Who will buy me more time ?
"Who will buy me more time ? " pleads Mary Hand, aged 23, who has Cystic Fibrosis and is currently waiting for a lung transplant.
"Who will buy me more time ? " pleads Mary Hand, aged 23, who has Cystic Fibrosis and is currently waiting for a lung transplant.
The future looks uncertain for Cystic Fibrosis patients as treatment services and facilities in Ireland remain well below acceptable international standards. "Since Ireland has the highest incidence of Cystic Fibrosis in the world we should be a world leader instead of lagging behind the rest of the world in providing CF care", says Godfrey Fletcher, CEO of the Cystic Fibrosis Association of Ireland.
The crisis was brought to the public's attention one year ago in the Pollock report.
Since then, the HSE has set up a working group to review the current configuration and delivery of services for CF patients in Ireland and to make recommendations as to the reconfiguration, improvement and development of services. The review is expected shortly.
The Pollock Report highlighted the very serious situation that exists at St. Vincent's University Hospital - The National Adult Referral Centre. During 2005 the hospital was awarded emergency funding of €300,000 by the HSE to address some of the critical issues such as staff shortages and overcrowded facilities.
The Minister for Health allocated €4.78 million in ongoing funding in the 2006 budget estimates which will be used to increase specialist staffing needs across the country.
At present there are four consultants treating more than 1100 patients with cystic fibrosis, and 40 professional cystic fibrosis staff providing treatment when there should be 175. Therefore additional funding provided by the Minister will meet about 50% of the internationally recommended specialist staffing needs. "This is a huge step in the right direction" says Godfrey Fletcher, "but we have a long way to go".
The exposure of immune suppressed patients to cross infection is a critical issue in the management of the health of a cystic fibrosis patient. In his report Dr Pollock described the lack of segregation and isolation facilities at St Vincent's University Hospital in Dublin, as dangerous and creating significant risks of cross infection by virulent organisms. This hospital treats almost 60% of the country's adult cystic fibrosis population. Patients are being treated and staff are working in totally unacceptable overcrowded conditions
It is critical that cystic fibrosis patients be treated in single rooms with en-suite facilities and are not admitted through Accident and Emergency. Younger patients are being exposed to the frightening reality of the disease's progression by sharing wards with older patients.
The death rate among people with cystic fibrosis is intrinsically linked to facilities and specialist staff. Ireland displays a very much higher death rate than does England, Wales and Northern Ireland
Respiratory infections are the main cause of clinical problems and the leading cause of death for people with Cystic Fibrosis, as constant infections lead to deterioration of the lungs.
Although the creation of a specific cystic fibrosis treatment centre at St. Vincent's hospital is part of the current HSE hospital redevelopment programme, as yet no confirmed funding or start date has been fixed for this work.
As part of their efforts to highlight the needs of the growing CF population, the Cystic Fibrosis Association of Ireland will be holding a National Awareness Week from the 30th January - 4th February, culminating in a Gala Fundraising Ball on Saturday, 4th February at the Four Seasons Hotel in Ballsbridge.
The need for sponsorship, additional state funding and the carrying of organ donation cards cannot be stressed enough.
Volunteers for a street collection on the 2nd to the 4th February should contact Martin Cahill at CF House.
An SMS Donation Scheme is now live and will run through CF Awareness Week thanks to Vodafone and Phonovation. Text the message CF to the number 57800 and a donation of €5 will be made to The Cystic Fibrosis Association of Ireland and charged to the phone owners phone bill. (Donations cost €2.50 x 2 plus standard network charges. Service Provider Phonovation, 0818 217100)
ENDS
For further information contact:
Geraldine Collins
PR Consultant
Tel: (01) 282 5158
Mobile: (087) 290 0289
gcollins@cfireland.ie
Godfrey J. Fletcher
CEO
The Cystic Fibrosis Association of Ireland
CF House
24, Lower Rathmines Road
Dublin 6
Tel: (01) 496 2433
Fax: (01) 496 2201
Email: gfletcher@cfireland.ie
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