Together for Short Lives
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Diagnosis or recognition

Child in hospice sensory room

Receiving the diagnosis or being told that your child has a life-limiting or life-threatening condition is one of the hardest moments that any parent can face.

Sometimes diagnosis can happen early in the course a child’s illness, for others the diagnosis of a life-limiting condition can occur year’s after a child first becomes poorly. Whatever your exact experience, and whether you are preparing for a key medical appointment or reflecting on a diagnosis that has already taken place, the following checklist is worth reviewing and asking for from your medical care team:

  • Time available for open and honest face-to-face discussions and the opportunity to ask questions
  • A private room to talk in
  • A partner, relative or friend should come with you to offer support, so you are not alone at the appointment
  • Helpful written material to supplement your discussion
  • Information conveyed in a language you can easily understand, with interpreters provided if necessary
  • Emotional support for yourself and your family
  • Information about support groups

Top tips

  1. Ask for copies of any letters written by the medical team about your child, so you always know what’s going on.
  2. Write down questions you want to ask your doctor in advance, so you don’t forget. Ask your doctor to write down the answers so you can look back at them.
  3. If you have other children, make sure their needs are not forgotten during this stressful time. They will no doubt have lots of questions and will need time and support to understand and come to terms with their brother or sister’s condition. See our factsheet on Understanding Siblings’ Needs.
  4. If your child was diagnosed within the hospital setting, you should have an agreed transfer plan involving the hospital, community services and yourselves.  Make sure you have all the resources and equipment your child needs before leaving hospital.

For information to help you through those first days following the diagnosis, do read pages 9-15 of our Family Companion, available online and in print.  They provide comprehensive information, giving you an idea of what to expect from this stage of your journey.