Reputations at stake?

Arvind Jain's bedroom is as pristine as the day he left it to end his young life in the Royal Free Hospital last July. I have the impression it is now a kind of shrine to the youngest member of the family who acted as an inspiration to those around him.

Shushma and Nitin Jain are respectively, Arvind's older sister and brother. Both are in their late 20s but have clearly not lost the deep admiration they have for the young boy they saw mature with grace and forbearance.

Despite his serious condition, Duchenne Muscular Dystrophy (DMD), they recall how positively he approached life even whilst it slipped away from him over eight months in 2009. The condition affects 70,000 people across the UK.

As a consequence of his condition Arvind had had difficulty in swallowing and feeding by the end of 2008.

The temporary medical solution was to insert a tube through the nose (nasogastric tube) to assist with his key nutritional needs.

He experienced a number of other associated complications too, although none of these were seen to be life-threatening for much of 2009.

The more permanent solution recommended and requested by his Consultant Paediatric Neurologist at Great Ormond Street Hospital (GOSH) in January 2009 was a gastrostomy insertion.

This would allow Arvind to be fed via tubes to the stomach. The target for this request was another Department at the world leading hospital, led by leading Consultant Paediatric Surgeon, Professo Pierro.

Despite repeated requests to make progress on getting this relatively straightforward operation done, by May, the Jain family were no closer to getting an admission for 13 year old Arvind. His health was by now seriously deteriorating.

On May 22nd Arvind himself was recorded by his consultant as being "worried about dying".

The Jain's were reassured by one consultant that it was "not imminent in his case and once the feeding and bladder difficulties have been symptomatically helped by gastrostomy/fundoplication.... I anticipate a period of stability aiming to get comfort and good quality of life with the help of medications".

Such reassurance and strong clinical advocacy from within GOSH itself failed to get the relevant institutional wheels to move quickly enough.

Arvind died, essentially of malnutrition on August 9th 2009. By the time his veins began to fail in mid-July it was unlikely a late surgical intervention could have saved him.

One can only imagine what was going through a 13-year-old mind when he must have realised he could not survive and yet still had weeks to live. He knew full well an operation that could have prolonged his life had remained unavailable to him for seven months.

I put a very simple question to GOSH. Why did Arvind not get a relatively straightforward operation which could well have prolonged his life according to at least one consultant as late as May 22nd?

They tell me patient confidentiality doesn't allow them to discuss such matters with the press. Of course the reason the press now know is that they adopted a not dissimilar position with the Jain family.

The family have been asking this question, as did Arvind repeatedly before he died, of the hospital authorities. A year on the explanation so far rests on the results of an internal investigation carried out in October 2009.

The hospital has apologised for a series of administrative oversights and delays.

The consequence of these errors was the premature and possibly unnecessary death of a teenage sufferer of DMD.

The Muscular Dystrophy campaign recognises that the Jain's family plight is not uncommon across the country.

They have previously drawn up a set of care standards that they are urging hospitals across the UK to adopt.

They claim that Arvind's death should have been prevented and are urging hospitals to "implement the Standards of Care which would help to prolong lives and prevent avoidable deaths for patients with Duchenne muscular dystrophy."

The question is when do the actions of medical staff collectively add up to negligence on the part of the hospital authorities?

Why is GOSH so unprepared to admit that on the evidence available they got this young boys treatment path wrong.

At what point does the reputation of the institution get in the way of accountability of its medical officers, when internal communication failures lead to a catastrophic failure to deliver life-prolonging treatment.

A great institution cannot surely be greater than the duty it holds for the people it is bound to treat. When they get something wrong, reputation cannot surely be sacrosanct.

The hospital have now indicated they are prepared to have their first face to face meeting with the family since this tragedy came to pass nearly a year ago.