Jillian van Turnhout (Independent) | Oireachtas source

It is my honour and privilege to second this motion on behalf of the 1,400 children in Ireland with life-limiting conditions, their parents and their families. I am disappointed that the Minister for Health, Deputy Reilly, is not here for the debate but we are in good hands with the Minister of State at the Department, Deputy Kathleen Lynch, and she will report back to the Minister. I welcome the representatives of the Jack and Jill Children's Foundation and the Irish Hospice Foundation who are following the debate in the Visitors Gallery.

I have carried out a three-pronged analysis of the current arrangements for the care of children with life-limiting conditions and I am convinced that what we propose in our motion is child centred, in line with Government policy and makes financial sense. I will now outline my three-pronged analysis.

As we celebrate national children's day this Friday, it is appropriate that I draw from the United Nations Conventions on the Rights of the Child and, in particular, article 9 on separation from parents. Article 9 states: "States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when ... such separation is necessary for the best interests of the child". Unless there is some overriding medical necessity to the contrary, it is in the best interest of a child with a life limiting condition to be cared for at home with his or her parents, siblings and extended family. It is also in the best interest of parents and the family, which are recognised by the Convention on the Rights of the Child as being the ?fundamental group of society and the natural environment for the growth and well-being of all its members and particularly children?, that they be allowed to focus their energy on caring for their sick and dying children at home rather than fighting the system.

We are debating the Thirty-First Amendment of the Constitution (Children) Bill to strengthen children?s rights in Ireland. The motion before us goes to the core of children?s rights and the interplay between parents and children. In the vast majority of cases, parents are the best advocates for their children?s rights. Parents in many different parts of this country are today arguing with local health officials to get minimal supports to provide home nursing care for their children. We only need to look at today's edition of the Evening Herald to see the human story behind what we are debating. A report in this newspaper highlights the case of four month old baby Saoirse, who was born with Treacher Collins syndrome and has spent her entire young life in the Children?s University Hospital, Temple Street. Despite being told by doctors that she can be taken home, she is stuck there indefinitely because the HSE cannot find the funding required to provide a night nurse. Is that the future for baby Saoirse?

Just before we went on holiday in July we received copies of the value for money reports and policy review of disabilities and services.

I had really high hopes about the value of this report for guiding disability services in Ireland into the future, but I am disappointed by its outcome. Ultimately, it is a policy review. There is no number crunching and no scrutiny about on whom and how the money is being spent or the value it is yielding, either directly or indirectly. That said, I wholeheartedly support its emphasis on keeping the child or patient at home and the money following the patient principle, which is echoed in the programme for Government and Palliative Care for Children with Life-Limiting Conditions in Ireland - A National Policy, 2010.

Let us look at the financial analysis. As is stated in the Government's motion, it costs more to provide hospital care. Nobody disputes that. We have never suggested that the services and supports provided in the two settings in question are the same. What we are saying is that children with life-limiting conditions should not by default be cared for in hospital over home, especially when this is not the parents' preference. There are many parents who, with the best interests of their child in mind, want to care for their child at home, and it is in these cases that the State can save a significant amount of money. This is not rocket science. I genuinely find it hard to fathom why we are actually debating this. We are in a terrible recession and the State must save money. We are proposing a way for the State to do so, with the unusual bonus that the knock-on effect is in the best interests of children and parents. However, in 90 minutes the Government might vote on an amendment to defeat this. What are we doing here? It is completely nonsensical.

While we are discussing finances, the Irish Hospice Foundation, through public fund-raising and the generosity of the public, has raised ¤3.5 million to guarantee to fund five of the eight children's outreach nurses required throughout the country. The funding has been available since 2010. However, due to unacceptable delays by the HSE in making these appointments, unrelated to finance, only three of the eight nurses are in place. Therefore, four regions have no children's outreach nurse. This situation must be remedied immediately.

This brings me to the Government's amendment. As I said today on the Order of Business, it was a body blow when I read it. In fact, not to trivialise it, when I read it the character from "Little Britain", Vicky Pollard, sprung to mind: "Yes, but no, but yes, but no, but yes." Is this what we are debating? The Government's amendment is inaccurate. It states that the Government "acknowledges the valuable work being done by many organisations including the Jack and Jill Foundation and the Irish Hospice Foundation as part of wider Health Service Executive funded delivery of services to people with disabilities". However, the Irish Hospice Foundation does not receive any funding from the HSE. It might have projects but in this area it receives zero funding. My colleague, Senator Mary Ann O'Brien, has outlined the minimal funding provided for the Jack and Jill Children's Foundation by the HSE. The Irish Hospice Foundation is funding the only children's palliative medicine consultant in the country. It has provided funding for five of the eight children's outreach nurses, as I have mentioned.

The Government amendment asks us to applaud the HSE but this statement in the amendment is factually incorrect. It is an insult. The amendment fails to acknowledge the financial contribution of the voluntary sector to the provision of these essential services, which is really a testimony to the generosity of the people and, given the nature of these organisations' work, demonstrates clearly just how close this issue is to people's hearts. Senator Mary Ann O'Brien and I have provided conclusive proof that the proposals set out in our motion make sense. The motion is child centred, it is Government policy and makes financial sense. If we do not act on this immediately, we are telling parents and children with life-limiting conditions to sit in a corner and simply wait. The problem is that these children do not have the luxury of time.

Patients, not inputs or money, are the priority. What happens to patients is what really matters. I have often said that regardless of how elegant the design is or how eloquently it is delivered, if it does not improve patient outcomes, it is for naught. The Minister for Health, Deputy James Reilly, said exactly that in the Dáil not ten days ago.