The Campaign

​Our main goal is simple; we want to improve the lives of children living with Spina Bifida and/or Hydrocephalus in Ireland by working collaboratively with Children's Health Ireland & the Health Service Executive to achieve better access to care and services.

The main areas we are currently focussing on are:
  • Improving access to Orthopaedic Care and reducing the currently deplorable wait lists. This would hopefully be improved should the plan for expansion at Cappagh Hospital be approved and the requested funding be provided.
  • Improving access to Urology care and aiming to better provide support to the current Urology team so that they will retain within the paediatric team and treat our children. One of the biggest causes of premature death in Adults with Spina Bifida is Renal/Kidney failure and the best way to help prevent that is early access to Urology Care.
  • Implementing access to a full Multidisciplinary Team for all children with Spina Bifida/Hydrocephalus in Ireland. Currently, any child with SB/Hydro born before 2008 does not have access to this as the MDT was only introduced once SB/Hydro care moved from Crumlin Children’s Hospital, over toTemple Street Children’s Hospital. We also hope to push for the wait times for the MDT clinic be reduced; as it stands, most children are being seen in this clinic once every 2 years and we would like to see this moved to annually as it was originally intended.
  • We would like to be provided with a full and comprehensive care plan for all children with Spina Bifida and/or Hydrocephalus. This should outline all relevant routine check ups, scans, ultrasounds etc and the frequency in which they should be done. This would give parents a handbook to reference to ensure their child/ren get the care they need in a timely manner..
  • ​report entitled The Health and Therapy Needs of Children with Spina Bifida in Ireland (Governey et al., 2014)​Spina bifida is the most complex congenital abnormality of the nervous system compatible with long term survival. Given the impact on the neurologic, urologic, and orthopedic systems, a multidisciplinary team approach provides the best care and outcome for children afflicted with this disease.

What do we want

Orthopaedics
Rapid Orthopaedic surgical intervention for the Spina Bifida/Hydrocephalus in agony with dislocated hips. This can be achieved by funding cappagh kids

Urology
In  2018 (I think) the HSE acknowledged that "Access to the appropriate level of specialist urology review for children with spina bifida is currently unacceptable".
X years on & this is still the case, see details of Spina Bifida children in dire need of urgent Urological care here.
Commitment that the staffing level for Urology as outlined in chapter 32 of A National Model of Care for Paediatric Healthcare Services in Ireland by ​the Health Service Executive Paediatric Model of Care chapter 32 

OtherGood info points
https://www.mdpi.com/2673-7272/1/4/28/htm

Frequently Asked Questions, comments-Gillian ideally these would be in an accordion drop down 

○ Why don't you go private or go abroad?
Because we have great doctors skilled nurses here, many of the children take medication, have equipment 
○ Why don't you take a legal case regarding this?
In Ireland you cannot take a group case must be individual. That may provide that family financial compensation but access to adequate medical care is more valuable. What good is money with a non-functioning kidney, inoperable bone etc.
does not help the many other spina bifida children
○ Why didn't the mother's of these children take folic acid?
Many did folic acid reduces the chance of a person being born with Spina Bifida but it is not 100% effective. Are we not finished baimg mothers for 
○ Why don't you just go to A+E and refuse to leave?
CHI Temple Street & CHI Crumlin A+E provide life saving road trafficeaccidents etc. if we all rock up could cause a child to die
○ You should complain to.....
We have, we do
○ How are you funded? 
We aren't we are a group of parents who have educated ourselves on the histirical taught ourselves coding, website development etc.
​

Communication from Children's Health Ireland, Health Minister and Government

CHI/Government phrase
Our response
NTPF
Not suitable for complex kids
doubled capacity from 2 Multidisciplinary(MDT) clinics to 4 MDT outpatient clinics per month
​Asking children to attend for more visits, same staff, same capacity
Value
Value
Department, the HSE and the National Treatment Purchase Fund are also working on a Multi Annual Waiting List Plan to bring waiting lists in line with Sláintecare targets over the coming years.
Our children don't have years
acknowleding that wait times unacceptably long
aware of the impact that this has on children and their families
Repeatedly pursuing this rhetoric is of no actual benefit to the children suffering. Your performance does not align with this statement
​Extra theatre is on the way, new MRI scanner
Value
2022
  • LAUNCH DATE: Due to the repeated & categorical failure by CHI and the HSE to provide appropriate and XXX. To ensure that the xxxxx we display the outcome of their inaction and on our website 
  • The day before LAUNCH DATE Contact CHI requesting a meeting to 
  • The day before LAUNCH DATE Send rebuttal letter back to Stephen Donnelly
  • 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 
  • PAG attended meeting with amanda you did one
  • PAG attended meeting with Una I did one need to get details
  • 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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