Continence issues

Causes

Children experience continence issues for a variety of reasons. They might be born with a disability or condition which affects their bladder and/or bowel function, or something might happen later in life.

It’s important to remember that there may be more than one factor which is affecting a child’s continence.

Medical conditions

Some continence issues can be the result of a medical condition, illness or injury. These may be temporary or permanent, and occur at any stage of a child’s development (Bladder & Bowel UK and ERIC, The Children’s Bowel & Bladder Charity, 2019)¹.

Examples include:

• development of a functional condition such as wetting or soiling
• a urinary tract infection (UTI)
• a bacterial infection such as salmonella
• spinal cord damage following an accident
• a benign or malignant tumour.

It’s important to seek medical advice for all unexplained and irregular continence issues.

Children with special educational needs (SEN), additional needs and/or disabilities

Many children with SEN, additional needs and/or disabilities are able to use the toilet and maintain full bladder and/or bowel continence. This can be an important step in gaining independence, health and dignity.

But some additional needs and disabilities have an impact on a child’s continence. Challenges children might face include:

• not being able to control when they go to the toilet
• having mobility problems that make it difficult to get to the toilet in time
• having communication barriers that make it hard to ask for help when needed
• having sensory processing difficulties that make it frightening to use toilets, for example if there is an electric hand drier or an unpleasant smell

(Bladder & Bowel UK and ERIC, The Children’s Bowel & Bladder Charity, 2019)².

Stress

Stress can be a key factor in the development of continence issues, particularly if there is no underlying medical condition or physiological reason. But having continence problems can also cause additional stress and distress for a child and their family.

Factors that have been found to affect continence include:

• being bullied
• school difficulties
• exam related stress
• separation from a close friend
• a parent being made unemployed
• a close family member being seriously ill
• frequent punishment (including punishment during toilet training)
• behavioural sleep problems
• emotional problems such as tantrums
• stressful and/or traumatic life events
• being a victim of abuse

(Joinson et al, 2019³; Martins et al, 2016⁴; Phillips et al, 2015⁵).

Children and young people may avoid going to the toilet if they find the environment unpleasant or stressful, or if they feel unsafe. For example, if school toilets are not clean or if bullying takes place there, children may avoid using them (Shoham et al, 2020)⁶.

This may lead to further continence problems, such as constipation, dysfunctional voiding (not being able to completely empty the bladder) and/or urinary tract infections (UTIs).

Child abuse and neglect

Continence issues have a range of causes but in some situations, they may indicate a child is experiencing abuse and/or neglect.

For example:

• continence issues can be an indicator of emotional distress
• sexual abuse can cause physical damage to a child’s anal and genital area and/or result in sexually transmitted infections that affect continence
• sexual abuse may also lead to an overactive bladder (Lai et al, 2016)⁷
• female genital mutilation (FGM) can lead to incontinence or difficulties urinating (NHS Choices, 2020)⁸.

Some parents and carers may find it difficult to cope with their child’s continence issues. You should look for patterns of behaviour that might suggest they need support to meet their child’s needs. For example:

• if parents respond to continence issues with frustration, blame, anger, punishment, violence and/or rejection
• if clothing has not been cleaned after a child has soiled or wet themselves.

Impact

Experiencing continence issues can have a long-term impact on a child’s wellbeing. It’s really important that children are given the support they need.

Mental health and behaviour

Continence issues can affect a child or young person’s sense of autonomy and independence. They may feel embarrassed, develop low self-esteem and/or become withdrawn from social situations (Dellenmark-Blom, M. et al, 2019)¹.

The psychological impact of having bladder and bowel issues can lead children to display challenging behaviour in other areas of their life (Grzeda et al, 2017)².

Stigma

Children with continence issues may experience stigma and/or bullying from adults and children. This can make them reluctant to speak out about their experiences and can create a barrier to disclosing abuse or neglect (Whale et al, 2018)³.

Some children with continence issues may avoid using the toilet, for example if it isn’t equipped for their needs and they feel embarrassed about asking for help. This can lead in turn to the child developing urinary tract infections (UTIs) and further medical problems (Vernon, Lundblad and Hellstrom, 2003)⁴.

School

Bladder and bowel issues can lead to a child missing school, because they:

• need to attend medical appointments
• have frequent urinary tract infections (UTIs) and/or abdominal pain
• feel uncomfortable or frightened about using school toilets
• are frightened about having accidents
• are worried their peers will find out about the issue.

Children with continence issues may need more time to go to the toilet than their peers, which may mean they are missing lesson time.

This can have a negative impact on children’s learning and development. There is evidence to suggest that having continence problems is associated with academic underachievement (Whale et al, 2018)⁵.

If a child is not attending school, their teachers and other school staff will be less able to build a trusting relationship with them and identify and respond to any child protection concerns.

Parents, carers and siblings

If a child has continence issues, parents and carers may need to undertake intimate care or extra tasks such as:

• changing continence products including nappies
• washing clothes and bedding more frequently
• taking children to medical appointments
• discussing support needs with the organisation or school
• emptying colostomy bags
• supporting catheterisation (the process of inserting a tube to empty the bladder).

This can have an impact on parents’ and carers’ capacity to provide care for the whole family, particularly if the family is already experiencing challenges such as financial worries, relationship stress, parental mental health problems or domestic abuse.

Supporting children

All children have the right to participate and fulfil their potential (Office of the United Nations High Commissioner for Human Rights (OHCHR), 1989)¹. Across the UK, there is also legislation to protect people with disabilities from discrimination.

You should never refuse to admit a child into any activity, school or organisation because they have continence issues.

> Find out more about the legislation to protect disabled people from discrimination

Creating a safe and comfortable environment

It’s important to create an environment where all children feel comfortable and safe to use the toilet whenever they need to.

You should:

• ensure toilets are safe and provide children with privacy
• ensure toilets are clean and appropriately stocked with necessary items such as toilet paper, soap and hand towels
• give children frequent access to water-based drinks and allow them to use the toilets throughout the day
• prompt children to use the toilets as necessary (for example you might want to remind them to use the toilet during breaks)
• ensure some cubicles (for example disabled toilets) have extra space and a basin inside, so that children can clean themselves if necessary
• put bins in all cubicles (for all genders), which can be used for sanitary items, catheters, stoma bags and continence products
• consider how to make toilets more accessible to children with sensory processing difficulties
• make sure children know who they can talk to if they have a continence issue (whether this is one-off or part of a pattern)
• never knowingly leave a child in soiled clothing - have a selection of clean underwear and clothing available in case children need it.

It’s not always easy to talk about continence problems. By building a trusting relationship with the children and young people you work with, you can encourage them to talk to you if they are worried about anything.

Keep a record of any continence issues experienced by the children you work with. This will help you identify any patterns that might indicate a child needs support for a bladder or bowel condition.

Responding to concerns

Your school or organisation should take action to support children with continence issues, recognise any concerns, and respond appropriately and proportionately.

If you have any concerns about a child’s welfare, you should follow your organisation’s safeguarding and child protection procedures as soon as possible. These should provide clear guidelines on the steps you need to take if you’re worried that a child might be at risk of harm.

Your safeguarding and child protection procedures will state who in your organisation has responsibility for safeguarding or child protection and who you should report your concerns to.

Continence issues might indicate a safeguarding and child protection concern if:

• they are a direct result of abuse and/or neglect
• they are a result of stress which is caused by abuse and/or neglect
• they are a result of, or are contributing to, mental health concerns
• parents or carers are not responding appropriately to the child’s continence needs.

> Find out more about safeguarding and child protection policies and procedures

> Find out more about recognising and responding to abuse

Female genital mutilation (FGM)

If you know or suspect that a child has undergone FGM you need to take action – even if the FGM didn’t happen recently.

Regulated health and social care professionals and teachers in England and Wales must report ‘known’ cases of FGM in those under age 18 to the police (Home Office, 2016)¹.

Under Section 5 of the Criminal Law (Northern Ireland) Act 1967 it is an offence to fail to report a ‘relevant offence’ to the police. This includes:

• knowing or believing that an offence has been committed
• having information which could lead to the apprehension, prosecution or conviction of an offender.

This legislation covers offences against children and adults and includes offences related to FGM.

> Find out how to respond to FGM

Care plans

If you know a child has continence issues, you should work with them, their parents or carers and health care professionals to develop a care plan. This will help ensure the child’s individual needs are understood and met (Bladder & Bowel UK and ERIC, The Children’s Bowel & Bladder Charity, 2019)¹.

If a child already has a care plan, for example if they have a disability, this should be reviewed to make sure it includes any continence care needs.

Who to talk to

The causes and treatment for continence issues can be complex, and problems don’t necessarily stop once a source of stress is removed.

This means that any child with continence issues should have a holistic assessment from an appropriately experienced health practitioner. You should take their findings into account and follow their recommendations.

You should make sure parents and carers have a good understanding of their child’s needs and are able to access support.

You should also involve the child in decisions made about their care as much as possible. You might want to create a version of the care plan that the child can understand and refer to.

What to include in the care plan

When you’re developing a care plan, things to discuss include:

• which adults within your organisation need to know about the continence issue
• who the child will talk to if they need help and how they want to do this (for example would they prefer to use a ‘code word’ or signal to indicate that they need to go to the toilet?)
• what equipment is needed, such as access to clean clothes, wipes, stoma bags, catheters and continence products, how these will be provided (for example by parents) and where they will be stored so they can be easily and discretely accessed
• how to discreetly return soiled items for laundering
• how to support the child if you are carrying out an off-site activity or overnight stay.

If the child needs help to go to the toilet and/or change their clothes, you will need to include information about intimate care in their care plan. For more information about intimate care, see the next tab.

Policies and procedures

Your organisation should have a clear policy and procedures for how care plans are written, carried out and reviewed. This should include clear information about safeguarding and child protection.

Your policy and procedures should highlight that:

• children receiving extra care and support may be more vulnerable to abuse
• all staff and volunteers have a responsibility to report any child protection concerns
• perpetrators of abuse can include people known to and trusted by the child and their family.

You should set out how your organisation or school will respond to allegations of abuse related to the care you are providing for a child. You should also include information about how you will keep records about the care you are providing.

> Find out more about managing allegations of abuse against someone who works or volunteers with children

> Find out how to prevent abuse by people in a position of trust or authority

> Read our information on child protection records retention and storage

Reviewing the care plan

You should review and update the care plan regularly to ensure it continues to meet the child’s needs. You should do this at least annually, but it’s best practice to have a review whenever there is a change to the care the child needs, or at transition points (for example if the child is joining a new class).

Intimate care

If a child needs help to go to the toilet and/or change their clothes, you should work with them, their parents or carers and their health practitioner to agree how best to provide this support safely. This should form part of the child’s care plan.

Who should provide intimate care?

As part of the care plan, you should record in writing what intimate care is needed, where it will be carried out and who will provide it.

Identify which adults will be providing intimate care to the child. To give the child continuity and protect their dignity, you should nominate two or three people who will work with them. These adults should be:

• comfortable with providing intimate care
• trained appropriately (for example if the child needs specific support for a particular condition)
• the same gender as the child if possible.

Make sure you have named enough people to provide cover for absences. If somebody who isn’t named on the plan needs to provide intimate care, it’s best practice to get written permission from the child’s parents or carers in advance. If this isn’t possible, you could consider seeking verbal permission - but back this up in writing as soon as you can.

You should also agree how many adults will provide intimate care for each child. In some cases, two adults may need to be present, for example if they need to operate equipment such as a hoist.

If a lone adult is providing intimate care, they should inform another adult immediately before and after giving the care. They should make sure any concerns that may arise are reported immediately, for example changes in the child’s behaviour or unexplained bruises.

> Find out more about best practice for lone working

Vetting and barring checks

Everyone who works with children needs to have been recruited safely, including undergoing the necessary vetting and barring checks. Those providing intimate care will be working with a child when the child is particularly vulnerable. This means it’s vital you follow safer recruitment processes to ensure they are right for the role.

People providing children with unsupervised intimate care in England, Northern Ireland and Wales need to have undergone an “enhanced with barred list” check. In Scotland, people providing personal services to a child need to undergo a Protecting Vulnerable Groups (PVG) check.

You may already have carried out an “enhanced with barred list” or PVG check as part of your recruitment process.

Privacy and boundaries

You should make it clear that only adults who have written permission are allowed to provide intimate care.

The care plan should specify what kind of care is needed and how it should be carried out. Adults should not carry out any ‘extra’ care or provide care in a different way without written agreement from parents or carers.

Explain to the child that their body belongs to them, and make sure they know who they can go to if they are ever worried or uncomfortable about anything. You can use our resources to reinforce this message regularly in a child-friendly manner.

> Have a look at our free PANTS resources

> Use our Love Life resources to start conversations about privacy and boundaries

Legislation and guidance

Across the UK there is legislation and guidance about how to provide safe care for children and young people with continence issues.

Female genital mutilation (FGM)

There is key legislation and guidance about recognising and responding to FGM in each nation of the UK.

> Read our summary of the legislation and guidance on FGM

Intimate care

In England and Wales, procedures for intimate care are outlined in Section 64 of the Protection of Freedoms Act 2012.

In Northern Ireland, Part 1 of Schedule 2 of The Safeguarding of Vulnerable Groups (Northern Ireland) Order 2007 outlines intimate care and regulated activities with disabled children.

The Department of Health has also provided an Intimate care policy and guidelines regarding children (Department of Health, 2006)¹.

In Scotland, the Protection of Vulnerable Groups (Scotland) Act 2007 sets out the statutory guidance for regulated work with children, including intimate care.

Guidance for schools and colleges

There is guidance for schools across the UK about supporting children with healthcare needs.

> Find out more about supporting children with medical conditions in schools

Bladder & Bowel UK and ERIC, The Children’s Bowel & Bladder Charity have jointly published guidance for school leaders, proprietors, governors, staff and practitioners on managing bladder and bowel issues in nurseries, schools and colleges (PDF).

Guidance for health providers

The Paediatric Continence Forum (PCF) has provided a handbook for the commissioning and running of children’s community continence services (PDF). This shares information about setting up and running community-based paediatric continence services for commissioners, service planners, clinicians and managers (PCF, 2019)².

In Wales, the Welsh Government has published guidance on the care of children and young people with continence problems (Welsh Government, 2017)³.