Help and support Support for children and young people When your child is diagnosed with chronic kidney disease, it can be very difficult to process. You might feel the need to scour the internet for information, but it might not be what you are looking for. At the NKF, all of our information has been written and reviewed by respected nephrologists. Feel free to view and download any of the booklets on our site, which will help your child on their renal journey. We run the only free UK Helpline dedicated to kidney patients, with two full trained, experienced advisers providing a 5 day per week service to kidney patients, carers and healthcare professionals and renal units. The NKF Helpline is open from 9am until 5pm Monday to Friday on 0800 169 09 36. Ask 3 Questions 'Ask 3 Questions' is a campaign from the Health Foundation which aims to help patients become more involved in their treatment and care. The three questions are: What are my choices? What is good and bad about each choice? How do I get support to help me make a decision that is right for me? The 'Ask 3 Questions' campaign is about helping you feel in control of your care and is a part of a wider approach to self-care. Download the campaign poster here. InfoKID infoKID is an online information resource for parents and carers about kidney conditions in infants, children and young people. Useful infoKID links Dialysis - Dialysis uses special equipment or a machine to do what a healthy kidney does - remove waste products and excess water from the body. Haemodialysis - Haemodialysis (HD) is the most common type of dialysis. HD cleans the blood during kidney failure using a machine. Peritoneal dialysis - Peritoneal dialysis (PD) is one of the two types of dialysis. PD cleans the blood during kidney failure, using the lining of the abdomen. Fistula - A fistula joins an artery and a vein to form a larger, stronger blood vessel. Kidney transplant - A kidney transplant is a major treatment for children with kidney failure. A donor's healthy kidney is transplanted into the body. Deceased donor - A deceased donor is someone who has recently died and whose healthy kidney is quickly removed to be transplanted. Living donor - A living donor is someone who donates one of his or her healthy kidneys. Healthy eating after a kidney transplant - This page contains important advice to hep your child have a healthy body weight. This will reduce the risk of heart disease and other health problems later in life. Feeding your baby or child with chronic kidney disease - It is important that your baby or child with CKD feeds or eats well. Good nutrition is essential for their growth and healthy brain development. It gives them strength to fight illness and infections. www.infokid.org.uk Looking after your kidneys Video produced by Sheffield Children's Hospital. Digital Learning Materials Raise awareness of organ donation! Here is a printable PDF which you can print to colour in with the children and get the conversation going on how important it is to help others. KidsKidneyDiet App The KidsKidneyDiet app has been developed by dietitians at Great Ormond Street Children's Hospital. If you are a child or teenager who has kidney disease or has had a kidney transplant, the app will help you understand what food and fluid is best for you and your kidney, in a fun and interactive way. The KidsKidneyDiet app includes four sections: Potassium Phosphate Salt Fluid Your dietitian will tell you which section is important to you. Three sections have a game to play and all sections have text to read. The phosphate and fluid sections also have a video to watch of a child who has chronic kidney disease and who comes for haemodialysis at Great Ormond Street Children's Hospital. You can download the app for free via Apple's App Store. Please note that the app is only available on Apple devices. Ready Steady Go Website https://www.readysteadygo.net Peritoneal Dialysis at Home (PD) How long does it take?Every night 10-12 hours while asleep Haemodialysis in Hospital (HD) How long does it take?3 times a week4 hours (need to miss school)Plus travel time Home Haemodialysis (HHD) How long does it take?4+ times a week4-5 hours, flexible timings EMEESY is the children's renal and urology network for South Yorkshire, the East Midlands and the East of England. Their main specialist service is at Nottingham Children's Hospital but they have established links with consultant paediatricians and shared care clinics in local hospitals throughout the region. EMEESY has an area on their website for parents and carers. Use the below links to navigate to the six sections in that area. Help, my child has kidney disease! How you might feel Support from family and friends Coming to hospital Money issues Benefits www.emeesykidney.nhs.uk Contact Contact support families with the best possible guidance and information. They bring families together to support each other. They help families to campaign, volunteer and fundraise to improve life for themselves and others. https://contact.org.uk Helpful Videos We would like to thank EMEESY for permission to use the above two videos. Kidney Kids supports Patients in Scotland only, to vist their website Click here Grown-ups with Kidney Failure: A Guide for Children by Cathy Holman Facebook support group, this group is KDARS for Kids (Kidney Disease and Renal Support) https://www.facebook.com/groups/750940214926395/ KDARS "Teen Beans" Support Group This is a support group for young people aged 13 to 18 who are living with CKD and renal issues. To join the group click here Teen Beans The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only.