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'Nobody seems to care': Why some children face years of waiting for 'early intervention'

A family’s address can decide whether their children get quick access to services like speech therapy – or flounder on waiting lists.

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WHEN NICOLA MOORE got a call from the local disability service in Tallaght about scheduling her son’s first therapy sessions, her initial reaction was that there had been a mistake.

The nine-year-old had struggled socially with perennially anxiety, and had recently been earmarked for early intervention after being assessed as having high-functioning autism.

“The woman on the phone said the wait for the service was 44 months. I said, ‘Can you repeat that?’ I couldn’t believe it. He’s in third class now, so this ‘early intervention’ team won’t see him until he’s in secondary school,” Moore said.

He won’t leave my side, he’s so anxious. I can’t wait 44 months, there’s no chance. I can’t just throw him into secondary school in a few years and let him go.”

The nine-year-old is just one of hundreds of children nationwide placed on sometimes years-long HSE waiting lists to receive vital early assessments or therapy for their disabilities.

Frustratingly for parents, families living just a few suburbs apart can expect vastly different outcomes due to the accident of their geography, TheJournal.ie’s new investigative journalism platform Noteworthy has found.

In some areas, children face the dual hurdles of long waiting lists for initial assessments – the gateway for most to receiving State-funded therapy – and further delays once they join the queue for stretched services.

In practice, that can mean waiting more than two years between diagnosis and so-called early intervention for those unable to afford private treatment, which typically costs €100 or more for a one-hour speech and language therapy session.

For children in their most formative years, that delay can mean the difference between success or failure at school, with knock-on effects for their ability to work and enjoy fully functioning, social lives as adults.

In this investigation, we have focussed on the provision of speech and language therapy as an estimated four-fifths of all children assessed under the Disability Act require the treatment.

A 2014 review of Ireland’s approaches to language development noted that it was “crucial to all aspects of children’s lives and one of the best predictors of educational achievement”, which meant that early intervention and treatment was critical.

However similar problems affect the delivery of other children’s disability services, such as occupational therapy and physiotherapy, in many parts of Ireland.

Those on long waiting lists are often the most complex and difficult-to-treat cases, for which children are waiting for the attention of multiple specialists.

shutterstock_596748176 Shutterstock / Africa Studio Shutterstock / Africa Studio / Africa Studio

An accident of geography

Since 2016, bringing down the numbers of children on long waiting lists for speech and language therapy has been the target of focussed investment from the HSE.

That included a target that no child should wait longer than a year for speech and language therapy. Some €4 million in extra funding was earmarked to recruit an extra 83 staff to help reduce backlogs.

However, while the overall numbers of children waiting for therapy has been reduced, the extra money has had little impact on long-term waiting lists. 

In September 2016 there were 762 children in the year-plus ‘long waiters’ category. While the number had dropped to 487 a year later, by the same month in 2018 it had increased again to 694 and continued to climb.

Many of the problems were concentrated in just three of the HSE’s nine designated ‘community health organisations’ (CHOs).

Official data shows that more than half of all patients nationwide – the vast majority of whom are children – on waiting lists of a year or more for speech and language assessment were in just one of the regions, covering Dublin city’s south and west, and Kildare.

At the end of January, there were 406 people on the waiting list for over a year in the area, while 136 out of that cohort had been waiting more than two years for an initial assessment.

By comparison, in the neighbouring health area, covering Dublin’s south-east, Dún Laoghaire and Wicklow, there were only 17 people waiting more than a year for assessment.

At least one patient in each of Cork’s south city and Dublin’s west had been waiting more than five years for a speech and language therapy assessment as of January last year. 

When it comes to receiving therapy following a diagnosis, the picture was little better for many parents in Dublin’s west.

However the longest waiting list for initial speech and language treatment was in the CHO region covering much of southeast Ireland, including Carlow, Kilkenny, Wexford, Waterford and south Tipperary.

Some 274 children, more than one-third of the national total, had been waiting longer than a year for their first appointment within the region.

In the health region covering Cork and Kerry, there were 187 children on waiting lists for a year or longer. The three CHO areas together accounted for nearly 93% of the 741 children on long waiting lists for speech and language therapists nationwide in January.

20190418_Waiting_Lists Statista / HSE Statista / HSE / HSE

Click here for a larger version

Within Cork city alone, there were 78 children who had been waiting more than two years for initial therapy.

The rising figures come despite the HSE employing significantly more speech and language therapists. There were the equivalent of 929 full-time of the staff employed in community health organisations late last year, up from 868 in December 2016.

Vickie Kirkpatrick, who chairs the Irish Association of Speech and Language Therapists (IASLT), said the HSE’s waiting list-reduction initiatives were “like a finger in the dyke” trying to fix problems that stemmed from a lack of proper national planning to react to changing demand.

“By the time you get trained staff in you might create a dent, but that just creates a problem somewhere else,” she said.

Huge regional variations in the numbers of therapists available per child with special needs were identified several years ago, while since then the numbers of children diagnosed with conditions like autism have also risen significantly.

The waiting game

A ream of internal documents from HSE and Department of Health staff, obtained by Noteworthy, highlight recurring themes – largely stemming from poor management – that are helping to drive the stubbornly high waiting list numbers in problem areas.

Therapists often complained about having poor resources in the regions where they were most needed, issues that were compounded by slow recruitment processes and the lack of replacement staff when members of the largely female workforce went on maternity leave.

Clinical staff were also reportedly tied up doing paperwork that could be performed by non-specialist staff whose administrative roles were allowed to become vacant.

There were also concerns that therapists were being pushed into unrealistic workloads, which had an impact on their ability to deliver proper services to children. 

Prized appointment slots were also being taken up by people who failed to turn up for the sessions, however no systematic way of cutting down on the no-shows had been introduced.

One document noted that recruitment and retention remained “challenging” in the sector. Only 69 out of the extra 83 speech and language therapy posts funded through the €4 million investment were filled once maternity and parental leave were taken into consideration, it added.

An analysis from the HSE’s national office from April last year highlighted a string of ongoing problems in the Dublin west, south and Kildare region when it came to long waiting lists.

They included the need to prioritise children requiring a formal assessment at the expense of less-urgent cases.

Because of capacity problems within various parts of the assessments process, some children were facing waits in the area of up to five or six years, the analysis noted.

The HSE has faced a string of court cases from families suing over delays in children receiving assessments, which under the Disability Act should be completed within six months of an application.

Internal records from the region covering Ireland’s southeast also highlight ongoing problems with recruitment and management of the local operation.

A report on Wexford speech and language services from January noted that it was currently taking the HSE’s national recruitment service 40 weeks to fill vacancies.

Wexford An internal HSE document Noteworthy Noteworthy

Around one-fifth of therapists’ time was being spent on administrative tasks, the report added. Hiring dedicated staff to perform those duties would help free up clinicians for appointments.

It said that nearly 20% of appointments weren’t attended due to no-shows or cancellations, effectively meaning two slots were taken up for one session after allowing for rescheduled appointments.

An increase in administrative staff could allow for reminders to be sent to parents, while the report also recommended the implementation of an IT system that could send text reminders.

A briefing document from December on long waiting lists in Waterford noted that therapists were “working to their full and safe capacity” and it was not possible to address those waiting for treatment without the replacement of maternity leave staff.

It said that the national targets for daily appointment numbers were “not safe” and the author, a clinical manager of the service, “cannot ask staff to achieve this target”.

Senior staff on maternity leave were typically replaced by “agency staff with little experience” who themselves needed supervision from senior therapists, further reducing the number of appointments carried out, the document added.

Separate letters from an HSE manager said that new speech and language therapy recruits were expected to be able to perform seven therapy appointments per day, however in some of the areas with the longest waiting lists the average figure was fewer than three per day.

The letters noted that the expectation may not be realistic for therapists in social care providers, whose patients typically had more complex needs.

Many of the complaints had already been identified in an earlier 2017 review of speech and language and other therapy services, which added that poor IT infrastructure was leading to reporting errors and limiting the time available to therapists for clinical appointments.

In a statement, a spokeswoman for the HSE said it was “fully cognisant” of the stress that waiting for therapy services caused for families, and improving waiting times was one of its key priorities as part of an overhaul of children’s speech and language therapy services.

The HSE’s new programme aimed for “a national equitable approach in service provision for all children based on their individual need and regardless of their disability, where they live or where they go to school”, she added.

The HSE’s national plan for 2019 included funding for another 100 new therapy posts by the end of the year, although it was accepted that more resources were needed, she said.

A report last year predicted another 400 therapy posts were needed to meet demand for children’s services.

All current HSE-funded children’s disability services were being overhauled to create new, interdisciplinary teams around the country, but there appears to have been little progress in the rollout of the new networks in the past three years.

90111117_90111117 Eamonn Farrell / RollingNews.ie Eamonn Farrell / RollingNews.ie / RollingNews.ie

The impact 

Both the families affected by long waiting lists and staff tasked with delivering services agree that the changes and investment needed to deliver proper services to every part of the country are yet to materialise.

Lorraine Dempsey, from the Special Needs Parents Association, said that prioritising assessments because of the threat of legal action had often come at the expense of children who were waiting for treatment as there was no statutory “right to intervention”.

She added that assessment and treatment should always come “as early as possible” as children were constantly developing and any delays in that development could have significant knock-on effects.

A young child with autism, for example, might act out at home and in school, but those behavioural problems were often caused by their own frustration at their inability to communicate with their peers, parents and teachers, she said.

Parents want to have options in the future, and they want their children to have as much of an opportunity for independent living as possible – and the foundations for that start very early on.”

SNA Health Cuts Protests Lorraine Dempsey Laura Hutton / RollingNews.ie Laura Hutton / RollingNews.ie / RollingNews.ie

Kirkpatrick said the “stop-gap measure of waiting list initiatives” failed to address fix systemic problems with how speech and language therapy was delivered.

“The importance of early intervention in those formative years might translate into more complex issues later – that means more of an impact on schools, or added costs in later years due to mental health issues or academic failings leading to lower employment.” 

Faced with a choice between a harder life for their children and themselves, those parents with the means to afford to pay for treatment are frequently forced to turn to private practitioners.

Breeda De Vries’ son was diagnosed with developmental language disorder after a drawn-out series of tests to understand why he was having difficulty forming words as a toddler.

However it was nearly a year after his assessment before he started receiving public therapy sessions in Lucan, while since then the treatment had been sporadic due to further year-long waits between treatment ‘blocks’.

“He was really frustrated, it was causing behavioural issues because people couldn’t understand him. He was lashing out; the big concern there as well was that he couldn’t go to school,” De Vries said, adding that she felt the only option was to pay for private treatment.

“It has had a huge impact on behaviour and it’s had a huge impact on his confidence – when it’s his turn to read at school, he won’t speak,” she said.

He knows he doesn’t pronounce things properly. Obviously if he had got more help before he went into school it would have been better.”

For Moore in Tallaght, who is a full-time carer for a second, adult son with an intellectual disability, the only option now was to “get the money up somehow” to pay for private therapy for her younger boy.

“I believe that the system is designed to wear you down. You’re at home dealing with children’s needs all the day, how do you have the energy to fight for services as well? Nobody seems to care.”

- With Ken Foxe

Know more about this story or want to share your experiences? Email the author via peter@thejournal.ie or send a message using the secure Threema app, ID: ESUCBYMK

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21 Comments
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    Mute Fintan O'Halloran
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    Aug 12th 2018, 8:35 PM

    I’ve heard it all

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    Mute John Mitten
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    Aug 12th 2018, 8:41 PM

    @Fintan O’Halloran: not much that can actually be added to your comment. Over the last few days the claims have been out of this world. We have a man winning because he was promoted. Then a women because she informed her new employer she was 9weeks pregnant 1 week in to employment and was let go. But the promoted one is the best. I pray these are all satire

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    Mute fintolini
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    Aug 12th 2018, 9:03 PM

    @John Mitten: Most new roles have a probationary period, 6 months and its for both employee and employer to ensure the role fits etc.
    Surely one of the parties could have realised in that time period that something fundamental wasn’t right. A process that encompasses a PIP rarely leads to satisfaction on both sides, perhaps if they looked at the actual cause of the issue, they could have moved him to a more suitable role and allowed another person who was more suitable for the role a chance.

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    Mute Hans Vos
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    Aug 12th 2018, 9:03 PM

    @John Mitten: one month in employment not one week.

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    Mute John Mitten
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    Aug 12th 2018, 9:10 PM

    @Hans Vos: read the article again. It states 1 week.

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    Mute Hans Vos
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    Aug 12th 2018, 9:30 PM

    @John Mitten: yea you’re right. Mea culpa!

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    Mute John Mitten
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    Aug 12th 2018, 9:38 PM

    @Hans Vos: none of these should have got a cent. I really hope courts over rule them.

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    Mute Al Madzer
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    Aug 12th 2018, 9:57 PM

    @John Mitten: I think it’s a recommended payout. It’s not enforceable and usually the complainant has to go to court to attempt to get the money.

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    Mute Bart
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    Aug 13th 2018, 9:08 AM

    @fintolini: ha ha ha, probation is for employee benefit, ha ha ha

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    Mute Gareth Cooney
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    Aug 13th 2018, 11:57 AM

    @John Mitten: plus the lady who sued for reading and responding to emails at home after work she was awarded €6k and appealed for more and won an additional €1.5k

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    Mute Jim
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    Aug 13th 2018, 2:36 PM

    @Fintan O’Halloran: muppet

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    Mute Stephen East
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    Aug 12th 2018, 8:43 PM

    My god…..a legal article we can actually comment on

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    Mute John Mitten
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    Aug 12th 2018, 8:48 PM

    @Stephen East: dreams do come true

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    Mute Shawn O'Ceallaghan
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    Aug 12th 2018, 11:16 PM

    @Stephen East: not really a legal article. Its a recommendation court basically. Bank can refuse to pay and it would mean fun at a civil court level

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    Mute Martin Flood
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    Aug 12th 2018, 9:20 PM

    So he gets rewarded for being thick?

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    Mute G Fitz
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    Aug 12th 2018, 10:52 PM

    @Martin Flood: I don’t think he was thick, maybe lazy?

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    Mute ManUtdMan
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    Aug 12th 2018, 11:22 PM

    @G Fitz:Treated a serious position as a plum job, sacked & still worked out a way of getting paid from a bank. This boy ain’t thick lads.

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    Mute Ciaran O Shea
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    Aug 12th 2018, 8:41 PM

    You can sue for anything in Ireland!!

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    Mute John Smith
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    Aug 12th 2018, 9:21 PM

    I thought this was Waterford Whispers for a moment…

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    Mute ciaran kehoe
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    Aug 12th 2018, 9:47 PM

    Who actually appoints these people who are on these committees making crazy decisions like that one. He gets awarded because is not up to the job & won’t take his training seriously. He would probably also have also won a case if he had not been promoted. Who in their right mind would want to be an employer in this country when no matter what you do employee’s win cases like this. The people making these awards are the ones not up to the job

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    Mute Fat Face 99
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    Aug 12th 2018, 8:43 PM

    ‘His representative said he should have been demoted’

    I’m guessing that would have been worth more than €6600 for him……….

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    Mute Niall
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    Aug 12th 2018, 10:28 PM

    Well, I suppose he did work for a business that got 85billion from the taxpayer because it failed.

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    Mute Terry Cahill
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    Aug 13th 2018, 9:31 AM

    @Niall: I can’t see the name of the Bank anywhere … did I miss it ?

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    Mute Maria
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    Aug 12th 2018, 9:58 PM

    Is it only me but why are their name’s never released? If I was an employer I would want to know the outcome of this case.

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    Mute Martin Flood
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    Aug 12th 2018, 10:12 PM

    @Maria: Exactly. And make sure he’s never promoted, just in case.

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    Mute Patrick O'Farrell
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    Aug 13th 2018, 12:37 AM

    I’d love to know which bank. I spent 15 yrs working with a large national bank and it was there I learned that AEDS (Arse Elbow Differentiation Syndrome) was rampant in management in Irish banks. If you played the game you got promoted but if you dared question you were as welcome as a fart in a spacesuit. Nothing has changed in the Irish banks, they reward incompetence and dishonesty and penalise honesty and engagement.

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    Mute Tracey Coleman
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    Aug 13th 2018, 7:48 PM

    @Patrick O’Farrell: Performance Improvement Plans are used in PTSB.

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    Mute James Noel Bradley
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    Aug 12th 2018, 8:39 PM

    Good for him

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    Mute Pixie McMullen
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    Aug 13th 2018, 12:39 AM

    I’ m just wondering who gave him a job with a significant pay rise, and does he know what he has let himself in for.

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    Mute Jun Stone
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    Aug 13th 2018, 5:59 AM

    @Pixie McMullen: maybe, just maybe the bank were unreasonable and there’s nothing wrong with the guy, after all he has a new job with more money, you wouldn’t know what was at play here.

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    Mute George McCarthy
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    Aug 12th 2018, 8:52 PM

    Why are these payments so low????

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    Mute John Mitten
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    Aug 12th 2018, 8:59 PM

    @George McCarthy: As payments for stupidity go this is high.

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    Mute Gasher
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    Aug 13th 2018, 6:15 AM

    So basically a man applies for a job that he hasn’t got the skills/qualifications for and the sues his employer because HE was incompetent!!!!
    During the interview, I assume there was one, I would imagine he told the interviewers that he was the best thing since sliced bread.
    This country is heading down the drain.
    By the same token Leo could sue the state, saying that he was promoted to the top job by Enda, while Enda knew he was incompetent and hadn’t got the skills to carry out his duties. This would then set a precedent where Simon Harris, Paschal, Eoghan and a few more could sue the state to top up their giant pensions and golden handshakes.

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    Mute James Darby
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    Aug 12th 2018, 10:17 PM

    He’s obviously not so stupid after all, he’s just got over 6 grand for nothing.

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    Mute Rory J Leonard
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    Aug 12th 2018, 11:07 PM

    @James Darby:

    Sounds like this reasonable man quickly determined that the climb up the greasy pole to a more senior management role, and presumably additional pay, was not worth the effort and not all it’s cracked up to be, and decided to slide back down again to a quieter less stressful life. I can see the injustice here!

    He’s right to not let them take the pis.

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    Mute Gareth Cooney
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    Aug 13th 2018, 12:11 PM

    @Rory J Leonard: he’s gone on to fly a plane for Ryanair.

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    Mute Joseph Dempsey
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    Aug 13th 2018, 5:53 AM

    Interesting the Journal permitting comments on this case and yet not permitted on at least 10 other WRC cases over the past few weeks?

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    Mute Dave Slater
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    Aug 12th 2018, 9:57 PM

    The Peter Principle.

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    Mute Seán Kinsella
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    Aug 13th 2018, 7:11 AM

    It’s not work I’m after, it’s employment, your honour.

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    Mute Dan
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    Aug 12th 2018, 11:29 PM

    I should be making a fortune then…

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    Mute Gerard Heery
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    Aug 13th 2018, 7:44 AM

    If that’s the case all the government are entitled to it

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    Mute Raymond McGee
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    Aug 13th 2018, 12:16 AM

    It is a legally binding decision by an individual WRC adjudicator but it can be appealed by either party to the Labour Court, a 3- person tribunal, whose decision is final

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