Where to Go from Here

This handbook has described what can be done to control pain in children with cancer. Its purpose is to give parents a better understanding of both new and tested ways to make children with cancer more comfortable.

But what should parents do if their child is suffering pain and they feel not enough is being done?

There are three steps that may be effective in these cases. First of all, tell the nurse or doctor what you are concerned about. Ask what more can be done for your child. You may want to ask about specific pain control methods. There are several possible reasons why these aren't being used, including the following:

  • Your child's case is different and needs a different approach.
  • The service or product isn't available. It may be difficult to obtain services such as anaesthesia or psychology in your unit.
  • Some of these approaches are very new and your unit may not be aware of them yet.
  • Something has been missed. People who work with children's cancer are very concerned about their patients, but they are not perfect. Drawing attention to a problem may be all that is needed to correct it.

If you are still unhappy with your child's pain control, ask for a specific time to discuss pain. Don't try to catch people on the run. Make a list of your concerns. Try to be clear about your concerns, without being angry or hostile. You and the staff are all on the same side.

The second step is to get together with other parents, perhaps through your local Candlelighters group. Contact professionals who know about pain control. Invite experts to talk to your group, and invite local health professionals to attend. Read about the latest in children's pain. Learn everything you can.

Third, work with the doctors and nurses to make changes. Decide what changes are needed and develop a plan for action. Your lobbying of the hospital administration, insurance companies, or politicians may help the clinic get the resources it needs to provide better pain relief.

We sincerely hope this book helps you and your child manage pain from cancer. As we said at the beginning, keep it handy. You will find it helpful to re-read different parts over the course of your child's treatment