Involvement Leaders
People with lived experience helping to improve mental health services
The Involvement Leaders are a group of 12 autistic people, people with a learning disability and family carers.
They all have lived experience of mental health hospitals.
They use their experiences to help improve mental health services and make sure people’s voices are heard.
They work with professionals to make sure people’s experiences help shape better services.
Who is the ICB?
The Integrated Care Board is the organisation that helps plan and organise NHS health services across the North East and North Cumbria.
The Integrated Care Board works with hospitals, community services and other organisations to improve health and care.
The Involvement Leaders work with the ICB to make sure people with lived experience have a real say in how mental health services are planned and improved.
What is IPQT?
Inpatient Quality Transformation is work to improve mental health hospitals.
It aims to make services:
- Safer
- Better
- More respectful
- Less restrictive
It also looks at helping people leave hospital when they are ready and making sure their rights and experiences are listened to.
What do the Involvement Leaders do?
They:
- Share their experiences.
- Speak up about what needs to change.
- Help improve safety and people’s rights.
- Work with professionals to find better solutions.
- Help create guidance and resources.
- Make sure people’s voices lead to action.
Our journey so far
The Involvement Leaders started in March 2022.
They have:
3 years working together
220 hours spent in meetings
1,200 professionals have heard their experiences
They have helped make changes to improve mental health services.
Involvement Leaders
A strong voice for people with lived experience of mental health hospitals
The Involvement Leaders are a group of 12 autistic people, people with a learning disability and family carers with lived experience of mental health hospitals.
They work alongside Inclusion North and the North East and North Cumbria Integrated Care Board (ICB) to make sure lived experience is at the heart of improving mental health inpatient services.
Who is the ICB?
The Integrated Care Board (ICB) helps plan and organise NHS health services across the North East and North Cumbria.
The ICB works with NHS services and other organisations to improve health and care across the region.
The Involvement Leaders provide an important link between people with lived experience and those making decisions about mental health services.
What is IPQT?
Inpatient Quality Transformation (IPQT) is a programme focused on improving the quality, safety and experience of mental health inpatient services.
The work includes:
- Making sure people feel safe and respected.
- Reducing restrictive practices.
- Supporting people to leave hospital when they are ready.
- Improving people’s experience of inpatient care.
- Making sure people’s rights and voices influence service improvement.
The Involvement Leaders work alongside the IPQT team to help make sure these priorities are informed by real experiences of using mental health services.
What do the Involvement Leaders bring?
The group brings knowledge and experience that cannot be gained from data or reports alone.
Members share what it is really like to experience mental health services and help professionals understand:
What is working well?
What needs to change?
What would make services better for people?
They do more than provide feedback. They challenge, influence and co-produce with professionals to help create meaningful change.
Our journey
The Involvement Leaders were established in March 2022, building on the previous Confirming Challenge group, which had worked for seven years.
Since then, the group has:
- Contributed more than 220 hours through meetings and involvement activity.
- Shared their experiences with more than 1,200 professionals.
- Influenced policy and practice.
- Contributed to guidance around inclusion and human rights.
- Taken part in recruitment and interview panels.
- Created resources to safely share lived experience.
Our strategic role
The Involvement Leaders provide the ICB with an established and trusted route for lived experience to influence system change.
Their role is to:
- Inform IPQT planning and priorities.
- Bring lived experience into strategic discussions.
- Work with IPQT task and finish groups.
- Co-produce guidance and practical resources.
- Engage with other people using mental health hospitals.
- Help identify barriers and opportunities for improvement.
- Support the ICB to understand the impact of its decisions on people’s lives.
- Help hold the system to account for its commitments.
From listening to change
Our approach is:
Listen
Hear people’s experiences.
Understand
Identify themes, barriers and priorities.
Co-produce
Work together to develop solutions.
Influence
Use lived experience to shape plans, policy and practice.
Evaluate
Look at what has changed and what still needs to improve.
The aim is to make sure people with lived experience are not simply consulted about change, but are active partners in creating it.
