Rónán Mullen (Independent)
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I congratulate the Acting Chairman on his elevation to the position of Cathaoirleach for the day. I hope this day is reckonable for pension purposes. I welcome the Minister of State. The issue I raise today is that of the so-called in loco parentisrestriction which, as he will know, applies to HSE home care. Essentially this means that when a child is receiving care from a nurse or other healthcare professional in his or her home, his or her parent is obliged to stay in the home for the duration of the visit or to nominate another adult to be present in his or her place. I understand that the restriction is applied as a matter of policy within the HSE and that, as such, it could be abolished at the stroke of a pen.

This restriction has a range of negative impacts on families. It renders the whole purpose of the home care package ineffective and it engenders an air of mistrust between parents and care providers. It is as if the HSE feels they cannot or should not be trusted to be alone with the children in question. It is also insensitive because it suggests that parents are somehow negligent if they leave their children in the care of fully trained healthcare professionals and that those professionals are not sufficiently qualified or trustworthy to have children in their care alone. Each one of these practical impacts of this rule is ridiculous. It is very distressing for people. One of these impacts is to render parents prisoners in their own homes and, in many cases, to deny them a break and an opportunity to leave their home to attend to other basic family matters such as doing the weekly shopping or getting their hair done.

Groups who represent parents and those who provide care in the home, which are groups to which we should listen very carefully because they are at the coalface, are scathing about this rule. The Jack and Jill Foundation says that it flies in the face of compassionate care. Ms Eilín Ní Mhurchú, the Jack and Jill Foundation's liaison nurse in Cork has said:

It is only adding to the burden of care for these families, it is not helpful. The HSE seems so far removed from the daily lives of these families ... They are not showing care or compassion.

Until March 2018, the Government repeatedly gave the same prepared stock answer to this issue whenever it was raised, particularly in the Dáil. That answer had three elements. It first said that the restriction was justified because these home care arrangements provide clinical as opposed to respite support. Second, it said that parental presence might be necessary for "an acute emergency such as respiratory arrest, decannulation of a tracheostomy or status epilepticus". This medical lingo was included verbatim in replies to several parliamentary questions, which suggests it is a copy-and-paste job from the HSE. The third part of the stock answer is that when the national quality assurance process is complete the national steering group for children with complex medical conditions will review the issue. The Minister, Deputy Harris, gave the latest version of this stock answer to Deputy Ó Caoláin in the Dáil last November. I hope that the Minister of State will give more than the standard reply today.

The position taken by the HSE takes a cold, formal, businesslike attitude to a situation that requires common sense and compassion on its part and on the part of the State. I note that on 27 March 2018, more than 15 months ago, it was agreed unanimously that the in loco parentisrule in home care contracts for sick children is causing unnecessary stress, worry and constraint on the parents of sick children. The Government was called on to abolish the clause immediately. As the Government accepted that motion 15 months ago, I ask the Minister of State to outline the progress that has been made on this issue since the unanimous adoption of that motion, whether the promised review has been conducted, and whether the HSE has or is about to adjust its position.

Rónán Mullen (Independent)
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I thank the Minister of State for his reply. It looks as if and sounds like progress is being made. I will examine the reply with care, although I do note the stock answer reappeared. My concern is the restriction stems from a bureaucratic or status mindset that insists on a distinction being made between clinical support and normal home care support, as we understand it. The fact that it is deemed to be desirable that there be such clinical support in the home shows an excessive distinction between clinical support and normal home care support is inappropriate and possibly unethical. Part of the clinical support component is the human dimension. Care of the person is or should be incorporated in clinical support. It does not necessarily require advanced training, but it is, nonetheless, a necessary part of clinical support. If we reflect on recent controversies about Holles Street hospital and the way it treated one couple who had lost a child, we really get the sense that sometimes those delivering clinical support are overly separated from the necessary human dimension of the care they are providing. The inloco parentisprovision sends a bad message which perhaps stems from an excessive desire to separate what is a clinical support responsibility from a home care support responsibility. One should be integrated into the other. I hope the new guidelines will make this point clearly and allow for something real and tangible in what the Minister of State described as the carer's break in order that carers will be able to take a break in such circumstances.