It is very unlikely i will get this page done before launch but can work away in background Una

What do we want

-Set up a register of SB/H children immediately.
​-Rapid Orthopaedic review
​-Review the Medical charts of SB/H children and extrapolate from then what medical care and treatment they require and provide a timeline to parents of when you expect that to occur.e.g. Spina Bifida MDT review, Orthopaedic review, Urological review, Urological scans, Ophthalmological review, Procedures, etc. If there are inconsistencies in this information you can contact the parents directly so they can corroborate. -
-Develop and Standardise Transition Services from paediatrics to adult in Spina Bifida Care. Provide teenage patients a transition plan. Adequately resource the SB/H service across CHI sites
-Give all SB children access to an MDT clinic. stand alone SB MDT could be held for Crumlin patients

Orthopaedics
Rapid Orthopaedic surgical intervention for the Spina Bifida/Hydrocephalus in agony with dislocated hips. This can be achieved by funding cappagh kids
​
  • Improving access to Orthopaedic Care and reducing the current deplorable wait lists. We believe this would drastically improve should funding be made available to Cappagh Hospital through the ..... for their expansion plans. A stand alone setting for orthopaedic care in paediatrics, fully funded would see an increase in up to 400% in surgical management for children across Ireland.
 
  • Transitioning pathways complete






This is just my own rambling thoughs and notes

2022
  • 13th Jan 2022 "Please be assured that we are confident that all patients referred to CHI for outpatient or surgical management are on our waiting lists and that we have the appropriate records regarding their care. This exercise is intended to assist with the specific group of 80 patients highlighted and in order to do that we need to identify this group from within our databases"
  • CHI were asked what was happening with the list of 137 spina bifida children's name in that we gave them in 2019 and was told in 2019 was "being validated at Consultant level" .Advised in Jan 2022 that  "A new register/database for children with Spina Bifida is planned for implementation upon the recruitment of the new service co-ordinator."
2021
  • Corresponded with CHI asking how they wanted the list and asking questions 
  • Received reply from Donnelly 
  • The Minister 16th Dec 2021
  • Wrote to Donnelly on 
2020
  • The Minister is committed Dáil Éireann debate -16th Dec 2020
  • Contact on X date to arrange meeting (in person or virtual)
  • Contacted again on X date to arrange meeting (in person or virtual)
2019
  • 25 October 2019 request from Paediatric Advocacy Group to CHI Temple street for update
  • Asked for meeting again to review progress on:
    - A registry on children with Spina Bifida across the CHI (data given to CHI by SBHI with permission late 2018) in the hope that some stand alone SB MDT could be held for Crumlin patients. Do we have a timeline for implementation?
    -Update on Spina Bifida Coordinator positions in Temple Street and Crumlin
    -Developing and Standardising Transition Services from paediatrics to adult in Spina Bifida Care
  • June  Paediatric Spina Bifida & Hydrocephalus Study Day for Parents & Carers in association with Temple Street Children's Hospital and Spina Bifida Hydrocephalus Ireland (SBHI)
  • Reiterated our grave concerns regarding the lack of  transitional planning for children with Spina Bifida/Hydrocephalus transferring from the CHI group to adult services
  • Gave them the census
2018
  • June 2018 letter from CEO Eilish Hardiman to PAG
  • 16th May wrote to CEO Eilish Hardiman 
  • May 2018 wrote to over 40 consultants and health care providers (list 1, list 2) in Temple street and crumlin as well as ministers see letter here
  • Simon Harris advised he was too busy to meet us
  • May asked to meet Previous TD Dr Katherine Zappone, then Minister for Children and Youth Affairs advised that matter is more appropriate to my colleague, Mr Simon Harris TD, then Minister for Health
  • 10th Jan wrote to Martin Heydon TD in his capacity as as Chairman of the Fine Gael Parliamentary Party to ask you would please organise a meeting with Health Minister Simon Harris. Acknowledgement received. Martin Heydon office contacted again on 19th Jan to ask for update. No response received. 
  • When is this from? click here

2017
  • Oct Wrote to Simon Harris, was too busy to meet


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