Table 4 Experience and Skills of Health Professionals – examples of families and health professionals accounts

Parental frustration

Families often reported being frustrated with the uncertainty around the diagnosis

We’ve been to [Hospital One] fracture clinic, we’ve been to see another specialist they just kept sending us to see different specialists, we’ve been to [Hospital Two] ward to see somebody … they just didn’t seem like they had a clue. … They were just passing her backwards and forwards, fair enough it is hard with kids … We were passed back and forwards and nobody had a clue what was going on erm and they were seeing her in this pain but they couldn’t do nothing for her (Mother: P14, age 6–26 weeks to first PRh MDT visit, Oligoarticular)

Health Professional frustration

Some families reported how health professional also appeared to be frustrated

You get to the stage when you feel like a pest when you’re ringing … One of the nurses I actually heard her on the phone, I rang and my phone didn’t have much signal where we live and I’d rang her on a Friday night because his neck was bad so the nurse had put a doctor on the phone and I was saying he’s been discharged but he’s got open access he’s on diclofenac, his necks bad, he’s got a temperature again and she couldn’t hear us properly and I went I’ll ring back and she went “And I can’t be bothered with this, with her with this problem” on the end of the phone. (Mother: P20, age 4–17 weeks to first PRh MDT visit, Polyarticular)

Differential diagnoses

Health professionals needed to exclude other diagnosis prior to referral

You see the child could have anything else which is acute in nature and you need to really rule that out before I refer it, so it is kind of bottom of the list that er a child will be suffering from inflammatory arthritis (Orthopedic Surgeon: P12, age 2–8 weeks to first PRh MDT visit, Oliogoarticular)

Things clearly weren’t getting better so you know we were clearly having to start thinking about other diagnoses as being more likely. … It wasn’t that I saw [P06] and thought “Gosh this looks very much like so and so” I think it was more a process of, erm, quite simply you know from what you read and what you are taught from text books you have a particular expectation of what something like a reactive arthritis should do and erm if its not doing that then you have got to think about other diagnoses. Now obviously you know I have seen a lot more cases of reactive arthritis than I have of inflammatory arthritis and perhaps another way of putting it is maybe its more to do with the fact that it was ceasing to look like a reactive arthritis rather than it was reminiscent of a child with an inflammatory arthritis. (General Practitioner: P6, age 1–4 weeks to first PRh MDT visit, Oliogoarticular)

Well it’s not a case of pushing it’s a case of she wasn’t listening. It was all Down syndrome in her eyes, it had to be something to do with the Downs and it wasn’t and because it, the stiffness was spreading in his neck and elbows and everything he was completely seized up! But it had to be Downs related. (Mother: P30, age 17–104 weeks to first PRh MDT visit, Polyarticular)