THE full shocking extent of the outbreak of a ‘blood-eating’ bacterial infection that may have affected thousands of British heart patients can be revealed by The Mail on Sunday today.
And the first survivor of the disease to speak out has told of her anguish after being warned that it may still kill her.
We reported last month how the bacterial disease mycobacterium chimaera (MC) had been transmitted to heart-valve patients via contaminated surgical equipment.
The number of victims is unknown, forcing the NHS to embark on a mammoth project to trace the 47,000 people who have had surgery since 2013 – the longest period that anyone could have incubated the slow-growing bacteria and still be alive.
The Medicines and Healthcare Products Regulatory Authority (MHRA) has now revealed that in the past two years it has received reports of the killer bacteria being found in more than one in three machines used to heat and cool blood in use in NHS hospitals nationwide.
At least 65 of up to 150 machines have been found to be contaminated. The MHRA could not confirm the make of the units or whether the contaminated machines were still in use.
So far, 26 cases of MC infection contracted during heart surgery have been reported to Public Health England (PHE), including one seven-year-old child.
The stories of two fatalities, Alan Diplock, a fisherman from Peacehaven, Sussex, who died from MC last year aged 65, and Coventry victim Brian Smith, 73, a retired insurance broker, were revealed by this newspaper in January.
Of those who have survived, nine are fighting for their lives and just two are said to have recovered.
PHE says it is expecting more infections to emerge.
One of the victims is Patricia Line, a former NHS nurse, who contracted MC during a heart-valve operation in August 2014, but did not start to suffer from symptoms for 19 months.
Mrs Line, 67, from Birmingham – the first affected patient to speak publicly – said: ‘No one can tell me if I will survive this. Three other people treated at the same hospital as me have already died.’
Her MC diagnosis was preceded by a small stroke, and an unexplained high temperature. She recovered but then developed what seemed to be severe flu which continued for two weeks.
‘I was treating myself at home but I really felt as if I was on my last legs,’ she said.
‘The GP had no idea what was wrong. My family were really worried because I had such a fever, and finally called an ambulance. By the time I was hospitalised, the infection had spread to my major organs, my blood, my bone marrow.’
Her life is dominated by daily doses of seven tablets representing a cocktail of three antibiotics.
The powerful drugs themselves threaten to damage her sight permanently and are causing a range of other side effects.
‘I feel constantly ill,’ added Mrs Line. ‘All they will say is that although I appear to be tolerating the treatment, my outlook is uncertain. I feel very vulnerable. It’s a horrible feeling.
‘I am one year into a two-year course of antibiotics and they can’t tell me whether I will survive or not,’ she said.
‘This is a very slow-growing infection. I honestly don’t know what the future holds.’
Her case raises the terrifying prospect that even if affected people are found in the planned patient recall, it may already be too late to save them.
Mrs Line spoke out as an inquest was opened into what is suspected to be one of 15 British deaths from MC, which kills by ‘eating’ its victims’ red blood cells.
A 68-year-old man from Weybridge, Surrey, died in August after battling MC.
The former investment banker contracted the disease following a heart-valve replacement three years earlier at exclusive private hospital in London.
Last week, Westminster Coroner’s Court said it was still gathering evidence ahead of a planned inquest next month.
In the US, groups of affected patients and their families are gearing up for a major legal battle with compensation claims expected to run into millions, opening the door to similar claims here.
In America, questions have been raised about the safety and cleaning instructions issued for machines involved – specialist heater-cooler units which run blood alongside tubes of cool or warm water to control its temperature during open-heart-valve replacement surgery.
Some of the units have been found to cause infection in patients by releasing fine sprays of bacteria-laden water into the air, which then enters an open wound. Investigations have suggested that the bacteria, normally found in soil and water, may have contaminated the units during the manufacturing process.
University Hospital Coventry, where six heart-valve replacement patients have been infected with MC, said it has now changed its procedures. Three patients who were treated in 2013 and 2014 have already died. No cases had been identified at the hospital since a national alert was issued in 2015.
A spokesman said: ‘We have worked with PHE to ensure we continue to meet all national guidelines on testing and decontaminating units. We remain vigilant and we discuss the potential risks with all patients undergoing heart-valve replacement or repair.’
The alarm about MC was first raised by Nottingham solicitor Paul Balen, who was contacted by the family of Alan Diplock.
Mr Diplock’s daughter Kerry-Anne Orakwusi is distraught that doctors failed to diagnose the infection in time to save him.
‘It’s fairly clear this risk was known about from 2012 onwards but the information was not widely circulated,’ said Mr Balen.
Cases are now emerging from hospitals all over the country, including Brighton, Manchester, Wolverhampton and London.
The first identified MC infection dates back to 2007. An international alert followed a cluster of six cases in Zurich, Switzerland, more than four years ago. Cases have since been reported worldwide including in Germany, the Netherlands and Australia.
According to Rani Sommerstein, an infectious-diseases expert at Bern University and one of the Zurich investigators, the hospital there was unable to get rid of the MC bacteria in its blood heater-cooler machines, so it replaced them in 2014.
He said: ‘Every cardiac unit in the world should now be doing everything to make sure there are no more cases, and looking to identify former patients who are ill.’
An NHS spokesman said advice about the bacteria risk was circulated twice to cardiothoracic surgery providers in 2015.
She said: ‘Investigations have shown that the risk to patients from surgery where heater-cooler units are used is very low. Any infection risk is far lower than the risk of delaying life-saving cardiac surgery.’
Thousands of the heater-cooler units are sold globally and are used in 70 to 80 per cent of the 20,000 heart-valve replacement operations carried out in Britain each year.
Mark Garvey, spokesman for the Infection Prevention Society and principal clinical scientist in microbiology at Queen Elizabeth Hospital Birmingham, where some MC survivors are being treated, said infected patients can incubate the bacteria for several years, and the infection is hard to identify until it has actually caused illness.
Testing could therefore produce false negative results.
Once bacterial infection has progressed away from the bloodstream and into bone and other tissue that does not have circulation, it becomes harder for antibiotics, which are carried in the bloodstream, to reach it. Mr Garvey said: ‘We just don’t know what the risk of this infection is.’