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How many more of us must now die waiting?

WHEN a chest infection forces Jillian McNulty to a hospital ward, she immediately fears for her life.

The 34-year-old Longford woman suffers from cystic fibrosis and is one of 1,300 patients fighting a constant battle to receive the services they so desperately need.

Two years on from the Government's promise to deliver a 120-bed isolation unit at St Vincent's Hospital, no building has yet materialised.

Frustrated and panicked, Jillian echoed the views of fellow patients as she asked: "How many more of us have to die unnecessarily?"

Jillian has already defied the odds by still being still here, as life expectancy in Ireland for cystic fibrosis sufferers is just 30 years.

She told the Herald: "Every time I hear about a CF death, it hits me to the bone. Something has to be done. I'm thinking of the ones coming after me, the younger patients.

"I know of patients who have died, and when I was 14 or 15 I thought it would all be changed long before I turned 30. I hope to God I live a long life but things need to change."

She added: "The Government needs to start listening. It annoys me that people can be so passionate about animals and banning stag hunting but they don't care about people."

The plight of cystic fibrosis has now made it to the national stage, and there is a growing sense of urgency for the completion of the isolation unit.

The project at St Vincent's Hospital was initially due for completion in 2010 and 34 of the 120 beds were to be designated for cystic fibrosis patients.

In the latest setback the HSE has begun talks with a new building company after difficulties arose with the awarding of the initial contract to developer Bernard McNamara's company.

Determined campaigners such as Orla Tinsley have already highlighted the horrific situations that exist for CF patients, but the battle is ongoing.

The condition primarily affects the lungs and digestive system, with a build-up of mucus allowing bacteria to lead to infections and inflammation. Patients are prone to constant chest infections which often require hospital treatment.



BROTHER

But with a bed shortage in hospitals, they are often admitted to wards rather than private rooms, increasing the risk of infection.

Furthermore, sufferers try to avoid A&E departments to minimise infection but they are often left with no other option when they need immediate treatment.

Jillian knows all too well the devastating effects of cystic fibrosis as she has already lost a brother, Derek, to the deadly condition.

Tragedy struck a second time six years ago when she lost another brother Gary, which she believes helped trigger a slow deterioration in her own condition.

"Myself and Gary were extremely close," she explained. "I knew he was dead before anyone else knew. I've heard that grief sits on the lungs. I have had bad patches along the way but in the last three years it has been constant."

Her condition means she is unable to hold down a job. After being made redundant from a part-time position in a local radio station four years ago, her struggle with her illness became a full-time job.

"It's hard enough to keep CF in check," she admitted. "And my day to day routine is manic, so I couldn't possibly manage to work.

"Tomorrow for example I have to go to St Vincent's and I've to be on the road at 7.30am. I have to be up at 5am to clear my lungs and use two nebulisers."

The courageous campaigner has nothing but praise for out-patient facilities in St Vincent's, a far cry from the situation for patients who must be admitted. She told the Herald: "I always refused to go through A&E but last year I was so sick I had no choice. I presented in A&E and sat there for three or four hours beside patients with God knows what kind of infections.

"A patient with a broken ankle came in and was seen within an hour, even though I was sitting there unable to breathe.

"I was on a trolley for 18 hours, in a corridor. I was right beside the nurses' station and there was constant movement. I'd have been better off on O'Connell St.

"This is the centre of excellence for cystic fibrosis in Ireland, which is frightening."



blame

For Jillian and other patients, admittance to any hospital ward is a terrifying experience, as the risk of infection is high.

She explained: "You can't breathe because you're sick and then you're afraid to breathe in case you catch any infection. There are visitors coming in with colds and flus. I can't sleep and I can't eat. In a ward you're off the wall with stress. You just don't know what you might pick up. That's no way to get better. I go in to hospital and I end up getting sicker."

In stark contrast, she described the few available isolation rooms in the hospital as "like being at home.

"The rooms are like hotels, you have everything, you have back-up, and the nurses.

"If there were 34 isolation rooms for CF patients, St Vincent's would be world class."

The setbacks have left Jillian seething, and she fears the long-awaited unit will never materialise.

Dubliner Peter Kennedy is one of the lucky ones - in that his condition is mild enough to ensure he has so far avoided lengthy hospital stays. The 20-year-old said the current facilities "would put you off going in to hospital. You wouldn't go in with other people around you because of the risk of infection".

However, CEO of the Cystic Fibrosis Association of Ireland Philip Watt is confident that the project will be completed by the end of 2011.

He explained: "What's been very unfair is that the blame seems to be pointed at St Vincent's. They have kept us very closely informed and I'm confident of their bona fides. The problem lies with the present conditions in the building industry.

"We're convinced that the hospital is fully committed to the project, they're as disappointed as everyone else."

Ireland has the highest rate of sufferers in the world, and while progress has been made in recent years the services available still lag far behind other countries.

Just three people have received double lung transplants in the last three years.

"There are 30 people on the waiting list for a transplant. People are aware that they should donate kidneys or livers, but I think we need a campaign to educate people about the importance of lung donation," said Mr Watt.

Jillian has launched an online petition, and intends to present the signatures to the Government. Those wishing to support her can join the Facebook page "We need a dedicated 34 room unit for Cystic Fibrosis Patients now."


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