Spina Bifida & Hydrocephalus Paediatric Advocacy
@SBH_PAG
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Parent-led voluntary group advocating for children living with Spina bifida and/or Hydrocephalus in Ireland Co-leads @mandacoughlan @UnaKeightley #backus
Ireland
Joined November 2021
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Pinned Tweet
We would like to announce the launch of our new website and our
#p
áistíinpain campaign. On our website you will be able to read our children’s stories, and about the absolute failings of the Irish health system to provide care
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This is not factual
@SimonHarrisTD
Liam is not being clinically monitored by an Orthopaedic Spinal Consultant, not seen one for weeks, he has rapidly deteriorated
A surgical date without clinical review is a hypothetical scenario, Liam needs a review
@pamdennehy
@scolionetwork
Taoiseach, Liam can't wait any longer. I am asking you as head of Government to intervene
@MaryLouMcDonald
#scoliosis
#D
áil
#IrelandisBroken
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This feels like a full force kick in the face with a steel capped boot.
Waiting all week on post for the surgery date to arrive.
The letters never came, parents struggling to keep up the pretence that all will be OK in front of the kids.
Because it’s not OK & the harm continues
Misinformation from
@SimonHarrisTD
There is no task-force in place.
Surely, at the least we should expect our government to speak the truth.
Harris should apologise to children waiting on life changing surgery.
#scoliosis
@SBH_PAG
@LeoVaradkar
@FineGael
@DonnellyStephen
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Smiling in the face of adversity as she heads into her 7th week of halo traction, something forced on her due to the lack of resources in Children health Ireland. Where is the accountability for the delay in her care?
@davidcullinane
@ivanabacik
@MaryLouMcDonald
@DonnellyStephen
5
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@DonnellyStephen
@TomClonan
Any comment on the children?
Surely that should be your first priority.
0
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An Orthopaedic Spinal surgeon has yet to review Liam
Liam has been in hospital for weeks
Liam’s case has been brought up on the floor of the Dáil by numerous politicians
@SimonHarrisTD
,
@DonnellyStephen
,
@BernardGloster
,
@CHI_Ireland
management all aware of the situation
Liam needs his surgery and he needs it now ... enough is enough⚕️⚖️💔🇮🇪
He can't take anymore and I can't take anymore of hurting him to help him 💔
Everytime he moves
Everytime I move him
@SimonHarrisTD
@DonnellyStephen
@scolionetwork
@SRS_org
@ScoliosisOnline
@scoliosisdoctor
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2016: Hannah's parents write to
@SimonHarrisTD
pleading with him to intervene to avoid children losing kidney function, Simon never meets, never intervenes
2024: Hannah permanently loses kidney function
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Parents cannot have confidence in CHI or the HSE to manage surgical lists. We demand Government to take ownership and work with us to establish a taskforce to provide urgent spinal surgical & Spina bifida services for our children now
@scolionetwork
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The pride we feel for our co-lead & warrior mammy
@UnaKeightley
is immense. We will always be at the table to fight for these children.
@DonnellyStephen
the ball is in your court retract your amendment for Kylie Ann's sake, she deserves better
#backus
Now we have
@UnaKeightley
explaining to us that they are sick and tired of being asked to attend meetings when there is zero outcome to those meetings.
It’s a soft soap and a lot of smoke and mirrors. Numbers are increasing and that’s the long and short of it.
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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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Thank you RTÉ news for coverage on this issue and to Tríona and
@ac2301
for speaking out
Scoliosis operations for children which were scheduled to take place over the next three weeks at Temple Street Hospital in Dublin have been cancelled pending a review. | More:
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An Taoiseach, you might need to check your figures absolutely no one is exaggerating what is happening to our children or how many are waiting you have down played it, figures according to
@CHI_Ireland
itself is now 333 ,disgraceful
@davidcullinane
@MaryLouMcDonald
@LeoVaradkar
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30 minute meeting in person in dublin is what has been offered to us and
@scolionetwork
by
@DonnellyStephen
that's how much time this scandal is worth to the minister and even less to
@LeoVaradkar
who won't engage at all.
#backus
@breeda_murphy
@lawlor_aine
@LeoVaradkar
@DonnellyStephen
@SBH_PAG
& us will not meet with
@DonnellyStephen
unless
@LeoVaradkar
is present also.
Of note, the 30min meeting offered by
@DonnellyStephen
is an insult to parents and families.
This is now a government issue and requires such a response.
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2nd opinions never happened.
Children attended appts this week at Temple Street where there was no Orthopaedic Consultant to review them.
Failure after failure
@LeoVaradkar
@DonnellyStephen
both well aware.
Sep 23 meeting with
@LeoVaradkar
outlining our concerns.
We asked for some simple actions to be taken to help our children including funded 2nd opinions for families who wished to avail of same.
This has never happened.
Very hard to witness the waste of money
#Referendum24
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"Our daughter has now lost 45% lung capacity. That's a big shock & to be told it will never be 100% again is so difficult" ....still no date confirmed for surgery.
Hard-working clinical health care staff have to deliver this information to families
#burnout
@scolionetwork
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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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Today children travelled from all over to attend the Spina Bifida MDT at Temple Street.
At their annual review there was no Orthopaedic Consultant present to review the children's spines.
Fear & upset today for all
#scoliosis
#crisis
#backus
@scolionetwork
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Children with disabilities in pain & becoming inoperable
@DonnellyStephen
couldn't be bothered to turn up, ignores their suffering
No recommencement dates on spinal surgeries for Spina Bifida children
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Procedures such as bi-annual bladder Botox can avoid a child wearing incontinence pads.
But they can’t get access to theatres so the procedure doesn’t get done.
It’s mentally a strain for the child/their parents/their compassionate medical team.
Thank you Tom for highlighting
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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Consistently told by
@CHI_Ireland
management that children are triaged based on clinical review.
Devil is in the detail……the clinical reviews aren’t happening!!!
Liam should be in Kerry with his brothers not the victim of a broken system.
@scolionetwork
@SimonHarrisTD
Heading into another weekend no orthopaedic review no urgent surgery as liam is not emergency based on what review ??? Has had tpn and iv's for nutrition already still chokes on his reflux on oxygen the past 2 nights. discussions qbout oral and iv feeds if he cant tolerate feeds
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We have been crystal clear to HSE & Government what is needed to help Harvey and many children like him.
A taskforce.
As Harvey's parents have said treatment abroad is unfortunately not an option 😢 even with crowd funding
@raleighreports
@SBH_PAG
@DonnellyStephen
@LeoVaradkar
@TomClonan
@scolionetwork
@orthokids_irl
@elonmusk
@TheNotoriousMMA
@Liamneeson0101
@NiallOfficial
@mickconlan11
@BarryKeoghan
@TheGNShow
@Michealfas60565
Perhaps if you guys could retweet and highlight this poor totally innocent child's unbelievable struggle it might get the HSE to move & finally help this little guy
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Thinking of Liam and his family
The trotted out statement by
@CHI_Ireland
management that children are triaged based on clinical presentation is rubbish.
Children aren’t being reviewed, aren’t being triaged.
There is no where to escalate concerns except the media
@scolionetwork
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This is neglect, no one can say they weren’t aware, didn’t know.
@SimonHarrisTD
@DonnellyStephen
@BernardGloster
Liam needs all post op assessments completed, review by surgical team, surgery.
He’s in Temple Street- no excuses
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Catherine and Kylie Ann We send you all our love and support tonight we are very grateful for your bravery, we will continue to do everything we can or your beautiful little girl ❤️
@DonnellyStephen
Kylie Ann needs care now
#backus
@scolionetwork
“Love her the way we love her and give her the quality of life she deserves”
Catherine Stuart’s message to government as her daughter Kylie Anne awaits surgery.
#TonightVMTV
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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
The government votes for its own amendment instead of supporting the
@sinnfeinireland
motion on Scoliosis and Spina Bifida tonight.
A motion
@davidcullinane
worked on in conjunction with the families of the children left waiting in pain.
#Scoliosis
#SpinaBifida
#D
áil
Children
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Our thanks to
@TomClonan
for his continuous support another Christmas and no further to treatment or answers as to why our children are allowed to suffer
This Christmas
#Disabled
Irish Children NOT getting Complex Spinal Surgeries for
#Scoliosis
Some Children are at Risk of becoming Inoperable
@scolionetwork
@dianeh116
#Disabled
Irish Children Allowed Deteriorate Medically & Families are Suffering
@HSELive
Task Force & Inquiry NOW
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We wish to clarify
#JustFourMothers
are NOT meeting Mr Nayagam.
Our position & that of the families we represent remain unchanged
We are boycotting any review that reports into
@HSELive
@BernardGloster
railroading ahead despite
@IHCA_IE
& our concerns
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2024 Waiting List Action Plan published today by
@DonnellyStephen
We are a quarter on the way through 2024 and not a one child with Spina Bifida has had spinal surgery.
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Taskforce needed 100%
@CHI_Ireland
have not recommenced Spina Bifida spinal surgeries
No insourcing or outsourcing has occurred, months on
Patients transferred from long lists in Temple St to long lists in Crumlin
Ready to assist in all & anyways with TASK FORCE implementation
I Raised
@orthokids_irl
Scandal in Seanad - 150 Children in Pain & Crisis - One Child Permanently Paralysed Due to Delayed Surgery. Last Night I Learned At Least One Beautiful, Precious Child is at Imminent Risk of Dying on This List
@roinnslainte
ACT NOW - TASK FORCE NOW
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We give a cautious welcome to
@DonnellyStephen
statements tonight in the Dáil that an ambitious plan including funding
@CappaghKids
for Paediatric Orthopaedic care is a top priority. Good news for our
#p
áistíinpain & their brave parents
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Docs abroad would be 'appalled' to see state of Irish scoliosis treatment
@scolionetwork
@TomClonan
@SimonHarrisTD
@DonnellyStephen
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We thank you wholeheartedly on behalf of all our Spina Bifida/Hydro children. Many have been asked to raise their plight & we are grateful their stories are being told.
@MaryLouMcDonald
@davidcullinane
Children can no longer wait in agony. The funding for orthopedic surgeries must be released now.
@HSELive
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Proper urological and bladder management is imperative in children living with spina bifida.
-Kidney failure is the leading cause of premature death in adults living with Spina Bifida
-Some have no Urology care at all under
@CHI_Ireland
they fail them over & over again
In Addition to Scandal of Scoliosis & Spinal Surgery Crisis at
@CHI_Ireland
@HSELive
I Have Been Informed
#Disabled
Children Are NOT Getting Timely Urological Surgery - Impacting Physical, Sexual, Psycho-Sexual, Psychological & Emotional Development. IRELAND’s SHAME
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A determined child & parents who are travelling from Donegal to Dáil Éireann today
@CatherineS58548
This is no an easy feat with a medically complex child
Will
@DonnellyStephen
#backus
or ignore the children living with Spina Bifida and/or Scoliosis in the gallery
@scolionetwork
“We are five years waiting on Kyphectomy complex surgery,” said Jonny.
@SBH_PAG
“Kylie Ann’s back curve is now at 138 degrees.
#scoliosis
#spinabifida
@DonnellyStephen
@SimonHarrisTD
@LeoVaradkar
#BackUs
@davidcullinane
@MaryLouMcDonald
@Kathleensf1
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I’d imagine this morning a few gaps in the diary will have opened up, to meet the parents & non-funded advocacy groups whose children are waiting on scoliosis, urology & orthopaedic intervention.
Time now to re-focus on the pain & suffering of the children is it not?
#backus
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19
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Where there’s a will, there’s a way.
It is crystal clear that there is no will.
Parents & advocacy groups seen as an annoyance.
Liams countdown❤️❤️❤️❤️❤️❤️
Why so long
why so much pain and suffering
why so much deterioration and
why no review and
Why ... absolutely why does this need to be so difficult exhausting heart breaking cruel painful for any child left to wait and suffer in pain
💔💔💚💔💔⚕️😪
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The bravery of children like Noah & his parents is astounding.
100 ° of a curvature is beyond cruel
@DonnellyStephen
@LeoVaradkar
@npsoIRL
@scolionetwork
@OCO_ireland
Noah Quish (6) who somehow still smiles despite the pain of
#scoliosis
. A 100 degree spinal curve, yet he awaits a surgical appointment. The scoliosis surgery waiting list scandal continues everyday for hundreds of kids.
@TomClonan
@SBH_PAG
@UnaKeightley
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100's of children should have by now been sent abroad for surgery
Hear repeatedly same bluff & fluff from
@SimonHarrisTD
@DonnellyStephen
&
@CHI_Ireland
management, options being explored, looking at capacity abroad
Meanwhile, our children's health declines
@scolionetwork
#backus
"It is not rocket science" - President Michael D Higgins says "unacceptable" children surgery wait lists need to be addressed and calls for kids to be sent abroad immediately
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Whilst the big wigs are "exploring possibilities" the reality of years on a waiting list. Harvey's ribs are crushing his lungs.
His case highlighted to
@CHI_Ireland
@DonnellyStephen
when we launched our Paistí in pain campaign Feb 2022. Time is up for exploring, Taskforce needed
The result of being left waiting for his
#scoliosis
surgery. Still no answers from
@CHI_Ireland
Harvey was blue lighted in to hospital today with low oxygen and struggling to breathe.
@CeoHardiman
@DonnellyStephen
@NewstalkFM
@RTEUpfront
@VirginMediaNews
@SBH_PAG
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Paddy aged 15 has spent 4 years on a
@CHI_Ireland
scoliosis waitlist
He has a 100° curve. Family told last year Paddy's surgery would be outsourced to the U.K.
@megzsmurfy
emails asking for details all ignored
All talk, no action for children in pain
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@caulmick
@MaryLouMcDonald
Still Liam is waiting to be seen by a Spinal Orthopaedic Consultant.
@SimonHarrisTD
rinse & repeat same sentiments that he feels for the family,
@pamdennehy
Feelings don't fix scoliosis, surgery does.
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21
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He failed our children now a simple ask of
@SimonHarrisTD
: a commitment to give parents/child medical opinions independent of CHI, unbiased consultations?
We and
@scolionetwork
are waiting on the answer
👏💯
Perhaps those who remember Deputy Harris' term as Health Minister best are families of children with scoliosis, who were promised that they would not wait longer than 4 months for 'life-changing' surgery. A promise disgracefully broken. Again, and again -
@MaryLouMcDonald
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There is no photo as we were inside the Dáil Gallery at the time, no phones allowed 📵
But I want to express our gratitude to
@TomClonan
who we met yesterday, he has vehemently advocated for our children for years & years.
An absolute gentleman.
@scolionetwork
@AccessForAll7
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Plenty of awareness of scoliosis in Ireland but for all the wrong reasons
Early detection & early treatment is vital.
Children wait years for surgeries & suffer pain, loss of lung function, loss of independence 💔
Parents escalate deterioration to
@CHI_Ireland
but no action
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@DonnellyStephen
It is an awful shame our previous multiple meeting requests were not actioned on.
It took 69 Spina Bifida/Hydro parents to publicly display the sorry state of affairs their children are in in to get a date in the diary they are our
#p
áistíinpain
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Thank you so much to
@KennyAKE
for your sensitive report on this. Ava is such a brave girl & her and all the other Spina Bifida/Hydro children should not be enduring this pain. Our beautiful
#p
áistíinpain
New figures show there are up to 56 children with spina bifida waiting for corrective surgery. An advocacy group for the children has called on the Government to provide the resources needed to carry out the operations. | Read:
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And again yesterday at the Spina Bifida MDT
@CHI_Ireland
there was no orthopaedic spinal consultant to review children.
Children with Spina Bifida at high risk of developing scoliosis.
They aren’t being seen so they don’t need to be waitlisted for surgery.
#backus
Today children travelled from all over to attend the Spina Bifida MDT at Temple Street.
At their annual review there was no Orthopaedic Consultant present to review the children's spines.
Fear & upset today for all
#scoliosis
#crisis
#backus
@scolionetwork
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If
@DonnellyStephen
wants to bring around rapid, long-lasting change.
The Taskforce must have the ability to direct
@CHI_Ireland
who have repeatedly failed to manage services & funding
They have not provided timely access to care to our children & a new approach is needed.
Over 300 children face delays in inpatient
#scoliosis
surgery.
Any Taskforce must be independent, statutory, and have independent experts.
The power to direct must be removed from CHI/HSE due to dereliction of duty.
#Taskforce
#ChildrensRights
@DonnellyStephen
@CeoHardiman
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CHI’s spokesperson said patients are being transferred to the care of other consultants “according to clinical priority”
Absolute rubbish how can clinical priority be established when patients are not being seen?
@DonnellyStephen
@scolionetwork
@npsoIRL
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For the 4,000 waiting, there is a two tier system whereby you can pay for a private consultation & therefore get a fast track addition to the surgical wait list.
This targets the most vulnerable.
A child's health should never be contingent on a families' wealth.
June 2018
@DonnellyStephen
met with
@scolionetwork
June 2018 approx 3,500 children were waiting on a 1st appointment. Today there are over 4,000 waiting
@CHI_Ireland
No actions have been taken to improve access for children. Children warehoused on wait lists.
@SimonHarrisTD
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@Billstacey007
@rtenews
@DonnellyStephen
was written to by us in Nov 2021 asking him to execute an iron clad solution for these children, this did not occur and our brave Ava is one of scores of children being effected they are our
#p
áistíinpain
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@gavreilly
Will be reading in the morning but it is unlikely to be surprising to the parents of our
#p
áistíinpain apparently 4 years wait for a child to have a hip put back in, bleeding leg sores & declining kidney function is the norm & not the exception
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Why should another family have to bear their soul, why is Liam subject to this
"This is a form of torture, that genuinely I cannot understand"-
@pamdennehy
We've a spinal management unit, unfit to manage this crisis
@DonnellyStephen
@SimonHarrisTD
@BernardGloster
@scolionetwork
“It’s a form of torture”
13 year old Liam is one patient at the mercy of increasing waiting times for life-altering spinal surgery. The curve in his spine is now over 85 degrees, causing severe pain and making him sicker as time goes on.
His mum Pamela spoke to
@oconnellbrian
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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
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We need a taskforce to manage this crisis.
Our children are suffering immensely.
@LeoVaradkar
passing the buck to
@DonnellyStephen
passing the buck to
@npsoIRL
All the time lists growing longer, children becoming more complex
@scolionetwork
Father tells how son (8) on scoliosis waiting list is suffering pain so bad that ‘he bursts out into tears’
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Delighted to have engagement & support for our campaign from
@MaryLouMcDonald
&
@davidcullinane
@TempleStreetHos
this morning. They care that Connor is in this deplorable condition due to inaction
#maimedbythestate
#p
áistíinpain
We are
@PAG_SB_Hydro
👊💪♿
@LMFMRADIO
did a fantastic interview 👂@ 44mins to hear Garreth speak about his son Connor waiting since 2018 forced to school in a wheelchair when he should be waltzing in that door
@CeoHardiman
?
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Did I miss the bit where
@SimonHarrisTD
advised he as An Taoiseach & former health minister would intervene to help Paddy or Liam????
Couldn't hear over the sniggering on the recording
Reminder, we are talking of children in pain
#backus
@pamdennehy
@megzsmurfy
@scolionetwork
The Taoiseach refuses to correct the Dáil record when asked to do so by
@davidcullinane
FactCheck: Did Sinn Féin really propose spending €500m less on health than the Government?
The claim was made by Taoiseach Simon Harris last week in the Dáil.
#Scoliosis
#D
áil
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There is no system within
@CHI_Ireland
to escalate a dramatic decline in a child’s clinical scoliosis progression
There is no longer a spinal orthopaedic surgeon reviewing children at the MDT Spina Bifida clinic
Don’t see them so they can’t be listed for surgery
@scolionetwork
"A nation almost pushing him over the finish line"
@pamdennehy
talks to
@oconnellbrian
about 13-year-old Liam Dennehy's long-awaited scoliosis surgery on
@TodaywithClaire
this morning.
( Full link at about 18mins in link below )
#scoliosis
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@SimonHarrisTD
all talk about a spinal management unit, yet it is taking TD's bringing up Liam's name on the floor of the Dáil to get your attention.
Dysfunction & all the while vulnerable children suffer
@pamdennehy
@scolionetwork
Spinal Surgery Scandal
Taoiseach, Liam Dennehy is 13-years-old, just over a year-ago his spine started to shift, on his first x-ray his spine was at 35 degrees by November it was 85 degrees. It was evident then, that he needed surgery urgently - five months later, has he not
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@IrishMailSunday
thank you🙏.
Hard enough to be born disabled then punished by the state. ❌ Denied care to a point where they are inoperable.
#the82
spina bifida children still on a list. 18 days & no reply to our letter
#maimedbythestate
#p
áistíinpain
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Motion Tuesday 20th Feb in Dáil Éireann, please ask your local TD are they supporting the motion or are they turning their back on our children too?
@SimonHarrisTD
says he - finished in role of MoH about 4 years ago.
Simon there are children 48months+ waiting on
#scoliosis
surgery in
@CHI_Ireland
You moved to a new portfolio. Children were left behind.
Shame on
@FineGael
@LeoVaradkar
@fiannafailparty
@DonnellyStephen
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It is cruel
But there are solutions ourselves &
@scolionetwork
have advised of what they are those at top level of Government/HSE
The big lads at the top table don’t want to listen to the mammies….. they think they know best & better
History repeating
#backus
#childrenfirst
Case of schoolgirl waiting five years for scoliosis surgery branded 'cruel'
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What can we say about the legend Connor Green. We watched as he interacted with the children, It was evident to all that his focus is & always will be childrens care and overall wellbeing. We are 4ever grateful to him he championed our kids when no one else did
#CappaghKidsCrew
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It was hard to listen to your interview today
@aarondalydub
&
@GillSherratt23
but I am thankful that as parents we have our network of mutual support & understanding.
A family has been left with ‘no option’ but to move abroad for life-saving spinal surgery.
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At the centre of this are vulnerable children and scared families. We have been highlighting our concerns for a long time now with
@scolionetwork
,
@LeoVaradkar
must take control & demand full transparency. We must be included in setting the terms of reference for the next review
The source said Green had shared the innovative surgery he was planning at a meeting with consultants, hospital management and the CEO of Children’s Health Ireland (CHI),Eilísh Hardiman.
@BernardGloster
@DonnellyStephen
@OCO_ireland
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Asking please TD's of all parties and none to support this motion.
The motion allows for a taskforce who can bring real change and deliver for our children.
@scolionetwork
Children deserve better. In 2017 Simon Harris promised that no child would wait over four months for surgery. This was broken & scoliosis-related surgery waiting lists have worsened.
Sinn Féin’s plan for scoliosis and spina bifida waiting lists will come before the Dáil tomorrow
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We explained on the 29th of Sept in person why a taskforce was needed.
It is essential to manage this crisis.
From your meeting
@BernardGloster
&
@CcoHse
with an affected family this week you’ll be well aware of
@CHI_Ireland
inability to manage
@BernardGloster
will you support our ask for a taskforce ? We spoke to you why this is most needed.
Harvey and other children cannot wait for a new hospital to be built or HSE led reviews to be carried out.
They need care today.
We are asking for action and help.
@SBH_PAG
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We are incredibly grateful to
@MaryLouMcDonald
and
@davidcullinane
for engaging, listening and their commitment to championing our children. Their support has been unwaivering. Proven again by visiting
@CappaghKids
to see first hand exactly why this needs funding.
#p
áistíinpain
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@scolionetwork
@DonnellyStephen
@BernardGloster
-Where is the CEO of Children’s Health Ireland
@CeoHardiman
?
-Where are the surgical dates for those teetering on inoperability?
-Where are the promised independent medical opinions
-Where is the Spinal Orthopaedic Consultant who is supposed to see children at the SB MDT?
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We are simply looking for better access and for children to no longer be failed
#backus
"In no other state in the EU would it be deemed to be an anyway practice and nor should it be acceptable within Ireland"
Amanda Santry on the treatment of her son who was diagnosed with spina bifida earlier in life but was waiting so long for surgery that he became inoperable
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There has been no additional Consultant Orthopaedic Surgeons employed
@CHI_Ireland
to complete complex spinal surgeries.
More patients added to more lists
We cannot wait for the New Children’s Hospital.
Time is up
#Taskforce
needed
@LeoVaradkar
@scolionetwork
@DonnellyStephen
"I don't know the details of that particular case" - Taoiseach Leo Varadkar' when asked about a child being permanently paralysed due to lack of spinal surgery, as raised in the Seanad by Senator
@TomClonan
this week.
Question by
@Ben_Scallan
.
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We believe the staff over the PR spin
"In response, a spokeswoman for
@CHI_Ireland
, said it wanted to reassure parents that there is appropriate specialised life support for all babies and children treated in the paediatric intensive care unit"
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@hans_kluge
@AoibhWalsh86
@CHI_Ireland
From 2014
@CHI_Ireland
“Temple Street study confirms services for the 500 children with Spina Bifida in Ireland are grossly under resourced”, unbelievably a decade on situation is worse
Happy to discuss
@hans_kluge
with
@scolionetwork
to discuss facts & data, we don't do PR spin
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A taskforce is needed to manage this crisis, and get our children the surgeries they so desperately need. Ourselves and
@scolionetwork
asked this of
@LeoVaradkar
,
@DonnellyStephen
@BernardGloster
in person on the 29th of September been brushed off since to
@npsoIRL
to handle us
This is truly shocking and shameful. The political system and most especially those in Government who broke promise after promise to these children and their parents should hang their heads in shame. This should not be tolerated.
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There has been no Spinal Orthopaedic surgeon at the Spina Bifida Clinic
@CHI_Ireland
for months
Similar to theme in this article parents have no other option than to present to ED when skin breakdown, weeping wounds, pain gets too much for child.
@DonnellyStephen
@SimonHarrisTD
Proud to share this recently published labor of love from our
#SpinaBifida
team
@ChildrensNatl
!
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For all of 2023 spinal surgeries for children living with Spina Bifida suspended, still no recommencement date.
All in power aware but no action
Hospitals bursting at the seams
Horrific failures by
@CHI_Ireland
Children in pain & suffering
2024 will taskforce be implemented?
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An absolute gem of a candidate for advocacy, disability & inequality. Check the registration list are you eligible to vote 🗳 ?
Today I lodged my Papers Senate Election 22
#tcdseanad
As the only Independent Candidate -with a track record in delivering positive societal change in Gender Based Violence, Disability Rights & Health -Please Vote Tom Clonan No 1 - Check Registration Here
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@IrishMirror
@SimonHarrisTD
taking ownership of a sentence rather than taking ownership of the spinal crisis.
He passes it all off to
@DonnellyStephen
who in turn passes it off to the
@npsoIRL
Meanwhile, the children continue to suffer & the hospital staff work under enormous pressure
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Positive meeting, first of many to bring about real change for our children. The promise of resourced provision
@CappaghKids
for our children and the investment into services
@TempleStreetHos
will hopefully end the suffering of our
#p
áistíinpain
@DonnellyStephen
@CeoHardiman
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Thank you Emma for sharing your lived experience.
You are right not good enough not acceptable.
Delays in care can cause irreversible & permanent damage.
How many children’s names need to be mentioned on the Dáil floor before action?
#scoliosis
#spinabifida
@scolionetwork
I have debated about posting this because I don't know if I'm the right person to talk about the scoliosis surgery waiting lists but I feel like I do need to say something because its not fair on the people who are affected by this. I just took my camera and splurged my thoughts
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Our lived experience of dealing with
@CHI_Ireland
would be of incompetence
Hence we asked
@DonnellyStephen
to ensure taskforce to manage the crisis would be independent of
@CHI_Ireland
Those who’ve let the ship run aground shouldn’t be in-charge of the lifeboats
@scolionetwork
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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No mention of children living with Spina Bifida/Hydro in CHI or HSE statement. Are they to continue to be
#p
áistíinpain we need to wait & see? Abbierose spoke so well our children's voicer as being heard
Children's Health Ireland says it's been told by the HSE that it is to receive an extra €4m in funding every year, with a significant portion of the money going towards orthopaedic surgeries.
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They are in pain
@SimonHarrisTD
It's not what you say, it's what you do that matters
-“Children are suffering pain on a minute-by-minute and day-to-day basis"
@dianeh116
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Obviously not
@SimonHarrisTD
A ridiculous idea!!
They are incompetent in providing our kids care
We specifically asked for taskforce to be independent of
@CHI_Ireland
That commitment hasn’t been given
Taskforce on spinal surgery will not report to CHI
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Promising meeting with
@DonnellyStephen
today.
Anticipating a reduction in waiting times for proactive MDT, Orthopaedic & Urological care for children living with Spina Bifida & Hydrocephalus. Also discussed need for cohesive transitioning pathways from Paeds to Adult services.
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Reporting from the UK 🇬🇧:
"You broke promises on scoliosis wait,
@SimonHarrisTD
told"
You can do right by our children now independent funded opinions, can announce this today, will you?
@scolionetwork
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New law aims to end kids' surgeries wait list pain with 'statutory duty' on HSE
Grateful to
@senatormcdowell
@TomClonan
@GCraugwell
Victor Boyhan
@SenatorKeogan
&
@RonanMullen
for this bill
Statutory duty needed, not false promises
#backus
@scolionetwork
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This is how
@CHI_Ireland
management treat children who have come to harm in their "care"
Hospital staff has said no plans for children affected exist in any substantive form & parents confirm
They are still awaiting a promised independent medical opinion
@DonnellyStephen
HIQA – in mail marked “urgent and confidential” – has confirmed the “significant” patient safety issues caused by the Temple Street Children's Hospital scandal.
CHI is yet to contact at least two of the families affected to inform them of HIQA's letter.
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1️⃣
As well as children living with spina bifida there are many other children predisposed to develop scoliosis
-Children living with Prader Willi Syndrome have approx 70% risk of developing scoliosis
@PWSAI
-Neurofibromatosis
@NfIreland
All deserve timely access to care
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@EamonMelia
The Government paid private hospitals in Ireland €1.6 million for 80 scoliosis operations in 2022.
It is clear no matter what the price the government don’t want to pay, prefer to put children through agony than proactively manage care.
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That is a good question, how many children are waiting?
Where are May monthly figures? Why aren't they published?
Commitment given that figures would be uploaded the 1st week of every month on
No figures for May, another broken commitment.
@RTERadio1
@SimonHarrisTD
Talking of waiting… how many children are still waiting for scoliosis surgery? Surgery you promised would be done within 4 months, back in 2017?
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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.
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Una talks about her son Noah's long wait for scoliosis surgery, the distress of going public
@ClarCahill
of
@scolionetwork
advises that the spinal register has been removed by
@CHI_Ireland
with no explanation
Independent opinions still haven't occurred
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We appreciate the work that has gone into drafting this motion in consultation with us & we look forward to being on the ground to support it. Recognising the importance of families voice is imperative to bringing around real change
@scolionetwork
@davidcullinane
@TomClonan
Children deserve better; Sinn Féin sets out plan for scoliosis waiting list scandal -
@davidcullinane
“Our motion next Tuesday sets out exactly how Sinn Féin, in cooperation with parents, advocates, and clinicians, would implement change.”
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“It starts & ends with the patient better care, earlier care”
@DonnellyStephen
children living with Spina Bifida waiting 5 years for spinal operations 😓, no plans on insourcing surgeons to help, no plans on outsourcing. We need a taskforce, it’s a crisis.
@scolionetwork
@npsoIRL
“It starts and ends with the patient…”
Without the required funding to address the fundamental shortage of acute hospital beds, theatre capacity & other facilities, the challenges in delivering timely care for vulnerable patients will continue to escalate.
@DonnellyStephen
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Brianna is one of 10 children with spina bifida listed as complex for spinal procedures that are impacted by the current CHI postponements and 52 more families who's kids cant avail of treatment
@CappaghKids
are terrified this will have a knock on effect at their access to care
"We shouldn't be on the television begging for help!"
8 year old Brianna Phelan has Spina Bifida and has been waiting three years for an essential surgery. Her mother Catriona explains the situation.
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Look at the trend across
@CHI_Ireland
Waiting lists are increasing, more children waiting 📈
Front line staff doing a fantastic job in old hospitals but the mental toll must be immense.
PR spin does not wash
@DonnellyStephen
&
@SimonHarrisTD
Figures from
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