Update from SBHI’s meeting with Minister Stephen Donnelly – Friday 29th September 2023

We met Minister Donnelly and his officials. The Minister opened the meeting by acknowledging the difficulties of the last few weeks and apologised for all the upset that this has caused to families, and in particular, the children involved. The Minister then asked SBHI to outline the position as our members saw it. We outlined the huge hit in confidence that everyone involved in the care of children with Spina Bifida and/or Hydrocephalus have had in the last weeks, and that is a huge job of work to be done to regain trust – to which the Minister agreed. The Minister asked how SBHI would consider the appropriate way to regain that confidence. We explained that this crisis must be used as a watershed to reshape the future and to ensure a crisis like this will never happen again. We outlined that the issue regarding children’s surgeries presently is symptomatic of a general paucity of services for all people, young and old, with Spina Bifida and/or Hydrocephalus and that this must stop. SBHI outlined to the Minister how we can begin to improve services for people with Spina Bifida and/or Hydrocephalus.

1. Ongoing Review

The review being undertaken by Mr. Nayagam is in our view an evil necessity. This review must encompass all areas of care for our members. It is crucial that Mr. Nayagam meets with SBHI at the beginning of his review to ensure that our members play a fundamental role in both the format of the review, and our hopes for the review’s outcomes. The Minister whole heartedly agreed with this and assured SBHI that this meeting will happen and also said that he will attend that meeting if required.

2. Strategy

We have insisted that an overall strategy for the care of people with Spina Bifida and/or Hydrocephalus, similar to those for cardiac and cancer care, is needed. The Minister queried if we felt such a plan had to be specific to Spina Bifida and/or Hydrocephalus or could encompass all spinal services. We insisted that it must be specific to Spina Bifida and/or Hydrocephalus as we still have the highest rates of incidences in the western world. The Minister acknowledged that a plan is needed and confirmed that even though it will not be completed before the next Government, he fully intends to have a ‘strategy and a solution in place’ during his term in office. He gave assurances that SBHI and its members will be centrally involved in the development of the plan.

3. World Class Service

The Minister has requested SBHI create a model of what an ‘End to End’ level of care should look like for those living with Spina Bifida and/or Hydrocephalus. We welcomed this request and look forward to working with our members to create and present this to him. He is hopeful that this can be used in the planning of care in the future for all living with Spina Bifida and/or Hydrocephalus and is something that can be used as a term of reference for all.

We informed the Minister that to date, no one has engaged with SBHI for input on the new Children’s Hospital and how it can be optimised for children living with Spina Bifida and/or Hydrocephalus. The Minister expressed surprise that this hadn’t already happened and said that he would ensure that this is rectified.

SBHI acknowledges the strong voice of our members, and we want to continue to represent your voice in any further discussion or plans. It is imperative that you let us know how you view the optimum provision of services for you or your loved ones. We are determined to progress these developments as a matter of urgency and would appreciate your contribution by Friday 6th October 2023. You can do so by emailing us on wayforward@sbhi.ie

Following on from the meeting with Minister Donnelly we met with the Taoiseach and his officials. Minister Donnelly, Bernard Gloster-CEO of the HSE, and advocacy groups were also in attendance. We reiterated our recommendations to improve services for people with Spina Bifida and/or Hydrocephalus going forward. The Taoiseach agreed to examine these recommendations in consultation with Minister Donnelly and Bernard Gloster. The Taoiseach and Minister Donnelly will meet with SBHI again within the next few weeks.