Úna Keightley
@UnaKeightley
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Co-lead of @SBH_PAG . Advocate. for better Paediatric Spina Bifida/Scoliosis care in 🇮🇪. Radiation Therapist. All opinions my own.
Kildare, Ireland
Joined March 2022
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Last Seen Profiles
Pinned Tweet
Statutory Inquiry + taskforce we cannot be clearer on our asks or why they are needed.
@scolionetwork
@SBH_PAG
are calling for a Statutory Inquiry
@LeoVaradkar
For those who may not understand why take a look at some of the headlines over the past years.
The ongoing state neglect of our children.
@DonnellyStephen
@BernardGloster
@npsoIRL
@TheHPRA
@SimonHarrisTD
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Listen back from 10:38
@drivetimerte
where this absolute spoofer, waffles on about his trips to the USA but won't give a timeline of when the 4-month target for scoliosis care will come.
He is furious apparently, someone needs to tell him he is in charge.
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It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
"This is a bit of a scandal"
Shocking revelation tonight in the Seanad where Minister Donnelly says the majority of the €19m for scoliosis services was spent "far more broadly" by CHI.
CHI promised to eradicate 4 month waits with that money.
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@caulmick
@SimonHarrisTD
I was one of the parents that met with
@MaryLouMcDonald
&
@davidcullinane
Our children's plight should not to be trivialised by you to share as tasteless taunts for your TikTok
Shown them some decorum, you can follow their TikTok 👇
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Families not surprised €19m scoliosis fund was spent on other services
We take no pleasure in knowing we were correct our children have & are suffering.
#backus
@scolionetwork
@SBH_PAG
@mandacoughlan
@chelleylong
@ClarCahill
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On to Brussels to highlight the dire situation children living with spina bifida/scoliosis are experiencing in Ireland 🇮🇪
Our own Taoiseach
@SimonHarrisTD
has failed to make time to meet
We will be in front of European MEPs in Brussels in coming months
#backus
#advocacy
♿️💪
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@caulmick
@eilishor
@Independent_ie
To knowingly steer monies away from children like Liam & others with complex needs is criminal
In some cases life long loss of lung function has occurred, harm has been caused due to misspending of funds
@CHI_Ireland
management & board have further disabled, disabled children
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Ohhhh the irony of being in
@TempleStreetHos
looking at the medical records of your child on the deadline that
@CHI_Ireland
failed to supply said medical records by….🚫 📔
“Non reply by us deemed as refusal” and despite advising that queries will be taken via phone/email there
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Why is the advert for CEO of
@CHI_Ireland
only being advertised in the bowels of LinkedIn?
Why isn’t it on etc.?
Why no detailed job description?
What’s the reasoning for the job not to be widely advertised?
@BernardGloster
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@AccessForAll7
@struggleiswheel
@adayinmywheels
@mulvanypeopleb1
On recent tour of
@nch_info
I noted that floor plans for neurodisability ward showed they are on one of the higher floors without direct wheelable access to a garden 😓
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The sad reality is our children know what this means for them.
Thank you to
@davidcullinane
for trying to right this wrong.
Government votes for it's own watered down version
Those who voted Tá/Yes have failed our children they allow them suffer on in unimaginable pain
You don't
#backus
, you turn your back to us
The motion drafted by
@sinnfeinireland
@scolionetwork
& us was the answer to this crisis
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What will TD's of
@OireachtasNews
do on Tues 20th Feb
#backus
& support the motion or turn their backs on us & our children?
Motion can be read here
Our children have been failed by
@SimonHarrisTD
&
@DonnellyStephen
@scolionetwork
@SBH_PAG
@davidcullinane
Parents of children with scoliosis and spina bifida say they are deteriorating on waiting lists for essential spinal surgeries. New figures from Children's Health Ireland show an all time high of 327 children on the list, with some waiting in pain for years.
@ElleLenn
reports.
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100’s of children attending the
@CHI_Ireland
Spina Bifida MDT clinic
@TempleStreetHos
no longer are receiving a review by a Spinal Ortho Consultant
Children not being seen so they cannot be wait listed for surgery
@SBH_PAG
@scolionetwork
#backus
Thank you Tom for speaking out
👇SCANDAL - Ireland Failing Hundreds of
#Disabled
Children - Suffering & Deteriorating on Waiting Lists For Complex Spinal Surgery -2 Years After €19 Million Was Made Available & Misspent - No Spinal Reviews in Temple St -No Qualified Spinal Surgeon -Children Becoming Inoperable
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@katrionaos
Financial barriers around transition year was actually discussed on Tuesday by
@OCO_ireland
the Joint Committee on Children, Equality, Disability, Integration and Youth,
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Ready and waiting to get off this rock 🪨
@LeoVaradkar
when will you meet us four mammies
@chelleylong
@ClarCahill
@ac2301
@scolionetwork
@SBH_PAG
#backus
"I will perish on this rock on this. The Taoiseach needs to meet us"
Co-lead of the
@SBH_PAG
@UnaKeightley
calls on Taoiseach Leo Varadkar to meet with them & demands an independent review into the Temple Street scandal
"Our little children have been failed"
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Honoured to be recognised by
@irishexaminer
alongside
@chelleylong
,
@clarcahill
&
@ac2301
in this amazing line up woman
Our ask in simple, timely treatment & access to care for the children of Ireland
It's a children's rights issue
@SBH_PAG
@scolionetwork
@oco_ireland
#backus
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Credit to
@ClarCahill
of
@scolionetwork
for assisting a parent in a horrendous situation
Advocating on their behalf, emailing on their behalf
A huge support to parents, we’d be lost without you
@aarondalydub
@ericbrennan_
@pamdennehy
@SherrattGillian
@chelleylong
@mandacoughlan
‼️Update : We’ve been informed today that one Halo Gravity Traction chair has finally arrived at CHI, which will make a huge difference for a child in urgent need ❤️ However, this is just one step forward.
There’s still €19 million unaccounted for, Minister
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Thank you
@ReadaCronin
for speaking on behalf of my son Seán in Dáil Éireann
Réada has been a long time and consistent support to me & my family in North Kildare, the local issues we encounter & on a national scale with access to timely Spina Bifida care
#backus
The Scoliosis & Spina Bifida Children... left waiting
People are disgusted at the way children are being left in pain with their organs crushed due to the state of the spines -
@ReadaCronin
#BackUs
#D
áil
#HealthCrisis
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@AccessForAll7
@struggleiswheel
@adayinmywheels
@mulvanypeopleb1
I doubt there’ll be any design flaws in the income generating retail units at the New Hospital as they’ll have been meticuously designed with the user in mind.
🛒🛍️💶
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Thank you
@davidcullinane
the families of
@SBH_PAG
&
@scolionetwork
will be watching in the Dáil gallery tomorrow with our children accompanying us.
Tomorrow I will move a motion in the Dáil on supporting children with Spina Bifida, Scoliosis and other orthopaedic conditions.
The Children deserve so much better
I have engaged with families, parents and groups in putting this motion together.
I hope all TD’s fully
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Big reveal of whom the "New" spinal consultant is 🥁🥁
It is an Orthopaedic surgeon who has worked
@CHI_Ireland
for at least 15 years, has a massive workload, & already sees many of the children living with SB as patients.
How are they new?
Data & facts beat PR spin every time
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We have heard more apologies than a confessional box. Cop on and do the right thing, give the families their child's medical records, a statutory review & a taskforce.
"While that apology was being given, the parents of a six-year-old boy with an alleged unauthorised device in
Mr Justice Brian Cregan made his remarks as CEO Eilish Hardiman attended the High Court as the organisation apologised & its counsel accepted there had been “total breakdown in communication” with the parents of Luke Byrne from Dublin.
@LeoVaradkar
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How not to manage a crisis
• 2 x theatres closed in
@TempleStreetHos
for Dec
• No insourcing of staff to help or outsourcing
• No independent 2nd opinions
• No taskforce
• Children suffering
Staff cannot be expected to deliver more with no additional resources
#burnout
Surgeries for children with Spina Bifida & Scoliosis have now been paused since Nov 22. In what other country would this be acceptable ?
The window of opportunity is closing for surgical interventions
Add to that no access to PICU beds
@LeoVaradkar
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Received this from children’s network disability team last night, basically unless it’s a catastrophic event don’t contact us.
For staff working at these section 39 agencies it must be equally frustrating & stressful as it is for parents
#staffburnout
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@caulmick
@scolionetwork
@SBH_PAG
The Minister did not heed our warnings
@SBH_PAG
@scolionetwork
#backus
It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
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Flight delayed but delighted to be heading to Brussels to discuss advocacy groups dealings with
@CHI_Ireland
@HSELive
@roinnslainte
with EU staff. Looking forward to visiting
@EU_Justice
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Children living with scoliosis/spina bifida/time sensitive orthopaedic issues don’t have time to wait.
@scolionetwork
@SBH_PAG
More delays and more incompetence on delivering the National Children’s Hospital. While children with scoliosis wait years for treatment & children have their hospital appointments cancelled this Governments inability to deliver big projects means children will have to wait
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@AnybodyButBerti
@DonnellyStephen
@mandacoughlan
@SBH_PAG
@scolionetwork
@SimonHarrisTD
@davidcullinane
@SenatorMcDowell
@TomClonan
@MaryLouMcDonald
@chelleylong
@ClarCahill
@mulvanypeopleb1
@CeoHardiman
@ivanabacik
@SimonHarrisTD
has been made aware, he wrote to us and advised he would meet with the parental advocates months ago.
We at
@SBH_PAG
&
@scolionetwork
are still waiting on a date.
No urgency from an Taoiseach on this matter.
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@FineGael
@SimonHarrisTD
@SimonHarrisTD
I was one of the parents that met with
@MaryLouMcDonald
&
@davidcullinane
Our children's plight should not to be trivialised by you to share as tasteless taunts for your TikTok
Shown them some decorum, you can follow their TikTok 👇
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“When did you know?”
@DonnellyStephen
told by
@SBH_PAG
in Feb 22 that children & families were having to resort to incontinence wear use because children couldn’t get access to Urologist.
Many suffering from repeat urinary infections.
Sadly this is still the situation today.
Epic Fail. Institutional Abuse of Women & Children a Shameful Feature of Irish History. Ireland’s Current SHAME?
@CHI_Ireland
Failing
#Disabled
Children on Spinal & Urological Surgery Wait Lists. Young Teens with Paralysis, Incontinence, Sexual Development Compromised.Why?
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If no one sees the children, they can't be listed.
Is this a method by
@CHI_Ireland
to try to manage waiting lists?
These children have a 50% chance of developing Scoliosis, so by not having them reviewed they don't need to list them now.
Ignore the children & their suffering
Children travelled from all over to attend the Spina Bifida MDT at Temple Street yesterday
There was no Orthopaedic Consultant present to review the children's spines, hips, legs.
Wholly unacceptable
Parents told, same old solutions are coming.
This is a crisis! Action needed
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The funding breakdown given by
@CHI_Ireland
alarmed us, and we wrote to
@DonnellyStephen
Summer of 2022 advising him
Myself &
@mandacoughlan
will be providing the HSE Internal Audit Division printed handouts, timelines, emails of funding breakdown to ensure a thorough audit
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All the coordination of childcare with complex needs, the many hours of research, the speaking with parents/families and staff.
All for free in their own time and for no other reason than to try to work in a collaborative way to improve services
This is how advocates are treated
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Could not agree more health & hospital management must be held to account for failures in the same way as those delivering front line services are.
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It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
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198
1
12
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The penny needs to drop that
@CHI_Ireland
management are purposefully misleading members of the Oireachtas
@CarrollJennifer
you spoke on this yesterday with the info that was provided to you
Waiting lists decreases in Urology is due to parents taking out loans & paying for
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It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
5
117
198
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Asking all TD's of all parties,
#backus
& our children please in today's motion today Tues 20th Feb
We can now call broken promises what they are.
They are lies!
Simon Harris lied to the parents of scoliosis children.
Does anyone think he cares about them now.
I don’t!
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@scolionetwork
@MalcomsonLaw
@SBH_PAG
This family have been through enough, they’ve still along way to go to get their child healthy and well.
Instead of
@CHI_Ireland
assisting the family in every way imaginable, they are having to go to the high court to access his medical records.
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Busy morning at
@EU_Commission
advising of lived experience of advocates dealing with
@CHI_Ireland
,
@HSELive
,
@roinnslainte
, Europe is listening, Europe has been told.
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5 years still no surgical date, cases like this highlighted multiple times by
@SBH_PAG
&
@scolionetwork
to
@CHI_Ireland
still no action, just deterioration of children.
@CeoHardiman
@IkeOkafor16
@npsoIRL
care to comment to
@CatherineS58548
maybe send a letter? Explanation needed
@CMHaughey
@scolionetwork
@LeoVaradkar
@DonnellyStephen
@CeoHardiman
@IkeOkafor16
@BernardGloster
@CHI_Ireland
As a mum to a child with Spina bifida who is waiting for a kyphectomy i feel your pain. My Daughter is waiting 5 yrs since we were told she required this surgery. Heart breaking is an under statement.
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I’d admire Aoife’s family so much.
#AoifeJohnstonRIP
Aoife’s Family have refused to meet
@HSELive
boss
@BernardGloster
unless and until the full, unredacted Report into her tragic, preventable death is published.
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No letter has ever been issued by
@CHI_Ireland
to parents of children attending the Spina Bifida MDT to reassure or offer who in management to contact with queries, in these distressing times.
Parents getting info from the media or the courts.
@UnaKeightley
@YoginiTe
@raleighreports
@SBH_PAG
@DonnellyStephen
@LeoVaradkar
@TomClonan
@scolionetwork
@orthokids_irl
@CHI_Ireland
For me the lack of CHI voices on this speaks volumes.
CEO missing in action.
No reassurance to parents, no public visibility, no comment.Nothing.
Culture must change from the top down. Until this happens our children will suffer.
Enabled by
@DonnellyStephen
@BernardGloster
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@AddressingLife
The Minister was informed 2 years ago…
It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
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After seeing post from
@emmawardjourno
purchased
Plan was me & my 13 -year-old would each read a chapter then swop, but I am too slow 😂, he's way ahead, fascinated by the story.
The upcoming generation of the disability community should know their history
#neverknowyourplace
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A role advertised in December 2023 made for the sole purpose of increased patient advocacy engagement. Advocacy groups nor parents have no knowledge of who this person is…..
@SBH_PAG
@scolionetwork
@CHI_Ireland
@CeoHardiman
@npsoIRL
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Why does the child & the mother always suffer?
Mothers of
@ThalidomideIre
saw their children suffer for taking a drug, mothers of
@SBH_PAG
see their children suffer for their body not absorbing a drug (folic acid)
Decades on we have not evolved
#backus
#scoliosis
1
9
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@scolionetwork
@MalcomsonLaw
@SBH_PAG
Taskforce needed if
@CHI_Ireland
can’t even provide to the child’s family the medical records he desperately needs how are we expected to believe they can coordinate and deliver safe care to the many complex kids waiting.
@LeoVaradkar
@BernardGloster
still waiting on your reply
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“We tried to raise our concerns repeatedly through the official complaints procedure, and I copied the clinical director into many emails, but heard nothing back.”
This phrase rings a bell..
@IkeOkafor16
@CeoHardiman
@npsoIRL
@SBH_PAG
@scolionetwork
@CHI_Ireland
is currently outsourcing children to GOSH.
#Taskforce
Questions must be asked of the appropriateness of this outsourcing initiative while an investigation is ongoing.
“Serious questions are being asked about the culture, management and
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@CHI_Ireland
while we appreciate the info being available to the failed parents of children living with Spina Bifida under your care as Gaeilge message still the same
#p
áistíinpain
Was there a grant provided for this initiative I wonder?
#FOI
Care should be prioritised over PR
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Official Inpatient Day case treatment lists.
Upward trend waiters over 18 months 📈
Downward trend waiters 0-6 months 📉
18 month + waiters are generally more medically complex children ♿🩺💊
Have
@CHI_Ireland
management forced a simplest first, not sickest first administration?
1
20
28
@scolionetwork
@SBH_PAG
@DonnellyStephen
@paulcullenit
When you are often on panels with TD's/journalists/advisors, it should be remembered that advocacy is not my job (I am a Radiation Therapist & treat cancer for a living)
Arranging to attend meetings with childcare, time off work etc. is not as easy as it is for me as it is for
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@mandacoughlan
shouted from the rooftops but TJ still waited & became inoperable under
@CHI_Ireland
"care"
No one ever questioned as to who allowed this to happen and why
Those who lead the Orthopaedic service and in management at this time, have received promotions
All spinal operations for children with Spina Bifida have been paused since 2022
TJ has been failed, now
@DonnellyStephen
@BernardGloster
@SimonHarrisTD
@CcoHse
fail those coming after him
"I waited 4 years for life-changing op - now it's too late"
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@scolionetwork
@TheHPRA
@CHI_Ireland
@DonnellyStephen
@TomClonan
is 100% right a discussion needs to happen around
@CHI_Ireland
management team and the Board.
@RoisinShortall
@davidcullinane
@paulmurphy_TD
@DuncanSmithTD
@MarianHarkin
Irelands Shame-The Continued Injury & Suffering of Disabled Children on Surgical Wait Lists-Spinal & Urological Surgeries -Constitutes Abuse.The Real Story of Incompetence
@CHI_Ireland
&
@HSELive
is NOT Billions of Euro Cost Overruns -It is the Damage to Disabled Children & Teens
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@scolionetwork
@DonnellyStephen
@npsoIRL
@CHI_Ireland
@HIQA
@TheHPRA
@SimonHarrisTD
@davidcullinane
@TomClonan
@OCO_ireland
@CeoHardiman
@SBH_PAG
Message received, we are disinterested, go away.
These parents are annoying, looking for answers as to why their children are being left in pain.
Until each and every stone is unturned & we know why & how our paistí have been left in this state.
We won't, we can't.
#backus
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A year ago today, myself &
@mandacoughlan
were in Temple St to give a presentation to reps from Boston who were conducting an external review.
The families themselves were refused permission to speak, so we were their voice.
Read the closing statement we gave 👇
#backus
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On our tour last week.
We discussed how communication from
@CHI_Ireland
management was poor & the need for transparency to parents
Told
@nch_info
hospital was 92% complete.
Told that
@DonnellyStephen
been given 3 names for the
@nch_info
Hospital & he gets to decide which one!
@TiocfaidhArLa66
@caulmick
@PearseDoherty
Went on the tour last week with
@UnaKeightley
of
@SBH_PAG
& 11 other parents. We were the first parents to get the tour as we’re on the family advisory network for
@CHI_Ireland
. We were told that they will get the keys 🔑 on the 29th Oct & it will take 6 months to commission. 😓
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@scolionetwork
@SBH_PAG
@SimonHarrisTD
Not as much as a letter has been sent to children living with scoliosis & or spina bifida from
@CHI_Ireland
to say who to contact if you’ve concerns, how to request a second opinion, not a dicky bird 🤐
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@IrishTimes
And the minister was made aware of this in 2022
It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
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Latest communication advises HSE are "exploring options". 4 weeks on, no rush by
@LeoVaradkar
to take charge and rectify this situation for Luke and the other children/families effected by this.
No urgency on
@LeoVaradkar
part to put in place funded 2nd opinions for children.
In her handwritten note of the conversation, she wrote: “Spring looks to be disintegrating/unravelling, will send side-by-side X-ray pics (from 2020 and 2023) tomorrow.”
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Spoke on
@morningireland
communicating what parents are asking for in relation to spinal scandal.
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@scolionetwork
@SimonHarrisTD
@CHI_Ireland
@HSELive
@BernardGloster
I’ll take a moment this morning from the front of Temple Street Hospital to inform
@SimonHarrisTD
that you are listening to everyone & anyone except the parents of the children at the centre of this crisis
You states months ago you would meet us, more false promises
#backus
2
13
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@YoginiTe
@raleighreports
@SBH_PAG
@DonnellyStephen
@LeoVaradkar
@TomClonan
@scolionetwork
@orthokids_irl
It is so unfair to families, why should they have to forgo their anonymity to get care. It happens time & time again under
@CHI_Ireland
management, they are not fit to maintain a functioning service, let alone a crisis.
Massive emotional toll I'm sure being borne by staff also.
3
12
25
Once again parent's ringing around the houses at
@CHI_Ireland
trying to get this independent review . Now expected to tell their sorry tale of woe to "Physician Associates" they or their child have never met!!!!
Hardly appropriate now is it?
It is crystal clear that the right
Parents of children of Boston review to contact Spinal CNS in relation to independent review.
Spinal CNS on leave pushed to Physician Associate (PA).
Is it appropriate that this groups some who had non medical grade devices implanted that their care queries are managed by PA’s?
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4
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0
13
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@IrishTimes
Incorrect
@paulcullenit
Oct 2023 total of 316 waiting
Feb 2024 total of 327 waiting
All lists increased or static. Not to mention a whole cohort: all spinal surgeries for children living with Spina Bifida halted with no recommencement day.
0
10
23
There’s been no urgency at all from government.
5 months after our pleading to commence a taskforce
@DonnellyStephen
announced his plan for a taskforce that has no teeth.
He announces a spinal unit that has no location, no phone number, no email address.
@SBH_PAG
@scolionetwork
Children on scoliosis-related waiting lists deserve better.
Promises have been made and broken. Children need the Government to increase domestic capacity & make full use of international options.
There's an urgency to this and all options must be on the table.
@davidcullinane
22
56
136
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11
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Why does the press office continue to provide answers to journalists on these queries in 24 hour?
However months later parents whose children were submitted onto the spinal register still waiting on a reply.
@BernardGloster
as you are aware in March we contacted your office & DPO HSE for guidance in regards to data collected via the spinal register.
To date no reply.
DPO HSE office have not even acknowledged email.
Can you provide a reply ?
@DonnellyStephen
failed to reply
0
12
16
0
15
23
A simple question that
@CHI_Ireland
management refuse to provide a written answer to
Sure we were told in 2021 that they all have this training, so what could possibly be the issue?
@npsoIRL
@OCO_ireland
@HSELive
@BernardGloster
@DonnellyStephen
@LeoVaradkar
@CcoHse
@NationalQPS
@CHI_Ireland
fail to answer simple questions
Parents simply want to be reassured that their child's Paediatric Orthopaedic surgeons have a fellowship i.e specialist training in Paediatric Orthopaedics
Why the refusal to provide written reply to parents/advocacy groups on this?
2
10
20
0
20
23
Asking any of my
@TCDRadTher
colleagues to consider
@TomClonan
when using your vote
To all my friends & allies - Please ask any
@tcddublin
TCD Graduates or
@tcdalumni
to Register to Vote in Seanad Elections - Please Register & Please Vote at the next General Election TOM CLONAN No1
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@AnybodyButBerti
Sadly foreseen many years ago.
Still ongoing.
It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
5
117
198
1
4
22
Thank you
@MaryLouMcDonald
for meeting with us yesterday, and today in Dáil Éireann for supporting our view that
@CHI_Ireland
can have no hand act or part in drafting terms of reference.
Thank you to
@MaryLouMcDonald
@chrisandrews64
for taking time to meet and listen to parents
@scolionetwork
@SBH_PAG
@aarondalydub
@Horlickstothat
@ac2301
@UnaKeightley
#patientsafety
#backus
2
18
52
1
10
22
@tivnana
Years of advocacy & codesign with
@CHI_Ireland
by myself &
@mandacoughlan
& children with Spina Bifida have never been in a more precarious situation.
There’s no spinal consultant for 100’s of them, many likely will be at point of inoperability when seen.
0
12
22
Unexpected hospital stay of family member (all good) but only catching up now on Ireland's Thalidomide Scandal
@ThalidomideIre
"Great political leadership cuts through complications"
Why is
@SimonHarrisTD
not doing the right thing?
0
6
21
What’s needed: Taskforce (to manage all those waiting on intervention & in pain) + statutory review (to ascertain facts of all parties behaviours in this scandal)
We stand united to represent the views of our families. We remain united on not engaging with this review
@CHI_Ireland
@DonnellyStephen
@BernardGloster
as head of the hse do not have our consent to share our data
#backus
1
15
39
1
3
21
@scolionetwork
@chelleylong
@ClarCahill
@ac2301
#justfourmothers
hoping to get answers and change for the wider families thanks to
@sineadspain
for an informative & sensitive synopsis
🗣️
@sineadspain
reports on
#Templestreet
for
#RTETWIP
@SBH_PAG
Rebroadcast is tonight at 22:00 on RTÉ News Channel and at 23:00
@RTEOne
#RTETWIP
0
7
25
1
8
21
@tivnana
It is heartbreaking to read the impact mismanagement of care has on children.
The same people at CHI, charting the same boat, on the same course, into the rocks again!!!
But we are supposed to continue to wait & accept this as
@SimonHarrisTD
thinks CHI are the business
0
12
21
@TiocfaidhArLa66
@Stephen63224725
How to stay so clear on facts when the emotional toll is so immense.
I don't know how you did it
@Stephen63224725
💔
1
1
20
The families have done 20 weeks in the depths of winter through snow & ice they’ll be well able to do many multiples of that in the next while with the sun to warm them🌤️
Families protest
#CherryOrchardHospital
week 20.
@HSELive
ignores medical advice & resident well-being. Completed rooms at Willow West sit unused. Investigate this flawed process!
Political voice is urgently needed.
@MaryButlerTD
@BernardGloster
@roinnslainte
#TransferTrauma
2
13
19
0
6
20
The terms of reference will be set by us the representatives of the families. We are experts through lived experience. We will not allow them to be restricted by CHI and the HSE the very bodies that have consistently failed our beautiful children and us as parents"
Úna Keightley
Joint Press release with
@SBH_PAG
@CHI_Ireland
@BernardGloster
@DonnellyStephen
@CeoHardiman
@OCO_ireland
@ac2301
@UnaKeightley
@chelleylong
@clarcahill
#backus
#CareForOurKids
1
25
43
2
14
20
@drmikeselby
I had to read that a few times….to refer to a referral of a patient needing review as rubbish, is vile. Hospital management in all countries need to be accountable for their failures.
0
2
20
@CHI_Ireland
Excuse me what is this webpage the actual CHI website shows the barely staffed Spina Bifida Multidisciplinary team that are struggling daily doing their best to provide services when you won't resource them properly or adequately. Even with €19 million.
0
5
20
This is not the first time that
@CHI_Ireland
management provided misinformation in relation to Urologist positions
@ac2301
was told in June 2022 a new Urologist was in place, but the person was not actually a Urologist
Facts ⬇️
More incorrect info from
@CHI_Ireland
You've been misled
@CarrollJennifer
There are not 3 x urology consultants, there are only 2!
Proof here:
A now outdated 2011- HSE model said we needed at least 4.
Data & facts beat PR spin every time
@TomClonan
0
7
14
0
10
20
@thejournal_ie
Apologises but ignores the parents and children in the centre of this. Maybe he missed the 2 x radio interviews this morning, where we were clear on the asks..........statutory review + taskforce
@BernardGloster
@SBH_PAG
@scolionetwork
1
6
19
Au revoir Brussels.
Was lovely to witness Belgian National Day complete with a drone light show.
1
0
18
@scolionetwork
@caulmick
@SimonHarrisTD
More obstacles, zero transparency….shows we have & are asking the right questions
0
8
28
Up to €72k, no degree required, partnering up with patients/families/advocacy groups. It'll be a tough ask in this role you'll be improving outcomes for patients whilst not being able to deliver the clinical care/surgeries they need 😕 No jobs though for health care staff to
2
8
16
@TomClonan
Thank you,
@TomClonan
for bringing to the forefront the devastating impact that delayed care has for our children/families
Lack of timely access to orthopaedic & urology care under
@CHI_Ireland
has had lifelong negative consequences for children living with Spina Bifida
#backus
1
7
17
At this time with many of
@CHI_Ireland
senior management staff unfortunately becoming poorly with various afflictions it appears that it is an opportune time to implement the taskforce asked for by parents & advocacy groups.
15 years on from 2008 we are dealing with the same issues & failures 😢, will you
@LeoVaradkar
put a taskforce in place to manage this issue once & for all or allow another generation of children to be failed?
A shameful case
0
8
20
0
7
17
@prioritisekolbe
@Stephen63224725
@DonnellyStephen
@CHI_Ireland
@pippa_hackett
Parents writing letters when they get 5 minutes break from caring for medically complex children.
TD’s can pass tasks to their staff.
0
6
19
So now that we know claim made by
@SimonHarrisTD
was untrue
Care to get back to the issue of providing care for children living with Spina Bifida/Scoliosis
@SBH_PAG
@scolionetwork
0
10
16
Parents have been put through enough the last 10 days we should not have to constantly go to the media to get answers. No comment from
@CHI_Ireland
yet again.
@EoghanDalton
thank you for highlighting
“Many of the patients from Temple Street have been transferred into the Crumlin system, and Crumlin has been subject to an audit which hasn’t been disclosed,” Bradley said.
@BernardGloster
can we please see this report published without delay.
1
51
72
0
10
17
@Stephen63224725
@CHI_Ireland
3️⃣ I would not trust them to think that an FOI for from 2014-2018 showed a member of the Board was double jobbing for a company that was awarded at least €11,650,049 by the HSE
4️⃣ I would not trust them to underestimate the mother of a son harmed but they do to their detriment
0
7
17
Pointless to refuse, as can request via Freedom of information.
A screenshot from
@HSELive
online open disclosure training module, lived experience does not reflect this.
Spina Bifida parents should know if the Orthopaedic Doctors treating their children have paediatric/SB
Nov ‘23 we asked
@CHI_Ireland
to supply details of the current Ortho Services - including are all surgeons on specialist register ?
A very valid concern of our members.
CHI did not answer 1 of our questions.
This is not acceptable.
We do not want discussion we want facts.
1
17
26
0
10
17
It is untrue
@DonnellyStephen
to claim that there was NO knowledge that money was being allocated elsewhere
There was knowledge
@mandacoughlan
& I contacted your advisor & you numerous times around the allocation of this funding
@SBH_PAG
&
@scolionetwork
shared concerns
#backus
5
117
198
1
6
16
Such a lovely day seeing the
#cappaghkidscrew
with
@ac2301
excited to see what the future holds for
@CappaghKids
at the
@NOHCOrthopaedic
A positive advancement in Orthopaedic care for children with complex conditions.
0
1
15
@SportIreCampus
-Out of order wheelchair swing
-Lift out of action for over 2 months
-5 non-blue badge cars using accessible spaces, at least one is a
@SportIreCampus
employee
Needs attention for the betterment of para athletes & persons living with disabilities
3
9
16
@SBH_PAG
@DonnellyStephen
@BernardGloster
@scolionetwork
Thank you
@raleighreports
for this in-depth article on plight of families, it also explains why parents are boycotting the current review.
Minister Stephen Donnelly has said he is “not satisfied” that €19million he allocated to CHI to reduce the spinal surgery waiting list had
0
11
16