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As a parent carer there will be lots of things to think about when you are told your child has a life limiting or life threatening condition.

Getting a diagnosis

If you have just heard the news that your child has a life-limiting or life-threatening condition you will be in a state of shock and feeling overwhelmed. As well as feeling extraordinarily emotional you will have lots of questions, such as:

  • How do I tell my child about their diagnosis?
  • How do I tell others in the family?
  • What will the future look like for my child?
  • How will it impact on my child and others in the family, particularly any siblings?
  • How can I make sure my child and family have as normal a life as possible? 
  • How can I cope physically and emotionally?

A diagnosis should have been given to you via a face to face meeting in privacy and with someone there to support you. You should have been given the opportunity to ask questions about the diagnosis and prognosis and to have any concerns you have addressed. If this is not the case or if you have already been given a diagnosis but you feel it would be helpful to talk to the doctor at a follow up appointment then it is important that you ask for this as soon as possible.

Things to think about

  1. Ask for some allocated time with the doctor for an open and honest face to face discussion in a private room.
  2. Make sure you are not alone at the appointment. Take your partner, relative or friend with you.
  3. Jot down some questions to ask the doctor in advance as it is easy to forget what you need to know during the appointment. It is also helpful to jot down some notes during your discussion or ask the doctor to jot them down for you.
  4. Ask for written information to take away with you in a language which is easy for you to understand. Ask for an interpreter if necessary.
  5. Ask for information about support groups and available emotional support for yourself and your family in your local area.
  6. Consider who and how you are going to tell others outside the immediate family, for example school, wider family and friends. How might you need to prepare yourself for their reactions?