Patient, Patient Leader and Self-Management Coach Anya de Iongh Patient, Patient Leader and Self-Management Coach @anyadei

Symptoms Medications Test results Appointments Fatigue Pain Self-esteem Impact on my job/career Identity Frustration Depression Social life Loneliness Cost Can’t do hobbies I used to

13 day stay, MRI scam, CT scan, IVIG, and a million other tests/drugs, hospital food… : ????????

Neck brace, and consultation with Orthotist: ??????

Orthotics: £20 + consultation with orthotist

Yearly Pre-Paid Prescription Certificate: £104.00

Two days of tilt table tests: ???????

A supportive healthcare professional that understands: PRICELESS

Getting back sailing: PRICELESS

What is Patient Experience? Biological dysfunction Satisfaction with provider Totality of living with health, illness and treatment Suzanne Shale, (2013) “Patient Experience as an indicator of clinical quality in emergency care”, Clinical Governance: An International Journal, Vol 18 Iss: 4, pp.285-292

Source: NHS England Personalised Care and Support Planning Handbook http://www.england.nhs.uk/wp-content/uploads/2015/01/pers-care-guid-supp-pract-del.pdf

We are all very familiar with these as clinical pathways We are all very familiar with these as clinical pathways... How familiar are we with the pathways that patients tread? What do these clinical pathways look like from a patient’s perspective?

Wilderness in between appointments, the 99 Wilderness in between appointments, the 99.999% of the time we are left in the wilderness in between appointments