John McGuinness (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

I understand the importance of the Children's Health Bill 2018 but there are issues I wish to raise about the care of our children and our young population's health. The Department of Health under the Minister, Deputy Harris, has the handy knack of creating a smokescreen such as the introduction of this Bill when there are so many major issues being debated publicly around the provision of health services: 1 million people on waiting lists of one kind or another, the problems around cervical cancer and the availability of new drugs. As all of that is being debated and the controversy continues, the Minister introduces this Bill. Forgive me if I doubt his sincerity about the timeframes involved. He says there are nine sections in the Bill, all of which will be commenced at different stages by ministerial order. One would imagine if the legislation was that urgent it would be specified in the Bill where the legislation is going and there would be less use of ministerial order.

The Minister's reference to the new board shows exactly where the Department and the HSE are. They have approved a new consultative approach to agreeing a brand image, an operational name for the new entity. The naming process to be undertaken by the children' hospital group will be a shortlist of names for the Government's endorsement, prior to announcement. There seems to be more weight given to the creation of a corporate entity and the concern around that than to dealing with the real issues in the care of children's health. The waiting lists for Temple Street, Crumlin and Tallaght hospitals in 2018 is 44,615. Of those 16,862 have been waiting for more than 12 months and 10,304 have been waiting more than 18 months. Outpatients is a disgrace because that waiting list increased by 33% from 33,492 to 44,615. It is absolutely outrageous. The Bill we are debating will deal with something in the future commenced by ministerial order. The date has been shifted time and again. This has been generally on the books for consideration since 2012. The Government promised this hospital in the last term of 2011. The then minister and current Taoiseach promised it for 2019. Now we are being told it will be 2022.

I welcome the hospital because I believe that overall it will improve the healthcare of the youngest in our society but I cannot understand the emphasis on this corporate structure and the turning of a blind eye to what is currently happening in respect of the care of those children. Parents around the country will want to know what is going to happen my child who is on the waiting list between now and 2022 when the Minister says this will be delivered. I would like to see the Minister of State address that issue and give some sort of timeframe to those parents for the care of their children because that is the biggest concern in their lives. I would not say there is a Member in this House who would disagree with prioritising the health of young children. To deprive them of their healthcare, as he is with the waiting list of approximately 16,000, is to deprive them of the quality of life that they are entitled to now and not in 2022. Can the Minister of State address how he will deal with the waiting lists that are currently there, with no waffle, no bluff, just facts? The Minister of State should give us the facts in a given timeframe so those parents can plan for the future healthcare of their child in a different and more positive way. Every child who is sick or who may have a poor health future is of huge concern to their parents and siblings. It has to be dealt with and explained.

I understand this new entity will come under section 38. The Minister states that the chief executive officer will be the Accounting Officer. There has been serious difficulty in the past in dealing with section 38 and section 39 organisations and their accountability to the Committee of Public Accounts. I appeal to the Minister of State to ensure the language in this Bill makes it crystal clear that section 38 and 39 organisations in general are accountable to the Committee of Public Accounts. The Minister of State has to clarify the language, otherwise they will duck and dodge and avoid accountability and transparency, which has been the history of that sector as long as I can remember because the HSE within its own culture believes it is above accountability.

This year, with all that is required to keep it going and that it has spent, the HSE will be €1 billion over budget. That is not an exaggeration. The Department will bluff the figures again and massage them to make them look okay but every single year it has gone from a bad position to a worse position and then to a position of almost not being able to deal with the overrun. If the Minister of State does not get that in hand he is not serving the Department or the health of the country very well and he is allowing it to happen. That is my concern about the accountability of this new structure.

The other concern I have is around the amalgamation of these hospitals into one unit with other services to be provided.

The Minister, in his statement today, stated it provides a "unique opportunity to introduce a new model of care for all paediatric services". What does that mean? How will that new model of care impact on the current waiting lists? They will remain, and stubbornly so, because the Government lacks the vision, humanity and compassion to deal with those lists. Will the Minister of State tell me what that means? What will be the tangible result for the children on those waiting lists? There is an obligation on the Minister of State to explain this. There is an obligation on the Minister for Health, Deputy Harris, to ensure that all of this happens.

Forgive me for using the word "bluff" but the fact of the matter is the Government bluffed the Irish electorate into believing that it was going to rectify the health services. It bluffed them into believing it was going to burn down every quango in the place. Then, in the last term and this term, the Government put further quangos in place without any bother or any understanding that it had given a promise to the people it now represents. Is this management system being put in place just another quango? Could it have been done differently and in a more financially beneficial way and at the same time achieve the same or a better result? I would like to hear what the Minister of State has to say on why that has happened.

In the few minutes I have left, I have been asked to raise directly with the Minister the care of a constituent of mine, Ms Alice Taylor. This young woman, together with her mother, went public about the drug pembrolizumab, which she requires. It has been said to her that it will make a difference to her life and will prolong her life. The cold and inhumane response from the Department of Health and the HSE simply beggars belief. We are dealing with the life of a young woman. I ask the Minister of State to check out this case. I raised it in a parliamentary question recently. Will the Minister of State do something to help prolong the life of this young woman? Will he ensure that the drug she has been advised she should take is approved for her? She is supported by Ms Vicky Phelan, who is one of the bravest women to come from Irish society in recent years. She is now not only dealing with her own case but is advocating for others. She is taking on the system and dealing with the disgraceful cases that have come before the courts and the use of the confidentiality clause.

The second case I want to bring to the attention of the Minister of State is again that of a young person, namely, Isaac Brennan. He also went public outside of the gates here seeking the use of the drug for spinal muscular atrophy. I do not know how any Government, as hard as it could be, could turn a child away from the care and treatment he or she deserves. I know it costs money but one should sit at meetings of the Committee of Public Accounts any week and listen to how the HSE squanders vast sums of money, not on patients but on the administration of a dysfunctional system. How can the Minister say "No" to Alice Taylor or to Isaac Brennan? If he does and if that is his position, thereby abandoning all understanding of humanity and compassion, then he should not be where he is. His interest and his actions should be for the common good. It is a shameful Government that would ignore not just those two cases but also cases that are similar to both of those young people.

I will turn finally to scoliosis. I have watched very young children being abandoned by the State in the context of their care. I have watched their deformed bodies plead with the State to provide the health system and actions required to give them a better quality of life. I have, frankly, been less than impressed by the action of the Government and the HSE. Similar to this hospital and the management system being set up, the HSE has shown no regard for health. It would seem that the general message from the HSE - I hope it will not happen with this hospital - is, like the Department, to bluff and fumble its way through a dysfunctional system.

There is much to be learned on the care of our children from what has happened in the past. There also are many questions that need to be answered in the context of the delivery of what is outlined in this Bill. I do not see much content in the Bill that gives an indication as to what changes are going to be made directly for the care of the children on the waiting list from this day onwards to 2022. I give a general welcome to what the Bill is trying to achieve. I have raised the questions I need to raise with the Minister and I have personalised some of them to specific cases and healthcare. I ask the Minister of State to acknowledge the efforts being made by Members of this House to get acknowledgment of the rights of within our society who are sick and are not receiving the care and attention they deserve within the current health system. The system has failed them and refuses to acknowledge what is now perhaps better practice than before in the care of a specific medical condition.

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