Children's Pain Management Advocacy

[Dr Tom Clonan @TomClonan]

Please Share This Far & Wide - Disabled Irish Children in Pain are Dying, Permanently Paralysed & Disfigured - For Lack of Timely Surgical Intervention - Please Share This - It is Emblematic of Ireland’s Shameful Treatment of Disabled - RATIFY #UNCRPD NOW https://t.co/15FlloKmiI

[RARE Ireland @rareireland]

https://t.co/Ozd8d99iFB

[Anne Micks @annedmicks]

@jdibon has been life saver for so many of our EDS patients. Thank you 🙏
@Irish_EDS
@ChildrenPain

[Anne Micks @annedmicks]

May is EDS awareness. Our community has little support for this debilitating condition, in addition to a lack of knowledge by our medical professionals.
@AJsChallenge
@rareireland
@IrishTimes @DonnellyStephen @ChildrenPain
@BernardGloster
@CcoHse

https://t.co/tT6a6LOJ3f

[Children's Pain Management Advocacy @ChildrenPain]

https://t.co/abt9YbqB8P

Well done to Conor, Amy and friends. Conor and Amy have been under CHI'S pain management team for a number of years and are strong advocates in striving for the continuous improvements in our services for children.

[President of Ireland @PresidentIRL]

President Higgins today welcomed members of the Youth Advisory Council of Children's Health Ireland to Áras an Uachtaráin. The young people, who have all been patients themselves, are using their experience to provide advice for improving the care of children in our hospitals

[Children's Pain Management Advocacy @ChildrenPain]

https://t.co/1UEfUgaxJc

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

Dear @danjlevy @Realeugenelevy I have a very special little boy who has been having a very hard time in hospital for the last 3 + months. He has Down syndrome & many medical issues. He is 17 but looks about 6 & has a severe/ profound intellectual disability. He LOVES Peppa pig 1/

[Dublin Fire Brigade @DubFireBrigade]

Work smarter, not harder....

[CHI at Crumlin @CHIatCrumlin]

📢We are seeing almost double the number of patients to our EDs and UCC daily.

If your child does not require emergency or urgent care please consider seeing your GP or Pharmacist.

Expect long waits if emergency/urgent care not needed.

➡️https://t.co/AV0rU7IEnx

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

@cammck77 Well done Ann speaking about the delay to her daughter Miley’s scoliosis surgery. Totally unacceptable in this day & age. The reason @CHIatCrumlin @HSELive are giving is that there are no trachy nurses available for post op care. 🤷‍♀️ @drivetimerte https://t.co/0pJgeebXMT

[Claire Cahill @ClarCahill]

Bed capacity is the reason why surgeries are often cancelled for #scoliosis patients.

This is 5 years after @SimonHarrisTD promised no child would wait longer than 4 months for care.

Still too many children warehoused on wait lists. @DonnellyStephen #mondaynightlive

[Ciara Micks @CiaraMicks]

Chronic Illness’ such as my own (EDS) are often ignored and dismissed because we are “complex” or “difficult”.I am going to start to share with everyone my own experiences and what it’s like to live with a chronic illness #chronicillness #EhlersDanlosSyndrome #POTS #Dysautonomia

[RARE Ireland @rareireland]

On Friday we held our first rare disease conference. This was our first big event & the first conference in Ireland that facilitated rare disease parents, professionals and patient groups.

[22Q11 Ireland @22Q11_Ireland]

The conditions might be different but the cry of the rare parent is the same.
Individually rare collectively common #RareDiseases
🙏 @sujas15 Champion for Irish rare families
@rareireland
#RareParentConf2022

[22Q11 Ireland @22Q11_Ireland]

#RareDad @Lesmart11659095 has done AMAZING work (at huge personal cost) highlighting the need to expand #NBScreening in Ireland. Who's listening?
#GeneTherapy for #MLD
@padraigosull @rareireland
#RareParentConf2022

[Dr Suja Somanadhan @sujas15]

What a wonderful day to celebrate and connect together as a #RareDisease community @rareireland family conference. Thank you everyone involved and a great turnout of families caring for children and young people with #RareDisease great to meet experts by experience

[Dr Paddy Barrett @Paddy_Barrett]

Exercise is probably the single best way to extend lifespan.

You need to exercise like your life depends on it.

Because it does.

Here's why.
👇🧵
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[The Scoliosis Advocacy Network #BackUs @scolionetwork]

Parents are an integral part of a child’s care network in hospital.

Providing supervision & attending to their child’s care needs.

Parents who can’t leave their child’s side for long often go without proper meals.

Child/Family centred care includes parents/Guardians needs.

[Gareth Noble @GarNob]

New figures show 11,600 children are on a waiting list awaiting a speech and language assessment.
We need an urgent HSE strategy with specific timelines to tackle what is a Childrens’s rights scandal @rodericogorman @DonnellyStephen @AnneRabbitte