The first point of contact for any queries regarding your or your child’s kidney disease should be the staff looking after him or her as they will have the information specific to you.
The internet now provides a vast array of information on all topics much of which is very informative. It must however be remembered that some information appearing on the internet may not be from reliable sources. There are a couple of sites which are recommended:
- A lot of work has been done by health professionals involved in the care of children with kidney disease to provide high quality reliable information to patients and parents and this is available at the infoKID’s website. It provides information on kidney diseases, tests, treatment and links to other resources.
- Your child may have been enrolled in a study looking at the genetic influence on their disease through the Radar rare disease registry. Their website also includes information for patients about the conditions being studied. Click on the "Patient Info" heading.
- Transition of patients with chronic kidney disease from paediatric to adult services can be a difficult time. The units in North and South Wales have programs in place to aid this process. Further information is available on the transition page.
- It is also possible to access your/your child's test results as well as medications and links to other information through the Patient View website. Speak to your paediatric nephrology consultant about getting access to this facility.
We would welcome input from patients and families about how the children's kidney services are organised in Wales. If you have anything you would like to say about the service, good or bad, or thoughts about how it might be improved then please speak to the consultant looking after you / your child or e mail either Dr Michelle James-Ellison or Dr Graham Smith.