Oireachtas Joint and Select Committees

Wednesday, 8 November 2023

Joint Oireachtas Committee on Disability Matters

Rights-Based Care for People with Disabilities: Discussion

Professor Jim Lucey:

For the record, staffing is one of the regulatory standards which approved centres - inpatient units we regulate - must meet as part of their licence to operate as an approved centre. They must meet that minimum standard. If they breach those standards of staffing, it comes through in our checks and balances system, and it is highlighted and action taken if necessary to address it. It is one of our core regulations and breaches are taken seriously. We can only do that within the place where we have the regulatory authority through the legislation. We cannot comment on the staffing arrangements in outpatients, CAMHS and so on. The legislation could give us that permission, but at the moment it does not. We simply regulate the inpatient services.

The Deputy mentioned antipsychotics, and there is a great deal of difficulty with the apparent complexity of these varieties of medications. Broadly speaking, what are referred to as antipsychotics are medications, which block a hormone, namely, dopamine, throughout the body but particularly in the brain. Dopamine is a driver of behaviour, impulse and, actually, of joy. Blocking it has huge effects on children and anyone else if it is not appropriate to meeting a clinical need such as a disorder like a psychosis. There is a balance that needs to be tested as to whether it is right that a child or whoever should have that blockading their system. It could be justified if there is a clinical need and if a commitment were made to continue proper monitoring in a regulated centre. However, it is hard to justify, and I find it difficult to justify without that context. My predecessor, Dr. Finnerty, made that quite clear. When that medication is started, it needs to be monitored, even in ideal circumstances. Once commenced, it must be monitored in an ongoing setting. If you block dopamine, a lot of other consequences are attached to that, including metabolism, weight gain, diabetes and a whole series of things. Not monitoring someone whom you have commenced on that cannot be defended. Dr. Finnerty's report does not defend it. It is one of the reasons she said that she cannot guarantee the parents of Ireland that they are getting a service for their children, or that the children are getting a service they should have. The Deputy is right to raise the issue, but it is not just the nature of the medications, which in any case is quite something. You are blocking part of the hormonal system of the brain. It is the question as to whether that is a balanced judgement for and against risks and benefits in the context of a certain number of individuals, in this case children, and whether that is monitored safely because the consequences and side effects need to be monitored. Without that monitoring, it is not safe practice.

On services and waiting lists, we do not have the power to regulate, monitor or issue instructions or guidance around guarding waiting lists in CAMHS. I think the guarded dual diagnosis is a core one. The key message of Dr. Finnerty's report, not to be too psychological about it, is that the whole picture is one of disintegration and the answer is reintegration. Dual diagnosis is an attempt to recognise the holism, humanity and the whole picture of the individual young person who is suffering. It is contrary to any holistic notion of clinical care not to be dualistic in diagnosis. In fact, there needs to be multiplicity and layers of recognition of need. It is the only way you can defend services. The fractured nature of services means it is possible, if not good, for services to say they will deal with one part of the issue but not the other. A regulated service would not tolerate such a thing. It would say there are differing challenges, but it would see the individual as a holism. Dr. Finnerty's report is firm in its recommendation. She describes four integrated steps. She recommends a one-stop, united service that directs a holistic approach to the individual. We hold that recommendation.

The admission of children to adult units is a breach of a specific standard with regard to regulation of the approved centres. That phenomenon is one that has worried us, but I can assure the Deputy it is steadily going down as a result of our regulation. It is an indication of why regulation works. The centre doing this is conscious it is a breach. It is working with us to ensure arrangements are made. The Deputy named one centre, which may or not be utilised fully. It is one of the regulated centres in our remit.

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