Amanda O’Rourke née Cullinane #BackUs

Married to Ciarán @doalty SAHM of 2 & carer to 1 with complex needs including scoliosis. Passionate about children’s & adoptees’rights. M&BH adoptee. She/her

[Amanda O’Rourke née Cullinane #BackUs @Horlickstothat]

“We are just concerned about the care of the children. It’s the safety of the opening, the capacity to give care for children.”

“The narrative..”‘This is going to deliver a great hospital.' That is tone-deaf,”

#JusticeForHarvey #Scoliosis #BackUs

https://t.co/1xhlAjWpI5

[Dr Tom Clonan @TomClonan]

This week I asked the Minister to remove discriminatory clause in Dept Education Circular on Special Classes which denies children with @DownSyndromeIRL & other Disabilities access to Speech Therapy - Hundreds of #Disabled children denied basic Human Right to Speech @InclusionIre

[Tiocfaidh ár lá @TiocfaidhArLa66]

€19m misappropriated, money provided to reduce the unsafe wait times for spina bifida/scoliosis surgery - we still don’t know where that money has gone… Meanwhile €66k and the Gardaí are investigating 🤷🏻‍♂️

[𝐂𝐚𝐫𝐦𝐞𝐥 𝐂𝐚𝐧𝐭𝐰𝐞𝐥𝐥 @ctcantwell]

Catriona Crowe, former Head of Special Projects at the National Archives. Catriona has been a tireless advocate for survivors of institutions in Ireland & is calling for a CPO, Investigation& Excavation at #Bessborough. #nobuildonbessborough #motherandbabyhomes #justice

[Care Champions Ireland @CareChampions2]

A damning HSE internal audit reveals that children are facing years-long waiting lists at Children's Health Ireland (CHI), leaving distressed parents with minimal information as their children suffer in pain or deteriorate. Surveyed families described a system that prioritizes policy over empathy, with some receiving little more than annual automated letters to renew their interest or facing the risk of being removed from lists entirely. In response to these findings, healthcare officials have pledged to implement 31 recommendations aimed at improving patient communication and actively engaging with family advisory networks.

#CHI #Scoliosis #spinabifida #Report #JusticeforHarvey

https://t.co/SlLR8YMqol

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

With the findings of the audit into CHI published today it brings me back to my post last December.

CHI have ignored everytime I listed how their lack of compliance, failure to triage appropriately, moving kids around on lists, mis-listing children, not meeting time frames etc was a HUGE issue and how by not adhering to those protocols....our daughter was missed.
She was deprived of the opportunity for non invasive conservative treatment.
Her life is forever changed due to their non compliance.

Not once did Eilish Hardimann, Fiona Murphy, Lucy Nugent, the Incident Management Team nor the Deputy CEOs EVER say that the 6 things I found in Anallas referal (as non compliant) were correct. Left me battling a void of evasion and omission for over 2 years.

The HSE NTPF and the auditors have stated that CHI are failing on every single point that I raised.

@CarrollJennifer seeing as they are under your remit.....will I let the postman know that I am expecting CHI headed note paper with an apology for the denials of the last 2 years?

I have 9 folders where CHI state I was wrong.

I now have 3 documents where you state that I was right.

What about all the statements that have held true for @scolionetwork @SBH_PAG ?
Waiting list mismanagement, lack of compliance and extended wait times?

Its there in black and white that we were right.....where is our apology from CHI and your department as their overseers?

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

Spinal Wait List Updates due to be published last Friday … no where to be seen.

Interesting to note if @CHI_Ireland continue to be non compliant with the NTPF protocols …

The next wait list update will be telling …

& of course STILL
▶️ No update from the Spinal Taskforce since May 2025.

@CarrollJennifer @npsoIRL @SimonHarrisTD @AnneOConnorIRL @HIQA

[Laura Durcan @Rheum2improve]

Just to clarify any schedule Qs: last week I worked the full week, on Friday i was in till 10. On call overnight.

Saturday from 6 am I spend the day rounding and on Sunday I did the same.

Monday I worked my usual week.

I love my job. But it's a lot.

[Tiocfaidh ár lá @TiocfaidhArLa66]

@GillSherratt23 90% of cases, in Spinal initiatives, had gaps or inconsistencies in their CHI documentation - missing
referral letters, unclear urgency categories, or absent signatures from triaging consultants. 90% (as in nearly everyone)... WTF?

[Gillian Sherratt @GillSherratt23]

Speciality Specific Findings:
•risk that patients are not treated within clinically recommended timeframes.
•risk that waiting lists do not accurately reflect the true length of patient waiting times.
•risk of inconsistent clinical prioritisation and triage recording.
•risk that compliance with NTPF protocols cannot be demonstrated.
•risk that funded initiatives are not sufficiently governed or evidenced.
•risk that initiative eligibility and delivery cannot always be validated.
•risk to data quality, performance reporting and management decision making.
•risk of over-reliance on informal or verbal processes.
•risk that service capacity constraints continue to drive long waits.

[Gareth Noble @GarNob]

Thousands of vulnerable children’s records ‘may be destroyed’ in coming weeks https://t.co/oug6qc6q7J

[Gareth Noble @GarNob]

Absolutely shameful.
Minister Norma Foley is insisting on the shut down of Barnardos, Tigala and Gallore in favour of having political control on a child’s voice in childcare proceedings for herself - and the first thing she does is insist that she won’t allow historic and current vital information about children to be carried into her new service.

[Amanda O’Rourke née Cullinane #BackUs @Horlickstothat]

@scolionetwork @McNiffecent A very Happy Birthday from the O’Rourkes. 🎂🎁🥳💕

[Care Champions Ireland @CareChampions2]

Recognition is nice, but rights are essential. This #CarersWeek, as we do every week, we are amplifying the voice of family carers who deserve tangible support, not just platitudes. 📢

#CareChampions #rightsforcarers

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

The Department says Taskforce members are continuing to work collaboratively.

How? Where are the updates ?

The Paediatric Spinal Taskforce has not met in 9 months.

The last public update was over 13 months ago.

It’s an insult to parents and children. @CarrollJennifer @SimonHarrisTD

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

DOH has confirmed the Paediatric Spinal Taskforce has not met since September 2025.

Yet the Taskforce was established to:

• Oversee implementation of @HIQA recommendations
• Oversee recommendations arising from the Nayagam review
• Improve waiting list management
• Improve governance of spinal services
• Ensure transparent communication with families
• Report progress to the Minister

How can a Taskforce fulfil its oversight function for HIQA and Nayagam recommendations when it has not met since September 2025?

No minutes published since May 2025.
No updates to families.
No public progress reports.

@CarrollJennifer

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

In 2017, we warned about inequity in access to care.

We questioned a system where some families could access assessment quickly while others waited years for a first appointment.

We were told there was no issue.

Nine years later, reports suggest those concerns were well founded.

Families have been vindicated.

Why is the Equity of Access Report still being withheld? @CarrollJennifer @wereontheditch @SimonHarrisTD

[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

[The Scoliosis Advocacy Network #BackUs @scolionetwork]

The ongoing mismanagement of waitlists at CHI Ireland continues, despite the 2017 NTPF Audit and reports from the Office of the Children's Ombudsman.

The reported wait times for children by Stephen Donnelly and others are misleading, as we now know that 60 children were not even included in the database. @DonnellyStephen

[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?

[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?😓