NHS: barriers to equal treatment

With the Care Quality Commission reporting inadequate levels of care with dignity in hospitals, research by Ruth Bailey indicates that disabled people in need of healthcare encounter a system largely ignorant of access needs and how they should be met

It has often struck me that disabled people are sometimes made to feel awkward or out of place in healthcare settings. This seems to have something to do with the fact that what goes on in these settings is necessarily focused on what is wrong with people. Yet when it comes to access in its broadest sense, the NHS assumes nothing is wrong. Its procedures and practices are designed for patients who are ill but non-disabled.

This assumption matters because it creates innumerable barriers for disabled people. This was indicated in the responses of the 28 people I interviewed for my PhD research. They reported difficulties ranging from distances to walk when using a hospital, doors that were impossible for lone wheelchair-users to open, through to the mirrors in the accessible toilets being too high for wheelchair-users to see in them.

Many of these barriers both within the NHS and beyond are no doubt depressingly familiar to Disability Now readers. This raises the question as to why they appear mysterious to healthcare professionals and planners, particularly in the light of the NHS’s obligations under anti-discrimination acts. What’s required is a commitment to assess and act upon the detailed access implications of building design and management as well as broader policies and procedures.

Perhaps one way of ensuring this happens is to continually alert the NHS to the experience of encountering barriers even when just accessing basic healthcare. This needs to be done from a social model perspective but it needs to look at the detail and immediate consequences of experiencing barriers not just identifying exclusion. This ties in with what my research participants were saying, that access is not all or nothing, not either excluding or including. Rather their descriptions suggested something messy and involved taking responsibility for handling barriers, often at personal cost.

For example, one participant described being made tearful when in hospital without her own wheelchair that the ambulance crew had refused to bring. In addition to unnecessary emotional upset, this participant also incurred the hassle and financial cost of arranging for a friend to bring the chair in a taxicab. Another participant described how she rang to check if the relevant department had access to a hoist. They said they had but when she turned up there was no hoist. She commented “They weren’t expecting me”, making her feel as if she was out of place in the NHS by virtue of being a hoist user.

Some participants also felt out of place during diagnostic or treatment procedures. This was apparent when they described clinical access barriers. Examples of this type of barrier included someone who needed assistance to avoid falling from a high, narrow bed, be it in the X-ray department or in the anaesthetic room. Another person flummoxed a radiographer because she could not raise her arms above her head as the procedure required.

Clinical access barriers arise because a disabled person is quite literally treated as if non-disabled, ignoring impairment-related needs. Because these needs are unique to an individual, clinical access barriers need individual solutions. To provide these, health care professionals have to be provided with appropriate training and support to be able to respond effectively to every individual. The flip side of this is that whatever the barrier, the healthcare professional makes the difference between a good and bad healthcare encounter.

Overall, the key message from my research is that responsibility for dealing with access needs to shift from the user to the service provider. With this in mind the focus of my current role as a postdoctoral fellow is on educating healthcare professionals. My research findings will be written up as articles for healthcare professionals’ journals. I will also develop training resources for medical undergraduates. The basis for these will be lectures I gave as part of a first year Health and Society course at the University of Edinburgh. Apparently when it came to the course exams lots of students used examples from my lecture. So I must have been doing something right!