Archives for July 2010

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.

Statement from Claire Murdoch, Chief Executive, Central North West London Hospital Foundation Trust:

"I would like to extend our condolences to Mr. Rahel's family and assure them that we will do all we can to help them answer any remaining questions they might have in relation to his untimely and tragic death five years ago.

We are continuing to work with the Trust, which was responsible for the service at the time, to ensure that we, with their help, are able to address any unanswered issues to ensure that all possible lessons are learned and shared for the benefit of future patients and their families.

Yesterday's inquest verdict will obviously be of enormous help in informing our next steps and we will keep Mr Rahel's family closely informed of our progress."

Kirpal Rahel was a very bright man. He graduated from Kings College Cambridge University in 1984 with a degree in history and launched himself on a career as a teacher.

Marriage and starting a family started not long after. Unfortunately, so did the emergence of psychiatric illness.

By 1985 he was diagnosed with bipolar affective disorder and manic depression.

Throughout the next 20 years both Kirpal and his immediate close family increasingly struggled to manage his illness and contain the consequences of his increasingly unpredictable behaviour.

It is a set of circumstances which will be recognized by tens of thousands of families where relatives experience the emotional rollercoaster of mental health disturbances to normal family life.

One of the most enduring and difficult issues we face in the community is how to balance the needs of those with serious psychiatric issues and the safety of both themselves, family members and more broadly the public.

We no longer lock people up for good. We recognise that decisions around mental health care are consequently fraught with risk.

Families are often very reluctant to support having loved ones taken into mental health hospitals fearing the stigmatization that arises out of the contact with mental health professionals. And although the evidence is overwhelmingly positive, there are many examples where standards of care fall well below acceptable levels.

One of the most vexed issues is dealing with deaths of relatives who have been detained under section 3 of the Mental Health Act.

Being "sectioned" is one of the few ways the state can deprive an individual of their liberty. More often than not no crime will have been committed and therefore the state is effectively assuming full responsibility for the welfare of an innocent and vulnerable patient.

It's hardly surprising that some of these individuals are sometimes the most disturbed and difficult people to deal with. That does not absolve the agents of the state from needing to exercise consummate professionalism and due diligence in dealing with these vulnerable individuals.

Kirpal and his family's long battle to manage his illness and contain his progressive deterioration came to a head in July 2005.

His family had often struggled to get him to engage with mental health professionals and to follow their advice.

On several occasions from the mid-1990s his unpredictable and even aggressive behaviour overwhelmed his close family and he had to be detained at a mental health facility for his own welfare and that of others.

20th July 2005 was no different. Only on this occasion within three days he was dead.

A coroner's inquest has concluded that the quality of the decision-making managing his treatment at The Riverside Centre in Hillingdon was questionable. The fatal consequence of seemingly poor communication was the administration of a potent anti-psychotic drug which caused serious heart-failure.

At the heart of the two days evidence into the cause of Kirpal's death the court heard that a management plan of treatment had been discussed by staff prior to Kirpal's detention.

This included the injection of the potent anti-psychotic drug Accuphase (zuclopenthixol), but only in the event that Kirpal became unmanageable. Given his history the coroner accepted this was a reasonable expectation.

The morning after he was admitted the drug that led to his death was injected. However, in court it was unclear exactly if Kirpal had met the unmanageable criteria of the management plan and whether attempts had been made to ascertain that prior to giving the intra-muscular injection.

The consequence of that decision makes the explanation for what happened extremely important. Kirpal had been sectioned to The Riverside Centre for his own safety, but he had an adverse reaction to the drug and died. He was 42, and as the post-mortem found, an otherwise healthy man.

There was some concern expressed by the coroner that the care he received after the injection may have been marred by inadequate record keeping and documentation by the hospital.

The Central and North West London Trust that took over the running of that hospital some time after Kirpal's death, say those procedures and documentation have already been reviewed with a view to avoiding a similar tragedy.

But Kirpal's family is perhaps entitled to feel let down by the state.

It is difficult in the best of circumstances to get closure on such an unexpected death.They've had to wait a full five years for a satisfactory explanation into Kirpal's.

I understand the "Untoward Incident Report" conducted by Hillingdon PCT, its own internal investigation, failed to identify most of the significant findings heard in evidence at the inquest.

It cannot bear the hallmarks of timely or equitable justice when the State takes five full years to deliver a satisfactory explanation to a family, when a vulnerable relative has been deprived of their liberty and they then die in unexpected circumstances whilst in NHS care.

And to top it all nobody accepts responsibility for the errors that led to the death.

This time there were no fatalities and the fire appears to have acted in a predictable way although questions will still need to be answered as to why the blaze spread rapidly.

The building had been fire risk assessed in November 2009.

Some residents described using the experience of the tragedy at Lakanal House in Camberwell.

They ignored Fire Service advice to stay put in the event of a tower block fire until firefighters arrive and got out. A number, probably inadvisably, used the lifts.

Residents continue to show anxiety about their vulnerability in the event of fire. Another fire is also a reminder to the London Assembly that its current investigation (due to report in September) into the safety of high rises in the capital is both timely and its recommendations urgent.

The question of whether to stay put is particularly important when it comes to timber framed buildings. Anecdotally it is reported that this type of structure is gaining favour with developers and constructors and more are being built across London.

This has worried some architects like Sam Webb who is concerned that these structures are not as safe as they are being made out to be.

In this month's Royal Institute of British Architects' journal, Webb highlights the ambiguity over a test on a timber framed block at the British Research Establishment Centre at Cardington in 1999.

The reason this deserves our attention is that the report of this test, TF2000, is often cited as a reassurance that timber framed buildings comply with the 60 minute compartmentalisation rule for blocks of flats. Each individual living unit must guarantee 60 minutes fire resistance for fire-fighters to rescue residents.

The compartment test was deemed a success in TF2000, but Webb reports that the testers failed to point out that in the very early hours of the following day the Fire Brigade was called out to the test centre because a fire in a cavity in the test block had reignited the block.

It took several hours to get the fire under control. Webb says this makes the test unreliable evidence on which to assume these types of structure are safe.

The UK Timber Frame Association have told us that the fire at the BRE test site was not relevant to passing judgement on the robustness of these structures because the test was specifically about compartmentation.

A subsequent report by Chiltern Fire into the causes of the cavity fire at the test centre, made it clear that a high standard of workmanship was critical in timber framed blocks to prevent the spread of fire. There should be adequate cavity stops and an open recognition that fire crews were not always familiar with detecting these types of fire, because they are often difficult to spot.

Back in December I reported on a similar cavity fire in an inhabited block in Croydon in 2007 which had destroyed the entire building. Webb cites this as strong evidence of how blocks behave in real life, as opposed to test, conditions. He concludes that we are far from understanding the dangers inherent in timber framed construction.

One way of being better prepared, acknowledged by the London Assembly in its preliminary investigations, would be an inventory of all such timber framed buildings in the capital.

Curiously enough I was in the process of trying to find out this information under the Freedom of Information Act. At BBC London we'd approached all 32 London boroughs to find out what they know.

The results are quite disturbing. Twenty-seven London boroughs are clueless. No idea how many timber-framed blocks have been built or are being built in their boroughs. Three claim they have a fair idea and Kingston and Newham refused to answer the question.

If we follow Webb's analysis in the RIBA journal, what this means in reality is that no-one has really got a handle on how safe these blocks are, and more importantly public authorities in London don't know how or where they are being built.

In the event of a fire in these blocks it is highly doubtful that the Fire Brigade will be warned about what they are dealing with until they get on site.
As the Chiltern Fire report said, specialist equipment is needed to search for cavity fires in timber-framed buildings.

The Chairman of the London Fire Authority, Brian Coleman, says this is evidence enough for him not to want to live in such a block. He also maintains that regulations need to be introduced so that the fire authority and local authority planners are provided with this information once a building is completed.

The new Head of Housing in Southwark, elected since the Lakanal debacle, says the fire in a timber framed block under construction in Peckham in November has convinced him that the law is deficient. Ian Wingfield believes that local authorities must once again have a statutory responsibility to be able to inspect buildings under construction.

We should know what the London Assembly makes of all this by the beginning of September. They may only be able to recommend a change in the law, but they could certainly make it clear there needs to be an urgent change in the culture which seems to have relegated fire safety priorities in high rise London.

Where were you when this outrage happened? Few will forget the morning of 7th July 2005.

In my case I was high up on a Ugandan plateau looking up at Mount Elgon.

Surrounded by hundreds of villagers as cameraman David Perella was waiting to film a stand up for a piece for BBC London on fair trade coffee.

At 10.30 a text came through from his partner in London spelling out that several explosions had led to serious loss of life on the tube network.

We both felt sick and helpless; in the right place but now at the wrong time.

At the very moment that text came through, Thelma Stober was stuck underneath debris and bodies on the railway track at Aldgate, blown up by the 22 year old suicide bomber she was standing close to, Shehzad Tanweer.

Five years on Thelma has yet to venture back on to the Tube. The smells and shock of that moment five years ago endure.

In fact the memory of that day, Thelma told me in conversation recently, remains stronger than some of the things she did over the previous month.

I've observed Thelma's slow recovery from the trauma of that event. Despite her courage, conviction and determination she still struggles, as do many of the other approximately 700 victims directly affected that morning.

Many people are still so traumatised they find it impossible to talk to journalists about their experiences.

The day before all this happened, on the 6th of July 2005, things couldn't have been more different for Thelma and the team she was working with.

As legal adviser to the Olympic bid team, she was at the heart of the ecstatic celebrations over the success of bringing the Olympics to London in 2012.

When Jacques Rogge, President of the IOC said the words "London", the city went wild.

In Singapore the movers and shakers of the London bid celebrated, whilst those in London like Thelma made sure the final touches were made to the legal framework underpinning what was now the project to deliver 2012.

The following morning Thelma came into work slightly late.

As the Tube train she was on entered Liverpool Street station, her mobile phone showed a signal so she started to compose a text message to the office to say she would be in work shortly.

As the train pulled out of the station and Thelma pressed the send button she recalls an almighty white flash, and thinking maybe that's why there are signs up in certain places saying don't use your mobile phone.

Crazy as it might seem she thought she had caused the explosion with her mobile phone.

Thelma recalls coming to, lying on the track, a hand lay across her forehead.

It was then she realised she was in the midst of a disaster.

The hand belonged to one of the 52 victim who had perished.

As she puts it a kindly gentleman came and covered her with a jacket because all her clothes had been badly scorched and began talking to her, to keep her conscious.

Thelma wanted him to tell the office she would be late and expressed concern her son would be anxious if she was not at school to pick him up. Even in the midst of tragedy the everyday matters of life must carry on.

Thelma's recovery from her injuries, she lost the lower part of one leg, were initially hampered by difficulties in getting a suitable prosthetic limb.

Unbelievably it was expected that she would be satisfied with a white coloured limb. Thelma is from Sierra Leone and wanted, as she puts it, her two legs to match.

She found it degrading to have to constantly prove that she was an amputee. A psychological adjustment she believes needs better management by medical practitioners.

The recovery process has been a constant battle she says for her and other survivors.

Because they were victims of a terror outrage many could not rely on private insurance policies to fund the lengthy recovery periods involved.

Thelma says she was in denial that things were bleak or that life would have to change for a long time.

The bottom line: She had an urge not to give the terrorists who blew up the trains the pleasure of seeing victims give up.

It certainly didn't help that there was such resistance to a full public inquiry.

Many of the victims still want an answer to the key question of who knew what, how much and when.

Could the catastrophe have been avoided if intelligence agencies had joined up the dots and conveyed that picture to the police?

Thelma is no longer angry but in a curious way would like to sit down with those who changed her life so dramatically to ask if this is what they intended and if there could be another way of resolving what ever motivated them to act in the first place.

We conclude our conversation with the positive tone with which we started.

From personal tragedy a new philosophy emerged that having been given a second chance at living her life; she is now focussed on doing good or at least as little harm to others as possible.

London life has recovered, I'm not sure we are any longer as complacent as we had become in 2005, the memories of the IRA's reign of terror in the 1970s and 80s having largely faded.

Personally, barely a day goes by where I don't have a little voice in my head saying I hope my kids come back safely every time they venture into central London.

Thelma says one day she is determined to get back on the tube.

She misses the hustle and bustle, but unlike those of us less directly affected, Thelma cannot yet control her fear.

To never do so again and not take part in one of the necessary rituals of London life would, in her terms, be a failure.

I hope I'm with her when she takes those steps. Thelma loathes failure.

He desperately wanted to reach them but was prevented from doing so by firefighters for his own safety.

He still can't figure out why his young family were not rescued. It's still unclear if firefighters told his wife to stay put with her child. They died alongside the Francesquini family sheltered in their flat, reportedly sent back there by firefighters for their safety.

In conversation Mbet's tortured responses show he is a young man who is struggling with his emotions, battling to cope with his loss. The past year has seen Mbet continue his studies to complete an MBA at the University of Wales at Cardiff.

But for him life will not move on until an inquest explains what happened. He feels he's stuck in a dream.

That is not going to start until the police have concluded their investigation. There is no sign of that yet. Louise Christian, solicitor to the families, says the delay is incomprehensible.

Christian points out that after the Kings Cross fire, investigation, inquest and new legislation were all achieved within 12 months. She identifies a lack of political will to drive this case forward.

Meanwhile on the Sceaux Gardens estate itself, there is an eerie silence surrounding the empty Lakanal block where once 98 families had their homes. John McGrath, who has been the longstanding Chairman of the tenants' and resident's association, says it's like living next to a mausoleum.

A fear still grips the families in the neighbouring sister block, Marie Curie House, says McGrath despite millions of pounds of fire safety improvements demanded by the London Fire Brigade.

McGrath adds until people see the facts in black and white they believe nothing they are being told by the authorities about the cause of the blaze and why it spread.

One big thing has changed since last year. The election threw out the parties blamed for the mess and a new party was elected promising to sort it out. The new Deputy Council Leader, Ian Wingfield, was cheerleader supreme in bashing the last administration for its failings.

He can't say he doesn't know what he's let himself in for, residents are watching closely.

Now on the inside looking out he says that Southwark have done all they can, for their part, to furnish the police with the information they need to finish their investigation.

To date the legal bill for doing that has amounted to £1.2 million. But Cllr Wingfield adds that the fact that both Southwark Council and the London Fire Brigade are subject to this investigation and therefore potentially prosecution inevitably slows the process down.

It does seem a rather inhumane consequence of a process, to leave families of those who died suffering this emotional turmoil for so long.

Louise Christian, who also represents families of the Potters Bar rail crash victims, believes the legal system should be doing a lot better and has written to the Coroner to try to quicken the pace of the police investigation.

Mbet Udoaka says he's not been allowed back into the flat where he last saw his family and his belongings were removed to a storage facility without his consent.

His family home was not touched by the fire so he cannot understand why. He starts an answer to one of my questions "if this had happened in a developing country......" but trails off without being able to finish his sentence. Probably because he can't bear to think of the answer. Indeed.

Many believe he is justifiably bewildered.