It’s good to help children play an active role in their health appointments, even when they’re young. This can help them feel in control of their health. It will also help them build the skills they’ll need to manage their ARPKD as they grow up.

How much your child can take part in, or lead, chats and decisions about their health will depend on their age and skills. You’ll need to judge what’s right for them. It might also help to chat to other parents and guardians of children with ARPKD in our ARPKD Facebook group.

By age 6, most children can answer questions about how they feel. Most teenagers can make choices about their care themselves, although they may want your support and advice.

You may be surprised by how much your child can manage on their own when given the chance. Equally, if your child doesn’t want to lead the chat, or begins to struggle, be ready to offer help. Encourage them over time to get more involved.

In the tips below, we give some ideas on how you can help your child feel confident and involved in appointments.

Prepare together

❑ Explain to your child what will happen.

• If they’re young, you could use a teddy or toy to act out a medical appointment or use colouring pages. Your hospital might have a video to explain things to children (see the links at the end of this page for examples).
• Give an honest answer if your child asks whether a procedure might hurt.

❑ Check whether your child has any new symptoms.

• Write them down together. How long have they had them and how often? How bad are they? How are they affecting your child’s life? Does anything make them better or worse?

❑ Check who your child would like to go to the appointment with (if there’s a choice).

• They might find that a particular relative is most reassuring for medical visits. Equally, older children may want to go on their own.

❑ Together, prepare a list of questions for the doctor.

• Choose the most important questions together, and who will ask them. If you have a lot to discuss, ask for a longer appointment. There’s a list of example questions to ask at kidney check-ups later on this page.
• For older children, respect their choice if they want to prepare this list alone.

❑ Are you happy with the appointment details? If not, request changes.

• If you want to change arrangements for the appointment, call to ask. The clinic will help if they can.
• Changes could include the doctor you see, whether the appointment is face-to-face, telephone or video, and the day and time.
• If you or your child need an interpreter, ask early for this to be arranged.

❑ Plan the trip so you don’t end up rushing.

• How will you get to the surgery or hospital? Is parking available and what is the cost? Plan your route with extra time for possible delays. If you have access needs, ask early for support to be arranged.
• Ask your child which snacks, drinks and activities they’d like to take for the journey and waiting room (for example: a game, book, video or colouring book). Younger children may like to take a favourite toy for comfort. Ask your child to help you pack these to help them feel involved and ready.

❑ For video and phone appointments, plan to be somewhere quiet, private and with a good signal.

• Think through the logistics of how you and your child will both be involved in video and telephone calls. Request a video call, if possible — this is an easier way for everyone to be involved. If a phone call is the only option, use a speaker phone if you can.
• Make sure your phone and computer have enough battery. For video calls, check you have the invite link and do a test run if possible. Is there a number you can call for technical support?

❑ If your child is going to have a test or procedure, make sure you prepare correctly.

• Read the letter carefully and follow any instructions given (such as your child not eating or drinking beforehand).
• The surgery or clinic might ask for a urine (wee) sample. Ask the receptionist if one is needed when you arrive. If so, you can plan the best time for your child to go to the toilet and drink more liquid if needed.
• If your child is worried by blood tests, chat to the surgery or clinic about what can help. For example, the clinic may have a play specialist who can help your child have a better experience. Or the clinic might be able to give you a numbing cream to put on your child’s arm before the appointment starts. This means less time waiting for the cream to work during the appointment.
• Contact the clinic beforehand if you’re unsure of anything.

❑ Collect any information the doctor has requested.

• When your child sees a specialist for the first time, they may want your child’s and family’s medical history.
• Make a list of the names and doses of any medicines, supplements and vitamins your child takes. If easier, you could take photos or take the packets with you.
• If you have extra information to share, get this ready. For example, you might have measurements of your child’s blood pressure or weight.

❑ Explain that you have some notes you’ll be using together.

• This can help you both to focus. Start with the most important points and tick things off as you go.

❑ Let your child answer and ask questions themselves if possible.

• This will help them to feel in control and build their confidence in managing their health. It’s okay to prompt your child or to ask if you can add extra details if things get forgotten. But try not to take over.

❑ Help your child to be open and honest about their symptoms and concerns.

• This might mean discussing things you or your child find embarrassing. For older children, respect their privacy and offer to leave the room if there are things they don’t want to discuss in front of you.

❑ Write down key details.

• It’s easy to forget details after an appointment, so write things down. If you prefer, ask if you can record the discussion on your phone. Some video call systems allow you to record the discussion (remember to ask first). You can also ask your doctor to print out useful information or provide a copy of your child’s notes, reports and letters.

❑ Check your child understands.

• Ask the doctor to repeat or explain things differently if either of you don’t understand.
• Encourage your child to ask questions when they need.
• Ask for a child-friendly leaflet or a website where your child can learn more.

❑ Ask about the benefits and risks of any treatments the doctor recommends.

• For example, how might a procedure or treatment help your child? How serious and common are the risks? Are there other options?

❑ Check when and how you’ll get your child’s test results.

• Who can you or your child contact if you don’t receive a letter or phone call when expected?

❑ Who can you or your child contact with questions?

• Is there a doctor or nurse who you or your child can contact by phone or email? Alternatively, how can you book a follow-up appointment?

❑ If you need a moment to chat to your child, say so.

• You might want to pause to get your child’s preferences and think things through together. For video calls, you could ask for a break (and press ‘mute’) to give you and your child a moment to talk.

❑ Check your notes.

• Have you covered everything? If you’re out of time but have more questions, ask for a follow-up appointment.

❑ Repeat key information back to the doctor to check you and your child understand correctly.

❑ Check how your child is feeling.

• Was there anything that worried them?
• Give them reassurance, support and love after the appointment.
• Check how they’re feeling a while later, when they’ve had time to think.

❑ Write down any new questions you and your child have.

• Help your child to write down new questions they (or you) have after the appointment. You may be able to ask them by telephone, video call or email. Or you could ask for a follow-up appointment.

❑ If your child’s symptoms worsen or they have side effects, tell the doctor.

• Contact the team to let them know. Contact details are normally on letters from the clinic.
• Don’t wait for your child’s next check-up if it’s not soon. Use NHS 111 for advice if your child has new symptoms and you’re unsure what to do.

❑ If you don’t receive test results or a referral when expected, call the surgery or hospital.

• Sometimes, results or referrals are delayed or overlooked. A gentle reminder can help. Remember to encourage older children to do this themselves — it may be daunting for them at first but it’s a useful skill to learn.

❑ If you or your child are unhappy about their care, give feedback or make a complaint.

• It’s your choice whether you do this, but it can help services improve. For GP surgeries, you could contact the practice manager or ask the receptionist how you can give feedback or complain. For hospitals, you could contact their Patient Advice and Liaison Service (PALS) to get started.

Here are some of the common questions people ask at kidney check-ups. We have written these for your child to ask, but you may need to ask some of these questions on their behalf, depending on their age.

About my test results

• How well are my kidneys working?
• How might my kidney health change in the next few years?
• Is my blood pressure okay?
• Do my test results show any changes?
• What does this word/result mean?
• Do we need to change my treatment?
• When is my next check-up?

• Do I need any treatments? What are the good and bad things about each one?
• Could I get unwell if I don’t have treatment?
• Could the treatment make me unwell by causing side effects?
• What side effects should I look out for? What should I do if I get them?
• What can help with any symptoms or side effects I get?
• How often should I take my medicine and what is the right dose?
• What should I do if I forget to take my medicine?

• How might ARPKD affect me at school and at home?
• How can I manage my ARPKD well so that it doesn’t affect my life as much?
• What foods and drinks are good for me?
• Are there any sports or hobbies that I need to be careful about doing?
• Are there more people who can help me manage my ARPKD? (You could ask to see a doctor who is an expert in what to eat, how to cope with your feelings, or how to manage pain, for example.)

• What is ARPKD?
• Genetic counselling and testing

For parents and guardians

• The NHS has advice on online GP consultations, how to have a video call, and feedback and complaints.
• Alder Hey Hospital has a leaflet giving hints and tips for parents on their child going into hospital.
• At Coloring Nation, you can download colouring pages for your child on many themes, including doctors and hospitals.
• Teens in Hospital is a guide for doctors about talking to teens, but parents may find it helpful too.
• InfoKID has information for parents and families of children with kidney diseases.
• The National Kidney Foundation has a list of common terms used by kidney doctors.
• Kidney Care UK has a good explanation of blood and urine test results.

For children

• Edge Hill University has a video for children about visiting hospital.
• The Teapot Trust has produced a video for children on having a blood test.
• What? Why? Children in Hospital has videos for children on blood tests, CT scans, MRI scans, X-rays and more.
• The NHS has information for children younger than 16 years on the rules about parents and guardians seeing their medical records.