From diagnosis to participation: reflections from the launch of the Independent Review

Moving towards needs-led support

I recently attended the launch of the Independent Review into Autism, ADHD and Mental Health with Professor Fonagy, Chair of the Review, and Alison McGovern, Minister of State for Social Care and Mental Health. 

You’ll already know the Review's headline messages. Its focus on participation as a meaningful measure of success and the shift toward needs-led rather than diagnosis-dependent support strongly reflects occupational therapy values and practice. For many occupational therapists, these principles feel familiar, reflecting the profession's long-standing focus on enabling people to participate in occupations that matter to them. 

As occupational therapists, we understand that what matters most is not just a diagnosis but whether people can participate in occupations that give purpose and meaning to their lives. Whether accessing education, finding and sustaining employment, maintaining relationships, managing daily routines, or engaging in communities, participation matters most to the people we support. 

Alongside the Review's findings, the Minister highlighted several themes that particularly resonated with me and point to important opportunities for occupational therapy.  

High-quality support should be equitable, but not identical

The Minister rightly highlighted that people should have equitable access to evidence-based support that improves outcomes. She noted that effective services don’t need to look the same everywhere. Instead, support should respond to local circumstances and community needs. 

People's opportunities for participation are shaped by a wide range of factors, including access to housing, education, employment, health services and community resources. These local determinants of health and wellbeing vary considerably across the UK. Occupational therapists are uniquely placed to understand this interaction between individuals, environments and occupations, and to help design support that reflects local needs while maintaining high standards of quality.  

Our challenge is to identify where innovative, collaborative approaches are already improving outcomes for autistic people, people with ADHD and people with mental health conditions, and to share learning more widely. Occupational therapists already provide practical, needs-led support in communities, schools, workplaces and health services. By sharing examples of what's working locally, we can help spread good practice, influence future service development and demonstrate the profession's contribution to improving participation and wellbeing.  

Supporting people while they wait  

A second theme was the growing move towards needs-led support while recognising that large-scale system change takes time. Across health, education, employment and social care, many children, young people, and adults still face long waits for assessment and diagnosis. 

The event's message was clear: people shouldn’t have to wait for support while they wait for a diagnosis.  

Many occupational therapists are already delivering practical, effective interventions based on identified needs rather than diagnostic labels. Some services have developed excellent ‘support while you wait’ models that help people build skills, access activities, overcome barriers to participation and improve outcomes that matter before formal assessment processes are complete. This might include occupational therapists working alongside schools to develop inclusive environments, supporting people to remain in employment and offering group-based interventions. At the same time, people wait for assessment, or we connect individuals with community-based opportunities that support engagement in everyday life.  

These examples matter. If we are serious about reducing inequalities and improving outcomes, we need to identify what works, understand why it works and support wider adoption of effective approaches.  

The power of lived experience  

Perhaps the most powerful discussion centred on the importance of listening to and sharing first-person experiences. The Minister highlighted the need to help society better understand what life is actually like for autistic people, people with ADHD and their families.  

Stories help us understand the barriers people encounter, the support they receive and the difference that support can make. They also challenge assumptions about what people can achieve. Too often, public conversations focus on difficulties and deficits. The Review's ambition is different: to demonstrate that, with the right support, people can lead full, meaningful and fulfilling lives.  

Occupational therapists hear these stories daily. We see the impact of timely, person-centred support on participation, confidence, independence, and quality of life. We also see the consequences when support is unavailable or delayed. 

Those experiences are powerful evidence and deserve to be heard.  

A call to action for occupational therapists