Finding information, support and advice about your child’s lung condition
When your child is diagnosed with a lung condition you might have lots of appointments to attend. Life may feel as though it has suddenly changed.
But there is support available. Talking to the right people can help you cope. It’s important to remember many long-term conditions can be well managed. In many cases, your child can lead a full life.
There are people and organisations you can talk to for information, advice and support:
- Family and friends
- Your child’s GP
- Other health care professionals
- A multi-disciplinary team (MDT)
- Support networks
- Online information: can I trust it?
- Health charities
- Your employer
Your family and friends might deal with your child’s diagnosis in different ways. 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 may often be the first person you talk to when you’re worried about symptoms. They can diagnose some conditions themselves and give you advice about managing your child’s health. Take a look at our information on taking your child to the doctor.
Your GP 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. Mind has useful information on looking after yourself while caring for someone else.
Debby, one of our helpline nurses, has written a blog on how to ask for an urgent appointment when your child needs one.
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 a multidisciplinary team (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 health care professionals who will work with you to make sure your 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, a psychologist, and pharmacists.
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.
We’ve set up a Parent and Carer Support Network to provide a space for parents and carers of children with all lung conditions to come together. It’s a safe and friendly place to talk to other people who understand what you’re going through. Members can listen to children’s respiratory experts, ask questions, learn about the latest information, and research available and share first-hand experiences. The network is available to all parents and carers, wider family members, medical professionals and students, teachers, or those of you who have a deep connection with children who have a lung condition.
You could also join our online community which is available 24/7, whenever you need it. You could also search online for other support networks or charities for different conditions or look for groups specific to your child’s condition through social media.
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. Remember: not everything you find will be helpful or even accurate. Here are some things to think about:
- The NHS, our website and other online information 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 that can offer specialist information on your child’s lung condition.
We have developed information on a range of childhood lung conditions through our quality-assured production and review process. Take a look at the different conditions we cover and how we produce our information.
Our helpline is there for you. Call 0300 222 5800 – we’re available Monday to Friday, 9am to 5pm.
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 if your employer thinks time off is affecting your work, they may want to talk to you. There’s more advice about taking time off work to care for children on the Gov.uk website and the ACAS website.