Finding support and advice about your child's lung condition
Dealing with a new diagnosis can sometimes be lonely and overwhelming.
You might have a lot of appointments to attend and life may feel as though it has suddenly changed a lot.
But there’s lots of support available. Talking to the right people can help you cope. It’s important to remember that many conditions can be well managed and, in many cases, your child can lead a normal life.
This information explains some of the people you can talk to.
Family and friends
Members of your family might deal with your child’s diagnosis in different ways so try to keep talking about how you can support each other and your child.
It might help to talk to your family and friends about your child’s condition and look at our information together.
Your family doctor
Your child’s GP will often be the first person you talk to when you’re worried. They can diagnose some conditions themselves and give you advice about managing your child’s health.
Your doctor can also help you with your own health. It’s easy to forget about your own needs but you’ll cope much better if you’re mentally and physically well.
Take a look at our information on getting the most out of your doctor.
Your child may be referred to one or more specialist health care professionals by your GP.
These could include a paediatrician, a doctor who specialises in children’s health, a specialist nurse or a physiotherapist. You can read more about these roles below.
Take a look at our section on getting organised for some useful questions you might want to ask.
A multi-disciplinary team (MDT)
If your child needs more support they may be referred to a team of specialists, sometimes called an MDT. The team will contain a range of different health care professionals.
- Respiratory paediatrician. A doctor for children who is a specialist in children’s lung and breathing conditions. You may need to be referred to one outside your local area.
- Specialist paediatric or paediatric respiratory nurse. A nurse who specialises in children and, in some cases, children with lung and breathing conditions. They may run the clinic you attend for your child’s check ups.
- Therapists. There are different kinds of therapists who will work with you to make sure you child is doing as well as they can in different areas of development. Depending on their needs your child might be referred to:
- a physiotherapist to help with exercise and movement, including breathing exercises
- an occupational therapist to help your child stay independent and active in their daily activities
- a speech and language therapist to help with your child’s feeding and speech and language development
- Technicians and physiologists will carry out any assessments and tests your child needs.
- Other professionals should be available if you need them. These might include a dietician, an audiologist and a psychologist.
Talking to other parents who have children with lung conditions can help you feel less isolated. They can often answer questions and give useful tips and advice.
Our children’s lung conditions section has links to support networks and charities for different conditions.
You might also find it helpful to chat to parents in our online support community.
If you are working, ask your employer about your organisation’s policies on taking leave for appointments or if your child is ill.
You’re allowed to take time off to deal with an emergency involving your child.
There are no limits to how many times you can take time off when you are caring for your child. But your employer may want to talk to you if they think time off is affecting your work.
There’s more advice about taking time off work to care for children on the Gov.uk website.