This whole playing at being a pancreas thing does take up a lot of time. Changing infusion sets, bolusing, carb counting, hypoing, they all eat away at my time. Normally it all fits in with my life and I don’t really notice it. But every now and then it makes a bid to take over. I’ve just looked at my diary for the next few months and am wondering whether I should pack in work and become a professional diabetic. I certainly have enough stuff scheduled to fill my time.
I’ve just had to cancel my diabetic clinic appointment that I was due to go to next week. I really wanted to go because my pump is 4 years old next month so I need to get a new one ordered. Sadly though the day job is getting in the way of the diabetes. While I’m a full time diabetic I do also have a job. That job pays the mortgage, allows me to pay the bills, buy food, all that boring stuff. Plus I quite like it. The broken pancreas contributes nothing to the household income but expects a lot of time in return.
In addition to the day to day stuff, over the next 2 months I need to:
Go to diabetic clinic – a big meeting that I need to be at in London next week means I can’t make my clinic appointment so that’s now postponed until early March
See the chiropodist for my annual toe tickle to check my feet are still attached and working
Have the usual joyous experience of going into the opticians with perfect vision and coming out feeling like I’ve been poked in both eyes with a blunt stick to make sure no unscheduled fireworks displays are taking place at the back of my eyes
Sort a new pump and hope that I don’t have to argue for my funding to continue
None of which can be done outside of work hours.
Competing for the same time are two massive work projects, a couple of looming deadlines, a need to significantly reduce my team’s budget and a large collection of odds and sods that they pay me to deal with. Normally I can balance it but it just all seems to have come at once for some reason and I do resent having to choose between my career and my health. Of course, in reality I won’t choose. I’ll prioritise. So, I’ll go to the eye appointment because I don’t fancy going blind and I can’t check them myself. I’ll probably postpone the toe tickle because I can see and feel my own feet and they don’t look like they’re going to drop off any time soon. I’d rather not make that choice but I do quite like my career.
I’m starting to think we need a new awareness campaign “Diabetics have jobs too”, “Help the pancreatically challenged professionals”, “Pancreases are broken 24/7, so why do we only service them 9-5, Monday to Friday?”
Yes yes yes! I despise the way my local hospital blithely tells me I have to attend their eye clinic at 2.30pm for a 15 minute eye appointment on some random day. The Royal is a good half hour away from my office by taxi and so I have to take several hours out of my day to attend. For some reason said eye clinic can’t be done at the same time as my pump clinic – which I also have to take time out for. None of it can be rearranged to something convenient, or – indeed – rearranged at all.
Contrary to popular belief I am usually quite busy acting on behalf of large corporate clients in international intellectual property disputes (I’m not making this up, I really do do this); it’s actually quite a bother to drop everything, take hours out of my (and my company’s) day to trail up to the Royal for a 15 minute appointment.
You might be getting the impression this really gets on my wick. If so, you’d be right.
He he! I think you’re wrong about a great many things dear co-writer, but on this occasion you have indeed struck a nerve! Crappy appointments make me very eggy.
If I have an appointment (and I’ve been batting at least one a fortnight for the past 5 months, plus wife’s antenatal stuff) then I bloody well go to it and hang the job! You can always make the time back later 🙂
@tim – how does two 30 min taxi rides + 15 mins appointment = several hours? 😉 It’s just a lunch break that is! @alison – with so many appointments recently, I’ve taken the rather novel approach of booking them at 8:30 or 4:30. All I need to do then is start a little early, or finish a little early. Simplez!
Well someone had to break up the love in and disagree with you didn’t they 😛
@stephen It’s typical that the legal eagles are the ones that are moaning here 😉
@tim & @alison I do actually agree with what you have both said and also think that “trying” to schedule appts. for either early morning/later afternoon to minimise the distress involved.
Saying that, I couldn’t care less seeing as I can work in my PJ’s (actually I don’t own any, but that is beside the point) from home so the work around more straightforward for me.
One final thing! What happens if your not at the office for a morning or afternoon? @tim Don’t answer that 😉 but will the business seriously go into administration whilst we are all out having tickled feet luncheons with our diabetes teams… 🙂
I work from home so I do have a lot of flexibility and if I have an important appointment that needs dealing with I bloody well go to it too.
But as a customer I would prefer to have a choice in when I access routine services. And there are plenty of people who don’t have that level of flexibility, which means they’re at a huge disadvantage in the workplace simply because of a dodgy pancreas and a system that doesn’t acknowledge that not every diabetic is retired. I also travel a lot so there are huge chunks of time when I’m just not near home to go to appointments.
I know the world will continue without me and it does frequently, but I like my job and I don’t like having to take time out for appointments that could just as easilly take place at night or weekends.
@alison I hear ya loud n clear. Travelling is, as you say a major problem and as you mentioned, there are countless others that do not have either the time or the flexibility to attend such appts,
I’m pretty lucky here, the Hospital is a flagship for Microsoft and utilise technology to fullest extent which allows the consultant to make further appts. there and then affording more flexibility for me/us.
Other appts, well it is case of trying to attend if you can.. Although we have the facility to book appts, amend them as well as cancel appts..
Some would call me a gentleman of leisure, some would call me a drain on society, a sponger and ne’er-do-well scrounging on benefits; ya pays ya money and takes ya choice! What this means though, is that I have no work/health conflict, I can dedicate my life to my insulin resistance. The truth is, I would much rather be trying to fit my appointments around a job. I don’t want my feet to be turnips; I’d like to be able to stand and bag my groceries at the checkout without pain; I’d like to stride around the countryside without getting breathless in the first ten metres; I don’t want to wake after two hours sleep feeling as though my toenails are being peeled back.
Admittedly, some of this is self inflicted like the COPD caused by smoking, but the bad back and obesity are down to long years of driving lorries (before sprung seats were even thought of), and humping tonnes of stuff on and off them, plus a congenital spinal defect. Combine that with an horrendous diet and you have a recipe for ill health; to coin an Americanism, life sucks!
I know that the life/work balance is difficult, but revel in the challenge! Soon enough that choice may be taken away from you! Whatever else you do though, you need to be the best surrogate pancreas you can be.
Open question to the panel. Do you think you would perhaps make more of an effort to attend these ancillary appointments, if for arguments sake you feel control is better/worse than previous visits.
Again, I’m atypical @mikeinspain I think I probably have more autonomous control than most diabetics, T1 or T2. Basically, I can call on my DSN ‘at need’. For instance, if I’m going through a period of denial I can make regular appointments weekly, fortnightly, or monthly in order to get my arse kicked and keep me in line.
Normally I have an HbA1c every three months, but I could get additional tests if I thought I needed them. I’m currently battling a rise in my HbA1c from 7.3 to 8.7 (June to November last year), so I’ll be making an appointment shortly to see if I’m winning! The short answer though is yes! I’m much keener to keep appointments if I don’t think my control has been good.
“None of which can be done outside of work hours. ” – This REALLY gets my goat! And I have EVERY Friday afternoon off. But guess what?! That’s right. No clinics I want are on on Friday afternoons. (OK, except for the physio, which is, I expect, due to the fact that ‘normal’ people with working pancreases need their services so they HAVE to be available in the evenings too).
I am currently lucky enough to be a mere apprentice, so no-one really cares if I have to take a half or even whole day off to see the doctor (I don’t drive, and start at 07:30 so the ‘early’ morning appts are halfway through a shift for me!), which is nice. But I will qualify one day (can’t wait!) and then I will be expected to actually be at work more often than not, and have to book toil or proper half day holidays, etc to account for the time off.
Of course, the other issue for me is simply, remembering the appointments – I missed my retinopathy screening on Monday through sheer forgetfulness…
@Mike- I am always keen to see my ‘a1cs, as I am sorta competitive and like to beat my previous bests 😉 sadly, at the moment I suspect it may be my previous ‘best’ high :/
I can ring my DSN at any time, should I want to (in theory, even at home, over the weekends, although she does tend to forget to take her mobile home with her…). But I have to attend the pump clinic (as opposed to the ordinary clinic) which is only held once a month on Wednesday afternoons. And I work on Wednesday afternoons, which is a shame…(I used to go to the Monday clinic, which was fine, as I dont work Mondays, then I got a pump.) So I take the afternoons off. Its a bummer. But its not one I honestly feel too strongly about. (I’m lucky in that I get my eyes done at the Monday afternoon clinic, so no worries there, and they do my feet at the pump clinic, so that’s another one off the list.)
Playing devil’s advocate here – would you pay more so that drs and nurses (who also have lives outside of work) would work longer hours/weekends just so we dont have to take a bit of time off work?
*Trying hard not to imagine Mike typing in invisible PJs*
I am also very flexible as I work from home. You tend to do that if you are a poet. BUT I live in a village with a terrible bus service. My hospital is in the city. OH works in the city and can drive me in and I can usually make my appointment for early (9 – 9.30) and get away in time to get the only bus back. But sometimes, if they send me to get bloods done or something, I can’t and have to spend the whole day in doing not much. This is now much harder since I got the dog as obviously I can’t leave her at home for that many hours, and can’t bring her home on the bus either, as it takes almost 2 hours going round every village in the south of England before getting to mine.
So I just have to hope OH is not working TOO hard and can get me in and get me home in his lunch hour. Not ideal.
I have never been sent to see a chiropodist or whoever you are all getting to see to your feet. Not in all 40 years of being diabetic. But do have eye screenings at the local surgery 5 minutes walk away in the village. But I do always forget to go and have to be recalled the next time it’s here. It takes 3 goes on average. Short term memory shot – hypos I think. I can know I have an appointment up until half an hour before and completely forget to go to it. I was on the list for the last flu vaccine, I phoned up, they said one left, come in twenty minutes, I said great, no time to forget – then forgot.
I’ve never been referred to a diabetic clinic at the hospital, and judging by remarks on here, that’s no bad thing! This means that nearly all my consultations are at my local health centre, just a ten minute buggy ride down the village. The only appointment I have outside the village is for my eye screening, which is done at my local ophthalmologist’s, though if I desperately want to see the podiatrist I can get seen quickly at the hospital in town, or in a few months time in the village.
@lizz, I cover the problem of remembering appointments by using a calendar on my computer, it works really well, assuming I put the appointments on in the first place, so I now enter them immediately they’re made. When the time arrives, my computer tells me by shaking the desk with the first bar of New York Groove, it will even wake me up! I usually set the alarm to precede the appointment by 30 minutes, which gives me plenty of time to get ready and go.
The software I use is Mozilla Thunderbird, which is an email program and the calendar is integrated with it. The beauty of it is that I can set multiple alarms for one event, for instance, if I did need to go to the hospital I could set an alarm a week before to order the transport, the day before to remind me, and half an hour before to tell me to get my arse into gear. It’s almost as efficient as a wife! 🙂
@teloz: You’ll be obliged to change your surname to Mozbourne 😀
I art from home (without? Emperor’s pyjamas :)); usually I visit the diabetes clinic (toe tickle by doctor included) at a hospital about 207km northwards of my abode every 3 months, and the ophthalmologist once a year in November – lovely (visit to family friend) & horrid (visit to mall) metropolitan holidays all…
@teloz: I’d prefer a wife. I’ve often thought one would be handy. But I might try your software, as it would be extremely handy, thanks for that tip! But without the music. Poetry perhaps. I don’t like music.
@Annette – Would I pay more? Before I start shelling out cash, I’d like us to look at getting best value out of what we already spend. Do not attends are a huge and costly problem, wasting hours of clinician time – my hosptial has an automated system that calls you the day before the appointment to remind you, which is great and is good for reminding you about appointments that were booked almost a year ago. But that doesn’t solve the people who either can’t turn up because of work, or are completely disengaged from the system. That’s a huge waste.
They only value I get from my clinic is my blood test results. We could do that by email or phone and save everyone’s time. In business speak, this is multi channel delivery – look at banks, I choose whether I deal with my bank via the web, the phone or face to face. We should be able to assess the needs of people with chronic conditions and work out how best to work with them. Then the cost of supporting me is reduced, I can spend my time on the useful stuff like checking eyes and feet which I can’t do myself. And they can decicate more time to helping people who need more support than they’re getting.
Or, not that radically because plenty of places already do it, why not combine all the services and have a one stop shop so I make the effort once to see all the aspects of my diabetes care team. Look at WeightWatchers, in my mind they provide low cost, basic private healthcare (if we all ate a bit less and did some more excercise we’d all be a bit healthier). Talk to people who’d been to their meetings and they tell you they get some education, some socialising and a weigh in all at once. Plus the sessions are held when people are able to attend, because they’re a business.
Those are a few simple things that don’t have to be costly, but could increase the value and impact of the care that’s delivered and cut the cost to the economy of having how many working hours wasted with people sitting in waiting rooms.
I will now step down from my soapbox, I feel quite exhausted after that rant 😉
@alison I think you’ve hit the core of the problem there: “because they’re a business”. The NHS isnt a business, wasnt set up as a business, and no matter how much tinkering goes on, will never be a business. It does not run under a business model, and would have to be redesigned from the ground up in order to do so. And that just isnt going to happen.
Experience tells me that if we get ‘out-of-hours’ care, we lose some ‘in-hours’ care. My GP has 2 late night surgeries, to allow for the working populace to go to the GP, and you are specifically asked if you can go at another time to keep those slots free for those who cant. Very laudable. But that means they are shut on one full afternoon (Thurs) and early doors on another (Fri) – which is a bugger if you need an urgent prescription filling before the weekend, especially as it takes 48 hours to fill a prescription, and I cant get them filled elsewhere as its a rural practice. So by having non-working hours care, I have to think a week ahead of myself for repeats. I have enough to think about as it is…
You’re absolutely bang on the money @Alison, you too @Annette. On the other hand, I’m beginning to feel I’m privileged to live where I do, because that’s more or less how the system works for me. I only see a doctor or my DSN when I actually need to have to have physical contact, otherwise I talk to them via email, and get all my results by email too. As I’m sure I’ve mentioned before, (probably ad nauseum) I can make all my appointments, and order repeat prescriptions, via EMIS Access, or email in the case of an appointment with my DSN. For me to try and access out of hours care, it generally has to be something bad enough to warrant me calling an ambulance. If I need antibiotics for a chest infection, I can usually talk to a doctor by phone to get a script. All of this, I hope, saves my practice a bit of money.
I have missed appointments in the past, but it makes me very angry with myself if I do. If I have a date and time foisted on me by a hospital, I will always try and rearrange it if it will be difficult for me to keep. Sadly, there’s no real way of penalising the true time wasters, and some of the serial offenders just don’t give a s**t! Maybe publishing their names and their unnecessary cost to the NHS would work, three missed appointments and their name is on the Wall of Shame!
As an aside I have a theory about publishing Did Not Attends. Our clinic has a big sign saying “196 patients didn’t attend in December. Bad!” I think publishing the numbers that didn’t attend normalises the issue – “ah, if I don’t attend then it’s okay because I’m not the only one”.
What they should do is put a big sign saying “98.7% of our patients attended perfectly well, so what’s your excuse not to?”, which normalises attending.
Annette, I take your point that the NHS isn’t a business, but that doesn’t mean it can’t selectively take some learning from the private sector. The aim of a business is to make profit, the most effective way to make a profit is to deliver your services as effeciently as you can, thereby keeping your costs down. The NHS will never have enough money, therefore the more cost effective it makes its services (or the more I can drive it to become more cost effective because I accept that there isn’t a great motivator within the organisation to do it itself), the more services it can deliver. There’s no harm in looking at how others do it and taking some best practice onboard.
The culture is a huge issue though when it comes to trying new ways of doing things. When I fought for my pump and CGM funding I was shocked at the culture of prevarication and apathy that prevailed. I got a real sense that the idea was to avoid making a decision at all costs and simply ignore difficult problems (like me) in the hope that they’d go away. That attitude wasted hours of committee time and management time as they discussed but never decided, requested info they already had and ultimately had to deal with me a lot more than they needed to. I would be sacked if I worked like that. That’s a culture that lacks empowerment and is wasteful. Its tough to change, but a starting point is to look outside their own organisation and see how others work.
Its really easy to bash the NHS and ignore a lot of the pockets of brilliant service that exist. If we could only take that best practice and increase the speed at which we spread it around we could see great improvements. But I think the driver for all of this has to come from the patient – we’re the customer.
@Tim, I think you’re probably right as a first line of attack, but I still think naming and shaming serial offenders would be good practice.
@Alison, I always knew the NHS was going to struggle once the number of managers exceeded the number of beds. The kind of ‘fuzzy management’ they practice means there is rarely anyone who can make a decision, managers are so busy watching their backs for approaching knives, they can’t concentrate on doing what they’re paid to do. Gaia forbid that anyone should have to take responsibility for anything, if you can’t be seen to make a decision you can’t carry the can when the s**t hits the fan! (See! I’m a poet!) Given the circumstances, I’m surprised we get as much from our NHS as we do, I think it’s probably down to the dedication of the front-line troops. Maybe the answer would be to cull upper and middle management and give the ones that are left some real responsibility.
NHS bashing sells newspapers, they never tell you about the millions who have been treated well and successfully.
I know where you’re coming from. I’ve got to take an entire afternoon off work today to go to the eye clinic, and because they put the dilating drops in, it means I can’t use the car or especially the motorbike to nip in and out quickly. Got to rely on Scotrail then wait around for my wife to finish work and run me home again as I can’t drive back from the station. And even if I were able to get back earlier, my eyes are shot for about 12 hours and focussing on a computer screen is impossible! Fortunately, my work is fairly flexible but deadlines and targets don’t budge even if your pancreas is taking priority.
It’s like running a car – the tax, MoT and service always seem to co-incide. . .
Hmmm… @Donald, different drops can be used to minimise the effect of duration of dilation. (I think that might be a tongue-twister!) The NHS of course use the cheapest. I wonder if you would be able to contact them in advance, explain your problem, and get them to use something else? I’m pretty sure you have the right to ask for a different medicine if the one used does not suit you.
My optometrist must have used something different, I’m usually back to normal within a couple of hours. Have you noticed though, it may have been cloudy and rainy for weeks, but the day you get your eyes done the sun shines like you’re in the Sahara Desert? 🙂
Yes – my drops tend to wear off after an hour or two. I usually try to remember to take my sunglasses with me – but if I don’t, my optometrist will usually try to sell me a pair (as I burbled on about here: http://www.shootuporputup.co.uk/2009/04/eye-eye/ )
Oddly, I find that if I dont wear my glasses after drops, I can see fine, but if I wear them as normal (ie all the time) I cant see a thing. But again, only for a couple of hours (although I look slighgly odd, with diffdring pupils, for the rest of the day.)
I find it quite fun to go and buy something, with my pupils widely dilated, and star very hard at the checkout person. Makes them go all uncomfortable.
I once went into M&S and tried to buy something and couldn’t read the labels. As I was peering at one an asistant appeared and asked me if I needed help, I explained and she said they regularly got people in there suffering in the same way and they helped anyone they saw peering at stuff! Lol, M&S is just over the road from the eye hospital in Bristol…
@lizz Aha, a fellow Bristolian? My first eye check with the consultant at the BRI resulted in time free afterwards to wander around the shops in the city centre.. Not realising what I looked like at the time a girl in the shop asked me if I was ok and am I on drugs?? hehe
It was only when I got into the old man’s car did he point out that the eyes were very green.
The last eye exam was done with some super duper optics/cameras that don’t blow bleeding air in your eyes as I’m a big girl when it gets to that part.. Plus they get to stay on record as reference.
They do scare the living daylights out of you with a picture being and using something similar to a flash gun but from 5mm away, so you do come out blinded… 😉
From @alison : ” but a starting point is to look outside their own organisation and see how others work”. From what I’ve read here, I’d suggest they could start by looking inside their own organisation…Postcode lottery, anyone? If Alison’s PCT can fund snazzy HbA1C machines that mean she can get it done in minutes (rather than the hours I’ve had to wait in the past to have it taken in the path lab), if my GP can sort out out-of-hours surgeries for workers, if my diabetic clinic can do it all the necessary tests at one time (feet-tickling, eye-photography, DSN, dietitian and consultant – only falls down if you need to see an opthalmologist as well, cos they dont like talking to the diabetes people, so that has to be done seperately), if Stephen can chose when his appointments are (rather than just having them foisted upon him), if teloz can ask for an HbA1C when he wants them (I can just imagine my DSNs face if I tried that…), if EMIS access can be used by some people (my dad has it at his surgery – and I want it at mine!), if…if…if – if there are good bits within the system, shouldnt they be rolled out across all areas?
Fix what works inefficiently by use of known/accepted current practice – which might free up enough cash to at least start looking at the rest of it…
The culture issue is another matter indeed. I was disgusted when I was fighting for my pump – I live in an area where I could attend either one of 2 hospitals, but I ‘belong’ to the PCT of the one I actually choose to go to. However, due to the idiocies of the Post Office, I have a postcode that indicates I should apply to the other for funding, so that’s what my DSN did. They didnt even acknowledge her application. She tried again. No response. She then checked where I lived (as opposed to where the Post Office says I live), and realised she needed to apply to the other PCT. SHe rang up a colleague who told her that her letters had been looked at, they’d realised she’d applied to the wrong people, and they binned the letters. Twice. Rather than telling her she was in error, they allowed her to waste more time re-applying, which they then had to reconsider (binning, that is), they just let the time (and money) be wasted.
On a lighter note, because ‘my’ PCT knows that my diabetes clinics dont ask for pumps for anyone who isnt fully ready for them and who doesnt need them, I got the go ahead within days from them…
An update here…I just happened (here’s coincidence for you) to be going to get my eyes photographed this afternoon, so I timed how long it took to regain full eyesight. Drops in at 2.05 pm, able to see well enough to leave the clinic without banging into things by 2.35pm (able to read/check phone etc without glasses on immediately – but obviously not drive without my glasses on – hubby took his laptop and worked ‘from carpark’ for an hour…) Fully recovered now, 4.15pm. (Pupils still dilated, but not affecting vision.)
Maybe some people are more/less sensitive to the drops?
Or we’re just exaggerating to get sympathy . . . I spent an hour browsing CDs with dilated eyes and it was a struggle. Thankfully I didn’t buy anything or I might have ended up with Peter André’s greatest hits by mistake, which would have been extremely upsetting as I’ve got plenty of blank CDs . . . 🙂
@Annette – My eye consultant/surgeon told me the reason why some people are more/less sensitive to the drops… eye colour, I kid you not.
People with blue, blue grey eyes are more sensitive to the drops than those with brown eyes, with green eyed people being somewhere in between. Apparently blue eyes react much quicker and the effect lasts much longer than on darker eye colours.
I had a bit of a moan about how my vision gets much worse after I’ve left the hospital following an appointment (as I make my way home in sunglasses even on the darkest, most miserable of days and can’t even see the number on the front of the bus let alone be able to drive!) and lastest for at least 8 hours.
After my little moan my lovely consultant fella told me to tell the nurse before she puts the drops in – they usually use 2 different types – that being blue eyed, I only need the first ones. Bingo! Now horrible blurriness only lasts about 4 hours…. though obviously I still need a full day off work 😉 (actually I do tend to check emails from home on said days)
While my employers are frankly brilliant about all my time off for pancreas related appointments it does really annoy me that I’m seemingly at the beck and call off the hosp appointments system. I once tried to rearrange an eye clinic appointment because I was going on holiday (how very dare I!) and the ‘next available slot’ was a further 3 months after!
My clinics are all on different days and not at all flexible. Eye clinic only on Tues morning, Pump clinic only on Weds mornings, podiatrist/chiropodist on a Thursday sometime between 10 and 4 and if I need to speak to my DSN I have to leave a voicemail before 1pm and they’ll call back between 2 and 4. If I happen to have an emergency after 1pm I have to wait for a response till after 2pm the next day and if it’s a Friday, wait till Monday after 2pm – by which time I could well have been admitted!
I have brown and I’m blinded! My son who has the same colour eyes had to be fitted with sunglasses as a baby as he found sunshine too bright. The optician said his eyes were letting in a lot of light, were quite light brown and something about his retinas. Can’t remember now…
Re eye drops before the retinopathy test – any time I have had these I suffer for hours, and as mentioned find the whole world is painted the sort of brilliant white that soap powder adverts love to boast of achieving.
On attending my last test I told the lady who was doing it that I had been unable to function for several hours after the last test and she said that as I have big pupils and very blue eyes she would be able to do the photo without dropping me (yes, that’s exactly how she phrased it, which did nothing to inspire confidence but did conjure up images of eye care professionals blithely dropping diabetics off bridges).
Apparently the darker your eyes the more likely that you will need drops before the photos can be taken, and that, in particular, people who are afro-caribbean always need the strongest drops as they have pupils that are past brown and actually appear black (no, thats not racist, its a real physical distinction between races).
Yes yes yes! I despise the way my local hospital blithely tells me I have to attend their eye clinic at 2.30pm for a 15 minute eye appointment on some random day. The Royal is a good half hour away from my office by taxi and so I have to take several hours out of my day to attend. For some reason said eye clinic can’t be done at the same time as my pump clinic – which I also have to take time out for. None of it can be rearranged to something convenient, or – indeed – rearranged at all.
Contrary to popular belief I am usually quite busy acting on behalf of large corporate clients in international intellectual property disputes (I’m not making this up, I really do do this); it’s actually quite a bother to drop everything, take hours out of my (and my company’s) day to trail up to the Royal for a 15 minute appointment.
You might be getting the impression this really gets on my wick. If so, you’d be right.
Wow, I hit a nerve there didn’t I? This blog is going to get pretty dull if we keep violently agreeing with each other 😉
He he! I think you’re wrong about a great many things dear co-writer, but on this occasion you have indeed struck a nerve! Crappy appointments make me very eggy.
Work to live guys, not live to work!
If I have an appointment (and I’ve been batting at least one a fortnight for the past 5 months, plus wife’s antenatal stuff) then I bloody well go to it and hang the job! You can always make the time back later 🙂
@tim – how does two 30 min taxi rides + 15 mins appointment = several hours? 😉 It’s just a lunch break that is!
@alison – with so many appointments recently, I’ve taken the rather novel approach of booking them at 8:30 or 4:30. All I need to do then is start a little early, or finish a little early. Simplez!
Well someone had to break up the love in and disagree with you didn’t they 😛
@stephen It’s typical that the legal eagles are the ones that are moaning here 😉
@tim & @alison I do actually agree with what you have both said and also think that “trying” to schedule appts. for either early morning/later afternoon to minimise the distress involved.
Saying that, I couldn’t care less seeing as I can work in my PJ’s (actually I don’t own any, but that is beside the point) from home so the work around more straightforward for me.
One final thing! What happens if your not at the office for a morning or afternoon? @tim Don’t answer that 😉 but will the business seriously go into administration whilst we are all out having tickled feet luncheons with our diabetes teams… 🙂
I work from home so I do have a lot of flexibility and if I have an important appointment that needs dealing with I bloody well go to it too.
But as a customer I would prefer to have a choice in when I access routine services. And there are plenty of people who don’t have that level of flexibility, which means they’re at a huge disadvantage in the workplace simply because of a dodgy pancreas and a system that doesn’t acknowledge that not every diabetic is retired. I also travel a lot so there are huge chunks of time when I’m just not near home to go to appointments.
I know the world will continue without me and it does frequently, but I like my job and I don’t like having to take time out for appointments that could just as easilly take place at night or weekends.
@alison I hear ya loud n clear. Travelling is, as you say a major problem and as you mentioned, there are countless others that do not have either the time or the flexibility to attend such appts,
I’m pretty lucky here, the Hospital is a flagship for Microsoft and utilise technology to fullest extent which allows the consultant to make further appts. there and then affording more flexibility for me/us.
Other appts, well it is case of trying to attend if you can.. Although we have the facility to book appts, amend them as well as cancel appts..
Some would call me a gentleman of leisure, some would call me a drain on society, a sponger and ne’er-do-well scrounging on benefits; ya pays ya money and takes ya choice! What this means though, is that I have no work/health conflict, I can dedicate my life to my insulin resistance. The truth is, I would much rather be trying to fit my appointments around a job. I don’t want my feet to be turnips; I’d like to be able to stand and bag my groceries at the checkout without pain; I’d like to stride around the countryside without getting breathless in the first ten metres; I don’t want to wake after two hours sleep feeling as though my toenails are being peeled back.
Admittedly, some of this is self inflicted like the COPD caused by smoking, but the bad back and obesity are down to long years of driving lorries (before sprung seats were even thought of), and humping tonnes of stuff on and off them, plus a congenital spinal defect. Combine that with an horrendous diet and you have a recipe for ill health; to coin an Americanism, life sucks!
I know that the life/work balance is difficult, but revel in the challenge! Soon enough that choice may be taken away from you! Whatever else you do though, you need to be the best surrogate pancreas you can be.
Good to hear your toenails are doing well Tel.. 🙂
Open question to the panel. Do you think you would perhaps make more of an effort to attend these ancillary appointments, if for arguments sake you feel control is better/worse than previous visits.
Again, I’m atypical @mikeinspain I think I probably have more autonomous control than most diabetics, T1 or T2. Basically, I can call on my DSN ‘at need’. For instance, if I’m going through a period of denial I can make regular appointments weekly, fortnightly, or monthly in order to get my arse kicked and keep me in line.
Normally I have an HbA1c every three months, but I could get additional tests if I thought I needed them. I’m currently battling a rise in my HbA1c from 7.3 to 8.7 (June to November last year), so I’ll be making an appointment shortly to see if I’m winning! The short answer though is yes! I’m much keener to keep appointments if I don’t think my control has been good.
“None of which can be done outside of work hours. ” – This REALLY gets my goat! And I have EVERY Friday afternoon off. But guess what?! That’s right. No clinics I want are on on Friday afternoons. (OK, except for the physio, which is, I expect, due to the fact that ‘normal’ people with working pancreases need their services so they HAVE to be available in the evenings too).
I am currently lucky enough to be a mere apprentice, so no-one really cares if I have to take a half or even whole day off to see the doctor (I don’t drive, and start at 07:30 so the ‘early’ morning appts are halfway through a shift for me!), which is nice. But I will qualify one day (can’t wait!) and then I will be expected to actually be at work more often than not, and have to book toil or proper half day holidays, etc to account for the time off.
Of course, the other issue for me is simply, remembering the appointments – I missed my retinopathy screening on Monday through sheer forgetfulness…
@Mike- I am always keen to see my ‘a1cs, as I am sorta competitive and like to beat my previous bests 😉 sadly, at the moment I suspect it may be my previous ‘best’ high :/
I can ring my DSN at any time, should I want to (in theory, even at home, over the weekends, although she does tend to forget to take her mobile home with her…). But I have to attend the pump clinic (as opposed to the ordinary clinic) which is only held once a month on Wednesday afternoons. And I work on Wednesday afternoons, which is a shame…(I used to go to the Monday clinic, which was fine, as I dont work Mondays, then I got a pump.) So I take the afternoons off. Its a bummer. But its not one I honestly feel too strongly about. (I’m lucky in that I get my eyes done at the Monday afternoon clinic, so no worries there, and they do my feet at the pump clinic, so that’s another one off the list.)
Playing devil’s advocate here – would you pay more so that drs and nurses (who also have lives outside of work) would work longer hours/weekends just so we dont have to take a bit of time off work?
*Trying hard not to imagine Mike typing in invisible PJs*
I am also very flexible as I work from home. You tend to do that if you are a poet. BUT I live in a village with a terrible bus service. My hospital is in the city. OH works in the city and can drive me in and I can usually make my appointment for early (9 – 9.30) and get away in time to get the only bus back. But sometimes, if they send me to get bloods done or something, I can’t and have to spend the whole day in doing not much. This is now much harder since I got the dog as obviously I can’t leave her at home for that many hours, and can’t bring her home on the bus either, as it takes almost 2 hours going round every village in the south of England before getting to mine.
So I just have to hope OH is not working TOO hard and can get me in and get me home in his lunch hour. Not ideal.
I have never been sent to see a chiropodist or whoever you are all getting to see to your feet. Not in all 40 years of being diabetic. But do have eye screenings at the local surgery 5 minutes walk away in the village. But I do always forget to go and have to be recalled the next time it’s here. It takes 3 goes on average. Short term memory shot – hypos I think. I can know I have an appointment up until half an hour before and completely forget to go to it. I was on the list for the last flu vaccine, I phoned up, they said one left, come in twenty minutes, I said great, no time to forget – then forgot.
I’ve never been referred to a diabetic clinic at the hospital, and judging by remarks on here, that’s no bad thing! This means that nearly all my consultations are at my local health centre, just a ten minute buggy ride down the village. The only appointment I have outside the village is for my eye screening, which is done at my local ophthalmologist’s, though if I desperately want to see the podiatrist I can get seen quickly at the hospital in town, or in a few months time in the village.
@lizz, I cover the problem of remembering appointments by using a calendar on my computer, it works really well, assuming I put the appointments on in the first place, so I now enter them immediately they’re made. When the time arrives, my computer tells me by shaking the desk with the first bar of New York Groove, it will even wake me up! I usually set the alarm to precede the appointment by 30 minutes, which gives me plenty of time to get ready and go.
The software I use is Mozilla Thunderbird, which is an email program and the calendar is integrated with it. The beauty of it is that I can set multiple alarms for one event, for instance, if I did need to go to the hospital I could set an alarm a week before to order the transport, the day before to remind me, and half an hour before to tell me to get my arse into gear. It’s almost as efficient as a wife! 🙂
@teloz: You’ll be obliged to change your surname to Mozbourne 😀
I art from home (without? Emperor’s pyjamas :)); usually I visit the diabetes clinic (toe tickle by doctor included) at a hospital about 207km northwards of my abode every 3 months, and the ophthalmologist once a year in November – lovely (visit to family friend) & horrid (visit to mall) metropolitan holidays all…
@teloz: I’d prefer a wife. I’ve often thought one would be handy. But I might try your software, as it would be extremely handy, thanks for that tip! But without the music. Poetry perhaps. I don’t like music.
@Annette – Would I pay more? Before I start shelling out cash, I’d like us to look at getting best value out of what we already spend. Do not attends are a huge and costly problem, wasting hours of clinician time – my hosptial has an automated system that calls you the day before the appointment to remind you, which is great and is good for reminding you about appointments that were booked almost a year ago. But that doesn’t solve the people who either can’t turn up because of work, or are completely disengaged from the system. That’s a huge waste.
They only value I get from my clinic is my blood test results. We could do that by email or phone and save everyone’s time. In business speak, this is multi channel delivery – look at banks, I choose whether I deal with my bank via the web, the phone or face to face. We should be able to assess the needs of people with chronic conditions and work out how best to work with them. Then the cost of supporting me is reduced, I can spend my time on the useful stuff like checking eyes and feet which I can’t do myself. And they can decicate more time to helping people who need more support than they’re getting.
Or, not that radically because plenty of places already do it, why not combine all the services and have a one stop shop so I make the effort once to see all the aspects of my diabetes care team. Look at WeightWatchers, in my mind they provide low cost, basic private healthcare (if we all ate a bit less and did some more excercise we’d all be a bit healthier). Talk to people who’d been to their meetings and they tell you they get some education, some socialising and a weigh in all at once. Plus the sessions are held when people are able to attend, because they’re a business.
Those are a few simple things that don’t have to be costly, but could increase the value and impact of the care that’s delivered and cut the cost to the economy of having how many working hours wasted with people sitting in waiting rooms.
I will now step down from my soapbox, I feel quite exhausted after that rant 😉
@alison I think you’ve hit the core of the problem there: “because they’re a business”. The NHS isnt a business, wasnt set up as a business, and no matter how much tinkering goes on, will never be a business. It does not run under a business model, and would have to be redesigned from the ground up in order to do so. And that just isnt going to happen.
Experience tells me that if we get ‘out-of-hours’ care, we lose some ‘in-hours’ care. My GP has 2 late night surgeries, to allow for the working populace to go to the GP, and you are specifically asked if you can go at another time to keep those slots free for those who cant. Very laudable. But that means they are shut on one full afternoon (Thurs) and early doors on another (Fri) – which is a bugger if you need an urgent prescription filling before the weekend, especially as it takes 48 hours to fill a prescription, and I cant get them filled elsewhere as its a rural practice. So by having non-working hours care, I have to think a week ahead of myself for repeats. I have enough to think about as it is…
You’re absolutely bang on the money @Alison, you too @Annette. On the other hand, I’m beginning to feel I’m privileged to live where I do, because that’s more or less how the system works for me. I only see a doctor or my DSN when I actually need to have to have physical contact, otherwise I talk to them via email, and get all my results by email too. As I’m sure I’ve mentioned before, (probably ad nauseum) I can make all my appointments, and order repeat prescriptions, via EMIS Access, or email in the case of an appointment with my DSN. For me to try and access out of hours care, it generally has to be something bad enough to warrant me calling an ambulance. If I need antibiotics for a chest infection, I can usually talk to a doctor by phone to get a script. All of this, I hope, saves my practice a bit of money.
I have missed appointments in the past, but it makes me very angry with myself if I do. If I have a date and time foisted on me by a hospital, I will always try and rearrange it if it will be difficult for me to keep. Sadly, there’s no real way of penalising the true time wasters, and some of the serial offenders just don’t give a s**t! Maybe publishing their names and their unnecessary cost to the NHS would work, three missed appointments and their name is on the Wall of Shame!
As an aside I have a theory about publishing Did Not Attends. Our clinic has a big sign saying “196 patients didn’t attend in December. Bad!” I think publishing the numbers that didn’t attend normalises the issue – “ah, if I don’t attend then it’s okay because I’m not the only one”.
What they should do is put a big sign saying “98.7% of our patients attended perfectly well, so what’s your excuse not to?”, which normalises attending.
Like I said, just an aside… 🙂
This is great, a proper debate! 🙂
Annette, I take your point that the NHS isn’t a business, but that doesn’t mean it can’t selectively take some learning from the private sector. The aim of a business is to make profit, the most effective way to make a profit is to deliver your services as effeciently as you can, thereby keeping your costs down. The NHS will never have enough money, therefore the more cost effective it makes its services (or the more I can drive it to become more cost effective because I accept that there isn’t a great motivator within the organisation to do it itself), the more services it can deliver. There’s no harm in looking at how others do it and taking some best practice onboard.
The culture is a huge issue though when it comes to trying new ways of doing things. When I fought for my pump and CGM funding I was shocked at the culture of prevarication and apathy that prevailed. I got a real sense that the idea was to avoid making a decision at all costs and simply ignore difficult problems (like me) in the hope that they’d go away. That attitude wasted hours of committee time and management time as they discussed but never decided, requested info they already had and ultimately had to deal with me a lot more than they needed to. I would be sacked if I worked like that. That’s a culture that lacks empowerment and is wasteful. Its tough to change, but a starting point is to look outside their own organisation and see how others work.
Its really easy to bash the NHS and ignore a lot of the pockets of brilliant service that exist. If we could only take that best practice and increase the speed at which we spread it around we could see great improvements. But I think the driver for all of this has to come from the patient – we’re the customer.
[Descends from soapbox once more]
Proper debate? Damn, went to the wrong forum again! Anyone seen shoot up? 😉
@Tim, I think you’re probably right as a first line of attack, but I still think naming and shaming serial offenders would be good practice.
@Alison, I always knew the NHS was going to struggle once the number of managers exceeded the number of beds. The kind of ‘fuzzy management’ they practice means there is rarely anyone who can make a decision, managers are so busy watching their backs for approaching knives, they can’t concentrate on doing what they’re paid to do. Gaia forbid that anyone should have to take responsibility for anything, if you can’t be seen to make a decision you can’t carry the can when the s**t hits the fan! (See! I’m a poet!) Given the circumstances, I’m surprised we get as much from our NHS as we do, I think it’s probably down to the dedication of the front-line troops. Maybe the answer would be to cull upper and middle management and give the ones that are left some real responsibility.
NHS bashing sells newspapers, they never tell you about the millions who have been treated well and successfully.
I know where you’re coming from. I’ve got to take an entire afternoon off work today to go to the eye clinic, and because they put the dilating drops in, it means I can’t use the car or especially the motorbike to nip in and out quickly. Got to rely on Scotrail then wait around for my wife to finish work and run me home again as I can’t drive back from the station. And even if I were able to get back earlier, my eyes are shot for about 12 hours and focussing on a computer screen is impossible! Fortunately, my work is fairly flexible but deadlines and targets don’t budge even if your pancreas is taking priority.
It’s like running a car – the tax, MoT and service always seem to co-incide. . .
Hmmm… @Donald, different drops can be used to minimise the effect of duration of dilation. (I think that might be a tongue-twister!) The NHS of course use the cheapest. I wonder if you would be able to contact them in advance, explain your problem, and get them to use something else? I’m pretty sure you have the right to ask for a different medicine if the one used does not suit you.
My optometrist must have used something different, I’m usually back to normal within a couple of hours. Have you noticed though, it may have been cloudy and rainy for weeks, but the day you get your eyes done the sun shines like you’re in the Sahara Desert? 🙂
… and for some reason someone has painted everything white, even the pavement!
Yes – my drops tend to wear off after an hour or two. I usually try to remember to take my sunglasses with me – but if I don’t, my optometrist will usually try to sell me a pair (as I burbled on about here: http://www.shootuporputup.co.uk/2009/04/eye-eye/ )
Couple of hours here too, unless it’s a surgery day then it’s probably closer to five as there’s about four different sets of drops that go in.
Oddly, I find that if I dont wear my glasses after drops, I can see fine, but if I wear them as normal (ie all the time) I cant see a thing. But again, only for a couple of hours (although I look slighgly odd, with diffdring pupils, for the rest of the day.)
I find it quite fun to go and buy something, with my pupils widely dilated, and star very hard at the checkout person. Makes them go all uncomfortable.
I once went into M&S and tried to buy something and couldn’t read the labels. As I was peering at one an asistant appeared and asked me if I needed help, I explained and she said they regularly got people in there suffering in the same way and they helped anyone they saw peering at stuff! Lol, M&S is just over the road from the eye hospital in Bristol…
@lizz Aha, a fellow Bristolian? My first eye check with the consultant at the BRI resulted in time free afterwards to wander around the shops in the city centre.. Not realising what I looked like at the time a girl in the shop asked me if I was ok and am I on drugs?? hehe
It was only when I got into the old man’s car did he point out that the eyes were very green.
The last eye exam was done with some super duper optics/cameras that don’t blow bleeding air in your eyes as I’m a big girl when it gets to that part.. Plus they get to stay on record as reference.
They do scare the living daylights out of you with a picture being and using something similar to a flash gun but from 5mm away, so you do come out blinded… 😉
From @alison : ” but a starting point is to look outside their own organisation and see how others work”. From what I’ve read here, I’d suggest they could start by looking inside their own organisation…Postcode lottery, anyone? If Alison’s PCT can fund snazzy HbA1C machines that mean she can get it done in minutes (rather than the hours I’ve had to wait in the past to have it taken in the path lab), if my GP can sort out out-of-hours surgeries for workers, if my diabetic clinic can do it all the necessary tests at one time (feet-tickling, eye-photography, DSN, dietitian and consultant – only falls down if you need to see an opthalmologist as well, cos they dont like talking to the diabetes people, so that has to be done seperately), if Stephen can chose when his appointments are (rather than just having them foisted upon him), if teloz can ask for an HbA1C when he wants them (I can just imagine my DSNs face if I tried that…), if EMIS access can be used by some people (my dad has it at his surgery – and I want it at mine!), if…if…if – if there are good bits within the system, shouldnt they be rolled out across all areas?
Fix what works inefficiently by use of known/accepted current practice – which might free up enough cash to at least start looking at the rest of it…
The culture issue is another matter indeed. I was disgusted when I was fighting for my pump – I live in an area where I could attend either one of 2 hospitals, but I ‘belong’ to the PCT of the one I actually choose to go to. However, due to the idiocies of the Post Office, I have a postcode that indicates I should apply to the other for funding, so that’s what my DSN did. They didnt even acknowledge her application. She tried again. No response. She then checked where I lived (as opposed to where the Post Office says I live), and realised she needed to apply to the other PCT. SHe rang up a colleague who told her that her letters had been looked at, they’d realised she’d applied to the wrong people, and they binned the letters. Twice. Rather than telling her she was in error, they allowed her to waste more time re-applying, which they then had to reconsider (binning, that is), they just let the time (and money) be wasted.
On a lighter note, because ‘my’ PCT knows that my diabetes clinics dont ask for pumps for anyone who isnt fully ready for them and who doesnt need them, I got the go ahead within days from them…
/rant.
An update here…I just happened (here’s coincidence for you) to be going to get my eyes photographed this afternoon, so I timed how long it took to regain full eyesight. Drops in at 2.05 pm, able to see well enough to leave the clinic without banging into things by 2.35pm (able to read/check phone etc without glasses on immediately – but obviously not drive without my glasses on – hubby took his laptop and worked ‘from carpark’ for an hour…) Fully recovered now, 4.15pm. (Pupils still dilated, but not affecting vision.)
Maybe some people are more/less sensitive to the drops?
Or we’re just exaggerating to get sympathy . . . I spent an hour browsing CDs with dilated eyes and it was a struggle. Thankfully I didn’t buy anything or I might have ended up with Peter André’s greatest hits by mistake, which would have been extremely upsetting as I’ve got plenty of blank CDs . . . 🙂
@Annette – My eye consultant/surgeon told me the reason why some people are more/less sensitive to the drops… eye colour, I kid you not.
People with blue, blue grey eyes are more sensitive to the drops than those with brown eyes, with green eyed people being somewhere in between. Apparently blue eyes react much quicker and the effect lasts much longer than on darker eye colours.
I had a bit of a moan about how my vision gets much worse after I’ve left the hospital following an appointment (as I make my way home in sunglasses even on the darkest, most miserable of days and can’t even see the number on the front of the bus let alone be able to drive!) and lastest for at least 8 hours.
After my little moan my lovely consultant fella told me to tell the nurse before she puts the drops in – they usually use 2 different types – that being blue eyed, I only need the first ones. Bingo! Now horrible blurriness only lasts about 4 hours…. though obviously I still need a full day off work 😉 (actually I do tend to check emails from home on said days)
While my employers are frankly brilliant about all my time off for pancreas related appointments it does really annoy me that I’m seemingly at the beck and call off the hosp appointments system. I once tried to rearrange an eye clinic appointment because I was going on holiday (how very dare I!) and the ‘next available slot’ was a further 3 months after!
My clinics are all on different days and not at all flexible. Eye clinic only on Tues morning, Pump clinic only on Weds mornings, podiatrist/chiropodist on a Thursday sometime between 10 and 4 and if I need to speak to my DSN I have to leave a voicemail before 1pm and they’ll call back between 2 and 4. If I happen to have an emergency after 1pm I have to wait for a response till after 2pm the next day and if it’s a Friday, wait till Monday after 2pm – by which time I could well have been admitted!
But I have _very_ blue eyes. And lie I said, I was fine after 2 hours. Normal? Did someone mention normality?
I have brown and I’m blinded! My son who has the same colour eyes had to be fitted with sunglasses as a baby as he found sunshine too bright. The optician said his eyes were letting in a lot of light, were quite light brown and something about his retinas. Can’t remember now…
Oh well,… and there was me actually believing a medical professional – I should so have learnt by now!…
Re eye drops before the retinopathy test – any time I have had these I suffer for hours, and as mentioned find the whole world is painted the sort of brilliant white that soap powder adverts love to boast of achieving.
On attending my last test I told the lady who was doing it that I had been unable to function for several hours after the last test and she said that as I have big pupils and very blue eyes she would be able to do the photo without dropping me (yes, that’s exactly how she phrased it, which did nothing to inspire confidence but did conjure up images of eye care professionals blithely dropping diabetics off bridges).
Apparently the darker your eyes the more likely that you will need drops before the photos can be taken, and that, in particular, people who are afro-caribbean always need the strongest drops as they have pupils that are past brown and actually appear black (no, thats not racist, its a real physical distinction between races).
Result ! No drops for yours truly yay hay !