The torment is less talked about - but it hasn't disappeared
As far as national scandals go, the debate over proper facilities for people with Cystic Fibrosis (CF) has been long, complex and in full public glare for almost a decade.
So it's unfortunate I have to start my first column with it.
Last week, Minister for State Kathleen Lynch announced an 'amicable conclusion' had been reached in the row between Cork University Hospital (CUH) and charity Build4Life over €2.3m the CF charity raised for adult inpatient beds at the hospital. Amicable would be putting it lightly.
Joe Browne, whose son has CF, set up the charity in 2007 after he watched a young woman he knew die from the same disease. Browne vowed to make hospitals safer for adults with CF and in turn safeguard his own sons future.
CF affects the lungs, digestive system, the liver, the sinuses and it affects each person differently. It's complicated and it's the most common genetic illness in Ireland. Proper facilities would mean no more exposure to dangerous infections. It would mean living longer.
In seven years Build4Life, and it's generous public supporters, have raised roughly €4m for CF facilities. The charity agreed to fund 20 adult beds Cork; ten ensuite for CF and ten for the respiratory consultants other patients.
The HSE funded some €300,000 to prepare the space and upon tearing down the old hospital ward making way for the new, they discovered the space would not fit 10 adequate cubicles. The new agreement became eight cubicles for CF and the rest given to the hospital as respiratory beds. It was a trade off worth the €2.3m of charity money to guarantee life saving treatment.
Build4Life continuously asked for a commitment on the amount of beds ring-fenced for CF, knowing this to be a problem when the National Referral Centre at Vincents was constructed, but they got no clarification.
The crunch came in December when it was time to hand over 1.8 million of funds to employ a contractor. CUH suddenly refused to commit to the 8 beds. Instead they committed to 0 and offered 'priority access' meaning nothing was guaranteed.
The charity stood it's ground and withheld the money. After seven years of hard work no reasonable person could consciously hand over millions in this circumstance. Then the Cystic Fibrosis Association of Ireland waded into the debate. They cited St.Vincent's Hospital as a positive example where 'priority access' worked well.
The CFI then, remembering they were speaking for some 340 people and their families attending the Dublin hospital, sent a survey around asking for satisfaction ratings back up their claim. It was rotated on email and Facebook with one week given to respond.
The survey, reported in the Irish Medical News, said 90pc of people polled were happy with services. Of the 340 people who attend the hospital, only 39 responded to the survey. So the response was 90pc of those 39 people. Most people I spoke to were frustrated by this representation.
Because the torment is lessened it is less talked about, but it has not fully disappeared. Outside the 20 designated rooms there is limited or no exercise equipment which is vital to recovery.
Staff are not trained in CF. Those that are trained are spread thinly and overworked. Beds can be twenty minutes away from the designated team. One woman told me recently she spent two weeks without a working shower despite constantly reporting it.
By following Vincents example CUH is creating a web of complications like these for patients now and generations to come. In the final settlement, the 'amicable solution', as stands, is 4 adult single en-suite beds dedicated with 1 extra that can be made available.
The solution speaks volumes of our dysfunctional health service. Under the agreement if the hospital at any time fails to provide beds when needed they must give double what was promised. In three years time the adult population with CF attending Cork will have risen to 200.
The struggle of this generation is not one that needs to be placed on the shoulders of the next. Seven years and 2.3 million later should have been enough.