Maire Devine (Sinn Fein) | Oireachtas source

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.