How doctors lie on death certificates to hide the true scale of the toll from hospital infections
Joan Horne once worked for the National Health Service. In her day the wards were scrubbed with bleach, while nurses washed their hands with soap and water before caring for a patient. If not, a strict matron wanted to know why.
She has never forgotten the golden era of the NHS. So when 78-year-old Joan watched Edwin, her husband of 37 years, die after catching a deadly superbug at her local hospital, she began a fight for justice.
Just before Christmas, a tape recorder in her hand, she marched off to Barnsley Hospital in Yorkshire and forced managers to admit that not only had Edwin contracted a lethal infection called Clostridium difficile (C. diff) as a patient, but that doctors failed to declare the truth on his death certificate.
Joan said: "I fear this kind of cover-up is happening at hospitals all over the country. I miss Edwin terribly, but the way we lost him and dishonesty by the hospital about the real cause of his death has made it all much worse for me and my family. I was desperate to bring Edwin home. The hospital was dirty. I found a used syringe under the bed, soiled cotton wool pads left on his floor and there were human faeces smeared on the door. Looking back, it is no surprise he caught a superbug."
Edwin died on April 12 last year aged 82. He had been in hospital for just a fortnight after complaining of feeling frail while on holiday.
Although Edwin had suffered from rectal cancer in the past, the disease was in remission and Joan says that he was expected to make a full recovery at the hospital - until he caught C. diff.
His death, and thousands of others, lie at the heart of a growing scandal over NHS superbugs. Yesterday Tory leader David Cameron said hospitals should be fined for every patient who catches an infection on their wards. But would such a crackdown just lead to more secrecy about superbugs?
In 2006 almost 56,000 elderly hospital patients caught C. diff, which is spread by poor hygiene, dirty hands and soiled bedding. Amazingly, we still don't know how many of these people died because the figures have not yet been released by the NHS.
In 2005, the latest year that death statistics for C. diff were available, 3,807 hospital patients died, a rise of almost 70 per cent over the previous 12 months.
But the truth is that this figure may be utterly meaningless because many people, including Joan, believe there is a cover-up over the figures.
As this investigation has discovered, when a person dies from a hospital superbug the details are often left off the death certificate. The practice has become so widespread that last autumn the Government's chief medical officer, Sir Liam Donaldson, wrote to hospitals and doctors warning them that any dishonesty has to stop.
He said: "There is still a widespread belief that the figures underestimate the mortality associated with both MRSA and C. difficile. This is compounded by the idea that doctors are reluctant to put information about hospital-acquired infections on certificates, or indeed that they are discouraged from doing so."
But will this make hospitals tell the truth? Phil Barnes, a medical negligence lawyer specialising in hospital infections at Anthony Collins, the Birmingham solicitors, said: "I often attend inquests of people who have died in hospital. Their families tell me that their relative had C. diff, yet it is not on the death certificate. I suspect that there are many cases like this.
"The doctors fail to put all the contributing factors on the certificate. If a patient has died of bronchopneumonia caused by a hospital-acquired infection then they will just put down bronchopneumonia. When an elderly patient contracts C. diff they are sick, they vomit, have diarrhoea, and that causes dehydration and kidney failure. Time and again doctors will just put down kidney failure as the cause of death."
None of this surprises Marion Ham. The 60-year-old widow fought a sevenmonth battle to get a hospital and a pathologist to admit that a superbug had contributed to her husband David's death in October 2006.
He had a minor breathing problem but caught the most common hospitalacquired infection, MRSA ( Methicillinresistant Staphylococcus Aureus), during a simple procedure to drain his lung at the Conquest Hospital in Hastings, Sussex.
Marion says David was meant to stay in hospital for one weekend. Three weeks later he was dead, after catching MRSA.
Yet his original death certificate did not allude to the superbug, but claimed he had succumbed to pneumonia and "adult respiratory death syndrome". In other words, his lungs had given up.
Marion recalls: "I was horrified to find that David's operation was conducted in a busy, dirty ward and beside another seriously sick patient. He went in on a Saturday. By Tuesday he had a high fever, by Thursday he was on high doses of oxygen, by Friday he was in intensive care. Seven days after going into hospital for a minor operation he was on life support and it was downhill from there on until he died.
"A hospital nurse did mention MRSA to me when David became ill but so casually I didn't take much notice. The hospital never warned it could kill him."
After the funeral, Marion went to see the pathologist at the hospital who had conducted a post-mortem on David. He told her that it was more than likely that MRSA had contributed to David's death. But the pathologist said that because her 60-year-old husband had been given so many antibiotics to try to save him, they could have disguised another ailment.
She persisted. Finally, the pathologist agreed to ask for an independent second opinion. It resulted in the death certificate details being changed to include a reference to MRSA.
"I was given some peace by that," she says. "I was also pleased to find that the hospital has now opened a treatment room off the ward where David died so small operations can be carried out there in complete isolation." The hospital declined to comment on the case.
The Government says that there were 6,381 cases of MRSA in England last year, although some experts believe it could be nearer to 100,000. The latest figures from the Health Protection Agency and the British Paediatric Surveillance Unit show that 74 cases involved children, three-quarters of them babies of less than a year old. It is not known how many of them died.
Data from the National Office of Statistics shows that deaths from MRSA rose from 51 in 1993 to 1,629 in
2005. But the startling totals are likely to be the tip of the iceberg.
Graham Tanner, chairman of the National Concern for Healthcare Infections, has warned there is 'vast underreporting' of C. diff and MRSA. The number of hospital-acquired infections in England alone is, according to his organisation, really 230,000 a year, with an average mortality rate of 15 per cent.
Only this week, a worried doctor told me that MRSA and C. diff is rife in London's major teaching hospitals. He said that of 16 patients in a single ward at one hospital 'four have C. diff and three have MRSA, and that is typical of the situation in every ward'.
Meanwhile, a funeral director in the North of England went further. He estimated that four in five of all elderly hospital patients dying in his seaside town near Blackpool have MRSA or C. diff.
Tony Field, the chairman of MRSA Support UK - which advises hundreds of families who have lost loved ones - believes these accounts, although they are anecdotal. "By law, the doctors and pathologists should be putting down if a hospital infection is a primary or a secondary cause of death. We are hearing from family after family that the death certificates are not mentioning the truth, so obviously the real figure is covered up."
Graziella Kontowsky, founder of a similar support organisation, C. Diff Support UK, agrees. 'I used to be a nurse and there is a pattern if you look at the dead patients' notes. With C. diff the white blood count goes up sky high and then the kidneys of the patient pack up. You can tell it is a sudden infection which developed in hospital, but the death certificate from the hospital doctor or pathologist will just state kidney failure.'
Meanwhile, Prof Hugh Pennington, one of the country's top microbiologists and an expert on MRSA, believes there is going to be a drastic reaction from patients themselves. "People, particularly older people, are now so scared of catching a deadly infection while being treated by the NHS that they will avoid going to hospital at all or save up for months to pay privately. Either way, their health could be at risk."
On the internet forums discussing hospital-acquired infections there are cries for help from families all over the country. One letter posted this autumn from a Stephie Filby is typical of hundreds posted. She wrote recently: "My father had a stroke last summer. Within a few weeks of being in hospital he had cut his foot on the bed and had contracted MRSA. He opted to have an amputation.
"He came home a month later and in a week was having breathing difficulties. He was re-admitted with pneumonia. While there he contracted C. diff. He came home and died last Sunday. To make matters worse, the doctor is refusing to put C. diff on the death certificate as either the cause of death or even a contributing factor."
Tellingly, Stephie's letter adds that the registrar who prepared her father's death certificate told her: "The doctors won't put the truth on the certificates as they like to keep their figures down. So if they can blame the death on something else, they will."
Gillian Lebbon, a midwife, believes this also happened in the case of her father, Ronald, who died last year at 81 in a large NHS hospital near Portsmouth. The former quantity surveyor was having surgery on a ruptured oesophagus, and was expected to make a full recovery. Instead, he caught MRSA in his lungs from infected drainage tubes which led to pneumonia.
"After my father died the health authority rang my mother, Jean, and asked if she had any objection to pneumonia being put on his death certificate. There was no mention of MRSA and my mother was so saddened by my father's death she did not create a fuss."
Yet when Ronald's family were told he had the superbug, the nurse in charge said she was not surprised as he was being treated in an open ward where MRSA was rife. "I feel now there was a cover-up to keep the MRSA figures secret at the hospital," says Gillian.
But what of Joan Horne? She and her husband Edwin had just enjoyed a 12-day winter break in Malta when he said he felt inexplicably tired. Worried about his health, they flew home a week early to Manchester airport.
Edwin was admitted to Wythenshawe Hospital in Manchester on March 23 last year. When doctors could not find anything wrong with him he was transferred nearer home to Barnsley Hospital five days later.
There, Edwin seemed to be improving. After nearly a week, his bed was put in a cubicle off the main ward. Joan was told it was because he had terrible diarrhoea.
It was only on April 7 that Joan and the couple's family were finally informed by the hospital that he had contracted a potential killer, C. diff. By then Edwin was weakening fast but told his wife: "Don't fuss love."
Joan says: "I realised that C. diff is highly dangerous and yet we'd all been holding Edwin's hand and giving him a kiss. People were allowed to wander in and out of the cubicle freely.
"When Edwin died his death certificate said the cause was cancer, chronic kidney disease and a urinary tract infection. The superbug was never mentioned. It was a lie.
"It was only when I went to the hospital with my tape recorder and had a meeting with the officials there that they admitted to me C. diff should have been put on the certificate." Now Joan hopes that the wording will be changed.
A spokesman at Barnsley Hospital said: "We have been open and honest in our discussions with the late Mr Horne's relatives and have apologised to them if the care we gave was not up to our usual very high standards.
"We are currently reviewing the guidance we give doctors on completing death certificates to see if there is a benefit in recording C. diff when it has a lesser bearing on the cause of death."
Today Joan and her family only have their memories of Edwin. "When we were on holiday in Malta, he sat on the balcony, smiling down while I played bowls on the grass below," remembered Joan this week at her home in Yorkshire. She adds sadly: "Edwin was happy and he didn't deserve to die simply for trusting the NHS to make him strong again."
By SUE REID
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