As an ex-user of two childrens' hospices (my younger brother was the sick one but the service benefits the whole family), I just want to reiterate how utterly fantastic they are, and that they get very little government funding, unlike some "nursing" homes. They are all massively oversubscribed yet manage to change people's lives. If you want to find your local hospice, either to support them or to refer someone, http://www.childhospice.org.uk/ is their umbrella organisation.