The first matter to be considered is in the name of Deputy Rock who wishes to discuss cross-agency progress in dealing with the misuse of scramblers and quad bikes. Does the Deputy have a quad bike?
Saincheisteanna Tráthúla - Topical Issue Debate
Road Traffic Legislation
I do not. I own an electric scooter and must declare my interest in that regard. Scooters are not the cause of disruption in my constituency. However, quad bikes and scramblers are causing great disruption to many communities adjacent to the perimeter of the M50. Deputies who represent the constituencies of Dublin Bay North, particularly Darndale and Coolock, Dublin North-West, especially Finglas and Ballymun, Dublin Mid-West, Dublin South-Central and Dublin South-West, which all have communities with green spaces, would be familiar with the scourge that scramblers and quad bikes pose. People using these vehicles terrorise others in parks and on roads. Gardaí are, naturally, reluctant to chase them because that could result in accidents. Deputy Ellis of Sinn Féin brought forward a Private Members' Bill some weeks ago to redefine public spaces in view of the fact that parks are not covered under the road traffic legislation. He contested that they should be covered under that legislation in order to allow for pursuit of these vehicles. The Office of the Attorney General advised, and the Government and Fianna Fáil accepted, that is not the approach that we should take. Nevertheless, an approach should be taken.
The categorisation of good legislation is that it fulfils the objectives it sets out to achieve and that it does not cause any unforeseen negative consequences. My understanding of the advice is that, while the intention behind it was good, Deputy Ellis's Bill may unfortunately have given rise to unforeseen consequences. Nevertheless, that does not mean we should not do anything about the matter to which I refer. The Minister for Justice and Equality, Deputy Flanagan, has been active in that regard in setting up a cross-agency grouping to discuss the issue and to thrash out what solutions, legislative or otherwise, should be considered in respect of this scourge.
I am seeking an update on the progress made to date and a roadmap as to where we are going. This problem has been ongoing for a long period. I assure the House that, come Christmas, a new wave of quad bikes or scramblers will be given to children and teenagers as presents. They will be given in good faith but they will be misused nevertheless. This issue will arise again in Dublin and in other urban areas. Very predictably, the type of behaviour to which I refer happens every Christmas and also during the summer months. I would like to see a roadmap and some tangible proposals and solutions outlined in order that we do not simply go through the motions again for another year. I welcome any progress the Minister of State can report and any timeline that he can set out.
I thank Deputy Rock for raising this important public safety concern affecting a number of communities in his area and in other parts of the country. He will recall that the Minister for Justice and Equality, Deputy Flanagan, responded to a parliamentary question on the same issue on 19 February last. I pass on the Minister's apologies to the House. He is in the Seanad and could not be here. He did want to be present because this is an important matter. Deputy Rock would like to have him here as well. I share this update and reply on the Minister's behalf.
The Minister shares the Deputy's concern regarding the misuse of scramblers and quad bikes. The Minister's concerns have been noted many times on the record of this House. The effects of anti-social behaviour arising from the use of these off-road vehicles can be devastating and life-changing, as highlighted by Deputy Rock and Deputy Ellis on RTÉ's "Today with Sean O'Rourke" show earlier. It is because of a horrific incident in Darndale Park on Saturday, 9 June last that we have a gentleman left in a vegetative state and whose wife was also seriously injured. On behalf of the Minister and myself, I extend heartfelt sympathy to Ms Kotsinian and to her and her husband's families on this tragic accident.
This incident highlights how the misuse of scramblers and quad bikes can profoundly affect an entire family and not just the people who have been injured. We are also sadly reminded of the fatalities that have occurred in recent years as a direct result of the misuse of these vehicles. Deputy Rock will appreciate that while the Minister has no direct role in the prevention of anti-social behaviour or the enforcement of road traffic legislation - these being operational matters for the Garda Commissioner - the impact of the misuse of scramblers and quad bikes is simply unacceptable for families who should feel safe and secure in their local communities. That is why he has asked his officials to focus on this public safety issue.
The Deputy will be aware that the Department convened a cross-agency meeting on 25 April 2018 with key Departments, An Garda Síochána and the Road Safety Authority. The purpose of the cross-sectoral meeting was to ascertain whether there are additional legislative or other solutions, which can assist in dealing with the misuse of scramblers and quad bikes more comprehensively, with a view to determining responsibility and timeframes for implementation of solutions identified. Deputy Rock is looking for a timeline and that is what the Minister is trying to achieve as well. The Department of Justice and Equality has consulted a considerable number of other Departments and public bodies in recent months in order to identify a number of relevant items of legislation. These have been brought to the attention of the Office of the Attorney General to determine whether any legislative amendments are necessary to assist in curbing activity insofar as scramblers and quad bikes are concerned without giving rise to any unintended negative legislative consequences. I am pleased to confirm that the Department received formal legal advice from the Office of the Attorney General just this week. The advice is comprehensive in nature and is now being carefully considered by officials in the Department, together with the Department of Transport, Tourism and Sport, in the context of road traffic legislation. The Department has met separately with local authorities and participates in a task force established by South Dublin County Council to consider the public order implications of the misuse of these off-road vehicles at a community level. The task force has met on two occasions to date and is scheduled to meet again on 14 November.
The task force is a useful and important forum and its discussions informed the Department's correspondence with the Office of the Attorney General. On behalf of the Minister, I would like to take this opportunity to reiterate the Minister's commitment to supporting actively any positive actions that can be pursued in response to the serious public safety issues arising from the misuse of scramblers and quad bikes. When the Department has had an opportunity to study the legal advice we should be able to give Deputy Rock a better update on timelines.
This is a serious issue for many of the communities affected and for the two individuals whose lives, as the Minister of State outlined, have been tragically affected by the incident in the park. Some 190 people have been injured, some severely, and there have been some deaths as a consequence of the misuse of these scramblers and quad bikes. They are a blight on many communities and areas throughout the city. That is the case for those directly affected and for those afraid to go to our parks or outside of their front doors. This is an issue affecting and blighting many communities, particularly in working-class areas and communities right across Dublin. I urge the Minister of State to take this seriously and to listen to the advice. He should also listen to the Deputies from all of the parties in this House saying this is a serious issue that needs to be considered. Some action needs to be taken before we have another unfortunate incident.
I accept the update from the Minister, via the Minister of State, in the spirit in which it is intended. It seems encouraging. I am glad to see we have some advice on the table from the Office of the Attorney General. I hope we will be able to act on that advice, bring forward something to curb the misuse of these vehicles and curb the inappropriate behaviour that we see daily and weekly. If our intention is to stand up for working-class communities and for areas that are blighted by these vehicles, then we need to act on this and act on this now. I thank the Minister of State and I look forward to updates in due course.
The Department has also reached out to a number of local community groups in the context of positive engagement fostered with local communities. Department officials are also engaging with a number of overseas jurisdictions to inform further the multi-pronged approach required to deal with the serious anti-social and dangerous behaviour associated with the misuse of these vehicles. At the previous meeting of the task force in September, local authorities agreed to log all complaints and incidents regarding scramblers and quad bikes in open spaces and parks during the week beginning 17 September. That is to attempt to gauge the appropriate scale of the issue. The outcome of that exercise will be discussed at next week's meeting of the task force.
Arising from the task force's meetings, the road safety officers of each of the Dublin-based local authorities have agreed to organise a public awareness campaign urging parents not to purchase scramblers and quad bikes as Christmas presents for minors. In addition, the Road Safety Authority has agreed to bring forward a similar safety campaign.
The Minister echoes the Deputy's request on radio this morning for parents not to buy off-road vehicles for their children as Christmas gifts.
Road safety is a shared responsibility for all road users, not just An Garda Síochána, the Road Safety Authority and other State bodies. The Minister and I urge anybody with information on this type of anti-social behaviour to contact local gardaí or the Garda confidential line on 1800 66611, a monitored freefone line that allows members of the public to contact An Garda Síochána with information of a confidential nature, or Crimestoppers on 1800 250025.
On behalf of the Minister, I acknowledge the genuine commitment of all agencies involved in endeavouring to effectively resolve the public safety concerns associated with the misuse of scramblers and quad bikes. The Minister will continue to closely monitor the cross-agency engagement. I again thank Deputy Rock for raising this matter.
I understand Deputy Burton is on the way to the House so we will return to her matter.
Medicinal Products Availability
This is the second time in a relatively short period in which the Minister has not been present to answer a Deputy's questions. I protested strongly on the previous occasion, when the Minister of State, Deputy Finian McGrath, presented, and I now see the Minister of State, Deputy Catherine Byrne, will be replying. I respect the Minister of State greatly but this is simply not an acceptable practice. I had understood that there is an obligation on the primary Minister to present and answer a Deputy's Topical Issue when selected. I very much regret what is happening. It is most unacceptable. I am sure the Minister of State will convey my comments to the Minister, Deputy Harris.
I recently wrote to the Minister about Spinraza, or nusinersen, seeking a one-to-one meeting with him. Not only has he not been in attendance on the two occasions on which I sought to address this very important matter, he has also written to me declining my request to meet him to address it. That is most strange. Here I am again seeking to establish exactly how things stand with respect to the need to approve the drug Spinraza - or nusinersen, to give it its formal name - for HSE reimbursement. This is absolutely a must and it should be done without further delay. I understand there have been direct talks with the manufacturing pharmaceutical giant, Biogen, which makes Spinraza. I also understand that Ireland has been offered the same arrangement as was negotiated by the BeNeLuxA group of states, namely, Belgium, Netherlands, Luxembourg and Austria. We have now joined the BeNeLuxA initiative.
It is my view, which I would have put directly to the Minister, that any negotiation such as that specific to Spinraza with Biogen in this instance, or in any other comparable negotiation, should seek to widen the scope of engagement to take into account all possible areas for address, including what other benefits could be secured in our collective interest as a people. I speak of exploring what other financial savings could be achieved by examining other product lines manufactured by Biogen. It would include biosimilars relating to other branded drugs that we currently have access to in this jurisdiction. The focus is on Spinraza but significant gains could be made by widening the scope of the engagement with Biogen. There is the potential for real and substantial savings to be made not only with the initial cost of Spinraza and the significant reduction that the BeNeLuxA negotiation has made available to us but also through other savings that could be made by replacing branded products that are currently available and that are prescribed by general practitioners. They could be replaced with biosimilars currently produced by Biogen.
I apologise as I had not realised the time allocation had elapsed. I am making the point that it is within the gift of the Minister, the Department and the HSE to ensure this exercise can bring a financial reward that could see us reach a position where there would be no additional cost to the public purse because of an imaginative and thoughtful approach to the project.
I apologise for the Minister not being here. The last time I saw him he was attending a committee meeting. He must be still there. I have been asked to take this Topical Issue on his behalf and I thank Deputy Ó Caoláin for raising it.
Nusinersen or Spinraza is indicated for the treatment of spinal muscular atrophy, SMA, a disorder characterised by progressive muscle atrophy and weakness. The Minister appreciates that this debilitating and progressive condition places enormous pressure on SMA sufferers and their families and carers and that access to potentially beneficial drug treatments is an extremely important issue for people with spinal muscular atrophy. As the Deputy is aware, the Oireachtas has put in place a robust legal framework in the Health (Pricing and Supply of Medical Goods) Act 2013, which gives full statutory powers to the HSE to assess and make decisions on the reimbursement of medicines, taking account of a range of objective factors and expert opinion as appropriate. The Act gives the criteria to be applied in the making of reimbursement decisions, which include the clinical and cost-effectiveness of the product, the opportunity cost and the impact on resources that are available to the HSE. In reaching its decision, the HSE will examine all relevant evidence and will take into account such expert opinions and recommendations that are appropriate, including from the National Centre for Pharmacoeconomics, NCPE.
The HSE received an application for the reimbursement of Spinraza in July 2017. The NCPE conducted a health technology assessment on Spinraza and did not recommend the reimbursement of Spinraza at the submitted price. The statutory assessment process involves a health technology assessment followed by detailed consideration by the HSE expert groups on new drug therapies, including the technology review group for rare diseases and the drugs committee. The assessment is particularly centred on reviewing the evidence of the clinical effectiveness of this new drug therapy, for example the benefits for patients undergoing clinical trials. The application is currently undergoing the final stages of assessment and the various reports are due to be considered shortly by the HSE leadership team, following which the final decision will be notified.
In July 2018, two members of the BeNeLuxA initiative on pharmaceutical policy, Belgium and the Netherlands, completed a joint negotiation for the reimbursement of Spinraza. However, this joint negotiation process commenced when Ireland had only opened negotiations with Belgium, the Netherlands, Austria and Luxembourg with a view to joining the existing collaboration between these four countries. As a candidate country, Ireland was not notified due to confidentiality arrangements that negotiations were occurring for the reimbursement of Spinraza and we were not party to the negotiations and proceedings that occurred. I understand the Deputy's frustration.
We are talking about 25 seriously ill children and double that number of adults who would benefit directly from access to Spinraza. I will speak to the BeNeLuxA initiative and the negotiation process available to Ireland for Spinraza.
It would mean that each vial, costing €83,000 each, would cost less than €50,000 as a result of the BeNeLuxA position that gives a significant saving of €33,000 per vial. In year one, six vials would be used and in each subsequent year it would be down to three vials per year in relation to those who would benefit directly from it.
While it is still a considerable sum, Biogen, like many of the other pharma giants, is a significant player in the production of many products, some branded and some biosimilar. We do not appear to have a biosimilar strategy in this State but I am asking the Minister of State to convey to the Minister for Health that from my examination of Biogen's range of products, there is the potential to engage seriously with it on biosimilars for other drugs that are currently costing us significant sums annually in tandem with the negotiation on Spinraza. A saving can be negotiated with Biogen that would eliminate the total cost of the introduction or approval of the reimbursement of Spinraza in this State. That would mean a lot for the children, families and parents in each of these cases.
I appeal to the Minister of State as a mother and a grandmother to impress on the Minister that the answer that I have received here today is not worth the paper it is written on. I have given more information than he has been willing to share in recent times and he has not yet presented in the House to address this issue. I appeal to the Minister of State to impress on him the importance of a decision in the favour and interest of these children.
I reiterate that the HSE is the body that makes the decision on the reimbursement of medicine under the Health (Pricing and Supply of Medical Goods) Act 2013.
I understand the Deputy's concerns and his interest in this. I listened carefully to what he has said and I am a mother and a grandmother so I understand that when children are ill we must do our best and beyond our best to look after them. In many ways they are the jewel in all of our crowns as parents and grandparents. I will appeal on the Deputy's behalf and on a personal basis to the Minister to look at some of the recommendations and points that the Deputy has raised when I get a chance to talk to him this evening or tomorrow. I will appeal to him on the Deputy's behalf to meet with the Deputy at some stage to discuss further some of the points the Deputy has raised with me today. Unfortunately I do not have the same level of knowledge on this as the Deputy so I am reluctant to speak further on it.
The matter will be brought to the attention of the Minister by the Minister of State.
The general issue that Deputy Ó Caoláin raised is of concern to me. We have been trying to arrive at a point where Ministers who have Topical Issues tabled to them would correspond with my office or with the Deputy concerned directly to let them know whether they will be available or not to take the Topical Issue, thereby giving the Deputy the opportunity to defer the Topical Issue to another stage. That is what we all want to see happening. It is important that we accept that Ministers have a lot of responsibilities and that they cannot be in two places at once, but equally they have to treat the Topical Issues debate here seriously.
Disability Services Funding
I lend my support to Deputy Ó Caoláin. This is my third or fourth Topical Issue debate in a row where I did not have the line Minister present. I had an urgent matter in Wexford this morning and I drove back up but I may as well have phoned it in as come here to debate the issue.
I raise the issue of St. Aidan's services in Gorey and I understand that this voluntary organisation is threatened with imminent closure. St. Aidan's services in Gorey provides day, residential, respite, preschool, elderly and training services across Wexford and also provides meals on wheels. It has been in its current location for 36 years and was established in 1968. It has over 300 service users per annum and has 130 staff, yet this week the staff will be paid on a delayed basis because of what St. Aidan's says is a shortage of promised funding from the HSE.
The service users, their families and the staff have been informed that the centre is in imminent danger of closure unless its finances are addressed as a matter of urgency and the issue has reached a crisis point. As the Minister of State can imagine, the information that has been provided has caused a huge amount of distress to the staff, the service users and their families.
I am told that a core deficit was identified in 2016 and the HSE agreed in 2016 to provide funding to the organisation to address it. The deficit arose as a result of the organisation providing HSE services without HSE funding. Additional costs have been incurred as a result of upgrading that was required to meet Health Information and Quality Authority, HIQA, standards.
This year the HSE has a budget of €17 billion and the money required to keep vital services open and 130 staff employed is a minuscule part of that. The high quality experience of the staff would be irreplaceable should this service shut down and the cost of providing an alternative service to service users will be far in excess of the money that is not being provided.
St. Aidan's in Gorey is not looking for special treatment, it is simply looking for fairness and for the HSE to honour the agreement it says the HSE made with it. St. Aidan's provides outstanding care in Gorey and also to the service users in Enniscorthy, New Ross, Wexford town and throughout the south east.
The latest information I have received this week is that the staff who were meant to be paid today will not be paid until tomorrow but the HSE has come and looked for a €100,000 rebate to be paid in December which would be deducted from December's payment. I am being told that effectively means there will not be enough money to pay the staff in December.
This issue has been going on for four years, various people have raised it during that time and there is no resolution in sight. It is a matter of urgency that this matter is addressed. It has reached crisis point and as I understand it the service is about to collapse.
I apologise that the Minister of State, Deputy Finian McGrath, is not here and I am taking this Topical Issue on his behalf. As Deputies know, I am a Minister of State at the Department of Health and I will, when asked, try to facilitate as many Ministers and Ministers of State as possible and come here on their behalf.
On behalf of the Minister of State, Deputy Finian McGrath, I thank Deputy Browne for raising the issue of funding in relation to St. Aidan’s care services in Gorey, County Wexford.
The Government’s ongoing priority is the safeguarding of vulnerable people in the care of the health service. We are committed to providing services and supports for people with disabilities. Disability services are provided to enable each individual with a disability to achieve his or her full potential and maximise independence, including living as independently as possible.
Services are provided in a variety of community and residential settings in partnership with service users, their families and carers and a range of statutory, non-statutory, voluntary and community groups.
Services, in the main, are provided either directly by the HSE or through a range of voluntary service providers. Voluntary agencies provide the majority of services in partnership with and on behalf of the Health Service Executive. HSE disability services have been allocated €1.8 billion in 2018. This includes residential services for 9,000 people, day services for over 24,000 in addition to 182,500 respite overnights, 1.46 million hours of personal assistant services and 2.93 million hours of home support services.
This funding is providing disability services throughout the country across all community healthcare organisations, CHO, areas and is spent in line with nationally agreed policy for disability services while at the same time endeavouring to maximise value.
St. Aidan’s services in County Wexford provides a range of services for adults and children with intellectual disabilities which includes residential care, day services for adults with disabilities, preschool education for children with disabilities, day activation, rehabilitative training, a garden centre and respite services for children with high support needs.
St. Aidan’s receives funding under section 39 of the Health Act 2007 from the HSE and is scheduled to receive €5 million in 2018. St. Aidan’s has identified deficits to the HSE in its agency’s core funding and costs associated with HIQA compliance, and has indicated that this may affect the services it provides.
HIQA is the statutory independent regulator for residential services in the disability and older persons sectors. All residential services are inspected by HIQA and compliance with a number of quality and safety regulations is required for registration. Regulatory compliance is a requirement under the service level arrangements agreed between the HSE and voluntary service providers. Service providers are expected to meet any costs associated with HIQA compliance through their core HSE funding allocation. The Deputy should note that increases in funding can only be considered within the parameters and scope of funding available to the HSE. Local HSE disability services continue to have ongoing liaison and engagement with St. Aidan's regarding deficit issues arising in the context of resources available. The HSE will be producing the 2019 national service plan in accordance with the relevant legislative provisions and funding allocation and additional funding may be considered in this context.
I might have missed one of the issues the Deputy raised. He might come back to it.
I am not having a go at the Minister of State or the line Minister. However, this is becoming a habit in the House and this case illustrates why it is an issue. The staff here are being paid a day late this week. I have been told there will not be enough money to pay the staff in December. There are 300 service users. Everyone is under stress, including staff, service users and their families. The answer that has been typed out for the Minister of State to read does not answer any of my questions. It does not address the situation of ongoing issues between St. Aidan's and the HSE regarding funding for the past two and a half years. It does not say whether the Minister is going to engage with the situation with either St. Aidan's or the HSE. No solutions, proposals or ideas are set out to deal with this situation and we will go home today none the wiser. Most of the Minister of State's reply just tells us what we already know. What does the Minister say to the staff who are being paid late through no fault of St. Aidan's which does not have the funding? What is to be said to families and service users? Will there be any intervention? The HSE's CHO 5 states that it has no money to pay because it has run out of cash. The matter has gone up the line to senior HSE management, but that is not addressed in the reply. The HSE and the Department have been given fair warning about this situation, which has now reached a crisis point. If things fall apart in the coming weeks, the responsibility will lie at their doorstep.
I have little to add. I do not have any initial answers to the questions he asked. The matter raised centres on the provision of funding to avoid the closure of St. Aidan's care centre in Gorey and I do not know anything about why staff have not been paid.
The HSE and the Department are aware.
I assure the Deputy that I will bring his very relevant concerns to the Minister on my way back up and ask for a reply to be forwarded to him. I have taken notes and will ensure that happens. However, I do not have the specific answers in the reply or even in the other material I was given.
I thank the Minister of State.
Given the nature of the reply and the seriousness of the issue, the line Minister might meet Deputy Browne. It is a matter of some urgency.
I will relay his concerns when I go back up to the office.
It would be helpful in respect of finding a resolution to the matter.