CYSTIC FIBROSIS DEATH TOLL HITS 14-YEAR HIGH; CARE SERVICES SLAMMED.

Byline: By DEMELZA de BURCA

DEATHS from cystic fibrosis are at their highest level for 14 years, it was revealed yesterday.

Last year 30 people died from the disease, the highest number since 1991, when it claimed the lives of 26 people.

Cystic Fibrosis Association of Ireland chief Godfrey Fletcher said the organisation was concerned by the record number of deaths.

He added: "We do not want to be scaremongering.

"We just want to highlight our concern and hope and pray last year's figure is a just blip."

It is Ireland's most common life-threatening inherited disease.

About one in 19 people are carriers of the gene responsible for the disease.

Around 1,200 people in Ireland have cystic fibrosis, which affects the glands.

The HSE said E6.8million was invested in dedicated services in the past two years and 80 extra staff recruited.

There is also a major investment planned for the national cystic fibrosis referral centre in St Vincent's University Hospital, Dublin, to provide single units for patients.

Mr Fletcher said there are proposals there for recruiting 80 additional staff but they have not been put in place yet.

He added planning permission has been sought to develop a 102-bed unit for immuno-comprised patients at St Vincent's - but this will take two years to build.

Cystic fibrosis patients at the hospital are at risk of infection because they are sharing rooms and facilities.

Sufferer Joseph Lawlor's 24-year-old sister Tracie died last November from the disease. The 20-year-old, from Castlebridge in Co Wexford, said she was terrified of going into hospital because of the risk of infection.

The Lawlor family has vowed to campaign for improved services.

They believe Tracie would still be alive if the facilities she needed had been available.

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CAPTION(S):

CONCERN: Mr Fletcher