Barbaric scenes coming from Belfast - the video is harrowing.
A man has been seriously injured after what police have described as a stabbing incident in Belfast last night.
https://t.co/1OCUbvjh36
Sinn Féin has always been clear: the EU Migration Pact is not in Ireland’s interest.
It is the Irish people who are best placed to make our decisions, not Europe. Fianna Fáil and Fine Gael are wrong to hand over sovereignty on this issue.
Sinn Féin will be calling for a special debate in the Dáil this week. TDs will have an opportunity to vote in support of the debate taking place.
We need an international protection system that is fair, managed and properly enforced - one that the people can have confidence in.
We hope @MichealMartinTD honours his personal commitment to Craig Coady to "do everything I can to get the Skyclarys drug to your son and to 200 other patients." With the HSE Drugs Group meeting this week to evaluate funding for new medications, the country is watching. We are urging decision-makers to fast-track approval without further delay.
There is no question when people need life-changing medication.
Paudie and others living with Friedreich's ataxia cannot afford to wait.
#FriedreichsAtaxia #Skyclarys #AccessToMedicines #HSE #PaudieCoady #CraigCoady
https://t.co/4JcgRX6Ah7
I've emailed @CarrollJennifer again following her article in the Irish Mail on Sunday.
Dear Minister Carroll MacNeill,
I am writing to you as the mother and full-time carer of my daughter, Katie Byrne.
I read your article in The Irish Mail on Sunday where you stated that Ireland should not accept a health service where the best care is linked to the ability to pay.
I need to be very clear with you. Writing articles about fairness and equality means absolutely nothing to my daughter while she is being left in pain.
Your secretary told me that if I was not happy with Katie’s treatment, I should lodge a complaint. That response was deeply upsetting. I am not simply “unhappy” with Katie’s treatment. I am watching my daughter suffer every single day while the system continues to fail her.
I have contacted you before. I have emailed. I have explained Katie’s situation. You already have her files, but there are now further medical documents and updates to add since I last emailed you. Despite this, my emails have been ignored.
So please do not patronise parents like me with empty words about equal healthcare while families are being left to beg, fundraise and fight for treatment their children need.
Katie is 19 years old. She has cerebral palsy, hip dysplasia, a twisted femur, a retroverted pelvis and a labral tear. She is in daily pain. Her mobility has declined. Her independence has been taken from her piece by piece. She is sitting her Leaving Cert while relying on painkillers, heat packs and a wheelchair.
Irish consultants have said no. Dr Dror Paley has said yes.
The only thing stopping Katie from getting the surgery she needs is money.
So when you say care should be based on need and not on ability to pay, I am asking you directly:
Where does Katie fit into that?
Because right now, Katie’s future depends on fundraising. Her chance at surgery, her chance at less pain, her chance at keeping what independence she has left, is being decided by whether we can raise enough money ourselves.
That is not a fair health service.
That is not equality.
That is not care based on need.
That is a disabled young woman being left behind by the very system that claims to protect people like her.
Families should not have to beg online, sell clothes, organise fundraisers, contact politicians, go to the media and plead with strangers just to get medical care for their child.
Katie needs action, not another article.
Katie needs help, not another promise.
Katie needs a health service that lives up to the words being printed in newspapers.
I am asking you to look at Katie’s case urgently, review the files you already have, accept the additional updated documents, and respond to me directly.
Yours sincerely,
Antoinette Burke
Katie Byrne’s mother and carer
We always knew Dad was one of the many men who went to Aberfan on that dreadful day in 1966. I have a vivid childhood memory of him coming home filthy and upset
But he would never talk about it, we had no records and now he has died
But then we saw this and we think it’s him
One of the most breathtaking train rides in the world.
The Bernina Express travels from Chur, Switzerland to Tirano, Italy on the Rhaetian Railway. It crosses 196 bridges and 55 tunnels, climbs over the Bernina Pass, and then descends into Italy
June 8, 793 AD: Vikings raided the abbey at Lindisfarne in Northumbria.
This is commonly accepted as the beginning of Viking raids in the British Isles.
Apologies for the long post in advance.
When we entered the scoliosis world of CHI in April 2024, Ms. Anita Little was only 4 months into her role as Business Manager of the Spinal Team. At this time we were fighting with clinicians and senior management for protocol compliance issues into the historical pathway of how our child and our concerns were dismissed with regards to her scoliosis, and also the failures to investigate the issue fully by CHI in accordance with the HSE Serious Incident Management Framework, the Your Service Your Say (YSYS) and Patient Feedback and Support Services (PFSS) complaints pathway.
I have sat down and mapped out the timeline for all the challenges that Ms Little faced during that time (from media published information) and the pivotal points that impacted patient’s care (Image 1). It has raised many concerns which I have highlighted (Image 2) in the hope that it might guide parents, and perhaps Ms. Little, to obtain answers to questions and that some people may be awaiting.
I am aware media articles are often devoid of details and not 100% accurate but it gives a basis, a platform and starting point to ask key questions of CHI Senior Management and those who are meant to oversee their actions.
Firstly, it is fact that every entry in the waiting list module of the Patient Administrative System (PAS) has an audit history or log. I know this because it is similar to the LIMS system that we used in Forensics and that many systems use all over the world including the NHS.
The logged in user, their IP address, the patient’s file they accessed, what actions they took, what the entries were changed from, and to, dates, times etc. This is the metadata on the system. Only certain personnel have authorization to log in and amend, edit or delete certain information. Those with access are registered with the organisations IT and Senior Management., for example: those in the FOI office do not have authorisation to go into the PAS system and update or list anything. An example of what metadata might look like on a referral triage in CHI is included in Image 3.
· Why in August 2024 when Ms Little and her colleague noticed that Harvey was removed from the list (not moved to suspended…but gone) was there no metadata visible to show them who carried out this action?
· Was this metadata also removed?
· Why has this metadata not been provided to Gillian and Stephen under a Data Subject Access Request (DSAR) from the Data Protection Office of CHI within the legislative time-frame of 3 months from the point of request, under GDPR Section 12 (a)?
If this metadata isn’t present on a patient's record, this is concerning as it highlights how vulnerable and ‘manipulative’ the PAS system is within CHI………holding a HUGE implication for accurate medical data transfer to the new EPIC system that is scheduled for the fully digitalised National Children’s Hospital. You can’t transfer what is not there….or is not accurate.
With the timeline, the 10 patients that Ms Little was asked to move from active to suspended….these were after someone removed Harvey.
But in February 2025, Ms. Ciara Ni Flathartaigh (Clinical Business Line Manager above Ms. Little) accused Anita and lodged a complaint that she removed 2 patients from the list without authorization.
· Why accuse her of 2? Why not the 10? Or…… were these 2 in addition to the 10?
· Was it Harvey plus 10 from November 2024 plus a further 2 she was asked to remove?
· Were the 10 that were removed, done so in an NTPF complaint manner with parents told according to Section 10.5 of the NTPF OPWL Protocol 2022 ?
·Or was Ms. Little instructed not to contact the parents in this instance also?
These 10 parents would have received a letter in August 2024 saying their child was on an active surgical list…..but then they were removed in November.... were they ever updated? Are they still waiting?
· Why, in an investigation by CHI, was the audit history or metadata information from PAS not accessed by Senior Management to prove or disprove who amended the listings for scoliosis surgery active waiting?
How, within 5 months of the complaint being lodged by Ms. Ciara NiFlathartaigh that she, Stephen Flanagan (Chief Financial Officer and Deputy CEO at the time) along with Ms. Anita Little were all gone from CHI…the first two by choice and the last one wrongly forced. Then, by November 2025 Keelin Hession(Director of Nursing and Manager to Spinal Nurses Dept of Orthopedics) resigned and so…from the November 2024 meeting where 10 patients were removed from the waiting list….none of the attendees worked for CHI anymore.
That is astoundingly "coincidental".
We have personally experienced the failings of CHI and, only this past weekend, I held my daughters hand as she struggled through a nerve conduction study carried out on her (still 19 months post surgery) numb and painful right thigh. I helped her dress, shower, comforted her when her muscles hurt in the hotel after, costing over €600 for a problem CHI insist just needs physiotherapy. She does it every day. She is 13. All since a surgery that could have been avoided. All the while CHI have refused to give us the answers and metadata surrounding Analla’s PAS entries, failed to meet the GDPR legislative timeframe of 16th May 2026 for all her data provision, and the HSE are now lumped with the job 2.5 years later, according to CHI CEO Lucy Nugent (Image 4)
My worries remain.
· Who removed Harvey from the active surgical waiting list? It should be there in the metadata….so why don’t the parents know?
· Who else did this person (Clinician or Senior Manager) remove?
· Why was this not visible to the Business Manager of the Spinal Team and her colleague who managed the waiting list?
· Who made the clinical decision for the 10 to be removed in November 2024?
· What made Stephen Flanagan raise the concern in October 2024? And to who did he raise it?
· Where was the clinical oversight in this decision?
· Were the 10 parents told of the removal in an NTPF compliant manner?
· Why did the formal complaint against Ms. Little only list 2 patients?
· Were these patients part of the 10 or separate?
· Why does an employee have to wait until they are formally dismissed from CHI before they can make a protected disclosure?
· Why couldn’t that be done in August 2024 or even November 2024?
These are not my questions to chase but they affect many families….at least the families of 11 patients.
10 unwell children, and more than 1 who has passed away, who need our voices.
Before We Die (BWD) is a parents’ lobby group, urgently campaigning for the Government to fund and deliver residential places for adults with intellectual disability.
▫️We aim to highlight the scale of the issue, raise the profile of families living with this reality, and empower parents and siblings to join our campaign. We are pressing the Government to meet the targets set out in its 2021 Disability Capacity Review, so that adults with intellectual disabilities can live with dignity, security, and independence.
🙏Join us, share our message, and add your voice to the campaign.
#BWD #CarersWeek2026
Before We Die | Join Our Fight for Support 👇
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