Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

There is a long history of abysmal waiting lists and agonising waiting times for children with spina bifida and scoliosis. For years, this has been a recurring issue that Government after Government has failed to address, time after time. In 2017, the then Minister for Health, Deputy Simon Harris, set a target for a maximum wait time of four months for surgery but this has never been met. As of June this year, 287 children are on a waiting list for spinal surgery, 120 of whom children have been waiting more than a year. During this time, the Government ceased a treatment abroad option which helped more than 30 children get access to care.

This information alone is, in itself, shocking. However, we recently found out, primarily through the reporting of The Ditch, that allegations have arisen that in a number of spina bifida-related surgeries carried out at Temple Street Children’s Hospital, unlicensed implants made with non-medical parts were implanted in children. It is alleged that springs which were not meant for surgical use were purchased and subsequently used on at least three young patients. In two cases, these springs had to be removed after causing significant harm to the patients.

Patient safety concerns about the number of repeat operations required on young spina bifida patients and associated rates of reinfection were raised from July 2022 onwards. This eventually resulted in certain surgeries being suspended at Temple Street in November 2022 and in Children’s Health Ireland, CHI, commissioning an internal and an external review. The HSE was advised by CHI that a number of reviews relating to patient safety concerns within the CHI paediatric orthopaedic surgery service were being undertaken and, in August this year, the report was provided to the HSE. Advocates and families report that they have, however, still not seen the full external report, which has been published only in abbreviated form.

In July this year, the HSE took the decision to commission an independent, overarching external review by an international clinical expert. However, advocates and families have reported that they are excluded from devising the terms of reference of this review. They use the analogy of the review being like a bus journey where the HSE is in the driving seat, dictating the destination, while they are told to sit at the back and stay silent. The hands-off approach taken by the Minister has made the situation for these families worse by failing to include them. This has led to the families and their advocates stating that they do not have confidence in the HSE’s review. It is simply a disgrace that children and their families have not been put first throughout this scandal. They are at the centre of this and they should be central to the Government and the HSE’s response. Their voices must be heard and their input must be taken on board. I am glad the Minister and the head of the review are meeting with the families. As I said, their input has to be taken on board and it cannot be just a box-ticking exercise.

All of the reviews must be published in full to provide full clarity and transparency for families. The terms of reference for the independent review must address all of the concerns of the families and advocacy groups, including the years-long failure to address agonising waiting lists. The current review cannot simply focus on the actions of one doctor. There needs to be an investigation regarding clinical governance, not only at Temple Street, but across all hospitals under CHI that have been carrying out these procedures.

It is highly concerning that a consultant managed to purchase and use these devices in the first place. It is equally concerning that CHI and the HSE kept this under wraps. The length of time it took to disclose these events to families and children under the care of this consultant is completely unacceptable. The review must be widened so we can get to the bottom of what happened, how it was allowed to happen and what must be done to ensure it does not happen again. There are still many outstanding issues and questions that must be addressed. Why were families not immediately involved as soon as the Minister became aware of the allegations in order to ensure engagement and transparency? Why were they not made aware of exactly what was happening? Why were they not included in drafting the terms of reference of the current review? If they are to be included now, it has to mean they are fully included. The first external review has not been shared or published and this should be done immediately, although the Minister may have clarified that it has been. All reviews need to be published. When did CHI learn of these experimental surgeries? When did staff first raise concerns? Processes need to be put in place around the procurement of devices. We need to ensure arrangements are in place to ensure proper clinical governance. I do not know how this fell through the gaps for so long and how unauthorised devices were used in operations. When the first adverse incident occurred in July 2022, why did it take until November 2022 to commission an investigation? While this review is proceeding, it is imperative that the Government acts to ensure the children waiting for surgery are not forced to wait even longer.

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