For the last two years AYPH has worked with the NHS Complications from Excess Weight (CEW) clinics focusing on understanding the perspectives of young people and their families. We are delighted to share a rich set of feedback from over 60 young people and more than 100 parents and carers following a programme of engagement work including events in each NHS region in England.
In this blog we share some key messages from the report alongside reflections from young people and clinicians on the importance of this work and how it can be used moving forward
Children, young people and families affected by excess weight experience huge societal stigma. Whilst there is recognition that understanding the perspectives of children, young people and families affected by excess weight is important, a lack of time, resources and participation skills and a sense that children and young people don’t necessarily want to engage are common barriers to meaningful participation work. The patient voice programme run by AYPH has run alongside the development of the CEW clinics to ensure that this is part of the conversation from the outset.
Our work has highlighted the importance of an approach to delivering CEW clinics which is person centred with ongoing structures for youth and family participation built in. Young people and parents we spoke to were clear that having warm, supportive and friendly staff is essential. The positive relationships young people were able to develop with youth and family workers was particularly appreciated and supportive of ongoing access to health services. Our CEW youth advisors highlighted the importance of being heard, being responded to with kindness and for those working with them not to assume they understand the complex barriers they face. To help support this the report includes four constructed patient stories to help clinics think through how they can better support young people and their families.
Building supportive peer relationships with each other also seemed key to supporting CEW interventions for young people and parents. For many we spoke to, this was the first time they had had the opportunity to meet with other young people or other families affected by excess weight. Longer term such work has the potential to reduce the sense of isolation young people and families experience and increase opportunities for peer support. As well as support from their peers our four youth expert advisors appreciated the opportunity to make things better for other young people like them – a sentiment which was echoed by young people we met in engagement sessions.
Due to the stigma they face, young people and their families can be fearful about engaging with CEW clinics and attending engagement events – in a pull out section of the report young people and parents share their messages to other families in the hope of supporting their access to support. A CEW clinician reflecting on the report as part of the reviewing process highlighted how this type of resource can really support clinics and those attending them.
We would like to thank all the young people, families and CEW clinics who contributed to this work. You can access the final report here where you can also access all previous publications about our engagement work with CEW clinics. For more information about the work contact us.
AYPH offers training in youth friendly health services, ethical practice and engagement and health inequalities amongst young people. We have a track record of service evaluation and development of young people’s health and wellbeing services. We are seen as experts on participation work and are regularly commissioned by other organisations to support the involvement of young people through a range of processes, from consultations about services to setting up youth governance structures.
Author: Emma Rigby
July 2024