Great Ormond Street criticised over Arvind Jain's death
Delays at the Great Ormond Street Hospital led to a boy dying an agonising death, a health watchdog has found.
Arvind Jain, 13, who had Duchenne Muscular Dystrophy, died in August 2009 after waiting months for an operation.
The ombudsman's report found he had "suffered considerable distress" and criticised referral procedures as "chaotic and substandard".
The Great Ormond Street Hospital said there were "failings in clinical care".
Arvind's sister Shushma said: "To read that he was suffering all the time, that was disgusting.
"He had been asking us repeatedly if he would get the operation and we would be constantly reassuring him that he would not die."
The degenerative disease Arvind, who lived in Cricklewood, north London, suffered from was not immediately life threatening but in January 2009 his condition had become acute enough for him to struggle with swallowing and feeding.
He had a temporary medical solution where a tube was inserted through his nose to help him get the required nutrition.
He also experienced a number of other medical complications although none of these was considered life-threatening.
Referral process 'chaotic'
The permanent solution recommended by his consultant paediatric neurologist was a gastrostomy insertion which would allow Arvind to feed through his stomach.
The Great Ormond Street Hospital Trust (GOSH) excels in such procedures, however, a series of communication errors meant despite repeated and urgent requests from his neurological consultant, proper investigations were not carried out into Arvind's suitability for the operation.
After five months of delays he and his family were reassured that as soon as he got the operation he would be much more comfortable.
Another hospital also offered to carry out the operation in the event that the delays continued.
But the surgical team that was due to carry out the operation never managed to assess Arvind.
His condition deteriorated to the point where he was not well enough to be operated on and Arvind died on 9 August 2009.
The Parliamentary and Health Service Ombudsman's report said he "suffered considerable distress and discomfort".
It also describes a series of basic shortcomings in Arvind's care.
The report said: "The standard of care provided for Arvind fell so far below the applicable standards as to amount to service failure."
The ombudsman added: "I cannot say that the trust provided honest evidence-based explanations or listened to the family to understand their complaint and the outcome they were seeking."
The family complained shortly after Arvind's death but it took the hospital a year to arrange a meeting between the senior management, the responsible senior clinician and the family.
The medical director of GOSH, Professor Martin Elliot, said the hospital has "learned from this tragedy".
'We let him down'
"We apologise unreservedly to Arvind's family. We let him down in failings of clinical care and we let his family down in the way we handled their complaint."
Prof Elliot said the hospital has reformed its complaints procedure.
The family insist they have not yet given up on holding individuals accountable for the failures that led to the teenager's death.
Chief executive of Muscular Dystrophy Campaign, Robert Meadowcroft, said: "Hospital staff must listen carefully to the parents of boys with this condition, as they often have a wealth of knowledge about their son's condition."