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.
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."
Source: BBC News, 23 September 2020