Being faced with kidney information or decisions, from first diagnosis and beyond, can be overwhelming and complex – both for the person with kidney issues and those supporting them.
Many people become a ‘carer’ of someone with little notice or support. Often the focus is on your loved one and their kidney disease. You may be a spouse, partner, parent, sibling, child or friend. The Carers KIN tries to help you make sense of their condition as well as helping you. You are not alone.
The information on this site has been recommended by families and friends or ‘carers’ with a range of kidney-related experience. Here you can find links to services and groups others have found helpful and personal stories about living alongside kidney disease. We also have a private Facebook group for kidney carers where we have our own place to ask questions and share.
Carers KIN is run by people with experience supporting those with kidney disease.
If something is missing, let us know! We are actively creating new material and love new ideas.
Many family and friends often feel unheard by the healthcare system. Carers KIN aims to provide you information, resources and support to help your voice be heard.
Share your experience in Carers Stories.
Join the Carers KIN Facebook group to ask your question. We have loads of experience and will help you find an answer.
Below, please find some resources specific to caring and the Carers KIN community to help you. If you are interested in general kidney resources that apply to everyone, please click here.
Read about Amina’s experience of finding financial and well-being support.
This leaflet from York City Council and York and Scarborough Teaching Hospitals NHS Trust covers the ups and downs of being a carer.
Get helpful information about costs and expenses related to kidney disease.
Sometimes it’s hard to know what to ask or who to ask, but finding people who understand how kidney disease impacts you is important.
“When my partner was first diagnosed with CKD it was like entering a new world with no map. Working out what it meant for him and me was very worrying. . . Carers KIN would have helped me realise I wasn’t alone and help me make sense of what was happening and maybe highlighted things I hadn’t thought of.”
“It makes me feel visible and empowered as a carer. With information available quickly and in one place for those that need it.”
“To me, Carers KIN offers information, support and friendship. It’s to everyone’s benefit if carers are enabled and empowered – if they wish – to play a full part in the care of the patient.”
