Summary
CLIC Sargent's Participation Programme helps children and young people with cancer aged seven to 24 to have their say about their cancer, treatment and experiences. This helps children and young people with cancer to shape and influence CLIC Sargent’s work and the work of other providers, so that they get the support they need. In 2013 children and young people shared their views and experiences through 191 separate age and ability appropriate opportunities which have influenced our work across all departments and at all levels. Feedback shows that 100% of those who participated valued the experience and would recommend taking part to others.
Challenge
CLIC Sargent’s participation programme launched in 2009/10, and the participation strategy in 2010/11, to ensure the views of children and young people influenced the charity’s work.
The participation programme helps children and young people with cancer to have their say about their treatment and experiences. This helps them shape CLIC Sargent’s work and that of other providers, so that they get the support they need.
By providing age-appropriate opportunities for children and young people to share their views, the participation programme helps the charity meet its first objective: to understand and meet the needs of children and young people with cancer and their families.
Objectives
The project had a number of objectives, among them ensuring that participation activities are integrated, and planned and delivered appropriately. CLIC Sargent committed to measuring, understanding and reporting on participation opportunities, ensuring the effectiveness of the Children and Young People’s Advisory Group (CYPAG) in influencing decisions, and developing and promoting opportunities for children and young people to share their views and feed into decision making.
Communications were also key. Objectives including enabling children and young people’s participation through virtual and written media and supporting them through the charity's external communications. The project also undertook to ensure that their views contributed to the development of the service-user feedback.
Solution
The Participation Champions Group champions the involvement of children and young people in decision making across the charity, while the Participation Management Group ensures long-term strategic planning, leadership and engagement in participation. CYPAG allows participants to share their views and experiences through events, online and via email.
The Policy and Public Affairs team undertook research into the impact of cancer on children and young people’s lives, using the evidence to campaign for change on a range of issues. Sixteen young people became event speakers, sharing their experiences with CLIC Sargent’s donors.
Since 2011/12, CLIC Sargent has encouraged young people to be part of interview panels for youth-related posts. A user participation session is included for new staff at each national induction training event, with a young person taking part.
CYAG members attended a workshop, providing feedback on several projects. This informed how the charity will ask for feedback in future.
Results
The achievement of the National Youth Agency Hear by Right Gold Award was a significant achievement. It reflected five years of sustained development in user participation and recognised the opportunities offered to children and young people to express their views and influence CLIC Sargent’s work.
Participation activities directly influenced the charity’s work in a number of ways. For example, by placing the voices of young people at the heart of a campaign to improve access to education, employment, training and skills for children and young people with cancer, CLIC Sargent was able to influence government guidance on the education of children with serious illnesses.
Learnings
Listening to the voices of service users means that CLIC Sargent delivers services that are fit for purpose, cost effective and built on need. The team can be transparent about why they do what they do, and can support others to take the same approach.
CLIC Sargent’s participation work has been externally recognised through the Gold Hear by Right Standard. The assessor said: ‘there is no doubt that CLIC Sargent’s approach to participation work is worthy of a Hear by Right Gold Award, and the organisation and key participation workers should be congratulated for developing some truly sector leading practice. The evidence submitted for this application has been amongst the very best submitted for a Hear by Right Award to date’.
Evaluation
With just two dedicated members of staff, the User Participation Programme has had a massive impact. It galvanised the whole charity to integrate participation activities into their day-to-day work. As a result, children and young people with cancer have influenced the charity’s work across all departments and at all levels.
The participation strategy is based on best practice and piloting new initiatives, and the charity also shared its knowledge and experience with others. The participation team, for example, has been involved in the NHS England ‘Participation Academy’ and the NHS Youth Forum Reference Group.
