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 MumBrotherDadBrother Assistive Technology

USER FOCUS 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 / 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 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