In the nurse’s room being treated after kicking-off
For almost 13 years I have prided myself on being a ‘perfect patient’. I have allowed doctors to stick tubes in unthinkable places, endured painful procedures, taken toxic drugs, and had so many abdominal x-rays that have no doubt done irreparable damage to my ovaries. At times I have allowed myself to be submitted to totally unnecessary painful procedures, under the misguided pretence that having a canister of gas shot up my backside would help control my condition – in reality i’m almost 100% sure this was just so some curious trainee could have a poke around in the dark depths of my colon.
I always thought that by being an easy patient, by being obedient, by smiling and going along with whatever treatment or course of action they suggest, by making their lives easier in any way at all, I would get the best treatment. I thought that by taking their word as law they would treat me favourably. I always thought by being the quiet one on the ward, who waited patiently for her pain killers and didn’t complain even when she was being starved to death by the incompetence of hospital staff (or other horrifying things) that I would get treated favourably as they would want to come to see the quiet and polite young lady patiently waiting in her tidy bed, while all the other patients screamed, kicked-off and threw things around the ward.
But it is horrifying to admit that the exact opposite is true. It has taken some very rude wake-up calls, some terrifying moments and some horrifying scenes of neglect to make me realise that being an angel means nothing to hospital staff and medical professionals. A hospital, especially a ward, is like a zoo. The patients are like caged animals fighting to get back out into the wild. Forget about survival of the fittest, more like survival of the most tenacious, rude and obnoxious. If you want something done, changed, or even want to get out to the real world in one piece you have to become a pushy patient; questioning everything; chasing up every result; and playing as many mind games on the staff as humanly possible (like a child playing their parents against each other). You have to forget being a quiet little mouse, work on your roar and step in with the big boys – start thinking like a lion, or better still a cunning fox.
The sad truth is (this might not be in every case) the more awkward you are, the ruder, the more difficult, the more you turn into the patient from hell, the better treatment you get, and the smaller the chance of you being left to lie in your own faeces for days on end, until a member of your family kicks off on your behalf. And that’s only when you’re on the ward. As an outpatient getting anyone to take you seriously or managing to get the correct treatment means – I have learnt the lesson the hard way – that you should never just let your GI have the final say without questioning things, or demanding a second opinion. It’s more difficult with your GI, surgeon or doctor, as if you kick off all the time they simply won’t put up with it, you have to get them to want to answer your calls and put you to the front of the queue, but I have started to find that simply rolling over and taking their word as GOD you will not gain their respect, and quiet frankly I’m done with massaging people’s egos…this is my health, my life, not a boardroom.
Even monks have to go to hospital it seems
Up until my most recent hospital stay I’d been the ‘golden’ patient, helping old people to the toilet, getting nurses for people in pain, pressing the call button when the lady next to me sounded like she was having another heart attack. I guess I always wanted to make the nurses’ lives easier. I was horrified by how understaffed they were and realised how little time they had to deal with little things when there were extremely poorly people to tend to…I guess that was always ok until I was the incredibly poorly person, and I was still ignored and treated by the other patients as a member of staff.
Recently I have begun to question everything absolutely everyone involved in my medical care does. I guess after 13 years of managing my own illness I have had enough of being the ‘perfect patient’ when the people who I rely on to keep me alive are not treating me with the respect I believe I have earned. When they simply refuse to listen to me. For years I have agreed to everything, which I find odd as in my job as a journalist I never let anything go without asking 100 questions…but when it comes to my health I have always just agreed, even if deep down I have known that it is quite simply not the right thing to do (the exception here is surgery, it remains the only time I have downright refused to have something done).
Ok, I’ve not turned into a raging bitch, or a hospital diva, but recently my patience has run out and I think my medical team has noticed. My GP surgery, who have really
Odd looking test results which I demanded to have explained to me
shown their true colours since my operation (they are so incompetent it is unreal), only started to treat me with a ouce of respect last week, finally taking my red raw wound seriously after months of giving me the wrong dressings, ignoring my symptoms and refusing to give me appointments, choosing instead to diagnose me over the phone…and what did it take to get them to sit up and listen you ask…me getting so frustrated at the latest act of incompetency that I boiled over with fury and kicked off in the almost-empty waiting area. The result? I got the royal treatment, with the head nurse seeing me immediately and treating my wound there and then. And, due to that it is starting to get better…so I might have felt bad for getting peeved with the clueless receptionist, but I can now sleep a little better without being in constant agony.
At last week’s appointment with my GI specialist I was determined not to take no for an answer. Ok, so they didn’t help themselves by highlighting their incompetence when the receptionist produced two sheets of paper instead of my file, and then tried to convince me that those flimsy sheets made-up my entire file. No, my file is as thick as a thesaurus. When I asked my GI where it was she admitted it was lost, but not to worry my confidential information would be somewhere in the hospital and someone would find it eventually. WHAT!!! Obviously this was so ridiculous I had to laugh, but it was a wake-up call, one that said if you want to get things sorted and get these people to listen to you your going to have to start taking matters into your own hands. I did! I questioned everything, I pushed for drugs, I said that feeling mediocre was not what I had signed up for and that I deserved to feel better, and guess what, almost 40 minutes after my name was called I emerged with a procedure booked, an appointment for the gynecologist and joint specialist (have been trying to get referred for 7 plus years) and some new medication to calm down my remaining colon.
Is this the perfect patient? If so, why do they wake us all the time?
Ok, not everything is fixed, but it is a step in the right direction, and I have learnt a valuable lesson that if I want something doing properly I can’t just hope it will happen I have to be willing to step up and fight for it. The years of waiting patiently are over I’m fed up of being fobbed off, I’m ready to get in the ring and really get stuck in and battle for my fight to a pain free life.
The big stoma bucket list 
As you know my situation is slightly different from yours, however I totally sympathise. Before being diagnosed correctly I was shunted from one specialist to another and played the dutiful and compliant patient always nodding in the right places never talking too much for fear of wasting their time. However once I was diagnosed with bowel cancer it all changed it was like I’d played my trump card, nothing was too much trouble or too trivial for 12 months I couldn’t fault my care or treatment. Now I’m in remission ( two months) it seems as if I’ve dropped off the radar the only way to get to see my GP is to use that same cancer card…without it I’m considered cured.
Great article
My dad is a perfect patient too. in 2009-10 he was hospitalised 4 times with pneumonia, and was finally diagnosed by our local hospital with asbestosis. He took advice and started a claim for Industrial Diseases Benefit & compensation (as much of his exposure occurred while in the Army). The treatment he was on helped a good bit so we were happy enough with the diagnoses. Then the solicitor said their expert at Durham Uni said he didn’t have asbestosis, and it was decided that Dad would get a 2nd opinion outside of our Hospital Trust, imagine our horror when one of the first things the new consultant (at Preston Hospital – I’ll big them up because they have been amazing) said there were 2 masses in his left lung, they weren’t sure what they were but (and this is the kicker) they had been there since 2010! Fortunately they were mostly unchanged and since biopsy itself holds a fair risk dad took the decision to wait a few months and see if they changed. They did, he had the biopsy and within a month he was at Blackpool hospital having 2 cancerous tumours removed.
I can’t express enough…My dad has had cancer for THREE YEARS! The day before the appointment at Preston where he was told he had cancer, he’d had an appointment at our local hospital, with a different doctor to the one who made the original asbestosis diagnosis, he said “I can’t understand why Preston are making a fuss, I can’t see anything on the CT scans.” My dad pointed out “Well there must be something there, they took FOUR biopsies from it!”
He’s done being the good, quiet patient too…we’re putting in a complaint & possibly starting a claim against the hospital for medical negligence (depending on the outcome of histology & his prognosis). We just want to avoid this happening to someone else, who might not be as lucky to have a 2nd chance to catch it. That said, we were told that usually it’s a 50% survival rate at 5 years, well, it’s technically already been 3… it’s terrifying!
That is terrifying. I can’t believe that anyone could still deny that they had made a mistake after missing something like that.
I suppose it just shows how important it is to get a second opinion. I would complain and claim if I was you as well, cases like this need highlighting to show just what can happen if you get the wrong specialist.
Thanks for sharing, and I hope your Dad is on the right track now.