Being diagnosed with a long-term condition like chronic kidney disease (CKD) can feel overwhelming. You will probably have to take on a lot of new information, and make some big decisions about your treatment.
You have rights as a patient and it is important that these are respected by your healthcare team. You also have responsibilities towards healthcare professionals and other patients.
These rights apply to people in the UK who are treated on the NHS. They may not apply if you have private medical treatment or are being treated in another country.
Your healthcare rights
Your rights as an NHS patient are set out in the NHS Constitution.
You have the right to receive free healthcare. This includes GP and hospital care, including dialysis, transplant or conservative care. It may also include free prescriptions. For more information on prescriptions see our leaflet on Welfare benefits & financial support.
You have the right to be treated equally, with dignity and respect, regardless of gender, race, age, ability, religion, sexual orientation or cultural background.
You have the right to be treated by qualified and experienced staff in a suitable clean and safe environment.
You have the right to receive appropriate medication and treatment that has been recommended by the National Institute for Clinical Excellence (NICE) for use in the NHS. This includes vaccinations that are provided by the national immunisation programme.
The NHS must be honest about any mistakes that are made. If something goes wrong during your treatment you have the right to know about it and to receive an apology if needed.
If you're not happy with an NHS service, you can make a complaint. You have the right to complain and to have your complaint acknowledged within three working days. You have the right to be kept informed of the progress and outcome of your complaint. You can find out more making a complaint on the NHS website.
You have to right to decide to accept or refuse a medication or treatment that your healthcare team offer to you. Your healthcare team should explain your condition and treatment options and give you time to make a decision.
You have the right to ask questions if something is not clear or to ask for a second opinion. Your healthcare team should not pressure you into making a decision or to choose one form of medication or treatment over another.
You should not be given any treatment or have any form of physical examination unless you have given your consent (agreement). If you cannot make healthcare decisions for yourself, your family members or friends may become actively involved in making these decisions on your behalf.
For more information see our leaflet on Capacity and chronic kidney disease.
You have the right to access your own health records. There may be a charge for this. If there are any factual errors in your records, you have the right for them to be corrected.
You have the right to privacy and confidentiality. Any information about your condition and treatment should be kept safe and secure. No one outside of your healthcare team should have access to your information unless you give your permission for it to be shared, for example with a friend or relative.
For more information and support about your rights as a patient contact your local Patient Advice and Liaison Service (PALS). PALS can help in various ways, including helping you with health-related questions and giving you information about the NHS.
What are my responsibilities as a patient?
Alongside rights, you also have responsibilities as an NHS patient.
You have a responsibility to:
- Treat NHS staff and other patients with respect.
- Provide your healthcare with accurate information about your health.
- Keep your appointments, or give sufficient notice if you need to cancel so they can be offered to someone else.
What should I expect in my healthcare appointments?
Early stage CKD (stages 1 to 3)
Most people with CKD stages 1 to 3 manage the condition themselves with support from their GP and do not need any specialist care from kidney doctors.
You should have annual checks with your GP to monitor your condition and overall health.
At each visit you should have your weight and blood pressure measured and a sample of your urine should be checked for signs of blood, protein or infection. You should also have a blood test to measure your kidney function and check for signs of anaemia.
Your GP should discuss any symptoms you may be having and whether any treatment is needed.
Advanced CKD (stages 4 to 5)
If your CKD progresses to stage 4, you should be referred to a kidney doctor (nephrologist) at a hospital for further treatment.
This could include dialysis, a kidney transplant or conservative care. Your kidney team should give you support and advice to help you understand your treatment options.
You should have regular blood and urine tests to monitor your health. Your kidney team should discuss any symptoms you may be having and whether any additional medication is needed.
Some foods that are high in salt, potassium and phosphate can be harmful to your kidneys. Your kidney team should tell you if you need to lower the amount of potassium in your diet. A dietitian can give you specialist advice on how you can adapt your diet if needed.
How can I make the most of my appointment?
There are different ways to make the most of your appointments.
Think about putting all your healthcare information in one place so it's easy to access.
If you use a calendar or a diary, put your appointments in as soon as you receive them to you can keep track of them.
Before your appointment, write down any questions that you want to ask your healthcare team and anything you want to discuss with them. This may include:
- Any symptoms you may be having
- Changes in your situation that may affect your treatment
- Any concerns or difficulties you may be having
Consider bringing someone with you to your appointments. They can make notes for you to help you remember what is said.
Appointments over the phone or on a video call are now common. Find out how to get the most out of your remote appointment with our guide:
More advice and information
- The Patients Association provides online information and guidance to help patients and carers navigate the UK's health and care systems.
- Routes to rights is a project that helps adults affected by long-term or serious health conditions understand their legal rights.