Patient Information

UKRR 22nd Annual Report summary for patients – analyses of paediatric data to the end of 2018

To download the summary of the 22nd Annual Report for patients (paediatric data) please click here.

I am very excited to introduce the first summary focusing on kidney data of children under 16 and 16-18 years old. A big thank you to the Renal Registry for collecting and summarising the data from all 13 paediatric kidney centres in the UK. The report reflects data from the period prior to the coronavirus pandemic and provides an invaluable insight into the numbers of children affected with kidney disease, their treatment and outcome.

Kidney failure is a cruel disease. It affects many individual milestones, growth and weight, and everyday choices: from what we can eat and drink, to managing medication and appointments. This is done while still trying to create as many normal experiences for our children, participating in family events, hobbies and even school trips and holidays. But these things are possible to achieve with
support. The report highlights that the total number of children in the UK with kidney failure has increased, reflecting that many children are living longer with the treatment they are receiving. These children then transfer to adult services, most with a functioning kidney transplant. As a mother of a child who started dialysis at the age of 6 months, I know how far science has come.

I hope you, like myself, find the data in this report informative. As parents of kidney patients, we start this journey with no or little information, therefore any reliable and up to date data is empowering. It allows us to have discussions with professionals to ensure the right choices for our children.

We are living through unprecedented times, where our routines and our choices have been greatly affected: from having to protect and shield the vulnerable, to delays in transplants. These experiences will help us to start a discussion about the future choices of our children, in partnership with different professionals involved, including schools and social care. We need to ensure an approach that is flexible but also holistic.

If you would like to give feedback on this report or get involved with the Renal Association, please do get in touch. Only by getting involved will we make our voices heard and make a difference for all those affected by kidney disease.

Kamal Dhesi, member of the Renal Association Patient Council