OPINION:The new CF bed block is now 100 beds, not 120, and just 20 are inpatient beds, not 34, writes ORLA TINSLEY
THE NEWS there are to be only 20 inpatient beds in the new now 100-bed ward block for adults with cystic fibrosis at St Vincent’s hospital in Dublin is heartbreaking and infuriating. The number recommended by the CF Medical and Scientific Council is 34. It has always been 34.
I have said the sentence: “We need 34 single en suite rooms” hundreds of times over the past three years. Just before the general election I challenged all prospective TDs to come and visit me in hospital. I was slowly losing my mind in a six-bed ward, losing sleep and cleaning up after other people’s urination before using the toilet. I tweeted and blogged my requests out of frustration and the message spread.
The first person to call was Eamon Gilmore’s secretary. She said Eamon wanted to come in to me to see the facilities I was forced to stay in, but the only problem was he had a cold and didn’t want to give me anything. She said not to tell anyone else he had a cold because it being an election and all that.
It didn’t make sense.
I said, not to worry, I wouldn’t hug him and would wear a mask and keep distance while talking to him. She then said he was extremely busy canvassing. He would call me tomorrow.
He didn’t call.
James Reilly did call, though. Well, he called in without actually calling first. I was on my way to physiotherapy exercise and told him he’d have to wait half an hour. Sometimes I think people assume hospital is a holiday where you lie around all day. He agreed to wait and when I called him later he was chatting to another CF patient in the cafe.
I sat at the opposite end waiting. His aide took a photo of them together, he went off to wash his hands to prevent cross-infection and sat down with me. He was very nice, but ill informed on some of the needs for CF patients.
He focused intently and like every other time I spoke to him I got a real sense that he was listening. He told me he knew all too well about CF because of his time as a doctor. I told him we needed some sort of solution between now and the beginning of March 2012 – when the new unit was to open – for the patients who were in Vincent’s who could not access one of the eight single rooms.
I was now on my fifth night without proper sleep due to the noise in the room I was in. The ward was pretty clean, but if it’s not en suite it’s not good enough.
I told him No, I didn’t want a photo taken.
James Reilly had called me before – in October 2010, late at night. It was just before the late-night emergency debate was held with then minister for health, Mary Harney, present. It was after a ferocious spate of campaigning by so many people with CF.
He asked me how I was and could I describe the situation I was in. At that stage I was in a single en suite room, but as most times, it had been a rough visit until then. He sounded genuinely concerned and when he emotively relayed my story to the Dáil that night I was only mildly mortified to be used as an example.
This guy might get us there, I thought. Because he had the background knowledge and when he talked about CF, he didn’t seem to be spoofing.
On March 22nd, my birthday, I got a ferry home from England. I had been staying in a room Judy Garland used to stay in and I randomly coughed up a significant amount of blood.
We took the ferry instead of flying and I waited at home for a bed in Vincent’s. It was the same day that, in response to a question from TD Finian McGrath asking if the now Minister for Health James Reilly supported the “proposed dedicated 34-bed [CF] unit”, Dr Reilly said he was “wholly committed”. That day Enda Kenny also said: “I support the proper provision of services for cystic fibrosis sufferers.”
On March 24th, still waiting for a bed, I ended up going to an event I was committed to where I had to get my photograph taken with Dr Reilly. The Minister and the chairman of the Health Service Executive, Frank Dolphin, arrived and treated me like an old pal.
The Minister asked how I was. I told him I was waiting for a bed after coming back from holidays after coughing up blood. His face looked pained for me. The organiser remarked afterwards how, although I was only meant to be in one photograph with them, they pulled me into many.
Frank Dolphin told a woman there how great I was and asked what else needed to be done for CF. He was committed, he said. I told him that we were waiting for our unit and hoping to get our recommended 34 beds ring-fenced. That was our biggest problem. I mentioned the major deficits in the transplant system in Ireland and people were dying waiting. He listened intently.
I went into hospital the next day and came out at the end of last week. We had requested to interview James Reilly for last Wednesday's Prime Timeprogramme six days before it was to be aired. The interview, for a special programme on CF care in Ireland which I was researching and reporting on, could be a pre-record, or he could go live on the show. I had no problem leaving hospital to go and interview him.
There was also the great news that the Taoiseach would still be speaking at the cystic fibrosis conference. He had agreed prior to his new occupation, so it would be tremendous for all. Fine Gael had always been so supportive of CF.
And so when last Tuesday came around and I knew there would be no interview for the Prime Time programme, my heart sank. Something felt so wrong about it. When the press statement came in at about 7pm, two hours before the programme was to air, I despaired.
Buried deep in the bulked-up statement, well over 1,000 words, was the information that the bed block was now 100 beds, not 120 and, most importantly, that just 20 inpatient beds (the equivalent of one ward) was dedicated to CF, and 10 outpatient beds.
There has also been talk of Vincent’s having control over the flexibility of beds for CF patients, when inpatient numbers go down. A messy and convoluted notion. The scenario reminded me of the time in 2009 when I got a call to say deeply hidden in an Oireachtas report the previous government had postponed the building of the new unit.
I meant what I said on Prime Time, I can't actually do this for the rest of my life. I can't die some day with my last words being "facilities, transplants and ministers".
The level of shocking disregard for CF needs, when there was a week in which to slot a half an hour for an on-camera interview that the Minister could not make it to, is palpable.
This Government doesn’t feel very new.
Orla Tinsley is a freelance journalist and campaigner for better cystic fibrosis treatment and care facilities