Healthcare in our hands: Putting babies, children, and young people at the centre of their care

Everyone is entitled to a say in the healthcare services they use and a child or young person is no different, say Aishah Farooq, Emma Beeden, and Catherine White

Accessing healthcare services can be daunting at any age, but even more so as a baby, child, or young person. Can you imagine being told life changing information and not having any idea of what’s going on? It’s a difficult and helpless position to be in, and we felt overwhelmed, anxious, and vulnerable when we experienced this as children and young people. When all your decisions are made for you, albeit with the best of intentions, and you don’t have much involvement apart from receiving the treatment, it’s easy to feel fearful and powerless. Yet everyone is entitled to a say in the healthcare services that they use and a child or young person is no different. 

The United Nations Convention on the Rights of the Child states every “child who is capable of forming his or her own views has the right to express those views freely in all matters affecting the child.” The National Institute for Health and Care Excellence (NICE) recently published guidance on Babies, Children, and Young People’s Experience of Healthcare, and this principle has been embedded throughout the guideline. By actively involving the views of children, young people, and the parents and carers of babies and young children, this guidance truly represents those who use the service and will mean it can make a real difference.

The recognition that children and young people have a right to share their perspectives is not only woven throughout the recommendations, but was also remembered all the way through the guideline development. From scope development to publication, young people with personal experiences of accessing healthcare have been involved in this guideline. 

Having personal experience of accessing healthcare gives you a unique viewpoint that is not always heard, especially if you are from under-represented groups, including those who are under 18, disabled, from an ethnic minority background, or who don’t have English as a first language. It was vital for these voices and experiences to be heard, listened to, and then put into this guidance to ensure it can improve care for as many people as possible. The guideline committee included four young people with varying levels of experience accessing healthcare (including two of us, Aishah and Emma). Having this wealth of experience to draw on meant that we were able to bring our expert opinion and real life testimonies to the guideline committee meetings, rather than just relying on examples from research or journal articles.

The guideline has formed recommendations in a broad range of areas, but we want to highlight two in particular. First, communication. We know from our experiences that often when our parents and carers are present, healthcare professionals will direct all communication towards them, even though it’s about us. This can be disempowering and risks us disengaging with our healthcare (for example, by being reluctant to access services or adhere to treatment). It’s essential that we feel included in conversations and that our preference of communication is understood.

It is so important to engage with and provide information to a child or young person in a form of communication that they feel comfortable with, whether that be through Makaton, pitching the language used at the right level, or using additional visual aids for support. It can help them feel more at ease, builds trust, and opens up more opportunities for them to be involved in their own healthcare journey.

Shared decision making is an important part of any individual’s healthcare journey—especially a child or young person’s. At this age we can have little involvement and voice in our healthcare, but shared decision making helps to position us in the centre of our care. The NICE guideline sheds light on how children and young people can be supported to make decisions, even if they’re as simple as choosing a plaster cast colour or food options on a menu. As a child and young person, we’ve both had similar options chosen for us, but when we knew what we wanted, why weren’t we asked? Being involved in simpler decisions that may not have a direct impact on our healthcare outcome can seem unimportant, however it’s crucial, because it affects our overall perception of healthcare and builds our confidence to engage in bigger healthcare decisions. It is also well known that the transition from paediatric to adult services can be a really difficult time for patients and it’s not hard to see why: how can we be responsible for our own care if we haven’t had the opportunity to learn how to do it?

As part of the evidence for our recommendations, NICE commissioned the National Children’s Bureau to run focus groups with 200 children aged 4-15 years old. To conclude, we’d like to include their voices about how they felt being involved: “Young person’s voices should be listened to, valued, and considered to ensure that the health service can be accessible to all”; “The best thing is giving our opinions and being part of something important”; “I like you listening to my views, it’s awesome!”; “I really like that it feels that you all care about my opinion.” 

Through this guideline, we saw that it was possible to fully engage with children and young people. Now it’s time to put that into practice across healthcare.

Aishah Farooq, committee member of the NICE guideline on Babies Children and Young People’s Experience of Healthcare; young governor for University Hospitals Bristol and Weston; NHS England Youth Forum alumni; NHSE public patient voice partner for the asthma workstream. Twitter @ItsAishahF

Emma Beeden, committee member of the NICE guideline on Babies, Children, and Young People’s Experience of Healthcare; NHS Youth Forum alumni; member of the British Medical Association Patient Liaison Group. Twitter @emmabeeden

Catherine White, chair of the NICE guideline on Babies, Children, and Young People’s Experience of Healthcare NICE. Twitter @cswhite100

We would also like to acknowledge support from the National Institute for Health Research (NIHR) through the Applied Health Research (ARC) programme for North West London. The views and opinions expressed by the authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR,  the Department of Health, or NICE.