The results section comprises five chapters. The first three focus on findings from staff, with data from the survey used to identify whether or not staff perceive that inequality exists between children with and children without LD and their families (see Chapter 5). Findings from the organisational mapping exercise (see Chapter 6) and staff interviews (see Chapter 7) subsequently highlight the cross-organisational, organisational and individual staff factors in NHS hospitals that facilitate and prevent such inequality.
Chapters 8–10 focus on parents’ experience of being in hospital with their child with LD. These draw primarily on data from home interviews, supplemented by findings from the parent diaries and safety review form. Parents’ views on how well their child’s needs are met in hospital are reported, as are perceptions of their own role and the impact of hospitalisation on their health and well-being. Comparisons are made with data collected from parents of children without LD. The barriers to and facilitators of children with LD receiving equal access to high-quality hospital care that meets their particular needs are drawn out. Chapter 11 focuses on the findings from the parent and child survey about satisfaction with different aspects of the hospital experience. Findings from children are presented alongside data from the Talking Mats and sticker exercise.
The findings presented should be considered in the context of the Equality Act 2010,79 which sets out the legal duty health-care services have to consider the needs of all people with disabilities, including children, in the way that they organise their buildings, policies and services. This does not mean treating everyone the same but rather it means taking reasonable steps to avoid disadvantage arising from any provision, criterion, practice, physical feature or lack of auxiliary aid that puts any child at a substantial disadvantage.79 These ‘reasonable adjustments’ reflect the fact that some people with disabilities may have particular needs that standard services do not adequately meet80 but are entitled to expect equality in the outcomes of their hospital stays. It is recognised that people, including those with disabilities, can experience discrimination not just from individuals but from entire organisations such as hospitals, albeit unintentionally.79 Discrimination includes a child being treated unfavourably because of something arising as a consequence of their disability or if it cannot be shown that their treatment is a proportionate means of achieving a legitimate aim. The only exception is if it can be shown that the person/provider did not know, and could not reasonably have been expected to know, that the child was disabled.
The findings must also be considered in the context of discussions about equal access, equality and equity. Equal means ensuring that everyone has equal opportunities, with no one being treated less favourably because of who they are or what makes them different from other people.81 Both equality and equity promote fairness, but via different means: the former through ‘treating everyone the same regardless of need’ and the latter through ‘treating people differently dependent on need’.82 As highlighted by Social Change UK, ‘If equality is the end goal, equity is the means to get there’ (reproduced with permission from Social Change).82 An essential point is that treating people the same does not necessarily result in equity of outcome. Distinguishing between equality and equity is not necessarily straightforward, especially because the two terms are inextricably linked and sometimes used interchangeably.83,84 As Northway83 suggests, ‘a failure to make the necessary adjustments to promote equality of access to healthcare results in inequity’ (© 2022 University of Hertfordshire).83 In this study, we have been able to generate a large body of evidence about the way in which hospital inpatient care is delivered to and experienced by children with LD and their parents, from the perspective of multiple stakeholders, as well as drawing comparisons with children without LD and their families. Although we did not formally measure whether or not children and young people with LD experience equitable outcomes, our focus on equality revealed a lack of individualised hospital care for those with LD based on their particular needs, as well as a lack of policies, systems and processes to facilitate this. Our findings support the principle that ‘working towards equity and not just equality requires . . . seeing another person and their situation clearly enough to understand that what works for one does not work for all’.85 Thinking equitably may help those providing care to think more pro-actively about the need for reasonable adjustments83 and is an important factor in changing clinical practice going forward.