photo’s from the ward

I took some photo’s of the various equipment I saw used – or more appropriately not used while I was in hospital for 9 days and thought I”d share with you. A major part of my recovery was getting up and walking and I’d do quite a few laps of the two wards on the 5th floor each day to help strengthen my muscles and get the blood moving. I also spoke to a fair few of the nurses during my time about there thoughts on the equipment and sadly it was as expected – they are really keen to embrace new technologies to help support there workload but so far they see “these machines” as something management came up with that makes life more difficult and adds administrative burden to their jobs rather than improving them.

we can do better

sadly what most people think of eHealth

log in screen for the one solitary laptop

I felt sad for this poor laptop, tied to it’s power plug, I never saw anyone use it and when I asked the nurses they said oh sometimes we use it for eprescriptions but most of the doctors can’t be bothered and just write it out at the bedside on paper.

I’m told it gets much more use down in the chemo ward with Peter Mac – maybe they should review why that is and implement some changes in usage or access for the other wards?

once logged in the screen the nurses have to fill in every time they see a patient

this is the screen once a nurse logs in through the fingerprint scanner on the side of the screen – you can see a video of me (rather foggy from the drugs apologies) showing the machine here but you can see that it’s more of a customer service pulse check rather than anything else. Most of the time the nurses just ticked yes, yes, yes yes and moved on – Only when the head nurse came in did she actually ask me each of the questions. They are supposed to do it every time they come into to see you and this I”m told forms part of their assessments on performance – I dont’ buy it and think it’s a waste of resource, once a day maybe or get the patient to say how they think their care is going?

Finally what ended up being used 99% of the time – good old fashioned paper, that got wet, was very difficult to read for some people and negated the money spent on all the other devices.

we are a long way off from loosing these

On the plus side talking to my surgeons and nurses – paper is good as it’s easy to see, easy to find – it always stays at the end of the bed. you can flick through it and get an overview of the patients status and it’s tangible you feel it and almost the response of your fingers adds something to the experience – and best of all it’s really cheap.

I think we can learn a lot from the designers who have done great jobs migrating the magazine experience to iPad, usability needs to be an essential component of how we develop these services – perhaps then people would have realised a tiny check box on a screen that is vertical rather than horizontal is really difficult for a nurse to click on.

I hope there is a future where at the end of the bed is a tablet, that is hygenic and cost effective but most of all easy to use – it senses who is logging on by their smart card secure readers and understands that this person is most interested in this sort of information and displays it in not just an easy to read format but an easy to digest and action format. The information is there to enable decisions about delivery of care – lets not forget that.

It can read information from various devices like the Personally controlled medication delivery – my morphine pump, the bed could even have sensors to show how long I’ve been out of it, the toilet been flushed (could pose problems as was it the cleaner, did I blow my nose?) my medications  – all sorts of things.

All of this is possible, but first we need to agree the infrastructure of how we build this system – if we are to have truly integrated systems we need to make sure we speak the same language or at least are open to sharing our languages (yes thats you big medical software firms) so that information can be readily shared and accessed.

I believe 2011 is going to bring some exciting developments to move us forward to this vision of a connected sustainable healthcare service.

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4 weeks post surgery, feeling almost normal

well tomorrow it will be 4 weeks since surgery and I’ve just come back from a trip to Daylesford, for those not in or near Melbourne, it’s a beautiful part of the Victoria state about 1hr 30mins drive north west of the city up in the hills, it is known for it’s scenery, walks, quaint town and having lots of therapeutic springs and mineral water – you may have heard of hepburn springs? anyway we (my boyfriend and the dog) decided to head there to do some walks as they allow dogs which is brilliant, a lot of national parks don’t, I’ve seen kids and tourist cause more damage than my dog but hey thats another story…).

I was a little worried as the longest I’ve walked so far has been a very gently 2kms around the carlton gardens near our house, and I know there is cellphone coverage and toilets not too far away if my guts went bad. But hey life is for living right?!

We took the 4.5Km round trip to the blowhole through beautiful eucalyptus forests trying to spot koala’s and praying the thick long overgrown grass didn’t hide any of the multitude of deadly snakes that call Australia home, thankfully we didn’t spot any snakes, unfortunately no Koala’s either. I’m told the best bet is to look at the ground for Koala poo and when you spot some look up, not really sure what there poo looks like, but this weird black tarry stuff sort of fitted the bill – alas no Koala’s above them.

The walk was fine and as i stopped to take a breather next to the river I thought wow, 4 weeks ago I was about to go into hospital, nervous, worried, anxious and now I am feeling good – 10cm of bowel, two tumours and some endo removed, a bit tired and a HUGE scar but ok.

I guess it’s a sign my body is in Ok health to be able to get back to almost normal so quickly, or maybe given that your large bowel is 1.5m the body thinks of well thats nothing…carry on as normal folks.

The only sore bits are the cramps, I’m told your body will find it difficult to go to the toilet normally for a while so I’m hoping these crippling gut pains that signal we need to find a toilet soon are just part of the healing process. Not much fun for anyone who is reading this and about to have this surgery – expect to get severe lower abdo cramps that will literally stop you dead in your tracks and you feel your legs might buckle underneath you, breathe – slowly in and out and hopefully the pain will subside – then find a bathroom and wait…. unfortunately you might wait a while – I was worried about overly active bowels post surgery I didn’t realise lazy bowels are just as much of a problem. Apparently small intenstine surgery leads to more loose stools and large bowel can lead to constipation. Make sure you drink plenty of water, walk as far as you can each day and a small half cup of prune juice at night works wonders to help you not live in the bathroom – oh and whatever you do don’t strain…. seriously… dont’ do it – the pain is NOT worth it.

I’m still debating whether to do anything about the various screw ups while I was in hospital – the main one being them lying about the surgeon saying he was happy for me to go home in the morning… that really pisses me off, that a stupid protocol or procedure stating patients must be discharged by 10.30 and that the staff are incentivized to stick to this could have actually caused me a major infection and luckily it will just be a major scar. I realise I’m going to end up with a much bigger and more prominent scar because of this and although i wouldn’t call myself vain, in fact I almost look at all the scars on my belly as proud battle scars of my fight with Endometriosis all these years, it’s still annoying that one womans decision to put her financial reward for meeting a hospital procedure instead of waiting till my doctor saw me means I have a thick purple scar instead of a nice little white one.

At the end of the day, I’m safe, I’m alive, I have those horrible tumours out of me and am hopefully on the way to feeling more energetic, healthy and happy, really at the end of the day thats what’s important.

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one week since leaving hospital

I thought I’d leave it a while to post again, give myself some perspective and time to think about things after coming out of hospital.

It’s been a week since leaving hospital and I have to say thats the time i’d most like to have video calling access to a nurse or to the surgeon. As you may have read in the previous post, my wound (from belly button to top of pubic bone) has a big gap in it, it’s not that bad about 6-8mm but it does look kind of gross and I think perhaps they shouldn’t have taken the staples out as early as they did. It will mean I have a much bigger scar this way which for some people would be a bit of an issue but hey it’s surgery number 6 for me and my stomach has a number of scars on it from both open and laparascopic surgeries, and to be fair I”m not sure the last time my belly was exposed to the public! Most of us are not blessed with barbie bodies and after the age of 25 should really keep it covered up – actually no sod that, thats a hideous way to think, people of all shapes and sizes should feel comfortable to wear what they like at the beach, me personally I’m embarrassed and I cover up my wobbly bits.

I went to see Frank the surgeon on Tuesday to just check the wound as my mother had gotten in my ear about it and I just wanted to shut her up that it was Ok and not infected. Seems all is fine and thats great news – wish i didn’t have to get in the car drive 30minutes and then find a park, then wait to see him – would have been great to be able to do it via a video call – but I guess would he have had the right information needed to assess the wound and me? So much of how you are is the colour of your skin, the way you walk, that look in your eye – will that be lost on video consultations?

I was right though and that stupid nurse at the hospital was in the wrong, she should not have let me leave the hospital before I had seen my surgeon and in fact she lied, I asked her whether Frank wanted to see me before I was discharged and she said no no I’ve spoken with him it’s fine he wants you to go – apparently thats nowhere near the truth. She had a management incentive to get me out of my bed by 10am – stuff the fact that my surgeon wanted to see me and inspect the wound before releasing me and was going to be in surgery till 4pm so couldn’t get there – DODGY… I’m quite upset by that really, it shows that money and process rules instead of people and safety – thats pretty horrific for a hospital right?

Getting back to the technology though I think it needs to be there to support existing practices and a lot of this talk of it “taking over” is a bit ridiculous, being able to maximise the time a doctor, nurse or whoever spends with a patient as “care” time rather than admin time.

The biggest thing I’ve wanted to have since leaving hospital is a trusted healthcare service or person I can ask the “is this normal?” questions to. When you’re in hospital they are there right on teh end of a buzzer to answer your questions help you out, tell you what to expect, but once you get home – you’re on your own.  Understanding what’s happening to you and thats it’s Ok or better yet it’s not Ok and please come in and do something about it – would be really handy.

I wonder how many repeat admissions would be prevented if people had an easily accessible video call number or just general call centre of nurses that specialized in post operative care, you could call and ask all your questions, or type them into a chat session online.  It would link to my personal electronic health record and I would grant them access to read about my operation and what was done and they could add notes so that in 2 months time when I go back to my surgeon he can see how my recovery went.

Particularly for things like bowel surgery where unlike a broken bone or something more visible it’s really hard to remember what your bowel movements or activity was like during the recovery period when your asked about it 2 months later when you’re feeling good.

I have started a little diary to monitor how different foods I”m eating are affecting me – I won’t get into too much detail but if you’re planning to get 10cm of your large intestine removed you do not want to eat anything that gives you gas or makes you constipated or need to run to the loo. Keep it nice soft and simple!!

Anyway enough from me – hope you all have a lovely christmas !

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Discharge disaster

hmmm so far this hospital has screwed up twice, in quite major ways… interesting given they are private and charge an arm and a leg.

First with the agency nurse who didn’t check on me, missed out my meds and didn’t do any obs for her shift.

Now the discharge process.  Not impressed. In fact quite literally might be scarred for life.

Nurse comes in this morning and says I’ve spoken with Frank your surgeon and he says you’ve had a bowel motion so you can go home – yippee? really home tonight when? don’t I need to see him? No he said it’s fine just see him in 4 weeks. We’ll take your drain out and the rest of the staples and you can go. Ok cool, I said stupidly thinking well if the surgeon said it was fine it must be Ok.

So two hours later, drain out, staples out, bags packed and ready off I went with some butterfly stitches things holding my guts together.

As the day progressed, so did the gap between the left and right side of my belly button, the scar was stretching open and a yellow oozy cavern was opening up in between.

Hmm… this doesn’t look so good, so I called the nurse and she said oh thats should be Ok go to the pharmacist and ask them to give you some butterfly stitches and try and bring the two sides back together. Ok sounds easy enough.

Off to the pharmacy, where the women in there sighed and said urgh put that away can you stand over there I might throw up… seriously it wasn’t that bad, and I mean pick the right bloody workplace if your squeamish why dont’ you – stupid woman. The pharmacist took a look at it and was like oh wow bowel resection oh yes, that looks nasty, I am not going to give you any bandages you need to go back to hospital immediately. Really ? i dont’ feel bad it doesn’t sting, it’s not hot or red or smelly (all the things my piece of paper said to look out for). So I called the nurse and lucky for us we live in an age of photo messaging.

So I took some snaps on my iphone of the wound and MMS’d them to her personal mobile phone (iphone to, trendy nurse:-) ) I had to send her a couple to get a good view of colour and light, but it is quite hard with a photo I think a video call would have been much better as you can talk and move the camera as you discuss.

sorry for the yuck factor

Anyway she said Ok lets call the surgeon and make sure he’s ok. An hour later of left messages and pagers and my mother having a heart attack saying, oh my god your going to have a huge scar, it’s appalling I can’t believe they did this to my baby – think nagging old jewish grandma overreacting and your getting close…

An hour later got through to Frank who promptly said to me why did you leave hte hospital and sounded really pissed off with me?

What the?

Umm the nurse told me you said I had to go? sheesh this is what happens when the staff are incentivised with how quickly they can turn around patients – after 7 days the hospitals start loosing money so they want you out of there so they can bring in the bigger bucks – screw your health.

So after being told I’d been bad leaving and then agreeing that actually no the nurse was the bad one, I asked maybe as St Vincents hospital is closer to me here in Carlton i should just pop in there and they can stitch it up – he inhaled deeply and said absolutely no way, dont’ let anyone else touch it, emergency nurse and also you shouldn’t have a pharmacist tell you what to do about a surgical wound they dont’ know anything about that stuff so don’t take their advice in future, and dont’ let anyone touch that wound except me or the nurses here ( I wonder if thats because he doesn’t want a future law suit or because he wants the best care?).

He said look your on antibiotics because it was red a few days ago this is probably some of that gunk coming out so better out that forming an abscess, Cover it with a dry pad and you can get it wet, just no soap or anything else in it. Lets see how it it in a week. If it gets hot, red, itchy, painful or smelly call me immediately.

So here I am at home hoping a stray dog hair doesn’t waft into my scar and wondering how much is business and how much is healthcare in this whole scenario.

oh well, at least I’m at home.



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we need that bed back!

Well it was very clear they expected me out yesterday, it felt like everyone knew about the schedule except me, and in particular my bowels. Still no number 2 as of yesterday and a lot of back pain with it. Nothing abnormal with the temperature or blood pressure or any of that. Just an excruitiating painful back for me – in a band at the bottom of the ribs and now having woken up at 2am it’s more localised as a circle that goes from the middle of back up to my let kidney and then down to above the hip – the lower left side is hell – that is where the drain is, well the backside of it, the drain is on my left lower side.

I’m told the hospital starts loosing money when you’ve been in there for more than 6 days so they are very keen to get you out of there asap. I understand they have a business to run too but when the commodity is sick people you should have better parameters to affect change.

So yesterday I was given a very strong laxative that they usually give pre bowel surgery and it gave me the most horrible stomach cramps and gut pain, cold sweats and nausea and don’t let me forget the taste… for anyone who has had golytely or colonlytely anyof those solution – we are a band of brothers who understand the lengths one must go to try and get healthy, thats for sure.

Well eventually it worked and I was able to pass a small bowel motion in which the nurses and doctors all cheered, to be honest I think it was because now they can get a new person in that they make money off rather than I might be getter better.

I haven’t been since then and they chucked one and a half sachets into me – that should result in more than just one small toilet run.

Oh well let us see what tomorrow brings.

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my video of the interactive patient screen in my room

Apologies I was on some rather heavy pain meds at the time so I’m a bit slow…. but you get the general idea I hope.
This video was me trying to show the touch screen I have access to in my bed and the good parts and not so good parts.

The nurses also use this to ask me how my pain is and whether I need anything – this information is used by management to grade the nurses and see how long they are spending with patients and how well they are doing there jobs. I think thats a bit stupid as some of the nurses forget to use it and some of them just swipe and tick yes yes yes yes and log out. It seems like a bit of a management centric idea rather than asking the nurses what might work for them. I think if you had RFID tags that monitored the movements of the nurses you’d get a better idea – they all work really hard, well most of them do – and a couple of questions on this machine won’t be sharing that with management in my eyes.
Usability wise the check boxes are really small and it can be quite fiddly to tick it – particularly as the touch screen is generally not flat it’s in a vertical position as people are watching telly on it so can be hard to select things as your eye looking at something from the top as it’s lying down – usual use of a touch screen – think iPad is different to looking at it in a vertical position – think TV or monitor.

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recovery is a rollercoaster

Sorry no post yesterday, I woke up in the most pain I’ve been in since being in hospital, largely due to an agency nurse who was in charge of looking after me overnight and forgot to give me medicine, do my obs or just generally do her job. A real shame as the majority of nurse’s that have been caring for me have been absolutely brilliant.

Anyway yesterday I woke up in a world of pain, my back by my kidneys felt like I’d been punched repeatedly by Mike Tyson with a baseball bat, my guts were on fire and every move sent waves of pain up and down each side. When my usual nurse came in at 6am even she was shocked – I’m not really a crying type person and I was in floods of tears, i think a mixture of pain and frustration of just not being able to do anything to feel better.

Luckily New fabulous nurse got on the case and gave me some painkillers and helped me breath and get through the pain till they started working and went off to sleep for a while – which is pretty much how I spent the rest of the day sleeping and taking pain relief.

I didn’t realise how important it is to stay medicated while recovering, it’s not a case of getting high or loopy it’s purely a case of suppressing the feeling of pain so that you can move around, sleep comfortably and do the things you need to do to help your recovery process. Not having any pain relief for 12hours puts you into a world of pain and actually takes a while to get on top of the pain relief again to a  point where you are back up and running.

Anyway today is a better day, for that I am grateful.

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