The parents of a teenager who died in the care of Southern Health NHS Foundation Trust say they are still searching for answers three years on from his death.

Edward Hartley, who lived in Wickham, died aged 18 in May 2014 following complications from an epileptic seizure.

Edward had profound learning disabilities stemming from a genetic condition called Dravet Syndrome – a rare and catastrophic form of intractable epilepsy.

His parents, Ian and Jane, attended yesterday's meetings and say they are no closer to finding out the truth about their son's death.

Ian, a retired chartered chemical engineer, said: "For the first 17 years of Edward's life, we had no support at all in his care.

"As he got physically bigger, the situation became more difficult, so we managed to get support for him which eventually included night time support to monitor him for seizures and help him to recover from seizures, should he have one.

"He would have a seizure almost every night, and was known to have 70 epileptic incidents in one night at the peak of his condition."

Edward was found dead in his bed by a Southern Health carer in the morning on May 28, 2014.

A post-mortem carried out revealed the teenager had died from cardiorespiratory failure as a result of an epileptic seizure.

Mr Hartley said: "What we want to happen is for the full facts surrounding Edward's care and his treatment leading up to his death to be acknowledged and accepted by the trust.

"We want that then to drive changes to ensure no one else goes through the same situation.

"We have had an investigation carried out by Southern Health to try and achieve those true facts and it was abysmal - inaccurate, incomplete and distorting the truth."

Mr Hartley said one of their main concerns was the trust's outsourcing of learning disability services to other providers outside the framework of the NHS.

He added: "We are now concerned that the ability to achieve accountability for what happened, and to use that to drive changes within the service, is being diminished because it is just being dissipated over a number of other services."

Edward attended Osborne school in Winchester and was brother to Thomas, 26 and James, 24.

Mrs Hartley said: "The biggest thing people commented on was his beautiful smile.

"Edward brought out the best in everyone and he thoroughly enjoyed life.

"His particular interests were in fast cars, noisy engines, and combine harvesters. He is immensely missed by his brothers."

Julie Dawes, Interim Chief Executive of Southern Health NHS Foundation Trust said; “Edward sadly died whilst receiving care from the Trust in May 2014. Following his death the Trust completed an internal investigation. In addition, West Hampshire CCG subsequently commissioned an external review of the care received by Edward from a number of organisations, and this investigation is still ongoing. I remain in regular dialogue with Edward’s family to try and address their concerns.”