How expert by experience leadership is transforming experience for young people in North Central East London Children and Young People’s Provider Collaborative
Working with young people, their families and carers has been an important principle for the NCEL CYP PC since the beginning. The PC, made up of North London providers of CYP inpatient services, recognises and values the unique insight and experience that young people, their families and carers can bring to senior management discussions about ways to improve the quality of care people receive. The NCEL CYP PC is still in its infancy but working as a Provider Collaborative has already given the trusts in North London the opportunity to work much closer together to share learning and drive up quality of care consistently across the whole area the Provider Collaborative covers.
NCEL CYP PC has been committed to working in partnership with young people, their families and carers since the beginning, starting with developing the PC’s initial business case. During the early development stages, NCEL PC recruited young people with different experiences of mental health services to review and advise on its development. As well as providing constructive feedback, the young people advised on the areas the evolving NHS-Led Provider Collaborative should focus on and represented the PC during the business case approval panel, which was led by NHS England. The young peoples’ involvement was crucial to NCEL CYP PC being fast tracked to becoming one of the first CYP PCs to launch in England in October 2020.
Following the selection panel, partnership working with young people was key in supporting the PC’s launch. Young people, families and carers were involved from each trust within the PC to keep participation on the agenda during a very busy period of change. Each trust within the PC was at a different stage of embedding expert by experience participation and leadership, so the trusts worked together to support each other to recruit young people, families and carers. Working collaboratively, each trust within the PC reached out to one another to share leads and built up a network of participation leads and young people who were interested in working with the collaborative. Young people, families and carers helped the NCEL PC team to develop their plans for improving access and experience of care for local people across the area that the PC serves. Working collaboratively, NCEL CYP PC identified areas that were important to young people and their families that needed to be focussed on. For example, young people and their families identified a need for A&E staff to better understand how to support a young person in crisis.
Since the launch of NCEL CYP PC, young people continue to be instrumental in the leadership of the PC. A core group of young people between 16 – 21 years old, known as Participation Champions meet with NCEL’s PC Participation Lead monthly to discuss ongoing or upcoming work programmes. The executive management team brings initiatives to the group to gather their feedback and also asks for formal input into their development. This way of working is crucial to better understanding how the units within the different trusts can be transforming their services to improve people’s experience. As a result of this way of working, young people are leading projects within a number of workstreams across NCEL CYP PC.
An example of one of these projects is the development of a Quality Assurance Framework. Young people led on researching service user experience of care and conducted an environmental assessment of the wards. For the environmental assessment, the young people and families used a process based on the 15 Steps Model, which has been adapted for CYP inpatient units by the PC’s service users and families and which focuses on areas that have been chosen by young people and families. To better understand service user experience, the PC’s Participation Champions devised a set of 15 questions in collaboration with a wider group of young people to ensure the questions were accessible. The Participation Champions spoke to young people on the wards individually and took them through the questions to make sure they understood what was being asked and why. The results from both projects were collated to create a summary report with recommendations that was included into the final report on the development of the Quality Assurance Framework.
In addition to leading projects on behalf of NCEL CYP PC, a Participation Champion co-chairs the strategy board meetings which take place three times a year between the CEOs of all the trusts within the Provider Collaborative. As well as holding the CEOs to account, they also ensure any content being presented is accessible and supports the aims of the Provider Collaborative to improve the quality of care and address local health inequalities.
By building networks of Participation Leads and Participation Champions across all the units that are part of the NCEL CYP PC, the Collaborative continues to ensure that everyone in the local area receives the high standard of care and support they need and deserve.
Young person A: “It has been such a privilege to partake in the NCEL Collaborative. From its infancy through to the continuous evolving establishment the Collaborative has become. I have seen myself, my colleagues and the people we care for surpass expectations both personally and professionally which is a constant reminder of why I am a part of the NCEL CAMHS Collaborative.”
Parent B: “I feel valued being a People Participation Champion. I have been involved with the PC from the start and will continue to so for as long as they need me. I have been involved in numerous projects and I feel that I have made a difference. It has been rewarding for me I have learned a lot and the leadership and the team makes it worthwhile. I stay because I want to help make a difference to the lives of young people.’’
Key statistics
Between August 2020 – August 2021, NCEL CYP PC:
- Reduced current admissions by 34%
- Reduced out of area placements by 73%
- Reduced admissions of children and young people living with autistic conditions by 50%
- Reduced the length of stay by 43%.