Shoot Up or Put Up

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by Alison

Eye spy a gap in my care

30 January, 2012 in check ups, Living with diabetes

A photo of an eye, if no one else will share them, ShootUp will

Last week I performed my civic duty of attending the hospital diabetic eye clinic in order to reduce the average age of attendees by at least 30 years. There was also a bit of faffing round with my eyes which left me gobsmacked at quite how disjointed diabetes care can be.

My local PCT have a gem of a diabetic eye screening programme. It’s really good. And I’ve told them so. I am harassed by letter once a year to make an appointment with my choice of local optician from an approved list to have my diabetic eye check. Because opticians are businesses they have appointments outside of working hours so I can toddle along for my annual blinding session without having to take time off work.

The optician then does my regular eye test and takes photos of the back of my eye to check for any exploding blood vessels. If no fireworks show up on the photo it is archived and I’m released back into the community for another year. Several years ago a minor eruption was spotted in the far reaches of my eye so I was packed off to the experts at the hospital for them to have a look.

The hospital said it was a tiny blip, nothing to worry about, it was to be expected as I’ve had diabetes since the dark ages and everyone was happy (well not quite, but let’s not go there now).

Last week I was back at the hospital because the latest photos again show some minor fireworks. Following the obligatory let me dilate your pupils until they look like black holes and then shine a very bright light into them until you cry session, the Dr again concluded there was nothing to worry about. Being a nightmare patient I had questions. Were these the same fireworks as last time that are just simmering quietly in the background. Or have they got worse. Or are they brand new explosions on top of the old ones? Would the nice Dr please take me through the images of my eyes over the last few years so I could understand whether overall things were getting better, worse or staying the same.

You’d have thought I’d asked her to eat a live frog whilst dancing naked through A&E. Apparently I don’t need this information, I just need to control my blood sugars. I also need to repair my tongue because I nearly bit it off before I managed a polite response that I have excellent diabetes control, thank you for your concern, but I’d like to understand the long term journey my eyes are taking. Rather than just have a one off meaningless proclamation that everything is fine when there is obviously something there.

Then came the bit that did, for a little while, leave me speechless. The hospital Dr isn’t able to see the images that have been taken by the screening programme. So on the one hand the PCT have more photos of my eyes than I have holiday photos, and on the other the hospital are making clinical decisions about my eyes without the benefit of seeing their full technicoloured history.

I came home and emailed the medical director at the hospital, asking him to have a little think about how we could make diabetic eye care in our area a little more integrated.

I also popped in to see my optician and asked if he could spare a minute to access the image database and talk me through my eye changes over the last 5 years. Following numerous caveats about how he’s not as clever as the hospital Drs and I’m not to take any of this as advice or he’ll be shot, the lovely man did just that. And so I now have the information I wanted in the first place. The initial fireworks have disappeared completely. There are some other fireworks, which are no worse than the original and don’t appear to be getting any worse year on year. Thank you. Now I understand the size and scale of the problem. And I agree, no treatment required. Which means I can focus on trying to introduce primary care to secondary care and getting them to share their toys and play nicely together.

How do you know if you’re getting good diabetes care?

6 July, 2011 in check ups, news

This dog doesn’t often get the chance to chat with others about what diabetes care they receive, so it’s hard to get an independent view of what should be happening and then compare that to your own reality.

This dog fetched himself a copy of the latest National Diabetes Audit and was aghast to discover that two thirds of people with Type 1 don’t get all the annual health checks recommended for those with a dodgy pancreas.

Other interesting/terrifying stats include the fact that only 28% of Type 1′s have an HbA1c of the recommended 7.5% or lower and in children that falls to just 14.5%. This dog wonders whether the target is realistic, we’re not supporting people well enough to play at being their own pancreases or perhaps diabetes is just quite difficult to manage?

Everyone’s second favourite diabetes charity, Diabetes UK, has a leaflet that takes you through the basics of what care you should expect to get if your pancreas is below par.

What care you need varies from person to person, but it’s always handy to know what good looks like so you can ask the right questions if you think you’re being short changed or say nice things if your diabetes team are doing all that’s expected of them.

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by Alison

We don’t do pumps

11 March, 2011 in Kit & equipment, Living with diabetes

This bewildering cry is still heard on occasion in the antiquated backwaters of diabetes care. If you’re dealing with such out-dated, antediluvian attitudes to providing pumps, a little bit of help is at hand. (Don’t get too excited, no one won the lottery and agreed to give everyone a free pump, but it’s a little step in the right direction. )

The diabetes big guns – JDRF, Diabetes UK  and Input have got together with the NHS Technology Adoption Centre to create a guide to help dinosaurs who currently don’t provide pump therapy in their clinics yet have desperate diabetics who meet the NICE criteria and are crying out for a pump.

If your clinic already offers a pump service, but you can’t personally get one, this won’t help. But if your clinic doesn’t offer a pump service at all, this is aimed at getting them moving in the right direction.

The idea is that you can share the guide with your favourite neanderthal clinician and give them a gentle shove towards the age of enlightenment. There’s actually quite a bit of good stuff in there that clinicians and PCTs will find useful around business cases and costing models to get funding to set up a pump service, guidance on how to actually run a decent pump service etc.

As some people may understandably find it slightly difficult to dropkick their reluctant healthcare team into this brave new world, there’s even a nice little letter you can download  and give to your clinician, signed by the big guns, explaining the guide and why they should be interested. A casual, “Hello Dr, I saw this and thought of you” from your side would probably suffice.

The full guide is available here.

Avatar of Alison

by Alison

The professional diabetic

21 January, 2011 in Living with diabetes

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?”