Five Years On: What BIHR Has Learned About Lived Experience, Human Rights and Making Change Happen

Five years ago, I sat on the interview panel for BIHR's first Lived Experience Consultants. That's when I met two remarkable young people, Charli and Hanna, whose experiences of children's mental health services, and determination to improve them, absolutely blew me away. It was also when I formally interviewed fearless parent-carer Kirsten. I'd actually met Kirsten before. And, like others in health and social care circles, I already knew her infamous briefcase, crammed full of reports, inquiries, recommendations and reviews produced after failures, harms and tragedies. Kirsten would bring it to meetings and conferences, place it on the table, and ask the questions that could make a room very uncomfortable: "What is actually being done? Surely, we're not producing another report?"

It was hard to argue with her.

The reason we were all sitting in that interview room was because (now mostly defunct) NHS England had commissioned BIHR to develop a national programme for staff working in children's inpatient mental health settings. The aim was not simply to teach people about the Human Rights Act (HRA). It was to help staff understand their role as HRA duty bearers and use human rights in practical ways to improve everyday decision-making, challenge poor practice and better uphold young people's rights.

As my new colleagues quickly taught us, many of the most important decisions are often the smallest ones, but they can have a profound impact on young people and families. From the outset, we knew that if we were serious about helping services implement human rights, we needed to complement our specialist practical legal expertise with the knowledge of people who had direct experience of those systems.

But we also knew this could not be about collecting stories.

That briefcase, and the conversations it represented, raised a question that goes to the heart of BIHR's work: Why, when we know so much about what goes wrong in the systems that should support people, is meaningful change still so hard?

I can't claim that we have the answers. But I do believe part of the problem is that we have become very good at documenting people's experiences, and much less good at building the conditions necessary for change.

The same is true of the Human Rights Act; it has not failed these systems. More often, these systems have failed to implement and embed the Human Rights Act. They have missed the opportunity to use its rights and duties framework to create the culture of respect for human rights it was always intended to achieve.

Over the last decade, lived experience has rightly become a bigger part of conversations about policy, public services and social change.

But not all lived experience work is the same.

Too often, people are asked to share experiences, provide a quote, sit on an advisory group or validate decisions that have largely already been made. Their trauma is effectively farmed.

At BIHR, we wanted to do something different. Our Lived Experience Consultants were not recruited simply because they had experiences to share. We wanted to invest in them as contributors, co-developers and co-deliverers. Alongside helping us understand how systems felt and functioned in reality, they developed their knowledge and confidence around the Human Rights Act itself, connecting lived realities to rights, responsibilities and practical solutions.

What we've built is a richer approach that brings together human rights law, lived experience, practitioner insight, policy knowledge and implementation expertise. We see the impact of this in the confidence of communities to use the HRA to hold decision-makers to account, of public officials to make rights-respecting decisions, in the improvements services commit to after our programmes, and in national policy, legal and parliamentary change shaped by rights and reality.

Now, through our RITES Committee (Real-life Insights, Tips, Experiences and Stories), this work informs BIHR's national policy and influencing work. Charli, Hanna and Kirsten are all founding members, alongside people with lived and practitioner experience of using the HRA to create positive change in their own lives, the lives of the people they work with and their communities.

RITES Committee members are paid for their expertise and work alongside us to shape consultations, parliamentary engagement, policy development and practical human rights resources. They are not there simply to share experiences, but to bring expertise gained through using the Human Rights Act to create change in communities, services and systems. Together, lived and practitioner experience help us understand how systems operate in reality, while BIHR brings specialist expertise in human rights law, implementation, policy and systems change. The combination creates experience-informed evidence, more practical solutions and stronger opportunities to influence law, policy and implementation.

As reflected in our new Strategy for Everyday Justice (out soon!), this approach has become central to how we think about change. It has reinforced our belief that lasting progress comes from bringing together different forms of expertise, investing in implementation and creating the conditions for human rights to be realised in everyday life.

Our approach won't be right for every organisation. Some focus primarily on challenging public authorities from the outside. BIHR's role is deliberately different. We challenge public bodies, regulators, parliamentarians and policymakers to do better, while also working alongside them to help make that happen. Our focus is not simply identifying where rights are at risk, but supporting the practical implementation of human rights in everyday decisions, services and systems.

That allows us to connect communities with the institutions that have the power to make change. We don't just talk about the potential of human rights; through strategic implementation we help demonstrate their value in practice. And we don't believe that knowledge belongs only to lawyers or policymakers. A core part of BIHR's mission has always been making human rights practical, accessible and usable for everyone.

We bring together human rights law with what people are experiencing on the ground because of the decisions being made in organisations and institutions that have the power to do things differently. That’s where some of BIHR’s most important change work happens.

As we prepare to launch BIHR's new Strategy for Everyday Justice, these are exactly the experiences that have informed our thinking.

They have reinforced something we see repeatedly across our work: lasting change rarely comes from identifying a problem alone. It comes from combining expertise, building relationships, investing in implementation and creating the conditions for people and systems to do things differently.

For now, there is some respite from the immediate political threats that have surrounded the Human Rights Act in recent years. But it would be naïve to think those threats have disappeared. In an increasingly volatile political climate, where mainstream political voices continue to question the future of the Human Rights Act and the European Convention on Human Rights, the need to demonstrate their value in practice has never been greater.

That is why BIHR believes the challenge facing us today is fundamentally one of implementation. The Human Rights Act already provides a powerful framework for dignity, fairness, accountability and participation. The question is whether those rights are consistently understood, embedded and applied across the systems that shape people's everyday lives: health, care, housing, education and welfare.

That's where we'll be focusing our efforts over the next five years. Because implementation is not separate from protecting human rights; in many ways, it is the best defence we have. When people experience human rights making a difference to real decisions, real services and real lives, they become much harder to dismiss as abstract concepts or political talking points.

Like Kirsten's briefcase, our work cannot only be about producing more reports telling us what went wrong, important as that is. It also has to be about investing in the people, relationships, skills and systems that ensure those lessons are finally put into practice. Yet for too long, it has received the least attention and investment.

This sits at the heart of BIHR's Strategy for Everyday Justice. Over the next five years, we'll be sharing more about what strategic implementation of the Human Rights Act looks like in practice, and working with communities, public bodies and decision-makers to help ensure human rights are not only protected in law, but experienced in everyday life.

This article is part of our Unlocking the Power of the Human Rights Act series exploring how strategic implementation can help make human rights real in everyday life.