Communicating Lily's Pain - an animation for parents and professionals caring for children with profound cognitive impairment

Children who have complex health care needs and can’t communicate verbally rely on other people to know if they are in pain.

Usually, this will be their parents, who learn to recognise their child’s pain by being a constant presence in their life. Because every child is unique and responds differently to pain, there are no rule books and health professionals don’t always inform parents about the pain assessments available to them. Parents just ‘know’.

Most parents gradually develop this knowledge about their child’s pain over time. It is based on what they have learned from every episode of pain their child has experienced, and it continues to grow with their child. Parents say they never stop learning.

Even very skilled clinicians say that assessing pain in children whose responses are atypical can be tricky and complicated. Many will acknowledge that the best people to ask for clarification are the child’s parents – but this doesn’t always happen. Some parents say they don’t always feel like health professionals believe them when they say their child is in pain.