Expert Opinion: Hannah Tough on Inclusion

As Chief Executive of Inclusion North CIC, how do you balance driving strategic impact with ensuring that the voices of people with lived experience remain at the heart of decision-making?

Strategic impact and lived experience are not competing priorities at Inclusion North. They are inseparable.

People with lived experience are the experts of their own lives. That principle is embedded in our governance and strategic decision making. Our Board is 50% lived experience, our Advisory Council is 93% lived experience and our Experts by Experience Hub is entirely lived experience. They shape our priorities, influence commissioning conversations and hold us accountable.

Inclusion North is not mine. I am in the privileged position of leading it, but it belongs to the people we represent. Our leadership team is entirely neurodivergent, which strengthens how we think about access, power and accountability every day. That matters because inclusion is not something we talk about externally. It shapes how decisions are made internally.

When we sit at system tables across the North East and Yorkshire and Humber, we are not speaking on behalf of people. We are bringing structured lived experience insight directly into decision making, and sometimes that means asking difficult questions.

You’ve said that inclusion should be more than a policy; it should be a practice. Can you share what that looks like day-to-day at Inclusion North?

Inclusion as practice means accessibility is designed in, not added later.

It looks like Easy Read as standard, Photo Symbols embedded in communication, lived experience on recruitment panels and meetings structured so everyone can participate meaningfully. It means co-production from the outset, not consultation on a half formed policy.

But more than that, it means being honest about power. If a strategy looks good on paper but does not work in real life, we say so. If language excludes people, we challenge it. Regional, local and national strategies for people with a learning disability and autistic people must be usable and implemented, not left sitting on shelves.

Inclusion in action should be practical, visible and everyday. If it cannot be felt by the people it is meant to serve, it is not working.

What are the biggest inequalities that people are facing in the North East, Yorkshire, and Humber right now, and how is Inclusion North working to address them?

In our regions, people with a learning disability and autistic people experience entrenched health inequalities, long waits for assessment and support, limited housing options and inconsistent access to employment.

We know from national data that people with a learning disability die significantly younger than the general population. That reality should unsettle all of us. In the North East we have also seen concerning patterns around premature mortality and suicide among autistic people. Even where numbers are small, they reflect a wider pattern of inequality and gaps in preventative support. Data recording remains inconsistent, which makes it harder to respond effectively.

Parents are navigating safeguarding and family court processes without accessible information or reasonable adjustments. That should concern us deeply. Parents are pulling children out of school and homeschooling as they have lost confidence in the safety of their children.

Inclusion North works at system level because structural inequality requires structural change. We influence Integrated Care Boards, local authorities and providers to embed lived experience and accountability into mainstream services. We ensure there is a feedback loop so people are not just consulted once but remain part of shaping decisions over time.

With your background in data and quality assurance, how do you approach measuring the impact of Inclusion North’s work beyond numbers, capturing real change in people’s lives?

System change is difficult to measure through numbers alone.

Some of our strongest evidence of impact comes through stories. We have seen people grow in confidence, move into leadership and find their voice through involvement with Inclusion North. That kind of growth cannot always be captured in a spreadsheet, but it is real and it matters.

There is always a tension in system change work between what can be counted and what truly counts. Our work with SCIE on getting people to hospital safely is one example where impact is tangible. We have received direct feedback that the guidance has helped individuals access hospital safely. That kind of work saves lives.

We are continuing to strengthen how we capture impact by combining quantitative data with lived experience reflection so we do not reduce complex change to simplistic measures.

Collaboration is central to Inclusion North’s mission. Can you give an example of a partnership that’s been particularly powerful in driving change?

Our partnership with the Restraint Reduction Network about minimising the use of restraint has been particularly powerful.

By combining lived experience insight with national expertise, we have contributed to work that promotes dignity, reduces harm and challenges restrictive practice culture. This has shifted conversations from managing behaviour to understanding distress, which is a fundamental cultural change.

We have also completed a regional review of leisure inclusion for children and young people with profound and multiple learning disabilities in partnership with LittleSENDsations. That review did not just highlight gaps. It challenged commissioners and providers to rethink what inclusion really looks like outside of statutory services.

The most powerful partnerships are those where everyone is prepared to be challenged and to change.

As a qualified BACP accredited psychotherapeutic counsellor, how has your training influenced your leadership style and approach to supporting both your team and the communities you serve?

Irrevocably, but first and foremost I learnt never assume you know someone’s story and always look for their potential. My counselling training has fundamentally shaped who I have become and how I lead.

It has taught me to slow down when systems want to rush, to be curious rather than defensive and to hold complexity rather than reach for simple answers. Working therapeutically has reinforced that behaviour always has context and that people do not exist in isolation from the systems around them.

It has also deepened my understanding of trauma, power and relational safety. In leadership that translates into creating psychological safety within my team, being reflective about my own assumptions and being willing to acknowledge when I get something wrong.

For me, counselling has not changed what I value. It has sharpened it and strengthened my commitment to meet people human to human. It has made me more intentional about creating environments where people feel safe enough to grow and confident enough to use their voice.

Leading an organisation in the current social and political climate can be tough. What keeps you motivated when the challenges feel overwhelming?

Meeting with our Advisory Council is always grounding. We often talk about difficult topics, but knowing that Inclusion North has made a difference to someone’s confidence or sense of belonging keeps me going.

I am also motivated by the gap between what we say about equality and what people actually experience. That gap should not exist. When systems feel slow or resistant, I remind myself that change happens because someone keeps showing up and asking the uncomfortable questions.

When challenges feel overwhelming, I return to the belief that inclusion in action should be everywhere, not just in certain rooms. That belief keeps me motivated to continue speaking up and challenging language that reduces people to acronyms. As one of my team with lived experience once told me letters and labels are for tins of soup, not people.

Lived experience is clearly a cornerstone of Inclusion North’s work. What have you learned personally from engaging with people’s lived experiences, and how has it shaped your leadership?

Working alongside people with lived experience has fundamentally reshaped how I think about power.

I have learned how easily systems silence people, often unintentionally. I have also seen how quickly confidence grows when someone is genuinely listened to. That has changed how I approach governance and leadership. I am much more conscious about who is in the room, who is not and whose voice carries weight.

It has also required me to reflect on my own assumptions and my own neurodivergence. Lived experience does not just inform governance. It should reshape it. It makes leadership more honest and more accountable.

Looking ahead, what would you like to see change nationally in how society approaches inclusion and equity for people with a learning disability and or autism?

Nationally, I want to see inclusion embedded structurally across health, social care and public services. But I also want it to go further than services.

For me, this is about citizenship. People with a learning disability and autistic people are citizens first. That means rights, belonging, contribution and opportunity. It means being part of community life, not just navigating systems. Going to gigs. Having friendships. Being visible in everyday society without everything being framed as support.

Reasonable adjustments should not rely on individuals repeatedly explaining themselves. Systems should work better by default.

Through our work we have seen how culture change and co-production can reduce harm and promote dignity. That systemic approach should become the norm, not the exception.

We also need better national data on parents with a learning disability and autistic parents within safeguarding systems so inequality is visible and addressed. Without visibility, inequity persists.

Ultimately, inclusion should mean citizenship in practice, not just policy.

What advice would you give to other leaders in the charity and care sector who want to make inclusion and equity more than just a buzzword in their organisations?

Leaders should ask themselves honestly whether inclusion is embedded in governance or whether it is tokenistic.

If people with lived experience are only involved once decisions have effectively been made, that is not co-production. It is consultation theatre.

Co-production must start at the beginning and extend to board level. People should be involved in planning, decision making and challenging how things are working.

Language matters because language shapes culture. Accessibility matters because access shapes power. Accountability matters because without it, inclusion remains rhetoric.

Inclusion is not a project. It is a redistribution of power. If you sit in a room thinking you are above anyone else, even on the inside that is not true co-production.

At The For Baby’s Sake Trust, we work with both parents to break cycles of domestic abuse and give babies the best start in life. How do you see inclusion and equity intersecting with early years and perinatal support?

Inclusion and equity in early years and perinatal support mean recognising that parents with a learning disability or autistic parents have the same right to family life as anyone else.

Assumptions about capacity can be harmful. Accessible information, reasonable adjustments and trauma informed approaches can strengthen families and prevent escalation. Prevention must include belief in parents’ potential, not just assessment of their risk.

As a psychotherapeutic counsellor I see how early relational support can interrupt cycles of harm. Joined up and compassionate systems create safer foundations for babies and parents alike.

We have recently expanded our programme, For Baby’s Sake, into the North East of England. In your view, what are the opportunities and challenges in creating more joined up trauma informed support for families in the region?

The opportunity is significant. The North East has strong voluntary sector networks and a genuine appetite for collaboration. There is real potential to build something that is joined up from the outset rather than trying to retrofit partnership later.

The challenge is that trauma informed and person centred language is often used, but not always lived. We see this in system spaces where families are discussed without them being meaningfully involved. In some areas, time allocated for complex multi professional discussions is simply not enough to understand the full context of a person or family. When time is constrained, voice is often the first thing lost.

If joined up support is going to be meaningful, it has to involve families directly, not just represent them. It also requires better data so we can see clearly where parents with a learning disability or autistic parents are falling through gaps.

Success would look like genuine collaboration across health, social care and voluntary sector partners, with lived experience embedded from the start and a shared commitment to practical change rather than rhetoric.

We are eager to work alongside partners to make that happen.