Variation in health care for children and young people with cerebral palsies: a retrospective multicentre audit study

Abstract

IMDIndex and within the UK. [4][5][6][7][8][9][10][11][12] Applying and maintaining such standards, however, requires the collection and dissemination of high-quality data on existing best practice. The UK currently has no national data collection system to produce comprehensive population-based evidence of this kind. At present, such information can only be assembled by examining the provision and variation in care for disabled children with individual conditions where population-based data are already available.Cerebral palsies (CP) are the most common cause of physical disability in early childhood, affecting 2 to 3 per 1000 live births. 13 They are a group of permanent disorders of movement and posture resulting from non-progressive disturbances in the developing brain that cause activity limitation. These motor disorders are often accompanied by further disturbances of sensation, perception, cognition, communication, and behaviour, as well as by epilepsies, and by secondary musculoskeletal problems.14 The wideranging profile of disabilities arising from CP means they can serve as excellent exemplars of the range of disabling conditions that affect children and young people in general.The aim of this retrospective audit of medical records was to explore and describe the provision and variations in care over time, between districts and by socio-economic status (SES), for children and young people with CP in a defined geographical area of the UK. METHOD PopulationThe North of England Collaborative Cerebral Palsy Survey (NECCPS), established in 1991, is a consented population-based register of children and young people with CP

Are the health needs of young people with cerebral palsy met during transition from child to adult health care?

“…Further, they are health care needs arising from CP rather than from unrelated conditions. Items were selected (by Author 2) based on extensive clinical and research experience of working with young people with CP, and taking account of needs captured in a number of research studies and an audit of medical care in the Northern region of UK (Horridge, Tennant, Balu, & Rankin, ; Jackson, Krishnaswami, & Mcpheeters, ; Nieuwenhuijsen et al, ). The chosen items covered speech , mobility , positioning , equipment , pain , epilepsy , weight , control of movement , bone or joint problems , curvature of back , and eyesight .…”

The Health, Functioning and Wellbeing Summary Traffic Light Communication Tool: a survey of families’ views

“…However, a population‐based survey of clinical practice across northern England demonstrated significant variation in whether enquiries about the presence of pain had been documented in medical records. Those living in the most deprived fifth of the population were significantly less likely to have had enquiries about the presence or absence of pain documented than those who were less deprived . As well as improving communication for families, the HFWS also acts as an aide‐mémoire for clinicians, whether of many years’ experience or in training, ensuring that important areas known to affect participation and quality of life are adequately covered and addressed during consultations.…”

Comparing and sharing information across health care settings: a difficult but potentially invaluable task

“…If you pause to consider the many complications that would be involved in trying to answer some of these questions you may appreciate the work that Horridge et al . report in this issue as much as I do.…”