When your child is diagnosed with chronic kidney disease the world can seem a confusing and frightening place. At a time when you may already be feeling tired and in shock you have to try to make sense of lots of information, interact with a team of professionals, look after your child, have time for your other children and still deal with a whole range of commitments which are part of life, such as work and finances.

  • you may feel isolated, bewildered and confused
  • you may not be able to stop worrying or crying
  • you may wonder if you have done something to cause your child’s condition
  • you may question if you could have prevented it
  • you may feel others are judging you.

You are not alone in experiencing these things; lots of parents tell us they go through a very wide range of feelings and thoughts.

What you are dealing with is huge – no-one expects their child will have a serious illness.

You never think this is going to happen to you. You take your child’s health for granted.

You are also not alone in the day to day management of your child’s condition and treatment – every member of the hospital team are here to help you and support you every step of the way.

Our team is made up of doctors, nurses, dietitians, play specialists, pharmacists, administrators, social workers and housekeeping staff. 

Have a look here to see who is in the team and what they do.

Anyone in the hospital team will listen to your questions and help you find the information you need.  If they don’t know the answer they will find someone who does.

Your questions are important no matter how unimportant you may think they are – it’s always better to ask than to worry over something.


Finding the information you need

It is important to find the information you need about your child’s condition and it is natural to look on the internet to search for answers but children are affected in different ways even though they have the same condition.  Some websites may not give you the right information or may not be up to date.

The hospital team are the best people to give you advice as they know exactly what condition your child has and how it is likely to affect them.


Taking it all in

It is often hard to take in  information when we are on top of things but when we are worried, stressed and struggling emotionally it can be even harder to remember what has been said and what is expected of us.

When you think of a question jot it down on your phone, iPad or note book so you can have it with you when you see one of the professionals involved in your child’s care

In a similar way make notes when you are being given information when on the phone, in clinic or in hospital, it can be difficult to remember what has been explained to you and your notes will help you to remember.

Ask someone to come with you for support if you are worried about going to appointments on your own

Some other practical tips which may help you are found in other places on this website: