Ms Esther O'Shea:

Absolutely, and congenital heart disease is different from inherited heart disease too. They are two different diseases. Lifestyle support is huge, not only in reducing readmissions. As a patient, during my first two years of diagnosis I was in and out of hospital and very sick. Would I have needed to be in and out of hospital as frequently if there were supports within the community? It is questionable. When there was no support there, my only go-to was back into hospital - and it was not for a day or a week. I am talking about long stays.

Lifestyle management is a huge part of this, as is how we live with the disease and how we manage and access drugs. I refer to simple things like generic drugs and the supply chain. I and other cardiovascular patients depend on medicines. I cannot afford to miss one dose or not to take medicine. Medicine is why I am here today. We have to ensure there is a robust supply chain for these medicines going forward. Lifestyle encompasses all that: medication, healthy eating, sleep, psychological supports, physiological supports and financial supports. Many people out there are unable to return to work, had careers, worked hard, are educated people and are no longer in a position to work, and they are forgotten about.

These people are empowered every day, however. Heart patients are one of the most empowering patients I have been associated with because every day they get out of bed in the morning and have to take care of themselves. No one tells them, "You need to take your meds today: one in the morning, two at lunchtime and three at night. You need to weigh yourself, fill your jug with restricted fluids, manage your salt intake, count your steps, make sure your heartbeat does not go over a certain rate, take your blood pressure and, by the end of the week, send an email to your GP."

That is how empowered heart patients are. We have been doing that for so long that we have become complacent. No one wants to listen to us because we have just been getting on with it and doing it but we are speaking up now. We have to get support because the population is growing.

To touch on the national cardiac services review, six years ago, I attended a public consultation as part of that review. Patients, palliative care consultants, carers and parents travelled to Dublin and spent a full day at that consultative discussion. That meeting was facilitated and our needs, desires and views on where things were in the system were taken down. My needs as a heart failure patient six years ago were very different from my needs today. When that review is published by the Minister for Health, how current will it be? The process started six years ago. Come on. There were people who sat in that room with me that day who are not here any more. Those heart failure patients have since passed away. Are the needs we discussed that day going to be met by this review? It is too old and it is out of date. I would question that review.