"I can't put into words how we feel about it. The whole thing was disgraceful." Frank Robinson is talking about how he and his wife Janet view the death in 2006 of their 20-year-old son, John, after he was misdiagnosed by A&E staff at Stafford hospital, and its attempts to keep its responsibility for his death secret, which compounded their grief.
The Mid Staffs care scandal, named after the NHS trust that runs the hospital, has prompted a series of official inquiries – the biggest of which reports on Wednesday – and has become a byword for the NHS at its very worst. Even by the abysmal standards that prevailed there between 2005 and 2009, when an estimated total of between 400 and 1,200 people died as a result of neglect and negligence, John Moore-Robinson's case was shocking.
The fit telecoms engineer had hurt himself when he was thrown into and over the handlebars of his mountain bike while out riding with friends on 1 April 2006 in Cannock Chase, a hilly rural park not far from the hospital. After arriving by ambulance at Stafford A&E, he told a junior doctor that he had pains in his chest and lower abdomen. He then had an x-ray. "Although he was semiconscious, in excruciating pain, vomiting and couldn't stand, he was told by a junior doctor he had bruised ribs and discharged home with painkillers," recalls his father. It proved a terrible error.
"The doctor said that, if he took the painkillers and had a good night's sleep, he'd be OK. Being a young lad, John believed the doctor and thought he'd be fine," recalls Frank. But in the early hours of the next morning John collapsed at home in Leicestershire and died of a seizure brought on by massive blood loss caused by the real, untreated source of his pain – a ruptured spleen, which the doctor had missed.
A brief inquest a year later did not expose the hospital's blunder. But when Frank and Janet gave evidence in 2008 to an independent inquiry into care at Stafford, they received hospital documents relating to John's death they had never seen before. The hospital had conducted its own internal inquiry but not disclosed its findings to the inquest or the family.
In his report Dr Ivan Phair, a consultant in the A&E unit, said John should have had an ultrasound examination. If he had, the damage to his spleen would have been identified and he would have had surgery to remove his spleen.
"The premature death of Mr Moore-Robinson in my opinion was an avoidable situation. I feel that an independent expert would criticise the management afforded to him by the staff at Mid Staffordshire General Hospitals NHS Trust and that there is high probability that the level of care delivered to Mr Moore-Robinson was negligent," he wrote.
The paperwork also revealed that Kate Levy, the trust's head of legal services, twice wrote to Phair asking him to remove that passage. "As reports are generally read out in full at the inquest, and the press and family will be present, with a view to avoiding further distress to the family and adverse publicity I would wish to avoid stressing possible failures on the part of the trust," Levy wrote.
She later told the inquiry that as a solicitor she was bound to act in the best interests of the NHS trust, and an early admission of liability, before the cause of death was established, would have been wrong.
"We feel very bitter. For three years we were denied knowledge of what went wrong in John's case," says Frank. "We see it as a deliberate cover-up to protect the trust's reputation. At the time, the trust's code of conduct said it should be open with families when things go wrong, but they weren't open, honest or truthful with us at all."
Stuart Knowles, another trust solicitor, represented the trust at the inquest in 2007 but never disclosed the existence of Phair's report.
When he and Levy gave evidence to the public inquiry, chaired by Robert Francis QC, which reports this week, neither could remember which of them had decided to withhold it from the coroner.
Both defended their behaviour and explained that they saw their first duty as being to their client, the trust, and not to John's family.
Frank and Janet gave evidence to an earlier inquiry, also conducted by Francis, into care at the hospital, and also to the latest, lengthy inquiry into why failings at the trust went unaddressed for so long.
Their son's death not only illustrates the appalling lack of care there in 2005-09 but also the complete failure by NHS officialdom, including a range of bodies which were meant to be supervising and regulating the hospital, to properly investigate rising concerns among patients and then intervene.
"The evidence about John Moore-Robinson's case was among the most poignant heard by the public inquiry," says Peter Walsh, chief executive of the patient safety charity Action against Medical Accidents (AvMA), which advises the family.
"Although there were even worse examples of poor care and neglect, the way the trust dealt with the aftermath of John's death goes to the very heart of what was rotten in the trust and why we need to stamp out the culture of cover-up and denial that permeates parts of the NHS," Walsh adds.
"Janet and Frank, like many others around the country, had a double gross injustice; having needlessly lost a loved one, they then had insult added to injury by a lack of openness afterwards."
Their experience means they both strongly support the call by AvMA, which is also supported by Liberal Democrat MPs such as the health minister Norman Lamb, for all NHS staff to be under a legal "duty of candour" to tell patients and families when mistakes occur.
"The government is pushing ahead with a watered-down version of that which I fear will be worthless and will allow cover-ups to continue," says Frank.
As he remembers the young son who had just bought a car and moved into his own house with his brother Clarke – "John was a gentle giant and was loving life" – Frank is hoping that Francis's landmark report will prevent other families experiencing the same double heartbreak as he and Janet, and prove a watershed for patient safety.
"The government will have a chance to make big improvements to the regulation of the NHS and change the NHS's culture to minimise the risk of poor care, which is still rife. Ministers should implement all of Francis's recommendations and change the NHS for good."