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Purpose The purpose of this paper is to provide a commentary, from a parent carer perspective, on Murphy’s overview of the NICE guidelines and quality standards on learning disabilities and behaviour that challenges.Design/methodology/approach The paper discusses the NICE approach, the content of these specific guidelines and quality standards and considers their practical relevance, with a particular focus on families of children and young people with learning disabilities and behaviour that challenges.Findings Gaps in research affect recommendations in some key areas including around transition and early intervention. Risk factors are not linked to clear recommendations for early identification and prevention. For families, additional work is needed to highlight where these guidelines fit with related national law and policies. Families also need to see how the guidelines can positively influence commissioners to improve life outcomes and avoid crises and deterioration in behaviour. Although NICE guidelines are often condition specific, many of our children and young people have co-existing conditions and so do not fit neatly into just one set of guidelines. That is why data collection is very important to understanding needs and to effective commissioning. There is a need to urgently identify and address the research gaps so that essential interventions are included in future NICE guidelines and standards.Originality/value A family carer perspective suggests ways in which implementation of the NICE guidelines can be supported and argues for the importance of the further research that will strengthen future versions of the guidelines. [ABSTRACT FROM AUTHOR]

Aims: To develop a Disabilities Terminology Set and quantify the multifaceted needs of disabled children and their families in a district disability clinic population.Method: Data from structured electronic clinic letters of children attending paediatric disability clinics from June 2007 to May 2012 in Sunderland, north-east England collected at the point of clinical care were analysed to determine appropriate terms for consistent recording of each need and issue. Terms were collated to count the number of needs per child.Results: A Systemized Nomenclature of Medicine - Clinical Terms subset of 296 terms was identified and published, and 8392 consultations for 1999 children were reviewed. The required number of clinic appointments correlated strongly with the number of needs identified. Children with intellectual disabilities in addition to cerebral palsy and epilepsy had more than double the number of conditions, technology dependencies, and family-reported issues than those without. Disabled children who subsequently died had the highest burden of needs (p=0.007).Interpretation: Detailed data about needs generated outputs useful for local care pathway development and service planning. Sufficient evidence was provided for successful business cases leading to the appointment of additional paediatric disability consultants. Counting numbers of needs and issues quantifies complexity in a straightforward way. This could underpin needs-based commissioning of services. [ABSTRACT FROM AUTHOR]