• The Scottish Independent Care review is due to conclude in early 2020.
  • It prioritizes those with lived experience of the system, rather than outside recommendations.
  • Systems reflect the processes that bring them into being.

When the state enters into your life, the kinds of decisions it makes are the amount of tax you’ll pay, or when you put the bins out. When the state enters into the lives of children, the kinds of decisions it makes are where they’ll live, whether they get to see their parents, brothers or sisters, or at what age they have to leave their home.

These are seismic decisions.

Sustainability development goal 16.2 states the world must “end abuse, exploitation, trafficking and all forms of violence and torture against children” with a particular emphasis on those who are in alternative care.

Children enter care because the state has deemed that the home environment doesn’t offer them the safety and protection that they need. However, being in state care may place children at greater risk of human trafficking or orphanage tourism. Organizations like Lumos and Maestral exist to prevent this from happening – the very things that they were taken into care to protect them from.

In Scotland, the state too often doesn’t provide a good enough substitute for family life. It has been accepted that infants, children and young people do not always feel loved, belong to a family or have permanent, nurturing relationships, and that more needs to be done to make this the norm.

Due to the tireless campaigning of people with care experience, Scotland is in the midst of transforming its care system. The First Minister of Scotland, Nicola Sturgeon, announced the Independent Care Review in 2016, which is currently underway and due to conclude in early 2020.

When Fiona Duncan was appointed chair of the Care Review in February 2017, she said, “While the review will be complex and the issues challenging, it will be the expertise of children and young people with lived experience of the system who will ensure a focus on what matters. It will be crucial that the review not only hears their voices, but that real change happens as a result.”

The Care Review has since been reimagining Scotland’s care system ever since, delivering an example for how valuing lived experience and careful participation can help transform systems of all kinds for the better.

Participants in the Scottish Care Review.
Image: The Care Review

The value of lived experience

“We need to revisit our theories of learning by entering into an active dialogue with people who hold very different opinions from those of us who are professionals. Above all, it is this process that will enable us to continue to learn” (Minter, 2001).

Far too often, the requirements of systems take precedence over the needs of individuals, and this can result in “hitting the target but missing the point.” The Care Review in Scotland has understood that system measures are important, but it is lived experiences that matter most.

How we understand the success of the care system in Scotland therefore needs to be understood through care experiences.

Lundy's Model guides the Care Review's participation work.

With principles from Lundy’s model (see above) guiding every part of the Care Review’s participation work, a Participation Hub was set up to hear from infants, children, young people and adults with care experience and the wider audience of others who are involved in care.

Fiona Duncan has frequently said “what works for you will work” in terms of participation, so the process has always been made to fit the people who are sharing with the Care Review.

This results in an entirely tailored approach, rooted in relationships, for all.

1. Voice

Typically, national reviews involve very senior people meeting behind closed doors, presenting recommendations and then those recommendations being shelved. Fox explains how “it is not surprising in these contexts that techniques [regarding participation] remain formal and irrelevant to large sections of young society and that findings align with existing adult assumptions about young people that centre on deviance, incompetence and the need for adult control” (2013). By centring on the voice of people of all ages with experience of care, this process is turned on its head, which allows for both incremental and transformational change.

The Care Review values all lived experiences of care, including what I call "quieter voices". These are people that the care system has sometimes labelled “hard to reach”, including infants, those with experience of long stays in hospital, or kinship care. The Care Review has never accepted this, and all of these have had their views and experiences actively sought through the Participation Hub.

The Care Review also uses creative methods such as Lego play, artwork or digital technology to allow people to share their views in ways that best suit them. Further, more than half of the Care Review team have personal lived experience of care.

2. Space

Many people talk about having bad memories of visiting the dentist as a child. Into adulthood, the idea of going to the dentist can cause these people real anxiety and the dentist chair, the smell and the sound of the drill are all reminders of those difficult childhood experiences. When we feel like this, it makes it hard to function or think clearly.

This theme may resonate for people who have experience of care, where meeting in certain spaces may remind them of where decisions were made in anxiety-inducing meetings which had a lifelong impact. The Care Review committed to making sure that people could share freely by meeting contributors in ways and spaces that they felt safe, without re-traumatising. To do this, focusing on relationship has been imperative.

Those sharing with the Review have been supported to bring trusted people to Care Review events, and people in the Participation Hub have spent time building relationships with infants, children, young people and adults all across Scotland. Relationships allow for dialogue to be had about what and where feels safe and will allow people to contribute.

As well as this, the Care Review commissioned non-profit mental health charity Health in Mind to offer support during meetings or sessions, and afterwards. This support was totally confidential; people were able to access this support 24/7 and this was a key part of the commitment to being “trauma-informed”.

3. Audience

Fiona Duncan has been clear from the outset that she is accountable to people with care experience. The primary audience is the care community, and this has been built into the participation methodology. Over half of the co-chairs at the Care Review have lived experience of care.

The co-chairs have been at events, roadshows, conferences and one-to-one meetings all over Scotland, and the purpose has always been to listen, to ask open questions and to use "appreciative enquiry". As a result of this and the work of the Participation Hub, over 5,000 people shared their views or experiences directly with the Care Review in less than three years.

At the end of each Review stage, the output is checked with new people who haven’t been involved before called and this has prevented the Care Review from becoming an echo chamber. When the Care Review concludes, it will report to Scottish government and it will be those with lived experiences that have generated a new vision.

4. Influence

“Participation is not about giving young people a voice. They already have that. Participation is about letting children and young people’s voices have real weight. It is about recognizing that every young person has the right to be actively engaged in the making of decisions that will influence their lives” (Ellen Maloney, who grew up in the Scottish care system)

Civil Society

What is civil society?

Whether you call it “third sector”, “social sector” or “volunteerland”, civil society includes an array of different causes, groups, unions and NGOs. Their combined aim is to hold governments to account, promoting transparency, lobbying for human rights, mobilizing in times of disaster and encouraging citizen engagement.

Ranging from small online campaigns to giants such as Amnesty International and Greenpeace, civil society employs around 54 million full-time workers and has a global volunteer force of over 350 million.

The World Economic Forum is committed to accelerating the impact of civil society organizations. With a view to this, it created Preparing Civil Society for the Fourth Industrial Revolution, a multi-sectoral platform to support the transformation of the social sector and its inclusion in the governance of emerging technologies.

Civil society is a key stakeholder for driving public-private collaboration and advancing the Forum’s mission. Through dialogue series and platform initiatives, civil society actors from a wide range of fields come together to collaborate with government and business leaders on finding and advocating solutions to global challenges.

The Care Review is ensuring that all of those who contributed have influence, with lived experiences that directly inform the recommendations. These will be root and branch; acknowledging the role that all of Scotland can play, whether that is in education, health, universal services or otherwise.

The Care Review will also present a robust human and economic cost model for the vision of care, alongside an implementation plan. This means that the thousands of people who shared with the review will have an impact for generations to come. By doing this, those who have previously held power now have less of it. That ceding of power is a vital shift – and this needs to be a feature of the future of care in Scotland, and across the world.

Systems theorist Myron Rogers wisely said that “the process you use to get to the future is the future you get”. The Care Review in Scotland has shown a new way; one which values have been central and where people directly impacted by care has real weight.

By meaningfully involving people with care experience of all ages and care settings, by tailoring the approach to meet people’s needs, by ensuring that relationships are at the heart, by challenging vested interests and by ceding power, Scotland is transforming its care system – and others should look to our example to do the same.