Following a break over the summer the project is now full-steam ahead, with fieldwork underway in both case studies. I’ll post more updates as things progress, but in the meantime here is a summary of ideas emerging from group discussions at the workshop on 10th July (presentations etc can be found here and a young person’s report on the day here):
A number of key ideas emerged from the discussions on what workshop participants thought needed to be in place for children and young people (CYP)’s participation to be embedded in health and social care services and settings: Integrated and integral The current changes in health and social care, and increasing interest in CYP’s participation and public involvement and engagement, were felt to provide opportunities as well as challenges. For CYP’s participation to be embedded workshop participants felt that it needs to be a routine and central part of what all health and social care services, organisations and staff do, integral to organisational purpose, structure and processes and fundamental to effective service delivery and CYP’s wellbeing. There needs to be sustainability and a commitment to consistency, rather than participation being linked to one-off projects (although such projects can be catalysts to start embedding participation). It needs to be planned from the outset and not an after-thought or add-on, with sustainable and realistic funding and resources, long-term planning and a commitment to consistency. It needs to happen at all levels including individual care, planning and delivery of services, evaluation and feedback, role development and recruitment, staff training, strategy and commissioning – incorporating participation, creativity and a listening culture into everyday work. Meaningful Embedded participation needs to be linked to what’s important to CYP, ‘not just ticking a box’ and also be planned in a way that makes it interesting, accessible and relevant to CYP’s lives. In order to make the case for participation from a clinical perspective, participants thought it should also be seen as integral to the quality of service delivery, e.g. are CYP more likely to engage with services and treatment if they feel that they’re being listened to, in a service which is seeking to meet their needs through speaking to them or their peers rather than making assumptions? Embedding participation was felt to be about getting services right through CYP being empowered to demand better care, not being dependent on professionals changing voluntarily. So a culture change in which CYP work alongside health and social care services and organisations to create more accessible and user-friendly services which better meet their needs, underpinned by a commitment by senior managers and commissioners to promoting and monitoring participation. Well-supported As well as drawing on existing resources (see ‘collaboration’ above) support, guidance and training on participation were seen as important for CYP, staff and organisations . When planning participation services and organisations also need to consider reward and recognition for CYP, including considering issues of payment, accredited training etc. Inclusive and flexible Reflecting the diversity of CYP and equality of opportunities issues identified at the start of this report, it was felt that information about participation opportunities, what will be involved and benefits needs to be easily accessible to every CYP using health and social care services, their families and those working with them – linked to school and other social and education programmes. People felt that it was important for CYP’s participation in health and social care to be flexible, with a combination of formal and informal (eg everyday conversations and feedback) participation to improve dialogue and engagement. Realistic Embedded participation should start from the grassroots – ‘start small, participation does not have to be big’. It was also felt to be important not to over-promise, even with the best of intentions, and that it was better to be honest with CYP about what can and cannot change and why, but also challenge existing structures and processes where possible and appropriate. Participants thought that health and social care organisations needed to be better at costing up and committing the time and budget necessary for the participation they are planning, and if budget is limited explore creative alternatives or look to the voluntary sector for examples of how to support participation with limited resources. Collaboration and sharing learning It was seen as important that good participation be based around collaborative working – within and across organisations and between adults and young people. Shared ownership was felt to be essential, with CYP and adults supported to work together and services and organisations being open to criticism and change. Outputs and outcomes from participation and resources and other outputs should be shared within organisations and more widely (eg online), including information by and for young people. Participants also thought that existing guidance such as ‘Hear by Right’, ‘Young People Friendly’ and ‘You’re Welcome’ and other available resources should be more widely disseminated within health and social care. Demonstrating impact It was thought to be really important to be clear about who benefits from participation, how and when – and to demonstrate that it is meaningful for all involved. In order to understand how participation is working and how it can be improved CYP’s participation should be constantly reviewed and evaluated, with input from CYP, staff and organisations. ‘It needs to be recorded, reported and fed back to service users’. It was seen as really important to be able to demonstrate the impact and outcomes of participation, with CYP and adults involved seeing that something has happened as a result of their participation and feeling that their contributions are valued. Participants said that being listened to needs to be linked to changes in service delivery, demonstrated though organisational monitoring against measures set by CYP. ‘Don’t ask the questions if you’re not going to act on the answers’ and also involve CYP in deciding what those questions should be. But health and social care organisations should also remain aware that participation is not just about outcomes and change, but also about the quality of the process and an ethic of practice and co-learning.
The full report on the group discussions is available here: Embedding CYP’s participation in health and social care services_report on 10.7.13 workshop The ideas above are the start of an on-going conversation, and I’ll be running a workshop at this conference on 17-18 October with colleagues from the Office of the Children’s Commissioner, the Royal College of Paediatrics and Child Health and Healthwatch where we’ll use these ideas to further explore the issues around embedding CYP’s participation. Further information will be posted on this blog as the project progresses. Contributions to the debate, including responses to this report, are also very welcome. I really hope this blog can be part of the collaborative process!