You’ll also be allowed to stay with your child while they are having their treatment. There are lots of distractions around, like music, mobiles and toys and you can bring in your child’s favourite games. If there’s anything at all that you’re worried about, talk to the nurses – they’re there to help.

For young babies you will be supplied with bottles and teats. Most hospitals have a selection of baby foods and ready-made bottles of infant formula. If you wish to provide your own then sterilisation equipment can be made available.

Whilst your child is in hospital they will be given regular physiotherapy sessions by the paediatric physiotherapists.

If you are receiving income support or family support benefits then you may be able to claim your travel costs. It is important that you take a letter that shows that you claim one of these benefits. You will be given access to a number of other members of staff as required. Please ask your nurse to arrange it for you:

  • Paediatric Respiratory Nurse Specialists – he/she can offer support and advice to families with PCD children.
  • Paediatric Social Workers – the social workers offer help and advice to parents and families. They can offer information about sources of help available and, where appropriate, support parents with applications, such as for financial assistance, and help when dealing with statutory and voluntary organisations like housing associations.
  • Interpreters – the hospital can arrange for interpreting services if you think you or your child will need them whilst you are staying in hospital. If possible please let the hospital know before your stay and which language you need the service for.

Some children who require frequent intravenous antibiotics may be offered a portacath, a device surgically implanted in the upper chest, just below the clavicle or collar bone, to allow easier access to the bloodstream. These devices last for approximately for 10 years if they are properly maintained. When they are not being used they have to be “flushed” once a month – this will either require you going to the hospital or sometimes the community nurse will come to your house.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.