Table 3 Parental quotes

Lack of Doctor Knowledge

"I think the first thing is the diagnosis, but I think most people find that difficult. The Drs [GPs] aren't always aware..." Parent 8

"She never heard of it in someone so young, we phoned social services - they'd never heard of it in someone so young. The doctor's [GPs] didn't hear of it, didn't know much about it, they said any leaflets we get could we pass on." Parent 3

"I mean, he knew he needed to do something, he wasn't entirely sure what he needed to do...I gave him a little push!!" Parent 4 referring to the GP

"He [GP] just said that she'd get tired and that sort of thing - everyone just thinks its tiredness when they don't sort of understand there's a lot of stuff that goes with it." Parent 3

"But of course you know it takes ages to get a diagnosis, so it was sort of December before we got a diagnosis but they [Paediatrician] wouldn't refer her across to the ME unit here, and it just, you kind of need a lot of support to start with to know what you're doing and we just didn't get that." Parent 6

"getting the wheelchair, the OTs, that sort of thing we struggled with...it was done through my knowledge... and I talk to a lot of people and a lot of people were giving me information. I had someone phone me to get a bit of help with the DLA, well we didn't even know we were entitled to it, no one said we could get a social worker who would deal with all this for us. Nobody told us anything." Parent 8

Attitudes and Beliefs

"Actually, he did not believe in ME and he had actually implied that in earlier visits and things...'he's putting it on, as far as I can see and as far as my team of people here believe he's strong...He's getting attention from being like this. He's obviously very depressed, very low" Parent 7 quoting Consultant Child Psychiatrist

"It was just the attitude of the Drs [GP] and then it seemed like within the practice, once I'd asked doctors then they just spoke amongst themselves....... That frustrates me, I wish they would take a different approach to both mental illness and ME and everything." Parent 2

Communication Doctors

"nearly every month we were going [to the GP] and it was just, oh it's a virus she'll be alright - and she wasn't!" Parent 3

"they [GP] talked down to you." Parent 2

"just make you feel a little bit...they [GP] just make you feel inadequate sort of thing." Parent 3

" The GPs and that they didn't really ask any questions and I wouldn't sort of, I didn't feel I could ask questions sort of thing." Parent 3

Communication Parents

"They [Child Psychiatry] wanted to know all about our home life, and they asked masses and masses of really probing questions and they would ask them in front of him, and I'm very honest with him but I just thought there were some questions that I wasn't going to answer in front of him. But they have this policy now that anything that's discussed is discussed in front of him so it felt like a lot of the things I was saying I had to censor 'cos I didn't want him to pick up. Also I was very aware that children can manipulate us you know so I didn't want to give him material to manipulate." Parent 7

"I can't describe 100% what's going on inside my daughter, I can just relay... what I see and what she tells me" Parent 2

"she said ' I can't see anything Adam' and she pulled her chair over and said 'why aren't you speaking? Come on Adam, tell me why aren't you speaking? Is something going on in school? Is something going on at home?' of course he didn't say anything. I'm right there and his dad's right there! And I thought, if something's going on at home...he's probably not going to say!" Parent 7

Effect on Parent

"So I did have a lot of sad, a lot of sadness because (the paediatrician) so wanted it to be (somatisation disorder) and I mean, I don't know if it is ME, if it is (somatisation disorder), but what's happening here is helping him, and that's all, I don't think the name, to me the name, I don't care about the name, I just want help for my child really. And to have to really fight, I don't think it's right really. And perhaps if my friends weren't so educated, I'd have been in a much worse situation really." Parent 7

"my goodness, I'd come home [from the GP] in tears. I was just grateful my mum was with us at the time 'cos I'd just come home and be like you know, I'd doubt myself. 'Am I being an overbearing mum? Am I being too soft on her? I questioned all these. But at the same time I'd be so mad 'cos I'd look at her and see she wasn't my usual you know, bubbly girl." Parent 2

".....so then I got a letter back which basically said that the mother was not being cooperative and all of this nonsense, so when I went to see the paediatrician. the next time he asked why aren't you being cooperative? If you want your son to get better you need to cooperate! So I said 'there's nothing to cooperate with!! You haven't offered me anything. This is just nonsense!'" Parent 7