Resources and support for new parents

You should already be in contact with someone from your CF team, and gradually you’ll meet everyone. They will be the key partners to support you with your baby’s care.

For many families, the CF specialist nurses will be key healthcare workers – responsible for coordinating care and support on behalf of the CF team. They will answer any questions you have, guide you on how to give your baby medicines and organise clinic appointments.

One CF nurse told us: “I’m very used to reading emails from new parents when I arrive at work that they have sent in the early hours of the morning when they have a question that’s keeping them awake at night.”  

Your CF team will be a source of support as you’re finding out more about CF, discovering what works best for your child and family, trying out new approaches and adapting as your child grows and their treatment routine changes.

Your child will have a CF team that they will see regularly, especially in the first year of diagnosis. How often you go to clinic will depend on your child’s health, and you may have home visits and phone calls in-between clinic visits too.

The team includes several different health professionals and can include doctors, CF specialist nurses, dietitians, physiotherapists, pharmacists, psychologists and social workers.

They are experts in CF and will be able to advise you on any questions or worries you have about your baby – whether you’re struggling to tell the difference between a wet cough and a dry cough, or you’re unsure of how to give your baby a prescribed antibiotic.

I relied on the CF nurse as a point of contact for all support.

– Tiffany, whose son Joseph, 5, has CF

The support of the CF team, along with Cystic Fibrosis Trust is more than I could have asked for.

– Mithun, whose daughter Dhyuti, 8 months, has CF

It’s useful to establish a good relationship with your local pharmacy staff. They will deal with many of your baby’s prescriptions and it is helpful if they, over time, are able to understand what medications need to be issued and why.

Many parents have emphasised the help that an understanding pharmacist can offer. They can also be sympathetic to your personal circumstances and will help if they can.

One single mum of a child with CF explained to us that she was once told by her pharmacist that her child’s prescription would be ready at 8pm that night, but once she explained that she was parenting alone and her baby should be in bed at that time, they rearranged future collection times.

I’ve had to learn to be more assertive. I explain my circumstances and then I’m offered other options.

– Lorraine, single mum to Aiden, age 13

Some medications will need to be provided by the hospital, or via a homecare medicines delivery service that will deliver them to your home.

Helpline

Like all parents, you’ll be learning as you go – and it might help to talk to someone who understands CF. Contact our Helpline for a listening ear and information by calling 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm. You can also email [email protected], message us on Whatsapp on 07361 582053 or chat on our socials.

Get in touch

Information

We offer free, balanced information about all aspects of life with CF, both on our website and in our information resources.

Along with the advice from your specialist CF team, our online content and publications can help you make informed decisions about your child’s lifestyle, treatment and care.

All our information is written and reviewed by experienced information and health professionals.

Take a look at our information resources

Financial support

Cystic fibrosis can bring financial worries, but support is available. 

We can give expert advice to help you find your way through the benefits system and understand how you can boost your household income, to make sure everyone with CF has the basics they need to stay as well as possible.

We also have a range of grants, which can help at challenging times.

Find out more about the financial support we offer

Our online community

On our forum people affected by CF can share experiences, connect, and support each other in a safe, private space.

The forum features a wide range of topics, which makes it easier to find the discussions you’re interested in, while avoiding those you’d rather not be a part of.

Join the conversation

New diagnosis information & support emails 

We’re here to support your family every step of the way. If you would like to hear from us regularly, you can sign up to receive our information & support emails by visiting cysticfibrosis.org.uk/xxxxx and clicking on the email sign-up button.

We’ll send you relevant information about all things CF, stories from other families, the latest developments in research, and ways we can support you, such as through our online events, Helpline and financial support services.

Although your child will receive their CF care at a specialist CF centre, like all families you will also have contact with your local GP.

It’s helpful to try to build up a good relationship with your practice so they understand you and your baby’s needs. Sometimes your local practice may not have had experience dealing with patients with CF and so your relationship may need to be more of a partnership, with you sharing your CF knowledge and experience.

Cystic fibrosis can be an isolating condition for families. The risk of cross-infection means parents of children with CF cannot meet up as easily as they might like, and often miss out on the chance to talk to someone who knows how they feel.

When you feel the time is right, connecting with other parents and families who have a child with cystic fibrosis and share the same worries as you can be invaluable.

You might like to:

• speak to a trained volunteer who also has a child with CF through our CF Connect programme
• read about other people’s experiences in our magazine, CF Life
• connect with people on our social channels
• find out about the events we offer for parents/carers and children
• chat to other families by joining our forum 
• ask your CF team if they can connect you with other families affected by CF.