6th September 2017
Earlier in the year I was asked to meet with a group of parents who have children with Spina Bifida and/or Hydrocephalus. We met and discussed a few key issues including: care for children in relevant children’s hospitals; issues around scoliosis care; and, what could be done to achieve real change in these areas.
The meeting was intense and the detail which emerged was very complex. It was clear that any progress on these issues would require a sustained and targeted response, delivered with patience and a strategic focus.
In order to make real progress on this, it was suggested that a core group come together to narrow the focus of advocacy work so that a plan with achievable aims could be established and pursued.
On 5th September 2017 I met with this group and it was agreed that the Parents’ Advocacy Committee would work with the CEO, relevant staff/Board members, affected parents/carers, and all other relevant stakeholders, initially around three main areas:
- Clarification regarding the current and future plans for the paediatric Spina Bifida clinics in Ireland
- A vast improvement for the care of children who have both Spina Bifida and scoliosis
- A commitment for better education to be provided for obstetricians regarding a prognosis of Spina Bifida and/or Hydrocephalus in a developing child
A plan will now be established by the committee so that the appropriate actions can be taken and reflected upon. The responses we receive will be shared by the committee so that all those affected are kept up to date.
This is very much a collaborative process, driven by a group which is intent on realising real change. If you would like to get involved with or contribute towards the work of the Parents’ Advocacy Committee, please contact Amanda Coughlin at:
Phone: 085 143 4953