Recommendations

Healthcare professionals should involve children and young people in decisions about their healthcare in ways that are appropriate to their maturity and understanding. Some children and young people will be able to give informed consent themselves, some will be able to contribute to the discussion, and others may not be able to be involved at all. For more information, see NICE's information on making decisions about your care.

A parent or carer, who has parental responsibility for a child (as defined by the Children's Act 1989), will have a key role to play in planning and making decisions about their child's health and care, particularly when they are young. As children grow older and develop the maturity and understanding to make decisions for themselves, that role will diminish, particularly if the child wants it to. Where relevant, parents and carers should be given information and support to enable them to do this, as set out in the NHS Constitution and summarised in NICE's information on making decisions about your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding that should be used alongside this guidance.

1.1 Overarching principles

Safeguarding

1.1.1 Adhere to all relevant legislation and follow all national and local safeguarding policies and professional guidelines when implementing these recommendations and when planning and delivering healthcare services for all babies, children and young people, in any setting. See further guidance in the NICE advice on safeguarding and the Children's Act 1989 (and subsequent updates).

Disabilities

1.1.2 Adhere to all relevant legislation relating to the rights of disabled babies, children and young people to access healthcare, and make reasonable adjustments as required by legislation to enable this access. See the Equality Act 2010.

Competence

1.1.3 Involve all children and young people in decisions about their healthcare, unless they do not wish (or are unable) to be involved (see recommendations 1.1.4 to 1.1.7). Recognise that:

  • Young people aged 16 or 17 years with mental capacity to make decisions about their healthcare are entitled to do so, and to consent to treatment. There is a presumption that a person above the age of 16 has capacity unless and until assessed otherwise.

  • Children and young people under 16 years can make decisions about their healthcare and consent to treatment if they are assessed by a healthcare professional to be Gillick competent. The conclusion that a child or young person is competent relates to that specific healthcare decision.

Age- and developmentally appropriate care

1.1.4 Ensure that all methods of communication, information and discussions are tailored for the age, developmental stage and level of understanding of the baby, child or young person.

1.1.5 Recognise that needs and preferences may change as children mature, and that it is necessary to revisit these needs and preferences on a regular basis and to adapt support, information and complexity of discussions accordingly.

Changes in needs and preferences

1.1.6 Recognise that children and young people's needs, preferences and engagement with healthcare professionals and healthcare services (for example, how much they would like to be involved in decision making or how much support they need) may vary from day to day, at different encounters or may be affected by other factors (for example, how unwell they are feeling).

1.1.7 Ensure that previously expressed needs, preferences or engagement levels are revisited, and give additional or alternative opportunities for discussions or decisions, particularly if personal or clinical circumstances have changed.

Digital access

1.1.8 Recognise that not all children and young people, or the parents or carers of babies and young children, are able to access digital resources (for example, online information, messaging or video-calling, apps or other digital tools).

1.1.9 Ensure that non-digital methods of attending appointments, communicating, and providing information are available, and provide an equal level of service, for anyone who cannot access (or prefers not to use) digital methods.

1.2 Communication and information

Communication by healthcare staff

1.2.1 Ensure that children and young people, and their parents or carers have a positive experience by:

  • introducing yourself and anyone else present

  • asking them how they wish to be addressed (for example, their preferred name and pronouns)

  • putting the child or young person and their parents or carers at ease by being friendly and welcoming (for example smiling, saying hello, using eye contact)

  • building a rapport to develop trust

  • encouraging children, young people and the parents and carers of babies and young children to contribute to, and be active participants in, discussions and decisions about their care.

    See also the section on support from healthcare staff.

1.2.2 Communicate with children and young people and their parents or carers with:

1.2.3 When communicating with babies, children and young people, particularly those with ongoing health needs, develop an understanding of them as individuals, not only based on their health condition or diagnosis (for example, referring to the baby, child or young person by name, asking them what is important to them in their healthcare).

1.2.4 Take time to listen to and address the concerns and fears of children and young people, and of the parents or carers of babies and young children and:

  • treat their concerns and feelings (such as fear and embarrassment) with empathy and understanding

  • give reassurance that these concerns are very common and are nothing to feel embarrassed or upset about (for example, by saying 'it's OK to be scared').

1.2.5 Identify who is the most appropriate person to communicate with a child or young person, or the parent or carer of a baby or young child (for example, this could be a healthcare professional or other member of the multidisciplinary team, or another professional such as a youth worker or social worker). When deciding on the person, take into account:

  • the clinical circumstances

  • the subjects to be discussed

  • the preferences of the child or young person.

1.2.6 Identify the child or young person's preferred forms of communication and use these when communicating with them. Ask their advice, or ask their parents or carers what these are. Take into account that:

  • English may not be their first language

  • these may be non-verbal (for example, sign language, Makaton)

  • identification of a 'yes' or 'no' response (which might be non-verbal) can allow a direct conversation between a child or young person and a healthcare professional

  • these might need additional resources (for example, foreign language or sign language interpreters, picture boards, computer-based systems)

  • individuals with additional communication needs might need more time and specialist support for alternative forms of communication (for example, augmentative and alternative communication).

1.2.7 Be aware that parents or carers may have communication preferences and needs of their own that may affect their ability to discuss their baby or child's care.

1.2.8 Use developmentally appropriate creative and interactive tools to help effective communications with babies, children and young people (for example, play dough, pictures, diagrams and writing).

1.2.9 Help engage babies, children and young people in communication by:

  • using both verbal and non-verbal methods (for example, sitting at the same level as them, using body language to show attentive listening, reassuring babies by positive touch or containment holding before or during procedures)

  • pausing and allowing time for responses.

1.2.10 When communicating with children and young people, always check they have taken the information in and understood it (for example, by asking children or young people to explain back to you in their own words).

1.2.11 If a child or young person is uncomfortable or having difficulty communicating, try alternatives that may help. This may include:

  • trying again at a different time

  • trying again in a different, quieter or more private setting (see recommendations 1.4.8 and 1.4.9)

  • seeing them without their parents or carers

  • involving a different person (for example, another healthcare professional or an adult trusted by the child or young person)

  • using a different means of communication.

1.2.12 Respect times when children and young people do not wish to communicate, and be aware that their wish to communicate may vary at different times.

1.2.13 In urgent or emergency situations when time may be limited, give children and young people opportunities to communicate whenever possible, and the opportunity to discuss afterwards.

1.2.14 Be aware that babies, children and young people may not communicate pain, distress or anxiety verbally so you may need to:

  • ask parents or carers what is usual behaviour for their child or young person

  • be alert to physical cues (for example, lack of or abnormal movements to reduce pain) or behavioural cues (for example, crying, refusing to speak or pushing away, or behaviour that appears aggressive such as anger, defiance or biting).

1.2.15 All staff involved in providing healthcare services to babies, children and young people should have skills and competencies in relevant communication skills.

1.2.16 For guidance on communicating with children with life-limiting conditions, see the NICE guideline on end of life care for infants, children and young people with life-limiting conditions.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on communication by healthcare staff.

Full details of the evidence and the committee's discussion are in evidence review B: communication by healthcare staff.

Providing information

1.2.17 Ask children and young people, and the parents or carers of babies and young children, about the quantity and type of information they wish to receive, and how they wish to receive it. This should include, but not be limited to, details of:

  • their condition and any treatment options and issues related to these (including diagnosis, possible side effects, long-term outcomes, and symptoms they may experience)

  • any preventative action or lifestyle changes they can make

  • where they will be seen

  • likely timescales and waiting times for their treatment, including keeping them informed about waits or delays at appointments

  • who will be involved in providing their healthcare

  • what will happen at key points in their care (for example, on transfer from one healthcare setting to another, when being referred to a different healthcare team).

    Follow the recommendations on age and developmentally appropriate care and the recommendations on changes in needs and preferences.

1.2.18 When giving information to the child or young person, or the parents or carers of babies and young children:

  • use their preferred method whenever possible; this may be in person face-to-face or other methods (for example email, phone call, text message or video call)

  • take into account that the child or young person's preferences for, and ability to access, digital resources may differ from those of their parents and carers

  • provide written and digital information to back up and supplement face-to-face contact, telephone calls or video calls and to refer to later.

1.2.19 Ensure information for children and young people is provided privately when appropriate, for example:

  • without their parents or carers present if this is what they would prefer

  • by telephoning or texting them directly

  • by addressing letters to children or young people themselves, and not their parents or carers.

1.2.20 Discuss with children and young people if there is information that should be provided to their parents or carers, to help their parents or carers support them or look after them (for example, dietary information, post-operative care, or symptoms to look out for).

1.2.21 Provide information for children and young people or the parents or carers of babies and young children that is:

  • in simple, clear language that is easy to understand, avoiding jargon and explaining any medical terms used

  • evidence based

  • appropriate for their individual needs

  • culturally sensitive

  • not judgemental

  • presented in accessible formats and language that can be understood by them (for example, through an interpreter, translated into another language, or as an easy-read version using pictures and symbols)

  • given consistently by all members of the healthcare team

  • in line with the NHS Accessible Information Standard.

1.2.22 Provide written or digital information (for example leaflets, websites, apps) for children and young people that is:

  • created in partnership with children and young people

  • engaging for children and young people (for example, containing appealing images, video, audio or animations).

1.2.23 Provide information at a suitable time, place and pace, for example:

  • when possible, at regular, predictable times such as during ward rounds or clinic reviews

  • in stages if necessary, so children, young people, parents or carers are not overloaded with too much information at one time.

1.2.24 When children, young people, parents or carers have had time to absorb and reflect on information they are given:

  • check they have understood it, and how it applies to them (see recommendation 1.2.10)

  • allow time to discuss the information again

  • actively encourage them to ask questions

  • make sure they know what to do if they do not understand, or have questions about their healthcare that come up later on.

1.2.25 When giving information to children and young people about their care, take into account:

  • the possible emotional impact of any information provided (for example, children and young people may be upset by what they have been told)

  • that support might be needed to help them think about and process the information

  • that they may feel intimidated by the healthcare professional providing information (if they feel that individual is in a position of authority), and might need reassurance and support.

1.2.26 Warn children and young people, parents or carers that some of the medical information available which they have not been directed to by the healthcare team (for example, online, on social media or from friends) may be inaccurate or have a limited evidence base.

1.2.27 Support children and young people to identify reliable sources of information related to their care or condition, and ensure that recommended sources are:

  • up to date

  • professional, credible and evidence based (for example, NHS resources, charities and support groups).

1.2.28 Advise children and young people to check the validity of information with their healthcare professional if they are unsure about its accuracy.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on providing information.

Full details of the evidence and the committee's discussion are in evidence review D: providing information.

1.3 Planning healthcare

Shared decision making

1.3.1 Respect and support the right of children and young people to be involved in making decisions about their healthcare. This should include:

  • ensuring early and ongoing involvement in discussions about their healthcare

  • providing opportunities for them to share their opinions

  • supporting them to make decisions independently

  • taking into account previous discussions or decisions, and checking if their decisions have changed

  • including them in any decisions when there is a choice of options, including where there is no impact on health or treatment outcomes (for example, what colour plaster cast they would prefer, whether they prefer their medicine as liquid or tablets).

1.3.2 When involving children and young people in decision making, take into account that:

  • the extent and level of their involvement may vary, between individuals and on different occasions; follow the recommendations on changes in needs and preferences

  • on occasions, some children and young people might not wish to be involved in shared decision making, and that this choice should be respected

  • they might wish to have help from their parents or carers, or another person or advocate, for support, to help understand information or to help make decisions

  • they might need time to think about decisions, so planning discussions in advance to allow for this might be helpful.

1.3.3 When discussing and making decisions about treatment options with children and young people:

  • follow the recommendations on communication by healthcare staff and the recommendations on providing information

  • clearly articulate the options, and adapt the description of the treatment options so they are understood by the child or young person you are talking to

  • use alternative methods for discussions and decisions if necessary (for example, children and young people might prefer to write down or pre-record questions or opinions if they are not comfortable talking about them)

  • consider using decision aids to support complex decisions, or if children and young people are having difficulty making a decision.

1.3.4 Involve parents or carers in discussions and decisions relating to the care of their baby or young child (for example, for inpatient care, by allowing parents to be present at ward rounds when their baby or child's care is discussed whenever possible). Follow the same principles as shown in recommendations 1.3.1 to 1.3.3.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on shared decision making.

Full details of the evidence and the committee's discussion are in evidence review A: planning healthcare and making shared decisions.

Risks and benefits

1.3.5 Offer children, young people and the parents or carers of babies and young children information about the potential risks and benefits of healthcare options to allow them to make informed decisions. Follow the recommendations on communication by healthcare staff and the recommendations on providing information.

1.3.6 Ensure this information is:

  • provided in a way they can understand, and they can see how it applies to them

  • relevant to their individual needs and personal circumstances (for example, health setting, health status, age and developmental stage).

1.3.7 Discuss with children and young people how much information they would like about risks and benefits, and take this into consideration. Recognise that some children and young people:

  • might not want to know more about the risks than is needed for informed consent

  • might not want to know about risks on a particular occasion

  • might need additional opportunities to think about and discuss risks and benefits

  • might benefit from alternative methods of communicating risks and benefits

  • might need to take a break when discussing risk, and to come back to the topic later

  • might want to discuss the risks and benefits without their parents or carers present.

1.3.8 When discussing the risks and benefits of healthcare options with the child or young person, parent or carer:

  • check their understanding of what the risks mean to them and what the benefits to them would be (see recommendation 1.2.10)

  • ask them if they have any particular concerns or worries they would like to talk about (for example, fear about procedures such as injections, or children may want to ask about the risk of death, however unlikely this may be)

  • answer any questions they may have and address any concerns.

1.3.9 Reconfirm understanding of risks and benefits on an ongoing basis. Follow the recommendations on changes in needs and preferences.

1.3.10 Explore, acknowledge and respond to any concerns that children and young people or their parents or carers have about risk, and provide opportunities to discuss concerns and what will be done to reduce risk.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on risks and benefits.

Full details of the evidence and the committee's discussion are in evidence review E: understanding the risks and benefits of healthcare decisions.

1.5 Advocacy and support

Involvement of parents or carers

1.5.1 Involve parents or carers in discussions and decisions about the care of babies and young children, and recognise that parents or carers will be their principal caregivers and advocates.

1.5.2 Give all children and young people opportunities to express their opinions about their health needs independently, including:

  • asking them about the extent to which they want their parent or carer to be involved in their healthcare

  • offering to see them separately from their parents or carers for part of the consultation.

1.5.3 Be aware that their wish for parental involvement may depend on the circumstances (for example, what the appointment is about, if they have to have any procedures) or may vary. Follow the recommendations on changes in needs and preferences.

1.5.4 Encourage children and young people to develop their confidence in making decisions for themselves (for example, by giving them opportunities to do this), and encourage their parents or carers to support them with this.

1.5.5 Encourage parents and carers to talk to their child or young person about how they will be involved in decisions about their healthcare. This might include:

  • finding out whether the child or young person would like to know more about what will happen at appointments (for example, what healthcare procedures might take place), even if the parent or carer might feel they should leave out details so as not to worry them

  • the parent or carer reassuring their child or young person that they can have part or all of an appointment without them being present if they would prefer that

  • regularly confirming with their child or young person that they can change their mind at any time about how involved they want them to be.

1.5.6 Ensure that children or young people who do not have a parent or carer to support them, or whose parents or carers are not able to support them, are offered other sources of support (for example, a family member, advocate, social worker, youth worker, nurse or play specialist). Young people may wish to be supported by a friend or partner.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on involvement of parents or carers.

Full details of the evidence and the committee's discussion are in evidence review F: involving parents or carers in healthcare and healthcare decisions.

Support from healthcare staff

1.5.7 All staff involved in providing healthcare services to babies, children and young people should uphold children's rights in accordance with the United Nations Convention on the Rights of the Child.

1.5.8 Advise children and young people about how they can be supported by healthcare staff in a specific setting and encourage them to express their preferences about the support they would find helpful.

1.5.9 Be aware that some children and young people may need more support from healthcare staff than others and that this support may change over time. Follow the recommendations on changes in needs and preferences.

1.5.10 When building a healthcare relationship with children and young people:

  • introduce yourself, explain your role and how you can help support them

  • listen to and be seen to believe their experiences (for example, symptoms such as discomfort, how they are feeling)

  • reassure them that you will take their concerns seriously

  • provide calm and positive emotional support and encouraging words

  • discuss with them how you will act on what they have said.

1.5.11 Help children and young people to speak up about things that matter to them, and their views and preferences by:

  • advocating for them and upholding their preferences if they are unable or unwilling to do this themselves

  • acting as a trusted person for them to talk to when they feel their concerns are not being listened to.

1.5.12 Encourage children and young people to ask for the support they need to help with their healthcare experiences or encourage them to use coping techniques they have already developed. These could include:

  • their parent or carer to be with them or someone's hand to hold

  • music to listen to, a soft toy to cuddle, playing a game on a phone or tablet, a support animal or pet to stroke

  • individual coping techniques.

    Ask them if these techniques help or if they would like to try other techniques.

1.5.13 Provide advice about and access to other forms of support available (for example, from the education or voluntary sector).

For a short explanation of why the committee made these recommendations, see the rationale and impact section on support from healthcare staff.

Full details of the evidence and the committee's discussion are in evidence review G: support from healthcare staff.

Self-advocacy

1.5.14 Facilitate self-advocacy in children and young people. This may include:

  • allowing enough time in consultations and appointments

  • providing confidential and private spaces

  • providing information on their rights to advocate for themselves

  • establishing and using the child or young person's preferred method of communication, paying particular attention to those who do not communicate verbally (see recommendation 1.2.6 and recommendation 1.4.13).

1.5.15 Assume that all children and young people have views and opinions about their own healthcare, and actively encourage them to express what matters to them. In particular:

  • do not make assumptions that certain groups of children or young people will not want or will not be able to advocate for themselves

  • recognise that children and young people from different backgrounds may have different levels of confidence or skills to advocate for themselves.

1.5.16 Empower children and young people to advocate for themselves by:

  • providing information so they can develop an understanding of their own condition and health needs

  • making them central to discussions about their healthcare

  • agreeing with them when and how they would like their parents or carers included in discussions and decision making, and ensure this agreement is followed

  • working collaboratively with them to discuss healthcare needs and treatment options and include them in decisions about their care

  • taking into account their own culture, experiences, needs, wishes and feedback

  • considering the use of age- and developmentally appropriate healthcare-management applications, such as smartphone apps; apps should meet the criteria specified in the NICE evidence standards framework for digital health technologies; see the NHS Apps library for details of NHS approved apps.

1.5.17 Support children and young people to develop skills in advocating for themselves by offering opportunities to be involved in feedback, service design or improvement or other engagement activities (see recommendations 1.7.1 to 1.7.9).

For a short explanation of why the committee made these recommendations, see the rationale and impact section on self-advocacy.

Full details of the evidence and the committee's discussion are in evidence review H: empowering children and young people to advocate for themselves.

Independent advocates

1.5.18 Children and young people must have access to an independent advocate in line with statutory requirements. This includes the Mental Health Act 2007, the Care Act 2014 and the Mental Capacity Act 2005.

1.5.19 Where children and young people are eligible, inform them that, they can have another person, known as an independent advocate, present with them when speaking to healthcare professionals, rather than their parent or carer. See also recommendation 1.3.2 about support from other people for shared decision making.

1.5.20 Provide children and young people who are eligible for support from an independent advocate with information about independent advocates. Include:

  • the role of an independent advocate (including confidentiality and independence from the healthcare team)

  • the option to express a preference for an advocate of a particular gender, or how to change advocate.

1.5.21 Support eligible children and young people to meet with an independent advocate (for example, by providing a private space and time to meet).

1.5.22 Independent advocates should work with eligible children and young people to support and empower them in discussions and decisions about their healthcare. This should include:

  • identifying and using the child or young person's preferred method of communication and using additional support to communicate if necessary (see recommendation 1.2.6)

  • building a trusting relationship, ensuring continuity where possible

  • ensuring confidentiality

  • providing guidance on healthcare systems, pathways and processes, where necessary

  • providing explanations of medical information and terminology, where necessary

  • empowering children and young people to make their own decisions.

1.5.23 Independent advocates should provide a mechanism for children or young people to give feedback on the advocacy service and to check that the relationship is working effectively for the benefit of the child or young person.

1.5.24 Commissioners should consider expanding the availability of independent advocates services to support children or young people who are not eligible under legislation, but who are not adequately represented by their parents or carers or other professionals.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on independent advocates.

Full details of the evidence and the committee's discussion are in evidence review I: independent advocacy in healthcare for children and young people.

1.6 Improving healthcare experience

Food

1.6.1 Ensure babies, children and young people who are inpatients have access to food that meets their needs. This should include:

  • a balanced healthy diet that will help with their recovery

  • a choice of food options at every meal that are culturally and dietetically appropriate and will appeal to a range of tastes

  • flexibility in availability of food, for example access to snacks outside meal times

  • food choices and menus that have been developed in conjunction with children and young people.

    For babies who are breast or bottle fed, ensure there are suitable facilities to support this.

Pain-related anxiety

1.6.2 Reduce the fear and anxiety about pain that may be experienced by babies, children and young people during healthcare interventions by:

  • preparing them with information about interventions or procedures (for example, blood tests and injections)

  • being honest about possible pain and what will be done to alleviate pain

  • using therapeutic play and distraction techniques and creating a calm environment before, during and after interventions or procedures that are likely to be painful

  • upholding children and young people's experiences of pain, showing them they are believed, and avoiding language that minimises the child or young person's experience of pain (for example, do not say a procedure they found painful "didn't really hurt").

1.6.3 Ensure adequate pain assessments are carried out and acted on. See NICE guidelines for the management of pain in specific conditions, such as the NICE guideline on cerebral palsy for under 25s for advice on assessing pain in verbal and non-verbal children and young people, the NICE guideline on end of life care for infants, children and young people with life-limiting conditions and the NICE guideline on sickle cell disease.

Staff uniforms and healthcare clothing

1.6.4 Ensure children and young people, and parents or carers of babies and young children can easily identify members of staff. This could include:

  • visible name badges with easy to understand job roles or titles

  • recognisable uniforms, particularly if they help differentiate between professions.

1.6.5 Be aware that healthcare clothing (for example gowns, masks or visors) can be frightening for babies, children and young people and they may be unable to recognise staff or see their facial expressions or smiles. This is particularly important for children who rely on lip reading or facial cues for communication.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on improving healthcare experience.

Full details of the evidence and the committee's discussion are in evidence review J: improving experience of healthcare.

1.7 Involvement in improving healthcare experience

Design of healthcare services

1.7.1 When designing services that will be used by babies, children and young people:

  • involve children and young people and obtain their views, or for babies and young children, involve their parents or carers

  • actively seek out children and young people (or the parents or carers of babies and young children) from under-represented groups (for example, black, Asian and minority ethnic groups, people with physical, sensory or learning disabilities, people from a disadvantaged background, LGBT+ people, people who have not been able to, or have chosen not to, use the services before, looked-after children).

1.7.2 Assume that all children and young people have relevant opinions on services they use and their care, and will give them if asked in a suitable way.

1.7.3 Make it as simple as possible for children and young people to contribute to service design by:

  • using appropriate methods to engage them, capture their views and enable them to contribute (for example, internet surveys, social media, forums and groups)

  • addressing any practical issues that could be barriers to involvement (for example, transport, timing, language, travel costs, disabilities or communication difficulties).

1.7.4 Ensure that feedback about the design of services from children, young people and parents or carers is shared and used. Explain how their input has shaped design of services (for example, using social media or posters to describe methods such as 'Ask Listen Do' and 'You Said We Did').

For a short explanation of why the committee made these recommendations, see the rationale and impact section on design of healthcare services.

Full details of the evidence and the committee's discussion are in evidence review K: design of healthcare services.

Measuring experience

1.7.5 Collect feedback (for example, using questionnaires or surveys) directly from children and young people at different points in their healthcare experience. Collect feedback for babies and young children from their parents or carers.

1.7.6 Actively seek out feedback from children and young people (or the parents or carers of babies and young children) from under-represented groups (for example, black, Asian and minority ethnic groups, people with physical, sensory or learning disabilities, people from a disadvantaged background, LGBT+ people, people who have not been able to, or have chosen not to, use the services before, looked-after children).

1.7.7 Make it easier for people to give meaningful feedback by using tools that:

  • have been co-produced with the appropriate age group

  • are appropriate for, and selected together with, the intended group (including taking into account any disabilities or communication preferences)

  • are provided at a convenient time and place, and by a convenient method, for respondents (for example, voting systems in a healthcare setting, or an online survey to be completed at home).

1.7.8 Ensure that the feedback on healthcare experiences from children, young people and parents or carers is shared and used. Explain how their input has been used to improve healthcare experiences (for example, using social media or posters to describe methods such as 'Ask Listen Do', 'You Said We Did').

1.7.9 Inform children and young people, and the parents or carers of babies and young children, of their right to complain. Ensure that it is easy for children and young people to make a complaint if they need to.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on measuring experience.

Full details of the evidence and the committee's discussion are in evidence review L: measuring experience.

1.8 Healthcare environment

1.8.1 Care for babies, children and young people in an environment that:

  • meets their clinical and personal needs

  • takes into account their preferences about their place of care (or the preferences of parents or carers for babies or young children)

  • is appropriate for their age and developmental stage, is physically accessible and has adaptations available, if needed.

1.8.2 Provide a healthcare environment that supports:

  • privacy and dignity

  • confidence in healthcare delivery (for example, equipment is available when needed)

  • family-centred care for inpatients (for example, the option for a parent or carer to stay and sleep, including in non-paediatric areas)

  • parents or carers to give developmentally appropriate care to their children (for example, changing their baby's nappy, helping children wash and dress)

  • other family members, siblings, or those important to the child or young person to be present (if this is what they would like)

  • easily accessible, age-appropriate play and recreation for children and young people, including to reduce boredom and anxiety while waiting for appointments or interventions

  • children and young people who are inpatients to mix with friends, peers or partners (for example, flexible visiting times, access to social media, spaces away from clinical areas to meet)

  • a feeling of safety (for example, easy access to call bells or other means of summoning help, knowing that someone is around to help).

1.8.3 Provide a healthcare environment that:

  • is clean, comfortable and feels homely

  • is calm, with as little disturbance from background noise as possible

  • separates treatment areas from those for play and recreation

  • is designed and decorated in a suitable way for the age group it is for (including use of colours, layout, lighting and clear signs)

  • in an inpatient setting is quiet enough for rest and sleep, particularly at night.

1.8.4 Provide children and young people who are inpatients with information about the facilities and routine on the ward (for example, where the bathrooms are located, what times meals are served, where play and recreation facilities are located and how they can be accessed, where there are quiet areas), and answer any questions they may have.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on healthcare environment.

Full details of the evidence and the committee's discussion are in evidence review M: healthcare environment.

1.9 Maintaining usual activities

1.9.1 Give children and young people ongoing opportunities to identify aspects of their lives that are important to them (for example, physical, social and recreational activities, schooling and education, their developmental, cultural and emotional needs).

1.9.2 Discuss with children and young people, particularly those with ongoing health needs:

  • how their health condition and their healthcare will impact on their ability to engage in usual activities

  • what their expectations and goals may be for their future involvement in usual activities, and how they can be helped achieve them.

1.9.3 Ensure that babies, children and young people are able to continue with their usual activities of daily life with minimal disruption while receiving healthcare and, when clinically appropriate, make reasonable adjustments to their environment to support this (for example, providing a quiet space for studying).

1.9.4 In an inpatient setting, ensure free internet access over Wi-Fi, and that any Wi-Fi codes or passwords are freely available so that children and young people can maintain their usual contacts and networks.

1.9.5 Advise children and young people that use of social media or technology (for example, phones, noisy computer games) must not compromise the privacy or the environment of other people.

1.9.6 Recognise that the wishes and needs of each baby, child and young person to engage in the activities they have identified as important to them will vary between individuals and over time. Integrate these needs into the delivery of healthcare.

1.9.7 Make sure that the baby, child or young person's usual support networks (for example, parents and carers, siblings, partners and friends) can be involved in maintaining activities of daily living (for example, changing nappies, washing, getting dressed, eating) and other usual activities.

1.9.8 Ensure coordination between healthcare, education and social care to maintain an individual's usual activities, including education and learning. This could include education support roles, Early Help or making adjustments such as scheduling treatment appointments around school commitments.

1.9.9 Help children and young people to use cultural, spiritual or religious beliefs that they find helpful in their lives as a source of support if they wish. This could include facilitating religious activities such as prayer time, or letting them know about chaplaincy services or other religious support available.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on maintaining usual activities.

Full details of the evidence and the committee's discussion are in:

1.10 Accessibility, continuity and coordination

Accessing healthcare

1.10.1 Provide children and young people with targeted information about:

1.10.2 Reassure children and young people that:

  • healthcare services are there to help them

  • feeling afraid or embarrassed about asking for help is normal but healthcare professionals will understand and provide support.

1.10.3 Develop information about healthcare and healthcare services with input from children and young people themselves, and in collaboration with healthcare professionals (for example, play specialists, child psychologists) and other sectors (for example, education, social care, the voluntary sector).

1.10.4 Provide information for parents and carers to support them in accessing healthcare services for their baby or child (for example, the eRedbook app).

1.10.5 Actively seek out groups of parents or carers who may face barriers accessing healthcare services for their children (for example, those who would benefit from translated materials or those who may have limited internet access), to ensure they have accessible information about what care their children can receive, and are encouraged to use those services.

1.10.6 Provide information to children and young people on:

  • what services they can access with or without their parents or carers

  • whether their parents or carers will need to be told if they access services.

1.10.7 Take into account the views of children and young people, and for babies and young children the views of their parents and carers, when designing or redesigning healthcare services. Include:

  • personal factors, such as the age range, gender and developmental stages of the children and young people using the service

  • social factors, such as the religious, cultural or social background of the children and young people using the service.

    See recommendations 1.7.1 to 1.7.4 on involving children and young people in design of healthcare services.

1.10.8 Provide children and young people with support and help to access the healthcare system. Ensure additional support, such as one-to-one support from a named healthcare or social care professional, is available for those who need it (for example, children with learning disabilities, looked-after children, children in institutional care, care leavers).

1.10.9 Take into account access needs specific to children and young people. This might include:

  • accommodating preferences about the gender of the healthcare professional who they see

  • offering flexible appointments that meet an individual's and family's needs, for example minimising regular appointments during school hours

  • providing services in locations that are easier for children and young people to access, or co-locating with other services that children and young people access (for example, youth centres and schools).

1.10.10 Use flexible methods where clinically appropriate, agreed with the child or young person to deliver healthcare services (for example, telephone or video calls, digital media such as websites and apps) as alternatives to in person face-to-face services to help overcome access difficulties, such as travelling to appointments or relying on parents for transport.

1.10.11 Use feedback from children and young people to improve the accessibility of healthcare services. See recommendations 1.7.5 to 1.7.9 on measuring experience of care.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on accessing healthcare.

Full details of the evidence and the committee's discussion are in evidence review O: accessing healthcare.

Continuity and coordination of care

1.10.12 Maintain continuity of care by providing healthcare from the same professionals or teams when clinically appropriate.

1.10.13 Ensure clear and timely exchange of relevant patient information:

  • between healthcare professionals and children and young people or the parents or carers of babies and young children

  • between healthcare professionals

  • between healthcare, education and social care professionals.

1.10.14 Pay particular attention to communication between healthcare professionals and services and the coordination of ongoing care:

  • at key points in care (for example, on transfer from one healthcare setting to another, or when being referred to a different healthcare team)

  • for children and young people who might need additional support (for example, children with learning disabilities, looked-after children, care leavers, young people who are homeless).

    For advice on transition to adult services, see the NICE guideline on transition from children's to adults' services.

1.10.15 Ensure systems are in place so that children and young people and the parents or carers of babies and young children do not need to unnecessarily repeat their healthcare history when being seen by different healthcare professionals (for example, by using health passports or digital health records).

1.10.16 Ensure children and young people and the parents or carers of babies and young children have access to their healthcare records. Access must meet the requirements of the Access to Health Records Act 1990.

1.10.17 Provide contact information so that children and young people know how to obtain advice from the same service or team in the future.

For a short explanation of why the committee made these recommendations, see the rationale and impact section on continuity and coordination of care.

Full details of the evidence and the committee's discussion are in evidence review P: continuity of care.

Terms used in this guideline

This section defines terms that have been used in a particular way for this guideline. For other definitions, see the NICE glossary.

Accessible

Something (for example, a service or information format) designed in a way so that people who have a disability or impairment are able to use it with a similar level of time, effort and skill needed as someone who does not.

Assent

Agreement given by a child or young person to a course of action or procedure, when they are not legally empowered to give consent.

Containment holding

Placing both hands firmly but gently on a baby and holding the position very still, to provide reassurance and comfort.

Cultural sensitivity

Knowledge, awareness and respect for other people's cultural background, identity and differences, without making assumptions about them.

Focus and reference groups

A series of focus and reference groups with children and young people were held to obtain their views and opinions. These views and opinions were considered by the committee as part of their review of the evidence.

Gillick competent

Children under the age of 16 can consent to their own treatment if they're believed to have enough intelligence, competence and understanding to fully appreciate what's involved in their treatment. Also see the NHS website on consent to treatment – children and young people.

National surveys

A review of recent national surveys of children and young people's views on healthcare was carried out. The findings of these surveys were considered by the committee as part of their review of the evidence.

Non-judgemental

Not criticising or demonstrating a negative attitude about another person's feelings or actions, based on personal opinions or personal biases.

Parents or carers

Parents or carers refers to the primary caregivers for a baby or child at any given time. This can include birth or adoptive parents with parental responsibility, other members of the extended family who provide care such as siblings, grandparents, aunts and uncles, others nominated by the parents, or legal guardians. For looked-after children or those who lack mental capacity, it can also include those acting instead of parents such as a social worker, key worker, foster carers or guardians. It does not refer to nurses, healthcare assistants or other healthcare professionals who are acting in their professional capacity.

Positive touch

Human touch that aims to give babies the experience of touch that is not for a clinical purpose, but is given tenderly, lovingly and gently, and that which responds to and does not ignore their behaviour.

Usual activities

Activities that form part of a baby, child or young person's daily life and which may be disrupted by illness or the need to access healthcare services. This may include activities of daily living (bathing, showering, eating), interactions with family and friends, social and emotional development, education and schooling, sports, hobbies and interests, social activities and use of social media.

  • National Institute for Health and Care Excellence (NICE)