Mattie McGrath (Tipperary, Independent) | Oireachtas source

I too would appreciate it if you would allow me to express my sympathies and those of my family to Vera Twomey on the death of Ava. They both fought such a battle for life. It just tells us how fickle life is and how some people get the short straw. It has been a constant battle. She had some battle to navigate the political system. It should not have to be like that for the sickest of children.

I compliment the proposers of the motion on raising this significant issue. The dysfunction in the HSE is just appalling. We could all raise countless cases. There is one family in Clonmel, the Arrigan family, and my late brother, who was a pediatrician, looked after their child. He is now a young adult. Every service is fought for and must be begged for with kicking and screaming. Ironically, his house is only from here to the Kildare Street gate away from the hospital, but at times they waited three and four hours for an ambulance. It is just shocking the effort Michael Arrigan, his wife, family and other siblings are putting into caring for this profoundly challenged young adult. They have significant issues with everything. They have got hoists and different pieces of equipment they need but it is always an unholy battle.

At the moment they have another battle on their hands because the system is so cumbersome. They have to get an awful lot of medicines. They are inundated with waste from bottles, plastics and Pampers nappies. It is not nice language, but it is shocking, and they cannot get any bit of respite or support from the county council on the disposal of the waste. The HSE will not take responsibility for it, and the county council will not give any discount on it in its bring centres. The cost is enormous. One would not imagine or even consider that there might be such a cost but it is enormous for the containers and other disposable equipment that they cannot dispose of. They are in a house on a small income and they are dedicated to minding their children.

The services in general are so hard to get. The home help system is typical in that regard. It is an utter scandal at the moment. The latest carry-on with the Ministers and the officials is that it is no problem and 20 hours of home help is approved or for one hour a day or whatever else, but they cannot get the staff. I meet staff who tell me that they are slack. They say they could do with another couple of hours a day. If I mention their names, they are punished. They are dismissed or moved to some different area, which is shocking given the work they do for so little. They provide such a valuable service to people. They light up their lives.

The State is piggybacking on the work of family carers. It neglects them and does not support them. We saw the battle with young Cara Darmody. The Minister of State, Deputy Rabbitte, met her. I know the Minister of State made commitments last week on foot of the Labour Party motion. We will be watching to ensure those commitments are fulfilled regarding assessments being done privately if the State cannot provide them.

People like young Ava should not have to be advocates and fighting with every ounce of energy in their bodies to get services and to circumvent the system. The system should be supporting them. It should not be such an adversarial battle. The system must be compassionate, patient-centred and look after people.

Mar fhocal scoir, I pay tribute to every family carer, every carer in the system, whether in nursing homes or hospitals, and nurses who look after the sick and people who are challenged.

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