Monthly Archives: November 2014

Diabetes: Why I’m grateful to be falling faster

A confession: if you tweet too many positive-thinking text-on-a-pictures I will unfollow you. Or maybe mute you. My twitter filters include about twenty variants of ‘inspirational quotes’. I block any feeds that tell you to cheer up, be mindful or adopt a different attitude.

Interestingly, I don’t think this is because I’m a pessimist. My partner would probably describe me as a relentless optimist, but one who likes to plan for every eventuality (to the extent that might at times need to be medicated). But still, I hate those “Cheer up, it might never happen, be mindful of the lemonade you can make while you’re climbing mountains and this is all making you a better person anyway.” messages.

So. What to write for World Diabetes Day? A thousand word whinge? An ‘I can do ANYTHING with diabetes’ defiant rant? (Which I believe is – just as we can’t all be olympic athletes – absolute tosh, there are a lot of things that I used to do that it would be reckless and selfish to do now). Hopefully I’ve found something in between. Diabetes sucks, it’s painful and it makes life chaotic. But in the long run, some of that pain and chaos is useful, maybe even positive.

If something is going to hurt, hurting faster is better

I’m not talking about finger stabs and insulin injections… but the consequences of day after day of lifestyle choices, that all of us in the developed world live with. I want to step away from the idea that all diabetes, or even all type 2 diabetes, is lifestyle related. We see correlations, but they aren’t causations. We have no idea what causes most variants of diabetes, and the judgements people make about those with Type 2 diabetes are why I consider myself to have ‘the good kind of diabetes’ – at least nobody thinks it’s my fault, and I’m not required to be ashamed of myself.

However, we do know that, generally, people who exercise and are fit, and who eat a healthy diet, have better quality of life, particularly as they get older. It’s something that no rational person would choose not to do. And yet it seems like increasingly we aren’t doing it.

It’s obvious that making ‘good’ choices about diet and exercise is hard. Even our doctors, who know the risks and the benefits, find this hard. It’s hard because the longer the gap between our actions and their consequences, the less we can make the association. For most folk, the gap between food and exercise choices and the consequences is weeks and months and years. Our brains simply aren’t very good at really feeling that these kinds of cause-and-effect patterns are true. Pitched against the immediate rewards of the taste of chocolate or an extra hour under the duvet on a cold morning, the odds are really stacked against the ‘rational’ choice.

Diabetes shortens the time between our lifestyle choices and their consequences

Diabetes shortens the time between our lifestyle choices and their consequences

But when you have diabetes, especially if you have a volatile diabetes like Type 1, or Type 3c (which I probably have) or a brittle Type 2, when you make the less-good choices about your diet and exercise it really hurts, really fast. And that makes it easier for our brains to make connections. The fact that it actually hurts – nausea, dry mouth, throbbing head – it’s not just a kind of theoretical notion about a risk in the future, is especially powerful. Concrete beats abstract, every time.

I absolutely love rice, but I simply cannot match the timing with insulin – I seem to either hypo before I’ve eaten or spike right into the 20s. Even with split doses. So I’ve stopped eating rice, not because those kinds of fluctuations will give me vascular damage over the years but because having blood sugar levels flying between hypo and a serious high feels horrible. And crying into my rice is not fun. (I have cauliflower rice instead now, so it’s all good, except for sushi… ah, sushi, how I miss sushi…)

We might well resent these connections, the strength of the correlation, because we look around and see that Type Zeroes can eat a pizza and not suffer for three days. We might choose to have that experience every once in a while, but it’s not something we can do twice a week, or we’ll never feel well.

It can feel restrictive, but I doubt that when I’m fifty I’ll look back and think ‘I wish I’d been less responsible about my diet and exercise’. And when we do it ‘right’, when we have a great HbA1c with no-hypos because we worked really hard for a couple of months (and all the random factors like infections and hormones and the weather also blew in the right direction), it feels amazing.

Not that it’s easy. The majority of people with early-onset diabetes have some kind of eating disorder. All that mindfulness about carbohydrates can really mess you up. The pain when you get it wrong can lead to phobias about specific groups of food, or all food. And sometimes we go through phases where we’re so angry at our bodies that we screw it all up on purpose. But there are a lot of people doing that with their lives, and – again – most of them will get away with that for a lot longer before someone notices and says “Hey… what’s up?”

Exercise in particular can be hard to get right. But at least we’re mindful about whether we’re exercising at all. We can’t slip in to sedentary habits on the quiet. And that is where the benefit of diabetes is – it brings the future forward, and it magnifies the difference between good choices and bad choices, not just in terms of long-term complications but in how we feel in the here and now. And our brains respond more powerfully to feels than to thinks. We can’t pretend, to ourselves, that we’re kind-of-ok, when we aren’t. And that transparency and immediacy is a gift.

(Just don’t tell me to make lemonade, because high sugar drinks are only suitable as hypo treatments, and I’m really badly allergic to lemons.)

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NHS Information Sharing – Silos and Spillages

I’m currently trying to get my fracture care transferred from one hospital to another. The NHS appears to have few mechanisms for referral to a fracture clinic other than to present at A&E.

The big hospital can’t view the x-rays taken at the little hospital.

Ah, the information guardians say, you can’t be too careful.

Yes, I say, you can. Not sharing my fibula x-ray is too careful.

But at least these defensive non-sharing siloed systems protect us against confidentiality breaches, don’t they? No. They don’t.

I’ve been doing some work with Liaison Psychiatry, primarily on writing a care guide so that in future I get safer care in hospital. Once we’d finished the ground work on that, we used some sessions to talk more generally about things I was struggling with related to my illness and also my past – for all of us bring our whole selves to our illnesses, strengths and wounds.

I had agreed to share the care guide sessions with my consultants. The other sessions were supposed to be confidential – though I had given consent for them to be shared with my GP, who I tell pretty much everything to anyway.

My psychiatrist wrote some session summaries. After that she wrote an outline care guide, and duly marked the care guide to be CC’d to my consultants. Unfortunately it seems that the administrators executed the sending of the letters containing summaries of our confidential sessions after the care guide. The ‘system’ carries CC information per-patient, rather than per-letter. With hindsight my consultant should and could have marked the letters ‘GP and patient only’, but she hadn’t anticipated the CC being attached to them.

The outcome is that the notes of my confidential sessions with the psychiatrist were accidentally CC’d to my medical consultants.

I realised the mistake (though I didn’t know that it was an error) when my own copies arrived a week later than they received theirs. I saw their names on the CC at the bottom and was shocked.

I’m gutted. There is no other word for it. Psychiatry and psychotherapy offer – should offer – sacred spaces that are only fractionally less confidential than the confessional box.

No malice was intended, but harm was done.

This is my experience, my unrelenting repeated experience, of the NHS.

Sorry, we didn’t mean to hurt you. We’ll try harder next time. And look, it’s not really bleeding that much…

In this case my psychiatrist had the courtesy not to try to minimise the harm that was done. Relying on the NHS on a regular basis is like being trapped in an abusive relationship. You can’t leave, so you just have to tread carefully and try to dodge the blows when they come. As patient you end up paranoid, terrified and constantly trying to second guess what cock-up will come next.

So. On the one hand, I cannot get information sharing between two fracture clinics about my unhealed broken ankle. On the other hand, my deepest, darkest most shameful secrets are accidentally shared with people who I very much didn’t want to know them. Doctors with whom I have to keep an ongoing relationship. The letters were ‘withdrawn’ but I will never know whether they read them. It makes me want to vomit at the thought of seeing them in clinic.

I won’t ever disclose anything to an NHS psychiatrist again, because no matter how well intended and excellent they might be (and I believe mine is), they operate within a Total Institution – within systems designed for the benefit of the institution, or the staff, not the patients (victims? prisoners?)

At some point I will probably go back to private psychotherapy to deal with the fall out of having my confidentiality breached in such an extreme way. At the moment I can’t access private therapy because I’m waiting for my fracture to be mended. What a beautifully screwed up health system we have when it comes to information sharing.

Whose risk is it anyway? How protocols fail real patients

Nine weeks ago I broke my fibula. Nothing dramatic, just an awkward foot placement stepping out of my front door and it snapped. A simple, clean break. Weber A. Well separated, but ‘stable’. The prognosis was good – six weeks in a cast, the first four non-weight-bearing. I’d been due to run a 5k for my partner’s birthday just six weeks later, so that went out the window. I revised that goal to 5k ‘by the end of 2014’.

Not ‘just’ a broken fibula

The fact that I have Addison’s makes things a little more complex. If a person without Addison’s breaks a bone their body mounts a cortisol response to help with shock and then with healing. Mine doesn’t, so I had to manage this myself, with only anecdata and one study of cortisol levels in elderly people with hip fractures to go on. But I managed – I even did my own IM steroid injections so I could stay out of hospital – better for me, better for the NHS.

I also have diabetes, so I had to think about hypos. The crutches present two problems: having poor balance during a hypo could be disastrous, and moving around on crutches is itself a form of exercise and as such can cause rapid hypos. I have osteoporosis so falling from a standing height could result in a broken arm or broken ribs, which would then put me in a wheelchair. So I modified my diet and my insulin to low-carb and run my blood sugar slightly high. This is not ideal. It’s uncomfortable, means getting up to pee two or three times every night, and I struggle to maintain my weight anyway, but running ‘hot’ is viable for six or seven weeks.

Time isn’t always a great healer

Unfortunately my fibula didn’t heal within the standard six weeks. The current x-ray, after two months, looks no better than the one done at two weeks. There is a high probability that I will need to have surgery to put a plate and screws on my fibula, with a bone graft to encourage the formation of new bone. That 5k is getting further and further away.

I want to be treated as a system, not a component

I have all my medical care at the big teaching hospital in Leeds where they have enough patients with my rare condition to have genuine expertise. But when I broke my ankle, the ambulance would only take me to our tiny DGH, so my fracture is being managed by an orthopod with no access to my medical records. If I need to have the surgery, I will have it at my main hospital. If there is a decision to be made about whether surgery is the right treatment and what specific approach might be best, ideally my medical doctors (diabetologist, addison’s specialist, bone-endo) should have the opportunity to consult on this decision.

The protocol states that the need for surgery in delayed union of the fibula should be determined at 12 weeks. I want to have my fracture care transferred to my main hospital ahead of that decision, so that in week 12 my x-ray is done at the big hospital, and my previous x-rays have already been transferred across. (I’m trying to ignore the fact that my garmin, fitbit, myfitnesspal, google maps and glucose meter all integrate automatically while for a Doctor to view an x-ray taken at a Hospital 30 miles away requires human beings and complicated admin.)

Ideally, I would like the decision moved forward a little – if it’s not healed at 11 weeks, is it really going to be healed at 12? I can’t keep running my blood sugar high indefinitely – I’ve already had two bacterial infections and three fungal infections during this nine weeks.

So, at fracture clinic on Tuesday, I made two requests of my orthopod:

1) Please transfer my care to the main hospital, where I will need to have surgery anyway, so that the decision about surgery can be made in a holistic and timely way.

and/or

2) Please consider taking a look again a week or two earlier. If there has still been no further progress then we can probably make a decision at that stage.

He turned me down on both counts. He will make the decision about surgery himself, at week 13, and if he decides, in isolation from my medical doctors, that I need surgery, he will start the transfer process then. This will be the first week of December, and it will take 1-3 weeks to do the transfer.

The middle of December is not a good time to have a referral for a semi-elective surgery. Christmas schedules and winter pressures (ice+drink=ankle fractures) will put pressure on limited resources. I also know that Leeds orthopaedics is tragically one surgeon down after one of their lower-limb trauma surgeons died in the surfing accident in Cornwall. Plus I will need a bed overnight, not just a day admission. Chances are, I would be waiting until mid-January for my operation. This means that I would be out of plaster again at the end of February. After six months largely in a cast I am warned by my physio that it’ll take around another six weeks to get back to walking comfortably. So, I should be back driving and walking by Easter.

Whose risk is it, and who decides what a good outcome looks like?

The orthopod’s concern is that there is a risk to jumping the gun and giving the go ahead to surgery that I might just about get away without having.

I understand his concerns. I will need to have two general anaesthetics (one to put the metal work in, another to remove it a year later). There is a risk of infection – higher because of my diabetes and Addison’s. The bone graft may give me a new injury in my pelvis. There will be scars which may not heal nicely. There is the possibility of a nasty leg break if I twist my ankle while the plate is still in place. The risk of each of these is small – the majority of people have a good outcome.

In the meantime, I am unlikely to get away with an extra period of running my blood sugar high without infections anyway. But these will be chest, ear, skin, eye – not bone or the surgical site, so they don’t figure in the orthopod’s calculations.

There is also a toll on my mental health. I am depressed and anxious and becoming more so. I have aspergers and I manage my anxiety by walking and running and spending time with my dog. Sadly our dog died last week. We will get another dog, and this will make a big difference to my mental health, but we can’t do that until I am completely mobile again.

Here are the risks/rewards of the options as I see them:

Option 1: Early transfer to main hospital, surgery decided at 11 weeks.

  • moderate risk of unnecessary admin burden to NHS of transfer if surgery not required
  • very low risk of serious surgical harms (GA, infection, pelvic graft complications)
  • certainty of post-op minor harms (vomiting) and need for 1 night hospital stay
  • moderate risk of harms as a result of inpatient stay (insulin error, cross-infection)
  • very high possibility of being pain free and walking unaided in February

Option 2: Week 13 assessment at DGH, then transfer to main hospital.

    • very high risk of complications from high blood sugar – infections, dehydration, ketosis, weightloss
    • moderate risk of blood sugar complications triggering Addison’s crisis
    • high/moderate risk of emergency admission due to the above
    • high risk of not being pain free and walking unaided until April
    • high risk of increasing depression, anxiety
    • moderate risk of serious breakdown in mental health
    • certainty of further loss of fitness, further loss of muscle in the affected leg

Option 3: Week 13 assessment, ‘manage conservatively for a further 3 months’

  • risks as Option 2
  • certainty of no return to running / hill walking for several months
  • some risk of re-fracturing during the rehabilitation period
  • moderate risk of longer term poor outcome in ankle ligament strength
  • moderate risk of still needing surgical fixation at 6 months, incurring risks as Option 1.

You can have any colour you want as long as it’s red

My orthopod presented me with the illusion of choice, because he expected me to want ‘anything but an operation’. But when I said “I choose the aggressive path – getting back to 100% fitness is the only outcome that I really put value on” he told me that it wasn’t my choice after all.

I don’t believe he could see all the risks above – he certainly didn’t appear to be taking them in when I tried to explain them to him. He was concerned about my diabetes and risk of infection, but only with respect to the fibula fixation procedure – he could not make the leap that if I am more likely to get a surgical infection then I am more likely to get any infection. Non-surgical complications of the consequences of managing diabetes while on crutches appear to be off his radar.

Clinical queueing systems are designed by butchers

I feel awkward about writing this part, because there is shame attached to exposing any belief that I should be treated as ‘special and different’ within the NHS, but I’ve come to the conclusion that if the purpose of the NHS is to relieve suffering and promote wellness, queues that are based on clinical need on a single axis are morally weak.

I am in the control arm of a 3 year study into different treatment approaches for Addison’s. For the study I have to keep a diary that documents illness and injury and need for extra steroids. In the last year I have been ‘well’ enough to function normally for a total of about eight weeks. I’ve spent 2 months of the last 18 in hospital as an inpatient, and as many days on day visits and/or patch-up acute care. Like many people with long term conditions, my good days are limited. Much of the time there is nothing more that we can do to increase those good days – we just have to live with them. But in some cases, the NHS has it within its power to relieve an acute problem and return us to whatever our ‘normal’ is.

I think people with debilitating LTCs should get a queue jump.

Currently we order treatment queues on the basis of the single problem that whatever is at the end of the queue will address. As if we have been neatly sliced by butchers into our separate limbs and organs. I think we should provide queueing that takes into account the whole person’s health situation. If you are unlucky enough to have a serious long term health problem, and then doubly unlucky to suffer an unrelated, resolvable, acute problem, you should be a priority.

I also think that we need movable dotted lines between undertreatment and overtreatment that are able to take in the whole clinical picture, not just the specific problem being treated. I understand that in a 38 year old with no other health problems, proceeding to surgical fixation of a delayed union fibula at 10 weeks would be over-treatment for the small percentage of patients who have a magical union acceleration in those last 2 weeks. But for me, no, I don’t believe it would be over-treatment.

I am, right now, suffering (not just at risk of) systemic harms as a result of my unjoined fibula. Because I had to run my blood sugar high I developed a nasty bacterial infection in my otherwise mild blepharitis (inflammation of the eyelids). The antibiotics I needed gave me GI problems, though they cured the infection. The GI symptoms destabilised my Addison’s and I spent all day Saturday in hospital having IV fluids to remedy the problem. My BMI is now back below 17 for the first time since I started insulin 9 months ago. In about 3lbs I’ll be in the danger zone where previously I’ve had crises due to ketosis once I’ve run out of fat to burn.

But the orthopod is worried about the fracture and the 12 week window. Because in silo medicine all our protocols are built on pieces of bodies in isolation. We need to knock them off their pedestals. Burn them, because evidence based medicine always excludes the messy complexities of real patients with real, multi-system, health problems. Evidence based health care protocols are suitable for the otherwise-well people, and they only look like gold standards from a place of healthy privilege.