Topical Issue Debate

Health Services Provision

Deputy Mick Wallace

I wish to discuss a case with which the Minister of State, Deputy White, might be familiar, that of Mrs. Eimear Lynch-Rowe who is based in Gorey, County Wexford. Eimear suffers from a very aggressive and rapid form of motor neurone disease, MND. Her symptoms first became apparent in January 2013, and she received her diagnosis last October. Between January last year and now she has completely lost the use of her feet, legs and lower back. Her arms are now weakening and her ability to speak and swallow have severely diminished. She wrote to me a couple of weeks ago, telling me:

To assist with my breathing I am now on non-invasive ventilation at night. The amount of time I require to be on this machine will increase in the near future. The progress of my disease means that when the MND reaches my chest, my ability to self-respirate will deteriorate and ultimately fail. This is the stage at which I can be kept alive using invasive ventilation. All of this will, and can happen, despite my mental faculties and all of my senses being in 100% working order.

I have some questions on which I hope the Minister of State can shed light. First, how much would it cost the HSE to provide invasive ventilation for someone with motor neurone disease living at home? What Eimear is really looking for is a detailed breakdown of the costs involved in invasive ventilation. She said:

The only figure - plucked out of the air - that I have ever heard is €300,000 per year. From our research, we cannot get anywhere beyond a cost that is a mere fraction of this figure, for care that is tailored to me, in my individual circumstance. I need someone to sit down with me and go through how much a package of home care, unique to me and my personal situation, will cost.

I understand there are currently two people in Ireland with motor neurone disease who are living at home on invasive ventilation. Could the Minister of State tell me how that is funded? Is he willing to meet with Eimear to discuss her situation? It appears that money is the main issue. I accept the Government does not have an unlimited supply of money but this woman’s life is at stake. I look forward to the Minister of State’s response.

Minister of State at the Department of Health (Deputy Alex White)

I thank Deputy Wallace for raising this issue. Motor neurone disease is a complex and challenging condition. The diagnosis, treatment and care of individuals with motor neurone disease requires input from a wide variety of services, ranging from GP and community services through to acute hospital and specialist disability services.

I understand that the individual at the centre of this case has complex needs. I am familiar with the case raised by the Deputy. The HSE has advised me that numerous multidisciplinary meetings have taken place to try to ensure appropriate care for Mrs. Lynch-Rowe. She is currently receiving continuous positive airway pressure therapy at night time provided by HSE community services. The HSE is continuing to explore all options for this patient's future care. The HSE remains available at all times to discuss these issues directly with the individual and her family.

The HSE advises that the question of whether a patient can access home ventilation therapy, whether invasive or non-invasive, is not purely a financial issue but must be considered across a number of dimensions, including: First, a proper discharge care plan, which is discussed between the hospital consultant team and the appropriate primary or community care team, needs to be agreed and activated to ensure the appropriate set-up is in place and can be sustained to meet the care needs of the patient over time; home ventilation needs appropriate equipment, trained staff and both patient and family education as well as arrangements for the upkeep and maintenance of such ventilation equipment; nurses supervising such patients at home need to be appropriately qualified and competent to supervise the patient clinically; and, a commitment to provide the necessary financial resources to support the care arrangement into the future.

As I mentioned earlier, the patient is currently using non-invasive ventilation therapy in the home and I understand that there is currently no clinical indication for full mechanical ventilation in this case. However, the HSE has advised that this case will be kept under review and should a requirement for invasive home ventilation therapy be identified for this patient in the future this matter will be considered by the relevant hospital and community services.

Deputy Mick Wallace

My second question related to a breakdown of the cost. I accept there are many issues at stake. The Minister of State referred to equipment and trained staff and where the financial resources would come from. Has anyone estimated the potential cost to provide such a service in the home? Does the Minister of State have even an approximate figure?

Is it the case that the HSE will meet with Eimear and discuss her care needs? It is possible that with co-operation and goodwill a care package could be provided at a lower cost than some might fear.

Members are aware of a recent case where a woman wanted to end her life because of illness but the State did not allow that. That is currently the rule of the land so Eimear would not be allowed to take her life either. The issue is whether the State could take the decision to allow her to die. If the State cannot find the money to provide the necessary care then, in effect, it would be making a call that an individual is not allowed to make. That might appear stark and I hope it would never come to that but the issue is complex and it would be great if there was serious co-operation to explore the ways to resolve matters.

Deputy Alex White

I confirm that the HSE is available at all times to discuss the issues directly with the individual concerned and her family. I am assured that is the case.

I agree with the Deputy that there are complex issues involved. In deference to the individual concerned I wish to move away from the case that has been raised because Deputy Wallace is touching on the broader ethical question of how such decisions are made in terms of cost. I agree with him that such issues are enormously difficult and complex, ethically and otherwise. They deserve a lot more debate in society and perhaps in this House. We should try to find a context where we would debate that.

To return to the individual situation under discussion, it is not the case that it is reducible to the question of cost. As I indicated, there are a number of different factors and according to the expert medical opinion available to me and the HSE I am advised that there is no clinical indication for full mechanical ventilation in this case. That having been said, I do not wish for a moment to indicate to the Deputy that I am in any sense dismissive of the issue he raised. I am aware of the particular case. The HSE will discuss the issues directly with the individual concerned and her family but in these circumstances it would be wrong to draw the conclusion that this is in any way reducible simply to the question of cost because there are clinical considerations as well.

Home Care Packages Provision

Deputy Gerald Nash

I thank the Leas-Cheann Comhairle for allowing me to raise the very distressing and sad case on behalf of the Garvey family in Dundalk, County Louth. David Garvey is a young man, he is only 33 years of age and he suffers from a very complex condition called locked-in syndrome, which leaves him completely paralysed apart from control of his eye movements. He cannot move or speak and his only form of communication is through blinking or eye gaze. Despite this dreadful affliction, David is fully conscious and able to think and reason normally.

His condition requires a high level of medical attention. He is currently receiving care from the excellent staff in Beaumont Hospital, but his fervent wish is that he be allowed to leave hospital and be nursed in his home in Dundalk. In January, David was delighted to hear that the HSE had approved this request and the required funding of €200,000 to €250,000, which would enable him to go home. However, this was, in effect, overturned and the HSE now claims that the cost would be in the region of €400,000 to €450,000. I am interested to find out how we can have two such wildly varying figures in the space of a few weeks, and which figure is accurate. I believe the Minister of State would acknowledge that David's case is quite a tragic and sensitive one and deserves the most sensitive care and attention we could possibly give it.

Perhaps we should reflect on David's own words to the HSE, which he wrote with the aid of his family, holding up an alphabet chart and which I wish to put on the record. He wrote:

Can you please close your eyes and imagine lying in bed not being able to move a muscle and being hooked up to a life support machine? Imagine when you open your eyes the first thing you see is a ceiling, and you will see that same ceiling for the next few hours until a nurse comes and move your head. When your head gets moved, your next view is a wall with a mirror and sink.

Believe me, this will be the highlight of your day until your family comes at 3 p.m. to visit. Now, imagine you have an itch and you can't move to scratch the itch and you can't tell anybody because you can't talk!

You can't even wipe your eyes if they get sore or dry, you can't move your legs if you get a cramp.

Your family will try to keep your spirits up and try to make you laugh. They will read the paper and tell jokes and tell you about their day. That's the hardest part. Knowing that you are not part of the family any more.

When they leave, you try and not let them see how upset and miserable you are. That's when your tears will come. You can't even wipe your eyes until a nurse comes and does that for you.

I JUST WANT TO GO HOME.

Please let me go back to my family for somewhat of a normal life. Let me plan my wedding. Let me have happiness.

It took David one week to write this letter that has taken me one minute to read aloud to the Chamber.

I believe that David Garvey, his family and his fiancee are entitled to some happiness. Surely it is not beyond the ken of the system for this matter to be brought to some kind of a satisfactory conclusion whereby he can be allowed to go home.

I know the family are very appreciate of the support they have received from the HSE and from Beaumont Hospital, which I also want to put on the record. I ask for this to be brought to some kind of a satisfactory conclusion where commitments that were previously made can be honoured and David can be allowed to come home to be cared for by his family and by the staff of the HSE.

Deputy Alex White

I thank Deputy Nash for raising this issue this afternoon. The individual at the centre of this case raised by the Deputy has displayed tremendous tenacity and bravery in dealing with his condition. I must also acknowledge the devastation of his family and of his fiancee at his diagnosis and their incredible commitment to him on a daily basis.

Locked-in syndrome is a challenging condition in which a patient generally retains cognitive function but requires constant clinical care, treatment and supports, such as ventilation. It must be acknowledged that in this case the individual's needs are particularly complex and patients with such needs are generally cared for in an intensive care setting.

His post-discharge care would involve the provision of appropriate medical devices, such as a ventilator, which are essential to his survival, and 24-hour specialised intensive care unit nursing care. Given the complexity of his care needs, to be cared for at home, he would need an extensive home care package, including 24-hour specialist nursing care with clinical governance by an appropriate consultant.

I understand several multidisciplinary meetings have already taken place at local level between the family, the HSE and Resilience Ireland, a company which specialises in specialist advanced home care management. I have also been assured that there has been significant engagement between Beaumont Hospital and the local community care services in an effort to find a solution appropriate to this patient's needs.

While it may be possible to provide such a solution, the equipment, staffing and resources required are likely to be very substantial and would have to be accommodated within the overall resources available to the HSE for disability services. This case must also be considered in that context.

The Department of Health has discussed this case with the Health Service Executive and a meeting between the family and senior officials in the HSE has been scheduled for early next week to discuss and consider the patient's request to transfer home from Beaumont and the significant complex issues associated with such a transfer. The HSE will continue to explore with the family all options for future care, including alternative community service providers or the individual's possible move to a hospital closer to home and family.

Deputy Gerald Nash

I thank the Minister of State sincerely for his reply, which was enlightening. I am glad to hear the HSE has committed to meeting the family next week, and I want to record at the outset the family's thanks for the support it has received to date from the HSE. Local HSE officials are on record as stating that "there is a national fund for emergency cases", which I understand the national director of social care will utilise over the next 12 months. That is a direct quote from a letter received by the family from a local official. To give the Minister a timeline in terms of the way things have changed, the same local official went on to say that "the process to access the funding has not yet been agreed". He further insisted that he will continue to advocate for David and for the family at national level. However, in a subsequent note to me from another official, who is acting in the same capacity as the official to whom I referred previously, it appears the cost of bringing David home and having an appropriate home care package to fulfil his needs seems to be oscillating between €400,000 and €450,000. Notwithstanding the reference made in letters from the HSE to the family about the existence of a national emergency care package or that funding stream, I recall the Minister of State stating in his contribution that the budget for the care of David would need to be met through the disability service budget available to the HSE.

That official also made the point that David's care at home would have to be led essentially by a respiratory care consultant attached to Our Lady of Lourdes Hospital in Drogheda. As I understand it to be the case, that respiratory consultant is no longer in that position. That further complicates matters from the HSE's point of view.

Responses are needed to two fundamental questions, and I appreciate the Minister of State may not be in a position to respond to those today. First, will the HSE locally and nationally commit to providing the funding necessary under the emergency care scheme to David and, second, if it is the case that there is not a respiratory consultant in place currently to deal with his care needs, will that respiratory consultant be appointed shortly to meet David's needs, and the needs of others in the Louth-Meath area? I understand and appreciate that he may not have the answers to those questions today. I appreciate also that I am sure he will be as moved as I was by David's story and the challenges involved. If the Minister of State is not in a position to answer those questions today, I accept and appreciate that, but I ask him to commit to having the HSE correspond with me and the family in the coming days to outline the process regarding the emergency care fund, and the position on the appointment of a respiratory consultant who could potentially look after David's needs.

Deputy Alex White

As the Deputy acknowledged, I am not in a position to respond to the specifics of the two questions the Deputy posed. They are not unreasonable questions but I am not able to respond to him at this point in the kind of detail he would wish, particularly in regard to the various personnel involved. I repeat the Department of Health has discussed Mr. Garvey's case with the HSE with a view to senior officials having an early meeting, as I mentioned, with the family to develop a plan for their son's future care. A commitment has been made for such a meeting to take place next Tuesday, 15 April, and it is intended that it would be attended by Mr. Pat Healy, the relevant national director of the HSE, a very senior official in this area. It seems that would be an appropriate opportunity for the family, Mr. Garvey and perhaps the Deputy on their behalf to seek perhaps more specific responses on the questions the Deputy raised. There is no doubt there is a significant resource commitment associated with the proposed move.

I am not aware of the existence of the two different estimates the Deputy outlined. This is also something which could be pursued. As has been acknowledged, the needs are complex and generally in circumstances such as this a person is cared for in an intensive care setting. Therefore, what is proposed here needs to be pursued in detail with the HSE, and next Tuesday's meeting is the right place to do this.

Child Care Services Funding

Deputy Robert Troy

I am grateful for this opportunity and I thank the Minister for coming to the House. I welcome and compliment the Minister on the announcement of €2.5 million for community groups, albeit a reduction on what was announced in 2013 and 2012. I wish to speak about the unfairness, inequity and inequality of the scheme announced for the child care system that is in place. We must be realistic about the model that exists. A total of 70% of all services are privately operated and the State depends on these services. If we introduce policies that are inequitable towards the largest part of the sector we run the risk of these becoming unsustainable and closing down. If this happens, who will pick up the shortfall?

Will the Department explore the trend over the past four or five years regarding the number of community not-for-profit operators and private operators that have commenced and ceased trading? It would be interesting to note the figures. I am not speaking about large chain operators. I am speaking about small service providers such as Waddlers and Toddlers in Rathowen in County Westmeath or On Cloud 9 in Mullingar, where the owner operator is in charge. I could give a range of other examples from my constituency and I am sure such services also exist in the Minister's constituency. Private operators are essential in the communities where they operate because no community facilities exist. These small private operators are expected to adhere to the same standards as community operators, and rightly so, with regard to the adult-to-child ratio, environmental issues and health and safety issues. All regulations must be adhered to and rightly so. However, these operators cannot avail of community employment schemes or the community child care subvention scheme and they cannot fund-raise to make up the shortfall. They compete with non-regulated private services such as childminders, and it seems the Minister has no intention of regulating these, so they are at a disadvantage.

We must remember that when the State made significant investment in the services it did so proportionately. Is it the case, despite the fact the State depends on these services, that they make up 70% of all services nationally and that the State has already significantly invested in them, that we will no longer support them? This policy runs the risk of driving up the cost of child care at a time when we speak about what policies we can implement to reduce its cost. Is it empty rhetoric on the Government's part about supporting parents who wish to return to work and reducing the cost of child care? This policy flies in the face of it.

I do not suggest private operators should qualify for the same level of funding as community operators, but they should be eligible for a proportionate amount of funding based on the size of the service they provide. The State depends on the services they provide.

Minister for Children and Youth Affairs (Deputy Frances Fitzgerald)

I thank Deputy Troy. I wish to put the facts on the table. All capital funding for child care services was cut in 2008 and no new child care capital funding was made available in that year, 2009, 2010 or 2011. It was not made available until 2012 and 2013 when I reopened the child care capital funding schemes. Absolutely no capital went into child care in recent years. Fortunately I was able to reverse this situation two years ago.

Given the extensive infrastructure that existed, it was absolutely clear there would be a need to provide capital support to public and private child care providers, which is what I have done. In 2012 I provided €6 million in capital grant funding to 290 private and community not-for-profit child care services. The 2012 funding provided support to child care settings to address remedial maintenance, renovation work on buildings, and equipment for early education and child care services. It was very much welcomed by public and private providers. In 2013 I provided €2.75 million in capital grant funding to 671 private and community not-for-profit child care services. This covered small grants for accessibility, maintenance work, natural outdoor spaces and critical works to ensure buildings are fit for purpose under the child care regulations.

Having operated different schemes in 2012 and 2013 addressing different areas of need, and having learned from each scheme, I decided that for 2014 we would focus on another area in need of help, namely, the repair, maintenance and upgrade of community and not-for-profit child care services, which clearly needed support. On 12 February Deputy Troy tabled a parliamentary question asking me to introduce large-scale capital grants for child care, particularly for the community sector. The Deputy recognised that the community sector needs capital funding, and there is no question about this.

In introducing various capital programmes I had a range of different criteria for each year. This year I am focusing on community child care services, which play a major role in ensuring that disadvantaged and low-income families have access to high-quality and affordable child care as they provide access to the community child care subvention scheme, for which the Department provides approximately €45 million. We need to invest in these facilities to ensure they can be maintained in the necessary way.

I have announced that later this year I will launch another scheme for next year. This announcement will include the public and private sectors. I am aware of the difficulties experienced by providers in the private sector, but at present it is vital that this funding is directed towards addressing the immediate issues in the community sector. As I pointed out, there is considerable investment in the sector already and we must protect it so the service is maintained for those who are dependent on it. Later this year I will announce further capital investment, which will be open to both sectors.

I received feedback from the sector following the disbursal of the capital grants last year that amounts were needed to deal with structural issues in the community child care sector and that it would need this type of investment to ensure the facilities were up to the standards we expect.

Deputy Robert Troy

While I thank the Minister for her reply, she failed to acknowledge the huge capital investment made in the period between 2000 and 2008. As she started at the downturn in 2008, she failed to acknowledge the huge capital investment made in both community and private facilities. Moreover, investment in the latter was made on a proportionate basis. I accept and no one questions the need for support for community services. I am well aware that I submitted the parliamentary question in question - I was the person who submitted it - but my question is, why has there been a deliberate change of policy away from supporting the private services that make up 70% of all services providing child care in Ireland? The Minister herself, by virtue of her inclusion of such services for the past two years, has acknowledged clearly the vital role they play in the provision of child care in the State. While I welcome that the Minister is thinking about supporting such services later in the year for next year, if they are not supported in the future, they will become unsustainable. If they become unsustainable, who will take up the shortfall? Where will the State be able to provide services in advance of the closure of such private services? I ask again, what was the rationale for the deliberate exclusion this year of private services from the capital grants? I reiterate the services make up 70% of the overall provision of services within the State. What does the Minister hope to achieve this year by the exclusion of the private sector in this regard?

While I do not expect the Minister to have this information to hand, I seek information on the trend over the past four or five years in respect of the numbers of openings and closures of community not-for-profit groups versus the numbers of openings and closures of private groups. When deliberating on eligibility for the scheme, did the Minister consider the trends over the last number of years by ascertaining which sector has experienced closures and openings in the largest percentage terms?

Deputy Frances Fitzgerald

I also wish to highlight that in the funding decision announced last week, €250,000 each will be made available to parent and toddler groups and to the childminding development grants scheme, which also are two highly important initiatives. If I may, I will reframe the manner in which the Deputy is describing the scheme by stating the Government is targeting a sector that requires support this year. Clearly, over the past two years, where there was capital investment, the schemes were targeted at particular areas. It has been identified that refurbishment is needed in the community sector in particular and that there should be a targeted scheme for this year. That is what this is. It is not a question of seeking to exclude any particular sector but is about targeting as resources are available. Were unlimited resources available, clearly one would be able to do everything all at once. However, given that this is not the case, the Government has targeted the money available this year to support the refurbishment of the community public sector, based on the needs in that area at present. However, I certainly am not excluding in any way the provision of support at a future date to the private child care providers, as I provided during the first two years as well.

Dáil Éireann debate -
Tuesday, 8 Apr 2014