Babies, children and young people's experience of healthcare

GPs will be familiar with the appearance of surgery waiting rooms stripped of the small tables piled with books and toys to occupy children when they wait for a consultation, now that Covid-19 hygiene measures have taken over. But there are many ways that a GP practice can make babies, children and young people feel comfortable. Christine Grey explores the options for healthcare services to make children feel included and listened to when attending an appointment.

A new draft guideline from the National Institute for Health and Care Excellence (NICE), Babies, Children and Young People's Experience of Healthcare, here, has just been put out for consultation and is expected to be published on 25 August 2021.

It contains guidance on how to improve the healthcare experience of this group, which can in turn improve their health outcomes and wellbeing in the future. NICE’s recommendations were mostly developed before the Covid-19 pandemic, but its committee has confirmed that the draft was reviewed in relation to Covid-19 and necessary changes have been incorporated to provide up-to-date advice.

Young people’s experience of healthcare services

The NICE committee found that the healthcare system “can be intimidating to younger patients” and said poor experiences could lead to “anxiety around engaging with the system later in life”.

It also recognised that young people can find it easier and are often more likely to look for health advice online or on social media, so advising them about which sources are reliable and trustworthy has become very important.

The guideline says various surveys have found that feedback from children themselves is generally less positive than their parents’ responses, with a third of children in one survey reporting that they “did not always understand what staff said”, and over half felt they were “not involved enough in making decisions about their care or treatment.”

NICE also found variation in practice and initiatives to improve this group’s experience of healthcare across the country.

Historically, younger patients may have been seen as more “passive” recipients of healthcare than adults but NICE stressed that supporting them to “truly understand their condition and treatment” can help them to feel more confident engaging with healthcare staff.

Aims of the NICE guideline

The guideline looks at ways of communicating with babies, children and young people in a way that is “engaging and understandable”, offering clear and accurate information that can be tailored to an individual patient’s level of maturity and understanding.

It says young people should be involved in shared decision making and should fully understand their rights and responsibilities about privacy and confidentiality, consenting to treatment, and be able to have “two-way” conversations.

The important role of parents, carers, and advocates is recognised in ensuring younger patients feel supported during appointments, as is offering the opportunity to speak in private, where appropriate, in line with current practice.

The guideline gives evidence-based information about communication, information, support, the healthcare environment, access, and continuity of care. It also provides guidance on maintaining usual activities as babies, children and young people need the opportunity to grow, learn and develop alongside their peers, despite their healthcare needs.

How the recommendations might affect practice

NICE’s recommendations may affect GPs as doctors could need more time to communicate with children and young people, and revisit their needs and preferences on a more regular basis as a child grows through different stages. This could mean some consultation times need to be longer, which would have an impact on resources for the NHS.

Additional time and resources may also be needed to support communication, for example using foreign language or sign language interpreters, and to ensure that all staff are competent to communicate effectively.

Other guidance on making services “young people friendly”

The Department of Health published the quality criteria, You’re Welcome, here, in May 2011. This is a recognised example of an assessment framework that enables NHS and non-NHS health services to evaluate how appropriate they are for young people.

The quality criteria cover 10 topic areas similar to NICE’s, including young people’s accessibility; confidentiality and consent; environment; staff training, skills, attitudes and values; and joined-up working and their involvement in monitoring and evaluation of patient experience. It also looks at health issues for young people, sexual and reproductive health services, and specialist child and adolescent mental health services (CAMHS).

An article published by the Royal College of Physicians (RCP) in 2016 in the Clinical Medicine Journal, here, found these criteria were not designed to be used by young people. It said: “they were not written from their perspective and do not use their words or criteria”.

The researchers and young people on this collaborative project focused on what they saw as the most important criteria in You’re Welcome, as well as the “gaps”, when developing themes they felt should be part of a “young people friendly” assessment framework.

The importance of doctors and nurses showing an interest in the lives of young people as patients was highlighted, and the need for professionals to be sensitive to what was going on for them, such as “not trying to change our medication just before we were about to sit exams at college.”

The framework could serve as a resource for other services to take forward with their own young people’s forums, enabling an extension of criteria and development of a more comprehensive framework that is relevant to other specific settings.

The Royal College of Paediatrics and Child Health (RCPCH) has also collaborated with the NHS Confederation to produce Involving Children and Young People in Health Services, available here.

Developing quality standards for patient experience

NICE first published the Patient Experience in Adult NHS Services Quality Standard (QS15) in February 2012, here. However, a Patient Experience Network (PEN) report published in November 2014, Improving the Patient Experience of Children and Young People, here, pointed out that NICE’s quality standard left a significant gap. It failed to address the experiences of children, young people and families or carers, and recommended prioritising further research and focus by providers and commissioners, in collaboration with the public, on improving outcomes.

This report identified issues that were particularly important for children and young people, including:

  • communication

  • involvement in decisions

  • choice and control

  • recognising the impact on mental health of treatments

  • ensuring psychological support is offered to patients and carers across the pathway

  • support during the transition from children to adult services

  • consideration of how the services would look and feel to the person using them.

This kind of research and online surveys of young people undertaken by the Association for Young People’s Health (AYPH), for the independent advisory group Children and Young People’s Health Outcomes Forum, have fed into NICE’s subsequent work on developing the guideline on improving young people’s experience of healthcare services.

Further evidence of what young people want in healthcare

A review, Children and Young People’s Views of Health Professionals in England, published in November 2010 in the Journal of Child Healthcare, here, analysed 31 research studies published between 2000 and early 2009 and found that: “Children and young people want health professionals to be familiar, accessible and available; to be informed and competent; to provide accessible information; to be a good communicator; to participate in care; to ensure privacy and confidentiality; and to demonstrate acceptance and empathy. It is noteworthy that over the nine years many studies repeated the same broad messages to health professionals.”

Subsequently, the Association for Young People’s Health (AYPH) sought young people’s views on involvement and feedback in healthcare in 2014, and the report on the results is here.

The Royal College of Paediatrics and Child Health (RCPCH) has also published analysis of data from its Children and Young People's Engagement and Health Policy teams in November 2018, and its report What Do Young People Want in the NHS Long Term Plan? here, showed their views including that the majority, at 31%, wanted to have youth-friendly services, including quick referrals, and staff trained in youth identities, such as being looked after, having a long-term condition or being an LGBT+ young person. Improved mental health support and being given skills for health also featured in the results.

The RCPCH and AYPH have acknowledged that the Government’s Long Term Plan, here, shows steps in the right direction. By 2028, the NHS in England will move to a 0–25 years service and towards service models for young people that offer person-centred and age-appropriate care.

School-age adolescents are receiving statutory health education from 2020 and measures to combat obesity have been prioritised.