CYP Voice and Influence Tool

The children and young people’s voice & influence tool

How are you working with children and young people to help improve their health and care, and tackle health inequalities?

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Top tip!

You can navigate to different sections of the tool throughout

What's inside..?

Welcome

Let's get started

Results and next steps

Policy context

Children and young people's voice in practice

Case studies

About this tool

At Barnardo’s...

Our vision is that the voices and lived experiences of children and young people routinely inform and influence what we say, how we work and the decisions we make and those we want to influence externally. We recognise this is their right under the UN Convention on the Rights of the Child.

We believe that children and young people should have opportunities to have their voices heard and be taken seriously in decisions that affect them. We believe this leads to better decision-making, which means children and young people are better off.

We have 3 key objectives:1. Listen and respond to the voices and experiences of children and young people. 2. Create opportunities for children and young people to shape the future. 3. Speak out alongside children and young people.

Video: Rukshana Kapasi Director of Health, Quality and Inclusion

Mission

Objectives

Vision

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

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Video: Josh Harsant Head of Voice and Influence

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Barnardo’s Voice and Influence Strategy

The underpinning core driver

Under the United Nations Convention on the Rights of the Child (UNCRC), all children and young people have the right to 🡪

give their views freely in all matters affecting them, and to have them listened to and taken seriously.

the best possible health – which includes good quality health care, clean water, nutritious food, a clean environment and education on health and wellbeing.

Article 24 UNCRC

Article 12 UNCRC

express their thoughts and opinions and to access all kinds of information, providing it is within the law.

a regular review of their health and social care treatment, the way they are cared for and their wider circumstances – if a child or young person lives away from home for the purpose of care or protection (e.g. with a foster family or in hospital).

Article 13 UNCRC

Article 25 UNCRC

Involving children and young people in decisions about their health and care is a statutory requirement. This is referenced in several policy directives and pieces of statutory guidance 🡪

Working in Partnership with People and Communities (2022)​

Integrated Care Systems: Design Framework (2021)

Model Integrated Care Board Blueprint (2025)​

Health and Care Act (2022)​​

The 10-Year Health Plan for England aims to “put power back in the hands of people and professionals to make the best choices about their own lives, treatment and care” (Prime Minister, Sir Keir Starmer).

In doing so, it lays out three shifts that aim to support the transition towards a health service that is modern, efficient, accessible, and empowering.

Deep engagement with patients and the public to shape their strategic plans. The NHS 10 Year Plan defining goal is "a patient-controlled NHS, that provides real choice, real control and real convenience for patients." p83 "Studies run in community settings, such as pharmacies and GP practices, will help shape service models as we roll out the Neighbourhood Health Service." p119

Investment in patient and public (‘service user’) involvement functions, to ensure services meet the needs of communities."...put patient choice, voice and feedback at the heart of how we define and measure quality" p86

The plan requires ICBs to evolve into strategic commissioners.

This involves:

It also lays out expectations for increasing power to the patient.

This includes:

Improving direct patient feedback as central to improving quality.

"Direct patient feedback will be core to our new approach to quality." P89

Significantly improve the complaints process within all NHS commissioners and providers.

"we will significantly improve the complaints process within all NHS commissioners and providers. We will set clear standards for both the timeliness and the quality of responses." p90​ ​

Mandatory frameworks where engagement is a key component 🡪

The Patient and Carer Race Equality Framework (PCREF)

The Patient Safety Incident Response Framework (PSIRF)

Quality assuranceNational and local guidance, regulation and inspection

Strategic planning, financial management Long-term transformation

Clinical care design and population health management

Individual health and care planningNeighbourhood, community-based primary care services

Governance, strategy and policy development

Research, monitoring and evaluation

Commissioning and performance

Service design, development and delivery

Across the whole health system, children and young people should be involved in decisions that affect their lives. This includes individual decisions about their health and care, and decisions at a strategic and/or national policy level. Within each level of an organisation, there are lots of different areas children and young people can have a voice and influence in 🡪

Areas children and young people can have a voice and influence

Hear from Nahida:

There are multiple ways children and young people can be involved in decision-making.

Working in Partnership with People and Communities outlines the different types of engagement that can be undertaken, which we ‘translate’ here for children and young people specifically.

Co-design

Co-creation

Co-production

Co-evaluation

Collaborate

The voice and influence of children and young people

Hear from Nel:

Click the different elements for more info

Increasing depth of involvement

Complaint

Compliment

Express

Representation

Engage

Consult

Participate

Footnote: This page is adapted from the Barnardo’s Voice and Lived Experience Framework – which reflects Working in Partnership with People and Communities

Hear from Ester:

At Barnardo’s, our work is shaped by the four key dimensions of the Lundy Model. This underpinning model helps deliver excellent and inclusive voice and influence work, supporting children and young people to realise their rights under the UN Convention on the Rights of the Child.

The following principles are embedded at the heart of these four dimensions:

2. Supporting and enabling children and young people to form and give their views and share their lived experience, in their way, on their terms, to get the best out of them.

1. Designing and providing safe, ethical, inclusive and meaningful opportunities for children and young people to give their views and share their lived experience.

Space

Voice

Trauma-informed

Trauma-informed, anti-racist & inclusive practice

Anti-racist

Anti-oppressive

3. The views and lived experiences of children and young people are heard by the people who can act or make a real difference.

4. The views and lived experiences of children and young people are responded to and/or acted upon, and feedback is provided to those involved.

Influence

Audience

Inclusive

Voice and influence work should always generate a positive impact for the children and young people who participate, as well as the services supporting them. Here are some of the impacts great voice and influence work can lead to 🡪

Hear from Ester:

Improved confidence in health and wellbeing

Improved health outcomes

Stronger community connections

Better services

About this tool

This tool is primarily aimed at health organisations in England but can also be applied or adapted for those in Cymru, Northern Ireland and Scotland too.

This is not a test.

This is not another ‘how to do participation and engagement’ toolkit.

This tool is designed to help you carry out a review of how your organisation currently supports the voice and influence of children and young people.

It is also for leaders who are confident in their voice and influence practice with children and young people, and interested in sharing examples of best practice with peers.

You can use this tool to reflect on how children and young people are involved across different levels of decision-making and settings. It will support you to assess your current approach and identify opportunities to review, sustain, or improve your work.

This is for leaders across the integrated health and social care sector looking to review and further strengthen their engagement with children and young people to better inform health provision and reduce health inequalities.

By the end of your review, you should have a clearer idea of what you're doing well and what your key areas for development are.

We know there are lots of toolkits and resources out there, and we don’t want to reinvent the wheel. Here’s what already exists, to illustrate how this tool can help add value and support development in this area of work 🡪

How to embed action on health inequalities into integrated care systems HS Confed, 2024

A Fair And Equal Opportunity To Enjoy Good Health – a Young Person’s Toolkit AYPH, 2022

Standards for children having a health care test, treatment or examinations iSupport, 2023

Addressing health inequalities through engagement with people and communities CQC, 2025

'You're Welcome’ Standards DHSC, 2023

We don’t want this tool to be the same, or compete, with existing tools.

Here’s how we think this tool is different and can help enhance how you support children and young people to engage in developing health inequalities strategies and programmes 🡪

Child and young person focussed

This tool is designed for ICBs to identify whether children and young people are meaningfully involved in developing, delivering and evaluating health inequality strategies.

Integration with ICBs

Existing tools and guidance often lack detail and support on how to integrate youth participation into ICB decision-making processes, particularly in relation to reducing health inequalities – this tool will help with this.

Young people shaped

Lots of toolkits are designed with the system in mind, rather than what young people have told us about their experiences of health inequalities – this tool has been informed and shaped by the experiences of, and feedback from, young people themselves.

Leadership buy-in, commitment & vision

This tool is framed around 5 domains 🡪 These domains have been informed by evidence from across Barnardo’s services, our Children and Young People's Health Equity Collaborative, existing research, and young people’s feedback and experiences. They form the basis of the tool and are essential for delivering excellent, inclusive voice and influence work with children and young people. The five domains can be mapped against the principle Lundy domains

Organisational culture, resources & infrastructure

Quality, feedback & impact

Opportunities for engagement

Partnerships & community relationships

Principle Lundy dimensions

Barnardo’s domain

Leadership Buy-in, Commitment and Vision

Audience, Influence

Organisational culture, resources and infrastructure

Space, Voice

What the domain helps to demonstrate

Partnerships and Community

Space, Voice

Opportunities for engagement

Space, Voice

Quality, Feedback and Impact

Audience, Influence

How to use this tool

Leadership buy-in, commitment & vision

Under each of the five domains, there will be a set of indicators. As you work through the tool, you will be able to score each indicator using the following scale:

Quality, feedback & impact

Organisational culture, resources & infrastructure

1 = not yet in place 2 = emerging or initial stages 3 = growing 4 = fully developed and embedded

Once you've completed the tool, you will be asked to add up all of your scores to create a total score.

Opportunities for engagement

Partnerships & community relationships

You'll need a pen and paper to jot down your scores.

Your total score will give an indication of your overall readiness and capability for supporting excellent children and young people's voice and influence.

Let’s get started

Commitment and vision

There is a clear, articulated vision and commitment for CYP voice and influence, and wider engagement, in reducing health inequalities within our organisation.

Score each indicator in the domain: ​ 1 = not yet in place 2 = emerging or initial stages 3 = growing 4 = fully developed and embedded​

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

There is a named executive/senior leader within the organisation who has accountability for the voice and influence of children and young people.

What is your stated ambition for and commitment to children and young people's voice and influence within your organisation?

There is a clear CYP voice and influence strategy and/or action plan, which includes how CYP will be recognised, rewarded and/or remunerated for their engagement. This should be co-produced with CYP, or as a minimum, CYP should be consulted.

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Note down your score out of 12

Culture, resources and infastructure

There is a high level of understanding of CYP voice and influence theory and practice within our staff teams.

Score each indicator in the domain: ​ 1 = not yet in place 2 = emerging or initial stages 3 = growing 4 = fully developed and embedded​

There are dedicated staff with the right skills allocated to meaningfully and inclusively engage CYP in decision-making, who can both provide pastoral support to CYP, and work with and navigate senior stakeholders within the organisation.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

There is sufficient budget allocated to meaningfully and inclusively engage CYP in decision-making, to cover all out-of-pocket expenses and offer additional incentives.

What organisational infastructure and resources exist to ensure meaningful and inclusive voice and influence work is supported?

There is understood shared language and terminology around CYP voice and influence.

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All staff are provided with training, learning and development to help them understand and support meaningful and inclusive CYP voice and influence practice.

External resources and publicity materials are young-person friendly, inclusive and accessible.

Note down your score out of 24

Partnerships and community relationships

There are strong partnerships and effective collaboration with VCSE organisations, schools, and other health, safeguarding and social care bodies, ensuring coordinated care and consistent messaging.

Score each indicator in the domain: ​ 1 = not yet in place 2 = emerging or initial stages 3 = growing 4 = fully developed and embedded​

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

There is a VCSE Alliance or network that focusses on CYP or supporting CYP voice and influence (or wider engagement and social action).

How do you involve partners in promoting, supporting and delivering children and young people's voice and influence across your organisation?

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There are distributed resources for/to locally-led community organisations to support the voice and influence of CYP who are less heard or underrepresented in decision-making.

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Note down your score out of 12

Opportunities for engagement

CYP are involved, using one (or more) form(s) of voice and influence practice, in:​ a) Planning and design​b) Delivery and quality assurance​c) Governance, monitoring and evaluation

Score each indicator in the domain: ​ 1 = not yet in place 2 = emerging or initial stages 3 = growing 4 = fully developed and embedded​

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

CYP who engage in our work and decision-making are representative of the wider CYP population in our ICB footprint.

What children and young people's voice and influence activities are happening, where and with whom? Are lesser-heard or minoritised children and young people included and represented?

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There is a wide range of activities and opportunities for engaging CYP in our decision-making, which are accessible, age and stage-appropriate, creative, inclusive, and fun, and include online and digital options for CYP who wish to engage through that medium.

Write a brief description here

Note down your score out of 12

Quality, feedback and impact

There is a set of quality principles or standards for CYP voice and influence, to ensure we deliver consistently excellent and inclusive voice and influence practice.

Score each indicator in the domain: ​ 1 = not yet in place 2 = emerging or initial stages 3 = growing 4 = fully developed and embedded​

There is a clear process, procedure or agreement for ‘closing the loop’ with CYP, so they know the impact they have had on our work and decision-making.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

There is a repository or bank of data, information and evidence gathered from CYP, which informs decision making and reduces ‘re-asking’ CYP over time.

How do you ensure children and young people feel their voices really matter and are taken seriously in your decision- making?

Title

There is a clear, robust approach to recording ‘distance travelled’ for CYP and the impact their engagement in decision-making has had on them as individuals.

Write a brief description here

There is a consistent learning, feedback and evaluation process, based on our quality principles or standards, to help us continually improve CYP voice and influence work over time.

Note down your score out of 20

What's your score?

Note down your total score out of 80

Results and next steps

You’ve now completed your review. This is a moment to reflect and consider how you may want to act on your results. Your scores give you a sense of where your organisation or team currently stands in engaging children and young people, and highlights opportunities to build on your strengths. The following slides outline a summary of what your score might mean and suggests possible actions you could take. At the end, you’ll also find resource suggestions arranged by the review domains, to help you take the next steps.

Early development

Strong foundations

Advanced practice

Emerging practice

Starting point

33-48 total score

49-64 total score

0–16 total score

65-80 total score

17-32 total score

Help to establish the key building blocks of effective youth engagement.

Begin your journey with structured support to build youth voice into your system.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Use this side of the card to provide more information about a topic. Focus on one concept. Make learning and communication more efficient.

Showcase and expand your existing youth engagement excellence.

Support to strengthen and standardise youth engagement across your organisation.

Build on solid progress to embed youth voice strategically across your system.

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Next steps

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Your suggestedactions

Some recommended reading to get you started

0-16

Develop an internal commitment plan that sets out how children and young people will be involved.

Appoint internal champions to lead on the development of participation practice.

Lundy Model of Participation – as we set out at the beginning; four essential elements for meaningful participation: Link to the Lundy Model (EU Commission)

Starting point

Your children and young people's voice and influence is not yet established and work is at the initial stage.

The UN Convention on the Rights of the Child (Article 12) – lays out the right of every child to express their views in matters affecting them, and a valuable starting point for embedding participation as a right

Conduct informal listening activities to begin building trust and gathering insights.

Map current opportunities and barriers to voice and influence within the organisation.

Your suggestedactions

Barnardo’s can help you here, too – get in touch: VoiceAndInfluence@barnardos.org.uk

Some recommended resources to support the start of your journey

17-32

Define clear goals for voice and influence and communicate them across the organisation.

Implement small-scale engagement initiatives to demonstrate tangible outcomes.

The Hear by Right self-assessment framework - to help you plan, develop and evaluate your youth participation practice:

Early development

The UNICEF Child Friendly Cities & Communities Framework – to help you embed children’s rights in leadership and governance structures, offering practical examples from cities around the world.

Your initial activity or intent to involve children and young people is evident, though practice is at an early stage.

Establish links with external networks to strengthen capacity and access shared learning.

Involve children and young people in shaping voice and influence plans at an early stage.

Children’s Rights in Governance: guidance on integrating children’s rights into governance structures.

Your suggestedactions

Barnardo’s can help you here, too – get in touch: VoiceAndInfluence@barnardos.org.uk

Some great resources to further your emerging practice:

33-48

Identify and support staff champions to strengthen organisational confidence in engagement practice.

Introduce voice and influence frameworks or standards to establish a consistent foundation.

The Department of Health and Social Care’s You’re Welcome Standards – to help you demonstrate how ‘young person friendly’ your health and care services are, and where/how to improve them.

Emerging practice

Your voice and influence structures and approaches are beginning to develop, but practice is not yet consistent or fully embedded.

Listen and Change: A Guide to Children and Young People’s Participation & Rights – a guide to practical ways to genuinely listen to young people and translate that into organisational change.

Pilot engagement projects to test and evidence different approaches.

Review the accessibility and inclusivity of voice and influence opportunities to ensure broad representation.

Your suggestedactions

Recommended resources to support your strong foundations:

49-64

Extend participation into additional areas of organisational work to broaden influence.

Formalise youth governance structures such as advisory groups or youth trustee roles.

UNICEF’s Guidance to Support Meaningful Participation: Child and Youth Councils – practice advice on how to establish or strengthen youth council/forum structures

Strong foundations

Your engagement with children and young people is consistent and embedded in many areas. Further work could strengthen reach and impact across the organisation and externally.

iSupport standards - international collaborative rights-based standards to SUpport Paediatric Patients during clinical prOcedures by Reducing harm and establishing Trust

Embed voice and influence into monitoring and evaluation processes to measure outcomes more systematically.

Increase visibility of how children and young people’s contributions inform decision-making.

YoungMinds’ Evaluating Participation Toolkit – to help you measure the impact of young people’s engagement

Your suggestedactions

Some good further resources to look at:

65-80

Contribute to national or regional policy development by highlighting the voice and influence of children and young people.

Disseminate practice through case studies, publications, or events to share learning more widely.

How to embed action on health inequalities into integrated care systems (NHS Confed, 2024)

Advanced practice

A Fair And Equal Opportunity To Enjoy Good Health – A Young Person’s Toolkit (AYPH, 2022)

Your practice in children and young people's voice and influence is well embedded. This represents a position of strength and an example of best practice.

How and where to share your advanced practice:

Develop succession planning to ensure that participation structures remain sustainable over time.

Provide structured support or mentoring to other organisations at earlier stages of development.

If you use the Lundy Model, consider posting your work on the Lundy Model Network LinkedIn Group.

If you use the NYA’s Hear by Right model, consider using this template to write up a case study.

Your suggestedactions

If you are a VCSE organisation, join the National Participation Forum coordinated by Barnardo’s, email: VoiceAndInfluence@barnardos.org.uk

Case studies

We know from talking to people within different ICSs that real-life examples are really helpful to understand how these things work in reality. Here are four case studies developed by Barnardo's

Case study 4

Working Alongside Young People to Tackle Health Inequities Through Partnership

Case study 1

Transforming Youth Engagement in Tackling Health Inequalities in Bristol, North Somerset, and South Gloucestershire

Case study 2

Case study 3

Enhancing Youth Engagement in Improving Young People’s Healthcare in the Black Country

Amplifying Young People’s Voice in Frimley ICB’s Strategic Decision-Making

Case study 1

Transforming Youth Engagement in Tackling Health Inequalities in Bristol, North Somerset, and South Gloucestershire

How our Barnardo’s HYPE (Helping Young People Engage) Team engaged young people in addressing health inequalities and improving the quality of local health services for young people.

Across Bristol, North Somerset, and South Gloucestershire, health inequalities mean that many children and young people face significant barriers to care. One of the most urgent issues is the disparity in how Black and Brown young people access support services. These young people are ten times more likely to be referred to Child and Adolescent Mental Health Services (CAMHS) through involuntary routes, such as social services or the youth justice system, compared to their White peers. These groups are also underrepresented in children’s services but overrepresented in adult services, highlighting systemic failures in early intervention.

Neurodivergent young people often face lengthy waiting times for assessments and limited support within educational settings. Similarly, care-experienced young people report challenges related to trauma, stigma, and inconsistent health services during critital transition periods. These issues highlight the urgent need for targeted support to close these gaps effectively.

What we learnt - top tips!

How we did it: domains in action

What we did

Case study 1

Transforming Youth Engagement in Tackling Health Inequalities in Bristol, North Somerset, and South Gloucestershire

Barnardo’s HYPE Team was approached by the Children’s Community Health Partnership, Avon & Wiltshire CAMHS and the Integrated Care Board (ICB), to help shape a model for directly engaging young people in tackling health inequalities.

What we did

Barnardo’s worked in genuine partnership with the ICB: our HYPE Team building trusted relationships with young people and decision-makers, and the ICB listening and responding to young people’s voices and experiences and embedding them into their strategy and commissioning. We developed three Young People’s Health Councils (YPHCs) which created opportunities for young people to campaign, co-deliver training, and have direct involvement in health decision-making, and much more!

What we learnt - top tips!

How we did it: domains in action

Case study 1

Transforming Youth Engagement in Tackling Health Inequalities in Bristol, North Somerset, and South Gloucestershire

How we did it: domains in action

Organisational culture, resources, and infrastructure

Opportunities for engagement

Quality, feedback, and impact

What we did

What we learnt - top tips!

Case study 1

Be flexible, adaptable and open We’ve found that authentic youth engagement is a relationship that requires care and nurturing – it’s not ‘just’ a process. Young people are more likely to disengage if they feel the agenda is imposed upon them – ‘read the room’ and shift priorities accordingly.

What we learnt - top tips!

Transforming Youth Engagement in Tackling Health Inequalities in Bristol, North Somerset, and South Gloucestershire

Build trust, patience and consistency Creating a safe space involves checking in with participants, offering various ways to express themselves, and ensuring inclusivity, often through pre-meetings and culturally sensitive facilitation. Informal engagements, such as conversations over meals or games, are more effective than formal ones. Providing regular feedback to young people demonstrates respect and accountability, which helps young people feel valued.

Focus on confidence and empowerment Equipping young people with the confidence, language and skills to address sensitive topics, like microaggressions and cultural insensitivity, helps them feel empowered to challenge professionals, participate in panels, and influence service design.

Case study 2

How we did it: domains in action

What we did

Case study 2

Enhancing Youth Engagement in Improving Young People’s Healthcare in the Black Country

How Barnardo’s worked with an ICB in central England to understand how to engage young people in their strategic decision-making and service planning.

The Black Country is one of the most deprived areas in England, with higher-than-average infant mortality and child hospital admissions for conditions like asthma and epilepsy, and significant levels of childhood obesity and poverty. The Black Country Integrated Care Board’s (BCICB) five-year Joint Forward Plan includes a commitment to develop and implement a model for listening to and acting on the voices of children and young people.

What we learnt - top tips!

How we did it: domains in action

What we did

Case study 2

Barnardo’s worked with BCICB to help them assess and better embed children and young people's voices into healthcare planning and delivery, aiming to foster a system that truly reflects their needs and experiences. We completed a review of current youth engagement practice locally and nationally, to learn from other ICBs and organisations, as well as engaged directly with children and young people, to develop a plan and model for young people’s engagement across the Black Country region.

Enhancing Youth Engagement in Improving Young People’s Healthcare in the Black Country

What we did

What we learnt - top tips!

How we did it: domains in action

Case study 2

How we did it: domains in action

Enhancing Youth Engagement in Improving Young People’s Healthcare in the Black Country

Leadership buy-in, commitment and vision

Opportunities for engagement

Quality, feedback, and impact

What we did

What we learnt - top tips!

Case study 2

What we learnt - top tips!

Enhancing Youth Engagement in Improving Young People’s Healthcare in the Black Country

We provided BCICB with a set of clear recommendations to take forward, to better embed children and young people’s engagement in their work. Actions underway include:

• Developing a clear, strategic framework for children and young people's voice and influence, supported by senior leadership and dedicated resources.
• Establishing a Black Country CYP Voice & Influence Network to facilitate multi-agency collaboration and share best practice.
• Implementing youth-friendly communication channels, including digital platforms, to enhance engagement and feedback mechanisms.
• Co-producing training and resources to empower young people and professionals to participate effectively.
• Celebrating successes and sharing stories of impact to motivate ongoing involvement and demonstrate tangible change.

Case study 3

How we did it: domains in action

What we did

Case study 3

How Barnardo’s worked with an ICB in South East England to create opportunities for young people to directly shape and influence their strategic decision-making and be involved in governance structures.

Amplifying Young People’s Voice in Frimley ICB’s Strategic Decision-Making

Frimley Integrated Care System (ICS) commissioned Barnardo’s to review how children and young people’s voices could be meaningfully embedded within its governance structures. The review set out to identify best practice, gather insights from stakeholders and young people, and recommend a model that would ensure CYP influence was central to decision-making across the ICS.

What we recommended: domains in action

What we did

Case study 3

Amplifying Young People’s Voice in Frimley ICB’s Strategic Decision-Making

What we did

Over a short period of time, we conducted:

• 21 stakeholder interviews with professionals working directly with children and young people.
• Reviewed 50 reports and documents, informed by the views of 128 young people and 264 parents/carers across Frimley, alongside wider survey data from nearly 32,000 children and young people nationally.
• A comparative analysis of six governance models across health and VCSE sectors.
• A desktop review of Frimley’s geography, demographics, and existing governance structures to identify opportunities.
• This process created a rich understanding of both the barriers and opportunities for youth engagement in governance, and ensured the final model was shaped by children and young people’s realities.

What we recommended: domains in action

Case study 3

What we recommended: domains in action

Amplifying Young People’s Voice in Frimley ICB’s Strategic Decision-Making

Organisational culture, resources and infrastructure

Opportunities for Engagement

Case study 4

What we did

Case study 4

How Barnardo’s have worked alongside three ICBs to tackle health inequalities among children and young people in England.

Working Alongside Young People to Tackle Health Inequalities Through Partnership

Health systems across the UK face significant challenges in addressing the needs of children, young people, and families, with notable disparities in health outcomes and inequalities. Many health issues originate in childhood, influenced by social determinants such as living conditions, education, income, and the environment. These factors, often rooted in structural inequalities, shape health trajectories from birth and beyond, emphasising the importance of equitable access to quality healthcare and social services.

Despite the availability of healthcare, many young people and families encounter barriers like long waiting times and gaps in mental health support, leading to preventable illnesses and increased system costs. The rising number of children living in poverty – expected to reach 5 million by the end of the decade – exacerbates these issues, especially as targets to reduce child poverty have been discontinued. Addressing these challenges requires a comprehensive approach that tackles social determinants and ensures timely, accessible support for vulnerable populations.

What we learnt - top tips!

How we did it: domains in action

What we did

Case study 4

The Children and Young People’s Health Equity Collaborative (CHEC) is a partnership initiative between Barnardo’s, the UCL Institute of Health Equity and three Integrated Care Systems (ICSs) - Birmingham and Solihull, Cheshire and Merseyside, and South Yorkshire - to shape the way ICSs create health and address health inequalities among children and young people.

Working Alongside Young People to Tackle Health Inequalities Through Partnership

What we did

The CHEC used data and insight to understand the challenges facing children’s health at a local level, which informed the development of a Child Health Equity Framework to underpin action for achieving greater health equity for children and young people. Traditional approaches to health improvement have frequently overlooked the importance of involving young people directly in decision-making processes, and so for the CHEC, we involved young people as active participants in shaping the programme and the Framework itself.

What we learnt - top tips!

How we did it: domains in action

Case study 4

How we did it: domains in action

Working Alongside Young People to Tackle Health Inequalities Through Partnership

Opportunities for Engagement

Partnerships and community relationships

Quality, Feedback, and Impact

Hear directly from our Health Equity Champions in our CHEC videos.

What we did

What we learnt - top tips!

Flexibility is key: “Flexibility has been key and central to getting the voice of the young person, not one approach suits all. We piloted engagement activities to help CYP engage with, to learn what works and doesn’t work.” – ICS Engagement Lead

Case study 4

What we learnt - top tips!

Working Alongside Young People to Tackle Health Inequalities Through Partnership

Where you engage young people makes a big difference to how successful the engagement is overall: “A key lessons learned…was that the location of an event really affects the anticipation of engagement style e.g. when we hosted at a football ground the CYP expected sports-based activities. Therefore the creative activities we had planned were jarring and impacted engagement. We also realised that having only one style of engagement e.g. all creative, was a barrier in itself for some CYP, even if it suited others more, we needed more of a variety.” – ICS Engagement Lead

Young people DO want to talk about health inequalities and improving health care – we just have to ask them in the right way, through the right opportunities: “Being able to share the platform with other Health Equity Champions alike has been really empowering as we are also committed, motivated and passionate about changing and improving the lives of other children and young people.” – Health Equity Champion

Engagement through ad-hoc and digital opportunities is also important and can be a good way for more live time and speedy feedback: “We use a WhatsApp group to keep in touch with the young people involved, and we also reach out to them 1:1 to check in. Sometimes the opportunities are remote e.g. designing a logo, sometimes online e.g. the framework, and sometimes in person.” – ICS Engagement Lead

How we did it: domains in action

What we did

The Children and Young People’s Health Equity Collaborative was a Barnardo’s-sponsored collaboration with the Institute of Health Equity and three Integrated Care Systems – NHS Birmingham and Solihull, NHS Cheshire and Merseyside and NHS South Yorkshire. We would like to acknowledge and thank all of the partners, especially our Health Equity Champions, who have generously given their time and expertise to this programme. A heartfelt thank you to all the young people and colleagues from the Barnardo’s HYPE service and to those involved in the Black Country and Frimley ICB partnerships.

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A self-assessment tool and improvement framework designed to support Integrated Care Systems’ engagement with people and communities, through a whole-system approach to embedding meaningful engagement and reducing health inequalities. This toolkit predominantly focuses on the adult (18+) population.

Partnerships and community relationships

An essential part of the CHEC’s success is the way each ICB, with Barnardo’s support, built strong partnerships with local services, schools and Voluntary, Community, Social and Enterprise (VCSE) organisations. This included commissioning local support to reach more young people from communities who are less-heard and underrepresented. In South Yorkshire, for example, the Children and Young People’s Alliance commissioned a local organisation, Chilypep, to support the voice and influence of children and young people in health and wellbeing strategies and services, and be empowered to challenge health inequalities. They also developed a Community of Practice, bringing together a network of participation workers from across South Yorkshire, to amplify the voices of young people. This culminated in a regional conference co-produced with young people named ‘Breaking Cycles’, which brought together over 100 young people and 100 decision-makers from across the region. And in Birmingham and Solihull, they thought really ‘outside the box’ to reach young people they would otherwise struggle to reach: “We found that with any work with CYP, working with schools is challenging due to their lessening capacity. So as an Alliance we explored lots of options, but the best way was knowing trusted contacts in the schools – for us that was the community football club!” – ICS Engagement Lead

"If I could tell decision-makers one thing about young people’s health, it’s to please listen to us as young people. We know what we want out of our care, and having a voice to say what those barriers are and how we would get more out of healthcare, will greatly improve our ability to have a better life." - Ester, Health Equity Champion

The PCREF empowers organisations to improve access and experiences of services and improve outcomes for Black and Minority Ethnic communities. This mandatory framework aims to support service providers in their journey to becoming actively anti-racist organisations in three main domains: Part 1: Leadership and Governance Part 2: National Organisational Competencies Part 3: Feedback Mechanism – this component seeks to embed patient and carer voices at the heart of the planning, implementation and learning cycle. The active involvement of children and young people is essential to the development, implementation and evaluation of PCREF.

The knowledge and experiences...

of children, young people, their carers and families, whether or not they are patients or living with ill health, will strengthen services at their core. Their insights help ICBs ensure the right support is commissioned at the right time, in the right place.

Participation itself builds knowledge and confidence...

to make informed choices, support others, and understand how services work. This benefit applies to all children and young people, not only those receiving care, and it contributes to stronger services and better outcomes for future generations.

Anti-oppressive Dismantling systems of oppression and discrimination based on race, gender, sexuality, class, ability, and other intersecting identities. Challenges power imbalances and advocates for equity by actively addressing systemic injustices embedded within institutions and society.

Opportunities for Engagement

We were clear that our work must involve children and young people themselves. Building on our existing trusted relationships with local children, young people, families, and communities, alongside the ‘desktop’ review, we:

• Conducted a large-scale survey completed by 3,709 young people aged 3–25.
• Facilitated focus groups with 72 young people, including school pupils, youth groups, and young people with special educational needs and disabilities.

Quality, feedback, and impact

Young people’s input and engagement has led to tangible changes to local health services, including the redesign of the CAMHS website; introduction of ChatHealth, a new text service for young people; recruitment of new CAMHS workers to connect with diverse communities; adoption of the Portsmouth Tool to provide earlier help for neurodivergent young people; creation of a dedicated nurse role to support care leavers; and the development of a new transition service for 16–18 year olds. There has also been a deeper, cultural impact. Leaders described the value of spending time alongside young people, gaining insights that shaped their thinking long after the sessions ended. Conversations at youth-led workshops often had more influence than formal consultation reports.

“I’ve learnt quite a lot during my time as a Health Equity Champion. The main thing I learnt very early on was how much people want to come together to help children and young people. I think at first, I was worried it would be, sort of, a token, to just have children and young people there to show that they were included. But I learnt very early on that we weren’t just there to be seen, we were there to be heard and we could talk to people and they took it on board.” - Nel, Health Equity Champion

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Lays out expectations for Integrated Care Systems (ICSs) to develop and deliver inclusive engagement strategies to ensure people and communities are heard and shape decision-making and service provision – which includes children and young people.

Partner agencies commit to valuing youth input and integrating it across service planning and delivery.

Quality, Feedback, and Impact

Using the CHEC as a vehicle, two of the ICBs created new frameworks for CYP voice and influence which included a set of ‘quality principles’ to make sure everything they do is consistently excellent and inclusive. They asked young people and decision-makers along the way, too. Young people reflected feeling valued through their involvement: “It felt good to be taken seriously!” – Health Equity Champion “We’re actually seeing changes happen!” – Health Equity Champion In one area, one of the Health Equity Champions was specifically recruited to focus on helping to create a local CYP voice and influence framework: “I think that's been really positive. The fact that they can talk about this framework now and what they've said is they can talk through this framework because they feel confident in this framework. And they've helped shape what the language is within that as well which I think is really important” – ICS Engagement Lead

Anti-racist An active consideration of thinking, behaviour and expressions which lead to actions that transform societal, organisational and workplace inequities based on race or ethnicity.

Quality, feedback, and impact

The feedback from young people highlighted clear challenges but also constructive ideas for change: Access and equality: 93% said accessing healthcare was not easy. 92% said they did not feel everyone had equal access. Being listened to: 80% said they were not always listened to in health appointments. 70% said they lacked confidence to speak to a professional without a parent present. Relationships with staff: 85% agreed that healthcare workers should be compassionate. Many asked professionals to “listen to us,” “ask us questions,” and “make us feel comfortable.” Opportunities to participate: 88% agreed it was important that their views are heard by decision-makers. 74% said they would be interested in joining a group to improve local health services. “Most young people won’t go to healthcare professionals because they do not feel like they are listened to.” – young person “Our input can help decision makers better meet our needs. We are the leaders of the future, and our voices should be valued and nurtured.” – young person

CYP are supported to express their views to those responsible for making decisions that have an impact on their lives.

Representation

CYP are supported to express dissatisfaction or concern.

Complaint

CYP are supported to express praise, thanks or appreciation.

Compliment

CYP work with us in the ideation, conception and strategic planning of projects, products and services.

Co-creation

CYP work with us to design AND implement (‘produce’) projects, products and services.

Co-production

CYP work with us to design projects, products and services.

Co-design

CYP work with us to evaluate projects, products and services.

Co-evaluation

"The Collaborative (CHEC) has helped me, and other young people, drive forward change. It has been empowering to express what changes would be really meaningful and for decision-makers to take on board our contributions." - Ester, Health Equity Champion

Places expectations on ICBs to evaluate, co-design and engage with people and communities, and ensure feedback mechanisms are embedded in resource allocation and evaluation. This includes children and young people, and their families.

A guide and set of quality standards for ‘young person friendly’ services, intended to improve the experiences of young people in relation to both the quality of and access to the health and wellbeing services, and reduce inequalities.

An international rights-based sets of standards which aim to ensure that the short and long-term physical, emotional and psychological wellbeing of children and young people are of central importance in any decision-making for procedures or procedural practice. The standards sits alongside a set of co-designed audit tools.

Opportunities for engagement

We recommended to Frimley ICS a 'mirror’ board model, centred on a CYP Health Jury.

This group would provide youth-friendly oversight of the ICS CYP Transformation Board, with two young people from each Place ensuring representation across a wide range of backgrounds, including care-experienced, minoritised ethnic groups, LGBTQ+, Special Education Needs and Disabilities, young carers, and those who are not in employment, education or training (NEET).

The model combines:

• Proactive engagement: monthly meetings where young people consult peers, identify solutions, and feedback to the board.

• Reactive engagement: quarterly CYP Health Juries to assess board decisions and strategic priorities, providing critique and feedback.

• This dual approach balances power between professionals and young people, ensuring CYP influence is embedded at every stage of governance.

A toolkit for system leaders to inform future spending on health inequalities and support implementation of high-impact changes within Integrated Care Boards to address health inequalities.

CYP are asked for their views at specific, ONE-OFF points during a project or service journey, which are taken into account and given due weight when decisions are made that affect them.

CONSULT

CYP are asked for their views on an ONGOING basis, which are taken into account and given due weight when decisions are made that affect them.

PARTICIPATE

Giving agency to children and young people...

regardless of their health status, empowers them to share their real experiences, thoughts, views and vision. This helps build authentic, long-term partnerships and stronger community assets.

Opportunities for engagement

Central to our success is creating spaces where young people lead conversations and influence decision-making. We established three young people-led health councils : The Young People’s Mental Health Council work alongside CAMHS leaders. So far they have campaigned for mental health support in schools and universities, co-designed services for 16–18 year olds, and contributed to the redesign of the CAMHS website. The Neurodivergent Voice Council partnered with the Autism Hub and the ICB to ensure that the perspectives of autistic young people and those with ADHD informed service development. And in 2024, they produced a film sharing their experiences, particularly around waiting lists and their impact. The Black & Brown Minds Matter (BBMM) Council focuses on improving the mental health of Black and Minoritised Ethnic young people. Their work explored how young people access services, the quality of their experience, the importance of cultural understanding, and the role of intergenerational conversations. In 2024, the group produced a film to highlight the importance of cultural competence within mental health services. “The voice and influence work with the Barnardo’s HYPE team has awarded me amazing skills… I’ve become so much more confident and self-assured. This work prepared me to thrive in professional environments from a young age” – Young person, member of one of the YPHCs

Inclusive Ensuring each child and young person is treated fairly and with respect and feels valued for exactly who they are. Creating the conditions in which children and young people can truly feel they belong.

Statutory guidance which sets out expectations and principles for involving people in the design, delivery and improvement of services – which includes children and young people.

Organisational culture, resources, and infrastructure

Our approach centres around sharing decision-making and leadership with young people, going beyond just consultation (although this is important too). The YPHCs designed and led their own events, engaged with decision-makers and guest speakers, and created interactive training and workshops on their own terms. Our HYPE Team also supported young people to be involved in governance structures, through a ‘Shadow Board’ set up to give them direct influence over ICB decision-making. System leaders attended young people-led sessions, listening and learning in environments where young people felt comfortable. This ensured decision-makers were exposed to authentic and unfiltered lived experience. “We joined CAMHS quality and improvement which supported a strong foundation of trust and mutual respect. Together we developed an ongoing project of substance ensuring it wasn’t tokenistic, provided the opportunity for clinicians and young people to create real positive change; working towards better access, experiences and outcomes for Black and Brown young people. there are also now mechanisms in place for the young people to keep check and hold professionals to account on progress and development” – Barnardos HYPE Team member Training delivered by care-experienced and neurodivergent young people has transformed professional practice, fostering trauma-informed and culturally competent care. Training participants consistently tell us about the lasting impact on their practice.

Organisational culture, resources and infastructure

It was recognised that meaningful engagement with children and young people can only happen with the right investment and infrastructure. This includes: A dedicated youth engagement worker with strategic oversight. Resources to cover activity costs, training, expenses, and recognition for young people’s time. An induction and development programme, with opportunities for children and young people to shadow professionals and ‘buddy’ with board members. Training for ICS leaders to ensure they are equipped and committed to working in partnership with young people.

Good infrastructure creates safe, inclusive environments and equips staff and systems to enable youth expression.

Feedback loops and service improvement processes show how youth views have been listened to and used.

Opportunities for Engagement

Central to the development of our Framework has been the engagement of young people themselves. This has been through two main ways: We consulted over 300 children and young people across the three ICS regions to learn more about what health means to them, sharing their lived experience and the factors which influence their lives and wellbeing. The findings from this have been incorporated into the Child Health Equity Framework. Each of the ICSs involved recruited a group of Health Equity Champions – all volunteers – to guide and shape the CHEC programme on a local level. This was led by local leads in each area, with expertise and support provided by Barnardo’s Voice and Influence Team. “I think at first I was worried it'd be sort of a token to just have children and young people there to show that they were included. But I learnt very early on that we weren't just there to be seen, we were there to like to be heard and we could talk to people if they took it on board” – Health Equity Champion “Being part of this collaboration has confirmed to me that young people have a place in decision making” – Health Equity Champion Each area was at a different starting point, too. For example, for one ICB, it was the first time they had worked directly with children and young people. We supported them to get going, starting with a small group of five young people who were actively involved in the local delivery of the CHEC. Whereas in another ICB, they had already begun embracing young people’s involvement prior to joining the programme: “The Health Champions played a crucial role in reviewing a set of principles designed for professionals working with neurodiverse children, young people, and their families. These principles aim to provide a consistent framework for support, ensuring that all individuals receive the understanding and tailored assistance they need. Throughout the review process, young people actively contributed their unique perspectives and experiences, which enhanced the relevance and effectiveness of the principles.” – ICS Engagement Lead

A toolkit designed with young people, for young people, to provide information as well as ideas and inspiration about how young people themselves could work on health inequalities in their local area. It’s a toolkit focussing on local ‘youth social action’, rather than the participation of young people in decision-making.

Places a legal duty on Integrated Care Boards (ICBs) to involve patients, carers and the public in service planning, delivery and development – this includes children and young people.

Statutory guidance which sets out expectations and principles for involving people in the design, delivery and improvement of services, which includes children and young people.

Trauma-informed Trauma can be defined as having experiences that are physically or emotionally harmful and that have lasting adverse effects. This can happen to anyone. The principles of trauma-informed care are: Safety, Trust, Voice & Choice, Collaboration & Connection, Power sharing & Vulnerability, Cultural Humility and Wellbeing & Self Care

At Barnardo’s, we know that practice and social terms can mean different things to different people. For this toolkit, we set out clear descriptors to explain what we mean. The definitions shown here guide our work and will be used throughout the toolkit to provide a shared understanding.

The collective term we use at Barnardo’s to describe the different ways we support, listen to and respond to the voices and lived experiences of children and young people (CYP).

Voice & Influence

Leadership buy-in, commitment and vision

The BCICB leadership were committed to better hearing, listening to and acting on the voices and experiences of children and young people. They asked us to:

• Work with the voluntary sector to gather feedback and review current practice, using our established local networks and existing frameworks and toolkits.
• Engage with key partners in the Black Country to understand what is currently already in practice and what could be shared through our established relationships and partnerships.
• Deliver a number of engagement events to develop a plan and model for child and youth engagement within the ICB across the region.

The PSIRF is the NHS’s new approach to review patient safety incidents, replacing the previous Serious Incident Framework. Its primary aim is to promote learning and drive improvement to enhance patient safety. A key principle of the PSIRF is compassionate engagement with patients and the public. Children and young people should have a clear say on how care is provided. We recommend that you seek to include the views of children and young people in your recruitment of patient safety partners.

Opportunities that enable young people to participate, speak out, and be heard through structured platforms.

"It’s often thought about that actually young people want to take over the world, and we don’t. We just want an equal platform to be a part of those really big policy-making, decision-making processes" - Nahida, Health Equity Champion

Embedding the voices and lived experiences...

of all children and young people, not just those in treatment, into core decision-making leads to better, more equitable decisions that make a positive difference and help close the gap in health inequalities.

Leaders ensure young people’s voices are heard, taken seriously, and used to inform decisions and strategy.