Get Your Rights – involving young people in developing health information
Name of resource, service or project: Get Your Rights http://www.getyourrights.org/
Other associated project resources include Children and young people’s views on the NHS Constitution and Understanding Your Rights in the Health System .
Date of publication: November 2015 and June 2016
Format of the health information: Website and Resource Toolkit
What is the purpose of this piece of health information?
To improve children and young people’s experiences and outcomes from NHS services by promoting their knowledge and understanding of NHS Constitution Rights.
Who is the target audience for the piece of health information?
Children, young people and the health professionals that care for them.
Background to the resource
Get Your Rights was motivated by evidence from the Children and Young People’s Outcomes Forum that children and young people were not being involved in decisions about their health and care.
The Get Your Rights project built on a short piece of work carried out by NCB in 2011 that found children and young people were not aware of their rights to be involved in decisions under the NHS Constitution.
Involving users in creating health information
Our strategy for involving children and young people in the Get Your Rights project focused on 3 elements
- Research sessions
- Co-production sessions
It was really important to use that young people’s views ran through each of these 3 elements, and through the whole project, so we recruited a disabled young researcher who had been part of the Viper research project. In addition to their research skills they had significant experience of using NHS services and brought a valuable insight
The young researcher acted as an equal partner and was paid at the same rate a adult consultants and helped the project team to design and deliver every element of the project.
The first element of the project was carrying out in-depth research with children and young people to find out their experiences of using NHS services, and what the rights in the NHS Constitution meant to them.
We carried out research sessions with over 80 children and young people between the ages of 4 and 24 across the country, focusing our recruitment on groups who are disadvantaged or disproportionate users of the NHS, including:
- Children and young people with learning disabilities
- Children and young people with long term health conditions with extensive experience of the health system
- Children and young people with mental health issues
- Children and young people with experience of local authority care
To make the sessions relevant and accessible to each groups significant alterations were made for each group, but there was a consistent approach to making the activities as engaging possible
When we spoke to these groups we found that they heard of the NHS constitution and were not clear about what their rights and felt like staff did not explain them.
This could cause additional concern and anxiety when they were using the NHS.
We have set out the detailed findings in two reports:
In our research sessions we also asked children and young people about how they would like to receive information about their rights.
Based on what we were told we have developed two resources, a website and a toolkit, both in partnership with children, young people and health professionals.
Co-production sessions (Website)
To ensure the Get Your Rights website met children and young people’s expectations and is effective in raising their knowledge of their rights we commissioned a creative design agency through a competitive tender process with clear specifications.
We then worked with the design agency to coproduce the website with 24 children and young people in 5 sessions.
These sessions covered initial concept, design and development and resource testing. They allowed us to work together to develop the website in stages, each one shaped by children and young people’s views and requirements.
Through this process young people stressed the importance of videos to tell stories and provide information in an engaging way. To achieve this we worked with a filmmaker to capture young people telling their stories about why the rights matter to them, and messages from professionals explaining why they value young people’s rights.
From initial concept to design to development, children and young people have been at the centre of the process and have helped us develop a bespoke, high quality resource that has received positive feedback from both children and young people and professionals in. This includes children and young people reporting increased knowledge about their rights and increased knowledge of their rights empowers them to feel more confident about using NHS services and being involved in decisions about their health and care.
Co-production sessions (Resource Toolkit)
In our research children and young people were clear that they wanted professionals to support them to understand their rights in the context of their local area.
To address this we adapted our research materials into a set of resources to support professionals working with children and young people explain what the rights in the NHS Constitution mean in the context of their local area, and how they can work with organisations like local Healthwatch to improve their outcomes and experiences of local services.
Before setting up a pilot programme we tested these pilot resources with children and young people with experience of mental health services at an NHS England youth participation event.
We then recruited children and young people leads for 6 local Healthwatch organizations to a development workshop to help us understand how the resources could be most effective in meeting the requirements of local Healthwatch and supporting their existing priorities while also raising awareness of NHS Constitution.
Each Healthwatch was supported to develop an individual plan setting out how they would use the resources with diverse groups of children and young people across their areas in a way that fit in with their existing strategies.
We captured learning from this pilot process to inform changes to the resource designs, and learning for national dissemination.
Each area then delivered the sessions using the workshop materials, to over 300 children and young people in total.
This has included
- Gaining feedback from children and young people using CAMHS in Brighton as part of a service evaluation
- Being delivered to classes in local schools as part of a health and wellbeing day that raised awareness of local Healthwatch and young Healthwatch champions role in Rotherham
- Used with students with learning disability and complex communication impairments in a special school in Bristol to help understand how rights apply to them in
- Raiding awareness of rights among health and social care students in a further education college in Bury, helping them become peer supporters,
- With local youth organisations in Warkwickshire as part of a health champions programme
The Healthwatch professionals who took part in the pilot’s very positive about their participation in the project and about the resources themselves.
“The Get Your Rights cards are well received by children and young people and an excellent resource, which I would not have had the capacity or capability to produce myself, to use during workshops and events for children and young people of a range of ages and abilities. The resources are particularly useful as they can be used with small or large groups and during sessions of varying lengths.” Healthwatch Children Lead.
“They’ve been brilliant for us, the resources and ideas, I’ve just had to go and deliver them but all work’s done for you.” Healthwatch Engagement Officer
By bringing together expert knowledge, evidence from our primary research, a creative design agency and the voice and experiences of children and young people themselves, our coproduction process has resulted in high quality, innovative health information materials.
Working in partnership with local Healthwatch organisations to successfully pilot the local area materials allowed us to gain insight into the strengths and weakness of the original workshop materials and adjust them before making themavailable to local Healthwatch organisations and other information and advocacy organisations like Information, Advice and Support Services.
You can find about ordering the resources http://councilfordisabledchildren.org.uk/nhsconstitution or contact Andrew Fellowes Afellowes@ncb.org.uk.
Think about the best way of involving children and young people for different elements of your project. The nature of our project meant we decided to recruit the disabled young researcher into a paid position rather than convene a steering group. This was a big step for us but made a positive impact to the project, giving consistency across the research sessions, the co-productions sessions.