Medical Infrastructure Excludes Disabled People – Results In Preventable Deaths
Disabled People Excluded From Medical Treatment! – You would think hospitals would be the best equipped for disabled people, considering how many patients arrive in wheelchairs and/or walking sticks. Sadly, this is not the case!
As a disabled person myself and my recent breast cancer journey, I have had quite a few dealings with the medical profession. Different hospitals, departments, and staff, doctors, nurses and oncologists. I am dumbstruck as to how excluding the health profession (as a whole) can be. This exclusion causes many disabled people from receiving the treatment they need. This can and does turn into life-threatening situations and yes, even death! This is my experience!
Before I go any further, this post is not directed at any one person, department or hospital. It’s a general overview of the medical profession’s infrustructure, highliting why so many disabled people can’t get the treatment they need. Right now, so many health professionals are putting their lives on the line for all of us. I’m so grateful for the treatment I have/am receiving.
My Experience
Considering the number of patients that a hospital treats, you’d think they would be better prepared for all walks of life. I’ve been in and out of hospital all my life and in this time, I have seen some positive changes, especially with attitudes but unfortunately, a lot of improvement is still needed.
Infrastructure is probably THE biggest issue, it definitely leaves a lot to be desired. Beds too high and not height adjustable and if they are height adjustable they still don’t go low enough. Disabled toilets that are not fit for purpose. Clinic rooms are too small to allow wheelchair users and their companions. The list goes on and on.
My experience as a patient in the medical profession spans over 50+ years. During this time I’ve had over 30 operations just related to my disability. I have been poked, prodded, a guinea pig gawked at, told if I bathed in Lourdes baths I would be able to walk without my caliper’s and even forced into a pair of new style calliper’s with the promise of being able to revert to my old ones if I didn’t like them. (A lie). My favourite, however, is being told ALL my problems would be solved if I lost weight! (I was seeing a so-called professor at the time regarding my vertigo).
Hospital Equipment
Equipment is probably the biggest reason disabled people can’t get the treatment they need. Take my radiotherapy treatment for my breast cancer. There was a lot of concern as to whether or not I would be able to get/off the radiotherapy bed. A “trial run” was arranged where I was taken to their CT scanner, (where they take patient measurements before treatment starts). I was able to transfer (with the help of hubby) on and off the bed. I was also able to keep my arms above my head using the stirrups attached to the bed.
So you can imagine my shock when in my first session of radiotherapy, I was unable to get up onto the bed. It was only then I was told the CT scanner bed can be lowered more than the radiotherapy bed! The point of the trial run then? Thankfully they had a hoist that I used. But what if they didn’t have one? I would not have been able to have radiotherapy.
Many patients have had treatment cancelled because of this very reason. CT beds or MRI beds being too high, a hoist is not available! How many patients have died because they can’t be examined or get the correct diagnosis or treatment? I have no idea what would have happened to me if I had been unable to get on/off the radiotherapy bed! What good are medical advancements if not EVERYONE can access them?
Disabled Toilets
Now we all know how terrible some disabled toilets are being not fit for purpose! A hospital of all places (where wheelchair users, patients on crutches etc are being treated) you’d expect to be the one place you’d not have a problem, right? Wrong! I have used so many different toilets in so many different hospitals and you would be shocked at how few of them I was able to use.
One’s where I’ve wheeled in facing the toilet and then can’t even close the door no matter how close I’ve got to the toilet, let alone transfer!
Patient Notes
The medical profession should have a system in place where patients’ needs are noted. I’m partially deaf, a fulltime-wheelchair user with IBS among many other ailments. None of this information is noted in my medical file.
If this information was readily available, this would make appointments run far more smoothly and quickly. I would not have to repeat myself at every appointment I have regarding my already existing medical conditions. As a disabled person, it takes all my energy to get ready and travel to my appointment. To then have to use what energy I have left to reel out my entire medical history, family medical history and any/all medications I am taking BEFORE even discussing why I am in front of you is exhausting, to say the least!
Having this information would also aid in having the right equipment available if a transfer is needed for an examination or treatment. Like at my radiotherapy treatment. The hoist (thankfully) belonged to that department so fetching it didn’t take too long. Once it was recognised I needed the hoist, it was always waiting for me at whatever machine I was on for that day. This proves having important information regarding a patient’s mobility/disability is extremely beneficial!
Mammograms, every time I go for my appointment (at the same place), their first words to me are “Oh sorry, we don’t have the facility to do wheelchair users”. I then have to explain (in detail) how I can remove my armrest and physically sit in a position to enable my mammogram to go ahead. There have been many times I have had to explain I have done this in the past on their machine at their hospital.
Hospital Letters To GPs
How many times have you received a copy of a letter to your GP from the hospital after your treatment and found it to be a fairytale rather than non-fiction? I am shocked at how many times my disability has been wrongly described, or how my disability/conditions affect me. It goes to show just how little the Dr/Surgeon/consultants etc actually listen to the patient.
This is most distressing when it is done to your face in the respect that you are made feel your concerns, illness etc are all in your head! After my heart attack, I suffered excruciatingly from vertigo. On a daily basis, I felt nauseous and dizzy. I couldn’t see properly, focus on the TV or read. Constantly felt like I was going to fall out of my chair or the bed at night. It affected me so badly that I didn’t even want to get out of bed each day. I became rather depressed over it all. Eventually, after a long battle with my local ENT clinic, I was given an appointment with a vertigo professor.
What a complete twat he was! He wanted my whole life history, I mean EVERYTHING! Only then to tell me if I lost half my weight, all my problems would be solved! I swear I am not exaggerating one bit. This dumbfounded me, something that very rarely happens to me. I left in tears! Here I was, not wanting to get up each day, unable to do basic functions, drive or communicate effectively with family & friends and he told me the solution was to lose weight?? AND HE WAS A PROFESSOR!!!!!!
Your Attitude Stinks
Over the years, attitudes (believe it or not) have somewhat improved. There is still so much more improvement needed but I think it’s heading in the right direction, just not quickly enough.
My daughter had to go for an ultrasound scan as a young teenager. She wanted me to go in with her as it was more of a female issue. When the nurse came out to call her in, I moved to go in with my daughter and the nurse just sharply said “There’s no room for that thing”. I asked her “what thing” and she pointed at my wheelchair. This was in the waiting area in front of other patients, I was mortified! I was made to feel like a failure as a parent. I wasn’t able to be there for my daughter when she needed me. Who on earth has the right to make anyone feel this way? Especially when it turned out to be unnecessary?
Her Dad went in with our daughter (yes, she was asked would she prefer to make another appt or have her Dad go in with her). After the appointment, hubby explained there was ample room for me to have been able to go in with our daughter. I was furious that our daughter couldn’t have her Mum in with her for no reason whatsoever! I made a formal complaint, for all the good that done!
After this rotten incident, I was extremely nervous going to any and all appointments for the fear of the same treatment. Thankfully, they are far and few between but it only takes one!
Who’s The Expert?
I have lived with my disability/illness for 52 years. How long have you studied my disability specifically? When I tell you something is wrong, DON’T brush it off! Don’t tell me it’s all in my head, or caused by my anxiety, stress, weight etc, etc, etc. Bloody well investigate further! I live with my conditions on a daily basis, I know my body and how it works/reacts. So when something is wrong I am not looking for attention, or wasting your time.
If I gather enough energy to get to a GP appointment about something, I have already waited on it for weeks, if not months or years. Telling me to keep an eye on it and book in again if it’s not better is counterproductive as mostly I now have to recover from the energy that has already been spent. I am my own expert when it comes to my body/condition. Respect my experience, listen to me and be willing to learn from me.
If I say my disability is acting up or a cannula isn’t working, I’m almost always proven right. Do you listen? No! I then have to face the consequences of your ignorance. Like the time I had to have an echocardiogram with dye. I told you the cannula was not in my vein but you insisted it was, my arm started to swell as you injected the dye. So which one of us was right?
Calipers
I have always worn calipers to walk, up until roughly 18 years ago when I was diagnosed with scoliosis. As a child, my calipers were supplied and repaired by a company hired through my school. He was lovely every time I needed to see him, friendly & helpful. Then he got an apprentice! That’s when everything turned to shit for me.
This apprentice decided he knew better than everyone else! He had invented a new style pair of calipers made out of nothing but thick plastic and guess who was the guinea pig? They not only looked ugly but were extremely uncomfortable to wear. I got blisters, and sores that bled. They were the biggest heap of crap I had ever worn.
He tried selling the idea to me chatting about how I could wear “normal shoes” with them and if I really didn’t like them after a trial run, I would be able to go back to my original pair. (You know, the ones I had NO problem with WHATSOEVER!!). After the trial run, I went back to him and told him I hated them, how they hurt me and wanted to go back to my old pair. He said this could no longer happen as my old pair had been destroyed! I was mortified!
Many years later as an adult, I was now under Hammersmith hospital’s surgical appliance department. (you know where I’m going don’t you?). Guess who was there? Yep, the idiot who lied to me. I told him in no certain terms would he be putting me back into those horrible plastic things. Needless to say, he remembered me and nearly shit himself and of course, totally agreed with me.
Waiting
Have you noticed how 90% of all waiting areas do not cater for wheelchair users? With over 1.2 million wheelchair users in the U.K, you’d think there would be a couple of places for us to wait.
Waiting areas are normally very small and cramped with no room for wheelchairs, electric or otherwise. Hospitals use internal wheelchairs to transport patients from one department to another. On top of other patients who use wheelchairs. Hospitals should be aware of the number of wheelchair users that would require space to wait their turn also. Yet sadly this is not normally the case.
Backtracking to patient notes, since my heart attack, I suffer from anxiety. As an IBS sufferer, waiting is a big issue for me as waiting for an appointment causes me a lot of anxiety. My anxiety causes my IBS to flare up. I can and have started worrying the night before, so by the time I turn up for my appointment I’m already a wreck. It would be really helpful if staff knew this so that if I’m rushing back and forth to the toilet and not in the waiting area when called, at least they may understand why. Of course, the ideal solution is to not have to wait too long.
Then there’s the “Oh, didn’t realise you were in a wheelchair, can you get out of it at all, not sure there’s enough room for it”? A lot of appointments are taken up with this sort of conversation and then them running around looking for an alternative room. This only prolongs the waiting time, which then makes my anxiety worse as now I feel a burden, then my IBS gets worse so needing the toilet again!
Conclusion
The health profession as a whole still needs massive improvements. Some improvements have already happened and seem to be moving in the right direction but it’s just not improving quickly enough. Advancements are also happening but these are no good to people who can’t access them due to failed accessibility!
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