Life-Limiting Health Conditions in Children: Motion

Senator Mary Ann O'Brien

I move:

That Seanad Éireann:

- recognises that there are 1,400 children in Ireland with life-limiting conditions, who have complex needs throughout life and additional needs as they near death, with 350 such child deaths each year;

- commends the tremendous work being done by organisations such as the Jack and Jill Children’s Foundation and the Irish Hospice Foundation on behalf of many of these children by providing nursing care and support, as well as offering some respite to parents and families;

- notes with grave concern that there is no national home nursing care programme or budget for children with life-limiting conditions, which in many instances contravenes the best interests of the child, places an excessive burden on acute services, and imposes a hidden cost on the taxpayer;

- notes that putting in place a dedicated national home nursing care budget for children with life-limiting conditions is in line with the programme for Government commitment to a personal budget model ‘so that people with disabilities or their families have the flexibility to make choices that suit their needs best’, with the policy, Palliative Care for Children with Life-Limiting Conditions in Ireland — A National Policy 2010, and with Ireland’s international obligations under the UN Convention on the Rights of the Child;

- recognises the economic advantage of putting the right supports in place for parents to care for their children with life-limiting conditions at home, as set out in the report, ‘There’s No Place Like Home — A Cost and Outcomes Analysis of Alternative Models of Care for Young Children with Severe Disabilities in Ireland’ 2010, which found that at €147,365 per year for hospital care as compared to €16,422 per child for Jack and Jill home nursing care, the average annual cost for hospital care for a severely disabled child is nine times more expensive, which means, therefore, that the Jack and Jill Children’s Foundation has saved the State up to €235 million since 1997, when multiplied by the 1,600 families supported at the cost of hospital care;

- appreciates that, over the past 15 years, the Jack and Jill Children’s Foundation has raised €36 million privately to fund its nationwide service, while the HSE grant during this same period was €4 million;

- acknowledges the recommendations of the value for money and policy review of disability services in Ireland published July 2012, which emphasises keeping the child-patient at home and the money following the patient principle;

- recalls with approval Ireland’s ratification of the United Nations Convention on the Rights of the Child on 28 September 1992 and welcomes the explicit recognition of the family as the ‘fundamental group of society and the natural environment for the growth and well-being of all its members and particularly children’; and

- maintains, in keeping with Article 9 of the United Nations Convention on the Rights of the Child (Separation from Parents), that where there is no overriding medical necessity to the contrary, it is in the best interests of children with life-limiting conditions to be cared for at home.

Calls on the Minister for Health to:

1. recognise the impact of not having a dedicated budget for a national home nursing care programme for children with life-limiting conditions in place, which results in: inconsistent supports between regions; ad hoc funding for home nursing care for children with life-limiting conditions; tremendous stress and unacceptable pressure on parents, whose energies are diverted to trying to secure resources to support their child at home; and

2. as a matter of urgency to commit to putting in place a national home nursing care programme for children with life-limiting conditions with a dedicated and trackable budget which will immediately result in savings for the State and uphold the best interests of the child.

I stand before the House as a mother who struggled for 24 months, day and night, with my husband Jonathan to nurse a child about whom the State, at the time, took the view that babies cry anyway, they gets lots of colic and some of them are up every night for months. However, when one has a child who is tube fed, has epileptic fits every 20 or 30 minutes and it takes 22 hours per day to get through if one is lucky, that child will break down the family and possibly break up one's marriage. It is an horrific experience.

I also stand before the House as a person. My experience was in 1997 to 1998 and while it was a long time ago, I still have the pain and passion in my heart. I visited a family on Roscommon last week as part of the Jack and Jill Children's Foundation. I went to see the mother and father of a little boy who has reached his fourth birthday and it is time for the HSE to take over the Jack and Jill Children's Foundation nursing hours and look after him. The father has lost his job, is beyond the edge of coping and I am very worried about him. The parents are looking after the little boy as best they can. They are fighting as best they can to give the child a dignified life and look after him at home. It was through all of this and going back to my own experience, when we found out and it became clear to us there was no help in the State, that we founded the Jack and Jill Children's Foundation back in 1998.

The good news is that this motion is very simple, measurable, achievable, realistic and timely given the forthcoming referendum on the rights of the child. I assure the number crunchers that we are not seeking additional money. I really want to stress that point. We know the economy is broke and we want to reallocate resources from one or other of the many budgets the HSE supports and that are meant to support these children. However, we must remember these children are usually not well enough to leave hospital or their homes to go to a special needs developmental school or weekend respite care. It is just not possible. These children get a chest infection at a drop of a hat. An organisation such as the Brothers of Charity, for example, is just not geared for such children. The little boy in Roscommon managed to attend his Brothers of Charity service on three days out of most of last year, which is not much good.

I want to ring-fence the existing budget to underpin a national home nursing care service that would save millions of euro every year by keeping children out of crowded and expensive hospital beds that are meant for acute patients. I am talking about using our existing budget in a more cost-effective way while recognising and serving the needs of our young vulnerable patients. Again, I remind my fellow Senators that hospital care is eight to nine times more expensive than home care. We know we are broke and need to save money. This is a great way if we can drive the HSE forward to save this money.

The 1,400 children with life-limiting conditions and their families are depending on us to prioritise and fund a national home nursing care programme by ring-fencing the money. We are not talking about a lot of money according to Professor Charles Normand of Trinity College Dublin - in or around €15 million. This is about putting the patient – the child - and the health needs of that child first. I believe that when the Minister does the cost-benefit analysis, he will surely know that this is the right thing to do. Sleep-deprived parents throughout the country are being forced into battle to keep their children at home. They are forced as a last resort to take their stories to the media, something no family wants to do. Nurses are being strangled by red tape, wasting their nursing time and skills making telephone calls and writing letters lobbying on behalf of families. There are too many families on the brink of not coping and I have been there. I would like those present to imagine what it is like when one's child is having a fit every hour and being fed through a tube and the tube comes out. It is unimaginable.

As a businesswoman, I know that if something does not have a budget, it does not happen, no matter how much lip service it is given. To give them their due, up to now HSE personnel have robbed Peter to pay Paul when it comes to finding the budget for home care plans for precious, vulnerable children. They have dipped into geriatric budgets or equipment budgets or wherever they could find it. However, as the budget noose has been tightened increasingly within the battered and broken HSE system, the so-called no-budget barrier is being shoved in the faces of desperate parents, and that is what was shoved in the face of the parents in Roscommon last week. The mother and father started to cry quietly in front of me. The HSE and Brothers of Charity personnel looked at me and I looked at them and we put our hands up and thought what we could do.

There are brilliant people in the HSE but it is up to us to make the difficult change to reallocate and ring-fence budgets.

The inconsistencies of practices around the country are shocking. It appears that the HSE in Cork can ring-fence budgets for children but it cannot do so in Roscommon and Tipperary. A child born with severe brain damage and in need of 24-7 care has a much better chance of being nursed at home if he or she is born in Donegal, Louth, Cavan or Dublin. I gathered that information by telephoning all the Jack and Jill Children's Foundation nurses, as well as several special liaison hospice nurses in the last two days to ask them some simple questions. The HSE's inability to take over care plans of children under the wing of the Jack and Jill Children's Foundation is an alarming trend. As the foundation never wanted to take on more than it could deal with, we care for children under the age of four. Some 69 of our children will soon reach that age. It is approximately a year since the HSE was informed of this yet it states it simply does not have the budget. However, we know the budget is available.

The little boy in Roscommon has just turned four years old. He receives ten precious hours from the HSE and the Jack and Jill Children's Foundation has been giving him 12 hours. On a good night this little boy wakes on three occasions but on a bad night neither he nor his parents get any sleep. He is a perfect test case for us to try to put home care nursing in place. The Brothers of Charity, which also attended the meeting about the Roscommon baby, do amazing work but many of the main pillars in the disability group are getting enormous sums of money. The Brothers of Charity has a budget of €164 million. Could we not take €1.8 million? Could I even mention the unmentionable? The HSE gives Dóchas and some other foreign aid charities a couple of million euro. Could we not take €250,000 from one, €200,000 from another? We are broke and we are speaking about the most vulnerable, sick and desperate children, as well as their parents and siblings. The family is affected and breaks down.

It is ironic that we still do not have a budget for the vital service of home care for severely disabled children even though they have the right to that service under the UN Convention on the Rights of the Child, which was ratified by Ireland on 28 September 1992. My colleague, Senator van Turnhout, will expand on this argument.

We must recognise the economic advantage of putting the right supports in place for parents to care for their sick children at home. This argument is set out in the 2010 report, No Place Like Home, which conducted a cost and outcome analysis of alternative models of care for young children with severe disabilities in Ireland. The report found that hospital care for a severely disabled child cost €147,000 per year compared to approximately €18,000 for home nursing care by the Jack and Jill Children's Foundation. I am not here to speak solely about the Jack and Jill Children's Foundation but we happen to have a system which allows me to outline our figures. It is eight to nine times more expensive to put a child in hospital. There will be the occasional child who is in such need of intensive care that the family would prefer him or her to die in a hospice environment but 98% of families want to keep their children at home in his or her own room and around familiar smells, colours and toys. We have to get back to business. We do not have the money but we know it is eight to nine times cheaper.

A dedicated national home nursing care budget for children is in line with the commitment in the programme for Government to a personal budget model. As I have stated previously, the concept of client focused services does not appear to be part of the culture of the HSE. It does not seem willing to embrace such a model despite the best efforts of the Minister for Health to implement it. Approximately €1.5 billion is spent in the area of disability but the people affected have no say over the services they receive, where they receive them or who provides them. At the end of the day disabled people are consumers like the rest of us, and they deserve the power of choice.

The good news is that what we seek in this motion is achievable. A little bit of change and manoeuvring will be required but we can achieve our objective by working together as a group. Individualised funding is the Minister's vision, with a focus on giving the individual the right to support the life he or she wants to lead. In a child's case, the parent gives the child a little voice that says, "Please keep me at home where I can be surrounded by my family and friends". We should not speak about out of home respite care when a child does not travel comfortably, or pre-school services when he or she is not well enough to attend developmental pre-school. Give children a choice by giving their parents the funding for and choice of home care plans. Give them some dignity and respect. They are also citizens.

The decision is up to my fellow Senators. Will they shrug their shoulders and leave this evening saying the situation is terrible and that while acknowledging I was passionate about the subject there is nothing to be done about it, or will we all grab this opportunity to carefully examine the cost-benefit analysis and urge the Government to make this investment? We could thereby achieve the great goal of putting in place a national home nursing programme for the 1,400 children in Ireland with life limiting conditions, with a dedicated and trackable budget. That would be a smart move which would result in savings for the State and uphold the best interests and rights of children. The timing is right for this initiative, and it is realistic and measurable.

Senator Jillian van Turnhout

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.

Senator Imelda Henry

I move amendment No. 1:

To delete all words after ‘‘Seanad Éireann’’ and substitute the following:

‘‘acknowledges the valuable work being done by many organisations, including the Jack and Jill Children's Foundation and the Irish Hospice Foundation as part of wider Health Service Executive funded delivery of services to people with disabilities;

welcomes progress so far under Palliative Care for Children with Life Limiting Conditions in Ireland — A National Policy (2009);

commends developments beyond palliative care needs by both statutory and non-statutory agencies to progress services generally for such children;

notes the complex and multi-disciplinary nature of such services, which has placed emphasis on developing home-based supports, and respite care, on a more uniform basis nationally for such children and their families;

notes ongoing discussions between the Health Service Executive and relevant non-statutory organisations to further promote where possible services for children with life-limiting conditions;

notes that the Health Service Executive has consistently funded the Jack and Jill Children's Foundation, subject only to the general estimates reductions applied evenly to all agencies in the disability and palliative care sectors in recent years;

notes that the recommendations contained in the value for money and policy review of disability services relate to the full range of residential, day, respite and other support services delivered by and on behalf of the Health Service Executive;

recognises that the preference for keeping the child-client at home must take account of the availability of resources across all types of service delivery funded under the disability and palliative care programmes;

acknowledges the difference in the cost of hospital versus home-based services, but points out that the costs relating to a 24-hour acute medical service will always show an unfavourable cost when compared to a home-based support service, which is entirely different to the type of service provided to families for a specified number of hours;

notes that the Minister for Health and the Minister for Children and Youth Affairs are satisfied that the broad principles as outlined in the United Nations Convention on the rights of the child in terms of the provision of appropriate health services to children are reflected in current policies being pursued by the Health Service Executive;

acknowledges the Minister for Health on the various services in place for children with life-limiting conditions, ranging from acute hospital-based to home-care supports, the progress that has been made or is planned in line with the programme for Government and under health reforms, for such care needs, and the need to maximise service delivery in this area in line with resource availability;

acknowledges, however, that recent economic circumstances will regrettably have a bearing in terms of the availability of wider resources to ensure the expansion of that provision and best possible outcomes for children, and notes that within this context, the Health Service Executive is working to ensure that the best possible level of service for children and young people are maintained; and

notes that the Government is embarking on a major reform programme for the health system, the aim of which is to deliver a single-tier health system, supported by universal health insurance, and guided by the principle of money follows the patient and care for all persons, including children with life-limiting conditions, as close to the home as possible, within available resources.’’.

I welcome the Minister and also take the opportunity to welcome Jonathan Irwin from the Jack and Jill Children's Foundation. I commend the work the foundation does in caring for children with life-limiting conditions. Without the support of this organisation life would be very difficult for the children and families concerned.

I have no problem supporting the ethos of this motion. It is a pity that during the good times, when we had money, previous Governments did not address this issue. Many children availing of services provided by the Jack and Jill Children's Foundation also avail of other specialist health supports and disability services, both hospital based and community based. The aim of the HSE is to ensure that all children with life-limiting conditions would receive services on an equitable basis and through a standardised approach. A paediatric palliative care consultant was appointed in May 2011 and is based in Our Lady's Children's Hospital, Crumlin, with additional sessions in the Coombe hospital. Four nursing posts have been filled in Temple Street Children's University Hospital, Our Lady of Lourdes Hospital, Drogheda, Waterford Regional Hospital and Limerick Regional Hospital. Pending approval from the HSE control group on recruitment, additional nurses will be placed in Galway, Cork, Crumlin and Mullingar.

A needs assessment report, Respite Services for Children with Life-limiting Conditions and their Families, was undertaken in Dublin, mid-Leinster and Dublin North East in 2012. It is hoped to have the needs assessment for HSE South and West completed before the end of 2012. Funding for paediatric palliative care is incorporated in the overall palliative care provision in the agreed HSE service plan. A total of €78 million was allocated this year for palliative care. As we are now in a situation where we must make cuts of €3.5 billion everywhere, it will be difficult to expand the health budget.

Palliative care for children is delivered differently from the palliative care services for adults. Many children requiring palliative care have life-limiting conditions, as opposed to advanced terminal conditions, and children may survive for many years with these life-limiting conditions. Where children need palliative care it is usually provided at home. In the home, the family is supported by their family doctor, public health nurse and the specialist palliative care team, where it is available. The medical and nursing care of children in hospital is the responsibility of paediatric trained medical and nursing staff, with support from the specialist palliative care service.

A national policy was launched in March 2010. Ultimately, this policy aims to ensure that all children with life-limiting conditions will have the choice and opportunity to be cared for at home. In line with the key findings of the palliative care needs assessment for children, this policy prioritises community-based care for children who need palliative care. I commend the Minister for the various services in place for children with life-limiting conditions, ranging from acute hospital based to home care supports. Progress has been made or is planned for such care needs, in line with the programme for Government and under health reforms.

The Government has embarked on a major reform programme for the health system, the aim of which is to deliver a single tier health system supported by universal health insurance and guided by the principle that money follows the patient and providing care for all persons, including children with life-limiting conditions, as close to the home as possible, within available resources. The HSE remains committed to working with all voluntary disability service providers, including the Jack and Jill Children's Foundation, to ensure that all of the resources available for specialist disability services are used in the most efficient and effective manner possible. The Minister for Health was in the Chamber today and after hearing his lengthy speech I have the utmost trust and faith in him in the very difficult job he must undertake in the next few years.

We are committed to children's issues. We have set a date for the children's rights referendum, we are going to build a new children's hospital and we are committed to supporting agencies that deal with children. Children's rights are at the forefront in this House. We are lucky to have Senators Mary Ann O'Brien and Jillian van Turnout, who have an in-depth knowledge of and deep commitment to children's issues. I hope we will be in a position to revisit this issue again very soon.

Senator Terry Leyden

I express my admiration for Senators Mary Ann O'Brien and Jillian van Turnhout who tabled this well formulated motion. They have a brought a new dimension to the Seanad and it is commendable that they tabled a motion of this nature.

I welcome the Minister of State, Deputy Kathleen Lynch.

I also welcome the representatives from the Irish Hospice Foundation and Mr. Jonathan Irwin of the Jack and Jill Children's Foundation, who played such a role in setting up that organisation because of the needs of the time and which has proved to be very satisfactory.

I was particularly struck by the details of the case in Roscommon outlined by Senator Mary Ann O'Brien. She recognised the work of the Brothers of Charity and the organisation County Roscommon Association for People with Special Needs. This is a very important funding organisation that was established some years ago and it invited the Brothers of Charity to take on the running of services in County Roscommon. They have proved to be very successful in that, providing extremely good conditions for their clients over those years. I commend them for their work and hope that Senator Mary Ann O'Brien will be successful in the case she outlined of the four year old boy in County Roscommon who is need of particular care, and not in an institution. I note the hours given by the HSE and the Jack and Jill Children's Foundation, which are welcome, although not adequate in the circumstances.

I am surprised the Government tabled an amendment to the motion; I thought the motion would be put forward as a recommendation. This is not legislation; it is a very good recommendation that outlines in detail the benefits of care in the home provided by families. The amendment patronises the organisation and is not very helpful. The line is that there is nothing that can be done. I appeal to the Minister of State because I am sure she would have the power to allow the motion to be a recommendation to the Government, "that the House calls upon the Minister for Health". It will not compel him or make any difference to the legal situation but it would be more helpful than accepting the amended motion outlining the usual stuff that comes in from the Department.

I was in that Department for a number of years and understand the situation in Hawkins House. It was not the most pleasant ministerial experience I ever had; I was glad to get out of it. I made a case to former Taoiseach Charlie Haughey when he was drawing up a new Government, telling him I wanted to get out of there. He asked me how I knew he would give me any job but I replied I wanted to get out of the Department of Health because it is a very difficult Department, with a crisis a day. The delegation of responsibility is very important and there is a tendency in the Department for the line Minister to take control of everything but there must be a balancing of power because this is a very big Department and there has been a tradition in it of difficulties in this regard. That was certainly highlighted by the Minister of State, Deputy Shortall. When Ministers of State are delegated responsibilities, there should be a clear line of demarcation.

The Fianna Fáil Members see this motion as children's rights in action and it is particularly timely in the context of the current referendum proposal. We support the concept that the State should dedicate money to set up a national programme to provide home nursing care for terminally ill children. Such a measure would be cost effective because it is estimated to be nine times more expensive to keep a child in hospital than at home. That has been clearly outlined in the statement here. It would also be consistent with the Government's own stated policy on caring for people in their own homes.

The sad reality is that approximately 490 children die in Ireland every year and an estimated 1,100 are living with a life-limiting condition. Of the 350 children who die as a result of those conditions, the majority pass away in the first year of life. The main difference between adult and paediatric palliative care is the vast majority of adults are cancer patients while children can be born with a number of congenital diseases and abnormalities that are known as life-limiting conditions. This means the child is not expected to survive to adulthood, with some only surviving for a number of weeks or months after birth. Children with palliative care needs in Ireland receive excellent treatment in paediatric hospitals but an acute setting is not always the most appropriate place for some of these children, as Senator O'Brien outlined from personal experience. She could bring that to the family in Roscommon. They want their child to come home and it is the least that could be offered to them in this regard. It is an experience no parent would ever wish for but the best one in the circumstances.

I appeal again for consensus and that the Minister of State accept the principle in the motion. If there is a vote, however, we will vote against the amendment and for the motion.

Senator Aideen Hayden

I second the Government amendment. The issue before us concerns the care of children with life-limiting conditions, particularly those in end of life scenarios, and I thank my Seanad colleagues for bringing this matter before us. I thank the Jack and Jill Children's Foundation and the Irish Hospice Foundation, which have played a major role in highlighting the needs of children with life-limiting conditions, particularly children who are approaching the end of life. No one in this Chamber is unaware of the grief felt by a parent who has lost a child or who does not understand the fear we all face as parents of losing a child. When my children were small, I would go into their bedroom at night just to hear them breathing and make sure they were still alive. I know the anxiety of parents facing life with a child who is terminally ill, when they fear any local children getting the measles, flu or a temperature.

We are being asked today, however, to decide if what we do is good enough for children who face the end of life. This is not about the Jack and Jill Children's Foundation or the Irish Hospice Foundation, but about what our national health system is doing to support parents and children with life-limiting conditions. One of the difficulties I have is with the NGO model is knowing where the charitable model ends and State responsibility begins. I note in the background documentation I obtained for this debate that families supported by the Jack and Jill Children's Foundation were worried about what would happen to their support structure once their children reached four years of age and beyond. Children with life-threatening illnesses do not cease to have those needs when they go beyond four, seven, eight or even 17 years.

While we can recognise the contribution of a particular group, this issue goes beyond children with severe disabilities and extends to children with cancer and other long-term acute illnesses. In reality what has happened here is that the NGO has stepped into the breach and done what the health system should have been doing with little State support when overall costs are taken into account. The Jack and Jill Children's Foundation raised €35 million in charitable donations as against €4.5 million it received from the HSE since 1997. As Senator van Turnhout said, in the implementation of Government policy on palliative care for children with life-limiting conditions, phase one calls for the appointment of a children's palliative care consultant and eight outreach nurses to support care at home, of which the cost of the consultant post is to be fully funded for five years and five of the nursing positions for three years by the Irish Hospice Foundation. The HSE is to fund only three of the nursing positions. It is clear that while official documents talk about a spirit of partnership, public generosity allows the State to abdicate its obligations.

One may argue about the methodologies but the reality is clear. It is far better for a child to be cared for in his or her own home for as long as possible in most circumstances. The evidence also is clear that it is cheaper for the public purse. For example, the report published in 2010, There’s No Place Like Home – A Cost and Outcomes Analysis of Alternative Models of Care for Young Children with Severe Disabilities in Ireland, estimates there is a saving to the public purse of approximately €120,000 if a child is cared for at home. Obviously, there is some disagreement with this figure and the HSE estimates that a service similar to that provided by the Jack and Jill Children's foundation would cost €23 per hour if delivered through the executive. What really is important is what is in the best interests of the child, his or her immediate family and, in particular, a group that is often forgotten, namely, the siblings.

Many NGOs save the State money and, unfortunately, that is the nature of the job. What is also unfortunate is that where an NGO has demonstrated the need for a service, the State does not act to mainstream that service, being content instead to let the voluntary effort lead the way. The role for voluntary effort is to show by example in setting up new services and exploring new ways of meeting public needs. The Irish Hospice Foundation and the Jack and Jill Children's Foundation have done this but as a society, we must go further as the charitable model is not enough. Children deserve to live and die with their families around them and this service should be fully funded through public taxation and, while I mean no disrespect by this comment, not by recycling mobile phones or drinking coffee.

I support the Government amendment because I believe a properly funded public health system is what is needed, not a piecemeal system that addresses particular needs at particular times. Again, I mean no disrespect to Senator Mary Ann O'Brien when I state that social solidarity is not helped by proposing the removal of funding from one organisation dealing with overseas funding, such as Dóchas, in favour of supporting vulnerable children. The bottom line is that services to children, vulnerable young people and all of society should be properly funded by public taxes and any support to the charitable model should be for extras, rather than for fundamentals within the system.

Senator Sean D. Barrett

I support the motion and regret the terms of the Government amendment to it. Less than a couple of hours ago, the Minister for Health was impressing Members hugely in this Chamber. It was a great debate in which he thanked Members, they thanked him and a spirit of camaraderie, friendship and so on obtained. He proposed to abolish the Health Service Executive, is working to this end and Members wished him the best of luck.

However, the Government amendment to the motion mentions the Health Service Executive in its first, fifth, seventh and 12th paragraphs. Obviously, whoever wrote this amendment did not listen in to what the Minister, Deputy Reilly, was saying. The many issues the Minister will address include the weakness of financial controls in the health service, which he is reforming. For example, I refer to those people who are called financial officers and accountants who have no qualifications. He is working on such issues and is not relying on the continuation of the Health Service Executive to deliver the health service. Consequently, I do not know the reason the Government amendment relies on it so heavily to dispute the motion tabled by Senators Mary Ann O'Brien and van Turnhout.

I commend the Minister of State for the manner in which she always has thought outside the box when in this Chamber because this is an area Members agree unanimously requires huge reform. A Government economic service is needed for a range of things to ascertain what these numbers look like. As was mentioned, some reports have no numbers and it is necessary to establish the real numbers. This applies regardless of the issue. One might be considering water charges, what the cost of the meter might be or whether it is worth charging some people at all given one would save so little water. Alternatively, one might be ascertaining what is the basis of the household charge, given so many houses are in negative equity, there are so many ghost estates nationwide and so many people remain in houses because banks are trying to hold up the prices. Consequently, such an economic service would be useful throughout the material introduced to this House by the Government. I gather that the Minister for Public Expenditure and Reform, Deputy Howlin, who also came into the House today, is considering that.

There is a lot of literature to the effect that people should not be in hospital. As the motion noted, it is extremely expensive and unhealthy and there is an entire literature on iatrogenic diseases. As stated previously, it weakens the relationship between parents and their children. Members also have referred to the findings of the Milliman report that Irish society is hospital-fixated. The aforementioned report on VHI found we keep people in hospital for 10.6 days, whereas best practice worldwide would be 3.7 days. This is eating up money and probably is not doing people much good in terms of health services. If these children can be minded, looked after and loved by their parents, as this motion suggests, let us run with that. Before dealing with some other points, I suggest Members should consider whether the motion tabled by their colleagues meets the spirit of the comments made earlier today by the Minister for Health. I think it does and they should not be sent away rebuked on the basis of a policy that is already changing in the Minister's mind.

When this issue was discussed briefly on the Order of Business, the wish on all sides of the House was to avoid running the debate as a Punch and Judy show after which the newspapers could report, "ashen faced Minister left the House on foot of Government defeat". Members are not doing this and no one wants to do that. They seek to improve policy in a country where so much has gone wrong. While Friday was mentioned as being international children's day, it also will be the fourth anniversary of when bankers walked out of the Department of Finance with €64 billion in their pockets. This is the situation with which Members are trying to deal.

During the health debate earlier, Members also pointed out the fastest growing category since 1980, I put the precise numbers on record during that debate, has been the growth of bureaucracy. It has been growing far faster than the number of staff as a whole. This is money that is wasted and which hopefully will be put towards patients in the new Department of Health. The Minister strongly expressed the view that patients be put first. While I support and will be voting for the motion, I echo the point made by Senator Leyden and ask the Government to take on board the sentiments, rather than hitting the motion for six out of the Chamber. Some compromise should be found because all Members are agreed that such children in very great need should be looked after by society. They are much more deserving candidates than running up huge hospital bills or than the bankers who took €64 billion from us four years ago or than the rapid expansion of the bureaucracy of the Irish health service. Given her performances in this Chamber and the spirit she brings to debates, I cannot envisage how the Minister of State would vote for the Government amendment.

Senator Colm Burke

I welcome the Minister of State to the House. I am a little surprised as to how business is conducted in this House in respect of certain matters. While I may be stepping on toes by making this point, I am not at all sure that tabling an amendment is the best way to deal with this matter. I am a little surprised that some form of joint agreement on the matter has not been reached in this House. I make no apologies for making this point because this is a highly emotive issue. Those involved in it are hugely dedicated and committed to giving support to their children when the State has been unable to provide that support.

This situation has persisted for many years as if one considers the background, the national advisory committee on palliative care was established back in 2001 and an assessment was carried out between the Irish Hospice Foundation and the Department of Health and Children back in 2005. However, seven years later, we are still trying to put together the long-term direction. While there must be compromise on all aspects, particularly at present given the financial constraints, I believe we must be somewhat more proactive in respect of how we deal with such issues. This pertains to an organisation that has raised more than €35 million. No one is entitled to criticise it for the service it has provided over many years in giving support to families. The question now is how one can assist to make sure this is not considered on a year-to-year basis but in respect of where one wants to be in five years time when dealing with this issue.

While I accept there are budgetary constraints, we need long-term planning to deal with this very difficult issue. We already had a long discussion today on the Department's budgetary constraints during which I mentioned that in 2011 an amount equivalent to all the income tax collected went into health care. How do we now fit this area into existing budgets? While people might say I am stepping outside the Government line in this, it is an area that needs more thought. We also need to give more thought to the proposal before the House tonight. The Minister of State might have something constructive to say as she always does when she comes to the House. Once we have listened to her we might work out how best to deal with the motion and what is required in order to put in place a long-term structured approach to the problem.

The earlier speakers, including the proposer and seconder of the motion have outlined the difficulties parents face when dealing with this problem, and the support and commitment they must give. People are spending a considerable amount of time on fund-raising to provide those services. We need more long-term planning in the area. It is disappointing that it has taken 11 years to reach this stage. Do we need to wait another 11 years or can we do something more positive from now on despite the existing budgetary restrictions? In replying to the motion, I ask the Minister of State to deal with not just the here and now but also how we can deal with this in a long-term way. We need to ask where we want to be in five years on the issue. Will we have another similar debate in five years or can we put something concrete and definite in place?

Senator Fiach Mac Conghail

I welcome the Minister of State. I have always been impressed with her engagement with us whenever we have brought a motion. I like the Seanad and participating in its debates. Senator Zappone spoke on radio this morning and outlined ways that the Seanad could and should improve its business. The Independent Senators put considerable time into preparing our motions. The Taoiseach has bestowed responsibility upon us and it is part of our democratic duty to bring issues to the floor of the Seanad for discussion. This allows us to tease out with the Minister present the intricacies and nuances, but also to share stories. To my shame I was not aware of the work of all these charities, including the Jack and Jill Children's Foundation and the Irish Hospice Foundation. It allows me to gain more knowledge as a citizen but also as a parliamentarian and legislator to try to improve my own understanding and how I might contribute better to the work in the Seanad.

We have heard very moving stories about the family in Roscommon and Senator Mary Ann O'Brien's passionate contribution in moving the motion. I fully agree with Senator Hayden's enlightened overview. That is what is great about the Seanad - that this debate can go to and fro and with regard to the perspective one might have. I have nothing but admiration for Senator Hayden, who is very active in the area of homelessness, which is of particular interest to me. There is nothing she said with which I would disagree.

While this is not a criticism of the Minister of State, there is a pattern of a mildly aggressive approach in the Government amendments to Private Members' motions. Senator Colm Burke in his polite and erudite way hinted at that. We find there is no effort to address the issues highlighted in Private Members' motions. We all have very busy lives - some of us work outside the Seanad. We spend considerable time on wording motions, researching issues and briefing fellow Senators. This is not the first time we have been faced with a lazy and inaccurate Government amendment. Part of the wording of this evening's Government amendment is not true. Regardless of whether we accept the spirit of the amendment, we cannot vote for something that is fundamentally untrue. More effort should be put in and more consideration should be given by Government Senators when dealing with issues we and other parties and groups raise.

While I do not want to be bombastic or aggressive, there are ways to be innovative on the issue. There is no real disagreement on the facts, although there may be on some of the figures. One of my former lecturers, Senator Barrett, could very quickly on the back of an envelope look at the financial comparators. Could we have a sub-committee? Should we move it to the Oireachtas Joint Committee on Health and Children where we could have a very limited discussion on the various contradictions on figures or is there a different way? I would loath having to bring this to a vote, but we might have to. We feel we are introducing a very good idea. If the Minister of State agrees, we would be willing to withdraw our motion. Having listened to the contributions from Senators Hayden, Colm Burke and Barrett, we would withdraw it as a recommendation if the Government withdraws its amendment, otherwise we would need to take it to a vote. We should continue to pursue the issue and my fellow Senators know our form in pressing votes. We have a good track record in that regard but would not like to do so in this instance. More effort on the Government's part in engaging with Private Members' motions in terms of language, respect and a more nuanced approach would be helpful. That is why we spend our time in tabling motions. We do not do this to annoy the Minister of State. We feel it gives rise to greater citizen awareness and improves the work we do in this House.

Senator Mary Moran

I echo Senator Mac Conghail's sentiments. While he was speaking I glanced around the House and it was clear that Senators from all parties were in agreement. All Senators only have the best interests of children at heart, whether they be terminally ill or have a life-threatening condition, or are in the whole of their health. We all agree on that. I echo the sentiments expressed by Senator Mac Conghail and find the situation to which he alluded very unfortunate. I read the motion tabled by the Independent Senators and initially agreed. However, I also agree with Senator Hayden in that we need to look forward.

The HSE must take a more active role in the provision of health and care for children who are terminally ill in order that people do not to have to collect mobile phones and hold coffee mornings for years on end to raise funds.

Like other speakers, I know from personal meetings I have had with the Minister of State, Deputy Lynch, whom I welcome to the House, how much she cares and how good a job she is doing. I do not envy her having to speak against this motion.

I pay tribute to the excellent work done by the Jack and Jill Children's foundation, the Irish Cancer Society and all other groups in terms of their provision down the years of nursing care and support to children with life limiting conditions. It is a fact of life in Ireland today that many families are faced with the awful reality of coming to terms with having a child who is terminally ill. The thought of this is not something anyone, in particular those of us who are parents, would want to countenance. Having to take sick children to accident and emergency departments or hospital can be a traumatic experience for children and parents. A child with a life limiting condition needs and deserves the best possible care we can provide, as do their families. I am glad so many speakers have in their contributions recognised the siblings involved rather than only the children who are ill.

In the "Wizard of Oz", Dorothy was able to get back home to Kansas by clicking together her red shoes and saying, "There's no place like home". When we are sick or upset we all long for our own bed and the familiar surroundings of home. It must surely be an added strain and stress for children and their parents to be in hospital far away from home. Many of us will have experienced the journey of visiting children in hospital far from home and all that brings with it, including having to find additional childminders, having to get time off work and so on. Being able to spend precious time at home with one's terminally ill child in the secure knowledge that all his or her needs are being met is a firm goal for everybody. It is good to know that many children are being looked after by the Jack and Jill Children's Foundation and through a range of services provided by statutory and non-statutory providers.

The Government is committed to the implementation of the policy, palliative care for children with life-limiting conditions, which was launched in 2010 and recognises that there must be an alternative to inpatient care for children who have been appropriately assessed and for whom a detailed care plan has been established, with the input of the children, where appropriate, and their parents. I agree with Senator Mac Conghail, that many interesting debates have taken place in this House since we became Members, on which there have been many views offered. It is important all viewpoints are listened to. The Seanad provides a forum for debate on important issues, which is one of the reasons we need to retain it.

Representatives of the LauraLynn House made a presentation to Joint Committee on Health and Children prior to the summer recess. One of representatives was the mother of a beautiful child who was terminally ill and in LauraLynn House. I spoke with her following that meeting. When I heard at the end of June that the little baby girl had died, I wrote to Sharon, the child's mother. I was delighted to receive a beautiful reply from her last week, which gives some indication of what parents of terminally ill children go through. I am sure she will not mind if I read a little of her letter which states:

Victoria fills every day with positivity. There is always some work to do for fundraising, someone calls or phones. She ensures that each day we have reasons to get out of bed and carry on.

While it is great that Victoria's mother and father continue to fund-raise, I do not believe care of terminally ill children should be dependent on fund-raising all the time. It is important the necessary supports are put in place. The letter goes on to say that LauraLynn House was most definitely sent by the angels to protect and care for Victoria, that she was most peaceful there and so well cared for medically, that she was also loved and that they the parents were also looked after and are still in close contact with the team. It further states that Victoria has been working her magic and fund-raising has been astonishingly successful, which makes them proud, and that they want to be there for LauraLynn as it was there for them.

Victoria was Sharon's only child. The family lived in Donegal. Her husband, who had a farm, had to give up work and sell everything in order for them to travel up and down on a daily basis from Donegal to Dublin to look after Victoria for the few months that they had her. They had to do this because the hospital in Letterkenny was not equipped to cope with Victoria. The parents also had great support from grandparents and so on. If we had in place a structure which ensured all terminally ill children were looked after all the time it would be great.

Senator Paschal Mooney

This is a difficult motion to debate. The sensitivities surrounding it are such that anybody who contributes must be aware of the human suffering and heart-break behind it. I suggest it not only applies to those parents with terminally ill children but to any parent, such as myself, who has a special needs child. It is an area where such parents do not want to go.

I am disappointed the Government has tabled an amendment to the motion which so comprehensively challenges of the original motion. Were I a Senator on the Government side I would probably be defending an amendment to the motion because that is the way the system works. Motions such as this are an opportunity for the Government to set out its stall, which is what it has done. However, this takes away to a large extent from the reasons the motion was tabled. The amendment is disappointing, not alone in terms of the manner in which it is worded but in that it does not offer much hope.

The Minister of State, Deputy Lynch, and I are old friends. I have great respect and admiration for what she is doing. In trying to get some context on this issue, I came across the executive summary, which is based on the 2010 report, which refers to the report of the national advisory committee on palliative care published in 2001. This highlighted the need for a review of children's palliative care services. A palliative care needs assessment for children was undertaken and the results published in 2005. The findings of the needs assessment in Ireland were consistent with those undertaken in other countries.

I then undertook a search for anything the Government had said on this issue during the past 12 to 18 months and came across a parliamentary question tabled by Deputy Pádraig Mac Lochlainn and responded to by the Minister of State, Deputy Lynch, in June this year. The response of the Minister of State was exactly as I have just outlined. It offered nothing else. I cannot find anything else that indicates what the Government has done so far in terms of the recommendations made. I understand that the Minister of State, Deputy Lynch, as in the case of all Ministers, did not write the reply. However, the reply goes on to state in the second paragraph that the policy recommends that there should be hospital based specialist palliative care teams led by a consultant paediatrician with a special interest in palliative care and that palliative care services should move to the new paediatric hospital. It further states that primary care services need to be developed, including the provision of a consultant paediatrician with a special interest in palliative care, outreach nursing posts, therapy posts, hospice in the home and respite care, both at home and away from home, in each of the HSE regions and that these developments would be in line with primary care network developments.

In order to plan and develop services, data collection is required and it is envisaged that the Health Service Executive will collect information on children living with and dying from life-limiting conditions. Has the data collection process been undertaken? It would not cost anything and it would be helpful. There are figures on the approximate number of children but the executive summary in the report calls for a data collection process. Perhaps the Minister of State has a view on this issue.

I will cherry-pick some of the many recommendations in the report. A key point is that there should be locally-based children's palliative care support available at the network level. Each HSE area should develop a plan for respite facilities for children with life-limiting conditions and their families. I could not see anything to do with children on the HSE website. Maybe I was looking in the wrong place. It only referred to palliative care provision but did not specify the unique nature and needs of children with life-limiting diseases and their families. I could not find it on the website, although the Minister may respond by saying it is there. Is the HSE developing a plan for respite facilities? Is there any co-ordination in the area?

Another recommendation is that all relevant hospital and community staff should be facilitated to partake in education and training on children's palliative care. Is that being undertaken? It is in-house training and does not cost anything. Another recommendation is that all health care professionals working in palliative care should have the opportunity to engage in research. Is that happening? Is research being undertaken? It should not cost too much under current structures.

The final recommendation I will address is one to ensure that palliative care conforms to best practice, and that protocols and standards in respect of palliative care for children should be developed and should be overseen by the national development committee for children's palliative care. The national development committee could provide a national forum for the cohesive, integrated development of children's palliative care services and would address the regional administrative area variations in service provision to children with life-limiting conditions and their families. The ad hoc approach has been referred to by other speakers. Is there any progress on the provision and establishment of a national development committee for children's palliative care?

Senator Tony Mulcahy

Although it sits uneasily with me, I cannot but fully support the motion. Perhaps I cannot support it in its entirety but I can empathise with the proposers of the motion. When we table amendments, I wonder whether we examine what we are writing and how we are presenting it. To give the impression that we have matters under control in the delivery of services in palliative care or disability is a complete misrepresentation. We are not quite there yet. The value for money report is the key to many of the questions asked. My views on this area have been very well expressed and I also communicated them to the Minister of State in conversation. The quicker we get to a model whereby the money follows the patient, the better. That is the only line in the reply that interests me.

Two weeks ago, the Rehab care awards were broadcast on television. At the end of the night, the CEO made the final presentation and my stomach nearly turned. When we are looking at people drawing salaries in excess of €300,000, we have a problem. We justify it by our presence. One can name any of the disability services organisations. Some of them operate on very limited budgets but I have attended presentations in the audiovisual room in Leinster House and when I see a CEO, I am looking at €125,000. The quickest thing we could do is to implement the value for money report and apply the principle that the money follows the client. The client can determine how to get the services and who is delivering the services.

We must also consider the representative bodies who purport to represent the needs of those with intellectual disabilities and other disabilities. I am talking about the representative bodies, not those who deliver services. We should immediately stop all funding to representative bodies as we did with the People with Disabilities in Ireland, PwDI, and transfer the money to service delivery. The money should follow the client so that the client can buy the service. I do not need any representative group to represent me or my child, nor do many other people, but we do need a service. I do not need a CEO to be paid €300,000. If the Jack and Jill Children's Foundation had that lump of money tomorrow morning, it would make good use of it judging by what the organisation delivers from its budget. The same is true of many service providers within the HSE.

I was at a meeting in Limerick six or seven years ago and spoke to a finance officer who told me she gave a cheque to the Daughters of Charity, the Brothers of Charity and Enable Ireland for €74 million. She did not even receive a set of accounts for that sum and had no control over where the money went. The sum of €74 million was for services in Clare, Limerick and Tipperary. She did not know what the organisations wanted to do with it. That has changed but not to the extent we want. If we could make the determination on where the money was spent, I am sure the Minister of State would be inundated with people seeking a service because they would recognise the quality of the service.

The Minister of State has done much work and I trust her implicitly to deliver it. The Minister of State knows my form on this topic. We need to get to this new model immediately. In fairness to the Brothers of Charity, it tried to stop paying increments to staff. The matter was taken to the Labour Court and to the High Court. It was determined that because the organisation received funding from the Government, it was covered by the Croke Park agreement. I do not generally have a problem with the Croke Park agreement because it provides service delivery. When we hand over State money to private bodies, they are covered by the Croke Park agreement as a result of receiving that money. The organisation was doing the right thing. Let us not get mixed up by the charitable status because the organisations are damn well paid for the job they do. Voluntary body service providers are not voluntary, they are damn well paid. The quicker we get the money to follow the client, the quicker we will get a value for money service. We will get more respite hours, more palliative care and better quality support for our children and the next generation.

Senator Trevor Ó Clochartaigh

Tá sé an-suimiúil a bheith anseo ag éisteacht leis an díospóireacht anocht. Listening to the debate, I am appalled by the cynical politics of the Government amendment. Sinn Féin fully supports the motion and I call on the Government Senators to do likewise, notwithstanding the offer made by Senator Mac Conghail, to withdraw the amendment.

I do not disagree with the analysis of the health system by Senators Mulcahy and Hayden. The motion may be wordy but it is simple and can be reduced to the last paragraph. It seeks "to put in place a national home nursing care programme for children with life limiting conditions with a dedicated and trackable budget which will immediately result in savings for the State and uphold the best interests of the child". It is very simple and I do not see how the Government Senators can oppose it. It will save us money and treat children with the dignity they deserve at the end of their lives. The reference to recognising "that the preference for keeping the child/client at home must take account of the availability of resources across all types of service delivery funded under the Disability and Palliative Care programmes" sums up the amendment. That shows the fundamental philosophy of the Government is about pounds, shillings and pence, even if we are saving money. The economics of the HSE are upside down and do not make sense.

There is a similar example in Galway West. A surgeon does vascular surgery for people whose legs need to be amputated. He needs a pump to be made available to people who have issues with their legs. If it is made available for three weeks, it costs €3,000. If it is not made available, he must amputate their legs. They must be sent to hospital in that case, must remain in hospital and afterwards their houses must be refurbished at a cost of approximately €30,000. Where is the economics in that?

It is indicative of the way the HSE and health service are being run.

These are the economics of austerity. It is the kind of messed-up economic thinking that occurs when one ends up paying so much money for the bank bailout. It was very interesting to read the recent report of the UN Committee on Trade and Development. It stated the austerity programme is not working and that it is not turning the economy around. When we cannot even allow for the quite modest budget I desire for children who are dying – let us be honest in that regard – and their families, we must ask what kind of country we are living in. The Government has not tackled this issue.

While I respect the Senators on the Government side, I believe they are all at sea on this motion. I cannot find anyone who supports the counter-motion brought forward by the Government. Therefore, the Government Senators should vote with their hearts and minds and support the Independent Senators' motion, as is right.

The Government has not got to grips with consultants' pay or tackled the issue of special advisers. The CEOs of semi-State bodies are still being paid more than the President of America. The allowances in the public service and the tax breaks made available to private investors for their pension funds have not been tackled. The Government cannot find time to tackle these but it can find time to put forward an amendment to a motion that makes complete sense.

I agree with Senator Hayden on her vision for a health system but do not believe the health system advocated by the Minister and Department is the one she dreams of, nor is it the one I dream of. We have a two-tier health system and there is privatisation of home care and nursing services. There are cutbacks to dental services in rural areas and there is centralisation. This is not of what we dream.

While I agree with Senator Mulcahy's analysis of the disability sector, if we had a properly serviced and funded universal health service, there would be no need for the charitable organisations the Senator outlined to deliver services that should be essential and which people, disabled or otherwise, deserve as of right.

We support the excellent motion brought forward by the Taoiseach's nominees and will oppose the Government's amendment.

The history of the State is littered with examples of its abdicating its responsibility to provide services and support the ordinary citizen, thus leaving the job to the voluntary sector. In this motion, there is a particularly good example of the type of service offloaded by the State onto the charitable and voluntary sector. The motion notes correctly that one charitable foundation "has saved the State up to €235 million since 1997, when multiplied by the 1,600 families supported at the cost of hospital care". The HSE grant during the same period to fund such services was €4 million, a fraction of what was needed.

Services such as essential nursing homes for the unwell are provided by most developed states. To fail to provide for such care, which can often be done indirectly, would constitute a breach of someone's right to health care. Our system of health care provision allows for such failures daily, and it is worse still when vulnerable children are the ones who are adversely affected by the failure. It is clear that the State is failing, and it is for that reason that organisations such as the Jack and Jill Children's Foundation and the Irish Hospice Foundation have had to step in. They deserve great credit for their work but this does not absolve the State.

Let me refer briefly to the related issue of rare diseases. There is very limited support for children with rare diseases. On foot of Deputy Ó Caoláin's proposal, the Joint Committee on Health and Children held a special hearing on International Rare Diseases Day on 29 February last. Members heard from families affected. I understand this was a very useful discussion, and many of the children availing of services such as those provided by the Jack and Jill Children's Foundation have life-limiting conditions. When a person is diagnosed with a rare condition, the impact on the entire family is enormous. It is important when considering putting in place a national centre for rare diseases with access to information and looking at pathways to health care and access to services that the patient be put at the centre of the process.

The Government Members should stop the hand-wringing, do the right thing, withdraw the amendment and support the Independent Senators, who have tabled a motion in good faith. There is no great commitment on the Government side to put in place the national nursing home care programme that has been requested. The Government should think of the children and their families and do the right thing. Caithfidh na Seanadóirí an rud ceart a dhéanamh agus tacaíocht a thabhairt do na Seanadóirí Neamhspleácha.

Minister of State at the Department of Health (Deputy Kathleen Lynch)

I always appreciate the debates in the Seanad. I have said this on several occasions and I am not just saying it because I am present. The Seanad has a character of its own that we do not see in the other House.

I will deal with the last speaker first. I come in here quite genuinely and my approach to all these issues has always been on the basis that we need to find a solution to the difficulties that face us all. I have always taken that approach in politics. To challenge people in the way Senator Ó Clochartaigh challenged Senators to stop the hand-wringing is inappropriate. We ought to challenge Senator Ó Clochartaigh to stop making politics out of something that is clearly non-political. The benefit of having a cohort of Independent Senators is that it affords the opportunity to have a debate along non-political lines.

Senator Trevor Ó Clochartaigh

Let us hope they vote non-politically in that case.

Deputy Kathleen Lynch

The Senator needs to keep that in mind. The benefit of having a cohort of Independent Senators is that we are afforded the ability to have this type of approach. It is never overtly political.

I spent my afternoon trying to find a compromise on this issue. Ultimately, I realised I could not achieve one, but this is not the fault of anybody in this room. It appears that once there is a resource issue in respect of any motion, it is not possible to allow that motion to pass as it places an imposition on the Government to deliver virtually immediately. This is why the counter-motion was tabled. It is legitimate to state the drafter of a counter-motion always seeks to defend and present the opposite view to the motion, as put. Perhaps we need to examine seriously how we conduct business in this regard. We should consider trying to have more compromise and, therefore, more solutions to the difficulties that face us.

When coming here today, I knew I could not win the moral argument. How could one possibly do so? One does not have to be a mother to understand the difficulties and awfulness of the circumstances in which people find themselves. What struck me most about the contribution of Senator Mary Ann O'Brien was the reference to the smells and sounds of the family home. It is not something we always think of but it is clearly part and parcel of what we are.

The Senators on the Government side are, as Senator Mooney stated, obliged to support the Government's motion and they do so in the knowledge that they too could not win the moral argument. That is a position people find themselves in and it is no fault of theirs. Technically, it is my fault. If this debate proceeds to a vote, so be it, but I would prefer if there was none. Outside the budgetary process, there is nothing we can do in regard to the funding. I have spoken on two separate occasions, once today and once last week, to the Minister for Health about funding for palliative care for children. We did not reach an agreement.

However, I was encouraged by his statement that he wants to sit down with the organisations involved to discuss how to resolve the issue. It is not for me to say "Yes" or "No" on the organisations' behalf, but the invitation has been made. It is probably the first step in the process of coming to terms with an issue that needs to be addressed.

We could talk all night about who delivers the service. As we all know, several organisations deliver it in a caring and compassionate way. One of the organisations is the HSE, which we need to keep reminding ourselves is the health deliverer. Often, I meet people from the HSE who are quite demoralised by the continual undermining of their position. Specialist groups beyond the HSE also deliver health services that, in some cases, the State would find difficult to provide for the same type of money.

The value for money review tells us a great deal. I am convinced that we need to know much more. I am never certain where children with life-limiting conditions fit into the policy, for example, primary care, a patient-centred health service or disability services. Our spend on disability services will not just be €1.4 billion. That amount is a fraction of our overall spend and does not take into account what the State is spending in this regard on social welfare, education, transport, etc. We need an in-depth examination of how we are spending that money and the choices that people do not have.

The Senator and I have had long discussions. Could any Member imagine having a disability and spending his or her entire adult life attending a day centre every day? I could not. Perhaps people would like to go to a pub, a match or a park. These are the choices that we make every day. Perhaps parents would make different decisions for their children if we provided them with different choices. An option will not always be cheaper; some options will be more expensive because they will be delivered in different settings by different people. In the main, this is a question of choice and allowing people to live worthwhile lives. Be one a young child or an adult, the right to choose the life one lives is fundamental.

As to dividing on this motion, there is not much between us. The Government faces a resourcing difficulty, for which reason we cannot withdraw the motion if it is put to a vote. I apologise for putting people in a position in which they must take these decisions. I hope that the invitation will be accepted and that we can start the process.

Senator Fidelma Healy Eames

I was hoping to contribute before the Minister of State because I wanted to appeal to her to try to find a way through this situation in order that we would not need to push the motion to a vote. I appreciate the efforts that she outlined. The motion has stilled the House and I compliment its proposer and seconder. It has challenged the way we do our business politically, and not a minute too soon. It is ridiculous that, too often, there are two sides on matters like this.

The Minister of State concluded on the basic point, that is, we should have the right to choose how we live our lives. I understand the motion to mean a right to choose a care model that would suit the family and child in question. According to Senator Mary Ann O'Brien's proposal, the home care model saves the State nine times the cost. If we reject this motion, there must be a fundamental difficulty within the Government. Could we validate the figures? It is interesting that the Minister of State has spoken with the Minister, Deputy Reilly, who has offered the relevant organisations an invitation to talks. Before the House divides, that invitation is worthy of consideration.

A number of months ago, the House's discussion with the Minister for Justice and Equality, Deputy Shatter, on the issue of prostitution met with some success. The Independents tabled that motion. As was our request, the Minister reverted to the House within six months. I do not know whether Senator Mary Ann O'Brien is in a position to hear me.

Senator Mary Ann O'Brien

I beg the Senator's pardon.

Senator Fidelma Healy Eames

Would she and the other Independent Senators consider a stay of execution for a number of months?

Senator Mary Ann O'Brien

We do not have that long.

Senator Fidelma Healy Eames

This is September. Can I take it that the Minister, Deputy Reilly, is willing to sit down with the organisations within one month?

Deputy Kathleen Lynch

To clarify, the difficulty lies with the fact that this cannot be done outside the budgetary process.

Acting Chairman (Senator Jillian van Turnhout)

Other Senators will be pressed for time.

Senator Fidelma Healy Eames

I appreciate that and will conclude. I do not fully understand what the Minister of State means. An urgent meeting between the Independent Senators and the Minister should be held to address this issue. If we support Senator Mary Ann O'Brien in ensuring that the meeting is held in October at least, will she consider not pushing the matter to a vote? If she ever needed to retable the proposal as it is or in another guise, she would have my support in a vote. I am making a difficult request, as the Senator knows what is at stake. We are lucky to have parents who want to take care of their children at home. Some 1,500 children are in foster homes and institutional care. Their parents have neglected them. In some cases, their parents abused them. This is one of the key issues in the children's referendum. This debate is concerned with what type of nation we are.

Perhaps I have said enough. I had not planned to contribute or submitted my name for time. The issue challenges us on our value system.

Senator Rónán Mullen

Cuirim fáilte roimh an Aire Stáit. Ba bhreá liom tréaslú leis na Seanadóirí Mary Ann O'Brien and Jillian van Turnhout as ucht an méid atá ráite acu. Chuala mé an díospóireacht ón tús. Bhí mé tógtha go mór le cé chomh praiticiúil is a bhí an méid a dúirt siad. Is léir nach ceist acmhainne atá anseo. Is ceist bainistiú acmhainne atá anseo. Is trua mór é nach bhfuil sé de shamhlaíocht ag an Rialtas breathnú ar an gceist i gcomhthéacs bainistíochta, seachas acmhainní.

I wanted to welcome the Minister of State to the House but she is leaving. We are speaking as one Minister of State has resigned - I presume on principle - because of her disquiet at the way certain decisions are being taken or the lack of communication. This is exactly the kind of issue that should prompt those kinds of consideration. The Government has clearly been deaf today, despite a really eloquent and touching case being presented - I mean that in no patronising sense - by Senators Mary Ann O'Brien and van Turnhout. They speak with different areas of expertise and a deep knowledge and experience of the subject at hand. All we have got from the Government is some blasé promise of a meeting. It is as if we are speaking about some much less important topic than the care of children with life-limiting conditions.

Only last year a report launched jointly by the Children's Sunshine Home and the Irish Hospice Foundation indicated that, in 11 counties, respite care is not available to all families of children with life-limiting conditions. The report at the time was based on information from the HSE in Dublin mid Leinster and Dublin north-east and indicated that only limited respite services were provided. Access depended on such factors as a child's age, the nature of the diagnosis, the prognosis and the child's home location.

The importance of respite services has been recognised by the Department of Health, which launched a new national policy for children's palliative care in March 2010. What is the point of policy documents if there is not even enough imagination to consider problems that are not, as has been noted, fundamentally about extra resources but rather the management of existing resources? One wonders about the commitment to human dignity that allows such an unthinking response as we heard today. It was mentioned in the Seanad that there are certain motions that simply should be unopposed, and this is one of them. I am very disappointed at the easpa samhlaíochta, or lack of imagination, from the Government.

I am grateful to Senator Mary Ann O'Brien and others for their interest in jointly hosting a briefing on a related but separate matter some months ago, which dealt with families which received a diagnosis of a fatal foetal abnormality. On that occasion we heard about the importance of perinatal hospice care, and there is a commitment from the Government that we will have a debate on this in due course. Similar issues arise whenever we speak of real stories of young children who, as Senator Mary Ann O'Brien noted, cannot really be expected to make it to out-of-home respite or preschool care when they are simply not well enough. It is quite clear that the context for care should be in the home.

Great credit is due to the Jack and Jill Children's Foundation for all the work it has done. It is sad to think that as a child approaches age four, it can be a point of fear for parents that the State is not in a position or willing to do the needful in terms of ongoing care. The case has been made clearly about how much financial sense this makes. It is a remarkable figure that it is eight or nine times less expensive to provide home care than to provide care in a hospital. Senator Mary Ann O'Brien mentioned what a relatively small sum of money is at issue, with €15 million being sufficient. I am sure it is possible, despite the constrained circumstances, to examine our expenditure and ask whether we should prioritise our resources in such a fashion in order that children with life-limiting conditions can be put closer to the top.

I will not go on any further as the case has been made by the Independent Senators on the Government side of the House better than I could ever possibly make it. I commend them for doing so. I ask the Government to rethink its position, even at this stage, rather than fobbing people off with promises of meetings. It should take the proposal seriously and consider the issue with fresh and compassionate eyes and with appropriate prioritisation.

Senator Martin Conway

I do not propose to go over the ground covered, as most Members on both sides of the House would understand my commitment to the issue. I welcome to the Gallery Mr. Jonathan Irwin, for whom I have a huge regard, with Senator Mary Ann O'Brien. I notice our colleague from the other House, Deputy Mattie McGrath, is also in the Seanad, keeping an eye on proceedings. Perhaps he has an ambition to join us at some stage. Either way, this issue is of such importance that I would regret a division of the House on it. I do not doubt the integrity or intentions of the Minister of State, Deputy Kathleen Lynch, and the Government.

It can be said about this House that issues pertaining to people with disabilities have received considerable attention during the short period of the 24th Seanad. We have had numerous discussions and a couple of well worded Private Members' motions, with the Minister of State, Deputy Kathleen Lynch, in the House on a number of occasions. Senator Mooney may have been present when I credited the work done by a former Minister of State, Mr. John Moloney, during his short period responsible for disability services. He established a value for money audit published last July. The recommendations of that audit were fairly well figured out by many people involved in the disability area. The simple concept was that money should follow the client. That approach should percolate through the various disability areas.

I have spoken on numerous occasions about what I would describe as the obscene salaries of some chief executives. Senator Mulcahy may have referred to this in previous discourse. Some chief executives on this small island of ours are paid in excess of €300,000 per year. They are in charge of non-governmental organisations providing support to people with disabilities. On the other hand, people like Mr. Irwin commit their lives to bettering the position of people and infants with disabilities. It is a crying shame that during the course of the Celtic tiger, the type of provision being discussed in this debate was not dealt with and that we threw money at problems without identifying solutions.

I am convinced that the €1.5 billion mentioned by the Minister of State for providing support for people with disabilities is the start. That funding is adequate to provide all the support mechanisms in the State for people and children with disabilities but the problem is that it is channelled inappropriately. It is most likely that 70% to 80% of the money is spent on administration, renting buildings and paying inflated salaries that are protected by various mechanisms. We must get real about these resources. We are effectively a broke country in a programme, and even today we are still spending €1.5 billion on support services for people with disabilities. Where is at all going? That should be an ample amount to provide quality care for infants, young adults and people in general with disabilities. We will not go over the recent personal assistant debacle but it is worth noting that one personal assistant hour costs €28 or €29, with €12.50 being paid to the person doing the work. There is something fundamentally wrong with a system where that practice is allowed prevail. Everything must be put on the table in a mature, realistic and determined approach to improve this process. I do not want to see a vote on this motion but we are in a democracy. Senator Mary Ann O'Brien is very passionate and committed to the work she has done and she has proved this in action, not just words. It is her call. I appeal to people to realise that there is a genuine sense of sincerity in all quarters, including the Government.

They are dealing with a very difficult and precarious situation. The Minister of State spoke about the budgetary process. Unfortunately, Governments must abide by systems and bureaucracy. There is little choice because if one breaks the budgetary process, myriad people will criticise one for doing so and one is brought before the Committee of Public Accounts and so on. There is a process. We might not like it but if the intentions are there and if the door is open to meaningful dialogue while this budgetary process maxes itself out ahead of the next one, I hope the well meaning invitation will be taken up not only by the Senators but by the NGOs whose chief executives are not on the €4,000 and €5,000 per week pay scales.

I want to see sincere and genuine engagement where realism is the name of the game but, unfortunately, not all the NGOs are like the Clare Crusaders, the Jack and Jill Children's Foundation or the other organisations which do fantastic work. They will have to start to look at their systems and into their hearts and realise that money, which has been wasted, could be put to far better use by creating schemes, such as that proposed.

Senator Mary Ann O'Brien

I thank the Minister of State for coming to the House. Earlier somebody alluded to the fact that I am not a politician. I am definitely not a politician because I am so confused and so comforted by all of the Senators words this evening. I know we all feel the same. There are 1,400 families, of which we know, who are depending on what we do this evening but I am also hearing about this terribly frightening budgetary process. I am shaking in my boots already.

I had a quick chat with the Minister of State. She gave me her word and said she would arrange a meeting with the organisations within a week. I am very comforted by that fact but she said there was the budgetary process. Before this evening, I wanted to be able to come in here with a commitment that we could work together. I must have called the Minister for Health and his Department on seven different occasions and I e-mailed him three times but I could not get him to call me back or meet me.

Senator Maurice Cummins

He was here all day.

Senator Mary Ann O'Brien

I know he was here all day but he was not here to deal with this business. Why would he not answer me back and give me five minutes? I did not want a long meeting; I just wanted a huddle-type meeting. The last time the Jack and Jill Children's Foundation met the Minister he said he admired the quality and the excellence of its service and the way it served the whole country but that he was stuck between a rock and a hard place and that he could not find this money.

Let us just take a business approach to this issue. I have the HSE annual financial report and the list of the different agencies throughout the country and how the €3.5 billion is divided out. Senators Mulcahy and Conway said many interesting things about the different organisations. I think Senators Hayden and van Turnhout talked about the policy and the value for money report which came out in June. The only problem is that it was just a policy report; there was nothing in it about value for money. Laurence Crowley, who is a brilliant man, spent three years doing that report but I would say to Senators Conway and Mulcahy that the problem is value for money within the €3.5 billion.

I know for certain that the Minister is between a rock and a hard place but he must get HSE management to sit down and sort out the issue of value for money. We only want to extract €15 million out of the €3.5 billion. It is there. I listened to Senator Hayden and would have the same vision.

In a meeting with the Minister of State, Deputy Lynch, and her senior HSE officials, I was accompanied by the nurse of a family who had taken a little child out of Crumlin hospital. The family was looking for a new buggy. Sandra apologised and said she did not want to raise individual cases but she said Crumlin hospital was looking for the buggy it lent this family in Wicklow last February. This was eight months later. The HSE could not get the €1,600 for a buggy. I looked into this recently and I will tell Senators about value for money. This buggy is for a special needs child and the buggy company could give me the buggy in three weeks but the HSE said it would be three months. We have to look at the value for money the HSE is giving.

At that meeting, the HSE said that it saw that the Minister of State, the Jack and Jill Children's Foundation and the hospice wanted to follow the patient. That is what we all agree on. The HSE management said it wanted to do that in the short to medium term, which I thought was fantastic. In my world, short to medium term means in the next month but the HSE manager said that to him short to medium term meant five to eight years. I do not have five to eight years because our children and our families do not have five to eight years.

I do not know what to do this evening. I should push this to a vote but I really trust the Minister of State and feel her heart is in the right place. However, we will have to break budgetary processes because the money is available, as Senators know. I need a promise to go in, fight for these families and take the money out. It is only taking €250,000 from one area, pushing it around and reallocating it.

Acting Chairman (Senator Jillian van Turnhout)

Is the Senator withdrawing the motion?

Senator Mary Ann O'Brien

I am withdrawing the motion for this evening but if I do not get somewhere next week with the organisations, I will be back because I know I will be given time and will push this to a vote.

Amendment No. 1 lapsed.

Motion, by leave, withdrawn.

Acting Chairman (Senator Jillian van Turnhout)

When is it proposed to sit again?

Senator Maurice Cummins

Ar 10.30 maidin amárach.

The Seanad adjourned at 8 p.m. until 10.30 a.m. on Thursday, 27 September 2012.

Seanad Éireann debate - Wednesday, 26 Sep 2012

Life-Limiting Health Conditions in Children: Motion

Seanad Éireann debate -
Wednesday, 26 Sep 2012