Michael McDowell (Independent)

I understand it is customary to allow a few words to be spoken on the decision that this House has unanimously taken to pass this legislation. I welcome the Minister, Deputy Carroll MacNeill, and thank her for her interest and co-operation in the whole process. As I indicated on the first day when this Bill was tendered for Second Stage consideration by the House, I am not here to score political points. The cross-party, united approach of this House is to see that work is done and that the commitments, which were doubtless given in good faith but which are difficult to render as concrete reality, are delivered from now on.

The purpose of this legislation is to put in place, in respect of this particular condition, which requires surgical intervention in many but not all cases, a programme and statutory duty for the Health Service Executive to ensure that it resources the process adequately, that it concentrates the resources which are necessary, and that it puts together a system which gives accountability and progress reports. As somebody said, while I am not in favour of artificial measurement processes, something where progress is not measured and reported on and where there is no accountability tends to slip down the order of priority in any political or administrative process. I noticed that today, at the health committee, the chief executive of the Health Service Executive, Bernard Gloster, was asked by my colleague, Senator Clonan, whether he had confidence that the Government's targets for spinal surgery, including spina bifida and scoliosis, would be achieved. He said he had confidence that the new chief executive of Children's Health Ireland, Lucy Nugent, would take this seriously and that that agency would deliver what its commitments amount to.

For the information of this House, there was a request at that committee for the number of patients on waiting lists with spina bifida. It was advised that patients are listed by need as opposed to diagnosis and there was a discussion about the differences between non-complex cases and complex cases, and the care paths, intervention paths and treatment paths required for each condition. Ms Lynam provided an update on scoliosis information. She said an information hub had been launched, a tendering process for educational videos is under way, the waiting list and activities report will be published on Friday, 11 July alongside a progress update from the spinal surgery management unit, that frequently asked questions and service updates about the HIQA report have been published, that the spinal surgery management unit will be presenting at the Irish General Practice Nurses Educational Association conference in September, and that CHI is working with the HSE to improve the healthlink pathway for GP referrals to be made more user-friendly. Those are the plans and they are admirable but I also want to raise with the Minister one point that was discussed at the health committee today, which was insourcing and outsourcing of medical services. It has been suggested to me, for instance, that only two children have been offered, and have accessed, surgery in Great Ormond Street Hospital for Children in recent times and only 14 have travelled to the USA. I am told, and I would like the Minister's response on this, that some CHI at Crumlin consultants are in a position to operate on patients with these conditions at Blackrock Clinic but that this is not a national pathway, with children and consultants at Temple Street not having the same facilities. Will the Minister indicate to the House how the National Treatment Purchase Fund operates in respect of the CHI outsourcing treatment for scoliosis patients since 2017, whether that oversight still exists and who is responsible for it?

I am very mindful of not putting individuals' cases on the record of the House in a way that would identify them, especially when they are underage. I have been contacted by parents who are very frustrated at being left in the dark and uncertain as to their child's situation or at being given the impression their child is about to receive badly needed surgery only to be then told it is not available or will not be delivered. It is very difficult for parents, who are the guardians and protectors of their children's rights, to feel confidence in a system where all the moving parts seem to offer hope only for hope to then recede.

This Bill will go to Dáil Éireann and I hope its Members pass it into law in due course, with whatever amendments they consider necessary. Its purpose is to ensure the missed targets and unrealised ambitions are addressed and that the political commitments that were given, doubtless in good faith, but were not realised are realised through a process of accountability and positive duty imposed on the HSE.

I thank Senators for their support for this measure. I thank the Minister and her Department for accepting the Bill and accepting that accountability and measurable progress are something that, if they are put in place in statute, will result in delivery, explanation as to how delivery will take place and accountability for when delivery does not take place. The beginnings of this issue, which predate the Minister's tenure, were when there was a controversy as to whether funds specially allocated for scoliosis ended up being dissipated elsewhere in the HSE's activities. The Bill is designed to focus attention on this problem and ensure the HSE realises it must address it clearly and unequivocally, set out plans, report on its progress and account for its successes or failures in delivering what are vital medical services, including surgery in some cases, for people whose lives will be blighted by delay and underperformance. I am glad the House has accepted the Bill. It is now open to, and up to, the Members of Dáil Éireann to bring it into law by having it enacted as a measure approved by both Houses.