CEO Update Regarding Meeting With Temple Street Children’s Hospital

This afternoon, Friday 22nd of September, our CEO sat down with the Chief Medical Officer of Temple Street Children’s Hospital. We wanted to use this meeting as an opportunity to voice the concerns and questions that our members have and to try gain some clarity on the recent events. The meeting was attended by Chief Medical Officer – Allan Goldman, Dr. Ike Okafor, Sharon Ryan all of CHI at Temple Street and CEO – Gerry Maguire, Deputy CEO – Katy Walsh and Communications and Fundraising Officer – Noelle Jordan all of SBHI. We discussed five main topics that had come from the members feedback and wanted to share with you the responses in a hope that we can help our members get some clarity on the ongoing situation and to be a voice to relay the absolute horror each person in the Spina Bifida Hydrocephalus community feels right now.

1. Use of Unlicensed Medical Devices

We began by firstly raising the issue surrounding the implantation of a non-medical spring into children with Spina Bifida while undergoing spinal surgery. The information that could be provided was limited due to an external review that has been commissioned by the HSE. The hospital outlined that a group from Temple Street attended a conference in Utrecht in 2019 where the use of springs with the aim to reduce the number of surgeries required for certain patients was explored. This method was then adopted by clinicians at Temple Street who ordered bespoke springs from a company online in 2020. The company in question provide multi-industry materials and their management have said that the springs they provided were not manufactured or licensed to be used for surgical purposes. The information regarding how these items were purchased, how they ended up in an operating room and how they came to be used in surgery is still unclear and CHI have said that only the investigation will show that.

CHI at Temple Street only became aware of this issue when the matter was raised via parliamentary questions in Dáil Éireann and Dr. Okafor stated that CHI are ‘not expecting to find these springs in any other patients’. We sincerely hope that this is the case. We also asked if the patients in question had consented and were aware of the adoption of this new technique and use of these unlicensed materials before the surgeries had been carried out – to which we were told that they were unsure, and that the investigation would have to explore that.

2. Scope of Review

SBHI demanded that the scope of the review be widened and that a full review of all surgeries on Spina Bifida patients that have taken place in the last 5 years across all CHI premises be included. We have been assured by Temple Street that this demand will be fed into the review and may well take place. Gerry is also going to put this demand in writing to CHI. The review which has been commissioned by the HSE is due to be undertaken by a surgeon from Liverpool who is external to both CHI and the HSE. When questioned about a timeline for the review we were informed it will take ‘a lot of time and effort’.

3. Patient Referral

Many of the representations we received over the last while from parents were regarding other orthopaedic surgery, outside of spinal. SBHI impressed upon CHI that a wider picture needs to be looked at here and that the stress and worry this crisis has visited upon all our SBHI members in the past few days needs to be addressed. This includes immediate in person appointments to follow up on those concerns with post operative care and waiting times.

CHI have advised that any of our members that are waiting for a referral, appointment, or who have any concerns at this time should get in touch with SBHI and where necessary, we will contact hospital management directly to arrange early follow up. Please contact Gerry Maguire at gmaguire@sbhi.ie.

4. Treatment Abroad

SBHI expressed the concerns that many of our members have around the idea of outsourcing medical procedures abroad to reduce waiting times for much needed surgeries. We emphasised that not only is it logistically and physically impossible for many of our members to travel abroad for surgeries but that there is also too many uncertainties surrounding post operative care once the member returns to Ireland. Therefore, we would consider this a totally unacceptable solution. CHI did mention the ‘Cross Border Initiative’ is still available for all patients and that details can be provided if anyone is interested in exploring that avenue.

5. Outpatients Appointments

Several members have brought it to our attention that outpatient appointments they have attended with CHI have not been led by a clinician and therefore have been a fruitless exercise. Gerry was adamant in highlighting the physical and emotional toll attending these appointments have on children and their parents and that this issue needs to be examined when looking at the ongoing care of members with all CHI premises. CHI assured us that bi-monthly orthopaedic outpatients from October this year will be attended by one of two Orthopaedic surgeons they now have allocated to these clinics.

In conclusion, SBHI emphatically outlined that this crisis must be seen as a point of no return and that the historically unacceptable treatment of those with Spina Bifida and Hydrocephalus cannot continue and will not be accepted any longer. It is going to take a lot to restore the trust that our members have in CHI and it will be a long road. SBHI have outlined that timely and effective communication needs to happen from this point onwards, especially with the parents and families of the children involved.

If you have any concerns in regard to your child’s ongoing treatment with CHI please do not hesitate to contact us.