Anger is leading to organisation, writes Eithne Donnellan, Health Correspondent
Tony Kavanagh spent nine days in hospital last September undergoing an operation to improve blood flow to his legs. He was recovering well after surgery but within days of being discharged his condition suddenly deteriorated.
The Galway man began to feel a burning sensation running through him. "I felt extremely ill and it was as if my whole body went on fire. The burning sensation went from the soles of my feet right up to my head. The pain was just unbelievable. It was absolutely horrific."
He had contracted MRSA, the potentially fatal superbug which is easily picked up in hospital but difficult to shake off.
Kavanagh was readmitted to the Dublin hospital which had carried out his operation and was placed on the critical list. He was in hospital for almost three months.
"They didn't expect me to actually pull through," Kavanagh recalls. He is in no doubt that his long sojourn in hospital was as a result of picking up MRSA during his initial visit.
And he is now one of a growing number of Irish people prepared to speak out about his experience of MRSA in the hope something will be done to tackle its spread in our hospitals.
MRSA or methicillin-resistant Staphylococcus aureus, is commonly found on the skin and many people suffer no ill effects from it. However if it gets into the bloodstream the consequences can be fatal.
Kavanagh feels health professionals and those managing hospitals are far too blasé about it. "The medical profession tell people they have MRSA and not to worry about it but you literally go through hell," he said.
He believes the chief executives of hospitals should be held accountable for "putting patients lives at risk". If they were, MRSA would be taken more seriously, he feels.
He also contends patients should ask hospital staff to ensure they have washed their hands before examining them.
Meanwhile Teresa Graham from Tramore in Waterford couldn't believe she wasn't advised to take precautions to stop the spread of MRSA after her husband contracted the bug while being treated for cancer at Waterford Regional Hospital last year. She used to go from his bedside to another ward to visit a different patient and nobody ever told her to be careful, she says.
"I was also taking home my husband's washing and nobody said to be careful. Nobody gave me a talk about it. I only know what I found out on the internet".
Her husband Dermot, who has subsequently died, was a patient at the hospital for just over nine weeks and it was midway through his stay when she happened to meet a nurse coming out of his room wearing a gown and gloves, that she accidentally found out he had MRSA.
When she asked a doctor about it he allegedly shrugged his shoulders and said: "It's everywhere."
"What I really felt bad about was the amount of extra suffering he had to go through as a result," she said.
A part-time lecturer at Waterford Institute of Technology, she was also concerned at the general standards of hygiene in the hospital. She wrote to the Minister for Health Mary Harney to air her concerns and noted the response has been to hire consultants to carry out an audit of cleanliness in our hospitals. "We know there is a problem and what's causing it but it has to be in consultant-speak before they do anything about it."
Age is no barrier to becoming infected with MRSA as another MRSA victim, Cavan woman Tracy Poynton, found out after being admitted to hospital last December to be treated for pneumonia. She was six months pregnant at the time.
During her second week in hospital she was told she had MRSA and was asked to go home in case she would spread it to newborns on her ward. "I felt diseased, disgusted and violated," she said.
The birth of her baby was a worrying time and when her daughter Crea was born six weeks ago she too was found to have MRSA. "We thought the baby would die. It was on her umbilical chord.
"I asked in the maternity unit if they ever had a patient with MRSA giving birth before. They said they hadn't. I definitely picked it up in the hospital but they deny it."
All of these patients want answers to one basic question. How could they or their relatives have picked up such a serious bug in hospital?
They may find it difficult to get answers, however, considering the experience of the Independent Clare TD James Breen. Last October he told the Dáil he himself had contracted MRSA in hospital and had lost some of the power in one arm as a result. Ms Harney sympathised, mentioned she was taken aback that doctors had to be issued with guidelines on hand hygiene, and promised to investigate.
Last Thursday he raised the matter in the Dáil again. "I have heard nothing from the Tánaiste regarding her commitment to the House in October 2004 to investigate my brush with the MRSA superbug," he declared, adding that he had nearly lost his life because of it.
He is supporting families of those who have contracted MRSA as well as MRSA patients themselves who want to meet Ms Harney to impress on her the need to lift the wall of silence which they feel has been allowed build up around and shroud the seriousness of MRSA. Hospitals for example are not obliged to publish the number of cases of MRSA they deal with every year. In the UK the situation is different. MRSA infections are now counted for hospital league tables.
Figures published by the UK's Office for National Statistics earlier this year indicate the number of deaths in which MRSA had been cited as a cause had doubled in four years from 487 in 1999 to 955 in 2003.
Last week following her appointment as Britain's new health secretary, Patricia Hewitt said the rate of MRSA infections could be brought down. She said Guy's and Thomas' Hospital in London had one of the highest number of MRSA cases in the country just three years ago.
"They established new, tough procedures. And within a year they'd halved the number of MRSA cases," she said.
Here all we know is the overall number of MRSA cases reported annually. Provisional figures for 2004 indicate 533 cases of MRSA were notified last year.
We also know a number of civil actions are pending against hospitals as patients prepare to sue for damages after being infected with MRSA.
Ms Harney told the Dáil last week that a national strategy was published to control antimicrobial resistance, including MRSA, in 2001 and to date approximately €20.5 million had been made available for its implementation.
She also said effective infection control measures, including environmental cleanliness and hand hygiene, are central to the control of hospital-acquired infections, including drug resistant organisms such as MRSA.
Hospital overcrowding is also considered to be an issue and is something unlikely to be solved in the short-term.
But pressure on the Minister and the Government to take action on MRSA is likely to intensify this week with the launch of a new patients lobby group called MRSA and Families. It will hold its first public meeting in Kilkenny on Friday, to be chaired by Fianna Fáil TD John McGuinness. He said he would be looking to sit down with the group and Ms Harney to impress on her the urgency of dealing "with this escalating crisis in our health service".
As when Patients Together was formed and members began telling horror stories of their experiences on trolleys in A&E, this new group, which was set up by Kilkenny woman Margaret Dawson whose husband Joe contracted the superbug in a Dublin hospital last year, is likely to be a major force for change.