Claire Cahill

Mum to 3 boys - Cofounder of @scolionetwork - #SCAD #SADs #scoliosis #LQTs

[Claire Cahill @ClarCahill]

Very hard to stomach this debate when our son is left abandoned on a wait list for his #scoliosis surgery. @CHI_Ireland

Wait listed 14 Nov ‘24

No option for treatment abroad ever offered.

Something stinks & children are paying the price. @SimonHarrisTD @CarrollJennifer

[Gillian Sherratt @GillSherratt23]

So the ‘town hall’ type meeting that was agreed to by CHI CEO Lucy Nugent is a closed door invite only event. Locking out valuable feedback I am sure many experienced parents have that should be heard.
I have a funny feeling this is the last time I will be invited to anything because here is the link..

https://t.co/cTogl03hTB

Only 100 spaces available ✊

[Dr Amanda (Tivnan) O’Sullivan @tivnana]

Yesterday we had a meeting with the HSE.

We did it and I have been in burnout since about 3am.

For the first time ever it was commented "that surgery could have been avoided".

Hse General manager for the REO(Regional executive officer), the REO for our area and the HSE lead coordinator over CHI.

Shocked at what we have had to go through and what no other parents could.

I don't know why, as people have been telling them what CHI are like...but I suspect that they get handed the usual BS that we are all been given by CHI senior management.

We asked for:

Plan to investigate fully like it should have been done for Analla, all of our compliant according to all HSE frameworks and protocols.

For ALL parents to have a place at the table in the serious incident investigative processes, be it CHI or HSE going forward. And if the parent can't manage that....then a representative that gives the child AND parents a voice.

For hEDS kids to have coordinated care and PROactive appointments- not just a review, call you hypermobile and discharge to the community physiotherapy service. Thats it.

They couldnt believe I was the one having to coordinate the kids care and the extent of what I have to do for them both, nevermind me.

For Scoliosis surgery kids to have much more follow up. Physio, ot, psychology, neurology, gastroenterology, cardiology, respiratory and rehabilitation supports.

The fact that no post surgery respiratory or cardiology assessments are done was a shock.

As one attendee even said 'complex surgeries wouldn't happen if there was proactive early care', like we have been doing with Braoc.

They were receptive, held accountability thats there'd been massive failures and apologetic.

Asking if she needed more surgery, CAMHS or HSE supports.

I hoped we have made a change for others....and this evening...out of the blue I got this email.

Is it possible that I might have made a difference? That Anallas experiences will stop happening? Only actions will tell....not words

[Dr Amanda (Tivnan) O’Sullivan @tivnana]

When a Scientist who has published peer-reviewed journal articles, book chapters and reviews, and who worked in Forensics... has documented evidence before a meeting with the HSE tmrw....you can be sure that she has outlined EVERY pathway protocol that has not been adhered to by CHI nor overseen by the HSE for her child.

That's one child.
That's one parent's battle to get answers to ensure others aren't being put through what we have.

Thats a 'summary' folder and diagram..just for them as light reading 😂

[Dr Amanda (Tivnan) O’Sullivan @tivnana]

After 2 years 2 months and 18 days we have now had to go to the Data Protection Commission to get Analla's medical data from CHI. The metadata behind her referral processing onto the Out Patient Waiting list in July 2023.

But...Analla's name won't be new to the DPC. And they let her and her brother down before.

In 2022 a false report to Tusla was made against us with respect to the children's neurodivergent diagnosis, POTS, hEDS, support needs, statement of services etc. by a school principal where the children joined for 5 months.

We found that 13 of the files and reports we gave the school before they started were 'destroyed' as confirmed by the principal in writing (below).

This was unlawful destruction and also inadverent admission to a false report as it was a flawed timeline...Tusla were told in May that 'we never gave any reports'....but to the DPC and us, the school said that they HAD those reports in June and destroyed them when the kids left. 🤔🤔🙄

We showed the evidence to Tusla. No action against the school.

We showed the evidence to Dept of Education. No action against the school.

We showed the evidence to NCSE as it's a worrying state if despite professional diagnosis, schools can ignore and report falsely. No action against the school.

We showed the evidence to DPC. No action against the school.

This accusation broke me and no one was held accountable.

This accusation could have cost me my children if I didn't have all their medical and support documentation as proof.

We have been told others have been accused similarly.

I watched 'Take Care of Maya' on Netlfix and it shook me. The only difference....I am still here...whereas many mothers broke beyond repair.

So when an organisation does wrong in Ireland and you go to their governing body....their overseeing organisation....and they too do nothing?

What are you left with?

@CareChampions2
@PhoenixRises_24 @caulmick @GarNob @GillSherratt23 @

[Claire Cahill @ClarCahill]

@SimonHarrisTD speaks about Active wait lists.

Our son has been waiting for spinal surgery since Nov 24.

Moved from active list to suspended.

He has disappeared from the public figures, but still waits for surgery.

Harris doesn’t represent my child

[Sinn Féin @sinnfeinireland]

The families and advocacy groups affected by the crisis at Children’s Health Ireland have shown extraordinary courage, persistence and dignity in their campaign for truth, transparency and accountability.

It is deeply concerning that groups representing more than 900 families now feel they have no option but to withdraw from the scoping process for a statutory Inquiry.

The Minister must urgently and meaningfully engage with these advocacy groups and with the families they represent. The Government made commitments to families and these commitments must now be honoured.

[Amanda Coughlan @mandacoughlan]

3 groups have now withdrawn as its not the in the best interests of families to engage , we cant all be wrong @ScolioIreland we stand united

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

We stand in solidarity with Gary Farrell and everyone at Scoliosis Ireland.

Patient advocacy groups repeatedly raised concerns.

The Minister @CarrollJennifer chose to proceed with the process rather than address those concerns through direct engagement.

Three organisations have now publicly withdrawn. We understand others have similar concerns.

An inquiry into children must start by listening to the voices of children and their families. @SimonHarrisTD @MichealMartinTD

https://t.co/iQNfBG7ipu

@SBH_PAG #BackUs

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

We have repeatedly called for the Equity of Access Report to be published. @CHI_Ireland

Instead, families appear to be learning about its findings through the media. @wereontheditch

Why has Minister Jennifer Carroll MacNeill not published the report as promised?

Publish the Equity of Access Report.

Families deserve answers. @CarrollJennifer @SimonHarrisTD

@davidcullinane @MaryLouMcDonald @PadraigRice @TomClonan @paulmurphy_TD @Toibin1 @ivanabacik

[Stephen Morrison @Stephen63224725]

@FergalBowers

[Aisling McNiffe 🇵🇸 🇺🇦 🏳️‍🌈🏳️‍⚧️ @McNiffecent]

#CarersWeek @BeforeWeDie
My bed for the last 4.5 weeks, who knows how long more. This is the reality for carers who have children with ID & complex medical needs. There are no facilities for us in adult hospitals. What do people thinks comes of our children when they reach 18?😓

[Gillian Sherratt @GillSherratt23]

“The report also found in 2023 alone the HSE paid more than €2.1 million for children’s spinal surgeries at Dublin’s private Blackrock Clinic despite senior health staff insisting there was capacity in public hospitals.”

@CarrollJennifer that audit would really have come in handy by now. Remind me again, who is the head of the spinal task force? Does he happen to work in Blackrock Clinic? 🙄

Your ability to access healthcare should always be prioritised based on your needs, not your financial status.

[deek @elizabethdmk]

@Brianne14437909 @MairinNolaczy1 @ClarCahill @scolionetwork @CarrollJennifer 💯 sadly, like so many other issues, no longer shocking or receiving the due attention & accountability from relevant authorities/personnel & media, certainly need to do better & push harder to bring such failings to the table for accountability & action.

[Tiocfaidh ár lá @TiocfaidhArLa66]

So let’s just step back for a moment and ask ourselves some serious questions, those same questions that should really be asked by @gardainfo (what the heck are you waiting for) to individuals in both the Department, the HSE and, while it exists, the CHI.

1. It’s well documented that a surgeon implanted materials into children that had no CE Marking, no authorisation for use from the Ethics Committee, and no Informed Consent obtained. This is a criminal matter, is it not.

2. That same surgeon, and others, undertook what an independent reviewer has deemed unnecessary surgical procedures on the hips/pelvis of children - hundreds of cases are subject to review. Performing unnecessary surgical procedures is a criminal matter.

3. Alleged misappropriation of public funds that were provided specifically for the purposes of addressing the grotesquely lengthy wait times endured by children and their families for surgical intervention to treat spina bifida and scoliosis. €19m just not accounted for where it was allocated - where is it, who has it, and who directed its diversion? Is this not a criminal matter?

4. The deliberate removal of children from waiting lists without consent or acknowledgement by parents, the persecution of employees who raised concerns both internally AND to the Minister @CarrollJennifer. Has this been attributed to children becoming inoperable or aging out of the system?

5. Questions remain with respect to Vertebral Body Tethering as raised by @Toibin1 and has this procedure been performed at a private hospital with the awareness/approval of CHI? Has this procedure yet been correctly coded for reimbursement?

6. Infection control - what measures have CHI taken to address the alarming rate of occurrence in post-operative infections, in particular those that necessitate a return to the Operating Room and/or require treatment of antibiotics via pic or IV?

7. We recently had a ‘report’ presented by @HIQA regarding the persistent ‘off label use’ of buttons where, instead of the intended use of introducing foodstuffs, they are instead used for the expulsion of urine from the bladder - in direct contradiction of ALL indications provided by the manufacturer of the devices. What ethics committee approval has been obtained and how, in the absence of cytotoxicity and biocompatibility analysis, has informed consent been obtained? Again, is this not a criminal matter.

What are you, the ultimate Person Responsible, hiding or pleading ignorance to @CarrollJennifer ? Because it’s all out there (probably not actually, as every week passes we see yet further revelations) and ignorance is no excuse. Children have died under the watch of your predecessor, children are becoming inoperable and/or aging out of pediatric care under your watch.

So to @GillSherratt23 points below, are you going to dignify anyone with a response?

[Mick Caul @caulmick]

Hospital employee flagged that €30,000 Aramark payment to CHI could be reviewed by watchdog - Martin Wall 09/06/26

PAC to consider emails about payment from company that ran restaurant service at Crumlin

The comments are set out in a series of emails attached to a letter sent by Children’s Health Ireland (CHI) to the Dáil Public Accounts Committee, which had been investigating the background to the payment.

Committee members on Thursday are expected to consider the letter from CHI chief executive Lucy Nugent in which she again said the group recognised it was “inappropriate” for it to have requested the donation in 2022.

She said the money had been repaid in full to the concession holder. #PAC #CHI

https://t.co/TGG2Lhj10k

[Dr. Brendan O'Shea @drbosheaGP]

Well, here we go again in GP 🇮🇪

Starting another ‘public’ patient (in their mid 50’s) with degenerative knee on opiate patch - they have intolerable pain & have already languished for over a year on orthopaedic wait list 😳😔

#Inequality

@IMT_latest @WalleyRay @TomClonan

[Orlaith Maher-Lalor @LalorMaher33771]

👇🏻👇🏻👇🏻 How can this be allowed happen, continue and still allow this dysfunctional, elitist, abelist CHI entity to operate within a Peadiatric Health System as acceptable or normal?
This is not normal.
This is harm & neglect of our vulnerable children…

[Gillian Sherratt @GillSherratt23]

So, Children’s Health Ireland, the organisation in charge of the sickest and most vulnerable children in Ireland has:
•delayed urological care so much that children are at increased risk of some cancers and infertility-and then not felt it necessary to even alert the families of these children.
•a surgeon on leave after implanting non medical grade metal springs in to children’s spines.
•potential misappropriation of €19million that was supposed to be spent to improve care of children with Spina Bifida and Scoliosis.
•allowed children wait on surgery so long they become inoperable.
•allowed children age out of their care without ever getting the surgery they need.
•children have died due to not receiving surgeries when needed.
•taken and hidden €30,000 from Aramark. The same company that charges extortionate prices in their hospital shop.
•surgeons allegedly performing hundreds of unnecessary hip surgeries on children.
•attempted to fire staff for alerting serious welfare concerns.
•a toxic work environment for staff.
•surgeon/s misusing the NTPF for their own profit.
•refused to publish a large number of reports that may outline other serious issues.
•removed children from surgical lists without informing the parents.
•threatened litigation when parents push back.
•threatened to, and got Tusla involved when parents pushed back.

@CarrollJennifer @SimonHarrisTD @MichealMartinTD @HSELive

Anything short of a *Public Tribunal of Inquiry* in to this absolutely negligent organisation would be an insult to all the children and families who have been physically and mentally harmed by this organisation.

#JusticeForHarvey #NoChildWaiting

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

For some families, having a child in hospital means counting every euro.

Food.
Parking.
Fuel.
Child care.
Missed work etc …

Some families resorted to GoFundMe campaigns to get their child treated abroad after being told funding wasn’t available. @CarrollJennifer

They were told there were rules.
They were told funding wasn’t possible.
They were told the process didn’t allow it.

That’s why today’s reporting is a shameful reflection on CHI.

Families who spent years being told what couldn’t be done for their child while management in @CHI_Ireland did what they pleased. @CarrollJennifer @SimonHarrisTD

@SBH_PAG #backus

[Brianne @Brianne14437909]

@elizabethdmk @MairinNolaczy1 @ClarCahill @scolionetwork @CarrollJennifer Yes ,It’s horrific neglect & we are being conditioned over time to accept this as a normal practice