Health, education, and social care provision after diagnosis of childhood visual disability

Abstract

Aim: To investigate the health, education, and social care provision for children newly diagnosed with visual disability. Method: This was a national prospective study, the British Childhood Visual Impairment and Blindness Study 2 (BCVIS2), ascertaining new diagnoses of visual impairment or severe visual impairment and blindness (SVIBL), or equivalent vision. Data collection was performed by managing clinicians up to 1-year follow-up, and included health and developmental needs, and health, education, and social care provision. Results: BCVIS2 identified 784 children newly diagnosed with visual impairment/SVIBL (313 with visual impairment, 471 with SVIBL). Most children had associated systemic disorders (559 [71%], 167 [54%] with visual impairment, and 392 [84%] with SVIBL). Care from multidisciplinary teams was provided for 549 children (70%). Two-thirds (515) had not received an Education, Health, and Care Plan (EHCP). Fewer children with visual impairment had seen a specialist teacher (SVIBL 35%, visual impairment 28%, χ2 p < 0.001), or had an EHCP (11% vs 7%, χ2 p < 0.01). Interpretation: Families need additional support from managing clinicians to access recommended complex interventions such as the use of multidisciplinary teams and educational support. This need is pressing, as the population of children with visual impairment/SVIBL is expected to grow in size and complexity. What this paper adds: One year after visual disability diagnosis, one in three children had not received the recommended care from a multidisciplinary team. Two-thirds had not yet received the recommended Education, Health, and Care Plan. There is an under-provision of recommended care, despite significant and complex need.