What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)(via)
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Only 1/125 with severe CFS/ME and 49/263 (19%) with mild to moderate CFS/ME were seen within NICE recommended timeframe.
Increased fatigue was associated with shorter time to assessment (HR = 1.15; 95% CI 1.03, 1.29 per unit increase in Chalder fatigue score; P = 0.01).
Time-to-assessment was not associated with disability, mood, age or gender.
Parents described difficulties accessing specialist services because of their own as well as their GP's and Paediatrician's lack of knowledge.
They experienced negative attitudes and beliefs towards the child's condition when they consulted GPs, Paediatricians and Child Psychiatrists.
Parents struggled to communicate an invisible illness that their child and not themselves were experiencing.
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