Shoot Up or Put Up

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by Alison

Dear Alison’s mind

22 February, 2012 in check ups, Living with diabetes

Dear Alison’s Mind

Today Alison went for her annual toe tickle. And she was feeling pretty grumpy. In the waiting room she was acting as a handy generational bridge between a 6 year old with a verruca and an 80 year old who needed help cutting his nails. This is not her ideal way to spend an afternoon. She self-importantly thinks that she had at least a hundred more interesting things she could have been doing. She feels that if the pancreas would pull its weight, she wouldn’t have to attend endless check-ups on various bits of her body.

Her extremities were proclaimed fit and healthy. She thanked the foot man – who she always feel sorry for because the thought of touching other people’s manky feet for a living makes her feel a bit sick – and shuffled off. She harrumphed her way home, muttering miserably about how much she resents having to spend time on this rubbish.

Alison’s mind, this is where you need to step up to the mark. She’s always said the one thing you can control about your diabetes is your attitude to it. And here she is, self-indulgently whinging to herself about nothing much.

You watched smugly when she gave her pancreas and her body a stern talking to in the past. Now it is your turn to be taken in hand. Everything that came out of that foot session was positive. She’s had diabetes for nearly 29 years, nothing has turned green or dropped off yet, she can still feel her feet and they don’t hurt. That’s a great achievement to have come so far with everything still working. She should be celebrating with champagne and a week in the sun somewhere. Or on a more practical level, at least taking the time to acknowledge the good stuff.

So Alison’s mind, I have a simple message for you. Stop bloody whinging and get back to recognising the positives.

Lots of love

Alison’s Mind (motivational division)

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by Alison

More group therapy goodies

14 February, 2012 in events, Living with diabetes

It seems to be the month for group therapy. Following my local Diabetes UK meeting a couple of weeks ago I spent a happy few hours last night in our local hospital. They run a coffee evening a couple of times a year for all those who’ve mastered the dark art of carb counting and insulin adjustment through their training programme, or who have a pump.

Put 15 pancreatically challenged types in a room with a nurse consultant and a pump specialist nurse and you can have a great little chat and catch up on the local gossip…

The hypo/pump/driving tightrope. It was interesting to hear the pump team say that they’re starting to see patients have to tread a fine line – previously when they were applying for pump funding, pancreatically challenged types would major on any hypo issues they were experiencing to help them meet the NICE criteria for pumps. But now, people are more wary of doing that, because if you report more than two major hypos in a year, the DVLA can review your suitability to drive . So they’re stuck between a rock and a hard place – the easiest way to get a pump is to be honest about any hypo issues, but in reality that can also leave you exposed to potential DVLA issues. This was exactly Dave’s comment recently.

Someone sees sense on pump insurance. It seems our local diabetes network have decided that they no longer require people to insure their own pumps, following guidance from Diabetes UK “People with diabetes have reported being asked to insure their insulin pump themselves, despite the insulin pump being the property of the NHS. Diabetes UK believes this is an unfair burden that should not fall to the individual with diabetes and/or their carers. The NHS and pump suppliers should work towards resolution of this issue.” That’s nice for me because that was the approach I’d taken anyway. It’ll be interesting to see if teams across the country do the same.

Exercise. It’s always interesting to hear how other people deal with exercise because I find it can be a bit of a black art. The general consensus seems to be to reduce basal a few hours before, and reduce the bolus for any meal eaten up to an hour before exercise – for me, for an hour’s fast swimming I’d reduce my basal to 25%, 90mins before swimming, eat a light meal about an hour for and only bolus for about 40% of it.

For those with any serious interest in sport, www.runsweet.com  has some useful tips. My favourite from last night, which had never crossed my mind, was to do a short sharp burst of intense exercise at the start of a session to force the body to produce the exercise hormones that naturally raise blood sugar. This should help stop you dropping during the session. And consider doing the same at the end, to delay any post exercise blood sugar slump. It’s certainly worth a try.

Patients can be powerful.  It was good to hear the pump team talking about how genuinely valuable patient feedback is to them – it gives them ideas for what they need to be doing next and helps them to improve. But it also gives them ammunition – often when trying to improve services a well-informed patient voice can carry a great deal of weight in getting issues addressed – so far that’s proving to be the case with my eye clinic situation.

Quote of the night…“Can someone tell Medtronic to speak English – my pump told me to check for an occlusion the other night and I had to look it up in the dictionary to find out what it was.” Now I come to think of it, it’s not a word that had ever entered my world before I started pumping. Surely calling it a blockage would be simpler.

 

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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.

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by Alison

Am I a nightmare patient?

12 July, 2011 in check ups, Living with diabetes

There have been a couple of interesting articles recently about how patients and Drs interact. There was a particularly amusing/irritating dispute on the CNN website where Drs had recorded videos complaining about “patients who know too much”. Patient advocates, including www.diabetesmine.com’s Amy Tenderich quickly gave those Drs short shrift, objecting to their defensive stance and highlighting the times that doing their own research and not following the Dr’s advice had been the right thing to do. There seems to be a fine line between being an informed patient and being a complete hypochondriac.

Then there’s the piece on the BBC news website where a Dr explains that patients should not be afraid to question their GP if they’re not clear what they’re talking about. Sounds sensible to me.

I’m a pretty pro-active patient. I like to be in control of my own health. On occasion I have noticed that some Drs find me a little too forthright and perhaps even intimidating. I like to get the most out of my Dr, which means I go prepared whenever I see them. Which means that I could be classed as a nightmare patient, according to the CNN criteria!

Dear Dr, I’m sorry if you think I’m a bit of a nightmare. But keeping all my limbs in tact and my kidneys funtioning is quite important to me. I like to get the most out of you, which means I like to know what I’m talking about before I come to see you, so I can ask you the right questions. For example:

• I’m always prepared, with all my facts, symptoms and issues collated. My agenda is clear and I know what I want from you.

• I will have been on the internet beforehand to research potential solutions to my issue – I’ll come to you with an open mind and ask your view, but I will also push you on potential solutions I’ve identified that you’ve not mentioned. That’s how I ended up using CGM. I do try not to self-diagnose myself with some form of lesser spotted lurgy when in reality the most likely solution is something far less exciting and easy to treat. So far, my research with Dr Google has never been wrong.

• When it comes to diabetes, I may choose not to share my detailed blood test results with you because I’m not very comfortable doing that, and will only do so if I have a specific issue I think I’d benefit from your input on. I know you don’t like this and it probably isn’t the most helpful approach, but I think I’ve been scarred from too many nightmare conversations over the years so that’s how I choose to work now. Sorry about that.

• If it’s complicated, I’ll provide a one page written summary of what’s been going on – because my medical records are generally incomprehensible and it takes ages for you to wade through them and routinely fail to pick out the significant events.

• I like to know what good care looks like before I go to the appointment. I mightn’t know exactly what’s wrong with me, but I have a rough idea, so I can look up the recommendations for how that type of issue is treated. For example, for diabetes I might look at the NICE recommendations and what Diabetes UK has to say about what care I should expect.  That means I know what questions to ask and roughly what tests I’m expecting you to run. I mightn’t let on that I have this info, I prefer to let you think it was all your idea and just prompt you with vaguely intelligent questions about why you’re not doing x and y. From experience, half of the time you come up with a great explanation as to why x isn’t relevant, the other half of the time you admit it might be a good idea to look at y.

• If I think a particular treatment might be right for me eg a pump, I’ll have read the criteria I need to meet to get a pump before I go to the appointment – that way, I know whether I’m being fobbed off, or whether a pump really isn’t the answer for me.

• If I don’t know what you’re talking about, I’ll ask you to explain.

• If I think you’ve got completely the wrong end of the stick, or you’re saying stuff that I really don’t think is right, I will keep pushing you to justify your advice until I’ve established that it’s either credible or you’re talking rubbish. If it’s the latter, I will seek advice elsewhere.

• I’ll always listen to what you have to say, but I mightn’t always follow your advice if I don’t believe it’s right for me. Don’t take it personally, I just like to apply some of my own brainpower and judgement to the situation rather than blindly doing as I’m told. I do this with everyone, not just Drs.

So, yes, I fear I may be a bit of a nightmare patient, because I have high expectations and am well informed. But don’t be scared of me, it’s by being well informed and demanding that I get the best results – and surely that’s what we both want?

 

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