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.
Nicely written Alison, i’ts not just me then!
Ah, that’s a shame, I was hoping that this ridiculous situation was just a local problem, rather than nationwide. Looks like we’re going to need a UK wide “left hand, meet right hand” campaign.
My solution to this problem is simple. I refuse to go to an optician to have my eyes screened. I don’t see the point of going to two different places, and in any case, the hospital retinal unit clearly know more about retinopathy than the optician. It also saves this problem of having things checked at two different places and not being able to transfer records. Similarly, every year my GP clinic sends me a letter telling me I have to attend their diabetes clinic. Every year I phone them up and tell them I’m not going because I go to a diabetes clinic at the hospital. “But all diabetics have to attend our clinic.” “Do you know anything about insulin pumps?” “Oh, you mean a pen.” … I finally tell them I’m not going and to please take me off the list. They shut up for a year and then send me another letter the following year.
My prefered solution is the opposite – the eye check I get at the opticians is far more thorough than the hospital one, more convenient and much quicker because they run to schedule. No problem going to secondary care if there is an issue but I don’t want to be there for general screening. And if I’m sent there, I expect them to be able to access all the records.
As for the GP/hospital clinic debacle – http://www.shootuporputup.co.uk/2010/05/putting-off-the-inevitable/ – I’m with you on the annual battle.
But the problem with that approach is that if/when anything needs to be done about your eyes, you have to go to the hospital anyway. So it’s best to get into the system there as early as you can, so that you have those records.
I disagree, surely they just need to share the data more effectively so that no matter where the photos are taken, they can be accessed. It is cheaper and more convenient to see patients in primary care – it would have been a complete waste of everyone’s time/money for me to be seen at the eye clinic over the last 25 years. Locally the system works in that the opticians are trained to refer if they spot a problem – that’s what they did, but the data side of the system doesn’t work.
I wish I had the option – I dont get my eyes photographed at an optician because only the hospital/retinography van does them. End of. No question.
I also have the yearly ‘Come to the GP clinic’ thing. Each year I ring up to find out why. Each year they say ‘Because we dont know whats going on with your diabetes.’ I have suggested they maybe should ask my consultant to tell them, but they dont seem to like that idea…
When I moved to a new PCT area a few years back, my notes didn’t show up and my retina photographs have never appeared. Having had 2 vitrectomy operations, both lenses removed and as much laser as is possible I have only got some sight in one eye.
Turning up for my appointment in the new eye unit I was faced with a brand new empty file with my name on. The doctor said to me
“so you haven’t had any problems with retinopathy then” .
Arggghh I’d happily have packed my notes and photos to make sure they moved with me.
Sounds like me, I have no useful sight in one eye and not much more in the other, had all the laser they can do. Only one vitrectomy though 🙂 I also moved PCT 12 years ago and don’t think they managed to ever get my previous notes. At least I had been referred by my consultant so they had the info that I was registered blind!
Looking at this in the round I think what is needed is better referral criteria between primary and secondary care.
My thinking – an eye-hospital doctors’ daily bread is the sick eye; the sicker or rarer the condition the better from an interest viewpoint. A few off-centre fireworks don’t even come close to a sick eye to the doctor. I suspect that the consultation did not add value in any way, and actually wasted the patient’s time and her employer’s time. (Incidentally, it’s the employer’s generation of wealth that ultimately pays for the health service – it’s not free as some in the UK would have you believe.)
On the other hand the opticians’ daily bread is the healthy eye; a few off-centre fireworks are different and of interest, hence his willingness to spend time and competently explain which was all the patient wanted.
My conclusion is that the health service is using the wrong resource for the patient’s needs – a clearly defined written referral criteria from primary to secondary care so that primary care is confident of the hospital expectations would make better use of the patients’ time and health resources.
Of course, hospitals maybe reluctant to provide effective referral criteria as they will lose referrals and the revenue attached to them; but they risk being publicly vilified if they do in this current economic climate.
My PCT appear to have taken a retrograde step. Previously I’ve been reminded of my retinopathy check and have been given a list of opticians to go to. Picked a nice one who would take the time to go through the photos with me, and explain whT were seeing, my last picture showed up some low level volcanic activity 🙁
This year, I was packed off to a GPs surgery – not my GP, just the surgery closest to me and informed that it would take 6 weeks to process the pictures, and I would only be told the results if there were anything of interest.
I can see the virtue in changing the service provider – data sharing should be easier, but we appear to have lost the personal touch, which is a shame.
Welcome to ShootUp @Robyn I’m distressed that the phrase “low level volcanic activity” didn’t come from my own brain, but it shows you are well suited to ShootUp!
Have you given the PCT feedback on the changes? Since I contacted a few people last week, the lead optician and the diabetes network lead are looking into my local issues and how to fix them. Stuff won’t improve unless we tell them what works and what doesn’t.
Your post got me thinking, which is why I replied 🙂 Isn’t that always the case.
My initial response was “wow, that’s good. I no longer have to pick up the phone and find an acceptable time for both me and the optician. the PCT have gone and taken all that stress away from me”. You know how it is, the need to balance work and personal – and nearly always, for me at least, work wins.
You’re right of course, I do need to give some feedback rather than let the PCT assume everything is hunky-dory.
Thanks for the welcome.
Update: My local retinal screening board have agreed to discuss this issue at their April 2012 meeting – I’ll get an update after that.