Maire Devine (Sinn Fein)
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In February, the House passed, unopposed, a motion which stated clearly that a non-HSE parent representative should be on the HSE primary care national steering group for children with complex medical needs. The parents of these children, who, through their experience, are experts, rightly rejoiced after the motion was passed. They believed that, finally, they would be listened to and respected, particularly in the context of their experience, their voice and their input. This has not happened to date. On 16 February, members of Our Children's Voice, the warriors who have been at the forefront of this fight since the very beginning, met the representative from the HSE and were assured that he was very happy for parent representatives to be on the steering group and that he would be in touch with an invitation. There was silence thereafter until just two weeks ago. At that point, the HSE representative emailed to state that the executive will proceed with the establishment of the reference group and that further consideration will be given to the issue of the steering group.

Let me be clear. There is no need for those in the HSE to exercise their grey matter. There is no need for the executive to give further consideration to this issue. The House made its decision on 6 February. Non-elected HSE representatives do not have authority over the decisions and determination of the Seanad. Every Member of this House should be very concerned by the brazen disregard of the decisions of this House by the HSE. I want to reiterate why this House passed my motion unopposed. A few years ago, the HSE used a steering group, the membership of which included service users, in order to develop its policy on service user engagement. This was the much-lauded and forward-thinking strategy on service user engagement by the HSE and the Department of Health. Authentic service user engagement is vital and best practice.

Our Children's Voice was represented on the HSE clinical group on domiciliary care for children. There are precedents for this type of representation. The parents making this representation today have long been organised in advocating on behalf of their children and have the necessary skill set to operate at steering group level. This is about listening to the real experts, namely, the people who live with this day in and day out. They are experts through experience and necessity. The HSE has a real opportunity to gain from their expertise. Our Children's Voice's mission statement indicates that it is "a group of parents, hoping to give children who have high medical/physical needs or life-limiting conditions a voice that will be heard". I ask the Minister of State to tell me why they are being silenced. Why are we allowing the HSE to dictate to the Seanad, which passed my motion unopposed in February? What is happening is disgraceful and disrespectful and it will be brought up in this House again and again until the HSE decides - or is instructed by the relevant Minister - to allow parents to join the steering group.

Jim Daly (Cork South West, Fine Gael)
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I thank Senator Devine for raising the issue of parental representation regarding the care of children with complex medical needs. Both the Minister and I understand the importance of this issue for parents. Children with complex healthcare needs have substantial medical requirements as a result of one or more congenital, acquired or chronic conditions and there is frequently a need for technological assistance and ongoing nursing care to support parents in caring for their children at home. The care of these children is best managed in partnership between parents and specialist medical staff who work together to help children lead as normal a life as possible and to avoid hospital admission. To this end, the Minister secured additional funding in budget 2018 to increase the number of clinical paediatric home care packages delivered from 507 in 2017 to 584 this year. I am sure the House will welcome this expansion of such an important service.

Turning to the specific issue of parental representation, some parents and representative groups have recently sought to be included on the HSE's primary care steering group for children with complex medical needs. Following discussion in this House on 6 February, the matter has been re-examined in recent weeks. However, as was referenced in the House previously, this steering group is a clinical group which, as part of its remit, scrutinises commercially sensitive issues relating to the business process. Representation on the group is, therefore, not the best or most appropriate means of securing the views of parents.

We all want to ensure that parents can contribute their full expertise and knowledge regarding the needs of their children. It is for this reason that the HSE will establish a parental reference group that will feed directly into the work of the steering group. Although some details are still to be finalised, it is intended that the reference group will have an independent chair and up to ten parent representatives and will include the national lead for children with complex medical conditions as a member. The group will meet up to three times each year. This will include meeting the steering group. The proposed structure will ensure that the voices of more parents from across the country can be heard directly in order to help us shape how we deliver care to their children.

It is also important to note that, as part of a national quality assurance process, individual meetings have taken place between the HSE and parents in respect of the provision of paediatric care packages and these meetings will continue throughout the year. The HSE will also be holding workshops with parents, which, again, will enable parents to be heard in respect of the needs of their children.

The provision of additional paediatric home care packages and the establishment of the parental reference group demonstrate that the Government is committed to supporting the families of children with complex medical needs and to ensuring the provision of a service that works for parents and reflects their expertise and knowledge regarding those needs.

Maire Devine (Sinn Fein)
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The Minister of State's reply is completely unacceptable. It is also disrespectful to this House. We did not have a discussion in February. We passed a motion unopposed. There is a precedent. Phrases such as "commercially sensitive" are always used to keep people's voices down. These parents are responsible and they will be accountable.It is disgraceful that the Minister of State is using the words "commercially sensitive" or a "business process" when we are talking about the care of the complex medical needs of our children. I am beginning to question the usefulness of this House or even the Lower House when the motion that was passed there on 22 March to abolish the in loco parentisclause and homecare nursing contracts for sick children has also been ignored. Where do we go from here when the wishes of both Houses are completely and utterly ignored and disrespected, and disrespect is shown to the people who we want to represent and get on those boards to have their voice heard? It is not acceptable from the Minister of State and I will be furthering this issue if I can find a way to do so and if I am advised by the Cathaoirleach how to best do so.

Jim Daly (Cork South West, Fine Gael)
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The role of the Seanad and of the Dáil is not within my remit. Senator Devine will have to take that argument elsewhere. On the issue, all I can do is to clarify for Senator Devine again that it is not appropriate in this instance that parents would sit on this steering group because of issues of commercial sensitivity. That is why it has been agreed to establish a reference group that will feed into the steering group, which will ensure that the voices of parents will be heard, which is very important to all of us, not just Senator Devine. I can assure her of that fact.