Dáil Éireann debate -
Thursday, 14 Jun 2018

Vol. 970 No. 3

Topical Issue Debate

Asylum Applications

Deputy Barry Cowen

Two minutes is very little time within which to convey to the public the situation surrounding the application by the Muojeke family. The Minister is well aware of the case, based on my own representations and those of my constituency colleagues, Deputies Corcoran Kennedy and Nolan. He is aware that the initial application for refuge or asylum by Ms Muojeke was made in 2006 and 2007, for herself and her two children, Nonso and Victor. Following a refusal in 2009 based on legal advice, in 2016 the applicant made an application to the courts to revoke that appeal, which was dismissed by the High Court in recent weeks.

Despite the merits or otherwise of the application, I wish to inform the Minister that the children of Ms Muojeke have excelled, thankfully, in the meantime, against all the odds. They have flourished in their schools, in their community and in our country. The petition handed to the Minister today and which was made available to other Members of the Dáil shows that over 20,000 people support this family's case, and support the contention that they are excelling. Victor, the older boy, is now on a scholarship at the University of Limerick. Nonso is at Tullamore College and is an integral part of that community and that education system. They are as Irish, I believe, as the Minister or myself. They have not been a financial burden on the State, and will not be going forward.

When one re-enters the country after having been abroad, as we all have done, it is gratifying to hear an official from the Department of Justice and Equality welcome us home. There is a great sense of pride in that, and a sense of comfort in that welcome, and an association with community attached to that. These children will never witness that if the Minister does not show the leniency it is within his power to show in this case. The Minister saw the petrified looks on the faces of these children and their mother when he met them briefly today. They believe themselves to be in a perilous situation, despite the effort and good will of everyone concerned, including school staff and students and the wider community in Tullamore.

The Minister for Health, Deputy Harris, acknowledged the new compassion that exists in this country - which thankfully has no boundaries - in response to the recent referendum. He said that those women who had previously taken the boat and the plane would now be offered the hand of the State. The Minister for Justice and Equality now has an opportunity, between the application to the High Court and any subsequent application to the Supreme Court, to show compassion, based on humanitarian grounds. Irrespective of the negligence or otherwise of the State in dealing with the case over a period of time, the State must recognise the capacity for these children to excel and acknowledge the sense of welcome that these children experienced and which should not be forgotten.

I implore the Minister, in the short amount of time I have, to use the discretion available to him in this exceptional case. I am not disregarding the processes or the legislation associated with applications for refuge or asylum. As a Member of the Legislature I stand over those processes. However, one has to recognise and acknowledge that Nonso, quite apart from Victor, his brother, has been here since he was two years old. He has appreciated everything that has been afforded to him in this country. I ask the Minister, on compassionate and humanitarian grounds, to look favourably on this matter and to use the power that is available to him by virtue of his position, to grant leave for these people to remain in this State and to let them get on with their lives.

Minister for Justice and Equality (Deputy Charles Flanagan)

As Deputy Cowen knows I am most familiar with this case. Indeed, I met Nonso Muojeke today in my office. Of course, I am immensely sympathetic to his situation and I understand why there is concern among his friends. However, it is important to state that there is a huge volume of misinformation in the public domain about this case, and this is a concern to me. As the House knows, as Minister for Justice and Equality it is not my practice to either comment publicly on individual cases or to interfere in a case that is still before the courts. I have been informed that the legal team of the appellant has lodged papers yesterday seeking leave to appeal to the Supreme Court, so this case remains sub judice and, accordingly, I am particularly constrained in what I can say.

Last year alone there were over 2,290 individual applications made for international protection by asylum seekers. Each of these cases is processed by the Irish Naturalisation and Immigration Service, INIS, in accordance with the law. In going about its work, INIS is acting in the name of the Minister for Justice and Equality, but from a practical point of view I do not intervene in the processing of cases which are governed by clear laws and procedures and subject at all times to the supervision of the courts. From time to time a case will come to me directly for consideration, and I have given an undertaking that when this particular case has concluded in the courts I will give the application full consideration on humanitarian grounds. I pledge to do that. More generally, while control of our borders and the operation of an effective immigration system are important duties of State, Ireland has always been recognised as an open and welcoming society which operates an open regime with many pathways for non-EEA nationals to enter and remain in the State lawfully. This duty is at all times subject to the law, including our international human rights obligations.

As I have already mentioned, INIS manages Ireland’s immigration law on a daily basis. This is a huge undertaking. In 2017, there were over 250,000 applications in areas ranging from visa applications to citizenship applications to permissions to reside in the State. When a person comes to Ireland seeking international protection status he or she enters a legal process, during which all aspects of the applicant’s case, including full consideration of his or her rights to a private and a family life under Article 8 of the European Convention on Human Rights, are considered in some detail. A decision is made and the applicant is either granted international protection status, granted a formal permission to remain in Ireland or is told that he or she does not qualify for either status and must therefore leave the State.

In circumstances where a person’s case is refused and he or she does not avail of the option to voluntarily return to his or her country of origin, a deportation order will be made. That person will be given time to get his or her affairs in order before removal from the State. The Deputies should note that the decision to make a deportation order are not made lightly. In fact, far from it. The process is exhaustive, with various avenues of appeal open to those who get a negative outcome at first instance. These decisions of the Department are subject to appeal, including judicial review in the superior courts. INIS processes hundreds of thousands of cases each year. I do not personally see these cases, and with the volume concerned nor could I be expected to. This case was treated in the same manner as other such cases.

Immigration officials often have the difficult task of balancing the individual rights of persons with the wider obligation to maintain the integrity of the State’s immigration system, taking all factors and the circumstances of each case into account.

Some decisions are appealed to the courts and at that stage become sub judice. This is the situation that has pertained in this case, so I have to comment that the matter is before the courts. Once this case has concluded before the courts, however, I will give due consideration to the circumstances of the case, including any humanitarian considerations. Under international law, Ireland is obliged to operate an international protection mechanism under which those who come to our shores seeking international protection can have their claims fully considered. I am satisfied that the mechanisms in place under the International Protection Act 2015 provide for a fair and comprehensive examination of each claim made before a decision is taken to grant or refuse international protection, or to grant or refuse permission to remain.

Deputy Barry Cowen

I thank the Minister for his response and I note what he has said. He started by saying that while he was sympathetic towards the case, he was concerned that certain aspects of it are not in the public domain. That is worrying. I realise the duty of Deputy Flanagan, as Minister with responsibility for these issues, and of the State to act in accordance with various human rights norms. I recognise that the Minister and the Department have a duty to implement the laws concerning such applications that exist in this land. Of course I do.

There is also a duty on the State, and on the arms of the State that have charge of that responsibility to follow their processes. In 2009, they did not. It was not until 2016 that this applicant sought to revoke the deportation order. I am puzzled to hear that an application has been made to the Supreme Court. I am not aware of that, and I spoke to the legal representatives earlier today. That notwithstanding, it has not been granted. The Minister has an opportunity to intervene at this stage if he so wishes. I take him at his word when he says that he will not intervene now but he will do so when the Supreme Court has had its say, irrespective of what the verdict might be, but especially if it is a negative one.

In the meantime, during that process, irrespective of who was at fault, which somebody may well have been, these children were enrolled in State schools and were afforded an education. They were afforded a welcome by the staff and pupils and by the communities they resided in, so much so that 20,000 people saw fit to sign a petition to implore the Minister to use the powers available to him. I would not make a habit of this, nor would I expect anybody else within the Chamber to do so. There are times, however, when one has to stand up. There are times when one has to recognise that this modern country, and the modern generation of which these children are members, do not see the barriers that existed in Ireland in years past. The recent referendum showed us that the prejudices that existed in other generations thankfully do not exist in the present and upcoming generations.

If the Minister has made a decision not to intervene at this stage, which is his right, based on information that an application has been made to the Supreme Court and has been accepted - information that was not available to me when I spoke to the applicant's legal counsel earlier today - perhaps he will agree to intervene on the conclusion of that process, when he believes he has a right to do so. I accept, acknowledge and appreciate that. I would have hoped, however, that it could have been done earlier. I hear what the Minister has said. We will hold him to his word, and I expect those who signed that petition, everybody associated with this and those watching will do the same. Without a doubt, we acknowledge the duty of the Minister, the State and the Government to uphold the law of the land. If the Minister upholds the law of the land, however, he must ensure that the armoury available to it is acted upon. If it were acted upon in this case, maybe we would not be here today.

Deputy Charles Flanagan

I repeat my concern that there has been a great deal of misinformation about this case in the public domain. I want to state clearly that Nonso Muojeke is not at any immediate risk of deportation. The Irish Nationalisation and Immigration Service has given that undertaking to the court. This case is still before the courts. As I have consistently said, as Minister for Justice and Equality I do not interfere with cases that are before the courts. When the court proceedings conclude, however, I will use my powers as Minister to consider this case fully, including from a humanitarian point of view. As Minister, I do exercise ministerial discretion from time to time. Having a functioning and transparent system is a critical component of immigration systems, not only here in Ireland but right across the world.

I remind Deputies that 2,926 individual applications for international protection made were made last year alone. Applicants for international protection from the UN-recognised refugee-producing countries are prioritised. Each applicant is required to comply with the laws of the country during the time their application is being processed. Ireland has reformed its immigration system to address lengthy time periods associated with applications. With the commencement of the 2015 Act on 31 December 2016, we now have a single procedure. This is the biggest reform of our protection process in more than 20 years. It is in line with our intention to provide first-instance decisions in the shortest possible timeframe.

I do not doubt the sincerity of Deputy Cowen. I hope that is mutual. I regret that I cannot comment on individual cases that are before the courts because they are undergoing due process. I assure Deputy Cowen and the House, however, that once the court proceedings have concluded, I can give the facts and the circumstances of the case in question full consideration, which I intend to do.

Cancer Screening Programmes

Deputy Alan Kelly

As the Minister for Health is aware, we have been around the houses on this today, in the Committee of Public Accounts and on Leaders' Questions. The hearing of the Committee of Public Accounts was extraordinary for the lack of information that the acting chief executive of the HSE has on this issue. He has met Dr. Scally only once. Also, the programme manager of CervicalCheck has never met him or spoken to him. While what Dr. Scally has said about the provision of information is accurate, the head of the programme offered him a facility through the HSE for direct electronic access to all the information he required. The head of the HSE did not know that today until I pointed it out to him, even though he was sitting beside him. He complimented him on putting it forward, even though I had to go through the management system.

My issue is that I sat down with the Minister and negotiated in good faith on several occasions. Through its spokespeople, the Dáil decided to go forward with this scoping inquiry, which I now regret because I think we should have voted on it. My concern is that this scoping inquiry has drifted into becoming something different. The Dáil also decided the timeline. The date of completion was the end of June. Now the Government has decided to push that back to the end of August. I want a guarantee from the Minister that this will not drift beyond the end of August, and that he will call back the Dáil so we can set up the commission of investigation. The latter point is not for debate, despite Dr. Scally saying numerous times in interviews that he would decide whether one was needed.

Will the Minister give this House a guarantee that this will happen? I am concerned that this will continue to creep. I do knot know if Dr. Scally will be able to complete the work, as he feels it is constituted, by the end of August. I understood that he was to have quick facts, that he would ascertain the key requirements for the terms of reference, and that then we would set up the commission of investigation. That was his role as I understood it. I commend him as a person. His CV is excellent. However, this has gone way too far.

I do not believe we will get the quick information we require for the families of the women who have died and for all of the women who are in very difficult health situations currently who need answers quickly. If the Government, as opposed to the Dáil, has decided that this will go to August I want it absolutely guaranteed that it will be concluded by August, because the commission of investigation cannot commence until the Dáil is sitting. The Minister will have to bring back the Dáil on 1 September, or a date close to it, for the investigation to commence. This is not what was agreed. I am willing to give its completion the benefit of the doubt, if that is what the Minister advocates, however, that date must be locked down. I want all ten terms of reference fully completed by that date. I also want to see a complete change in attitude from the HSE on information provision and how Dr. Scally gets access to people and information for this. The Minister has a role to play in this. I request specifically that the Minister actually meets the people in CervicalCheck in Limerick. They have asked me to ask him to do so to get a full picture of what is going on.

Minister for Health (Deputy Simon Harris)

I accept Deputy Kelly's invitation to visit CervicalCheck in Limerick. We are entering a frantic number of weeks with regard to legislation, but at the earliest possible opportunity I will visit there. It would be extremely beneficial. I also want to thank the people who have been working on the front line. I believe they have been working extraordinary hours in recent weeks and months to try to get on top of this. I heard Deputy Kelly acknowledge this earlier at the Committee of Public Accounts meeting.

I thank Deputy Kelly for raising this issue and giving me an opportunity to update the House and answer some of the questions he put to me directly. For the record of the House, on Tuesday I published two interim reports prepared by Dr. Scally outlining the work he has carried out so far as part of his scoping inquiry to date. One report is a progress update and the other is a first report addressing point D of the terms of reference on information for women about screening. This is a very important area of work. There are nine other areas, but I know we agree rebuilding confidence in the screening programme is very important with regard to what women are told when they go to the screening programme about consent and open disclosure.

I welcome Dr. Scally's recommendations, as I know the Irish Cancer Society does. I have heard a number of women and next of kin who have been impacted by the audits welcome it also. I have accepted all six recommendations in full. I also welcome his approach to the work. I welcome the fact Dr. Scally seems absolutely to have the confidence not just of people in this House but of the families with whom he is interacting. I have heard some very positive feedback from them and from some patient advocacy groups in terms of how he is going about his work. I thank Deputy Kelly for acknowledging this.

Deputy Kelly is right that Dr. Scally has requested he be allowed to continue his work until the end of the summer. He said to me quite honestly that he could, in theory, rush his report but he did not believe it would do justice to the issue and that he would like to work his way through the summer months. This reflects the need to engage with more women and families affected and also to go through the sheer volume of documentation that he has received. Importantly, he has not said by any manner or means that he is off until the end of the summer, good night and good luck. He has said he will continue to provide discrete reports as they are completed so we can get on with implementing some of the practical changes. I would like to see something on governance, on which he is working within the terms of reference, and something on the laboratories and the review of contracts. I welcome the fact that today the HSE confirmed he will get access to those contracts very quickly. This is vital.

I want to be crystal clear on the record of the House that there is no ambiguity about this. There will be a commission of inquiry. There will be a statutory inquiry. I am committed to establishing one. I brought a memo to the Government to establish one. Let us be honest, I have to acknowledge that when I first came into the House it was my original intention to set up a HIQA inquiry. Deputy Kelly pointed out the limitations of this and advocated very strongly. We worked on a cross-party basis. There will be a commission of inquiry. I believe, as do most people in the House, that there is value in Dr. Scally answering as many of those terms of references as he possibly can over the summer period so we do not have to put a huge body of work into a commission that could go on for far too long.

I want to stress that Dr. Scally is very committed to the work. It is important we give him the time he has requested to complete his inquiry in a comprehensive manner. He has asked that that be until the end of the summer. It should be acknowledged that Dr. Scally was only requested to provide an update on progress at this stage but he went further than that in providing one other report. One of the recommendations made was on an ex gratia payment, which obviously we accepted in full. I want to say on the record, in case of any confusion, this is not instead of compensation, redress or support packages. It is an additional support and its sole purpose is to ensure there are no financial obstacles to any woman or her family participating fully in the inquiry.

Deputy Kelly knows that the recalling of the Dáil and when the Dáil sits is not a matter for me, but if Deputy Kelly is asking me whether I want to see the commission of inquiry established in September and whether I want to work with Members of the House to make it happen the answer is that I do. I will work and engage, as I believe I have shown to date I would like to do, with the Opposition on what exactly we should put into the commission of investigation.

Deputy Alan Kelly

I respect Dr. Scally. I respect the manner in which the Minister has engaged with me on this issue. I thank him for the changes he has taken on board from my suggestions throughout this. However, my issue here is very clear. I am afraid of creep, and to date this has crept enormously. Dr. Scally's comments in the media really worried me, when he thought there may not be need for a commission of investigation. His scoping is very tight. There are ten terms of reference but they are only to find the basic facts.

One of the things I believe he has to do is get the cytology results of the 209 women by laboratory, by date, by grade, by cytologist and graph them and show where the issues are and, basically, put it out there so we can see where the problems are. We do not have time to document all of these poor women's stories. They do not have the time. Remember, these are the same laboratories with the same shiny accreditation using the same staff and quality assurance and under the same tenders that are carrying out the smears now as in the 209 cases, which number, we heard today, will increase.

My real issue is that as long as this creep and this drift towards a longer period continues we will not get to the bottom of how these women ended up in the situation in the first place. We need to get there quickly and then we need an investigation as to what happened. We need to make decisions based on Dr. Scally's scoping exercise. The Minister has to ensure it is completed by August because I will come back in here, and the Minister knows I will, if this is not concluded by August. If I find out at the end of August this has not concluded I will know we are not doing the best for these women.

Will the Minister please go to Limerick and ask Dr. Scally to engage with the people in Limerick and meet the programme manager, who has never spoken to him, which is extraordinary? Will the Minister please get to the bottom of the issue that Dr. Scally has identified with regard to information provision? By all accounts, at the very beginning the programme manager offered him full direct electronic access, so who in the HSE blocked it and why? We must remember the chief executive is on record as saying he did not have a clue this happened.

Deputy Simon Harris

I will indeed go to Limerick and talk to the CervicalCheck team, and I will thank them for the work they are doing. I just read in the news headlines as I came down the good news that Vicky Phelan received today, which I welcome and I am sure Deputy Kelly does also.

Deputy Alan Kelly

Absolutely, 100%. It is great news. It is fabulous news.

Deputy Simon Harris

It is appropriate that Deputy Kelly and I acknowledge this, along with everyone in the House, because we would not be here if it were not for the work she did.

Deputy Kelly's concerned about time creep is genuine, and it is a good way of putting the idea that this could slip on and on. We need to get the answer. The idea of the scoping inquiry is to get the answer. I am very satisfied that Dr. Gabriel Scally will get a lot of good answers. This is a man who, as Deputy Kelly rightly acknowledged, has a very impressive CV and track record. He calls it as he sees it and we saw that this week. He does not take any messing around from anyone.

With regard to the issue of documents and information, I could not have been clearer with him and, in fairness, he said this publicly. I took the opportunity to phone him again yesterday to tell him if he encountered any blockage from anyone in getting any information or any records to tell me directly. He said he appreciated that and he would be back to me if it arose. I have legal powers to request documentation from the HSE and make it available to others. I do not believe I will need to use them because everyone has said they will co-operate, but I will stop at nothing to make sure he gets the information that he requires.

I also want to pick up the point Deputy Kelly made, quite rightly, and it was raised at the meeting of the Committee of Public Accounts today, on the number of cases being likely to increase. It is important that as audits are carried out and completed they are disclosed to women. Had that happened in the first place we would not have the awful mess in which women have found themselves, where information about their own health care was concealed.

Auditing is good but not disclosing audit results is the problem. I expect, as the audits are completed, that the women will be first to be notified. It will not be this House or the media but rather the women who will be informed about their medical records. Dr. Scally will be kept informed in this regard.

I am absolutely committed to setting up a commission of inquiry in September and working with the Opposition to ensure that is as effective as possible. I thank Dr. Scally for his superb work and I look forward to more of his recommendations.

Rare Diseases

Deputy Timmy Dooley

I raise the issue of a lack of a designated expert in the Health Service Executive, HSE, for those individuals who suffer from Ehlers-Danlos syndromes, EDS. The Minister is aware that this is a group of syndromes relating to connective tissue disorders. The way in which they affect patients varies greatly. For some, the condition can have a profound impact on the quality of life. It has an impact not just on health but in many cases on an individual's mobility. That can range from relatively normal to very severe.

I will raise two cases in Clare with which I am very familiar. The first is Aoife Sage and the other is Zara Cronin. Aoife was diagnosed aged nine and her condition since has deteriorated rapidly from initially having some weakness or fatigue, with episodes of fainting and dizziness, to what is now joint pain and the requirement for a wheelchair. She is now 14. She suffers from instability in the neck and with certain movements her neck becomes dislocated. One can imagine the impact this has had on Aoife, who is unable to attend school. Her condition now is such that home schooling is not even an option for her.

There is no care available for her in the Republic. She has visited London for certain scans and there is some assistance in that regard. However, her condition, bad and all as it is, can be improved, along with her quality of life and mobility, if she can access surgical intervention that fuses parts of the head and spine. I am no medical expert in that regard but I understand her parents have consulted with a private clinic in Barcelona. I am aware that in the case of Zara Cronin the same solution could apply. I am also aware of a number of other cases throughout the country. They are relatively small in number but we understand there could be a significant benefit for those sufferers if they could access the surgery.

The difficulty is the State is not in a position or has not been in a position to provide funding as the available care is not in the public service anywhere in Europe. It is, however, provided for in this clinic in Barcelona. It is pretty clear from what I have seen and read that this intervention would have a very significant impact on the lives of the two girls with whom I am familiar. It is incumbent on us in this House and in the Department not to stand back from intervention because it is exploratory or at an early stage when there are recognised positive benefits for others. I appeal to the Minister to look at the cases again. I know there has been some communication between the Department and these families and others with a view to providing funding at this stage to ensure these children can be treated in the private facility in Barcelona. We can then develop our skill sets so we can try to be in a position to treat other individuals who will present at a later stage. I accept it is not possible to put in place that clinical care and intervention overnight here but it is available elsewhere.

I met the parents of these girls and Aoife's have had to do a crowdfunding exercise. I attended an event in Shannon the other night where the families and friends from the area around Sixmilebridge, Shannon and Newmarket came together in desperation to try to put funds together to help this family. The people on the ground get it and understand the positive impact that this family could experience. Anybody I have spoken with who knows the family, in some cases better and for longer than me, knows this is genuine and this will make a difference if the surgery is successful. It cannot be done without money.

I know we have come through a difficult time in the country but in this day and age should we be seeing a family effectively begging from their neighbours to collect money in order to have a medical service provided to their beautiful daughter? It says much about how we as a society react to children in dire circumstances. In fairness, the Minister while in the Department has demonstrated a great capacity to address serious matters as they arise. I hope he can do the same here and deliver some good news. I hope he will be in a position to meet the parents of these two children who might act as a representative of others suffering the same condition.

Deputy Simon Harris

I thank Deputy Dooley for raising this important matter. He is entirely right when he says people on the ground get it and we need to do better. It is a fair summary. I have been familiarising myself with the condition in recent months and as the Deputy correctly states, I have heard from a number of families doing the very best for their children. I would be happy to facilitate a meeting with the Deputy and some of these parents to discuss the matter in the coming weeks. We can set that up shortly.

I thank the Deputy for providing an opportunity to outline where we are and what we can do to ensure we better serve these children in future. EDS is classified as a rare disease, which is defined in the European Union, EU, as a disease or disorder affecting fewer than five in 10,000 of the European population. Although each disease is individually rare, there are a great many rare diseases. Collectively, rare diseases affect a large number of people and are significant contributors to a number of population health outcomes in terms of their high mortality, morbidity and disability.

Ireland published a national plan for rare diseases in July 2014. On foot of the plan a national clinical programme for rare diseases and a rare disease office has been established. In 2017, the Department published a progress report and update on all 48 recommendations of the rare disease plan. This interim report represents a detailed review of the implementation of the national plan.

EDS is not one condition, as the Deputy knows, but a group of several clinically distinct conditions. It has a relatively high prevalence of one in 5,000. It affects the connective tissues and most commonly can cause joint hypermobility. Once diagnosed, joint hypermobility syndrome can be treated with a mixture of exercise and physiotherapy. An exercise programme to improve fitness and muscle strength may also be effective at reducing pain. The nature of joint hypermobility syndrome means that patients are at increased risk of injuries such as dislocations and soft tissue injuries. Managing joint hypermobility may, therefore, involve treating short-term injuries as they arise while following a long-term treatment plan. The more severe forms of EDS, as the Deputy referred to, require specialist treatment often by multiple specialists but usually under the care of the specialist for the most severely affected organ system. These specialists can be paediatric cardiologists, rheumatologists, neurologists and orthopaedic surgeons. Where surgery is required, it is provided for in the context of surgical and orthopaedic services for patients with EDS.

The most severe cases of EDS are rare and are usually managed by specialists at Our Lady's Children's Hospital, Crumlin. I am advised by the HSE that the total number of patients with severe EDS nationally is between 20 and 40 patients. In late 2017, the HSE national clinical programme for rheumatology completed a significant piece of work relating to a model of care for rheumatic and musculoskeletal disorders. I am pleased to inform the Deputy that this is at the final stages of approval by our health service. This model aims to ensure that the patient is seen, assessed and treated by the right person in the right place and in the timeliest manner. With the implementation of this model of care, the programme will develop disease-specific pathways for disease groups, including EDS as part of hypermobility diseases. There is a new plan coming down the tracks that will include patients with EDS.

I thank the Deputy for his helpful comments and suggestions. EDS is, without doubt, a significant condition causing very distressing symptoms and may often require a range of specialist multidisciplinary treatments. We need to do better by these children. For those patients most severely affected where surgery is required, surgical treatment, especially in children, forms part of the current management of symptoms.

I especially welcome the ongoing work of the national clinical programme for rheumatology and its new model of care for patients, which includes EDS as part of hypermobility diseases. This can bring us to higher terrain in how we care for patients in this country.

Deputy Timmy Dooley

I welcome the Minister's commitment at least to meet the parents of the two children in question. I will be in contact with his office and we will try to arrange such a meeting in the next week or so. What is clear from the Minister's answer is that the HSE is still of the belief that it has an appropriate plan and model of care to deal with these complex cases. My interaction with the families indicates that is not the case, and I hope this will be brought home to the Minister when he meets the parents. While some of it is exploratory, good work is being done in Barcelona on cranial fusion and fusion within the spine. The Minister should see some examples of this work. The HSE will obviously want to manage this disease in Ireland, but we must be prepared to look elsewhere, as we do with the management of other diseases for which we access care in other countries when specialist training is not available here.

The families are familiar with what can be done and want to stand by their daughters and give them every chance. The State has a duty and an obligation to assist them in this regard. For this reason, rather than getting into a set piece here, I would like to engage with the Minister and his Department to try to find some way of assisting the families. It is not fair, given everything they must do for their children, that these parents should spend valuable time trying to fundraise from a community that is nonetheless prepared to help. Up to €100,000 would be required to cover the various costs associated with a family relocating to Spain for a period. For a community such as County Clare to fundraise for two families is too great a burden. It is incumbent on us to resolve the matter here and to do so, if necessary, by way of a pilot project or programme in order that we will learn and benefit from it and that other children who present in future will have the benefit of the learning these families will, I hope, be in a position to provide.

Deputy Simon Harris

I assure Deputy Dooley that my answer was not meant in any way to suggest that everything is absolutely appropriate and adequate in this regard. We need to do better, which is the reason I very much welcome the new clinical programme being worked on, of which EDS is a part. I believe the programme will be welcomed by patients with EDS and their families. However, the Deputy is entirely correct that the voices of patients and their families are extremely important as we develop these plans. I would very much welcome the opportunity to meet Deputy Dooley and the families to whom he refers in the coming weeks in order that we can ensure they make an input and to see if the State can do more to support them.

Bus Services

Deputy Noel Rock

I thank the Minister for coming into the Chamber to discuss this most important issue. The National Transport Authority's announcement on Tuesday of plans for new bus corridors in Dublin has caused confusion, unease and distress for many of the people living along the 16 affected routes. Approximately 20,000 households live along these 16 routes and it is planned to procure 1,300 portions of property by means of compulsory purchase order. As the Minister is well aware, traffic is beginning to clog up the arteries of Dublin in a way that is not sustainable and can no longer be ignored. Naturally therefore, any plan to alleviate congestion and improve the public transport offering is to be welcomed wholeheartedly. The Minister has overseen a great many public transport developments in his tenure, including the plan to electrify the DART network, the opening of Luas cross city and plans to deliver MetroLink and upgrade the Luas green line. Many capital spending plans for transport have been advanced on his watch and these will leave a tremendous legacy in the decades ahead in public transport, public investment and preventing further deterioration in traffic in Dublin.

That said, the NTA's communication to the affected residents leaves much to be desired at this early stage in this sensitive process. As I said, some 20,000 households live along these 16 routes. We have been told specifically by the NTA that 1,300 households will have a portion of their property compulsorily purchased from them. If the number involved is so specific, it raises the question as to whether the NTA knows exactly which properties will be affected. I suspect it does, which raises follow-on question as to why on earth the people who will be affected were not informed, consulted, written to and treated with basic respect, not only as stakeholders in this project, but also as citizens of this country. They deserve that at the very least. It is a regrettable misstep by the National Transport Authority to announce a plan at this halfway point. The NTA will make further announcements in September concerning the affected services within the existing bus network. I am not entirely sure why it could not have liaised with the affected residents and held off on these route announcements until then. That would seem a sensible course of action.

It is clear that this is not a problem of the Minister's or Department's creation. However, I would appreciate it, and I know residents in my constituency and elsewhere, particularly those affected in Rathfarnham who have been in touch with me and Deputy Colm Brophy in droves, would be very grateful if the Minister used his considerable influence to impress upon the NTA the need to learn lessons from this and to communicate better and more thoughtfully and inclusively with residents and stakeholders in future. I would appreciate the Minister's thoughts on this matter.

Minister for Transport, Tourism and Sport (Deputy Shane Ross)

I thank Deputy Rock for raising this extremely topical issue. It is unusual to get a Topical Issue matter under this heading, so I am very grateful to get one today.

The Deputy represents very well the apprehension which obviously exists among a large number of his constituents and others that they will somehow be hit by this very dramatic, transformational and radical attack on congestion in Dublin city. I have spoken to the National Transport Authority about this matter, including its communications, and I am satisfied with its explanations, while still understanding the Deputy's view. The NTA has indicated that the launch this week related only to what it describes as indicative routes. Obviously, nothing is set in stone when one launches 16 indicative routes and changes may still be made. Identifying 1,300 houses that will be affected could be dishonest and alarmist and some of the households identified may not ultimately be affected. The NTA has, I believe, identified an approximate number as honestly as it possibly can, while leaving room for discussion on the routes. The final decision on which households will be affected will be taken soon. From my discussions with the authority, it appears that decision will be taken in October or about three months from now.

What is more, the NTA is absolutely adamant that it will speak individually to every one of the affected households. It gave me that assurance this morning. Some people may look forward to a small section of their land being taken off them if the astronomical amounts appearing in the media are correct.

The problem with issuing square footage valuations is that each square foot has a different valuation. Some places in south Dublin have incredibly high valuations, while others elsewhere are very low. That is also the case in north Dublin. Therefore, one could not have an average estimate by square foot.

I suspect we will see very laborious but very democratic dialogue. They will engage with each individual household on a market valuation and, inevitably, some cases will go to arbitration. The State has a mechanism for doing so. I hope it will be a dialogue that satisfies the Deputy and others who are rightly concerned and will remove the apprehension some people will have when the routes are identified in the future. That will mean that this extraordinary bold step to relieve congestion will be successful.

I acknowledge that the Deputy is correct in that some people will be discomfited. That is to be regretted, but the big picture is that while we will not remove congestion forever, we will make dramatic inroads in easing it in this city. The number cycling will increase and the time it takes people to get to work will, on average, be halved. That is a serious goal we intend to achieve. I am sorry that some people will be inconvenienced, but there will be real dialogue and they will be generously compensated.

Deputy Noel Rock

I thank the Minister who I appreciate has had negotiations with the NTA on this matter. It is clear that he is on top of the issue which he is approaching with sufficient gravity and seriousness. It is interesting that the NTA uses the phrase "indicative routes" for the mid-way plan it announced on Tuesday. It also used the phrase in describing the recent metro plans, except that in that case, while there was great dissatisfaction at the length of time the affected stakeholders - owners of properties along the route - had been given, they were told about the indicative plans. If owners of properties along the metro route were informed of indicative plans, surely it is inconsistent that those who potentially will be affected on the Bus Connects routes are not. Of course, the Minister is correct that, by their nature, indicative plans can be changed, particularly when 16 routes are being planned in parallel and I acknowledge that it is entirely possible that many, perhaps even all, of the routes will change somewhat as the public consultation process gathers steam. However, I believe one critical component, regrettably, has been overlooked in the NTA's communication. Significant numbers of people have been upset. The No. 44 bus links the Minister's home area of Enniskerry with mine. I wonder if I were to hop on the No. 44 bus to Enniskerry tomorrow morning to knock on 100 doors and tell 100 people that roughly 5% of them would lose their gardens, would they be concerned, upset, distressed and alarmed. That is effectively what has happened. There are 20,000 properties along the 16 routes and we were told a specific number of owners, 1,300, or between 5% and 7%. would lose a portion of their property. The question is outstanding and one we will have to put to the NTA when its representatives are before the transport committee next week. Nevertheless, I appreciate the level of engagement and the fact that the Minister has pointed out that it is a radical plan, which it is. Dublin needs such a radical plan to deal with public transport issues. I have full confidence that the Minister is aware of how cohesive that plan needs to be and hope that in coming years we will manage to deliver on it.

Deputy Shane Ross

Everything the Deputy has said is authentic and genuine and we should take what he is saying to heart. The consultation process will be extremely extensive and I think the dialogue will be successful, but that does not meant that there will not be court cases. There always are and there will be some, but I do not think we should lose sight of the big picture which is halving the time it takes people to get to work. In fact, they will be more than halved because if we continue on our current course, travelling times and traffic congestion will continue to increase. Instead, we will have a speedy, reliable bus service which will move at a pace we have not seen before. People will get to work and arrive home earlier and buses will be able to keep to timetables, something they could not do before. It is also part of climate change policy and the programme for the removal of carbon emissions which we have been pursuing with increasing vigour and on which we need to play catch-up. Having 200 km of dedicated, segregated cycling lanes beside the new bus lanes is quite new and something we should all welcome. We will also have pedestrian lanes beside them which will encourage people to walk to work. It is all part of a big picture. The Deputy is talking about something that is important to the individuals concerned. If, in the future, he wishes to bring people to meet me to discuss the issue, I will be happy to transfer their views to the NTA rather than interfere directly. I am conscious, as I have been about the difficulties at the airport, that some people are concerned and that there are those whose lifestyles will be changed. It is a consideration we must take into account.