Barney James, Dave and The Loris: Dr Choccy and The Loris (Anaemia Saga) part 3: Foolish words from the so-called wise; incomplete forms and worrying practices...

So in the last post we had a quick - basic - lesson on Anaemia: what it is, what causes it and how to treat it. In this post you will get to share in the in-patient experience of this little Loris. Do try not to choke on your sustaining vittals as you read on. I warn you, we are also going to have to work together to look at how not to kill medical staff that are incapable of the following:

Listening to the patient.
Reading a patient's notes (that is the foot-thick tome (labelled "Volume I") that takes 4 medical students to carry);
Clerking a patient in; fully, precisely and WITH the patient's Active Involvement - i.e. by asking the patient all of the questions on the form;
Reading a patient's inpatient-notes (the ones at the end of the bed);
Ordering blood tests;
Addressing an adult patient at a level commensurate with their not inconsiderable knowledge and expertise;
Following up on tests they order;
Following up on things that absolutely should be followed up, had point 2 above been correctly carried out;
Understanding the various needs of the 'walking wounded'; those patients in wheelchairs and the long-term, ongoing and constantly changing parameters in stroke survivors and those with complex impacting factors that blur the focus (more on that later) of prioritisation;
Filling in the daily in-patient notes accurately, noting things the patient says - in relation to their health or treatment etc - this also impacts massively on article 7, above (itself already subject to article 2), and is, naturally, directly related to point 1, above;
Listening to the patient (let's face it, any doctor reading this has, by now, loooong forgotten what article 1 states);
Running up drips; and last (ish), but by nay means least
Basic procedures and protocols...

Oh-ho-oh yes. Just a few things to cover. I do hope that you have a huge mug of tea in hand (with more in the pot or vat), your favourite cake, or packet of biscuits if you prefer (weirdo), on your lap and a kitten or a dog (or other pet/s) to talk to when you start feeling apoplectic (so that your neighbours don't think that you are mad) as we begin... And... remember to breathe, and that I am alive, out of hospital and OK now, soooo here we go...

...I arrived at the hospital, half dead with my bag (which got heavier and heavier I'm sure - maybe the Archange de la Valette was sneaking bricks in when I wasn't looking!) and my burning lungs, and was overjoyed to learn that I was in a side room far from the madding crow. Win. Things were already starting to look up. I busied myself unpacking:

Bible (because Jesus rocks. 'nuff said.);
needlework (must. finish. wedding. gift.);
toiletries (crap - forgot the shampoo n cond);
clothes;
camera (you never know what you need to document...);
drugs (only a few. forgot some, had run out of others);
journal;
sweets (to keep me quiet: if an annoying doctor bothered me, I'd shove a sweet in my face and concentrate on it, not the doc);
laptop (for the pattern for the wedding gift);
chargers for phone and laptop;
pyjamas (Nightmare before Christmas, glow-in-the-dark. Because I can, that's why...)

Good work, Loris.

Not too long later a nurse came in to do all the swabs and obs. They also spent some time filling in a form, but I was asked hardly any questions except whether I was allergic to anything and then handed a Hospital Anxiety & Depression Svale (HADS) form to fill in, and was left to my own devices until an SHO came to assess me and get my history. So far, so good... I was amazed at this apparently flawless clerking process. However, the cracks became more visible when one doctor said the plan was for "two units of RBCs and a quick titration of Iron" and then a completely different doctor came in overnight and said "Nope, he was wrong - we only do blood OR iron, Not both together." Oh dear.

I was sitting there quietly fizzing and I reminded the doctor that my Hb levels were ridiculously low and that despite my O2 saturations looking good (for me) I was still incredibly breathless and severely intolerant to exercise - even turning over in bed was exhausting. But no, I was assured that I was now only going to receive blood. So the blood was up from pharmacy, the SHO found a lovely vein for the cannula and then the first unit was started, at 11pm, running 'til 2am. Ordinarily running blood cell transfusions overnight is not advisable, but since the Hb count was so low they decided to go ahead with one unit and then retest blood in the morning.

Day two involved an X-Ray, but the Porter hadn't brought a wheelchair and it took us well over 5 minutes with several stops to get from my room to the lifts. Mercifully there was an empty chair there, so we nabbed that. Once back on the ward a nurse came and started Unit 2 of the transfusion and made a right old mess of the line - some unfriendly-looking air bubbles were spotted and she just wiggled the line... Hmmm... However, to cheer my somewhat disappointed (in the staff) mood three things happened: (1) I had not one, but two visitors! First of all, The Inked Eskimo came in bearing a large Strawberries & Cream Frappaccino (since it was utterly baking whether indoors or out) and tales of a lack of suitable properties to live in. We had great chats over our delicious and delightfully cooling drinks (almost like a meal in themselves) and muttered about the ineptitude of some of the staff. Just as I shuffled to the lift to wave th'Eskimo off, Matron Bossy came out of a lift, bearing gifts of munchables and readables - always a winning combination! By this time (late afternoon), the site of the cannula was beginning to really give me some grief. It had, we discovered upon closer inspection, begun to track up my arm (ie was intent on creeping further up into the blood vessel) and was very itchy. With a bit of judicious prodding and a murmur of mutterings, The Loris may, or may not have, wiggled the cannula (accidentally-on-purpose) about to the point whereupon it wished to depart company from the vein. Oops! Showed it to a nurse who then disappeared to find 'my' nurse. Once the nurse arrived the cannula was swiftly removed and the arm bandaged...

...BUT (you know there has to be a big fat BUT somewhere) the following things were observed:

the nurse did not use alcohol gel to clean their hands;
the nurse did not wear gloves;
the nurse placed the removed cannula straight onto the patient's table, not on a prep tray or into a sharps bin; and,
the wound was not cleaned.

Once the nurse left Matron Bossy and I just sat there stunned and saying, "Did we really just witness that?! Did that really just happen?" We were not amused. (Not that you could tell from our inane cackling.)

So, visits over, nurse off shift and then the on-call Card (ie cardiologist) came along twittering about my going home the following day. I told him I needed iron and since no vampires had taken blood (because, er, the doctors had failed to book me in for any blood tests whatsoever) how could we know for sure that things were actually improving? The doctor huffed and sighed and said maybe we would wait until the weekend was over and talk to the Professor. Good idea, Sherlock.

Day 3 was - apart from the weather - really rather dull & devoid of much of anything - it was incredibly hot and I spent the whole day sewing the wedding gift for my friends (whose wedding I had missed the day before, on account of that Feral FeGang and the missing HaemoGoblins.) The highlight of the day was moving from my side room to a bay (bah!) - but the silver lining there was that I was right by the window, which meant fresh air and a view of the lovely church!!

Day 4: a registrar from The Team came to tell me that I was going to have the iron infusion. Cannula duly put in and then a wait of a few hours until somebody remembered my meds and I was finally hooked up to the iron. The saline flush hurt to start with but the drip was begun anyway with some seriously mean-looking air bubbles lining up for a party. The whole thing only lasted an hour, but it was by far the worst pain that I have ever experienced from a drip. Hilariously and, perhaps tragically, a nurse came to tell me to relax my hand and was trying to push my hand flat whilst I attempted to explain about the hypertonia following the stroke. Ridiculous! Drip finally finished so I turned the blasted machine off to shut the beeping up. Line was disconnected by a nurse and left trailing on the floor whilst she went off to look for the stopper on the 3-way tap (leaving my vein open, essentially... Later on the cannula came out - this time the nurse was wearing gloves and had a tray for the cannula to go in. But as the cannula came out so did some blood, onto the bed sheet. Said nurse attempted to mop the blood up using paper towel, merely succeeding in smudging it around. It would be another eight, 8, hours before the bloody sheet was changed... Oh, and the line was left trailing the floor for a good couple of hours, leaking the last bit of iron-infused saline onto the floor by the bed.

So, treatment and dramas over, day 5 was spent with me feeling horribly dizzy, nauseous and breathless and informing every nurse and doctor I saw of this fact. This was the day that I also finally got to peer at my end-of-bed (inpatient log) notes and was not the least bit amused by what I found there...

risk of falls was scored zero, 0;
previous CVA was not recorded;
no patient comments were recorded;
depression was not recorded or referred to;
memory and cognitive issues were not noted at all;
no referral made to mental health team;

Want to know what they should have said?:

risk of falls should have scored 4 in the very first instance because of the diuretics I take, further to that a previous CVA and existing spinal and hip problems put me at risk, as does the osteopaenia... in short, my risk of falling is far from zero!;
clearly someone somewhere is very, very stupid not to have (a) read my actual hospital notes or, (b) listened and taken on board my saying that I had a stroke;
every single day I would let the nurses know that I was feeling dizzy, sometimes I would tell them I was having palpitations, some days I was very breathless or nauseous, not one single comment was recorded. Every single handover included "no complaints or concerns voiced"... lies.;
despite being on SSRIs, my informing nurses and doctors, clinical depression was not recorded, the Health Psychologist was not told I was an inpatient and I had to ask several times to see them (finally on the day I went home, I saw them... come on guys!;
the fact that the stroke has left some degree of cognitive processing and recall aberrations should be taken into account, particularly when discussing treatment, taking history and forward planning; and
absolutely the MH team - especially my treating Dr - should have been informed!

A few snapshots of the week in Chelsea...
© The Loris, 2011

Really, dearest Hospital, this just will not do! What a disgraceful and flagrant disregard of the patient's needs! One is not impressed.

Furthermore, the weather on day 5 was awful, I felt terrible and at first the docs wanted to let me go home. Anyway, they changed their mind because having finally taken blood for testing they discovered that my Hb had dropped.

Day 6 brought sunshine and the ward round with the Prof. Considering this fellow is an expert in his field, he is remarkably ill-informed about the effects of stroke on a person. I was asked how I was. I reported dizziness and nausea, and that I had, in fact, almost passed out in the bathroom only that morning. No comment. Response was anoter question about the exercise I do, followed by "cycling is very good for you". Um, yes, but Prof, I had a stroke and have appalling balance as a result, also, how am I going to apply the brake? Swimming was the next proferring from this fount of wisdom. Um, sorry, I can't swim. I told him I walk a fair bit and that I like that. He then inferred that my depression could be cured by exercise because, "we all feel better after we have been doing some exercise because we start to feel healthier, blah, blah, blah". OK, I stopped listening... No! Mister Professor, I feel like shit after exercise, I throw up because my liver is congested after exercise, I lose my balance when I exercise because of (a) the stroke, (b) my inner ears and (c) my spine, pelvis and legs having slight co-ordination issues. Sometimes, Sir, I actually forget how to walk. I literally don't know which leg to lift to make the next step, especially walking down stairs. So, the latest Fat-Cat-led cure-all is never going to wash with me. I know my limits, I'm constantly pushing them, and I am infinitely more attuned to my body than you are ever going to be.

It really sickened me that someone who had not seen me in over six years could pitch up and talk such gibberish. I was really rather concerned as to exactly who had taken over a heretofore mild-mannered and brilliant doctor. I was then informed that an emergency referral was being made to see the ObGyn specialist at another hospital. Bearing in mind that this 'emergency referral' was promised in June, no referral has actually been made yet... (Just as well I know never to hold my breath, quite frankly.)

I honestly fail to understand why the medical fraternity (let's face it, it still is a boys' club) are utterly incapable of a holistic view of the patient as a person. It is not difficult, honest! I would dearly love to have the job of teaching doctors about the parts of the body that become somewhat of a mystery to ~~blinkered eyes~~, oops, specialists.

Still, all of this is more material for my book...

... Oh yes, and I got my niece's Birthday gift finished and the Wedding gift for my friends' wedding, look: