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

2. 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

3. 13 day stay, MRI scam, CT scan, IVIG, and a million other tests/drugs, hospital food… : ????????

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

5. Orthotics: £20 + consultation with orthotist

6. Yearly Pre-Paid Prescription Certificate: £104.00

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

8. A supportive healthcare professional that understands: PRICELESS

9. Getting back sailing: PRICELESS

11. 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

15. Source: NHS England Personalised Care and Support Planning Handbook

16. 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?

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