Cystic Fibrosis update

Godfrey Fletcher of the Cystic Fibrosis Association of Ireland provided an update regarding the provision of emergency isolation units for CF suffers (Liveline, 8th Feb).

The organisation hopes to present proposals for a ten bed temporary portacabin to St. Vincent’s hospital in about two weeks. Plans are also in the pipeline for a ten bed unit in Beaumont hospital and another ten bed unit in Galway.

The HSE has committed to six single on suite bed units and are considering another 17. Mr. Fletcher warns, however, that the HSE has not confirmed that all these units will be ring fenced for CF patients.

Jennifer Tormey, one of the young CF patients who first brought their disgraceful plight to public attention said she would believe it when she saw action rather than words. Nobody can blame her untrusting attitude after years of broken promises by the HSE. She is also mourning the death of a close friend, 15 year old Ian Riley, who died last week from CF.

The letter below was taken from the Liveline website and speaks for itself.

Bernadette spoke to us on Tuesday 15th January 2008. Below is a transcript of the email she originally sent to Liveline.

Dear Joe,

First and foremost I want to thank you so much for the coverage you have given CF patients over the last few days. Unfortunately, after years of listening to the same thing over and over again, I have absolutely no faith in the HSE or in Mary Harney and am not holding out any hope that anything will be done.

I am 24 years old and have cystic fibrosis. I am currently an inpatient in St Vincent’s Hospital in Dublin for a severe chest infection. I have been here since the 2 January and there has been no significant improvement in my condition. I have been informed that my disease is progressing and I won’t be able to regain the level of health that I had 6-12 months ago.

Transplant has also been put on the agenda. I can’t put into words how absolutely devastated I am-as a CF patient you make the best of everything and try to ignore the statistics that are staring you in the face, but when it is spelled out for you it is truly awful. Every day is a massive effort now as I struggle to fight and maintain the exhaustive regime of treatment I must undergo which involves oral, nebulised and intravenous antibiotics, physiotherapy, nutritional supplements (and possibly having a feeding tube inserted) and oxygen.

The constant stream of anger and indignation in the media must start to sound confusing to the everyday person as there is such a massive web of problems for us within the services and facilities we are offered. However I just wanted to add my piece and get it off my chest. Here are a few points that I feel are important.

En-suite rooms are NOT A LUXURY, they are a basic need.

Firstly, as has been pointed out lots of times in the last few days, going into the current mixed and cramped conditions in Vincent’s is extremely dangerous for CF patients. We are at a low with infection and are open to any bugs flying around. These bugs can spiral out of control and could kill us. That is a fact. It is not as if we are looking for some kind of luxury-we are just looking for the basic and necessary treatment for cystic fibrosis which is recognised as international best practice. We NEED isolation units with en-suites and we need them now.

Intensely depressing scenario regarding conditions

It is hard to describe how truly soul destroying it is to be put in a ward with 5 patients who are elderly and often senile and incontinent. I make a concerted effort each day to be strong and positive and to fight my illness, but just imagine trying to maintain this frame of mind when you are stuck in your bed because of o2xygen dependency while all around people are calling out for people who aren’t there, and are regularly soiling their beds or using a bedpan, making the smell in the ward unbearable. It is so horribly depressing.

May I also point out that the ward is where the meals are served. Would you eat your dinner in a public toilet? Because that is basically what I am expected to do EVERY DAY. Sometimes all I want is a bit of peace and quiet and maybe to curl up in a comfortable place on my own. Even this simple desire is not possible in here. Each time someone dies in your room you are forcibly confronted with the reality that someday this could be you. What did I do to deserve this? Do I not have the right to be protected from this?

Mary Harney’s private hospital “solution” and staffing levels.

Although all the coverage has been about the lack of facilities, it is important to note that the staffing levels are also dangerously inadequate. If you refer to the report on CF services in Ireland conducted by Dr. Ron Pollock this is stated quite clearly. However whenever the issue of cystic fibrosis is raised with Mary Harney, she tells of how funding has been allocated for new staff. While some funding has been allocated and there are now two consultants in St Vincent’s, all the consultants in the world won’t be able to get me a bed when I need it if it is not available, and they can’t magic isolation units out of thin air. If the problem is to be tackled extra staff alone will not alleviate our situation.

Also Mary Harney’s idea of freeing up public beds by building private hospitals does not help CF patients at all. While it MAY mean a shorter stay in A&E, which, I might add, is a ridiculously dangerous situation, it does not address the issue of single isolated room with en-suite, which are VITAL. I want some answers. Why is this allowed to continue? Would Mary Harney like to step into my shoes for a day? I don’t think so.

As I write this, my 6 bed room has finally quietened down, but I’m sure that I can look forward to some noise later on. Here’s hoping for a good nights sleep.

I also want to say that despite all of this mess, the CF team and the staff of St Vincent’s hospital are nothing short of amazing, and I feel so lucky to have them looking after me. I couldn’t ask for any better, each and every one of them is just fantastic.

Yours Sincerely,

Bernadette

Story from RTÉ Radio 1:
http://www.rte.ie/radio1/liveline/1182265.html

Previous posts here and here.

Gift token rip off

Fine Gael TD Leo Varadkar has just published a survey that reveals details of the latest scam in rip off Ireland (Drivetime, 8th Feb).

Apparently, businesses are benefiting by up to €40 million per year by imposing restrictions and charges on gift tokens.

Many tokens expire after a year but some, like Ryanair, expire after just six months.

Others have service charges. Easons will ‘generously’ accept tokens for a year but thereafter imposes a charge of €2 for every month the token remains unused.

Transaction charges, ranging from €2 to €4, are another popular method of extracting ‘free’ money from consumers.

Terms and conditions are not always printed on the cards, a situation that can result in unpleasant surprises and even embarrassment for consumers.

Eurovision Turkeys

Q. What’s the difference between the possible participation of Dustin the Turkey in this year’s Eurovision and last year’s entry penned by John Waters?

A. John Waters was serious, expected to win but came last. Dustin is not a real turkey, accepts his entry is a joke but just might win.

Passport letters

Reply to passport letter in Irish Times.

Madam,

Anthony Sheridan (February 7th) laments that our parliamentarians operate a fast-track system for passport applications to do favours for constituents. But the sad reality is that last year they processed only 6,200 applications in total – an average of 27 passports each or 2.5 per month.

Meanwhile, according to radio advertisements, TV licence inspectors carry out 18,000 raids every month and the Automobile Association rescues 16,000 stranded motorists.

Our parliamentarians are paid huge salaries but in terms of productivity and competitiveness, they fall well behind the standards set in the current National Agreement. The passport rescue service should be handed over to an efficient, rapid-response unit like the AA, or a “you-can’t-fool-us” outfit like the TV inspectors.

Our TDs could then focus on really important tasks such as going to funerals, sending out free Christmas cards and flying off on fact-finding missions to far-flung exotic locations. Parliamentary democracy, Irish-style, deserves no less.

Yours, etc,
JERRY CROWLEY

Best News Broadcaster – In Cashel

The Cashel planning scam was further analysed on Today with Pat Kenny last Wednesday (Previous posts here and here).

Philip Boucher Hayes, head of RTEs Investigative Unit, spoke to Cashel Town Clerk, Seamus Maher about the Council’s threat of using a Compulsory Purchase Order to force the nuns to sell their property cheaply.

Maher: Looking at it from the point of view of the need to acquire land for our various purposes it’s a method that could be used; it wasn’t used in this case

Hayes: But the threat of it was used

Maher: Well, it was mentioned, I suppose in that sense I wouldn’t call it a threat

Hayes: But the letter does say ‘If necessary the council will consider the acquisition of this portion of the property by way of Compulsory Purchase Order’, that’s a threat.

Maher: I suppose, if necessary, it’s a mild one, I mean nobody was putting their backs to the wall

Hayes: Is it a bit of a sharp practice, raising the prospect of CPO and acquiring land, holding on to it for a while, watch it inflate in price and then sell it off at a profit

Maher: I suppose when you’re in negotiation for something you will do your best for the town or the local authority or business or whatever you’re involved in and I wouldn’t have seen it as malpractice or underhand dealing or whatever I mean there’s more things going on really which are much more serious than that

In another development the Council has removed preservation orders on 16 very old trees on the property so that the developer can knock them down.

Belated congratulations to Philip Boucher Hayes, head of RTEs impressive Investigative Unit. Philip won the Best News Broadcaster of the Year last November.

Tammany Hall passports – Update

I phoned the Passports Office today to enquire about an email I had sent some days ago in relation to the special passport scheme operated by TDs.

A very professional lady accepted my point that perhaps details of the service should be published on the Passports Office website so that all citizens can avail of the service. She also assured me that a reply to my email was forthcoming.

I’m still waiting for word from David Stanton on those Dail questions.

A developer friendly administration

The mafia like operations of management companies continues to cause grief for residents of estates and apartments (See here for analysis).

On last Tuesday’s Liveline (58th min) three residents of an apartment complex told their stories. Here’s a summary.

Received a bill for €2,037, last years bill was €1,400.

Reason for increase – Unoccupied apartments owned by the developer and Dublin City Council were not bringing in funds so the residents had to make up the shortfall. The developers are holding onto the apartments until the property market improves.

The board of directors of the management company is made up of the developers.

When the resident questioned the bill it was admitted an error had been made and the bill was reduced to €1,800.

When the resident contacted Liveline the bill was further reduced to €1,550, a figure that had originally been agreed between the company and the resident.

The residents own the properties and are paying massive mortgages but have little or no control or rights in how the management companies operate.

The management companies are totally unregulated.

The Government has been promising for years that they will enact legislation to regulate these people.

This government is a developer friendly administration.

Tammany Hall passport service

The following letter published here and here.

The controversy surrounding the help given by Bertie Ahern to businessman Norman Turner in obtaining an Irish passport has revealed the existence of a separate passport service operated by TDs from Dail Eireann for the benefit of their constituents.

I understand the system operates as follows. TDs collect passport documents from constituents and deposit them in a drop box at the Enquiries Desk of the Dail. They are then collected by courier and taken to the Passport Office where they are processed at a specially designated desk. A number of civil servants are on call to deal with any problems or questions that may arise in relation to these ‘special’ passport applications. When processed, the passports are collected by the TDs and personally delivered to the favoured constituents. 6,200 such applications were processed last year.

There is no justification whatsoever for this ‘unofficial’ service. The official Passport Office already provides a very efficient service capable of dealing with all eventualities.

In addition to normal service the office operates an express service that guarantees a passport within ten working days. There is also an emergency service whereby passports can be provided in two or three days.

The only possible reason for the existence of this expensive and unnecessary service is to provide TDs with a means of granting special favours for their constituents.

This Tammany Hall operation should be discontinued immediately or alternatively all citizens should be given access to the service with full details published on the Passports Office website.

Yours etc.
Anthony Sheridan

Purpose now clearly identified

I see planning permission has been granted for a hotel on land formerly owned by the Presentation Sisters in Cashel. The decision is not unexpected as the property is very valuable and there’s lots of money to be made. Here’s what I wrote about the matter in February last year.

The latest planning scam was discussed on the Pat Kenny Show yesterday morning. A prime piece of property owned by nuns in the centre of Cashel was to be bought by the local council who claimed they wanted to develop the property as a park for the people of the town.

The Council, however, was dragging its heels so the nuns found another buyer. The Council responded by threatening them with a Compulsory Purchase Order and forced them to sell at a deflated price.

Once the deal was done the Council lost no time in rezoning the property and selling it on to a developer who plans to build a hotel on the land. In the process, the Council made a tidy little profit of €1.2 million from the deal.

The people of Cashel are very angry but what can they do? Well, nothing really, except complain and protest. Oh, they can also object to the planning permission that has already been submitted by the developer.

But who makes the decision on this planning application? Why, it’s the very same Council who lied to the nuns, pressurised them into selling at a greatly reduced rate and rezoned the property to substantially increase its value. I wonder what their decision will be.

The report also includes the best example of official gobbledygook that I’ve heard in a long time. When a spokesman for the Council was questioned on the change of use for the property he responded:

“Well, the Council at the time wanted to buy the land for, you know, specific purposes which weren’t clearly identified.”

Passport questions

I spoke at length today with Fine Gael TD, David Stanton regarding the ‘special’ passport service operated by TDs from Dail Eireann (See here). He has agreed to table a number of Dail questions on the issue such as;

Why does the scheme exist?

How many passports have been issued by TDs in the last 12 months/2 years?

How many civil servants are working in the Passport Office on the service?

Is there a cost associated with the service?

Has the Minister any intention of discontinuing the service?