Box 1 Example health state

Bedridden (Worst Health State)

Imagine that you are a parent or caregiver of a child with a severe medical condition. This medical condition means that:

 Your child is bedridden and unable to move by themselves. This means that your child is unable to lift and control their head, crawl, sit, or stand

 They are unable to feed themselves and may need to be fed through a tube

 They have very poorly developed muscle tone meaning their body, arms and legs are very floppy. This means your child is unable to grasps or hold onto things

 Your child will also frequently experience painful muscle spasms, and their arms and legs may move involuntarily with sudden jerking or twisting

 Your child screams constantly throughout the day and night

 Your child experiences something called an “oculogyric crisis”. This is where their eyes rotate or roll in unusual ways, similar to an epileptic seizure. These may last for up to several hours, several times a day

 Your child will have problems sleeping

 Your child will have severe abdominal problems, such as constipation or diarrhoea

 They will be extremely irritable and agitated

 Your child is unable to follow objects with their eyes and unable to recognise and interact with people. They can understand simple words but are not able to speak

 Other symptoms include severely blocked nose (“nasal congestion”), which may lead to serious chest infections, as well as excessive drooling, excessive sweating and extreme tiredness