The challenge  

A regional integrated care system serving a population of one million people faced a robust evidence base demonstrating the inequalities experienced by people with a learning disability and/or autism. The integrated care board commissioned The PSC to support the establishment of an improvement programme for Learning Disability and Autism services, moving from scoping into the design of a collective vision and an aspirational model of care and support. 

The system faced major structural and commissioning change, alongside workforce pressures and variation in service quality, so there was a clear risk that redesign activity would be driven by organisational constraints rather than what mattered most to people using services. Meaningful involvement of people with lived experience was essential to shaping a credible long-term improvement programme that reflected real lives, avoided consultation fatigue, and built trust in a system undergoing significant change.  

The lived experience involvement approach  

The PSC began with desk-based research to review existing lived experience insight, ensuring engagement was targeted and constructive and avoiding repeatedly asking people to recount the same experiences.   

Through engagement with senior leaders and stakeholders across the system, consensus emerged that learning disability and autism services should be progressed as separate programmes, reflecting the different challenges, maturity of proposals and strategic context for each area.  

For the learning disability programme, we: 

• Delivered two in-person workshops, each involving around 20 adults with learning disabilities, to explore what good support could look like across life stages.  
• Held nine more workshops online, each involving around 10 adults with learning disabilities and their carers. The creative outputs of the workshops directly inspired the final ‘overall vision’ (an annotated flower inspired by drawings made during the workshops).  
• Held follow-up one-to-one conversations with participants to sustain engagement, check understanding, and demonstrate that contributions were valued.   
• Worked with trusted local lived experience and voluntary, community, and social enterprise (VCSE) organisations to recruit and co-facilitate this engagement, recognising the importance of safe, familiar spaces and relationships.   

To gather wider perspectives on what good learning disability services should look like, we developed accessible Easy Read surveys, sharing these online via local VCSE partners.  

To progress the autism programme, The PSC embedded service users and carers directly into formal governance and delivery structures. Autistic people or parents and carers of autistic young people were active members on: 

• Steering groups responsible for overarching programme leadership 
• Delivery groups focused on accessible communications and signposting  
• Delivery groups focused on children and young people’s services. 

Outcomes

Lived experience insight shaped both the direction and design of these improvement programmes, grounding system ambition in real priorities and everyday realities. The programme launched with clear, embedded structures for ongoing lived experience involvement, rather than one-off consultation.  

By the time of handover, people with lived experience were not only influencing strategy but holding formal roles in governance and delivery. This helped build trust, improve relevance, and ensure that future service changes are rooted in what genuinely improves lives.  

By the end of our support, the system had moved from broad ambition to an operationally credible programme of change. This included: 

• A defined autism programme with a clear set of fast-track and long-term objectives 
• A learning disability programme shaped around a co-designed aspirational model of care and prioritised set of objectives 
• A strong governance framework, with the programme director onboarded, delivery groups for priority workstreams identified, and kick-off meetings scheduled 
• A budgeted plan for sustaining lived experience involvement post-handover, including a specification for a coordination role filled by a VCSE partner. 

The PSC exists to make public services brilliant. Our approach to solving the most complex challenges in the public sector focuses on building support among stakeholders from across systems and foregrounding voices from the communities where change matters most. Speak to our team to find out more.