Jonathan says “Often hospitals have cheaper car parking charges for patients. Make sure you understand whether or not this is the case and how it works.”

• Plan the practicalities of your appointment, planning to arrive at least 10 minutes early, so you don’t end up in a rush on the day. How will you get there? Is parking available and what is the cost? Let the surgery or hospital know if you have access or interpreter needs.
• Do you know which doctor you’ll see? If it’s important to you to see the same doctor whenever possible, request this beforehand by phone or in person.
• Carefully read and follow any instructions you’ve been given beforehand. For example, for some procedures you may be asked not to eat or drink beforehand. If you’re having a computed tomography (CT) or magnetic resonance imaging (MRI) scan, you shouldn’t wear metal.
• Collect any information requested. When you see a specialist for the first time, they may well want your and your family’s medical history. Note down the names and doses of any medicines, supplements or vitamins you take. If you have a smartphone, you could take photos of bottles/packets to show. Or, you could take the medicines with you in a bag.
• Write down your symptoms or 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?
• Note down information you want your doctor to give you at the appointment. Prioritising the two or three questions that are most important to you can help you to focus on the day.
• If you want to cover multiple points, consider asking whether a longer appointment is possible. Many GP surgeries can offer a double slot.
• Would you like a friend or family member to come along to your appointment? If so, ask. Their support could help you feel more confident, and they could help remember key points.

• At the appointment, use your notes. These will help you to give your doctor as complete a picture as possible and to focus on what’s important for you.
• Be open and honest about your symptoms and concerns –­ don’t underplay or exaggerate them. This might mean discussing things you find embarrassing but that it’s important for your doctor to understand.
• Be brave – don’t wait until the end of the appointment to speak up. By sharing your symptoms and concerns early on, you’ll have more time to discuss them properly.

• If you’re going to have tests or a procedure, make sure you understand what will happen. This will help you feel more calm and confident. Ask questions whenever you need.
• Have you been given clear information on the benefits and risks? For example, how might the procedure or treatment help you? How serious and common are the risks? What if you choose not to go ahead?
• If your doctor asks you to think about joining a research study or having your details entered on a registry (e.g. ADPKD Patient Registry or ARPKD Patient National Registry) ask what’s involved and about the pros and cons so you can think it through.
• When you’re given a new diagnosis, test results or other key information, ask your doctor to repeat or explain things differently if you don’t understand at first.
• 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 you’re given or, if you prefer, ask permission to record the discussion on your phone. You can also ask your doctor to print out useful information and provide a copy of your notes, their reports and any letters to other healthcare professionals.
• Ask if there are leaflets you can take home or websites you could read later if you’d like to find out more.
• Don’t forget to ask who you can contact if you have questions later.

• If you need a moment to think things through, ask for some time to do this. It’s fine!
• Take a moment to ask yourself whether you understand new information fully. Is there any information your doctor has forgotten to provide such as how to take your medication or when you should come back? Our list of common questions below may help you here.
• Before you go, double check your notes – have you forgotten anything?

• Write down new questions you have after your appointment. You may be able to ask them over the telephone or by email, or you could request a follow-up appointment.
• If your symptoms worsen or you have side effects, don’t wait until your next scheduled appointment to tell your doctor. Seek medical attention when you need it.
• If you don’t receive test results or a referral when expected, call the surgery or hospital to check on progress. Occasionally, results are delayed or overlooked, so a gentle reminder can help.

Claudia says “I keep a notebook handy or use an app on my phone to note down anything I want to mention at my next appointment.”

Below are some of the questions you may want to ask at appointments to check your kidney function.

• Has my kidney function changed?
• How quickly is my condition progressing? (When might I need have dialysis/transplant?)
• I my blood pressure healthy?
• Do my test results show any other changes?
• Do I need to make any changes to my treatment?
• When is my next check-up?

• What are my treatment options, and what are the benefits and risks of each?
• Are there any risks to my health if I don’t go ahead with treatment?
• Are there any serious side effects? What should I do if I experience these?
• How often should I take my medication and what is the right dose?
• What should I do if I forget to take my medication at the right time?

• What can help to lessen the symptoms/side effects I’ve been experiencing?
• How can we improve/maintain my quality of life?
• What support might I need from friends and family and how might this affect their own lives?
• Should I change my diet or lifestyle?
• Where can I get more information or support? (You could ask for a referral to a genetic counsellor, dietitian, counsellor, psychologist or pain specialist if you think this would help you.)

You can get more information from the PKD Charity with the below hyperlinks, or by contacting us on 0300 111 1234 (weekdays, 9-5pm) or 

• How is ADPKD diagnosed?
• Treatments for ADPKD
• Living well
• ARPKD basics