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.)

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.

Shame and the shrinking Goldilocks Zone

Jonny Tomlinson’s post on Doctors, patients and shame was the piece of writing that led me to engage with health care professionals on Twitter. It opened my eyes to the human side of being a doctor, and to the possibility that the struggle I had in coming to terms with being a patient with long term conditions wasn’t a freakish weakness but a common experience which – gasp! – some people working in health care wanted to understand too.

Not that my shame vanished. At times it is still exquisite. Each admission seems to add a little to the pile and it rarely goes back to the previous baseline. The baseline creeps forward.

The Goldilocks Zone – between the shame of ‘not enough’ and the shame of ‘too much’

My long term conditions – diabetes, addison’s, brittle asthma – each require a degree of self-management. They are a particularly tangled combination, but many of the quandries I stumble on are down to the common theme of long term conditions: finding balance, as health care professionals like to spin it. In my world this is the constant seeking of goldilocks zones.

There is a goldilocks zone between not exercising enough (lazy, self-indulgent, not-trying) and over-doing it (reckless, over-confident, trying-to-prove-something). There is another between not paying enough attention to your diet and orthorexia (a particularly gnarly one for me as I have multiple allergies as well as diabetes.)

As a diabetic you deal with nested goldilocks zones when it comes to blood sugar. You have to put in effort to keep your blood sugar within range, 4-8 mmol/L, as much of the time as possible. And you also have to find the goldilocks zone of how much effort you are putting in to achieve this control. You will be judged for being too slack and also for being too focussed on your control. We can test our blood sugar too much or too little. And, of course, any two HCPs involved in your care define these goldilocks zones differently.

Medication ‘adherence’ is another goldilocks zone. On the one hand there are the patients who only know that they take 3 pills in the morning and at least one of them is white. On the other there are patients, like me, who know the exact dose, timing, purpose and interactions of their medications. (Addison’s is a condition in which missing medication invariably leads to serious illness or death in a matter of a few days.) Apparently the goldilocks zone with medication is to know the brand (but rarely generic) names of your medications but to be rather vague about the doses and even vaguer about the way the drug works. This is what is called ‘normal’ and if you step outside of this zone then you are to be mocked for your naivety or branded ‘abnormal’ for your ‘obsession’ with your health.

I now carry a SystmOne print out of my meds – in part it’s more efficient, but it also allows me to pretend that I couldn’t just write out the list off the top of my head. For every triage nurse in A&E who has said “I wish my patients were all like you!” as I reel off my drug list, there has been a doctor or nurse who has humiliated me for questioning the omissions and discrepancies in my drugs chart. “That’s not really for you.” “I’m sure the Drs know what they’re doing (shut up).”

In the moment these small cringe-yourself-inside-out experiences can be brushed off, but my experience has been that they leave a residue that has slowly built up until I find myself paralysed, unable to communicate spontaneously with my doctors and nurses. I’m perpetually caught up in trying to double and triple guess where they define the edges of the goldilocks zone.

Shame shrinks The Goldilocks Zone

My experience is that the more shame-residue I have amassed, the smaller the goldilocks zones have become. When I was more confident, less ashamed of my inadequacies both physically and in ‘coping’ with my conditions, I felt like I had more wiggle room.

Recently I’ve felt as though there are no longer any right decisions. For a while I thought that was a product of my increasing knowledge about the interactions of my conditions. But now I realise that I’ve reached a level of shame in which I expect to be perceived to be ‘doing it wrong’ no matter what actions I take.

The more shame I feel, the smaller the 'just right' zone seems to be

The more shame I feel, the smaller the ‘just right’ zone seems to be

Shame is a consequence of perceived judgement

Shame is felt in the context of judgement. In childhood the judgement is generally stated – “you didn’t think – you’ve let the school down, your parents down… “

In adulthood the judgement is contained in an unspoken “and…”. The unspoken “and…” intended and the one experienced by the patient may vary a great deal.

Patient: I’m really sorry… but I asked for my painkillers at 6.30 and it’s now gone 9 o’clock, and I really, really need them.

Nurse: (with irritation) Well nobody handed it over to me at shift change…

Internally both the nurse and the patient complete the and…

Nurse: and that’s just typical – we never have enough time to do the handover properly because we’re never staffed properly. We leave our patients in agony for hours all the time, I bet this one will complain. They should complain. It’s so depressing.

Patient: and so I don’t believe you – you’re trying it on in order to jump the queue.

Both the nurse and the patient feel shame in this kind of scenario, and I believe that on the wards I regularly observe a kind of co-shaming, where shame is passed from care-giver to patient and back again. Multiplying as it moves, and distancing us from each other, leaving even more space for the shame to expand into.

 

The shame of specialness

In The Gift of Therapy, the psychotherapist Irvin Yalom (one of my favourite thinkers) writes

One of our chief modes of death denial is a belief in personal specialness, a conviction that we are exempt from biological necessity and that life will not deal with us in the same harsh way it deals with everyone else.

We feel shame for being sick, but also shame – if we have enough insight – for being exposed as someone who believes themselves to be ‘special and different’, not deserving/destined for suffering, pain and death.

These it-won’t-happen-to-me mind games are a requirement for productive living in the presence of conscious awareness of mortality. People who don’t play them well enough – who spend their days locked in a tiny world because the randomness and danger Out There terrifies them, are shamed for being reclusive.

Once you realise that yes, it is happening to You, you want permission to enter the Sick Role but without having to leave your entire identity on the clothes peg when you put on your gown. Yet the NHS cannot, despite the clamours for patient-centeredness, provide us all with tailored health care, especially in hospital. There is a prohibition against being ‘special and different’ – truly patient-centered care requires resources that simply don’t exist.

Ward culture – shame as a demand management strategy

The typical inpatient experience is of a four or six bed bay, with bed areas divided by curtains designed to afford some privacy. The curtains may hide my nudity, but they allow for every transaction between a patient and their health care providers to be observed. And I suspect that, ultimately, this is to the advantage of the staff because it preserves our inhibitions. We tolerate things that are bordering on intolerable because we can’t face the shame of being seen to be demanding / a wimp / not able to suffer politely.

This reduces the demands we make on staff and moderates our reactions to unacceptable care where it arises. The threat of shame in front of our bay-mates and their visitors keeps us in check.

Where medication, illness or sheer desperation make us disinhibited, we are double-shamed. With a caveat that I have experienced some excellent nursing care at times, nurses often speak to patients who have dared (or fallen) to override their inhibitions and express distress, concern or desperation in ways that not only shame the patient but also fire a warning shot to other patients present;

Oh come on, there’s no need to get all upset!

You should have buzzed sooner.

Why didn’t you say something when the Dr was here?

I can’t do two things at once!

We do have other patients to look after – some of them are very poorly.

None of these responses is overtly humiliating, but the implied judgement is that the patient is some combination of weak, stupid, thoughtless and/or selfish.

Shame cannot pass from Adult to Adult

Transactional Analysis (an integrative approach to psychology/psychotherapy) models interactions in terms of three ego-states – Parent, Adult and Child.

Loosely, (with apologies to my partner, who is a TA psychotherapist), the Parent deals in rules, the Adult in thoughts and reflections and the Child in feelings. The ego-state can be overt or it might be more subtle, needing to be interpreted through facial expressions and tone of voice.

Two Adults having a conversation cannot shame each other. We can talk about shame, we might even confess things of which we feel ashamed, but the shame is not being passed between us. Jonny Tomlinson writes about a recent experience in which his work with a trainee led him to feel ashamed of how he had communicated his irritation to a patient. It’s clear that in the work they were doing, both he and the trainee were in Adult. This made it safe for them to be vulnerable with each other, because they didn’t judge each other.  In contrast, the Parent ego-state, being the holder of the rules, is constantly judging. Good girl, bad girl.

Patients often present in the Child ego-state. They are collapsed, overwhelmed by their feelings – emotional as well as physical. Ideally, we need to be nurtured back into our Adult ego-state, in which we can reflect and think, give consent mindfully, make treatment choices that take in our wider lives and be active members of our care team.

Unfortunately, this is less efficient, on an hour to hour basis, than having patients who are in the Child ego-state and will Do As They Are Told by health care providers who act from the Parent. The Parent-Child dynamic is the traditional paternalistic model for the medical consultation.

Whether nurses on the wards, consultants on the ward round or GPs in the 10 minute consultation, the temptation to assume a Parent ego-state is ever-present. In the majority of cases, the patient, who has no power except that of veto, will acquiesce into the Child role. The consultation may pass without any obvious moments in which the patient was actively shamed. The clinician may answer their questions patiently and generously. And the patient may still go away feeling ashamed that they didn’t really ask the things they wanted to, didn’t really challenge the weaknesses they saw in the plan, didn’t speak up about their concerns. Not only are they weak physically, they are weak psychologically too – ashamed of the being afraid to speak up when it matters so much.

You cannot guess what will shame me

Irvin Yalom (who should be compulsory reading for all medics) talks about the client’s whole world, their entire past, being present in the consulting room. As a result, no two patients will – or can – respond the same way to the same stimulus.

Therapy is like a living Rorschach test – patients project onto it perceptions, attitudes, and meanings from their own unconscious.

Shame requires hooks. When I was younger I felt deeply ashamed about being gay. I had been brought up Baptist and homosexuality was up there with murder, an abomination against God. I had deep hooks for homophobia and quickly felt shame in response to all sorts of gay-related triggers. Today I feel entirely comfortable with my sexuality and there are no hooks for homophobia to connect with. If I met a homophobic nurse or doctor I would, once I’d got over my shock that such people still exist, challenge them and then report them. I wouldn’t squirm about it.

On the other hand, I have felt extremely ashamed about my aspergers this last year. In January I was admitted as an emergency having been ill for a few weeks. The FY1 who wrote my discharge letter put that I had “Abnormal Illness Behaviour” – referring to the extent to which I had tried to self-manage my condition. (Seriously, who wants to be in hospital at Christmas?) I managed to speak to him on the phone and he agreed that it was inappropriate to have used a diagnostic term, especially such a pejorative one, and he re-wrote and re-issued the letter, but the shame hasn’t gone away.

I will never not have aspergers, and I fear that if I describe how I manage my health to Drs in future they will judge me as being a freak. Abnormal. Normal is reading Heat magazine and not knowing what meds you take because your brain is full of facts about C-list celebrities. I fear that his original terminology is still on my records. I would like to find out, but I think I might actually die of shame if I read them.

Auditing shame as a patient experience

A search for the word “nuisance” on the patient feedback site Patient Opinion brought up 49 pages of results (as at 2nd Sept 2014).

“[Staff] were unapproachable, I felt as though I was being a nuisance”

“at no time was I made to feel I was being a nuisance”

The negative comments are perhaps unsurprising, but the positive ones should make us pause for thought. Of all of the infinite things that didn’t happen, and all the things that the patient didn’t feel, ‘being a nuisance’ is the one that they chose to bring to the forefront.

The experience of being made to feel like you are a nuisance is so pervasive in health care that it is worthy of comment when it doesn’t happen.

You only have to spend an hour in a hospital ward counting the number of apologies in order to recognise that the overriding culture is one in which patients expect to be treated as though they are a nuisance. Not apologies from nurses to patients, but from patients to nurses.

I’m sorry nurse, I need to go to the toilet.

I’m sorry, I know you’re busy, but I haven’t had my anti-seizure medication yet and it’s an hour late.

I’m sorry, someone said that they would refill my water this morning and then they must have been too busy…

Here is a simple audit that could be done by almost anybody: audit the number of sorrys on a ward – from patients to staff.

When patients are frequently apologising to staff it’s a clear indication that they feel like a nuisance, which I believe is a proxy for co-shaming in the care-giver/patient relationship. Co-shaming is likely to be a proxy for deeper problems that need to be addressed.

We could also do a daily ‘Nuisance test’ – anonymously, tick the form, shove it in the shoebox:

Today, I felt like I was seen as a nuisance:

[  ] All the time
[  ] Frequently
[  ] Sometimes
[  ] Rarely
[  ] Not at all

Reducing shame through Horizontal Disclosure

Jonny Tomlinson talks in his original blog on shame about feeling shame himself at seeing the patient’s shame. What kind of a GP must he be that his patient felt such deep shame in his discovery of her problem? In my experience, probably a really good one. I struggle with shame and fear around my relationship with my GP because she is so good. I feel that she likes me, and the care I get is excellent. Therefore there is a lot to lose if I mess things up. And the idea of going to the doctor to tell them that you feel so anxious that you can’t go to the doctor is rather confusing.

So what can we do? As Yalom puts it, Horizontal Disclosure is disclosure about the act of disclosure.

Shame about feeling ashamed is a vicious circle that often leads to patients keeping information from their health care providers that they should ideally share. Yalom suggests that we can increase the possibility of sharing by directly inviting Horizontal Disclosure, as a precursor to actual disclosure, with questions like:

Is there anything that you don’t feel able to tell me?

Is there anything you wish I knew without you having to tell me about it?

These questions are much more powerful than the simple fallback “Do you have any other questions?” used in many consultations. They say – Adult to Adult – I realise that there may be aspects of this situation that are difficult to talk about, and that’s normal and OK, and yet I still want to hear about those things.

When the patient does disclose what they feel so much shame about, the natural reaction is to sort the new information into one of two piles: oh, that doesn’t matter or dammit, why didn’t you tell me this before? These reactions may be accurate and authentic, but either of them is likely to simply add to the patient’s shame. Instead it’s important to spend some time in the horizontal disclosure – Why was this so hard to talk about? What did you fear would happen?

Becoming aware of when we invite others to feel ashamed

As a person with diabetes, obviously I realise that I am part of the problem that is bringing the NHS to its knees. I’m ‘fortunate’ not to be Type 2, but an odd Type 1 variant (probably Type 3c) – I say fortunate because while being insulin dependent is a bit of a hassle, at least my diagnosis means that, according to media folk-lore, I did not bring it on myself. People say “oh, you must have the bad kind!” but really I have the good kind, because I would not trade you all the blood tests and insulin injections in the world for metformin-and-a-dose-of-its-your-own-fault.

When I’m steeped in shame and stewing about how much it costs you good tax payers to keep me alive, I sometimes think to myself ‘at least I’m not fat’. Not because being fat is the worst thing in the world, but because it’s official – people who are obese should be ashamed of themselves. And if they aren’t ashamed then they should damn well be ashamed of not being ashamed of themselves!

We know almost nothing of the complexity of most people’s lives, but we feel compelled to make judgements, to engage that critical Parent ego-state, at the drop of a hat. Patients should know better than to go to the GP with dental abscesses! Patients should know better than to go to out of hours when they have only been unable to keep down fluids for 44 hours and not the required 48! Patients should know better than to ask for antibiotics for upper respiratory infections that have only been ongoing for two weeks! Don’t they know that according to recently updated evidence based guidelines it’s no longer the done thing, even if it’s green… never mind that the last time they were at the doctors was before the update when their GP was still intensely interested in the colour of their snot.

We are all too quick to judge each other. On both sides. Patients are fussy about being kept waiting for a (free) doctors appointment while they don’t mind waiting 15 minutes for a Chinese takeaway. We are deeply intolerant of our doctors’ tolerance of uncertainty.

We need big, achievable goldilocks zones on both sides – being ‘good enough’ as either the patient or the health care practitioner has to be possible, and ideally probable.

The experiment I suggest is that we all look in the mirror each morning and say “every day, in every way, everybody is probably doing their best in an imperfect situation”. (Including ourselves, maybe).