Finding information, support and advice about your child’s lung condition
You might have lots of appointments to attend and life may feel as though it has suddenly changed.
“It’s incredibly helpful to have a chance to talk to people who’ve been through the same things,”
says Fiona, who runs the PCD Family Support Group.
But there is support available. Talking to the right people can help you cope. It’s important to remember that many conditions can be well managed. In many cases, your child can lead a normal life.
People and organisations you can talk to for information, advice and support:
- Family and friends
- Your family doctor
- Other health care professionals
- A multi-disciplinary team (MDT)
- Support networks
- Online information
- Health charities
- Your employer
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 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 look after yourself mentally and physically.
It’s vital to protect your children from breathing in smoke, especially if they have a problem with their breathing. So, if you or family members are smokers, ask about help to stop smoking.
Take a look at our information on taking your child to the 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
- a physiotherapist
You can read more about these roles below.
Check out our information on managing your child’s condition for some useful questions you might want to ask.
If your child needs more support, they may be referred to a team of specialists, sometimes called an MDT. The team will include health care professionals with a range of skills.
- 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 clearing the lungs, breathing exercises, or with exercise and movement
- an occupational therapist to help your child stay independent and active
- 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.
Some people find online forums very helpful and supportive. Others may find them overwhelming, and that’s OK too. Remember that another child with the same condition may have different experiences from your own. Ask a health care professional about anything you’re not sure about.
Anyone can publish health information online. Not everything you find will be helpful or accurate. Here are some things to think about:
- The NHS, health charities and websites recommended by your health care professional will have information you can trust.
- Check to see if websites have references or links to back up their claims, and a date when their information was last updated.
- If the website is published outside the UK, statistics and treatment information may not be relevant.
- Is the site trying to sell you something? If so, the information it provides may not be trustworthy.
It can help to find out more about what your child’s diagnosis means and how it will affect your child. There are a number of charities and organisations, including the British Lung Foundation, which can offer specialist information on your child’s lung condition.
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.