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

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.

Barriers to accessing cancer services for adults with physical disabilities in England and Wales: an interview-based study

“…While professionals typically have access to patients’ medical notes, they may only focus on the issues related to cancer, or they may not know how to address disability-related issues. This concurs with findings from Kroll et al and Read et al ,10 28 who argue that people with disabilities do not always get what they need from their interactions with healthcare services. Participants in this study sometimes went through procedures that were not appropriate, or they were made to feel awkward for requiring adapted or additional services.…”

“…Participants in this study sometimes went through procedures that were not appropriate, or they were made to feel awkward for requiring adapted or additional services. Read et al argue that people with disabilities often need to alert healthcare professionals, or flag disability, so that their needs can be addressed 10. Some of the participants in our study aimed to do this, by mobilising strategies such as verbally alerting staff to their needs.…”

“…Getting to and from hospital can be a complex undertaking, involving the coordination of family, friends, taxi drivers, hospital transport, and porters. The mere availability of transportation is not adequate; as Read et al argue,10 hospital transportation is sometimes not wheelchair accessible or runs to a tight schedule, to accommodate as many people as possible. Participants in our study also commented that sometimes they had to allow an entire day for hospital appointments, as they had to wait for hours to be picked up before and after appointments.…”

Pathways of disability-based discrimination in cancer care

“…Equipment and clinical procedures were often not adapted to meet the needs of the participants with physical impairment. As Read, Williams, Heslop, Mason-Angelow, and Miles (2018), report, disabled people do not always receive the healthcare services they need due to a disregard of their needs and an assumption of normative bodies, bodies that behave, move, and operate in the same way. This is an example of ableism, a form of disability-based discrimination that promotes an able-centric view, whereby tasks of daily living are expected to be accomplished in a normal way; 'disability represents a deviation from these norms' (Keller & Galgay, 2010:242), and thus it conflicts with these expectations of normality.…”

“…Lack of disability awareness can often be seen in the lack of preparation by healthcare systems to address the needs of disabled people, which was reported by several of the participants. Analysing the ways disabled people negotiate the social practices of hospitals, Read et al (2018) argue that in the absence of widespread disability awareness, it often becomes the responsibility of disabled service users to alert healthcare professionals to their needs; thus, disabled people need to be active patients, shaping their own care, compensating for the lack of disability awareness. They mobilise several strategies to do this: they find out what options are available, choose the ones that are best for them, and advocate for their choices to be followed.…”