Monday 22 April 2019

My daughter could pay the price for political cowardice

I lost a bet with my daughter: last year she wagered a tenner that the new unit for Cystic Fibrosis patients would not be open in 2010; I doubled the stake and told her it would. She has not yet collected the €20 but her judgment of politicians is obviously keener than mine.

Faela, who has CF, is 21 years old; I have been covering politics for nearly 23 years, since 1987. But her antennae for tracking political opportunism was honed over a short life exposed to self-serving civic duplicity.

The outgoing Fianna Fail-led government refused to go ahead with the unit at the last election in June 2007.

And after they regained office, the project was fast-tracked following a questionable political trade for an independent TD's vote.

The decision was rooted in political strategy and had nothing to do with the life-and-death medical needs of CF patients.

On polling day, June 18 2007, I wrote in this newspaper of how the outgoing Fianna Fail-PD government refused to commit to building the new CF unit.

When Bertie Ahern wooed Finian McGrath, I met the independent TD and told him that the Republic had the highest incidence of CF in the world and that hospital conditions sufferers endured were the most primitive in Europe.

I explained to Mr McGrath how CF patients in the North, where they have individual rooms in hospital, live significantly longer.

The independent TD for Dublin North Central insisted on including a 34-bed CF in-patient unit as part of his deal. The same Government that had shown such studied indifference weeks before, signed off on the agreement.

Last year, an upsurge in public anger arose after Joe Duffy exposed the shocking conditions suffered by CF patients on RTE's 'Liveline' and the rage culminated in a 'Late Late Show' debate.

Then, halleluljah: the same Government trumpeted its support for the new CF unit with all the zeal of converts and we reckoned, some of us more reluctant than others, that a repentant sinner deserves forgiveness.

This was the same Government that had ignored overwhelming medical evidence and was indifferent to the devastating results of their indifference -- but they changed their collective mind for a single vote.

I began to get uneasy, though, last autumn, after Finian McGrath withdrew his support for the Government. If a reluctant Government only bought into the CF unit to get a single TD's vote, why would they commit funds for the same unit when there was nothing in it for them?

That, of course, is a deeply cynical view of the Government's motives, but it is difficult to believe that they could not have found the money for the CF unit if it had been one of their pet projects.

The CF cause has never been in favour with this, or indeed any Irish Government, but delivering the disappointment to the families of the sufferers presented a tricky public relations problem. Advisers earn six-figure salaries for reminding politicians that there are good days for announcing bad news; and, they reckon, the CF squall is likely to blow out in the aftermath of Tuesday's mini-Budget.

The politicians left it to the HSE to make the announcement.

If CF gets long-fingered to 2011, it will be pushed back again: CF has no friends in government, no champions in cabinet to fight their corner.

They even short-changed the CF patients in St Vincent's with their interim measure: after agreeing to provide 14 en-suite rooms, only eight became operational.

And on any day there are at least 25 patients in the wards needing individual accommodation.

Hospital conditions for CF patients in Ireland are acknowledged as the worst in Europe, although the medical treatment by the dedicated CF teams is on a par with the best in the world.

And because of the danger my daughter and many of her friends with CF will not go into hospital even when they are very ill; they fear contracting a lethal infection from other patients.

Last year, I visited the CF unit in Belfast and met the medical team there and saw the facilities that allow their patients to live longer than those in the Republic.

If my daughter and the other young CF sufferers here had access to similar hospital accommodation as is available in Belfast, or most other European countries, they would also live significantly longer.

This newspaper revealed last year that 39 CF patients died at an average age of 22 or 23 in the Republic while the median age for death of a CF patient in Northern Ireland was in the late 30s.

In other words, a child born with CF in the North could expect to live for 14 or 15 years longer than a child born with CF in the Republic.

It is very, very difficult to understand why successive governments have remained indifferent to the CF cause.

But when a single parliamentary vote is more persuasive than irrefutable medical evidence, the politicians have answered the question themselves.

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