The availability of Spinraza has been debated in this House for a long time. Some time ago, many of us met the children and families who desperately need this drug to help treat spinal muscular atrophy which, as the Taoiseach knows, is a muscle-wasting disease. This country and Estonia are the only European Union countries that have not approved this drug for reimbursement. The National Institute for Health and Care Excellence, NICE, in the United Kingdom has cleared its availability in the United Kingdom and Northern Ireland for patients. The Minister wrote to Deputies indicating that a decision was expected by 14 May but "that is not now the case". He added that the assessment is receiving "priority attention" but I do not know what the phrase "priority attention" means any more as this has been receiving "priority attention" for a long time. We are now faced with the prospect that children and families in Northern Ireland will, thankfully for them, be in a position to access Spinraza while in the Republic of Ireland they will still be left short. That is not good enough given the major anxiety, stress, damage and morbidity that arises from the condition.
Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation
I thank the Deputy for raising the matter. Like him, I met some of the families waiting on approval of this medicine. As people in this House know, it is not a political decision as to whether a particular medicine should be approved for reimbursement. Under the Health (Pricing and Supply of Medical Goods) Act 2013, this House decided that decision should be made by the Health Service Executive, HSE, and that is the case. So far, 23 new medicines have been approved by the HSE for reimbursement this year and I understand negotiations are still under way on Spinraza.
Last night, the House debated Second Stage of Sinn Féin's Bill to provide for the constitutional right of every citizen to adequate, secure and affordable housing, a key recommendation of the Constitutional Convention. Fine Gael and its partners, Fianna Fáil, have chosen to say no to that proposal and both parties have stated that they will not support the legislation when it is voted on tomorrow afternoon. In the midst of an unprecedented housing crisis, that is an absolutely despicable position for the Government to adopt, particularly considering the support for this legislation by the United Nations special rapporteur for adequate housing.
The Raise the Roof demonstration will take place here in Dublin next Saturday and it will demand real solutions to our housing emergency, including the constitutional right to a home. I am asking the Taoiseach in advance of that demonstration to do the right thing and change his mind on the matter. He should support the provision of a constitutional right to a home. I also urge Fianna Fáil, which has much to say by way of criticism of the Government's housing policy, to step up and support this very basic and necessary demand.
The Deputy forgot to say we are Government partners.
As I said before in the House, I have an open mind on the question of including a right to housing in our Constitution, although I am also very aware from research by the Mercy Law Resource Centre and others that there are approximately 83 countries in the world that either have a statutory right to housing or a constitutional right to such housing. All of them have issues with homelessness and in some cases they have shanty towns, favelas and all sorts of things that I am thankful we do not have in this country. I am not entirely convinced it is the real solution, to use the Deputy's term.
The matter should be properly considered by an Oireachtas committee and not just rushed through the House. We must understand what would be the implications and we should never change our Constitution lightly. We need to understand the implications and how they might be interpreted by the courts, and we must also know what would be the costs and how they could be met. We must also work out whether it would make a difference in practical terms for people in real need of better housing. In the debate, the Sinn Féin contributors have not made convincing arguments in that regard.
Since January, the members of the National Ambulance Service Representative Association, NASRA, have been taking strike action over six days to try to achieve recognition of that union. These people are members of the single biggest union within their sector. Other unions have members but they do not have as many as NASRA. Its representatives are here today because they are taking part in a day of protest to demand that the Government talk to them and give them the recognition they deserve. The Constitution gives these people the right to join a trade union but it does not mean it can force a Government like Fine Gael - an anti-worker Government - to recognise the rights of these workers.
We call on the Government and the HSE to talk to the only party in this dispute that they have not yet spoken to. There has been dialogue between the Government and the HSE but there has been no dialogue with the men and women here today to protest. I also call on the existing unions for the sector in the Irish Congress of Trade Unions to give their sisters and brothers the right to join the union of their choice. In the 21st century, the least that could be granted to Irish workers is the right to join the union of their choice and be recognised for doing so.
A number of Deputies are offering on the same matter so I ask them to stick to the allocated time.
For the second time, while the paramedics pack the Gallery, the Taoiseach is not here. This time he chose not to be here by leaving the minute he heard what the question was about.
That is not true.
The Deputy is not being fair.
It is untrue.
Why does the Taoiseach and Government, particularly the Minister for Health, Deputy Harris, continue to play hardball with these workers? Why do they continue to endorse the union-busting tactics of the HSE? Why do they continue to refuse to deal with the Psychiatric Nurses Association, PNA, and NASRA? What are they scared of when it comes to workers being allowed to be represented by the union of their choice? It is a very serious position for every trade unionist in the country when the State is effectively trying to dictate to workers which unions they can be part of and which unions they cannot join. It is the refrain we are hearing. Those people will be outside today at 1 p.m. and their banners will state "Our union, our choice". The Government should deal with these people instead of forcing them to come back here again and again.
I also raise the matter of the ongoing one-day strikes by ambulance personnel. I understand there may be another one-day strike by the end of May. As all of us as politicians know, this dispute seriously affects the provision of front-line emergency services. It is unprecedented and unwarranted. These people simply want to establish a branch of the PNA and they have been asking for it for nine years. They want to be represented by the PNA and not by the union that is acceptable to the HSE. As other Members noted, these people are demonstrating in Dublin today but they do not want to be here. We met them this morning and they have come from all parts of the country, including Donegal. They want to be on duty, providing essential services. They want to do what they are good at. I ask the Minister to use his good offices to ensure their requests can be considered.
It is vital that the Minister meet the ambulance crews. It is true that they do not want to be here and would prefer to be at work. They want to serve the people of the country. Will the Minister correct the record of the House as he indicated in reply to a parliamentary question that he had not received correspondence from a number of Members requesting that he meet members of the NASRA organisation? That is incorrect and he received such correspondence from Deputy Joan Collins, which was signed by me, Deputy Pat The Cope Gallagher and other Members.
It is an absolute disgrace that we must again take to our feet because of this very simple demand. There are many burning issues across the State and this should not be one of them. This is about a group of almost 500 workers who are asking for the right to be heard. This is not a dispute about pay or conditions; it is about the simple right to be heard. Sinn Féin has published legislation on this matter. The Minister knows as well as I do the work done by these individuals, the seriousness with which they do their duties and the effect it can have when, unfortunately, they cannot save a life. I have witnessed that at first hand. They are diligent and professional in their job. This is about giving these people the right to be heard and to choose the trade union that wants to represent them in negotiations with the HSE. Do not make them come to the Dáil again and force them to strike for a day. Do not force the issue further. The Minister should stand up and do the right thing by stating very clearly that those paramedics who are valued by all of us when we need them will be valued in the form of allowing them to decide which union should represent them in negotiations with their employer.
I am sure the Ceann Comhairle will accept that the Taoiseach did not scarper away when Deputy Paul Murphy or Deputy Bríd Smith raised a question. He left to travel to Paris to attend a very important seminar on online hate speech after the terrorist attack in New Zealand which killed 51 people, as has been well documented.
I am sure he could have waited two minutes.
Presuming Deputy Paul Murphy is against hate speech, I am sure he will apologise for the slur on the Taoiseach.
To respond to Deputy Pringle, I certainly did receive a letter from Deputy Joan Collins, so if a written parliamentary question stated otherwise, I will write to the Ceann Comhairle about the matter. I received directly into my hand a letter from Deputy Collins and a number of other Deputies, including Deputy Pringle, about this matter, and I am absolutely happy to acknowledge that. I understand there are many different views on this matter within the ambulance service, among paramedics working in the ambulance service and within the trade union movement. I had asked my Department to engage with the HSE to try to find a way forward on this. I would like a way forward to be found. I will re-engage with my Department and have discussions with the HSE about this matter today.
On page 73 of the programme for Government, there is a promise to improve services and increase supports for people with disabilities. However, we have carers experiencing serious financial difficulties who will cease operations in 2020 unless urgent funding of €2 million per annum is provided by the HSE. RehabCare provides services in every county in Ireland to 3,000 people with disabilities, who are supported in 117 locations nationwide. The organisation also has excellent services across Cork south-west. Specifically, it supports 94 people with physical, sensory and intellectual disabilities and mental health difficulties in six different services delivered in Bantry, Castletownbere and Skibbereen. People from Clonakilty, Dunmanway and surrounding areas are using RehabCare services, which include day, residential, home and community supports and respite services. Respite services are delivered in Bantry but available to 41 people with disabilities from south-west and north Cork and Cork city, where 23 staff and five community employment workers provide these supports. Will the Government provide the necessary funding for RehabCare to continue this vital service?
This Government is continuing to increase the level of funding it is providing to section 38 and section 39 organisations. RehabCare provides excellent services for people with disabilities right across the country. If any organisation does not wish to continue to provide such services, it must give 12 months' notice. This is an important message to all our constituents, particularly people with disabilities, who should not be left worried about this situation. As Deputy Collins rightly said, I met RehabCare last week. I am due to meet the organisation again at 5 o'clock this evening to see if a resolution can be found.
I was pleased to hear the Taoiseach say earlier that he would welcome consideration by the Oireachtas Joint Committee on Communications, Climate Action and Environment of our national broadband plan and that any such consideration must be done in a timely manner, which I absolutely accept. I really want to support this deal. The more I look at it, however, the more I am left scratching my head wondering how a private developer can contribute €175 million in capital while we contribute between €2 billion and €3 billion, with the former ending up owning the asset. The Irish people are scratching their heads on this too. They just cannot get their heads around what we get from this. I have nothing against Mr. McCourt but he only has a small team. He does not have backup or big companies such as SSE behind him. The Department of Communications, Climate Action and Environment has a lot of skills in this area. I saw it deliver the metropolitan area networks, MANs, whereby the Department itself did the build-out and brought in the contractors. I am scratching my head and asking how we might win over the public and sell to them a deal whereby we pay all the money and someone else gets ownership. I just cannot get beyond this-----
I thank the Deputy. His time is up.
-----and I think it will be difficult for the Government too. Can the deal be changed as we start to investigate it in the Oireachtas committee? What flexibility do we have if we do this digging, which we should do? What is the chance of our changing the deal, either on the ownership end or some other end? Someone said last night-----
The Deputy's time is up.
-----that the deal is legally tied down now but I do not believe that is the case. I think we have a moment for change here before we sign a contract. Can the Minister for Communications, Climate Action and Environment, Deputy Bruton, confirm that this is the case?
Since the privatisation of Telecom Éireann, we have depended on the private sector to deliver high-speed broadband. This has been fine for 75% of the population but for 1.1 million people the private sector will not deliver. The Department engaged in an evaluation as to what the best way was to ensure we could provide that service. Very clearly, the best approach was for the State to provide 146,000 km of fibre by using the existing network of poles and ducts that are already in private ownership. This was the approach adopted. It was also clear that the best way to ensure that this network would be viable in the long term was to leave it to the private sector not only to design, build and operate but also to operate it in the long term without further recourse to State support. This company, at the end of the 25 years, will be a company with a turnover of €150 million. That is about one tenth of the size of Eir's turnover. It will be a relatively small company operating a network which required state aid to be put in place. We have evaluated the alternatives, every one of which is more expensive, riskier or does not deliver. Clearly, one cannot rewrite the competition rules. We have had a competition, we defined certain terms of that competition from the outset and we conducted the system on that basis. There are therefore fundamental constraints as to what alternatives one can look at-----
I thank the Minister. We cannot have a detailed debate on the matter. His time is up.
-----without starting afresh, abandoning this tender and starting a new procurement process.
Sam and Glen are two boys who live in my constituency. Both of them suffer from spinal muscular atrophy. It is heartbreaking to see because their condition is deteriorating and there is a drug, Spinraza, which would assist them. The Taoiseach said earlier that a decision on this had been due and that urgent priority had been given to the matter. These families were living in that hope at Christmas when exactly the same words were spoken about the matter being given urgent priority, an assessment being under way and so forth. Almost six months later, the issue has not been resolved. I have raised this with the Minister before, and the Taoiseach has responded to similar questioning. He specifically said he was acting in accordance with the legislation, namely, the Health (Pricing and Supply of Medical Goods) Act. If this legislation is impeding us in dealing with this matter, we need to amend and change it. It is not tolerable or fair that the only country in Europe in which these children cannot receive this medication is Ireland. We will work with the Minister to change the legislation but these families are holding on week by week, meeting by meeting. As I said, at Christmas there was a real expectation that this would be dealt with, and that has not occurred. I therefore appeal to the Minister, if he must work within the legislation and if the legislation is the obstacle, to change it.
I thank Deputy Curran for raising this matter and acknowledge that he raises it quite consistently regarding the family to which he refers. I also acknowledge that this is a time of huge anxiety for the families impacted and worried about their children. I spoke directly to the new Director General of the HSE yesterday about this to inquire as to the current position. My understanding is that a decision will be delivered shortly. We are genuinely making progress on this matter. I do not want to say any more that could jeopardise this situation but there is a new offer from the company, of which the Deputy is aware. The HSE needs to assess it, and it takes two to close a deal, but I really want this to be resolved quickly. The HSE is aware of our collective view on the matter.
Pages 53 to 65 of the programme for Government commit to improving healthcare for our citizens. In this context, I raise the issue of Kerry University Hospital where, as the Minister for Health will be aware, a review was carried out last year on 47,000 scans. Following the review, 11 patients were identified as having either missed or delayed diagnoses. Following a meeting on Monday with hospital management, the five Kerry Deputies were informed that of these 11 patients, seven are no longer with us. What plans does the Minister have to follow up on the commitment he gave the Deputies representing Kerry before Christmas to visit Kerry University Hospital in order to show some compassion and support for the families of those who are no longer with us and indeed the remaining patients who are still receiving treatment? Unfortunately, this and many other issues are leading me to believe that Kerry University Hospital is the forgotten hospital of the south west. We need the Minister's commitment and support to reassure these families that support is available for them and the hospital has not been forgotten.
It has certainly not been forgotten and people like Deputy Brassil ensure that is the case by raising these important matters. I express again my heartfelt sympathies to the patients and families involved. I acknowledge that this was, and for some continues to be, a time of great uncertainly for patients and their families and I appeal, as the Deputy has done, for their confidentiality to be respected. As the Deputy knows, there was a review in line with HSE policy and the final report was released in December 2018.
Open disclosure has taken place with all of the affected patients and their families. I am advised that all patients have received or are receiving the appropriate additional care that they may need and that support is being provided by the South/South West hospital group. A serious incident management team has made 16 recommendations and implementation is underway. I will send the Deputy a note with a more comprehensive answer than time allows here.
My question is on schools. I am confident I will get an answer since we have the Minister for Education and Skills, Deputy McHugh, and the former Minister in that Department, Deputy Bruton, sitting together. They will both be aware of St. Teresa's special needs school in Ballinasloe in County Galway which caters for 21 children with disabilities. The school's insurance costs have risen by 700% in the last three years, from a few thousand euro to €26,000. The school has a few weeks to pay that insurance but it cannot meet the bill. Can we bring schools such as this under the State Claims Agency or what can we do? I pose that question to the Minister and the former Minister. I am sure they will have a positive answer that I can bring back to the parents and the people involved in the school. It is a real crisis on our doorstep.
I call Deputy Durkan on the same matter.
I raised a similar question yesterday. This matter is getting very serious now. The dramatic increases in insurance premiums being demanded are affecting community-based organisations, some of which are public and some private, as well as a number of special needs schools. Might it be possible to refer this issue, in the short term, to the Financial Regulator? I ask that because there has been no indication as to why the premiums should be increased by up to 1,000%, as has happened in some cases. The clear indication is of an attempt to put people out of business or withdraw insurance cover altogether.
I am aware of this issue. The issue of increasing insurance premiums is starting to emerge as a problem more frequently in respect of special schools. Regarding St. Teresa's special school in Ballinasloe, I have found out that it is not even in a position to make instalment payments. It has to be done in one fell swoop. This is a very serious matter. We are working with the State Claims Agency, the Department of Public Expenditure and Reform, DPER, and with the National Association of Boards of Management in Special Education to seek a resolution. We are, therefore, taking this issue very seriously.
Deputy Naughten met with me regarding insurance costs yesterday and Deputy Eugene Murphy has raised it today regarding St. Teresa's special needs school. As Deputy Durkan has pointed out, however, this is part of a wider issue. If there are ways we can intervene, we will do so. That may be in the manner proposed by Deputy Durkan. I think the timing of the European Commission intervention is significant as well. These rates of increase in insurance premiums, which I am being told about, are unaffordable and we have to do something about it.
The European Commission yesterday announced an investigation into the insurance industry in Ireland. Two Private Members' motions have also been passed by our party regarding this issue in the last year. It is now time that the Government, and everybody, took this issue seriously. There has been much talk about what is being done, yet evidence of rising costs has been produced on the floor of this House in recent weeks in respect of summer festivals and voluntary groups setting out their stalls for events. The insurance industry is choking the country. I know of an example where one person's insurance has gone from €1,000 to €24,000 in a specific area over four years. That is crazy. I do not believe the Government is taking this whole issue of insurance seriously. It is time that it did.
I assure Deputy Michael Moynihan that the Government is taking this issue very seriously. The Minister of State, Deputy D'Arcy, has been taking responsibility for this. He has led an initiative that has, from memory, 33 actions, including legislation actions, to bring about change in this area. There has also been an improvement in the operation of the Personal Injuries Assessment Board, PIAB. Issues remain to be addressed, however, and the Minister of State is continuing his work. We need far greater data transparency from the insurance sector so we can see exactly what is happening.
The EU has stepped in to raise questions about whether the data sharing initiative is acting to impede competition. While no findings have been made at this point, that is an important investigation. I assure the Deputy that we will be continuing to scrutinise every aspect of this issue, including the legal costs, the fraud elements and the data sharing. All of those aspects are being scrutinised by the Government with a view to resolving this matter. As the Taoiseach stated earlier, however, it is the insurance companies that must decide what premia they quote. The Government cannot tell insurance companies to set premia, so we have to operate on the framework to make it as effective as possible.