Though Ireland has the highest incidence of cystic fibrosis, patients face the worst outcomes, writes Fiona Tyrrell
Over half of cystic fibrosis patients have expressed significant or extreme anger at their experience of waiting for medical services and facilities, according to a survey conducted by the Cystic Fibrosis Association of Ireland (CFAI).
Levels of anger expressed at waiting times among cystic fibrosis (CF) patients were higher in Dublin than in the rest of the country, reflecting the increased pressure on the capital's hospitals.
One in four CF patients surveyed waited for admission to hospital through A&E department during their last hospital experience. This goes against international best practice recommendations for CF care.
One third of those spent two days or more in A&E, waiting for a hospital bed.
The survey also revealed that more than one in eight of patients surveyed said they were "very concerned" about the threat to their life posed by attending poorly-resourced hospitals for necessary treatments.
Close to 60 per cent of those surveyed expressed strong concern that their health would deteriorate as a direct result of waiting for admission to hospital for specialist treatment.
The survey, carried out in January, involved interviews with 85 cystic fibrosis patients in Ireland, representing 14 per cent of the CF population in the State.
According to Godfrey Fletcher, chief executive of the CFAI, CF patients are sick of waiting for lung transplants, for admission to hospital, for basic inpatient facilities, for safe ward facilities and for the required staffing levels.
"People with cystic fibrosis tend to have a shorter life expectancy than most people. Many die in their teens, twenties and thirties. It's just not fair that they should be spending so much of their life waiting for the most basic of services."
Ireland has the highest instance of cystic fibrosis and the most severe form of the disease, yet people with cystic fibrosis in this country have the worst outcomes in the developed world.
Cystic Fibrosis is Ireland's most common life-threatening inherited disease, affecting around 1,100 adults and children.
It affects the internal organs, especially the lungs, the pancreas and the digestive tract, covering them with thick sticky mucus. As a result, sufferers are prone to cycles of lung infections and have difficulty digesting and absorbing adequate nutrients.
Two years after an independent review of CF services in Ireland found that the majority of CF patients were being treated in facilities that were understaffed and dangerous, this new survey reveals that patients believe that little has changed.
Eighty per cent of CF patients surveyed said there was no significant improvement in treatment levels since the publication of the Pollock report.
In the wake of the report, a Health Service Executive (HSE) working group was established. The group completed its review some 10 months ago, but a report of its findings has yet to be published.
Money has been allocated to address severe staff shortages and 80-90 per cent of manpower needs should be met by 2008, says Fletcher.
However, little has been done to address the very serious problems regarding lack of proper facilities for CF sufferers, he says.
Many of the 13 centres that treat CF patients in the country "are creaking at the seams", he says and there has been no move on the creation of a specific CF treatment centre at St Vincent's hospital. The level of anger among the CF community is very high, Fletcher says.
One CF sufferer, Alison Kenny, a 36-year-old mother who has been on the transplant list for 18 months, recently spent an entire day in her local shopping centre handing out organ donor cards, with her oxygen tank in tow to highlight the situation.
The issue of proper segregation facilities in all hospital departments, cannot be over-stated, Fletcher says. Chronic infections have a significant influence on the health and survival rate of people with CF.
The most dangerous bacteria to CF patients is pseudomonas aeruginosa. New research conducted in Belfast by Prof Stuart Elborn, reports that patients with pseudomonas have a 2.6 times higher risk of death. In Dublin, CF patients have a chronic pseudomonas infection rate of 67 per cent, according to the Irish Cystic Fibrosis Registry.
In Limerick, where it is possible to implement a full segregation of CF clinics, the rate of chronic pseudomonas infections stood at 11 per cent in 2005.
All beds for CF patients should be in single rooms, with en-suite toilet and shower facilities, to prevent the risk of cross infection, according to the CFAI.
This is one of eight recommendations outlined in a policy document, published today to coincide with the launch of the organisation's Sick Waiting campaign.