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Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: On the number of misdiagnoses and mistakes and so on, what provision has been made this year for people seeking redress?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I am trying to quantify the problem of misdiagnoses or mistakes by identifying the number of cases or persons referred to the State Claims Agency, for example.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: In excess of €300 million.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I ask that it be circulated to the committee. I wish to raise the case of a patient whose file noted that she needed urgent attention but that note was missed. Some 12 months later, she is terminally ill and nothing can be done for her. How long should it take for her family to be given access to her full medical file?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: No. If a person requests his or her full file, how long should it take for it to be made available to the person or his or her family?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: After 21 days, the family should be able to get the file.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: If a person does not get his or her file after that time, what action should be taken? If he or she has requested it from the hospital but not received it, where should he or she go to next?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: What happens if the patient dies while waiting for his or her file?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: Would that happen automatically rather than the next of kin having to go through the process again?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: That money could be spent on the health service. Members did not receive answers to the questions we submitted until this morning, which makes it difficult because to check the accuracy of the answers we are getting. It would be helpful in our engagement and representation of those most impacted on by our questions if we could be provided the answers a couple of days before the committee...

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I welcome that but that is off the table. I welcome it very much and it was hard fought for.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I know.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I really do appreciate it and without a doubt I absolutely commend the work that has been done, and I commend the organisations that have worked with the HSE to do this, but we need to know what happened, why it happened, why it was allowed continue, and who knew. We need a redress system in place similar to what is in place in France. I am aware of the good work that has been done but I am...

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: There was not an awareness of the patient. There was no awareness for the woman who was taking the drug. That is the problem.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: Where was the awareness and why was it not put on the packages so the woman or her GP could make the decision? Maybe her GP knew. I do not know. These are the kinds of issues we need to find out. I am glad that the Minister has not ruled out an inquiry. I ask that we take the learning from France and from Britain also, get this cleared up and get full accountability for what happened....

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I need to ask the HSE representatives about Translarna. I am completely up to date on that but I want to know when the decision is to be made. This drug is used for Duchenne muscular dystrophy patients.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: I understand that.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: When will the decision be made?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: Please, because as Mr. Connaghan knows we still have the five boys - and it is only the five boys - who are in a very difficult situation. I really hope that progress has been made with the second application. I welcome the fact that the legal case was taken off the table to facilitate this happening. I hope it will be a positive result. I must also ask about Spinraza. Does the Minister...

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (14 Nov 2018)

Rose Conway Walsh: Is that review group updated on the condition of the children? Do they take into account in their decision-making process the children who are very seriously ill and have been hospitalised or put into intensive care?

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