Research for practice | Co-production | Participation

From clinical models to a lens we can hold together

A new paper about co-designing mental health guidance with neurodivergent young people and families has prompted us to think about something bigger. What happens when co-production does not simply influence the plan, but begins to change the frameworks, language and professional structures through which we understand people?

A newly published paper in Research Involvement and Engagement feels particularly close to home for us at ASI Wise and The Sensory Project.

Williams, Torr, Taylor and Tuomainen describe a 12 month programme of Patient and Public Involvement and Engagement undertaken as part of the AIDE doctoral study. Neurodivergent young people, parents, carers and professionals worked together to develop practical guidance for Child and Adolescent Mental Health Services.

It is a paper about co-production, but underneath that it is also a paper about participation. Who gets heard? What happens when somebody communicates differently from the way a service expects? What happens when sensory experience, appointment structures, uncertainty, language or relationships become barriers? And who gets to decide what “engagement” looks like?

Co-production is in our DNA

At The Sensory Project, co-production is not a new workstream we have added because the language has become more visible in health, care and research.

It has shaped the project from the beginning.

From 1999 onwards, the early thinking that grew into Sensory Levels and later Sensory Ladders®, Sensory Spiders™ and Sensory Grids™ developed through use, observation, discussion, audit and repeated change alongside the people who were actually using them.

People receiving support shaped them. Families shaped them. Staff teams shaped them. Students and therapists shaped them. Services trying to make sensory knowledge work in ordinary life shaped them.

We may not always have used today’s language of co-production, but the principle was already there. Professional knowledge was never intended to be the only knowledge in the room.

That approach has continued through research planning, participation in research projects, service evaluation, audit, education, Communities of Practice and the continuing development of our practical tools.

And, more recently, it has changed something more fundamental: the way we name the structure we use for understanding participation.

Why PEAR TREE™ changed

PEAR TREE™ began in our language as a model. Then people using it told us that the word did not feel right.

For some people, “model” felt professional and clinical. It carried echoes of a medical model in which somebody else holds the expertise, applies a model and explains the person through it.

They wanted something that felt shared.

So we listened.

It became the PEAR TREE™ Lens Framework.

That was not simply a change of terminology.

It was co-production changing the concept itself.

If people can influence only the colour of a resource, the accessibility of a leaflet or the final wording of something professionals have already designed, we need to be careful about calling that co-production.

Co-production has to leave open the possibility that somebody may say, “This does not work for us”, and that the thing we created will change as a result.

Model, method, framework or lens?

There is no perfectly fixed academic boundary between these words. Different professions and disciplines use them differently. But the distinctions can still help us think about what we are creating and, importantly, how power moves through it.

This is why the name PEAR TREE™ Lens Framework matters to us.

The framework provides a shared scaffold.

The lens describes the way we look through that scaffold.

Co-production describes how we develop it, use it, question it and change it together.

A framework does not own the person

This distinction matters because a framework can still be used in a top down way.

No beautifully designed tool automatically creates co-production.

A professional could pick up PEAR TREE™, complete every section alone and then tell somebody what the framework says about them. The headings might be right, but the relationship would not be.

The PEAR TREE™ Lens Framework is intended to be held between people.

The person can look through it. A parent can look through it. A teacher, support worker, nurse, occupational therapist, physiotherapist, speech and language therapist, psychologist, doctor or service leader can look through it.

Different people may notice different things.

That is not a problem to be corrected. It is information.

PEAR gives us somewhere to look together

TREE then helps us move from noticing towards thoughtful action through Triage, Relational thinking, Embodied Evaluation and Ethics.

Importantly, the framework does not ask only what the person might need to do differently.

It asks what we might need to change too.

“Talk to me, not at me”

That is why the new Williams and colleagues paper feels so relevant.

One of the young contributors offered a beautifully direct message to mental health services:

The contributors described barriers across referral, triage, assessment, treatment and discharge. Neurodivergent presentations could be misunderstood as non-engagement, opposition or lack of motivation.

Yet when contributors were asked what might improve services, many of the changes were strikingly practical. Share information beforehand. Offer different ways to communicate. Allow breaks. Consider sensory needs. Change the length or format of appointments. Keep families informed. Make transitions clearer. Speak directly with children and young people.

Suddenly the question is no longer simply, “Why will this young person not engage?”

It becomes:

Sensory support makes more sense when participation is the question

This matters enormously in sensory practice because sensory language can easily become another way of locating the difficulty inside the person.

We can administer questionnaires. We can identify patterns. We can observe movement, praxis, sensory discrimination and regulation. These things can be important.

But a sensory score does not tell us, by itself, what it is like to be this person in this place, doing this activity, with these people, today.

The same person may participate very differently when the room changes, the activity changes, the communication changes, pain changes, fatigue changes, predictability changes or another person changes the way support is offered.

That is not inconsistency.

That is a nervous system living in context.

The relational response may be where power becomes most visible

One of the important findings within the new paper was how much relationships mattered. Contributors described experiences of feeling unheard, misunderstood and excluded from decisions.

They also described the difference it made when somebody listened, remembered what had previously been said and genuinely tried to understand.

This is why relational response within PEAR TREE™ cannot simply mean being kind.

The professional’s response becomes part of the environment.

The way we ask a question matters. The amount of processing time matters. Whether silence is tolerated matters. Whether communication without speech is recognised matters. Whether the person knows what happens next matters. Whether somebody is believed matters.

Power matters too.

If a framework helps us analyse the person receiving care but never invites us to examine what we ourselves bring to the interaction, then the framework has missed something essential.

The lens needs to turn both ways.

From reports about people to plans made with people

This is also why our thinking about reports and plans continues to evolve.

Reports have an important place. Assessment, professional reasoning, clinical accountability and formulation matter.

But a beautifully written report does not automatically change somebody’s everyday life.

A plan becomes meaningful when the person recognises themselves within it. When their priorities are visible. When families and support teams understand it. When recommendations are usable in the places where life actually happens.

And when the person has genuine influence over what is tried next.

This is why co-production is not simply another stage after assessment.

It can change the assessment question itself.

Can co-production change the framework?

We think it has to.

If PEAR TREE™ is genuinely a co-produced Lens Framework, then co-production cannot stop when the framework is published.

People need to be able to tell us when language no longer works. Different communities need to be able to identify assumptions we have missed. Research needs to be able to challenge it. Practice needs to refine it. Lived experience needs to continue shaping it.

That does not mean the framework becomes so fluid that it means anything.

There still needs to be conceptual clarity, evidence and a recognisable structure.

But fidelity to a framework should not require us to stop listening.

Perhaps we need a new category of practice tool

Health professions have long talked about theories and models of practice.

We are beginning to wonder whether there is room alongside them for something slightly different.

Not another clinical model that claims to explain a person.

Not a protocol that prescribes the next response.

Not professional reasoning dressed as co-production because somebody was invited to approve the finished result.

Perhaps what we are developing are co-produced Lens Frameworks.

A co-produced Lens Framework does not remove professional knowledge. It changes where that knowledge sits.

Research evidence matters. Neuroscience matters. Assessment matters. Professional expertise and responsibility matter.

But those forms of knowledge sit alongside lived experience, embodied knowledge, family knowledge, cultural knowledge, environmental knowledge and the person’s own understanding of what matters in their life.

Expertise contributes.

It does not automatically outrank.

What the new BMC paper can and cannot tell us

It is important not to ask the Williams and colleagues paper to carry more weight than it can.

This is a methodology paper describing Patient and Public Involvement and Engagement and professional contribution activities. It was not a formal qualitative study of the contributors’ experiences, and formal qualitative analysis was not undertaken.

Recruitment was largely through existing networks. Demographic information was not collected consistently across every involvement activity, and younger children were underrepresented.

The resulting guidance still needs formal evaluation to understand implementation, acceptability and impact within services.

So this paper does not show that co-production automatically improves CAMHS outcomes, and it is not evidence for PEAR TREE™.

That is not the connection we are making.

What it offers is a contemporary example of lived experience influencing priorities, language, practical recommendations and the design of a resource rather than being invited in only after the important decisions have been made.

A step change in how we name our work

We do not need to abandon models.

We do need to become more thoughtful about what kind of knowledge structure we are creating, what job it is intended to do, who has the power to use it and who has the power to change it.

A model may help represent something.

A method may help us decide how something will be done.

A framework may organise what needs to be considered.

A lens reminds us that we are always looking from somewhere.

And co-production asks who gets to stand beside us, look through that lens, move it, challenge what we think we see and influence what happens next.

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