Good tools to help you plan
My Kidney Care
The app has been produced by Guy’s and St Thomas’ Kidney Patient’s Association and clinicians (from Evelina Children’s Hospital, Guy’s and St Thomas’ adult kidney service and Great Ormond Street Hospital). Development was in response to a survey asking young adult patients about their needs and preferences for engaging with health services as part of NHS Kidney Care’s Supporting Young Adults project. It has been designed to be both a hand held kidney care record and a self-management tool, allowing young adults to maintain accurate and accessible kidney care records including appointments and medications.
The CKD Pathway
The pathway has been produced by NICE Pathways .
This pathway covers the early identification and management of chronic kidney disease (CKD) in adults in primary and secondary care. It also includes a quality standard that covers the identification, assessment and clinical management of CKD in adults including the management of established renal failure, and other guidance produced on renal replacement therapy including transplantation and dialysis.
Two main types of dialysis are available: haemodialysis and peritoneal dialysis. The factors that usually determine what type of dialysis people choose are lifestyle preferences and feasibility. Because patients administer peritoneal dialysis themselves (children and some adults may need help from families or carers), it is a therapy that, with training, can be delivered safely in the home.
CKD is common, frequently unrecognised and often exists together with other conditions (for example, cardiovascular disease and diabetes). When advanced, it also carries a higher risk of mortality.
There is evidence that treatment can prevent or delay the progression of CKD, reduce or prevent the development of complications and reduce the risk of cardiovascular disease. However, because of a lack of specific symptoms people with CKD are often not diagnosed, or diagnosed late when CKD is at an advanced stage.
On average 30% of people with advanced kidney disease are referred late to nephrology services from both primary and secondary care, causing increased mortality and morbidity.
Strategies aimed at earlier identification and (where possible) prevention of progression to established renal failure are therefore clearly needed. The proportion of people with CKD starting home or hospital based dialysis, and peritoneal or haemodialysis treatment, varies considerably between renal units. This pathway seeks to address these issues. Find out more The CKD Pathway
Established Kidney Failure Decision Aid
This decision aid is to help you decide which treatment to have when your kidneys start to fail. If your kidneys stop working you may be told by your doctor that you have established kidney failure. This is sometimes called established renal failure (ERF), stage 5 chronic kidney disease (CKD) or end stage renal failure (ESRF).
You can choose between treatments that do some of the work of your kidneys (dialysis and transplant) or treatments that manage the symptoms of kidney disease (conservative care). This decision aid helps you think about which treatment option will be best for you to manage your kidney disease . Choose a treatment option that works best form you
To download an app for an Android phone or iphone click here
Good books
Help, I Need Dialysis! How to have a good future with kidney disease
A life-long kidney patient educator and an internationally-known nephrologist explain how dialysis works; each of the ways to do it; and how your treatment choice may affect your diet, energy level, work, travel, sexuality and fertility, sleep, and survival. Read more