Understanding the NHS and your child's IBD care

When your child is diagnosed with inflammatory bowel disease (IBD), understanding how the healthcare system works can help you feel more confident supporting them. In the UK, the National Health Service (NHS) provides most IBD care, from diagnosis and medication to specialist appointments and hospital treatment.

As a parent or carer, you may have questions about who will look after your child, how to access support, what happens during appointments, and what to do if their symptoms get worse. Understanding the NHS and the professionals involved in your child’s care can help you navigate the system and make sure they receive the support they need.

🏥 What is the NHS?

The National Health Service (NHS) provides healthcare for people living in the UK. Most NHS services are free at the point of use, although some charges may apply, depending on where you live and the service you need.

The way healthcare is organised varies across the UK:

• England: NHS England and local integrated care systems support the delivery of healthcare services.

• Scotland: NHS Scotland provides healthcare through regional NHS boards.

• Wales: NHS Wales delivers services through local health boards.

• Northern Ireland: Health and Social Care (HSC) provides healthcare and social care services.

Although the systems differ, children with IBD generally receive care from a combination of primary care services, hospital specialists and other healthcare professionals.

Your child’s care pathway will depend on their age, diagnosis, symptoms, location and the services available in your area.

👩‍⚕️ Who will be involved in your child’s IBD care?

Children and young people with IBD often receive care from a multidisciplinary team. This means different healthcare professionals work together to manage their condition and support their overall wellbeing.

Your child’s team may include:

• Paediatric gastroenterologist: A doctor who specialises in digestive conditions in children, including Crohn’s disease and ulcerative colitis.

• IBD nurse specialist: A nurse who provides information about IBD, helps with medication questions, supports you during flare-ups and may be your main point of contact.

• Dietitian: A specialist who helps your child meet their nutritional needs, manage dietary challenges and maintain healthy growth.

• Paediatrician: A doctor who oversees your child’s general health and may help coordinate their care.

• Psychologist or mental health professional: Someone who can help your child manage anxiety, stress, low mood or the emotional impact of living with a chronic condition.

• Surgeon: A specialist who may become involved if surgery is being considered.

• Pharmacist: A healthcare professional who can explain medications, possible side effects and how treatments should be taken.

Not every child will need support from all these professionals. Your child’s team will depend on their individual needs and treatment plan.

🩺 How your child is diagnosed and referred for care

If your child develops symptoms such as persistent diarrhoea, abdominal pain, blood in their stools, unexplained weight loss or poor growth, their GP may arrange initial investigations and refer them to a paediatric gastroenterology service.

Diagnosis may involve blood tests, stool tests, endoscopy, imaging or other investigations. These help the medical team determine whether your child has Crohn’s disease, ulcerative colitis or another condition.

If IBD is suspected, your child may be referred to a specialist hospital team for further assessment and treatment.

If your child has already been diagnosed, their specialist team will usually coordinate their ongoing IBD care. Your GP may continue to help with general health concerns, vaccinations and other medical needs.

If you are worried about your child’s symptoms while waiting for an appointment, contact your GP or the relevant healthcare service for advice. Seek urgent medical help if your child becomes seriously unwell.

📅 What to expect from IBD appointments

Regular appointments help your child’s team monitor their condition, assess how well treatment is working and identify potential problems before they become more serious.

During appointments, the team may:

• Ask about abdominal pain, bowel movements, fatigue and other symptoms.

• Review medication, side effects and treatment adherence.

• Check blood and stool test results.

• Monitor weight, height, growth and nutritional health.

• Discuss school, friendships, emotional wellbeing and everyday activities.

• Adjust treatment or arrange further investigations if needed.

The frequency of appointments will depend on how active your child’s IBD is, their treatment and whether they are experiencing complications.

You can help by keeping a record of symptoms, medication changes and questions between appointments. If your child is old enough, encourage them to share their experiences and participate in conversations about their care.

💊 Understanding your child’s IBD treatment

IBD treatment aims to control inflammation, manage symptoms, support healthy growth and help prevent complications. Your child’s treatment plan will depend on their diagnosis, disease severity and individual circumstances.

Treatments may include:

• Medicines: These may include aminosalicylates, corticosteroids, immunomodulators or biologic medicines, depending on the type of IBD and the treatment required.

• Nutritional treatment: Some children, particularly those with Crohn’s disease, may be offered exclusive enteral nutrition, which involves receiving nutrition through prescribed liquid feeds for a period of time.

• Monitoring: Regular blood tests, stool tests and sometimes imaging or endoscopy help assess inflammation and treatment response.

• Surgery: Some children may need surgery if medicines are not effective or complications develop.

Your child’s specialist team should explain the purpose of their treatment, how to take it, potential side effects and what monitoring is required.

Never stop or change prescribed medication without discussing it with your child’s healthcare team. If you are concerned about side effects, contact the team for advice.

📞 Who to contact if your child’s symptoms get worse

Knowing who to contact during a flare-up or when new symptoms develop can make a difficult situation less stressful.

Your child’s IBD nurse or specialist team is often the best first point of contact for concerns related to their IBD. Ask for their contact details, including any advice line or out-of-hours arrangements, and find out what to do if you cannot reach them.

Contact the team if your child experiences worsening abdominal pain, increased diarrhoea, blood in their stools, persistent fatigue, reduced appetite or other symptoms that concern you.

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

Call 999 or go to A&E if your child is seriously unwell, collapses, has difficulty breathing or develops other life-threatening symptoms. If you are unsure where to seek help, NHS 111 can provide advice in England; equivalent services and arrangements differ across Scotland, Wales and Northern Ireland.

Do not wait for a routine appointment if you are concerned that your child needs urgent medical attention.

🏫 Getting support for your child at school

IBD can affect school attendance, concentration, energy levels and participation in everyday activities. Working with your child’s school can help ensure they receive appropriate support without feeling unnecessarily singled out.

Depending on your child’s needs, support may include:

• Immediate access to toilets without having to ask in front of classmates.

• Permission to leave lessons when symptoms occur.

• Access to drinking water and suitable snacks or meals.

• Flexibility around attendance, deadlines and missed schoolwork.

• Rest breaks when fatigue becomes difficult to manage.

• Support with medication or medical appointments.

• A plan for managing symptoms during school trips, exams and other activities.

You can ask to speak with your child’s headteacher, pastoral lead, school nurse or special educational needs coordinator (SENCO), depending on the support required.

In England, some children with significant health needs may benefit from an individual healthcare plan. Additional educational support may also be available where IBD substantially affects learning or attendance. Arrangements differ across the UK.

With your child’s agreement, where appropriate for their age and understanding, share relevant information with school staff so they know how to support them.

💷 Understanding prescription costs and financial support

Although NHS treatment is generally free at the point of use, some families may face costs associated with prescriptions, travel to hospital appointments, parking, special dietary needs or time away from work.

Prescription charges and exemptions differ across the UK.

In England, NHS prescriptions are usually free for children under 16 and for young people aged 16–18 who are in full-time education. Other exemptions and support schemes may also apply. NHS prescriptions are free in Scotland, Wales and Northern Ireland.

Depending on your circumstances, you may be eligible for help with healthcare travel costs, benefits or other financial support. Your eligibility will depend on where you live, your household circumstances and the relevant scheme.

If hospital appointments create financial difficulties, ask your hospital team or local support service about available assistance. You can also find further information through the relevant NHS website or your local council.

🧑‍🤝‍🧑Your role as a parent or carer

Supporting a child with IBD involves more than managing appointments and medication. You may also be helping them cope with uncertainty, fatigue, embarrassment, school pressures and the emotional challenges of living with a long-term condition.

You can support your child by:

• Learning about their condition and asking questions when something is unclear.

• Keeping a record of symptoms, appointments and medications.

• Encouraging your child to share their concerns with their healthcare team.

• Helping them understand their treatment in an age-appropriate way.

• Seeking emotional support for them when needed.

• Looking after your own wellbeing so you can continue supporting them.

As children grow older, they can gradually take more responsibility for their care. This transition should happen at a pace that suits their age, maturity and individual needs.

You do not need to know all the answers. Your child’s healthcare team should help you understand their condition and make informed decisions together.

🔄 Transitioning from paediatric to adult IBD care

As your child approaches adulthood, their care will eventually move from paediatric services to adult gastroenterology services. This is often called transitioning care.

Transition is usually a gradual process rather than a single appointment. It helps young people develop the confidence and skills needed to manage their condition more independently.

Your child may gradually learn to:

• Understand their diagnosis and treatment plan.

• Recognise symptoms that need medical attention.

• Order prescriptions and manage medication.

• Arrange appointments and communicate with healthcare professionals.

• Understand their healthcare rights and responsibilities.

Ask your child’s IBD team when transition planning will begin and how they will coordinate the move to adult services. The timing and process vary between hospitals and across the UK.

Planning ahead can help reduce anxiety and ensure your child continues to receive appropriate care without unnecessary disruption.

💙 Where to find reliable NHS and IBD support

Finding trustworthy information can help you feel more confident when making decisions about your child’s care.

Useful resources include:

• NHS website: General information about Crohn’s disease, ulcerative colitis, symptoms, investigations and treatment.

• Crohn’s & Colitis UK: Information about IBD, treatment, practical support, education and living with the condition.

• Your child’s IBD team: Personalised advice about symptoms, medication, appointments and treatment decisions.

• Your hospital’s patient support services: Information about financial assistance, emotional support and navigating local services.

For information specific to your part of the UK, use the relevant NHS website and ask your child’s healthcare team about local services.

🌟 Helping your child get the care they need

Understanding how the NHS works can make managing your child’s IBD feel less overwhelming. Knowing who is involved in their care, how to access advice and what support is available can help you feel more prepared when challenges arise.

Every child’s experience of IBD is different, and their needs may change over time. Keep asking questions, stay in contact with their healthcare team and speak up if something does not feel right.

You are an important part of your child’s care team. Working together with healthcare professionals can help your child manage their IBD, maintain their wellbeing and enjoy as much of everyday life as possible.

This article is for general informational purposes only and is not intended to replace professional medical advice, diagnosis or treatment. Every child’s experience of IBD is different, and healthcare services, eligibility and support may vary across the UK. Always consult your child’s healthcare team for advice specific to their needs. If your child experiences severe or concerning symptoms, seek appropriate medical attention. Information about NHS services and financial support may change, so check official sources for the most up-to-date guidance.