she s got a nebulising machine and she has a feeding pump and her oxygen concentrator. all of this life saving equipment costs over £6 a day to run and the family s energy bills have risen to £225 a month. charlotte worries about what her daughter s final few months will be like. we just want a simple life where we can enjoy ruby and she can enjoy the outside world, stay indoors if she needs to be, comfortably, rather than having to think about what we re going to forfeit for her to have pieces of equipment on. being disabled costs money almost £600 a month more according to one survey, and that s before the impact of rising energy bills. people are turning off power, parent carers are turning off essential equipment for their children s health in order to save money. this is a humanitarian crisis and it s only going to get worse. come here, this side. anne pridmore is mentally alert but physically unable, relying on personal assistance and kasey for her everyday needs. that s it.