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Table 5 Key Themes- System Capacity

From: A qualitative study of health care providers’ perceptions and experiences of working together to care for children with medical complexity (CMC)

System Capacity

Fragmentation of care

We all hear about multiple plans, you have an education health plan that they do themselves, if there’s asthma or diabetes or any medication at your school. FACs have a plan, it’s not just a plan, it’s a health plan. Everyone at the damn table has a plan. Imagine for that one child, it’s not just 2 or 3 or 4, it’s 10 or 11 or 12 plans and what kid or parent is going to pay attention to that. (GP regional)

There are many different medical teams involved, but each team is focusing on their little bit of the body, and no one is actually taking a broad look at the whole child and the whole family. Particularly complex families get very lost in the middle of that system. (Executive Manager, urban)

If you want them to see the paediatric gastroenterologist because their inflammatory bowel disease has flared up, why do you need to go and see triage and see a junior doctor in emergency, and see a more senior doctor in emergency and a junior doctor on the gastro team and eventually contact the consultant who knows the patient well to advise how to treat the medication? (ED Doctor paediatric hospital)

System culture

The nursing staff were happy to do it but, the ENT department put a block to it and said they don’t want any child with a trachy on the ward ‘cause they’ll ultimately be responsible for it and the irony was that this mother had to care for it herself (Paediatrician district hospital)

I think it’s dependent on the specialist from each tertiary hospital. Once they’ve had experience with (the local health district) paediatric ward or outpatients or whatever, they then trust you, they get to know you, the care that you’re created. And it is growing, it’s slow but it’s growing. (Paediatric Nurse district hospital)

In our kids’ ward, if a patient’s there for more than 5 days, parents start worrying that we’re not doing things right. It’s almost a universal base hospital thing, there been there 5 days, they need to go somewhere else. (Paediatrician regional)