General advice for caring for your PCD child
It is important for you to choose a school that meets your child’s educational and welfare needs. If possible, find a school that is close to home or is easy for you to collect them if they are poorly or need to attend a hospital appointment. Before your child starts at the school arrange to meet the headteacher and explain how the condition affects your child.
If your child requires physiotherapy at school find out if the school can do this. Then ask your Respiratory Nurse Specialist to arrange a school visit with a physiotherapist to explain what is required. Your Respiratory Nurse and Physiotherapist should also leave key literature on PCD for the school and teachers to reference to. If they cannot, ask your physiotherapist to review your current physio routine to see if any adaptations can be made.
Find out if the school is willing to dispense medication
What procedures are in place to ensure your child gets their medication
If your child has hearing loss, it may be beneficial to ask if they could sit at the front of the class. Are they able to access a bin near their desk to dispose of their tissues?
Can they leave the room to blow their nose, or go to the toilet to clear their chest?
Can your child not sit near the window with the sun on his/her back? This can cause overheating and then vomiting!
Does your child have special educational needs? If so, do they require statementing? For more information on statementing click on this link
Frequently missing school can have a significant impact on your child’s progress. Find out what procedures can be put in place for them to catch up or if your child can participate in lessons remotely such as via Google Classroom, Zoom etc. You could also ask whether it would be possible to send work home from time to time or whether teachers can record their lessons for your child to watch from home
What support will the school provide to your child so that he/she does not feel “different” to other children in the class / school?
Many children with PCD have periods when they cannot attend school. If it is a planned period (for example you know they are going to start IV antibiotic treatment) ask the teachers to provide you with some work/games to do in hospital or if your child is up for it, some class participation via virtual learning.
It is important that your child does not get behind in their basic literacy and maths skills. Whilst in hospital or off school try to read with them every day. Ask them questions about the story, the pictures and about the characters. To practice their writing skills get them to draw pictures and write a few words on them to send to grandparents and friends. Help them to develop their maths skills by counting the number of beds, nurses and then timing the nurses on how long it takes to give IV’s.
When your child returns to school arrange to borrow a friend’s books to copy any work that they have missed. Ask the teacher to provide any important work that is missed. If you think your child is not coping with their schoolwork, then highlight to the teacher as soon as you can.
Some children find it difficult to go back to school after a few weeks – try to keep in contact with their friends whilst they are absent to make the transition back to school easier.
It is important for children with PCD to experience ‘normal’ school activities and they should be encouraged to go on school trips.
If it is a day trip, make sure that your child has his/her medication with them and that they have sufficient food and fluids for the day. It is important that the teacher in charge is aware of their condition and that they are aware of any limitations your child may have.
If your child is going on a residential trip, then arrange to meet the person in charge of the trip.
It is important that your child continues to do their physiotherapy – you may have to train a teacher and give them written permission to do the treatment or go with them as a helper if this can be arranged.
Make sure that they have their medication (including inhaler, nebulisers and physiotherapy adjuncts) with them. They may find it useful to take some nappy sacks to put tissues in that they have coughed into and then they can seal the bag and dispose of carefully.
Many children with PCD have absences from school. This becomes more difficult to manage when you have started in Senior School and start your GCSE course work.
If you know you are going to be absent from school, ask the teacher to provide you with details of the course work they will be covering or whether you can join the classed remotely if you are feeling well enough. If you have unplanned absences on a regular basis then ask a friend to provide copies of their work/notes as soon as you return to school.
If you are doing a course that requires working on the school site such as D&T or Art – ask the teacher if you are permitted to work at lunchtimes or after school to keep up.
For a pupil to be considered for concessions at GCSE level, they need to have documented their special needs over several years. If your child regularly has time off school due to medical reasons it may be worth talking to the school about how concessions may be applied for at an early stage. It is advisable to keep a record of any absences from school, so it can be presented at the request of the examining board.
The joint council for the GCSE (standing agreement number four) advises that ‘Examining groups are required to take all reasonable steps to enable candidates with permanent, long-term, or temporary handicaps or indispositions to demonstrate their attainments.’ This means that under suitable safeguards, a grade can be awarded if a candidate is absent from an exam for legitimate reasons. Additional time may be permitted (normally up to 25%) for all types of examination.
If necessary, a candidate can receive treatment during a supervised break. Arrangements can also be made (subject to examining board approval) for candidates to take examinations outside their own centre (i.e., at home or in hospital).
Disabled candidates may be given additional time to complete course work or assigned a reduced amount of course work. Again, this is subject to the approval of the examining board. Many of the larger specialist hospitals have hospital schools who will be able to give you further information on this subject.
General Information about PCD for Schools
PCD is a rare genetic disorder that affects several systems in the body. It can lead to chronic infections of the lungs, nasal sinuses, and ears. Children with PCD generally have a wet cough and/or a runny nose; however, this is rarely contagious to healthy children. For people with PCD, a cough is essential for moving mucus out of the airways and should be encouraged, especially after exercise. Tissues should be available for the children to cough their phlegm into and blow their nose with throughout the school day.
Intermittent hearing loss is common in PCD, particularly during a cold. This is because cilia are partly responsible for clearing the ears of mucus. If the cilia do not work the build-up of fluid can result in recurrent glue ear. Whilst grommets are often used in the treatment of children with recurrent glue ear, in those with PCD they are found to be less beneficial. The treatment of this is therefore to monitor hearing regularly and support this with hearing aids if required. Whilst the PCD Service will regularly monitor the children’s hearing, if you have any concerns with their hearing or notice changes consistent with hearing problems such as unexplained disruptive behaviour, delayed speech development, lip-reading, talking loudly, failing to respond when called etc., please let their parents know.
Around 50% of children with PCD have a mirror image arrangement of their internal organs i.e., their organs are on the opposite side of the body to where they are normally. This does not affect the children on a day-to-day basis but might be important information to share in the event of an emergency.
Trapped mucus is a source for repeated infections and, for some children with PCD, this can result in multiple absences from school. Sometimes children are admitted into hospital for two weeks (or more) for intravenous antibiotics and intensive physiotherapy. During this time, the hospital school will be in contact with you to help ensure the child does not miss out on too much learning. Exams can be facilitated in hospital if necessary. We expect most children with PCD to have attendance levels within normal limits (>92%). As medical appointments do not count in unauthorised attendance figures, please ensure that the child is not excluded from any attendance award schemes if they only miss school for their hospital appointments.
Exercise, alongside physiotherapy, is key in helping improve mucus clearance. Children with PCD should be able to keep up with their peers and should be actively involved in physical activities and sports days. Occasionally, individual children may have asthma, in addition to PCD, and therefore they might need to use inhalers prior to exercise. This should not stop them participating in any sport. A small proportion of children with PCD also have associated heart problems and this may impact on their exercise ability. If this is the case the child’s parents will be aware of any limitations. Please remember to provide tissues so the child can clear their chest and nose during and after exercise.
- Seat the child at the front of the class facing the teacher to prevent any missed learning associated with hearing loss.
- Encourage the child to clear their nose before doing any class-based cooking/tasting sessions. This is important both for good food hygiene and as their sense of taste can be impaired due to a blocked nose.
- Provide tissues (and a place to clear their nose and chest in private if needed) as necessary. Gently prompt the child to clear their nose regularly as they may not be aware their nose is running. It is helpful for the child to be near a bin to dispose of tissues.
- Liaise with the hospital school during admissions to help the child keep up with their schoolwork.
- Ensure that children can drink freely to make their mucus/phlegm less thick and easier to clear. This is important especially during hot days.
- Children with PCD should be permitted to go to the toilet as and when necessary. Sometimes a bit of privacy is helpful if children need to clear mucus/phlegm from their chest. This should be actively always encouraged, as it is crucial to maintaining good lung health.