healthmedicinet

• Will Powell, 60, from Swansea, watched 10-year-old son Robbie die at age 36
  
• Most of the doctors who saw him didn’t read crucial notes
• He found ‘doctors were prepared to lie to avoid being held accountable’
  
• Embarked on 24-year campaign to make such cover-ups impossible
• Will wants patients and families to be told openly when errors happen

By
Jane Feinmann

PUBLISHED:

19:26 EST, 31 March 2014

|
UPDATED:

19:28 EST, 31 March 2014

Robbie Powell died as a result of medical negligence more than 25 years ago

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found the equipment was out of date.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.

L-R Justine (14), Will Powell, Robbie (10) Diane, Ian (12)

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.’

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.

Robbie’s father Will has campaigned to make it illegal for doctors to cover up their mistakes

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.’

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.

Will committed himself to what seemed like David and Goliath battle against orgs that protected GPs

‘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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