Dena Hale was said to have suffered an epileptic fit in her sleep in March last year. Her mum Debbie found her 'cold and unresponsive' in bed at her home near Normanton, West Yorkshire, and despite frantic efforts by her dad Stephen and paramedics, she was later pronounced dead at hospital.
Her family say they now want answers as to why she died, after the inquest in Wakefield heard that there was a 'missed opportunity' to diagnose Dena's epilepsy.
Debbie, 37, said after the hearing that the family had 'been through hell' since Dena died, and that they were still going through it.
"We tried so many times to get answers – but no-one would listen to us," she said.
Dena had seen her GP at the Newland Surgery after experiencing slurred speech and pins and needles in August 2009. She was examined by a locum who wrote in her notes that he believed her to be dehydrated. He added 'refer to specialist' but the referral was never made,
The inquest was told that Dena's usual GP, Dr Ram Prasad Gupta, was unable to understand an abbreviation which the locum doctor had put on Dena's notes. Another doctor eventually translated it - CSOS - as 'See in an emergency'.
Speaking through their legal representative Oliver Longstaff, Dena's mum and dad questioned why the locum's notes had not been followed up.
Mr Longstaff asked Dr Gupta: "From his notes, do you believe the locum should do the referral or you?"
Dr Gupta replied: "He should."
Mr Longstaff went on to ask "So if there was a suggestion that there should be a referral that was never followed up? And if he doesn't then the suggestion just gets lost in the system?"
To which Dr Gupta said 'yes'.
The coroner, David Hinchliff, said Dena had been seen by a specialist at Pinderfields Hospital in January 2010 when her parents said she had suffered a fit.
Mr Hinchliff recorded a verdict of death by natural causes caused by sudden and unexplained death in epilepsy. However he said he felt it would have been 'appropriate for her to be referred to the appropriate clinicians with expertise both in paediatrics and epilepsy, for her to have been reviewed and followed up'.
Mr Hinchliff also said he was 'troubled' by the records of the GP, in particular 'when the locum doctor made reference to a referral that did not happen'.
"I would regard that as a missed opportunity," he said.
The Yorkshire Evening Post reports that the family's legal team, Switalskis Solicitors, said they will be pursuing a claim for medical negligence.