Health News - Arvind Jain - GOSH say sorry to family for teen's death

Published: 1 July, 2010
by TOM FOOT

A FAMILY is demanding answers after a boy died following a six-month wait for potentially life-saving surgery at Great Ormond Street Hospital.

Arvind Jain, 13, who suffered from Duchenne Muscular Dystrophy (DMD), a rare and debilitating muscle-wasting condition, died in the Royal Free Hospital in August  last year.

He was moved to the Hampstead hospital because of a shortage of bed space at GOSH. Royal Free experts then repeatedly wrote to consultants at the children’s hospital requesting surgery after he began rejecting food given through a tube.

But a communication breakdown and bureaucratic delays denied Arvind the chance to prolong his life, according to his family, who live in Cricklewood.

His sister Shusma, 28, said: “We sat and watched for two months as my gorgeous and brave brother deteriorated as he could not be fed or have medications.

“He became skin and bones and died due to malnutrition.”

In an official complaint to the hospital, she wrote: “When we were told he was dying, it was because the ­doctors could not feed him.”

GOSH argue that the teenager’s condition was complex and that feeding problems were not the only cause of his death.

Arvind was admitted to the Royal Free in January 2009 with feeding problems that became more complex after he began vomiting and developed pneumonia.

Consultants recommended that GOSH experts should operate on an “as soon as basis” that month – but there was no response to the family from the children’s hospital.

DMD specialist Dr Adnan Manzur warned on May 23 that Arvind “definitely requires a surgical procedure to aid feeding”, and that gastronomy “would be effective in treating Arvind’s specific problem with feeding.”

Arvind’s medical file, seen by the New Journal, shows a date for a pre-op assessment was booked at GOSH.

But neither the care team at the Royal Free nor the family were informed and the opportunity to speed up booking a date for surgery was missed.

Arvind’s family, having been reassured that “death was not imminent” and that experts “anticipated a period of stability”, booked a Disney World treat for him. It was a trip they would never take.

On June 26, Royal Free doctors wrote again to GOSH, this time outlining concerns that Arvind’s feeding had “progressively worsened”, and on July 3 another Royal Free doctor wrote to GOSH demanding a meeting.

Arvind’s brother, Nitin, 29, a successful senior boss of an opticians firm based in Tottenham Court Road, said: “The illness, it never held him back.

Someone has to take responsibility – no one has raised their hand.”

In a response to the family, GOSH said: “The general surgery team fully accept that there were several letters which should have been responded to.

The team would like to offer its sincere apologies for this.

The team would like to confirm that appropriate action was taken when these letters were received.

The team entirely agrees that Dr Manzur should have been updated on the actions that were being taken, and also that the family should have been aware of what was happening at every stage.

“The surgical team has advised the gastronomy would have been effective in treating Arvind’s specific problem with feeding.

However, Arvind sadly suffered with many other problems.

The gastronomy was not the single factor that would have prolonged his life.

“This review has clearly identified some key areas where communication and processes were not delivered at required levels.

The general surgery team would like to extend their sincere apologies to the family for the delays and problems they suffered during this difficult time.”