Being a Disabled Patient: Negotiating the Social Practices of Hospitals in England

Stuart Read,Caroline Miles,Victoria Mason-Angelow,Val Williams,Pauline Heslop

doi:10.17645/si.v6i2.1308

Abstract

Accessing hospital care and being a patient is a highly individualised process, but it is also dependent on the culture and practices of the hospital and the staff who run it. Each hospital usually has a standard way of ‘doing things’, and a lack of flexibility in this may mean that there are challenges in effectively responding to the needs of disabled people who require ‘reasonably adjusted’ care. Based on qualitative stories told by disabled people accessing hospital services in England, this article describes how hospital practices have the potential to shape a person’s health care experiences. This article uses insights from social practice theories to argue that in order to address the potential problems of ‘misfitting’ that disabled people can experience, we first need to understand and challenge the embedded hospital practices that can continue to disadvantage disabled people.

Highlights

We start with a seemingly simple problem, that of ensuring that disabled people who need hospital care in the UK receive fair and equal treatment
In order to explore the experiences of disabled people, we first need to understand the terminology used by hospitals about their systems to become aware of disabled people and their needs
The many ways of being alerted to the needs of disabled people expose a number of hospital social practices that shape how an individual patient engages with the service, and participants in this study did not necessarily experience these processes in the same way as the professional logic, nor the hospital’s duties under the Equality Act 2010, would imply

Summary

Introduction

We start with a seemingly simple problem, that of ensuring that disabled people who need hospital care in the UK receive fair and equal treatment. Within the context of health care, the Equality Act 2010 provides disabled people with protections against being denied access to services, or receiving poor care, because of their disability. One protection is that health care providers must make changes or ‘reasonable adjustments’ to their existing practices to ensure that disabled people do not experience ‘substantial’ disadvantage. There is a requirement to respond to the needs of individual disabled people, by, for example, changing the timing or length of an appointment, or ensuring that a family member can be involved in a disabled patient’s care (Equality & Human Rights Commission, 2015; MacArthur et al, 2015). Despite the legal framework of the Equality Act 2010, it is known that there remain significant inequities for disabled people throughout the UK health care system, including issues with transport, waiting lists, and additional health care cost implications (Sakellariou & Rotarou, 2017; TuffreyWijne et al, 2014), and delays in diagnosis and treatment, such as for people with intellectual disabilities (Heslop et al, 2013)

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Conclusion