Together for Short Lives
Call the Helpline 0808 8088 100

Diagnosis or recognition

Coming to terms with the news that your child has a life-limiting or life-threatening medical condition is extraordinarily difficult.

If your child’s diagnosis was made recently you may find that things feel overwhelming at the moment. There is a lot that you may be worried about, such as what the future holds for your child and how you can help them to live as happy and “normal” a life as possible, how you can talk to your child about their diagnosis, and even how you yourself will cope.

While there are no easy answers to these questions there are places that you can find support and advice. Our free Helpline is available on weekdays between 10AM and 4PM on 0808 8088 100, and we have a library of helpful information and an online parents support group you can join. There are also many other charities and services that may offer support – our service directory will help you find one in your local area.

There is so much to think about when you have found out that your child is seriously ill that it is difficult to know where to start. For information to help you through those first days following the diagnosis, you can read pages 9-15 of our Family Companion, available online and in print. This is a good starting place to help you get an idea of what to expect as you adjust to caring for your child.

One of the most important things to think about is how you will talk to your child about their diagnosis. Instinctively you may feel you want to avoid this for as long as possible to protect your child, however research suggests it is often useful to begin having conversations with your child early in the process. Our leaflet Talking with your child about their life-limiting condition offers some suggestions and practical advice about how you might go about doing so, and addresses some common worries and concerns that many parents have.

If you have other children, it’s important to 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 as well. Our factsheet on Understanding Siblings’ Needs is a good place to start.

Talking to doctors and medical teams

The diagnosis of your child’s illness might have happened early in the course of the illness, it may happen years after your child first becomes poorly, or for some conditions an exact diagnosis may never be reached. Whatever your exact experience, the checklist below is useful if you are preparing for a key medical appointment or reflecting on a diagnosis that has already taken place.

  • Make sure that your medical team makes time available for open and honest face-to-face discussions, with the opportunity to ask questions in a private room.
  • Ask for copies of any letters written by the medical team about your child, so you always know what’s going on.
  • Try to write down questions you want to ask your doctor whenever they occur to you, to take along to your next appointment. Ask your doctor to write down the answers so you can look back at them.
  • A partner, relative or friend should come with you to offer support, so you are not alone at the appointment.
  • Ask for extra written material to supplement your discussion, so that you can review it after the appointment.
  • Information should be conveyed in a language you can easily understand, ask for an interpreter to be provided if necessary.
  • Ask for information about how you can find other services or support groups that might provide emotional support for yourself and your family
  • 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.

Get support

Whatever the exact circumstances of your family and your child’s illness, we know that this is one of the hardest things that anyone has to face. Please do remember that we are here to help you find support, so please, if you have any questions, don’t hesitate to send us an email or leave a message on 0808 8088 100 to speak to one of our team.