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EVERY beat is precious. The heart of Chris Price is supported by a pacemaker and with only 30 per cent function it drives blood around his fragile body.
His blood must be treated with haemodialysis three times-a-week as his kidneys have failed and his wife, Donna carefully monitors his blood sugar and diet as complications of type one diabetes required amputation of both legs.
Chris is only 63 years old but his daily fight to endure the challenges of chronic illness add years to his appearance his skin is grey and pallid and daily his family fear that his heart will again stop and he will have to travel to Newcastle to access treatment in John Hunter Hospital.
Years of love form the foundation of Donna's dedication to ensuring Chris is able to access medical treatment in the public health care system.
They are veterans of public hospital protocols and procedures and it is experiences of treatment in John Hunter Hospital that prompts Donna to declare "we would like never to have to go to John Hunter Hospital again as each time we have had a bad experience."
Cardiologist Dr Sesh Narasimhan is working with Chris to try to improve his heart and they are hopeful, but Donna says with that hope comes the stress of knowing they may have to return to John Hunter Hospital.
Chris and Donna now know the Mayo Private Hospital Cardiac Catheter Laboratory is in Taree. They know cardiac patients with private health insurance can access its facilities but they cannot, because they cannot afford private health insurance.
"We would be more than happy to take out private health insurance if we could afford private health insurance," Donna said.
"I am a full-time carer and because I am at home to care for him, I can't work. That's the choice we make and the choice we have to live with, and it is the reality for thousands and thousands of people. It is very harsh."
Chris and Donna applaud the proposal of Dr Narasimhan and Manning Hospital Medical Staff Council Chair Dr Murray Hyde Page for Hunter New England Local Health District to establish a public-private partnership agreement with Mayo Private Hospital.
Chris closes his eyes and smiles when asked how access to the Mayo Private Hospital would impact his life.
"The travel is really hard. It impacts on me, the travelling down to Newcastle, the stress of getting there and wondering what is going to happen and when it is going to happen," Chris said.
"It's a bloody worry and it plays on your mind something fierce. Travel is really hard for me because you are trying to get over one thing and then something else goes wrong, and then something else goes wrong it just keeps happening, it just never bloody stops.
"To have it here I am at home. Everyone is around me. No worries about accommodation. I've got my wife and my two kids, my grand kids they just can't drop everything and run down there. I can't expect them to do that and the costs coming out of their wages. They are only living on the basic wage, so you can't expect too much."
Donna is quick to speak to the emotional, physical and financial costs of receiving treatment in John Hunter Hospital.
"It makes him depressed. It makes me depressed. There is no support system down there, it is very inconvenient for people and it causes a lot of stress within our family," Donna explained.
"It would be so much better here because he would be getting treatment within an hour and not five hours. Last time it was a five-hour wait and we had already been at Manning Hospital for days and then he had to be transferred down there.
"I ended up transporting my husband in the car last time because it was faster."
Donna and Chris fear the scenario that he may die while in Newcastle.
"In John Hunter we have had so many incidents, so many incidents, that he has become so negative as to what goes on down there because they have nearly killed him so many times," Donna said.
"I second guess every single thing they do every single thing they do because we have had such bad experiences.
"His death is very real for us because it could happen at any time. The catalyst for speaking out is that it would be more comfortable to be at home with family if something happened to my husband.
"Instead of me being in John Hunter Hospital with nobody there if he did have a major heart attack and die I would have no-one there. I would have to drive home by myself in mourning. If Chris was here I could be with him the whole time and his family could be with him."
Donna reveals that she keeps a pillow and blanket in the car for her trips to Newcastle to support Chris while he is in hospital.
"Money is very important, especially when we are on a pension and it's very, very difficult to find money to pay for that extra accommodation as well as to live while you are down there, you've still got to eat," she explained.
"Every single day you have to try to find accommodation and sometimes you are there for weeks on end. It is very stressful and that's why I put a pillow and a blanket in the car so if I have no accommodation I will just sleep in the car.
"To not have to do that, to have my home, my children, my family we come from this area and all our support systems are here. Having a family around you is extremely important."