herald

Sunday 4 December 2016

'We've the highest rate of cystic fibrosis in the world, and the need for funds is as vital as ever'

funding

Crew members from Row-A-Round Ireland including Joey the dog who will be in the boat for certain legs with (L to R) All-Ireland winning Dublin footballer, Cian O'Sullivan & Leinster and Ireland rugby star, Ian Madigan at Bray Harbour, Co. Wicklow during the launch of the Row-A-Round Ireland campaign where rowers will row a two person skiff around the island of Ireland covering 1000 nautical miles in aid of Cystic Fibrosis Ireland (CFI).Over 20 rowers will set off from Bray Harbour on May 30th and will take it in turns to row a two person skiff boat around the island of Ireland, covering 1000 nautical miles over the summer months.
Crew members from Row-A-Round Ireland including Joey the dog who will be in the boat for certain legs with (L to R) All-Ireland winning Dublin footballer, Cian O'Sullivan & Leinster and Ireland rugby star, Ian Madigan at Bray Harbour, Co. Wicklow during the launch of the Row-A-Round Ireland campaign where rowers will row a two person skiff around the island of Ireland covering 1000 nautical miles in aid of Cystic Fibrosis Ireland (CFI).Over 20 rowers will set off from Bray Harbour on May 30th and will take it in turns to row a two person skiff boat around the island of Ireland, covering 1000 nautical miles over the summer months.
The new proposed National Children's Hospital
National Children's Hospital design
Philip Watts, CEO of Cystic Fibrosis Ireland

The delay in opening the new children's hospital impacts on all children and those with cystic fibrosis (CF) in particular, according to a leading expert.

Philip Watt, the CEO of Cystic Fibrosis Ireland, said that Tallaght, Crumlin and Temple Street hospitals currently prioritise treating children with CF.

"We are effected by the delay in the new paediatric hospital because all those CF beds will be going into the new paediatric hospital in St James's," Mr Watt said.

"Except for some funding that we have provided, the rooms really haven't been upgraded in Temple Street or in Tallaght over the last few years, because the expectation was that the children's hospital would have been built.

"We were lucky that we built four in-patient rooms in Crumlin and that was open four years ago."

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It was fortunate that the foresight was there that the project was probably going to be delayed and those rooms would be needed, Mr Watt said.

"So we have enough paediatric rooms in Dublin. But they are not of a standard that should be there really, and the delay in the hospital is a problem," he said.

The National Children's Hospital has yet to get planning permission. An application will be made in June in the hope of opening its doors in 2019.

The long-delayed project was originally supposed to be ready by 2016. The project was moved from the Mater to St James's after planning permission was refused at the Mater.

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When it comes to adult facilities, Mr Watt said that in Beaumont Hospital, there are only seven in-patient CF beds and they need 20.

"The board of the hospital has recently agreed to put that in their plans which is great. But what we need now is the commitment for funding from the HSE and Government," Mr Watt said.

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"Those beds are badly needed. One of the reasons is that people with CF are living longer now because of better medications and better care.

"There are 150 to 160 adults attending Beaumont and that is set to increase over the years as the survival rates of our patients increases. With CF they get exacerbations, that is a worsening of their condition. That can happen quite suddenly and quite dramatically," he added.

"They need to get into a hospital for a course of intravenous antibiotic treatments and they are usually in for three or four weeks for that treatment.

2015-05-05_new_9229607_I3.JPG
National Children's Hospital design

"So it is absolutely vital that we have the rooms for people to come in when they need that care."

CF is a genetically inherited disease that primarily affects the lungs and the digestive system. Ireland has the highest incidence of the disease in the world - approximately one in 19 Irish people are said to carry one copy of the altered gene that causes CF.

However, there have been very positive developments in the treatment of the disease.

"It is a time of hope I would say because there are new therapies which have come on board over the last two years in particular which are beginning to address the underlying cause of CF, and in particular there is a wonderful new drug Kalydeco.

"It only impacts on 100 of the 1,200 patients that we have in the country," Mr Watts said.

"This drug has the potential to add decades to the lives of people who benefit from it. We will see remarkable stories from those who are on this drug.

"We are hoping in the next two to three years that we will see similar drugs being developed for more common CF gene mutations in Ireland, so it is a time of hope but we still badly need those facilities," he said.

Meanwhile, the number of CF double lung transplants increased to 20 last year from nine the year before which was a record year. The vital operations are being done at the Mater Hospital.

"There have been great strides in this area because there has been increased investment in lung transplantation over the last couple of years," Mr Watt said.

The Government still haven't brought in "soft opt-out" for donor consent, he added, which is when people are presumed to want to donate an organ when they die, unless they opt out.

He favours this approach, and he wants the Government to bring it in before the general election.

"You can get a donor card. How many people have got them and lost them?" he said.

donate

What's more important is if people tell their next-of-kin that they want to donate their organs, he believes.

Meanwhile, the society has put in €8.5m into improving CF centres over the last four years, which has been a "remarkable effort" around the country.

It also provides grants of €170,000 to its members each year, including towards the costs of fertility treatment.

"A side effect of CF is a lack of fertility. We funded 30 IVF cycles last year. An IVF cycle costs €5,000. All we can provide is around a €2,000 grant towards that," Mr Watt said.

"The most wonderful cards we ever receive are ones from patients who have conceived. We would love to increase that budget."

Beaumont Hospital said over 100 patients regularly attend.

"The board has identified a need to expand its services for such patients and is working closely with the HSE, the Department of Health, CF Ireland and Hopesource to develop plans for new in-patient facilities for CF patients," a spokesperson said.

Separately, a spokesperson for the new children's hospital said the enhanced facilities there will meet the unique needs of children with CF.

"The use of single rooms throughout will be particularly beneficial for children with CF, given their unique needs, and specific design requirements for CF patients have been taken into account in the design."

To make a donation visit www.cfireland.ie

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