Information for the public

What information and support should we expect?

What information and support should we expect?

When your child is first diagnosed with a life-limiting condition, your care team should explain what this means and what changes to expect as time goes on. They should give you more information whenever you need it, and make sure you understand it.

Both you and your child will need chances to talk and ask questions, and your care team should make sure there is someone who is able to answer them. Whenever something new happens – like a change in your child's condition or the type of care they need – or if you feel worried or uncertain, a member of your team should ask if you want to talk.

They should be led by what you want to discuss. For example, what is most important to you and is there anything that particularly worries you? Is there anything you don't feel ready to discuss yet?

Everyone in your care team should be sensitive, honest and realistic, and open about anything in your child's condition or treatment that is uncertain.

Who will help explain things to my child?

Many of the professionals in your care team will be experienced in working with children. They may ask you first how much your child understands about their condition and what you are happy to discuss with them.

It might help to ask your child if there is someone in the care team they prefer to talk to. You should expect this person to:

  • talk to your child in a way they can understand – some children might prefer to explore information and ask questions using play, music or art, while others might want to use the internet or talk one-to-one with a trusted professional

  • adapt information to suit your child if they use a communication aid or need an interpreter

  • ask your child if they would like to involve someone close to them (like a friend, boyfriend or girlfriend) in their care, and help them think about how this person could support them.

Making decisions

Families should be kept at the centre of all planning and decision-making. Your care team should:

  • find out how you would like to be involved in decisions – you don't have to decide things alone

  • take time to listen to the beliefs and values that matter to you

  • give you time and support when difficult decisions are needed. You should not feel rushed and should have the information you need to decide.

There is more information on our website about involving people in their care. It also has advice about children and young people agreeing (giving consent) to treatment.

Questions you or your child could ask

  • Please explain more about my child's condition and how it is likely to change in the future.

  • Can you give us more information, like a leaflet or a website we can go to?

  • Are there any support organisations in our local area?

  • Can you help me explain things to my child?

  • Can you give us information suitable for my child's age and level of understanding?