By SUE REID
07 January 2008
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 were ordered not to
declare the truth on his death certificate.
Doctors ordered to not record hospital infections on death certificates
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."
• Additional reporting by Suzanne Finney.