Optimising patient experience has long been recognised as an integral part of effective healthcare for adults. The healthcare experience of babies, children and young people has received less attention in the past, despite the legal rights of children to participate in decisions that affect them. Unfamiliar environments, and having to meet and interact with a range of healthcare professionals, can be particularly unsettling for babies, children and young people, and may lead to anxiety and distress.
Many NHS providers of healthcare services for children and young people currently carry out user surveys directly with children and young people as well as with their parents or carers, and some run focus groups to obtain feedback from children and young people and their parents or carers, with a view to improving the provision of services and the experience of healthcare. However, surveys of children and young people's healthcare experiences have identified that feedback from children themselves is generally less positive than their parents' responses, with a third of children in 1 survey reporting that they did not always understand what staff said, and over half feeling they were not involved enough in making decisions about their care or treatment.
Although there are some examples of good practice and initiatives to improve babies, children and young people's experience of healthcare, there is variation in practice across the country.
This guideline covers babies, children and young people (aged 17 and under) accessing NHS physical or mental health services, or local authority-commissioned healthcare services. Babies, children and young people are entitled to always receive the same high-quality healthcare experience, and so the recommendations in this guideline apply to all healthcare experiences and settings. For some babies, children and young people, interaction with healthcare services may be limited to visits to a dentist or GP, whereas other babies, children and young people may have medical conditions that need frequent interactions, inpatient stays and an ongoing healthcare relationship with professionals, so a personalised approach to implementation is needed.
The guideline provides evidence-based information for healthcare professionals, children, young people and their parents or carers about communication, information, support, the healthcare environment, access and continuity of care. It also provides guidance on maintaining usual activities because babies, children and young people need the opportunity to grow, learn and develop alongside their peers, despite their healthcare needs.