These tips are for people with autosomal dominant polycystic kidney disease (ADPKD), their families and caregivers. They’re to help you get the most out of appointments with your doctor, kidney specialist and other healthcare professionals.

Health appointments can be stressful and worrying at times. You might sometimes come away confused or realize that you didn’t ask the questions you planned to.

Our check lists and example questions below can help you to feel confident and get the most out of appointments. This will help you to get the care, support and information you need to manage your health well.

Contents

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

• If you want to see a particular healthcare professional, call to ask.
• If you’ve been given a telephone or video appointment but would prefer to see someone in person, ask whether this can be changed. Likewise, it’s sometimes possible to swap a face-to-face appointment to a call or video.
• You might also be able to change the appointment day or time if it isn’t convenient but this might mean the date is later.
• If you need an interpreter, ask right away.

❑ Write down your symptoms and any treatment side effects.

• How long have you had them?
• How bad are they?
• What makes them better or worse?
• How are they affecting your life?

❑ Make a list of the questions you want to ask.

• Put the most important ones first.
• If you have a lot to discuss, ask for a longer appointment.
• For a list of example questions, see later on this page.

❑ Check whether you can take someone along if you’d like to.

• A friend or family member could help you feel confident. They can also help you pace the conversation, remember your questions and take notes. However, some clinics might not always allow this.

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

• How will you get to the surgery or hospital?
• Where are the nearest public transport stops?
• If driving, is there parking and what’s the cost?
• If you have access needs, ask for the support you need right away.

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

• 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 you’re going to have a test or procedure, make sure you understand what will happen.

• Read the letter carefully and follow the instructions given (such as not eating or drinking before the appointment).
• Contact the clinic beforehand if you’re unsure of anything. If contact details are not on your letter, call the main phone number for the hospital or surgery and ask to be put through to the department you’re due to visit.

❑ Collect any information requested.

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

❑ Pack drinks and snacks.

• If you might be waiting a long time for or between appointments, take drinks and snacks.

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

• Start with the most important points and tick things off as you go.

❑ Be open and honest about your symptoms and concerns.

• This might mean discussing things you find embarrassing. Don’t leave them until the last minute.

❑ 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 the doctor, nurse or pharmacist to print out useful information or provide a copy of your notes, reports and letters.

❑ If anything isn’t clear, ask for it to be repeated or explained differently.

• Some healthcare professionals are better at explaining things than others.
• If you’re confused, say so.
• You could also ask for a leaflet or a website to learn more.

❑ Ask about the benefits and side effects of treatments.

• For example, how might the procedure or treatment help you?
• How serious and common are side effects and risks?
• How can side effects and risks be reduced?
• Are there other treatment options?

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

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

❑ Who can you contact with questions?

• Is there a doctor, nurse or other healthcare professional you can contact by phone or email if you have questions?
• Alternatively, how can you book a follow-up appointment?

❑ If you need a minute or two to think things through, say so.

• For video calls, you could turn off your camera for a moment if this is more comfortable.

❑ 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 points back to the healthcare professional to check you understand correctly.

❑ Write down any questions you have after your appointment.

• You may be able to ask them by phone, video call or by email.
• Or you could request a follow-up appointment.

❑ If your symptoms worsen or you have side effects, tell a healthcare professional.

• Don’t wait for the next check-up if it’s not soon.

❑ 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.

❑ If you’re unhappy about the care you’ve received, 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).

Here are some of the example questions people ask at kidney check-ups.

About your test results

• Has my kidney function changed?
• How quickly is my disease progressing? (When might I need to have dialysis or a transplant?)
• Is my blood pressure healthy?
• Do my test results show any other changes?
• Can you explain what this word/result means?
• Do we need to make any changes to my treatment?
• When is my next check-up?

• What are my treatment options?
• What are the benefits, side effects and risks of each treatment option?
• Are there any risks to my health if I don’t go ahead with treatment?
• Are any serious side effects possible?
• What side effects should I look out for?
• What should I do if I get side effects?
• 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?

• What can help to lessen the symptoms or side effects I’ve got?
• How can we improve my quality of life?
• What support might I need from friends and family?
• Could I improve my diet or lifestyle?
• Where can I get more information or support? You could ask for a referral to a genetics counsellor, dietitian, counsellor, psychologist or pain specialist if you think this would help you.

• How is ADPKD diagnosed?
• Medications to treat ADPKD
• Living well with ADPKD

• The NHS has advice on online GP consultations, how to have a video call, and feedback and complaints.
• The National Kidney Foundation has a list of common terms used by kidney specialists.

Kidney Care UK has a good explanation of blood and urine test results.

All of our publications are based on references but these are removed for ease of reading on our webpages. A version of this webpage with references included is available upon request by emailing [email protected]

Written by Hannah Bridges, PhD, medical writer, HB Health Comms Ltd. Expert review by Sarah Borrows, Clinical Nurse Specialist Renal Genetics, Queen Elizabeth Hospital, Birmingham.

With thanks to all those affected by PKD who contributed to this publication.

Ref No: ADPKD.AT.V2.0
© PKD Charity 2025
First published: June 2025
Due to be medically reviewed: June 2028

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

If you don't have access to a printer and would like a printed version of this information sheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 9am–5pm) or email [email protected].

The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.