“Having a young person’s voice at the centre” — the impact of engagement on child health services
RCPCH &Us is the voice of children, young people, parents and carers, created to actively seek and share their views to influence and shape policy and practice. Joanna Boxall is a junior doctor who volunteered with RCPCH &Us, interviewing participants about their involvement in engagement projects.
RCPCH &Us have applied a youth social action model to set up a diverse network of projects and seek change in various exciting ways. This supports children and young people (CYP) to lead their own solutions to challenges they have identified, working together whilst developing skills for life. The projects include CYP across the UK, often in partnership with families, carers, and clinicians. Each group has a different focus, but all are united in a common commitment to improve the experience of healthcare for CYP.
Here, a selection of RCPCH &Us projects, including the Engagement Committee, the Epilepesy12 Youth Advocates, and the COVID book club, illustrate the importance of listening to CYP and ensuring their voice is heard. Through these groups, CYP are given an opportunity to learn about their rights, work with others and express their views, and become a part of offering solutions and shaping change in child health services. What one can learn from participants in these projects and the examples of changes they give, is that increased engagement leads to empowerment. The CYP involved with these projects are confident, motivated, and keen to form partnerships to make an impact; they convincingly demonstrate how engagement can be a great tool to help ensure that paediatric services reflect their needs, and ultimately improve child health. Each group has identified key issues facing CYP, and proposed ways to make changes to services and attitudes.
A group of parents and carers, young people and clinicians have formed the RCPCH Children and Young People’s Engagement Committee to promote the voice of CYP and their families in the shaping of child health services. The Engagement Committee reflected that increased engagement, whilst essential, also faces many challenges. This prompted one clinician to join the Engagement Committee, to improve communication in an authentic and impactful way. Another clinician exclaimed, “it was really frustrating to listen to this mismatch” between what CYP wanted and the service being offered. The committee felt that empowering CYP is a matter of “getting the basics right” and they hope to see “a shift towards making engagement an expectation rather than an aspiration.”
Overall, the young people reported a positive experience of their epilepsy care and the epilepsy clinics they have assessed, but found that paediatric epilepsy care at times overlooked the wider impact of the condition.
The mismatch between young people and services was also identified by young people in the Epilepsy12 Youth Advocates group. This group consists primarily of young people, some of whom have a diagnosis of epilepsy. One of the youth advocates proclaimed, “in the future, I want to make doctors aware that there’s so much more to epilepsy than just seizures.” Overall, the young people reported a positive experience of their epilepsy care and the epilepsy clinics they have assessed, but found that paediatric epilepsy care at times overlooked the wider impact of the condition. For example, one youth advocate reported fearing that his peers would make jokes about his diagnosis, and another felt that there was nobody her age who understood epilepsy. The advocates shared a hope that their work would push “more nurses and doctors [to] ask about mental health, as well as the physical health of the patient, as mental health can affect physical health and vice versa.”
The COVID book club also came to understand how one disease can have a pervasive impact, on more than just physical health. The book club is a group of young people who have been reviewing published studies to understand and highlight CYP’s experiences of the pandemic. One member spoke about the exciting challenge they faced upon realising that there were “thousands and thousands” of studies that they could review, and how this seemed to reflect the “massive impact of Covid on children and young people”. The group identified effects on “education, home life, vaccine hesitancy, mental health and everything”. They concluded that the pandemic has “take[n] over the entire lives” of many young people, and are concerned that this fact can easily be forgotten as the priority has been to avoid ‘overwhelming the NHS’. The group was clear that they don’t want to be a voice which could be overlooked. Instead, they hope to amplify the voice of young people, and enable others to better support the “physical and mental health needs of children and young people, as we come out of lockdown and move into the recovery phase of COVID-19.”
All the groups shared the conclusion that “having a young person’s voice at the centre” will lead to a more holistic, person-centred care in paediatric services.
The Epilpesy12 Youth Advocates have recently undertaken a project which involved asking epilepsy clinics to self-rate their care (bronze/silver/gold). They found that very few clinics rated themselves as gold as they were keen to improve their care and listen to feedback; the youth advocates reported that clinicians have “taken what we’ve said into account.”
…working in partnership with young people would lead to an improved understanding of their care needs, and ultimately improve services.
The Epilepsy12 Youth Advocates identified that a common subject of anxiety and an area for improvement was the transition from paediatric to adult epilepsy services. The group realised that the transition to adult services at times went undiscussed, leading young people to feel that they were “suddenly going to be moved.” They concluded that this subject should be spoken about openly with the young people, so they could prepare and make a more gradual transition, highlighting how working in partnership with young people would lead to an improved understanding of their care needs, and ultimately improve services.
The paediatricians involved in the Engagement Committee all remarked that an increased appreciation of engagement has positively impacted their own clinical practice and insisted that this would also benefit other clinicians’ care too.
The COVID Book Club also demonstrates the impact that young people can make. After studying young people’s experience of the pandemic, they have created resources and worked with clinicians to help ensure that the NHS can successfully recognise and meet the needs of CYP. The group quickly realised the immense demand for information and research, and the huge scope and reach of their work. However, they were challenged when they recognised that people “realise its importance, but just don’t use it.” Indeed, the group expressed a general concern, both from personal experience and from the reports they had analysed, that the voice of CYP was not viewed with the same regard as that of an adult.
A key message expressed by the engagement committee is that CYP will be involved at every stage of decision making, whether that is in respect to their own treatment, or on wider decisions about the running and delivery of paediatric services. The CYP involved in the RCPCH &Us projects all value the opportunity they have had to speak up and engage. However, they also recognise that this is not a universal opportunity. There are various barriers which can make engaging more difficult for some. These deterrents are manifold, and unique for each individual but might include communication difficulties, less support, lack of confidence or indeed, lack of opportunity.
Taking the time to foster a greater respect for the voice of children and young people will allow clinicians to offer more authentic and effective care.
Furthermore, the burden of illness and the strain this may put on a young person’s perceived ability to engage must always be considered. The Engagement Committee proposed the idea of a ‘minimum standard of engagement’ that must be met. This simple measure would ensure that there is no child in the UK who is not given the opportunity to engage in a meaningful and impactful way.
Sharing these insights and impacts demonstrates the powerful voice of children and young people, and the indispensability of understanding their needs and wishes. As shared by one clinician working with RCPCH &Us, CYP are “incredibly knowledgeable about what they want and need”. The investment of time and energy at the vulnerable stage of transition to adult services can empower young people, encourage them to take ownership of their condition, and lead to improved engagement with services throughout their adult lives.
Taking the time to foster a greater respect for the voice of children and young people will allow clinicians to offer more authentic and effective care. Ultimately, developing a greater understanding of how we can work together with all children and young people will maximise health and wellbeing for generations to come.