We have recently been bereaved of our daughter/granddaughter, who died at the age of 13 in her own home from an undiagnosed neurodegenerative disorder. The last two years of her life were extremely distressing, and we feel strongly that the advice we were given by paediatricians and other professionals involved in her care, did not consider the long term consequences of their recommendations.

Briefly to explain the situation, Frances was initially thought to have cerebral palsy, but she started to show deterioration from the age of 9 or 10. She was seen by a paediatric neurologist who confirmed that she had a degenerative condition, but was unable to give this condition a name. Her feeding became quite difficult, but her family and known carers were able to give her sufficient food and drink. Unfortunately carers who did not know her so well would be unable to give her sufficient food, and some professionals felt that her deterioration was due to poor nutrition. At this stage, the professionals involved in her care were very insistent that she should be artificially fed. As her close family and predominant carers we were reluctant to agree to this, and felt that we wanted “nature to take its course”. Under no circumstances did we want our daughter/granddaughter to be kept alive artificially without any quality of life. We felt pressurised and …