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Table 3 Parental Persistence – examples of families’ accounts

From: ‘Snakes & Ladders’: factors influencing access to appropriate care for children and young people with suspected juvenile idiopathic arthritis – a qualitative study

Trusting health professionals views
Families have to manage the tension between trust and questioning the expertise of health professionals For instance we’d even try things at home which you’d know every child would be fooled by so you’d sit her at the other end of the room “do you want this chocolate bar” and she’d drag herself across the floor and you’d think well no child is going to drag themselves for chocolate they’re going to be up and running for it, so I mean to me that’s a fool proof plan (Father: P33, age 5–104 weeks to first PRh MDT visit, Polyarticular)
Managing your own feelings
On visiting a health professional, some families reported they felt they were perceived as overly ‘anxious’ [At A&E] she started to sort of come round by then, her finger had gone down a bit and I had sort of explained you know we have been having problems … this kid has been poorly since Boxing Day we need to do something. … while we were actually there she actually came back to life and she was running round like a lunatic again and you sort of think hang on a minute, they are looking at you as if to say neurotic mother (laughter). (Mother: P01, age 3–22 weeks to first PRh MDT visit, Systemic)
Seeking second opinions
Some families explicitly worked to see different health professionals other saw different ones by chance And then one day at A&E a doctor said “Are you happy with what I’ve said” and I went “Not really” … I was a bit, when they were trying to say like it was nothing basically I wasn’t too happy. … me Mam wasn’t happy and I think they could tell we weren’t happy, … they referred us to the A&E clinic so I had to come back and see a doctor in the A&E clinic, they still said there was nothing wrong with her so I still said I wasn’t happy so they said they’d refer her to a consultant, luckily the one in [local town] was on compassionate leave and they said I could hang on till they came back or come to the [other town] (Mother: P31, age 3–52 weeks to first PRh MDT visit, Oligoarticular).
I think for the third or fourth time … we had another set of x-rays done erm and a very stroppy consultant telling us that it was “all in her head” erm but, you know, “for goodness sake there was nothing on the x-ray”. … [another consultant] decided that we could come back to the fracture clinic the next morning and they would plaster her wrist as a precaution. … So erm we were trying to negotiate with the sister on the plaster clinic to, can we come at a different time … I knew the lady she said “Give me a moment I’ll ring the consultant upstairs, the adult rheumatologist” and she said “You need to come with me he’s actually up on the children’s ward” because he did different clinics “He’s got both sets of x-rays up on his computer screen as we speak” (laughs) we went to see him … we went up and he had both sets of x-rays on his screen side by side and that was the very first time he said “She had arthritis” and he said he wanted to refer her to [a different] hospital (Mother: P21, age 17–20 weeks to first PRh MDT visit, Polyarticular)