The Cystic Fibrosis Association has said it is "delighted" with a commitment from the HSE to establish a neonatal screening programme for the condition later this year, writes Theresa Judge.
However, it is still unclear if actual testing of samples from newborn babies will begin in 2008.
The HSE said its 2008 service plan identifies such a screening programme "as a goal to achieve for this year".
However, yesterday a HSE spokesman said no further detail could be given at this stage about a timescale for delivery of the screening programme.
A leading expert in cystic fibrosis (CF) and chairman of the association's medical council, Dr Charles Gallagher, said that screening was "a high priority for the cystic fibrosis community".
"Earlier detection, along with the resources needed to treat people, will definitely have very significant benefits both in terms of quality of life and I believe for life expectancy," Dr Gallagher said.
He said the introduction of neonatal screening would have "resource implications" as it would result in an increase in the numbers of children attending for treatment initially, but he believed the HSE was taking this into consideration.
A recent media furore highlighted the lack of facilities for cystic fibrosis sufferers in this country. The publicity was welcomed by families who have fought hard for their children and are ready to emigrate if it doesn't improve
Philip Ahearne with his wife Aisling and children Tiarnan (far left) Saoirse (right), who both suffer with cystic fibrosis, and their brother Connell
Cystic fibrosis has been in the news of late. Orla Tinsley, a 20-year-old with CF, raised a storm of sympathy when she was heard on Joe Duffy's Liveline. Speaking from her hospital bed, she told of her fear that being in hospital leaves her vulnerable to dangerous infections.
All week, listeners heard CF sufferers venting their anger and frustration. They desperately need a special unit with isolation rooms. They have them in America, Europe and in Northern Ireland, but not here in...
Click this link to watch the late late show from last Friday night, when Pat raised more awareness about CF on his talk show. Interviews with Family members of CF sufferers, and Prof McEllvaney (Beaumont Hospital) also featured.
A talk by a fellow pupil about living with cystic fibrosis has inspired youngsters from a Paignton primary school to help raise money to find a cure for the illness.
Lucy Yates, 10, spoke about the difficulties of coping with the disease during an assembly at Foxhole Primary.
Lucy's brother Richard, eight, also has cystic fibrosis and is also a pupil at the school.
After Lucy's talk, the pupils decided to raise money this year for the Cystic Fibrosis Trust, which helps fund research into the disease and supports families.
The school's first donation was a cheque for £215.72, raised at the four Christmas plays staged by the different year groups, and presented to Audrey Williams from the trust.
Headteacher Jo Tucker said: "Lucy's talk to the children inspired them to raise money for the trust, as they could see both Lucy and Richard were coping with great difficulties every day.
"We are really pleased to be able to support the trust this year."
Cystic fibrosis is the UK's most common life-threatening inherited disease.
It affects over 8,000 people in the UK. Over two million people in the UK carry the faulty gene which causes the disease, around one-in-25...
This astounding, life-affirming film is the one essential programme of the week. Alex Stobbs is a 16-year-old music scholar at Eton with a prodigious talent. At the age of 8, he was touring Europe as a chorister. He also suffers from a virulent form of cystic fibrosis, which is destroying his lungs and has left him partially deaf. Just to stay alive, he needs suitcases of drugs, exhaustive physiotherapy, overnight oxygen and full-time nursing. Despite an illness that would cripple most people, this mercurial bundle of energy decided to conduct Bach's epic choral work Magnificat in the chapel at Eton.
This is the story of three months of rehearsals, and the impact of Stephen Walker's film is overwhelming.
Jamie at Home Channel 4, 8pm/8.30pm
Although this is a double bill, some viewers may find they can watch only one episode at a time - after half an hour, you risk falling into a deep and ravenous trance. In the first part, Jamie makes a "zingy, tongue-slapping" winter coleslaw with red and white cabbage, carrots, radishes, fennel, chervil and parsley. Instead of mayonnaise, he uses yoghurt, olive...
Thanks to Joe Duffy and his LIVELINE team for all the exposure over the last two weeks in relation to CF services in Ireland, and the plight of people with Cystic Fibrosis, and their families.
I attach the link again to his website. You can download and listen to the five liveline shows, that dealt with CF (5 shows!), and I also attach a link to the liveline website - which lists other very good CF causes.
Over the five liveline radio shows - Joe has rasied the awareness of CF. He spoke to sufferers of Cystic Fibrosis, parents and siblings about the appalling lack of services in Ireland.
Dates: 10 January, 11 January, 14th January, 15th January & 16th January 2008
Eithne Donnellan Irish TimesThe possibility of placing a prefabricated structure with single rooms for cystic fibrosis patients on the site of Dublin's St Vincent's hospital is currently being discussed with Minister for Health Mary Harney. Godfrey Fletcher, the chief executive of the Cystic Fibrosis Association of Ireland, said yesterday that he believed if the will was there such a structure with between 15 and 20 single rooms could be on the hospital site within months. "If necessary we will pay for it," he said. It would be an interim solution to the current situation where a lack of single rooms at the hospital puts vulnerable CF patients at risk of picking up infections from other patients. He said the association was unhappy that the current interim solution put forward by HSE chief executive Prof Brendan Drumm would take up to a year to be put in place. It would involve vacating an existing ward in the hospital and converting it into about 11 single rooms for the use of CF patients. "There are a lot of angry, desperate and frustrated CF patients and their families and we are not prepared to wait for an interim solution that... [More]
Posted at: 08:29 AM | 0 Comments | Add Comment | Permalink
Cystic fibrosis unit gets green light
January 23, 2008
Irish IndependentLONG-SUFFERING cystic fibrosis (CF) patients got some good news yesterday when planners gave a new 120-bed isolation unit at St Vincent's Hospital in Dublin the green light. The Irish Independent has learned that planning permission has been granted for the new unit at St Vincent's Hospital where the national centre for CF patients will be based. The new building will take two years to complete after the first sod is turned. It will also contain a new liver transplant unit as well as facilities for other patients who need individual rooms. Health Service Executive chief Brendan Drumm said last week he hoped the new CF centre at St Vincent's would open in late 2010 14 years after plans were first drawn up. Devastating It comes afterdevastating criticism of CF services by a British consultant published in February 1995 that described the lack of facilities as "dangerous". The Pollock Report said: "In many locations physical resources, particularly in Dublin, fall well below accepted standards. St Vincent's is particularly poor." It added: "The lack of segregation and isolation facilities, both for out-patients and in-patients, is dangerous, creating significant risks of cross infection with viulent organisms... [More]
Posted at: 07:30 AM | 0 Comments | Add Comment | Permalink
Living with cystic fibrosis. – Letter to the Editor
January 23, 2008
Irish TimesMadam, - While I commend most of your Editorial on cystic fibrosis (January 16th) I have to object to your comments about "a backstairs political deal". I have always been open and accountable on my agreement with the Taoiseach. I have spoken many times since in the Dáil on the content which includes services for cystic fibrosis patients. I will continue to listen to the patients, parents and the professionals on this urgent matter. I will also use my clout. I have to ensure that they get quality services as a right. - Yours, etc, FINIAN McGRATH TD (Independent, Dublin North Central), Dáil Éireann, Dublin 2.
Posted at: 07:26 AM | 0 Comments | Add Comment | Permalink
Living with cystic fibrosis. – Letter to editor
January 22, 2008
Irish TimesMadam, - The capital cost of funding, properly, the required seven dedicated centres to provide care and treatment to young adults with cystic fibrosis, based on a six, single en-suite rooms, would amount to an estimated €35 million. The allied cost to the Exchequer to adequately staff each of these units would be about €1.5 million a year. This expenditure would make fiscal sense, given that the creation of these dedicated CF units would free up A&E trolley spaces (where CF patients are treated currently) and reduce the pressure on beds in wards. Surely this is a win-win situation. So why isn't it happening? And why are young people with this debilitating and life-shortening illness compelled to take to the national airwaves and newspapers to highlight their plight? On Morning Ireland last week Independent TD Finian McGrath told about the €2.5 million he secured for CF outpatient services at BeaumontHospital, as part of his deal with Taoiseach Bertie Ahern to support the Government. This spending for his constituency is welcome. But it falls well short of the money needed to deal with the issue nationally. Could Mr McGrath's negotiation skills not have extended to a... [More]
Posted at: 10:25 PM | 0 Comments | Add Comment | Permalink
