Nithe i dtosach suíonna - Commencement Matters

School Accommodation Provision

I thank the Leas-Chathaoirleach for selecting this matter. I welcome the Minister of State, Deputy Kehoe. It is a pity that the Minister for Education and Skills, Deputy McHugh, could not be here. Naas community college is operated by Kildare and Wicklow Education and Training Board, KWETB. It has received planning permission on a site that has been selected for some years. My understanding of the current situation is that the tenders have been accepted and examined and it is hopeful that the builders will be on site in November.

The problem is the current situation with the school. The first class that started in the school has reach transition year, TY. It is more than likely that those TY students will not have an opportunity to ever enter the new school. The school is spread over three locations. One is Craddockstown, in temporary structures adjacent to a primary school, while the TY year is housed in what I would term condemned buildings, prefabs, at Pipers' Hill. I understand the Department has spent €60,000 refurbishing those buildings. The Minister of State with responsibility for Defence will certainly understand the importance of physical education, PE, in the life of a student and the reason for the third location used by the school. The local GAA club in Naas has very kindly provided facilities for the school. The three locations are not adjacent to each other; they are located at opposite ends of Naas.

There are 320 applicants for first year in Naas community college this year but the school will have space to accommodate just 120 pupils. There are no classrooms available for those pupils coming into the school in September. The cost to the school, which it raises from its own budget, is €24,000 for shuttle buses to move the students around to the various locations. That does not take into consideration the difficulties teachers also have in moving around those locations. I look forward to the response and update from the Minister of State. The builders will be on site sometime in November, but I am concerned with the current situation. The pupils in TY now will never have access to the new building. What are we going to do over the next year and a half of the building programme? There are no classrooms for the children coming into the school next September.

I thank the Senator for raising this important matter and providing me with the opportunity to update the House on the delivery of a new building for Naas community college. The school opened in September 2015 in temporary accommodation at Craddockstown Road, Naas. In the meantime, a project for a new building for the school, fit to house 1,000 pupils, was devolved for delivery to KWETB by the Department of Education and Skills through a service level agreement. I am pleased to inform this House that the architectural planning process for the delivery of this project is nearing completion. The design team completed the contractor pre-qualification process for the project in December 2018. Tender documents issued in May and tenders were returned in June. There was a robust tender competition, with all eight of the short-listed contractors bidding.

The outcome of that process is that a preferred contractor to complete the project has been identified. A letter of intent was issued last month in that regard. A number of steps need to be taken before a letter of acceptance can be issued to the preferred contractor. The design team is carrying out these steps, which will allow for the confirmation of the appointment of that contractor. These steps are expected to be completed very shortly, and the project is still on target to begin construction on site next month. It is expected, on this basis, that the school will be ready for occupation before September 2021.

While enrolment for the 2018-2019 school year was 379, this figure is up from 266 in 2017-2018 and 163 in the previous year. Increases in intake in the coming years are expected along similar lines. In that context, KWETB, supported by the Department of Education and Skills, is taking the necessary steps to ensure that the temporary accommodation arrangements being put in place for the school will be sufficient to meet its needs until the new school building is ready. Officials from the Department of Education and Skills recently met school representatives of KWETB in respect of that matter. Approval was given at that meeting for KWETB to proceed with a revised brief for the provision of this temporary accommodation. That is being progressed as a matter of priority.

It is most regrettable that this project has not yet been delivered as a result of a number of delays. For example, as the project is being delivered on a site in an area which is earmarked for wider development, it encountered significant delays during the planning permission process. Planning permission for the project was ultimately granted in April 2017. Following the granting of planning permission, changes to the stage 2b submission were necessary to include a number of changes to areas from planning conditions and the public works contracts to alterations to the Department of Education and Skills room layouts. An understanding of the impact of these changes was a requirement for the design team to carry out a significant level of work to redo drawings, layouts and schedules. The quantity surveyor also had to revisit all the measurements and quantities relating to the bill of quantities. There were other delays caused by issues with ESB International regarding the relocation of overhead power lines traversing the site, and a consequential delay in ensuring compliance with the requirements of the nearly zero energy building regulations.

I again thank the Minister of State for taking this matter on behalf of the Minister for Education and Skills. Perhaps he will pass on a couple of queries to the Minister. I welcome everything the Minister of State said. As stated earlier, I expect the school to be open before September 2021. I have identified the fact that the school is operating across three sites at present. That is key. PE classes will be very difficult because the site in Craddockstown is not large enough to cater for the PE needs of the school. I again thank Naas GAA for allowing its facilities to be used by the school. As for the possibility of all other subjects and classes being held on the one site, will the Department of Education and Skills approve sufficient funding to allow KWETB to procure or rent whatever classroom facilities it needs? My understanding at present - and it makes me nervous to say it - is that the Department of Education and Skills has decided not to grant KWETB the full number of classrooms required to take in the minimum number of 120 pupils for the year ahead and that we will still, next year and possibly the year after, have the problem that the school will be located across three sites. Can the Minister of State give me some detail as to how this procurement will be progressed and whether it will be in place in time for the start of the school year? I hope it will happen sooner rather than later.

I fully understand and appreciate the desire of the pupils, parents, staff and community of Naas to see their new school building completed as quickly as possible. I assure them that they can expect to see work on the new building over the coming weeks. I assure the House that KWETB, in close consultation with officials in the Department of Education and Skills, has done and is doing the utmost to progress this project as quickly as possible. In the meantime, it is progressing the additional temporary accommodation required to meet the school's needs until the new school building is ready. I look forward to seeing the community of Naas benefit from the provision of the community college over the next short number of years. By all means I will definitely take back to the Minister the concerns Senator Lawlor raised regarding funding, the three sites and the way in which procurement has been progressed. I will take those issues directly back to the Minister on behalf of the Senator and ask the Minister to liaise directly with the Senator on those specific issues.

Medicinal Products Availability

I thank the Minister of State for coming to the House. He will know that I had requested the Minister for Health, Deputy Harris, to do so, but I appreciate the Minister of State's presence. I hope the Minister has communicated with him on the issue of Spinraza. The Minister of State will know that we have been fighting for Spinraza to be made available for the past two years. We were absolutely thrilled when Spinraza was approved on 11 June. We accepted that four to six weeks, or however long necessary, would be required to do the paperwork in order to have the drug administered. Then, on 23 August, there was a sign-off on it. At that point, the parents of the children who need Spinraza were told that everything would be put in place and that they could expect the drug to be administered at the end of October.

The end of October is approaching and the parents have been given another update stating that, due to resource issues, together with bed shortages, the drug that has been approved and that is necessary cannot be administered. I look at these children, and their parents look at them, and they tell me that this is almost worse than the drug not being approved. This pertains to Mayo in particular because we have Grace O'Malley and her friends and Cillian Mearns, who have done work on this. We need to know when the drug will be administered. It was cruel in the first place for them to have to wait for so long for Spinraza to be approved, but there is an additional cruelty in knowing that it has been approved and is there. The drug has been purchased, and now the HSE tells us it does not have the resources to have it administered. We are not talking about a staffed bed for a long period. The Minister of State will know that Spinraza can be administered to day patients, so all we need is a bed for the day, or even half the day, to get the drug administered. That, we are told, is not available. Over the first two months the drug is administered four times and then the dosage decreases. We are talking about just 11 patients who are ready and suitable for this treatment. I hope the Minister of State can give me very specific answers today as to when these children, including Grace and Cillian, will get a specific date to start on Spinraza.

I thank the Senator for raising this very important issue and for giving me, on behalf of the Minister for Health, the opportunity to clarify the position on the availability of Spinraza for patients with spinal muscular atrophy. The Minister for Health appreciates the desire of families to see their children who suffer from this debilitating and painful condition begin treatment with this medicine.

As the Senator will be aware, the HSE has statutory responsibility for medicine pricing and reimbursement decisions under the Health (Pricing and Supply of Medical Goods) Act 2013. The Act specifies criteria for decisions on the reimbursement of medicines. The Minister for Health has no role in this statutory process.

On 11 June 2019, the HSE leadership team approved access to the drug Spinraza for children with spinal muscular atrophy, SMA, type I, II or III on an exceptional and individualised basis. The HSE decision process for Spinraza involved a full 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 HSE drugs group. Evidence of the clinical effectiveness of this new drug therapy was also reviewed. After a thorough review, it was decided to approve access for children with genetically confirmed SMA type I, II or III in accordance with the controlled access criteria recommended by the rare diseases technology review committee. The actual patient assessment and approval process is the means for determining access, on an individual case-by-case basis, to this complex treatment. The HSE has indicated that 11 children have been approved for Spinraza treatment in Temple Street Hospital since July. Application for approval is based on clearly defined criteria and clinical guidelines being followed in each case. All patients who have been recommended clinically have been approved to date.

All of the patients who have been approved for Spinraza treatment are being treated under special care, according to Children's Health Ireland, at Temple Street Hospital. Detailed clinical guidelines have been developed for this service, which includes specific patient criteria that must be fulfilled in order for the treatment to safely commence and continue. The actual delivery of this drug to approved patients in a safe and sustainable way requires specific and complex service arrangements to be put in place in Temple Street Hospital. Spinraza is injected during a procedure known as lumbar puncture. There are two categories of patient for the administration of Spinraza. Category 1 is where the administration of Spinraza is deemed not too technically difficult. In that case, the consultant paediatric neurologist and lead clinician need access to the day ward as administration is performed under local anaesthetic. Each of these patients will also require a physiotherapy assessment prior to administration and recovery time in the day ward. Category 2 cases are more complex patients who have already undergone spinal fusion surgery and insertion of spinal rods, which makes the administering of Spinraza potentially more complex. For these patients, the delivery of Spinraza will require specialist care to include input by an anaesthetist and an interventional radiologist with associated nursing, and the availability of capacity in the paediatric intensive care unit.

The Senator will appreciate, therefore, that a considerable amount of service planning and assessment of patients at an individual level is required for treatment with Spinraza to be safely undertaken. The Minister for Health has been advised by the HSE that Children's Health Ireland is engaging on an individual basis with the families involved regarding each child's treatment plan. He has asked to be updated further as soon as possible.

I do not take heart from the statement as it outlined what I already know. The issue is one of resources and the Minister for Health has not given a date for the administration of Spinraza. While the Minister does not have a role in the workings of the HSE, he has a role in ensuring that drugs that are approved are then administered. We need a date for these children notwithstanding the complexities the Minister of State outlined.

It is not true that all of the patients who have been approved for Spinraza treatment are being treated under special care because they are not. The Minister of State referred to spinal rods and what is already being done. I appreciate the complexity involved in those cases but children who have not had spinal rods inserted have not been given the treatment either. I ask that the Minister take up this matter and ring-fence resources available to Temple Street Hospital in order that these 11 children can get the drug. After all, it has been purchased and is available and the consultants are ready to do the work. They need the resources to do so. I ask for a date. I am not going to let this matter go. Grace is just ten years old and I will not repeat what she is asking but we owe her answers.

The Senator feels very strongly about this matter. The Minister for Health fully recognises that this condition places enormous strain on SMA sufferers and their families and carers and that this is a very worrying time for them.

The complexity of this treatment requires appropriate service arrangements to be put in place in Temple Street Hospital so as to ensure that the treatment and delivery of this medicine are conducted in a safe and sustainable manner appropriate to the standard of care which has been developed for this particular treatment. While the Minister hopes that access to this treatment will be provided shortly for all concerned, it should be remembered that the care of individual patients is a matter for treating clinicians in line with patient safety, protocols and guidelines. These are being developed by the HSE to administer Spinraza. As I said, the Minister hopes to receive a further update on this issue as soon as possible.

This is a clearly a major issue for the Senator and I know she is personally involved and has a personal connection. I do not have answers to hand because I do not have responsibility for this area. However, I will ask the Minister or one of his officials to communicate with her directly and address the specific concerns she raised. I admire the Senator for the manner in which she has raised this issue on behalf of patients who are awaiting treatment with Spinraza.

Sitting suspended at 11 a.m. and resumed at 11.30 a.m.