IPSWICH: Parents of a young man who died from epilepsy eight years ago are today still struggling to cope because they feel justice has not been done.

Maryvonne and Clifford Evans’s beloved son Etienne Calow died in his sleep from an epileptic fit (Sudden Death in Epilepsy/SUDEP) on March 29, 2002 at the age of 23– just three weeks after his final appointment at Ipswich Hospital as an outpatient.

After the appointment, he went back to his university in Buckinghamshire and apparently told friends that he was cured, no longer had to take medication for his epilepsy and could drive.

However when hospital personnel were questioned about this after his death, they denied it and said he was instructed to continue taking his medication. After doing some research, Mr and Mrs Evans discovered that when someone suddenly stops taking their epilepsy medication, they are more prone to fits and SUDEP.

Although Etienne’s parents considered taking legal action at the time, they now feel that if the blame culture can be stripped away, this can lead to more openness.

They said: “We currently still have great difficulty coming to terms with Etienne’s death and what they call ‘closure’ seems far away even after all this time, mostly because, in our opinion, justice has not been done for Etienne. Nevertheless, and in spite of such pain, we have concluded that in our opinion it would be much better for the NHS and surviving relatives in cases of death like this, that it were made illegal to sue the NHS or medical staff concerned, so the blame culture we are all trapped in would not prevent absolute honesty from the medical personnel involved, without the fear of litigation.

“The money saved by the NHS would be a considerable amount, which could surely be better spent.”

Etienne, who was in his final year at university studying multimedia and technology, was 18 when he was diagnosed with epilepsy. His parents were distraught after his death as they did not realise it was a potentially life-threatening condition.

Mr Evans, 62, said of his stepson: “I could not have had a better son. His smile was the most contagious and powerful thing about him. It is a continuing effort to move on.”

Mrs Evans, 57, added: “We want to know what happened. Families should not have to go through the same agony.” Following Etienne’s death, his parents had a meeting with hospital personnel but they said they had no idea why he died.

Last year, unable to put it behind them, they requested a further meeting with the hospital but failed to make any progress.

The Coroner’s verdict was that he died from natural causes.

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