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.

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:

• kindness, compassion and respect
• cultural sensitivity
• a non-judgemental attitude.

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.

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.

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.

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.

Consent

1.4.4.

Support children and young people to make informed decisions to assent to, consent to or refuse treatment, taking into account their individual capacity or competence (which may be different for different decisions).

1.4.5.

Provide children and young people with clear explanations about why treatment in their best interests had to go ahead if it is not possible to obtain their consent or assent before treatment (for example, in an emergency situation).

1.4.6.

If there is a difference of opinion about consent, assent or refusal for a procedure (for example, if the views of the child or young person are different from those of their parents or carers, or the views of the child, young person or parent or carer are different from those of healthcare professionals):

• recognise that all discussions and decisions should focus on what is in the best interests of the baby, child or young person
• consider involving others, such as another member of the multidisciplinary team, another healthcare professional, an independent advocate, or a named or designated professional for child protection
• discuss with the child, young person and their parent or carer that you would like to involve other people
• ensure that the child, young person and parent or carer are offered support.

1.4.7.

Reconfirm a child or young person’s understanding and consent decisions on an ongoing basis. Follow the recommendations on changes in needs and preferences.

Privacy and confidentiality

1.4.8.

Maintain privacy and dignity during discussions, examinations and care. Take into account individual preferences, circumstances and cultural sensitivities whenever possible.

1.4.9.

Discuss potentially sensitive topics in places where they are less likely to be overheard, when possible, for example, in a clinic room or side room rather than behind bed space curtains.

1.4.10.

When using digital or virtual methods for consultations or discussions:

• ask if the child or young person is able to speak without being overheard to discuss potentially sensitive topics
• confirm with them that they are able to talk freely, or if they would prefer an alternative time or method of communication.

1.4.11.

Be aware that information sharing, privacy and confidentiality laws also apply to babies, children and young people. Only share their information:

• with their consent for the purposes of care and treatment or
• when in the baby, child or young person’s best interests to do so or
• when otherwise required to do so by law.

1.4.12.

Offer children and young people the opportunity to see and talk to a healthcare professional without the presence or involvement of their parent or carer, and explain that this discussion will be confidential.

1.4.13.

If children and young people who usually rely on their parents or carers for help communicating want to have private conversations with healthcare professionals without the presence or involvement of their parent or carer, ensure additional support is provided (for example, by determining mechanisms to enable children and young people to express a ‘yes’ and ‘no’ response (which may be non-verbal), or including other people in conversations and meetings). See recommendation 1.2.6.

1.4.14.

Explain to children and young people that it may be necessary to share confidential information without their consent in certain circumstances (for example, if they or others may be in danger).

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.

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).

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).

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.

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.

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’).

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.

Accessing healthcare

1.10.1.

Provide children and young people with targeted information about:

• when an illness or condition means they should seek medical help
• what services are available (for example, using the NHSGo app)
• when and how they can access services.
  Follow the recommendations on providing information.

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.

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.

1. Risks and benefits

What decision aids are the most cost effective and acceptable when explaining the risks and benefits of healthcare interventions to children and young people?

2. Independent advocacy

How can the views of babies, children and young people be best represented by independent advocates?

3. Improving healthcare experience

What elements of healthcare matter most to babies, children and young people to create positive experiences of healthcare?

4. Measuring experience

How can the experience of babies, children and young people be measured so as to improve their experience of healthcare?

Why the committee made the recommendations

The committee were aware, based on their own knowledge and experience, that safeguarding is an important consideration that applies to all aspects of healthcare services, and so made an overarching recommendation to state this. Similarly, the committee were aware that it is necessary for all services to make reasonable adjustments as required by legislation in order to meet the needs of disabled babies, children and young people, and so made an overarching recommendation to state this.

Based on stakeholder feedback, the committee added an overarching recommendation to clarify the rights of children and young people to make decisions about their healthcare and to consent to treatment.

There was evidence from a number of reviews: that all discussion, support and information need to be suitable for the age, developmental stage and level of understanding for an individual child or young person; that, as children develop and mature, their healthcare needs and preferences change; and that determining needs and preferences is not a static one-off decision.

As a number of recommendations throughout the guideline relate to the use of digital resources, the committee clarified that alternative methods should be available as access to these digital resources is not universal.

How the recommendations might affect practice

The recommendations are in line with current practice and should have little impact on resources, but may mean extra time is needed to revisit needs and preferences on a regular basis, or to provide alternatives to online information.

Return to recommendations

Why the committee made the recommendations

There was good evidence that children and young people like healthcare professionals to communicate in a friendly, compassionate and respectful manner, reading behavioural cues, giving them sufficient time, listening to them and getting to know them on a personal level.

There was good evidence that different methods of communication should be used when appropriate, and this includes using verbal and non-verbal communication, and identifying the best way to communicate for individuals, particularly those who have additional communication needs.

The committee were also aware of the need for healthcare professionals to ensure that different methods of communication are used if necessary to meet the requirement of the Mental Capacity Act 2005 that a person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been tried.

How the recommendations might affect practice

Healthcare professionals might need more time to communicate with children and young people and this could mean some consultation times are longer, which would create a resource impact for the NHS. Additional help to communicate may be needed (for example, use of foreign language or sign language interpreters) and that may also have a resource impact for the NHS.

Ensuring that all staff are competent to communicate effectively might also need additional time and resources for training and skill development.

Return to recommendations

Why the committee made the recommendations

There was good evidence from the systematic literature review on the preferred sources of information, with in person face-to-face information provided by a healthcare professional one of the preferred and most trusted forms of information. The evidence showed that healthcare professionals should provide information clearly in a way that is easy for children and young people to understand, and that it is important that healthcare professionals consider when and how to deliver information, as sufficient information needs to be provided, but this should not be overwhelming. The evidence also showed that children and young people, and the parents of babies and young children, want information in a variety of formats, including written materials, websites and smartphone applications and any other digital sources, and that these sources should be clear and easy to understand and relevant.

There was evidence that children and young people would want their parents or carers to have information tailored to their condition and needs in order to provide support and look after them.

There was evidence that whatever the format, information should be age- and developmentally appropriate, and should be available in different versions (for example, easy-read versions) and languages to allow as many people to access it as possible.

The evidence from the focus and reference groups and some limited evidence from the national surveys reinforced the systematic literature review evidence, showing that the quantity of information should not be overwhelming, and that there is a need for clear, understandable verbal and written information.

How the recommendations might affect practice

The recommendations may mean additional time and resources are needed to deliver and produce information in suitable formats (for example leaflets, websites, apps) in partnership with children and young people. However, it was acknowledged that many services are already using a variety of alternative ways of proving information to children or young people and the overall resource impact in this area will be modest.

Return to recommendations

Why the committee made the recommendations

There was evidence from the systematic literature review, focus and reference groups and from the national surveys that most children and young people want to be involved in making shared decisions about their healthcare, but that the level of preferred involvement may vary between different children, on different occasions and may change as children get older.

The committee were also aware of the requirement of the Mental Capacity Act 2005 that a person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been taken without success. Healthcare professionals therefore need to tailor their approach to discussions (with advice from other specialists or those who know the person well if necessary) to ensure this.

There was some evidence on children and young people’s preferences for how the shared decision-making process should be undertaken, for example by starting discussions as soon as possible, making sure information is presented clearly, tailoring its complexity, providing it at a suitable pace and using decision aids if they are available.

The committee also used their knowledge and experience to make additional recommendations to adhere to these principles when making shared decisions with parents and carers on behalf of babies and young children.

How the recommendations might affect practice

Additional time may be needed to carry out meaningful discussions around shared decision making. Ensuring that all staff are competent to implement shared decision making effectively might also need additional time and resources for training and skill development.

Return to recommendations

Why the committee made the recommendations

There was limited evidence that decision aids improve knowledge about risks and benefits and reduce decisional conflict, but as there was insufficient evidence to allow the committee to give advice on their use, a research recommendation was made on this topic (see research recommendation 1). There was some evidence from the focus and reference groups that children and young people vary in their views about how much information they like to receive on risks. Based on this evidence, and on their knowledge and experience, the committee made recommendations on the best ways to discuss risk and benefits with children and young people, including pacing this information, having discussions without parents and carers, and ensuring understanding.

How the recommendations might affect practice

The recommendations might mean additional time and resources are needed to help children, young people and the parents or carers of babies and young children understand the risks and benefits of healthcare decisions. Ensuring that all staff are competent to discuss risks and benefits effectively might also need additional time and resources for training and skill development.

Return to recommendations

Why the committee made the recommendations

No evidence relating to consent was found, but the committee discussed that children and young people have the legal right to consent to, or refuse, treatment as set out in UK law and the UN Convention on the Rights of the Child. These rights are dependent on their age and competence and as the committee agreed it was such an important principle, they included these details in an overarching recommendation at the beginning of the guideline.

The committee used their experience and expertise to make recommendations on how children and young people could be best supported to make decisions on consent. The committee also used their knowledge and experience of how differences of opinion over consent, assent or refusal of treatment should be approached. This could include involving other healthcare professionals, but the committee also recognised that the child, young person, parents or carers should be offered support so that they did not feel outnumbered in discussions.

There was some low-quality evidence on privacy and confidentiality, which showed that children are aware of the risks to anonymity and privacy with digital information applications, but that they also recognised that in some cases, it was valuable to share information (for example, with parents, or to allow peer-to-peer support). The committee therefore also used their experience and expertise on best practice at maintaining privacy (particularly when using digital or virtual methods for consultations, or with children or young people who needed additional support to communicate without their parents or carers), discussing private and confidential information with children and young people, and the sharing of information with parents or carers.

How the recommendations might affect practice

There are already examples of good practice across the NHS concerning consent, privacy and confidentiality, and these recommendations are designed to increase consistency throughout the NHS. Implementing these recommendations might mean extra time is needed for healthcare professionals to discuss and explain issues surrounding consent, privacy and confidentiality with children and young people. There may also be a need to consider the environment in which healthcare is delivered to provide privacy and ensure confidentiality.

Return to recommendations

Why the committee made the recommendations

There was evidence that children and young people want to be able to express their opinions independently from their parents, but they also value their parent or carers’ presence or support. There was evidence that the extent of support they want varies depending on the circumstances and the child or young person, and that it should be discussed between parents or carers and their children. The committee were aware from their knowledge and experience that certain groups of children and young people did not have parents or carers to support them, and that it is particularly important that these children and young people should be offered alternative support.

How the recommendations might affect practice

The recommendations are in line with current practice and should have little impact on resources, but may need extra time to have these discussions, and to see children with their parents or carers and separately.

Return to recommendations

Why the committee made the recommendations

There was evidence that children and young people have differing preferences for the support they wish to receive from healthcare professionals, so this should be personalised based on their preferences at any time (as these preferences can change depending on different factors). There was also evidence around needing to build a trusting relationship. Based on their knowledge and experience, the committee agreed that it was essential that healthcare professionals support children and young people’s rights and advocate for them where necessary. There was also evidence that children and young people appreciate support to identify and use coping techniques, and to be advised on other sources of support.

How the recommendations might affect practice

Additional time may be needed to build trust, discuss and provide the support according to the preferences and needs of children and young people.

Return to recommendations

Why the committee made the recommendations

There was evidence from the systematic literature review and the focus and reference groups for strategies that would enable children and young people to advocate for themselves with respect to their healthcare and related decisions. This includes providing time, space and adequate information.

There was evidence that some children and young people felt as though healthcare professionals have a preconceived idea of their ability and motivation to engage with healthcare decisions. This often results in missed opportunities to encourage vulnerable children and young people to engage in their care and advocate for their choices.

The evidence also showed that engaging children and young people in feedback, service design and other activities could improve and facilitate their self-advocacy skills.

Based on the evidence and their knowledge and experience, the committee identified approaches to empower children to advocate for themselves.

How the recommendations might affect practice

Additional time may be needed to discuss and provide the adequate support to children and young people so they can be empowered to advocate for themselves.

Return to recommendations

Why the committee made the recommendations

The recommendations reflect current UK legislation in respect of access to independent advocates in certain situations for children and young people. Based on their knowledge and experience, the committee recognised the potential benefits to children and young people of independent advocacy in wider healthcare situations, not currently covered by the legislation. These benefits include support to understand healthcare processes and procedures, to express views and opinions, and with decision making.

There was evidence from an expert witness and the focus and reference groups that eligible children and young people may have limited knowledge about independent advocacy services. Therefore, they should be provided with this information and supported throughout the process.

There was evidence from the expert witness and the focus and reference groups about the role of independent advocates, which involves supporting children and young people in decisions about their healthcare and that, in order to be most effective, independent advocates should take time to build a trusting and confidential relationship with children and young people.

As there was no evidence from the systematic review of the literature for this review, the committee made research recommendation 2.

How the recommendations might affect practice

The recommendations on access to an independent advocate are in line with current UK legislation, with little additional impact on resources. However, the suggested expansion of this service to children and young people who are not adequately represented by parent and carers may lead to an increase in the number of independent advocates needed by NHS services, which will need an increased level of funding. There may be an increased amount of time for healthcare professionals to facilitate this use of independent advocates.

Return to recommendations

Why the committee made the recommendations

The qualitative and quantitative evidence identified 4 aspects of healthcare that were important to children and young people but which were not covered in other evidence reviews. These were food, pain-related anxiety, staff uniforms and healthcare clothing, and religious, cultural and spiritual support. Based on their expertise and experience, the committee made additional recommendations on these topics. The committee agreed that the recommendations on religious support related to maintaining usual activities, and therefore they placed this recommendation in that section of the guideline.

As there was limited quantitative evidence on the elements of healthcare that matter most to babies, children and young people to create a positive experience of healthcare, the committee made research recommendation 3.

How the recommendations might affect practice

The recommendations reflect best practice and may reduce variation in practice.

Return to recommendations

Why the committee made the recommendations

There was some evidence that children and young people are keen to contribute to the design of healthcare services, and appreciate the opportunity to do so. There was also evidence that the children and young people recognise there could be practical difficulties with involvement (for example, time, travel, number of events, and content not being age- or developmentally appropriate). There was evidence that ways to obtain feedback should be age- and developmentally appropriate. There was evidence that children and young people want their views to be taken seriously, and that they appreciate being told how their input had changed practice.

The committee and stakeholders identified that there may be particular groups who may be less likely to be involved in the design of healthcare services and so recommended that the views of these groups should be actively sought. However, the list is not exhaustive and other groups may be identified according to local circumstances or demographics.

How the recommendations might affect practice

There are already examples of good practice across the NHS, but practice is inconsistent. These recommendations aim to standardise how children, young people, parents and carers should be involved in the design of services, to encourage more consistent practice across the whole NHS.

Implementing this across the NHS might mean increased resources are needed to develop the tools, identify participants, aid involvement, and evaluate and feedback the results.

Return to recommendations

Why the committee made the recommendations

There was some evidence from the focus and reference groups that children and young people are keen to provide feedback, that they are willing to use a variety of methods to do this, and that surveys should be quick and easy to complete. The evidence also showed that children and young people prefer giving their feedback at or towards the end of treatment but based on their knowledge and experience, the committee agreed this should be at various points in treatment. There was a very small amount of evidence from the national surveys on the problems children and young people had had using complaints systems. The committee also used their own knowledge and experience on helping people give feedback to optimise responses.

The committee and stakeholders identified that there may be particular groups who may be less likely to be involved in providing feedback on healthcare services and so recommended that the views of these groups should be actively sought. However, the list is not exhaustive and other groups may be identified according to local circumstances or demographics.

As there was very limited evidence from the systematic review of the literature on measuring children and young people’s experience, the committee made research recommendation 4.

How the recommendations might affect practice

Experience may already be measured in a number of different ways across the NHS and these recommendations will increase measurement of experience, reinforce best practice and make practice more consistent.

Implementing this across the NHS might mean more resources are needed to co-produce the tools, identify participants, aid involvement and evaluate and feedback the results.

Return to recommendations

Why the committee made the recommendations

There was some evidence from young people about their preferences, and from parents of babies in neonatal units, and the committee agreed that all babies and young children (represented by their parents), children and young people, should be able to express views about the preferences for place of care. The committee used this and their own knowledge and experience to agree how settings should be appropriate, comfortable, welcoming and acceptable to the people who need to use them. There was evidence that young people prefer their care environment to be age-appropriate, and that they may feel uncomfortable in paediatric settings aimed at young children. There was also evidence that they like to be able to meet visitors in an appropriate space, to have areas for recreation facilities, to have adequate signs, and for there not to be too much noise. They also expressed wanting to feel safe in healthcare environments.

There was evidence from parents or carers of babies about the need for privacy, comfortable furniture and furnishings, and facilities so they have the option to stay with their babies. Although there was no evidence about privacy for children and young people, the committee agreed that offering privacy is important, based on their knowledge and experience.

How the recommendations might affect practice

The recommendations aim to make best practice more consistent across the NHS. Some changes to improve the healthcare environment might be easy to make, but changing or redesigning healthcare environments can be an expensive process, and some of the recommendations could need considerable resources to implement.

Return to recommendations

Why the committee made the recommendations

Based on their knowledge and experience, the committee made recommendations on the importance of determining what usual activities were important to children and young people, and making adjustments to allow these to continue. The committee agreed that providing support to continue with usual activities would need to be personalised to account for different needs, preferences and developmental stages. The committee recognised the benefits to the wellbeing of children and young people of continuing with usual activities, which may include a reduction in boredom, anxiety and distress. There was evidence that some children prefer to receive help with personal care from their family, as would happen if the child were at home. There was also evidence that children and young people want to continue with social activities and keeping in touch with their friends. There was no evidence from the systematic literature review specifically about Wi-Fi access but the committee agreed that the ability to instantly contact friends was a part of everyday life for most children and young people and this was reinforced by evidence from the focus and reference groups and the national surveys.

The evidence on educational support reinforced the committee’s experience that maintaining educational provision and liaison with education services is very important.

There was evidence that some children and young people found religious or spiritual support or beliefs helpful when they were unwell. Other aspects from this evidence are reflected in the recommendations on improving healthcare experience, where this evidence is described in more detail.

How the recommendations might affect practice

The recommendations aim to reduce variation in practice across the NHS, and might mean extra staff time or changes in practice are needed to implement them.

Return to recommendations

Why the committee made the recommendations

There was evidence from the systematic review of the literature about factors that could be barriers for children and young people to access health services. This included factors relating to practical aspects of accessing healthcare such as location and timing of appointments, as well as trust and relationships with healthcare professionals and lack of knowledge about when to access healthcare, and what services to access. The focus and reference groups also provided evidence about the perceived barriers and these included fear and embarrassment, being too busy to access healthcare or not wanting to miss out on school or social activities, and being aware of the capacity issues within the NHS. The committee then used this evidence to make recommendations designed to overcome these barriers. The evidence from the national surveys also identified that certain groups of children and young people may need additional help and support to access and navigate the health system.

How the recommendations might affect practice

Additional resources may be needed to promote and deliver accessible and flexible services.

Return to recommendations

Why the committee made the recommendations

There was good evidence that children and young people prefer to see the same healthcare professionals whenever possible, and that this promotes improved engagement and continuity of care. The committee were aware that children and young people prefer to be able to contact their healthcare professionals or teams directly.

There was good evidence that children and young people do not want to have to repeat their healthcare history on multiple occasions, and that good and timely communication between healthcare professionals, services, and children and young people and the parents or carers of babies and young children could help with this. There was also some evidence for the use of different methods to help improve communication and continuity of care, and in particular the use of electronic health records.

How the recommendations might affect practice

There are some electronic and paper methods to improve communication already in use, including electronic health records. Implementing more integrated systems to share information with and between healthcare professionals, other services and children and young people or the parents and carers of babies and young children will have resource implications for the NHS. In addition, there may be a need for improved administration support to help with the sharing of information, which will also have some resource implications.

Return to recommendations