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NICE publishes Renal Replacement Therapy Guidance

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After months of evidence review and extensive consultation, NICE (the National Institute for Health and Care Excellence) has published the first Renal Replacement Therapy (RRT) and Conservative Management Guidance.

About 60,000 people in the UK have kidney failure. We think about 5,000 of them will have polycystic kidney disease and will need RRT, either by dialysis or from a transplant. Some people choose not to have RRT, preferring supportive or palliative treatment – termed conservative management.

NICE wants to make sure that children, young people and adults with kidney failure get the best possible care and are able to choose the RRT option that’s right for them. The Guidance has a number of important recommendations:

  • About a year before your kidneys fail completely, you should be having discussions with your kidney care team about possible treatment options, including supportive treatment – giving you and your family time to make the decision that’s right for you and to plan and prepare.
  • Your care team should explain the risks and benefits of a kidney transplant and whether it could be a suitable option for you.
  • Your care team should help you understand the pros and cons of different types of dialysis and what they involve.
  • If you choose supportive treatment, your care team should explain the consequences of your decision and what to expect.

How to decide the best option for you

Your needs, preferences and wishes should be central to your decision about RRT. It’s known that when patients are involved in their own health care decisions, they experience better care. Your kidney care team should give you clear information and provide sufficient time to discuss options and listen to you carefully.

To help you decide, NICE suggest that you think about:

  • What matters most to you – what do you want to get out of your treatment and care?
  • How will each treatment option affect your day-to-day life?
  • What do you need to know about the treatments and their effects?
  • What happens if you don’t want to have renal replacement therapy?

Visit the NICE website to read the full guidance.

You can discuss RRT with other PKD patients and families by visiting the PKD Charity UK Facebook Group.

If you don’t use Facebook, we offer peer support by telephone. Find out more about our support services.

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