When it all goes pear shaped 

Know your child’s rights

Children who have undergone a Mitrofanoff procedure have usually had many hospital stays and procedures. They become tired and sometimes frightened of being handled by strangers. They are little but they have rights too, empower them to control who touches them. Ask staff to ask your child before they approach them and to ask or share the following: 

  • Is it ok to look? 
  • What’s going to happen....... 
  • Does this hurt? 

Children will generally agree, but if they don’t then pushing the point will only damage their self-esteem and confidence. Find another way around the problem. 

Most nurses are exceptionally good at getting children on their side and have wonderful bedside manners. You will come across odd occasions when a nurse will rush to get a job done without giving much thought to their young patient. As a carer, it is your responsibility to be the voice of the child. If you can see that your child is frightened or apprehensive, interject and ask if perhaps they can give you the medication to give to your child. Once trust is lost between a child and a nurse you will have an uphill battle getting the child to co-operate, so preserve their natural trust in people and their innocence as much as you can by being a safe buffer zone for them.  

Hospitals have policies and procedures in place where as a patient, or a carer of a young person, you have the right to put in a formal complaint if you feel you were poorly treated, your wishes were not respected or your consent was not sought or given. Hospitals take complaints very seriously and will send an administrator to speak with you directly about your concerns.