Your child’s IBD care team: Who does what?

When your child is diagnosed with inflammatory bowel disease (IBD), you will likely meet several healthcare professionals who each play an important role in their care. From diagnosing Crohn’s disease or ulcerative colitis to managing medication, nutrition and emotional wellbeing, these professionals work together to help your child stay as healthy as possible.

Understanding who does what can make it easier to know where to turn when you have questions or concerns. It can also help you feel more confident when making decisions about your child’s treatment and supporting them through everyday life with IBD.

Your child’s care team will depend on their individual needs, age, treatment plan and the services available in your area of the UK.

👩‍⚕️ Your child’s paediatric gastroenterologist

A paediatric gastroenterologist is a doctor who specialises in digestive conditions in children and young people, including Crohn’s disease and ulcerative colitis.

They often lead your child’s specialist IBD care and oversee their diagnosis, treatment and long-term health.

Your child’s paediatric gastroenterologist may:

• Diagnose IBD and explain what the condition means for your child.

• Arrange investigations, such as blood tests, stool tests, endoscopies and scans.

• Develop and review your child’s treatment plan.

• Prescribe medication and monitor how well it is working.

• Assess inflammation, symptoms, growth and potential complications.

• Discuss treatment changes if your child experiences a flare-up or their current medication is no longer effective.

• Refer your child to other specialists when additional support is needed.

Appointments are an opportunity to discuss how your child has been feeling, any changes in their symptoms and concerns about their treatment.

It can be helpful to write down questions before appointments and bring a list of your child’s medications. If your child is old enough, encourage them to share their own experiences and ask questions, too.

🩺 The IBD nurse specialist

An IBD nurse specialist is often one of the most important contacts for families managing a child’s IBD. They have specialist knowledge of inflammatory bowel disease and can provide practical advice and support between hospital appointments.

Depending on your hospital, the IBD nurse may be your first point of contact when you have concerns about your child’s condition.

Their role may include:

• Explaining IBD, treatment options and what to expect.

• Answering questions about medication, side effects and taking treatments correctly.

• Advising you about changes in symptoms and when further medical assessment is needed.

• Helping coordinate appointments, investigations and treatment.

• Providing advice about managing flare-ups and knowing when to seek urgent help.

• Supporting your child with practical issues, including school, activities and everyday life.

• Helping your child gradually develop confidence in managing their condition as they get older.

Your IBD nurse may also help you understand blood and stool test results or explain what happens next after an investigation.

A useful tip: Ask your child’s team for the IBD nurse’s contact details, usual working hours and any out-of-hours arrangements. Find out how to get advice if symptoms worsen and you cannot reach the nurse directly.

Not every hospital has the same nursing services, so it is worth checking what support is available locally.

🥗 Dietitians and nutrition support

Nutrition is an important part of caring for a child with IBD. Inflammation can affect appetite, nutrient absorption and growth, while some children may need additional nutritional support during a flare-up or as part of their treatment.

A specialist dietitian can help you understand your child’s nutritional needs and develop an approach that supports their health, growth and everyday life.

A dietitian may help with:

• Monitoring weight, height and growth.

• Making sure your child gets enough energy, protein, vitamins and minerals.

• Managing nutritional challenges when symptoms affect eating.

• Identifying and addressing nutritional deficiencies.

• Providing advice about food, hydration and maintaining a balanced diet.

• Explaining nutritional treatments, including exclusive enteral nutrition (EEN), when appropriate.

• Supporting your family if your child has a restricted diet or struggles to eat enough.

Some children with Crohn’s disease may be offered EEN, which involves receiving all their nutritional requirements from prescribed liquid formula for a set period. This is a recognised treatment option for some children and should be supervised by their specialist team.

There is no single diet that works for every child with IBD. Restricting foods unnecessarily can make it harder for children to meet their nutritional needs, particularly while they are growing.

If you suspect certain foods make your child’s symptoms worse, speak to their dietitian or IBD team before making significant dietary changes.

🧠 Mental health and emotional support

Living with IBD can affect more than your child’s physical health. They may feel anxious about symptoms, embarrassed about needing the toilet, frustrated by missing school or worried about being different from their friends.

Some children also find it difficult to cope with uncertainty, hospital appointments, medication or the possibility of flare-ups.

Emotional support can help your child manage these challenges and feel more confident living with a long-term condition.

Depending on your child’s needs, support may come from:

• A psychologist: Can help your child develop coping strategies for anxiety, stress, low mood or difficult emotions associated with IBD.

• A counsellor or other mental health professional: May provide a safe space to talk about worries, friendships, body image and the impact of illness.

• The IBD nurse or paediatrician: Can discuss emotional concerns and help you access appropriate support.

• School pastoral staff: May help your child manage worries about attendance, symptoms, friendships and schoolwork.

You do not need to wait until your child is struggling significantly before asking for help. Early support can make it easier for them to express their feelings and develop useful coping strategies.

As a parent, you may also find IBD emotionally demanding. It is understandable to feel worried about your child’s health, treatment or future. Ask your child’s team about support available for parents and carers, too.

🏥 GPs, pharmacists and other healthcare professionals

Although your child’s hospital team usually oversees their IBD treatment, other healthcare professionals can play an important role in supporting their overall health.

Your child’s GP

Your GP can help with general health concerns that are not necessarily related to IBD. They may also support vaccination planning, assess new symptoms and help coordinate care with hospital specialists.

It is important to keep your GP informed about your child’s diagnosis and medication. Some medicines used to treat IBD affect the immune system, so your child’s healthcare professionals need to consider their treatment when advising about infections and vaccinations.

For concerns directly related to IBD treatment, contact the specialist team where appropriate.

Your pharmacist

A pharmacist can help you understand how to use medicines safely and correctly. They may explain how and when to take medication, discuss possible side effects and help identify potential interactions with other medicines.

If you are unsure whether a medicine is suitable for your child, particularly an over-the-counter treatment, check with their pharmacist or IBD team before giving it to them.

Other healthcare professionals

Depending on your child’s needs, their wider team may also include:

• Paediatric surgeons: Involved if surgery is being considered or required.

• Radiologists and endoscopy teams: Carry out or interpret investigations that help assess the condition.

• Hospital pharmacists: Support the safe use of specialist medicines and treatment monitoring.

• School nurses and educational support staff: Help your child manage IBD-related needs during the school day.

Not every child will need all these professionals. The aim is to provide the right support for your child at the right time.

📞 Who to contact with different concerns

When your child has IBD, it can sometimes be difficult to know which healthcare professional to contact. Knowing where to start can help you get appropriate advice more quickly.

Here is a general guide to help you decide who to contact.

Your child’s hospital may provide a dedicated IBD advice line or email address. Ask the team how quickly they usually respond and what to do outside normal working hours.

When to seek urgent help

Contact your child’s IBD team promptly if their symptoms worsen or you are concerned about a possible flare-up.

Seek urgent medical assessment if your child has severe or worsening abdominal pain, significant bleeding, persistent vomiting, signs of dehydration or a high fever alongside worsening symptoms.

If your child is seriously unwell, collapses or develops potentially life-threatening symptoms, call 999 or go to A&E. NHS 111 can provide advice in England when you are unsure where to seek help; arrangements differ across Scotland, Wales and Northern Ireland.

Do not wait for a routine appointment if your child needs urgent medical attention.

🤝 Making the most of your child’s care team

Building a good relationship with your child’s healthcare team can make managing IBD feel more manageable. You do not need to know everything yourself, and you should feel able to ask questions whenever something is unclear.

There are several simple ways to make the most of the support available.

Keep a record of important information

Keep a note of your child’s medications, allergies, symptoms, appointments and any changes you notice. You may also find it useful to record questions as they arise so you remember to discuss them at appointments.

Ask questions when you are unsure

If you do not understand a diagnosis, test result or treatment recommendation, ask the team to explain it in a different way. You can also ask about the benefits and risks of treatment options and what to expect next.

Know who your main contact is

Find out who to contact with routine questions, concerns about symptoms and urgent problems. Keeping these details somewhere easy to find can save time when you need advice.

Involve your child in their care

As your child grows older, encourage them to take part in conversations about their condition. They might start by describing their symptoms, asking a question during an appointment or learning the names of their medicines.

Giving children an age-appropriate role in their care can help them feel heard and prepare them for managing their condition more independently in the future.

Share information between healthcare professionals

Where appropriate, make sure relevant professionals know about your child’s diagnosis and treatment. This can be particularly important when they see their GP, attend another hospital or need treatment for an unrelated illness.

Speak up if something is not working

If you are struggling to access support, have concerns about your child’s treatment or feel that an important issue has not been addressed, raise it with their IBD team. You can ask for clarification, discuss your concerns or find out whether additional support is available.

Your child’s needs may change over time, and their care team should help you navigate those changes.

💙 Remember, you are part of the team

Your child’s IBD care team brings together different areas of expertise to support their physical health, emotional wellbeing and quality of life.

Knowing who does what can help you find the right support, ask informed questions and feel more confident when managing your child’s condition.

You know your child better than anyone else. Your observations, questions and concerns are an important part of their care, and you should feel comfortable sharing them with their healthcare professionals.

With the right support and a good relationship with their care team, your child can learn to understand their IBD, manage the challenges it brings and take an increasingly active role in their health as they grow.