Thursday, 1 April 2021
Prime Time Investigates Programme on Department of Health: Statements
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
I will ask the Minister of State a few questions and she might come back to me. April is Autism Awareness Month and I am so sad that we are here discussing the revelations revealed about how families with autistic children were treated so terribly. I want to take this opportunity to thank Shane Corr for highlighting these practices. I appreciate that these revelations came as a surprise or even a shock to people.
I appreciate that the Minister of State has only been in her position a short time and that she is doing her best but trust has been broken here and we have to fix that. I welcome that there will be an investigation and that the Data Protection Commission has launched an inquiry into the processing of this personal data, but I want to know if there will be accountability. What happened was wrong. There was an admission that this system was operated under the law. The law they were operating under was an old law and was superseded by EU law. This highlights again how the general data protection regulation, GDPR, is often misunderstood, misused and incorrectly applied.
There is a legacy of a lack of communication and that has to change as a matter of urgency. Good people try to do their best but if there was any misunderstanding of what was permissible, then we need to find out what that was and address it. We need to trust in the system because without it we lose the people. We need the whole truth and nothing but the truth. We must have that in order to rebuild trust.
Is this a practice which crosses Departments? So many of us agree that this breach of confidentiality between doctors and patients is wrong but is it a widespread issue? We all have to ask if these are the only kind of files being kept. Is this a system where all litigation means a file is kept? Why do doctors and professionals feel they cannot refuse when asked to send such records? That is a question we must ask. A citizen struggles to get his or her information from doctors if he or she is changing doctors, for example. Those people are not handed their information. They have to apply for their information. Why was it so acceptable, therefore, for doctors and health professionals in schools to just hand over this private information? One constituent who is entering the system to query autism for their child told me this week that he or she does not trust the professionals who are there to protect or do right by the child. Is that not just so sad? This will be a major problem.
We need to rebuild trust between the public and the State agencies and not break it down. We must do everything in our power to protect and fight for our children. We must not rob them of privacy or gather secret files on them. We must open up and be kind and warm. We must find a way to help every one of them. We have to have a culture shift. These families are looking for the right to have their children educated, supported or cared for. They are not the enemy and that should never have been the case. The Minister of State might come back to me with some answers.