[See:  Why were lying GPs allowed to cover up our son's death?]
How Robbie's tragic death could stop doctors telling lies to cover up their mistakes
By JANE FEINMANN FOR THE DAILY MAIL
PUBLISHED: 01:26, 1 April 2014 | UPDATED: 03:53, 1 April 2014
As he opened the thick envelope, Will Powell braced himself to read the doctors' notes that covered the days leading up to the death of his ten-year-old son Robbie.
But the documents Will received that November day in 1990 were notably different from the medical records he'd seen seven months before.
He searched in vain for a key letter from the hospital that had warned his son's GPs to keep an eye out for symptoms that would confirm he needed urgent tests for Addison's disease - a very rare disorder affecting the adrenal glands, which prevents vital hormones being pumped around the body.
'It's like a car running out of petrol,' says Will, a former mechanic.
With daily medication to replace the missing hormones, patients are able to live a normal, healthy life - but Robbie never had that chance.
The youngest of three sons, Robbie first became ill in December 1989 suffering from stomach pain and vomiting severe enough for him to be admitted to hospital in Swansea.
The hospital sent a letter to Robbie's GP practice alerting them that they suspected Addison's disease, though Will and his wife were not informed.
The hospital arranged for him to be given a test for Addison's the following January, though this was cancelled as Robbie appeared to have fully recovered. However, the hospital wrote again to Robbie's GPs advising them to refer him immediately to hospital if his symptoms returned.
Yet when Robbie became ill again three months later, only one of the five doctors who saw him in those final days bothered to read his medical notes, including this crucial instruction. That one GP planned to refer him back to hospital yet never did.
None of the others took his blood pressure, which would have sounded immediate alarm bells. Another considered testing his blood sugar levels - but didn't bother when he found the equipment was out of date.
Four days before he died, Robbie became so severely dehydrated he couldn't walk. Yet a GP, who insisted Will carry his son into the clinic, said it was probably glandular fever.
On the day of his death, Robbie fainted, his lips were blue and his pupils dilated - yet a doctor summoned to the house on two occasions insisted there was nothing wrong.
'We didn't know it, but he was already dying,' says Will.
At the hospital, an emergency crash team was unable to save him and Robbie died in front of his father.
Three days later, Will, then 36, saw his son's medical notes and was horrified to see that the hospital had suspected he might have Addison's, but the GPs had failed to act. Realising the significance of the notes, Will asked the local vicar to witness them.
He then asked the GP practice in Ystradgynlais, South-West Wales, to carry out an investigation. 'I felt they must be suffering hideously,' he recalls. 'I had compassion for them.'
His request was turned down and the family had to wait seven months until an inquiry was set up by the Family Health Service Authority, which was responsible for managing GP services.
It was the notes sent by the authority that alerted Will to 'discrepancies' in the records. Significantly, two hospital letters warning the GPs of the suspicion of Addison's had been altered, so that any reference to the disease had been removed.
'I knew then that these doctors were prepared to lie to avoid being held accountable,' he says. 'I saw red, and that feeling never left me.'
'There's quite disproportionate paranoia within the profession about what might happen if they are obliged to tell the truth'
But little did he realise this was just the beginning of an extraordinary 24-year campaign to make such cover-ups impossible.
It took Will 14 years to get an inquest into his son's death, which ruled it was through natural causes aggravated by neglect.
Still not satisfied, Will committed himself to what often seemed like a David and Goliath battle against the organisations that mustered to protect the GPs, writing thousands of letters - to local professional disciplinary bodies, the General Medical Council, civil courts, the European Court of Human Rights, the Welsh Office and the police.
His campaign exacted a personal toll, as Will battled depression and had to give up work. First and foremost, he wanted an acknowledgement of exactly why Robbie had died, and an apology. But he also wanted to ensure that other patients' families would be told the truth about mistakes that harmed their relatives.
His efforts culminated in the announcement last week of a 'duty of candour' for health providers in England. Wales will follow soon.
This will 'ensure that patients, and their families, are told openly and honestly when unanticipated errors happen which cause a patient harm', Jeremy Hunt, the Secretary of State for Health, said last week.
He added that introducing a duty of candour was a 'once-in-a lifetime opportunity to save lives and prevent avoidable harm, making the NHS the safest healthcare system in the world'.
This new duty is now known as Robbie's Law, in recognition of his father's determined campaign.
What is so extraordinary is that doctors have had no such duty until now.
Dr Jocelyn Cornwell, director of the Point of Care Foundation, a charity involved in improving patient care, says: 'It's scandalous for doctors to continue to believe that they can kill someone, or cause them serious harm, and then cover it up - or conspire among themselves to tell the same false story at an inquest.'
Yet the High Court, the Court of Appeal and the House of Lords all ruled that under the law as it stood, the GPs who failed Robbie, and then lied about it, had the full protection of civil law.
An appeal was made to the European Court of Human Rights, but this confirmed that British doctors 'do not have to tell the truth or even refrain from deliberately falsifying medical records'.
Three years later, in 2003, the Crown Prosecution Service said they did have enough evidence to prosecute 'certain individuals' for forgery and perverting the course of justice, but that as it was by then 13 years after the event they didn't feel it was in the public interest to do so.
While this new duty to tell the truth is being hailed as a sea change to NHS culture, there are concerns that it could become little more than a tick-box exercise.
'Doctors may believe that a duty of candour is the right approach - yet they may be fearful that they won't be supported by the organisations they work for,' says Martin Bromiley of the Clinical Human Factors Group, which works to improve safety in healthcare.
In 2004, Martin's wife Elaine died aged 37 as a result of avoidable errors
during minor surgery. However, he only discovered this after he had to insist
that the hospital carry out an investigation.
'Without the investigation, I'd have been told nothing,' he says. 'As a pilot - a profession where the smallest error is routinely investigated - I couldn't believe that the hospital responsible for my wife's death would not voluntarily insist on total transparency.
'Anyone working in high-risk industries - aviation, railways, the Army, oil and nuclear industries - is taught from day one that human beings make errors, and that it's essential to have multiple layers of defence to prevent such errors happening.'
'I knew then that these doctors were prepared to lie to avoid being held accountable. I saw red, and that feeling never left me'
Every year there are around 3,500 deaths caused by medical mistakes, according to the National Reporting and Learning System, a patient safety organisation set up in 2003.
That's worrying enough, but one of the UK's foremost clinicians, Professor Norman Williams, says in a report he co-authored that it's actually a huge underestimate.
This found that official bodies are told of only between 7 per cent and 15 per cent of all cases of harm to patients. In theory, this could mean at least 23,000 deaths a year.
And far from showing signs of improvement, new statistics from the U.S. suggest preventable harm from medical mistakes has more than doubled in the past four years.
'Medical errors are now the third leading cause of death in America after heart disease and cancer,' says Dr Martin Makary of Johns Hopkins University, who is an expert in patient safety. 'I'm afraid that there is no reason to think that what happens in the UK is very different.
'We have evidence that a healthcare system with a duty of candour sees these numbers dropping.'
Whether the new duty of candour will work here depends on healthcare professionals trusting that they will be backed in their efforts to tell the truth, and not abandoned by their employers.
'We need clinical leaders such as Dr Bruce Keogh, medical director of the NHS, to say very clearly that doctors and their managers will be fully supported,' says Mr Bromiley.
It will help that Clinical Commissioning Groups - the GP-led organisations that have managed the NHS since 2012 - will have the responsibility to ensure that their doctors tell the truth. It seems there will be a financial incentive to ensure that a duty of candour becomes part of medical culture, by cutting their contributions to the NHS Litigation Authority.
Another financial incentive is that when practitioners tell the truth and apologise for errors, the evidence is patients are less likely to sue - with payouts cut by as much as 50 per cent.
Yet Dr Cornwell fears that in the UK 'there's quite disproportionate paranoia within the profession about what might happen if they are obliged to tell the truth'.
For Will Powell, this is why 'Robbie's Law' is so important.
The personal toll to achieve it has been considerable. 'The GPs put up notices telling other patients I was a liar and a fantasist. I challenged this with a libel case that they settled out of court.
'I have been suicidal on more than one occasion, and family life all but disappeared. We had to forgo £300,000 in compensation so I could keep fighting, living on benefits for years and remortgaging the house. But I have a wonderful wife - and together we've managed to keep the family together.'
If the new duty of candour is fit for purpose, all well and good, he says. 'If not, then we'll need to carry on and fight so that individual doctors can be held to account.'
Dr Elwyn Hughes, a partner at the Ystradgynlais group practice, said they had been advised not to make any comment.
Unaccountable: How Transparency Can Revolutionize Health Care, by Marty Makary (Bloomsbury Press 2012).
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