David Cullinane (Waterford, Sinn Fein) | Oireachtas source

I move:

That Dáil Éireann: notes that, as of 13th February, 2024, there are 327 children listed as waiting on a scoliosis-related surgery with Children's Health Ireland (CHI), as compared to 312 in February 2017;

recalls the commitment given by the then Minister for Health, Simon Harris TD, in March 2017 that no child would wait more than four months for spinal surgery by the end of that year;

further notes that:

— 78 per cent of children are waiting longer than the Sláintecare target time for a paediatric orthopaedic inpatient appointment with CHI, and 81 per cent are waiting longer than the target time for paediatric urology;

— 84 per cent of children are waiting longer than the Sláintecare target time for a paediatric orthopaedic outpatient appointment with CHI, and 72 per cent are waiting longer than the target time for paediatric urology; and

— there is still uncertainty regarding the timeline for the transfer of services to the new Children's Hospital from the various Children's Health Ireland sites, and there are major concerns that a vast majority of children currently waiting for care will age out of paediatrics untreated;

expresses concern that:

— additional resources were made available to CHI to improve paediatric orthopaedic services, but members of the Oireachtas, members of the Government, patient advocates, and clinicians have expressed significant concerns regarding the use, extent, and effectiveness of this funding; and

— spinal surgical activity at CHI has been impacted by the voluntary leave of a consultant following significant concerns regarding return to surgery rates, infection rates, and allegations of inappropriate implantations at CHI Temple Street, the matters of which are subject to numerous reviews;

acknowledges:

— that the position of patient advocates is that existing reviews into CHI paediatric orthopaedic services are insufficient, too narrow in scope, and unlikely to have a satisfactory impact or reveal the true extent of the problem;

— the letter sent by the Minister for Health to patient advocates dated 6th February, 2024, which states that a paediatric spinal surgery unit will be established within Children's Health Ireland, that a lead has been appointed, and that the Minister "would like to convene a Taskforce"; and

— that the position of patient advocates is that a comprehensive, transparent, structured programme of work should be carried out by an independent taskforce, to include a comprehensive examination of the range of services related to scoliosis and spina bifida, care pathways, health care infrastructure, and the related governance of CHI;

considers that the Government has failed to deliver on its health and social care commitments to children, and that children's health care services are not operating at a satisfactory level as evidenced in the Sláintecare waiting list metrics;

demands that these systemic and historical failures are not allowed to continue as children deserve better; and

calls on the Government to:

— establish a taskforce which is independent of CHI management, which will be mandated to listen, engage, and act on the advice and concerns of parents, patient advocates, and clinicians, and include these stakeholders in its reporting process;

— mandate the independent taskforce to conduct a comprehensive review of scoliosis and spina bifida services, including transitional care, post-surgical specialist rehabilitation, and full and appropriate access to community services;

— deliver equitable and quality access to care that is evidence-based and in line with international best practice;

— ensure access to children's health services and treatments is provided on the basis of clinical need and not ability to pay;

— establish a sustainable public model of delivering specialist care for children with scoliosis and/or spina bifida, with increased public provision of care and a reduced reliance on private providers;

— make best use of international service options where clinically appropriate, and provide a wraparound care package for children and their parents/guardians, to include follow-up care post-operatively in Ireland as this is the main barrier for travelling abroad for children who can travel;

— resource and expand the paediatric orthopaedic elective care centre at the National Orthopaedic Hospital Cappagh, including provision of paediatric critical care capacity to support complex surgeries and children deemed clinically complex;

— assess a suitable location for the provision of an elective paediatric urology service and deliver such a service; and

— establish a permanent engagement process with patient advocacy and parent groups with lived experience, such as Spina Bifida Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network and others, at senior management level following the work of the taskforce.

I want to first acknowledge the perseverance of children with complex orthopaedic conditions, and their parents and advocate groups. I welcome the dozens of them who are in the Public Gallery, including many children with spina bifida and scoliosis. I think it is an understatement to say that those children and their families have struggled for many years, and continue to struggle to get access to fair healthcare for their children. Despite setbacks, broken promises, a lack of action, cancellations of surgeries and long waiting lists, they have never given up. The children have not given up, and the parents have not given up because they cannot afford to. They have to continue to advocate for their children.

The experience of these children and their parents has been one of real frustration. I am sure the Minister will accept that. It has been one of poor communication, disjointed services, a lack of pre-operative and post-operative care, and unequal access to care. For those children who cannot get access quickly enough in the public system, what they see are some children who can access Blackrock Clinic and others much more quickly because they can pay for it. That is a real shame on all of us.

One of the people we are joined by here today is T.J., who is 18 years of age and from Tullamore. He spent years on a CHI waiting list. He waited so long that his scoliosis became inoperable. That is the point I am making to the Minister. If T.J. came from a wealthy background that simply would not be the case. Despite all the countless motions and statements from Government Ministers, in the words of the Ombudsman for Children, all these families have got from Government so far was a litany of broken promises. The worst broken promise of all was made by a former Minister for Health, Deputy Simon Harris, who seven years ago made a very public pledge that no child would have to wait longer than four months for surgery. The sad reality is that three quarters of all children are still waiting longer than four months.

When Deputy Simon Harris made that commitment, there were 312 children on scoliosis waiting lists. Today, the number is 327. Surely, the first thing the Minister should do is acknowledge that. He has not done so in the amendment he has put to our motion today.

Despite all of these challenges and despite the frustration, the parents have made very reasonable asks. I have engaged very closely with advocate groups and parents of children over the past number of weeks and months in crafting this motion. One of the biggest problems that came up in all of the reports and the debates we have had - we have had far too many of them in this House, where we talk about it but there is no action coming from it - is the lack of engagement and consultation with families from Children's Health Ireland but also from Government. They want Government to listen to and engage with them but they also want Government to act on the concerns of parents, guardians, advocates and clinicians about the extremely long waiting lists for those who are seeking serious and urgent care.

I acknowledge, in a letter the Minister sent to some of these groups but also in his amendment to his motion, that he talks about a task force. However, the motion I have tabled today sets out the parameters the family want the Minister to agree to for them to have confidence in the integrity of any task force. Trust has broken down, and it is understandable, given the years of frustration. That is understandable. They want to know the Minister is serious about a task force. They want to know the task force will be comprehensive, and that it will involve a comprehensive examination of the full range of issues related to scoliosis and spina bifida, care pathways, healthcare infrastructure and governance issues at Children's Health Ireland. Above all, they want the task force to be independent of Children's Health Ireland. I will repeat that to the Minister again because it is not contained in the amendment he put before the Oireachtas here today. They want it independent of Children's Health Ireland.

I have said it to the Minister already, and this should be no surprise to him or anybody else. We have clearly failed all of these children for far too long. We do not have the pre-operative care services we need. We do not have the post-operative care services we need. We still have children who are waiting in agony for years on end. They were outside the Dáil here today, having travelled from Donegal, the west of Ireland and the south west. They came here, many of them in pain, to tell their story for all of us to do what is right.

I am afraid I cannot support the amendment the Minister has put to our motion here today. He had an opportunity to accept the very reasonable asks that are being made by these parents. I think the Minister's reluctance to do so feeds into a real frustration they have. All I can say to the Minister is that I will never give up on those children and their parents. I want them to be front and centre in how decisions are made and I want a comprehensive plan that once and for all deals with the real challenges those parents and children have.

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