These tips are to help you and your child get the most out of appointments with his or her doctor, kidney specialist and other healthcare professionals. Our tips are written for parents of children with autosomal recessive polycystic kidney disease (ARPKD).
Appointments about the health of your child can be stressful and upsetting at times for them and for you. A lot of important information can be covered in a short time. It can be frustrating to walk away from an appointment realising that they or you didn’t say what you planned to, or that you have new questions. You may later struggle to remember the details from the appointment.
In light of the coronavirus (COVID-19) pandemic, you may have to do more appointments by telephone or online video. These can take some getting used to. You and your child can feel more in control, confident and focused by planning ahead and using some of our tips.
Giving your child control and support
How much your child can take part in or lead discussions and decisions will depend on their age and capabilities. Even for young children, it is good to help them play an active role in doctors’ appointments. This will help them to feel in control of their health and help them to grow the skills they will need to manage their ARPKD as they grow up.
In the tips below, we make some suggestions for how you can help your child feel confident and involved in appointments. By age 6, most children can answer questions about how they are feeling. By teenage years, most children can make decisions about their care themselves, although they may want your support, reassurance and advice.
You’ll have a better idea than anyone else of what is appropriate for your child, so use your judgment. You may be surprised by how much of the appointment he or she can manage on their own, when given the chance. Equally, if your child does not want to lead the conversation, or begins to struggle, be ready to offer the help they need.
Top tips for successful appointments
- Explain to your child what the appointment is about. If they are young, you may want to use a teddy or toy as a prop to act out a medical appointment or use colouring in pages. Your hospital might have produced videos to explain things that you can show your child (see the links at end of this fact sheet for examples).
- Give an honest answer if your child asks whether a procedure might hurt (such as a blood test).
- Check whether your child has any new symptoms. Write them down together. How long has he or she had them? How bad are they? What makes them better or worse? How are they affecting your child’s life?
- Check who your child would like to go to the appointment with (if there is a choice). They may have a relative they find particularly reassuring for medical visits. Equally, older children may want to have the appointment on their own.
- Prepare a list together of any questions you have for the doctor. Choose the most important questions together, and who will ask them.
Plan the trip
- Do you know which doctor you’ll see? If it’s important to you to see the same doctor whenever possible, ask beforehand.
- For face-to-face appointments, plan the practicalities of the trip, so you don’t end up rushing. How will you get there? Is parking available and what is the cost? Let the clinic know if you have access or interpreter needs.
- Ask your child which snack, drink and activities they would like to take for the journey (a game, book, video or colouring book for example).
- Asking your child to help you pack these can help them feel involved and ready.
- For younger children, remember a favourite toy that is comforting, as hospitals can be strange places for children.
- Check for any special instructions regarding coronavirus (COVID-19). For example, parents will be asked to wear a mask (unless you’re exempt). You might be asked not to arrive early, so that the waiting room does not become too busy.
- If you’re having a video call, check you have the invitation link and test out your set up ahead of time. Do your microphone and webcam work? Can you test out the videoconferencing system beforehand with a friend or family member? Is there a number you can call if you have technical problems on the day?
- Carefully read and follow any instructions you’ve been given before the appointment. For example, for some procedures your child may be asked not to eat or drink beforehand. If he or she is having a computed tomography (CT) or magnetic resonance imaging (MRI) scan, they shouldn’t wear metal.
- Collect any information requested. When you see a specialist for the first time, they may want your child’s and family’s medical history. Note down the names and doses of any medicines, supplements or vitamins your child takes. You could take photos of bottles/packets to show on a smartphone or take the medicines in a bag.
- If you have a lot to discuss, consider asking whether a longer appointment is possible. Many doctors’ surgeries can offer a double slot.
Jonathan says “Often hospitals have cheaper car parking charges for patients and their families. Make sure you understand whether or not this is the case and how it works.”
Give clear information
- At the appointment, use the notes you prepared together. These will help you and your child to give your doctor a complete picture and to focus on what is important to you.
- Let your child answer and ask questions themselves as much as possible. This will help them to feel in control and build their confidence about managing their health.
- It is ok to prompt your child or ask if you can add extra details if things get forgotten. However, try not to take over.
- Help your child to be open and honest about his or her symptoms and concerns. This might mean discussing things you or your child finds embarrassing but that it’s important for your doctor to understand. 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.
Check your child understands
- When your child gets new results or information, ask the doctor to repeat or explain things differently if either of you don’t understand at first.
- If your child is going to have tests or a procedure, make sure they understand what will happen. This will help them feel calm and confident. Encourage them to ask questions whenever they need.
- Have you and your child been given clear information on the benefits and risks of any tests and treatments? If not, ask for these (see our questions about kidney health below).
- Your doctor might offer your child the chance to join a research study or have his or her details entered on the ARPKD Patient National Registry. Ask what’s involved and about the pros and cons so you can think it through together.
- Check when and how you’ll receive any test results. Who can you contact if you don’t receive a letter/phone call when expected?
- Write down key details or, if you prefer, ask permission to record the discussion on your phone. Some video call systems also allow you to record the discussion (remember to ask first). You can also ask the doctor to provide a copy of your child’s notes, reports and any letters they write about your child’s care.
- Ask if there are child-friendly leaflets or websites that your child could read later if they want to know more.
- Don’t forget to ask who you can contact if you have questions later.
Pause for thought
- If you need a moment to talk to your child, get their preferences, and think things through, ask for some time to do this. It’s fine! For video calls, you could ask for a break (and press ‘mute’) to give you and your child a moment to talk.
- Take a moment to check your child understands new information fully.
- Is there anything the doctor has forgotten to provide, such as medication instructions or the next appointment date? Our list of common questions below may help you here.
- Before you go, double check the notes you prepared together — have either of you forgotten anything?
- Help your child to write down new questions they (or you) have after the appointment. You may be able to ask them over the telephone or by email, or you could request a follow-up appointment.
- If your child’s symptoms worsen or he or she gets side effects, don’t wait until their next scheduled appointment to tell the doctor. Seek medical attention when your child needs it. Use NHS 111 for advice if your child has new symptoms and you’re not sure what to do.
- If you don’t receive test results or a referral for your child when expected, call the surgery or hospital to check on progress. Occasionally, results are delayed or overlooked, so a gentle reminder can help. Remember to encourage older children to do this themselves — it may be daunting for them at first but is a useful skill to learn.
Claudia says “I keep a notebook handy or use an app on my phone to note down anything I want to mention at the next appointment.”
Asking questions at kidney check-ups
Here are some of the questions your child (or you) may want to 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 (questions for children to ask)
- How well are my kidneys working?
- How quickly is my ARPKD getting worse? (When might I need to have dialysis or a transplant?)
- Is my blood pressure okay?
- Do my test results show any changes?
- Do I need to change my treatment?
- When is my next check-up?
About new treatments (questions for children to ask)
- What treatments can I have? What are the good and bad things about each one?
- Might I get unwell if I don’t have the treatment?
- Are there any serious side effects? What should I do if I get these?
- How often should I take my medicine and what is the right dose?
- What should I do if I forget to take my medicine at the right time?
About my quality of life (questions for children to ask)
- What can help to reduce the symptoms or side effects I get?
- How can I stop ARPKD affecting my life too much?
- Should I change my diet, sports or hobbies?
- Where can I get more information or support? (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.)
More from the PKD Charity
You can get more information from the PKD Charity with the below links, or by contacting us on 0300 111 1234 (weekdays, 10.00 am to 4.30 pm) or
More information from others
Preparing for appointments
More about kidney health
- Guy’s and St Thomas’ NHS Foundation Trust has written The Little Book about Kidneys to explain kidney disease and treatment to children.
- InfoKID has information for parents and families of children with kidney diseases.