[Update: [2014] How Robbie's tragic death could stop doctors telling lies to cover up their mistakes]

Daily Mail

Why were lying GPs allowed to cover up our son's death?

By Jane Feinmann
Last updated at 8:46 AM on 19th May 2009

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An astonishing 19-year fight for the truth - and how it exposes a horrifying hole in our legal system.

Determined: Will Powell with wife Diane. Will has spent the past two decades trying to find out the truth about his son Robbie's sudden death

By rights, Robbie Powell should have been celebrating his 30th birthday this year - still the apple of his daddy’s eye and almost certainly, like his two elder brothers, settled and raising a young family. But 19 years ago he died suddenly, apparently after developing a stomach complaint.

Many parents would have shut themselves away to grieve, but not Robbie’s father, Will. He vowed that he would discover what had gone so badly wrong - and has spent the past two decades trying to find out the truth. The effort has all but driven him mad, he says, as he’s battled against the cynicism and sheer indifference of officialdom.

He’s been vilified as a fantasist and his family life has been destroyed - yet he has refused to give up. ‘The doctors involved believed they could wear me down - that I would give up, as most people eventually give up when making complaints about their doctors,’ he says. ‘But I didn’t.’

What he found is truly shocking. Not only did the GPs forge his son’s medical notes, but in their attempts to cover up what had happened, they also lied to an inquiry set up into Robbie’s death.

Mr Powell’s investigation also unravelled a truly horrifying fact. For the story of the boy who never grew up has exposed British doctors’ best-kept secret - that they are under no legal obligation to tell the truth to a patient’s family about the circumstances surrounding a death.

Indeed, it is not even clear whether doctors can be prosecuted for falsifying patients’ records.

This lack of legal obligation to tell the truth is unique in the developed world, and it may well have continued to go unnoticed were it not for Will Powell.

It would be difficult to overstate the terrier-like persistence with which the 55-year-old former car mechanic has painstakingly unpicked the doctors’ version of the events surrounding the death of his darling boy.

At his semi-detached house in the small Welsh town of Ystradgynlais, near Swansea, he sits surrounded by a pile of meticulously ordered files and copies of the 2,000 and more letters he has written to the authorities.

He has turned for help to every relevant state organisation - beginning with a ten-year battle to get the coroner to hold an inquest into his son’s death, and involving local professional disciplinary bodies, civil courts, the European Court of Human Rights, the Welsh Office, the police and the General Medical Council (GMC).

What makes this story so alarming is that it exposes just how impotent families are when faced with doctors determined to cover up mistakes.

Twenty years ago, the Powells were a happy, carefree family. Will, a Glaswegian, had moved to Ystradgynlais as a young man and married a Welsh girl, Diane. He became a keen angler and member of the local darts team, raising his three boys - Robbie, Justin, now 33, and Ian, 31 - in ‘an ordinary, working-class home where we worked hard to keep a roof over the boys’ heads’.

Robbie was a popular, happy, outgoing little boy - ‘Someone who made you feel loved and special,’ recalls his father.

None of the children had ever had a serious illness until December 1989, when Robbie suffered a bout of stomach pain and vomiting that was so bad he was admitted to Morriston Hospital, Swansea.

It later emerged that at least one hospital doctor suspected what proved to be true, that Robbie had Addison’s disease - a rare, but highly treatable disease of the adrenal glands - but he failed to tell Will and Diane, or to conduct the test that would have confirmed it. The hospital has since acknowledged this doctor was negligent.

However, it is what then happened in the weeks immediately before and after Robbie’s death that is most disturbing. Over three weeks, as the ten-year-old suffered vomiting, weight loss and stomach pains, he was seen seven times by five GPs from the local surgery.

Needless death: Robbie Powell (pictured aged 10) died suddenly 19 years ago after apparently developing a stomach complaint

It has since been established that only one GP considered referring the boy back to hospital, but never did so. The others did not read the boy’s notes, perform a blood test or even take his blood pressure.

One tried to test his blood sugar, but found his kit was out of date. None recognised that they were dealing with a very sick boy in need of urgent transfer to hospital - instead telling his distraught parents there was nothing wrong with him.

In the final two days of his life, two of the five GPs saw Robbie, but failed to refer him to hospital - even though, at the time, he could not walk and was severely dehydrated. The afternoon of his death,15 days after he’d first fallen ill, a third GP was called to his house after he had been carried to the bathroom by his mother, where he collapsed, his lips blue and his pupils dilated.

‘We didn’t know it at the time, but he was already dying,’ says Will. Yet the GP told the family that a throat infection diagnosed the day before had spread to his chest, and refused to refer him to hospital.

When the parents called the surgery again an hour later, the GP returned, but refused again to send Robbie to hospital, had an argument with Will, relented, scribbled a referral note and walked angrily out of the house - leaving the parents to drive their son to hospital.

‘I remember telling Robbie over and over again to stay awake because I didn’t want the doctors to think he was just sleepy,’ says Will.

In fact, his son was lapsing in and out of consciousness.

When the family arrived at the hospital, staff immediately called the crash team. As they later told the family, Robbie was ‘desperately ill and close to death’ and ‘looked like someone from a concentration camp’ because he was so dehydrated.

He died as they tried to revive him.

Will grasped quite quickly that his son’s death could have been avoided. ‘Addison’s disease prevents the adrenal glands from pumping vital hormones around the body, reducing blood pressure and eventually causing a heart attack.

‘It’s like a car running out of petrol - and I knew well enough from my knowledge of engines that the damage could have been halted.’

Indeed, hydrocortisone and intravenous fluids can bring an emergency Addison’s disease patient back to normal health in less than an hour.

‘I extended my compassion to the GPs who had let my son die. I felt they must be suffering, too,’ says Will.

‘But I think they misunderstood. I believe they saw me as someone with no education and thought I posed no risk to their reputations.’

When he asked the senior partner to carry out an investigation into what had gone wrong, the doctor refused point blank.

Shortly after Robbie’s death, Will had asked to see his son’s medical records - and, realising their significance, had them witnessed by a local vicar.

Seven months later, when he was formally served with the paperwork for the first inquiry into Robbie’s death by the West Glamorgan family health service authority, he was alarmed to discover the notes had been changed, and that at least one letter had disappeared.

Several years later, forensic tests carried out during an investigation by the Crown Prosecution Service, confirmed that some of the notes had been written at a much later date than the GPs claimed.

Family ties: Left to right, Justin (14), Will Powell, Robbie (10), Diane and Ian (12). Will's relationships with sons Justin and Ian have suffered irreparable damage

What is more, the magistrate who headed the West Glamorgan inquiry has said on record to the police that the GPs lied when giving evidence to the inquiry. Nonetheless, this inquiry concluded the doctors had acted correctly - apart from issuing a verbal warning to Robbie’s GP for failing to call an ambulance.

After this, Will recalls months of near-suicidal despair. ‘Diane carried on with the housework and looking after the boys, thank goodness. I took to the bedroom for weeks on end.

‘I did nearly lose my mind back then. I was making allegations of dishonesty about the local GPs. That’s a difficult position for anyone to be in - and especially someone like me who left school with no qualifications and can’t even do joined-up writing.’

The GPs put up a notice in the surgery that claimed that Will’s allegations were ‘distortions and fantasy’ - resulting in one of Britain’s longest-running defamation trials, concluded in Will’s favour just four years ago. Over the next ten years, he contacted every official body he could think of to find out what had happened to his son, and then to find out why nobody would investigate the case.

Perhaps the most telling aspect of his epic campaign is that all this time, Will was being viewed as a troublemaker by the official bodies from which he sought help.

Under the Data Protection Act, he has found out that the Welsh Ombudsman called him ‘vindictive’, ‘an alley cat’, ‘a caveman’ and ‘bully’.

Hardly surprising, then, that Will and Diane suffered emotionally. ‘I’ve been suicidal on more than one occasion, and our family life all but disappeared,’ he says.

‘My personality changed. I barely went out, and I haven’t worked since Robbie died. We’ve lived on benefits for years and have had to remortgage the house.

‘I was lucky to have a wonderful wife, who loved Robbie and loved me, and we’ve managed to stick together. But my relationship with my other two sons has suffered irreparable harm over two decades.

Though we can talk now, that damage is permanent.’

What looked like a breakthrough came ten years after Robbie died, in 2000, when an officer from West Midlands police, Detective Chief Inspector Bob Poole, brought in to review the case after intense lobbying by Will, uncovered evidence of gross negligence, forgery and conspiracy to pervert the course of justice by the GPs. His recommended charges for the GPs to answer ran to several pages.

‘It was as though a great weight had been lifted,’ says Will. ‘At long last, someone in authority was seeing these events from the same viewpoint - seeing the truth instead of accepting a mishmash of lies.’

The Crown Prosecution Service refused to press criminal charges on the grounds that the GPs had previously been assured they would not be prosecuted. The doctors also gained support from a High Court ruling that found they had no case to answer in civil law.

When Will took this to the Court of Appeal in 1997, Lord Justice Stuart-Smith made the landmark ruling that doctors had no legal obligation to truthfully explain the circumstances of a patient’s death to bereaved relatives.

‘GPs can put a gloss on the cause of death without fear of litigation,’ said a GP leader, Dr Brian Goss, at the time. In some cases, honesty can be rather hurtful. You don’t necessarily want to point out to a relative that the patient would be alive if they hadn’t smoked so much.’

Will appealed to the European Court of Human Rights, but it also ruled that in Britain ‘doctors do not have to tell the truth or refrain from deliberately falsifying medical records’ - implying that they can falsify records without worry. Such a judgment seems incredible - yet the fact is, unlike doctors throughout Europe, there is no duty of candour for British doctors.

‘This is something few people realise - and yet far too many have experienced it,’ says Peter Walsh of the pressure group Action Against Medical Accidents.

Vow: Will Powell at his home surrounded by files and about 2,000 letters to authorities concerning his son Robbie's death

In February, Mr Walsh’s charity was granted permission for a judicial review that could finally force the GMC to investigate Will’s allegations. For the past six years, the GMC has refused to investigate a formal complaint about the Ystradgynlais GPs on the grounds that too much time has elapsed since Robbie’s death.

Of course, the vast majority of doctors want to be open and honest, and many senior leaders in the NHS, including the Chief Medical Officer, have called for the medical profession to be obliged by law to tell the truth about any mistakes they make to patients or their relatives,’ says Walsh.

Until as recently as two weeks ago, the NHS Litigation Authority was still warning doctors that ‘care needs to be taken in the dissemination of explanations [of what went wrong] so as to avoid future litigation risks’. This advice has only just been withdrawn from the authority’s website.

Former King’s College surgeon Tony Giddings, chair of the Alliance For The Safety Of Patients, says the culture of denial is a hangover from ‘the dark ages of medicine when so little could be done and the habit of protecting professionals and their position arose because we didn’t know any better. We do now.

'All the evidence from studies around the world has shown the importance of telling the truth if patients are to have a system they can trust, and doctors are to have the confidence of the public.’

Now, a campaign known as Robbie’s Law has just been set up by Action Against Medical Accidents to persuade the Government to introduce legislation that requires doctors to inform patients, or their next of kin, of errors or incidents in their healthcare that have caused, or may cause, harm.

For some local people, the fight has gone on too long. When the High Court ruling was reported on the local newspaper website last month, some villagers expressed the view that Will Powell should get on with his life and stop ‘persecuting’ the doctors.

‘These are people who would complain if the bus was five minutes late,’ says Will. ‘If the doctors had been honest about what had happened, we could all have got on with our lives, however painful Robbie’s death. How I wish that could have happened.’

For Will and Diane, at long last there seems a chance of happiness.

‘We’ve got three lovely grandchildren, which is a new start, and at least we’re talking as a family.’

But Will says he will never have a normal life again. ‘If they’d wanted this to be forgotten and put in the past, the GPs could have told the truth right at the beginning,’ he says. ‘Perhaps it would have helped me to move on, too.

‘But I’m stuck here, feeling Robbie’s death and the injustice of what they did as keenly as ever.’

Dr Keith Hughes, senior partner at the Ystradgynlais group practice, said the GPs had been advised not to make any comment. ‘We cannot make a statement with all these legal proceedings going on,’ he said.