THE mother of an epileptic found dead in his bed has reacted angrily to what she says is an "insulting" response from the Care Quality Commission to a coroner's recommendation.
James Stephens, who had learning disabilities, was found dead in bed on April 26, 2010 by his carer at his Downend flat. He was 31 years old.
At an inquest into his death on March 18, 2011 Maria Voisin, HM Coroner for Avon, found the cause of death was Sudden Unexplained Death in Epilepsy (SUDEP).
As a result of the inquest, the coroner wrote to the Care Quality Commission (CQC), which is the body responsible for regulation of health and adult social care.
She stated action should be taken to reduce the risk of similar deaths and awareness of the guidelines should be circulated to all those caring for people with epilepsy.
But James's mother Margaret, who is desperate to raise awareness about SUDEP, said the CQC's response took almost a year and was "insulting to James and to the coroner".
She claims the letter to the coroner simply outlined the regulations applying to registered care providers and stated providers were expected to take account of all relevant guidance, including guidance from the National Institute for Health and Clinical Excellence (NICE).
She said the CQC stated it would not take any action in response to the coroner's letter.
"The reply is dismissive and complacent," she said.
"What is the point of having guidance if it is widely ignored?
"The Care Quality Commission has no interest in care, or quality. Their response is insulting to James and to the coroner."
His family say they do not intend to let the matter rest.
James's sister, Katie, added: "We will continue our fight to get justice for James. We are contacting our MP about the CQC's refusal to take action. We will also continue our support of the charity Epilepsy Bereaved in its campaign to increase public awareness of SUDEP with the ultimate aim of reducing the risk of similar deaths."
A spokesman for CQC said: "The CQC would like to express sympathy to the Stephens family for their loss, and apologise for the delay in responding to the letter from the coroner in this case.
"Cintre Reachout, as with all providers registered with CQC, has a responsibility to meet the essential standards of quality and safety.
"CQC makes unannounced inspections to check that providers meet these standards and expects providers to plan care in a way that meets the individual needs of the person receiving that care.
"Care planning should take into account guidance issued by professional and expert bodies in terms of good practice - guidance relating to the care of people with epilepsy would clearly fall into this category.
"It is the responsibility of the provider to ensure that they take of account of guidance and best practice on specific medical conditions when planning a care and support package. "However, where CQC finds that care plans do not meet the needs of the person receiving care, it can and does take action to make sure that people are safe and well cared for."
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