue sibbald@BPDFFS
Michael Seres @mjseres
Karen Maskell @GleefulKaz
Lynne Craven @Lynne_Craven
Carrie Grant@CarrieGrant1
Out of our boxes
