I think most people assume that hospitals are inherently 100% accessible for everyone. In my experience they’re some of the least accessible places, so I’m deep diving into why that is.
If you’re wondering about why my experience has any weight… well, I’m under 21 different specialties, I average four+ appointments a week, and I usually have at least 10 trips to A&E plus a one week admission every year. For years I've lived under one of the worst hospitals in the country and one of the best (NHS ranking, not mine), but everything in this article happened at both.
I’m an autistic, ADHD, ambulatory wheelchair user with no friends or family in my area to help out when I have to go to the hospital. I also used to have extremely severe mental health issues and went to A&E/UC for that several times. I will discuss this and the bigotry involved at the end of the article. Off the top of my head, the only experiences I can’t speak to are sensory disabilities (D/deaf, hoh, blind, and VI). Other than that, I think I’ve pretty much experienced the full gamut: masked, unmasked, regulated, melt down, walking, wheeling, screaming, stoic.
That being said, the following is a generalisation. I know there are exceptions, but that doesn’t change the fact that the following is accurate the vast majority of the time.
Neurodivergence:
Unpredictability—no one can tell patients how long they’ll be where, but staff will do the NT thing of lying about it to make patients… feel better?
Noise—in some places every bed has a tv, but there are no rules about volume or time. There are also many elderly patients with mental illnesses which impact their ability to be regulate their volume.
Lights—patients have no control over the lights, so this frequently causes sensory issues, migraines, etc.
PTSD—unfortunately, inpatients are frequently severely mentally ill and violent. However, outside of mental health wards, the staff have very strict rules about when the patient can be sedated, meaning there are many outbursts which can be deeply terrifying and traumatising.
Structural Access:
Porters—hospitals do not staff as many wheelchair porters as patients need. There is frequently a long wait, which can make the patient late to appointments. Some people also require this assistance, and the long wait, to get to the bathroom.
Directions—as most hospitals are multi-storey, there is no easy way to give a map for directions. This means it usually has to be verbal. However, sensory issues and sensory disabilities can make communicating this difficult, if not impossible. Being neurodivergent also changes the way people interpret directions, frequently making NT explanations confusing or insufficient. These issues are heightened if the person is dyspraxic, blind, or visually impaired and have a long or complex route.
Toilets—despite a large proportion of outpatients and nearly every inpatient needing an accessible toilet, they are a rarity. The ones that are accessible are usually out of service, blocked by hospital furniture, or not actually accessible.
Pavements—most hospitals have barely or not at all accessible pavement, meaning it’s difficult and dangerous for wheelchair users to even get there.
Checking in—while the desks are frequently lowered, I have never seen a mic that is located or able to be adjusted such that staff behind the glass can hear wheelchair users, little people, etc.
Medical supplies—hospitals are inherently a place for the ill and injured, but there is not enough room for inpatient chronically ill and disabled people to store their medical supplies. Furthermore, bays aren’t even wheelchair accessible.
Symptoms and Conditions:
Pain—uncomfortable, stiff, or overall inaccessible furniture can cause pain flares and serious injuries. However, this is frequently deemed as unimportant by staff, who are very slow to make these accommodations or won’t do it at all. On top of this, people who are prescribed pain killers as outpatients are frequently refused these medications in hospital because they don’t “look” in pain.
Immune issues—immunocompromised individuals are almost never protected from other patients. The NHS guidelines do not have a complete list of conditions which result in someone being immunocompromised. They instead have an “and others” bullet point. However, medical professionals aren’t taught about these in school, which means they frequently break guidelines by refusing to accommodate “and others” patients.
Allergies—cleaning products, perfume, hygiene supplies, bedding, extremely limited meal options, no access to a proper store, allergists rarely on call for A&E or inpatient depts, staff frequently refuse to check everything they give to patients, hospital pharmacies not having mast cell medications
Sensory Disabilities:
Sign language—interpreters are barely ever supplied. Staff illegally rely on friends and family, which is particularly problematic in emergencies.
Hearing aids—loud sounds like sirens or lots of background noise, both very common in hospitals, can damage hearing aids or make it nearly impossible to distinguish sounds.
Communication with blind and VIP—staff have abysmally poor training on how to alter their care to support blind and VIP. The simplest things like telling someone when food is set on their tray just isn’t done, and many staff outright refuse to share verbally or digitally with patients their written medical documents.
Braille signs—signage in hospitals is already basically useless, but my hospital doesn’t have a single sign or map in braille. This means that when blind or VIP need to get somewhere when the reception desk is very busy or unstaffed, it quickly becomes impossible to find the destination. Most people who become blind or VI later in life may not be able to read braille, but not so much as having it as an option is unacceptable.
Braille medication—medication boxes in the UK are required to have braille on them and an empty space for the prescription label. However, I can count on one hand the number of times the braille hasn’t been covered by the label. I’m on 14 prescriptions a day. This doesn’t even address the larger issue of inaccessible patient information leaflets.
Here is a link to the NHS Accessible Information Standard page detailing the NHS’ legal requirements. The website also has a bar on the left with links to the larger equality, diversity and health inequality legal duties; patient equalities programme; LGBT health; and NHS learning disability employment programme.
Social Issues:
Friends and family—disabled people are much more likely to be unhoused, so assuming they can have, for example, a change of clothes brought from home is very harmful. Disabled people are also more like to be no-contact with family, and the standardised assumption otherwise is frequently triggering, if not neglectful.
Ageism—staff intentionally fail to follow protocol when it comes to asking young people about “old person problems”—ie, fall risk or need for a carer.
Personal property—staff treat privately owned medical supplies like the hospital owns it, and they get mad when asked to not touch the items without consent.
Mental Health (TW SuAt, SH):
They lie about what the patient said.
They lie about what they noticed.
They intentionally guilt trip and manipulate patients in order to keep them from coming back. They purposefully make patients feel bad for wasting staff's time regardless of why they went.
They accuse the patient of faking, lying, or doing it for attention and tell them it’s not that bad or they need to get over it.
They force the patient to start meds they shouldn’t or stop meds they need.
They say physical issues are entirely psychological.
They almost always leave out medical history except for anxiety, depression, and conditions which society deems "scary." They rarely note if the patient experienced abuse, chlid neglect, etc.
Below are some of the questions from an A&E mental health form filled out for myself. The questions I included are both inherently ableist and lied about by staff. Of the dozen or so times that I went to the hospital for mental health crisis, only once did they not lie in the records. I did not specifically pick this form out for the negligence. It just happened to be the first of a roughly 300 page stack of various medical records I was sent.
“Appearance: well dressed, good eye contact, unkempt, poor eye contact” They only circled well dressed, ignoring both eye contact options. This conflates autistic traits with mental illness—the less eye contact the patient makes and the comfier they dress, the more likely they are to be hospitalised.
“Speech: normal, rapid/incoherent, slow/uncommunicative” I was non-verbal, and they selected normal. This is again conflating autistic traits with mental illness which requires hospitalisation.
“Affect: normal, blunted/flattened, very emotional” I was rocking back and forth, crying, and suicidal. They selected normal. This conflates autistic lack of emotional expression with not being mentally ill. With the above, being autistic makes the patient more likely to be hospitalised, but this makes them more likely to be gaslit, dismissed, and left untreated.
“Chronic pain/illness: yes, no” They put no despite being informed of my multiple, agonising disabilities.
This is the standard. This is to be expected. This doesn't even address the abuse.
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