A User Journey view from the outside

Helen Olsen

• CEO & Managing Editor, UKAuthority• Managing Editor, DCLG’s Local Digital Campaign • Wife and Mother to three small boys - one with

a complex disability• Heavy user of Public Services - informed but

still struggling!

CONSULTANTS / HOSPITALS

• Paediatric Neurologist (London Hospital A)

• Paediatric Bladder Specialist (London Hospital B)

• Neuromuscular Respiratory Specialist (London Hospital C)

• General Paediatric Consultant (Local Children’s Hospital D)

• Community Paediatrician (Local District Hospital E)

• Regional Eye Hospital (Hospital F)

COUNCILS• School / one-to-one (School)• LEA SEN team (County Council)• Educational Pyschologist• Social Services CDT (County Council)• Social Services OT (County Council)• DLF grants officer (District Council)• Planning officer (District Council)• Council Tax benefits (District Council)

CENTRAL GOVERNMENT

• DWP – Disabled Living Allowance• (Motability)• HMRC

COMMUNITY HEALTH

• Physiotherapist• Occupational Therapist• Speech & Language Therapist• Continence Service• Wheelchair Service• Health Visitor• GP

Charlie

Mum

Brother

Dad

Brother

Assistive Technology

USER FOCU

S

• Focus on the user: on their unique relationship with the entire public sector - understand their relationships and dependencies

• Share information: make the journey easier - tell the user what they need, where they go next, how they access help and support, what they have a right to expect, keep them updated

• Change the culture: break down professional and organisational silos to put the user at the heart of everything

Digital

• Text / email • Facebook / yahoo groups etc (229 MyasthenicKids)• Many parents of disabled children hold a black belt in Google-Fu and social

media… it is their life-line

Data

• Identify common journeys / needs for a disease / disability• Predict possible outcomes and be ahead of support needs• Identify and share clinical /therapeutic best practice• Identify similar symptoms of children with rare disease (research)• Whole exome / genome sequencing = REALLY BIG DATA

ICT

• Share information about the user with those that need it• Enable communication and collaboration around the user’s needs• Coordinate activity and support around the user• GET AN ELECTRONIC PATIENT RECORD WORKING!

Myasthenia Abnormal muscle weakness and fatigue

Congenital Myasthenic Syndrome - genetic disease- 2-4 per 1,000,000

Myasthenia Gravis / LEMS - autoimmune disease - 1 in 10,000

Problem at the junction between the nerve and the muscle: the signal does not get through. Characterised by rapid and variable fatiguing of skeletal muscles: impacts breathing, eating/swallowing, walking, eyes, hands etc.

18m old, arriving at party

2 hrs later at tea...

How fatigue builds