Transforming Healthcare Experiences for Children with Autism & Learning Disabilities
How North East London ICB reduced appointment anxiety by 72% and improved healthcare experiences for 1,850+ children and young people with autism and learning disabilities through the Digital Passport programme.
1The Challenge
For children and young people with autism and learning disabilities, healthcare appointments can be overwhelming experiences. North East London ICB identified that many families were avoiding routine healthcare due to the distress these visits caused—leading to delayed diagnoses and poorer health outcomes.
The challenges were multifaceted. Children with autism often have specific sensory needs, communication preferences, and triggers that vary significantly from person to person. Generic approaches to care simply don't work. Yet healthcare staff, despite good intentions, often lacked the individualised information needed to provide appropriate support.
Parents and carers described having to repeat their child's needs at every appointment—what works to help them stay calm, what might trigger distress, how they communicate. This repetitive advocacy was exhausting and often happened when families were already stressed.
Emergency situations were particularly challenging. When a child with autism presented at A&E, the unfamiliar environment combined with communication barriers could escalate distress rapidly. Staff had no way of knowing what specific accommodations might help.
2The Solution
North East London ICB partnered with TinyMedicalApps to implement the Autism & Learning Disabilities Passport—a digital tool designed to give every child and young person a voice in their healthcare, regardless of their communication abilities.
The passport captures a rich, personalised profile: how the individual communicates (including any AAC devices or systems they use), sensory preferences and triggers, things that help them feel calm, important health information, and how they show pain or distress. Families work with their healthcare teams to create this profile, ensuring it authentically represents the child's needs.
The programme included comprehensive training for healthcare staff across acute, community, and primary care settings. Staff learned not just how to access passports but how to genuinely adapt their practice based on the information provided. This included practical skills like adjusting lighting, reducing noise, modifying communication style, and allowing extra time.
Visual schedules and social stories specific to different healthcare settings were integrated into the passport, helping children prepare for appointments. A "pre-visit" feature allows families to share the passport with specific departments before an appointment, giving staff time to prepare appropriate accommodations.
In emergency settings, the passport is accessible via a QR code that families can show on their phone, ensuring critical information is available even in unexpected situations.
3The Results
The transformation in healthcare experiences has been remarkable. Families report a 72% reduction in anxiety associated with healthcare appointments. Children who previously refused to enter hospitals are now attending appointments with appropriate support in place.
Healthcare professionals report a fundamental shift in their practice. 85% of clinicians say the passport has improved their communication with patients who have autism or learning disabilities. Many describe having insights into their patients that would have taken multiple appointments to discover previously.
The efficiency gains have been significant too. Initial assessment appointments are 40% shorter on average, not because care is rushed but because staff have the information they need upfront. This has reduced waiting times for other families while improving the quality of care.
Perhaps most importantly, 91% of families now rate their healthcare experiences as positive, compared to just 42% before the programme. Children are attending routine health checks that they previously avoided, leading to earlier intervention and better long-term outcomes.
The programme has been highlighted by NHS England as a model of good practice in reasonable adjustments for people with learning disabilities and autism.
“Before Oliver had his passport, hospital visits were traumatic for everyone. He couldn't tell staff what was wrong, and they didn't know that bright lights overwhelm him or that he needs his comfort toy to stay calm. Now, staff read his passport before they even see him. Last week, when we arrived for his blood test, the lights were dimmed, they had his favourite music ready, and the nurse spoke in the slow, clear way he needs. He smiled. He actually smiled at a blood test. I never thought I'd see that.”
What's Next
North East London ICB is expanding the programme to include transition support for young people moving to adult services. The passport will evolve to capture adult-specific needs and preferences, maintaining continuity through what is often a challenging transition.
A new self-advocacy module is being developed for young people who are able to contribute to their own passport, giving them agency in how they are supported during healthcare encounters.
The ICB is also piloting integration with dental services and community pharmacies, extending reasonable adjustments beyond traditional healthcare settings.