Noise versus Signal in Patient Experience

I have aspergers. Like most things in life, what this means varies from moment to moment. Aspergers isn’t a Thing, it’s a way of being that is sufficiently different from the typical human way of being (in western societies) that it generates particular kinds of difficulties.

At present, I am acutely aware of the difficulties generated by autism-related differences in differentiating noise and signal. I experience this as a looping, anxious thought pattern as I attempt to squeeze every possible interpretation out of communications and apply various sets of logic in order to work out which one is The Truth.

I believe in The Autism Spectrum, but I don’t believe everybody is on it, in much the same way that I don’t believe that everybody is on “The Visual Impairment spectrum”. However, I do believe that most patients are on the “Noise-versus-signal anxiety spectrum”. Continue reading


I’m not normal (and neither are you): a letter to an A&E Doctor after a difficult encounter.

This is an actual letter that I am about to send, six months on from an A&E visit that left me confused and distressed. For obvious reasons I’ve changed the names and removed the name of the hospital. I’m sharing it here because I hope it might help other HCPs to understand some of the peculiarities of patient behaviour. I’m sending a direct letter and not a complaint via PALS because I just want the doctor in question to think about it, I don’t feel I want to raise a complaint.

It has taken me a long time to mentally draft the letter. I don’t feel it’s useful to simply rip my own skin off and make myself even more vulnerable when raising a problem in healthcare – I need some forcefield of interpretation, and finally found one in the realisation that myself and the Doctor in question have never really met.


Dear John,

I was a patient treated by you in the Emergency Department of your hospital earlier this year.

By now you will have treated many hundreds more patients, and I have probably faded from memory; I wasn’t particularly sick, and the treatment I needed wasn’t particularly interesting.

Broadly, the care you gave me that day was good – which fits with the experiences I have of A&E at your hospital, it’s a place I usually feel safe and supported. Unfortunately the end of our interaction didn’t go very well, and I wanted to give you some feedback to reflect upon.

Continue reading

Egg Theory – A Model for Understanding High Maintenance Long Term Conditions

“Once diagnosed and stabilised on insulin, people with Type 1 Diabetes can lead a normal life.”

This is the story we are told, at diagnosis. Test your blood sugar, take your insulin, live a normal life. The same was said to me about having Addison’s – a condition in which my adrenal glands no longer function, giving me a kind of ‘diabetes of all the things’ – blood sugar, blood pressure, fluid balance, electrolyte levels, immune system all no longer automagically controlled, and instead depending on me to manually intervene to adjust them.

But, like many chronic health conditions, diabetes and Addison’s are needy. The truer statement would have been:

“You can carry on with your normal life, you just need to carry these eggs with you, 24 hours a day, 365 days a year, forever.” Continue reading

So long, @grangerkate

It has been just over a month since my friend Kate Granger died. The @grangerkate column in my TweetDeck stands still, but mentions of Kate flurry past. Still changing the world, a tweet at a time.

I’ve been watching a drama called Mr Robot. In one episode the main character is talking about a childhood conversation with his father, after he accidentally brought home a shoe full of sand from the beach.

Every day he said we change the world. Which is a nice thought until I think about how many days and lifetimes I would need to bring a shoe full of sand home until there is no beach. Until it made a difference to anyone. Every day we change the world. But to change the world in a way that means anything that takes more time that most people have.

Kate had less time than most of us. But she used it to change the world. The breadth and depth of reporting of her death would have amazed her. As a member of the UK’s peer support charity for people with Addison’s, I was asked if I would like to write an obituary. It took quite a few deep breaths, but I’m proud to have had a chance to share some of what I knew of Kate, and loved of Kate. Continue reading

What is this ‘Resilience’ Thing, and How Do I Get Some?

Cards on the table, the term resilience irks me. It seems to have emerged as a fluffy, fudgey term that at best places an excess of responsibility on the individual, and at worst is a synonym for MTFU. But let’s put aside the uses that have an insidious agenda and focus on those with genuine good wishes at heart.

A quick I-feel-lucky google search gave me this definition:

Resilience is the ability to recover and bounce back from adversity and hardships, feeling stronger and more capable to cope than ever before.


Ok. Great. I’d like that. I’ll have three pints of resilience please!

What does resilience look like in the wild?

Annie Coops has written an ace post here about her interpretation of reslience and the importance of ordinary.

Personally, I’ve begun to form a picture of resilience as being the ability not to stand strong, without wobbling, when you are buffeted and bashed by events, but to weeble your way through them.

(All (born before 1985) together sing: Weebles wobble but they don’t fall down.)


Weebles don’t fall over because they have a low center of gravity, created by the weights in their base. If you drilled out some of that base, they would become less stable, and this is the model I’m now using to think about my own resilience. I have ‘stuff’ – stones and pebbles, more on them later, in my base, and depending on the stability provided by that ‘stuff’, I do or don’t fall down when I’m wobbled.

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What is it that keeps us weeble-ing?

I had a good discussion about what resilience is on Twitter earlier today – is it just about knowing how to keep yourself on track, understanding your own psychology, how to cope, how to deal with the problems life presents, what keeps you well and happy, or is it something more concrete?

I would say that while the knowledge is a necessary pre-condition for creating the stones and pebbles that fill up my weeble-base, knowledge is not in itself sufficient.

An example: I may know that the best way to keep my feet dry on a puddley day is to wear wellington boots. In order to actually keep my feet dry I also need the means to acquire and store those wellies, and the physical ability to get them on and off. (Middle-age fast approaching here).

Of course, getting your feet wet is not really ‘adversity and hardship’ – but in the context of my long term health conditions, ‘adversity and hardships’ are the things that can cause it to go wrong. When it goes very wrong, I end up in hospital, and when it just goes a bit wrong, life becomes a bit rubbish. I use my physical activity as a proxy for measuring things ‘going right’. So – ‘the ability to recover and bounce back from adversity and hardships’ is the ability to (in order of importance):

  1. Stay out of hospital
  2. Stay well enough to function for work and home-life
  3. Stay well enough to be physically active
  4. Bounce back to (3) as quickly as possible from any blips

The stones and pebbles in my weeble-base are the things that stop a minor infection from turning in to a hospital admission, or a broken limb from turning in to several months of struggling with my mental health. They stop a difficult clinic visit from spiraling into a recurrence of my hospital-phobia. Basically, they are the things that keep life normal-ish, ordinary, as Anne said, or allow it to return to normal as fast as possible.

What are the stones and pebbles?

The stones in my weeble-base are big things, there through a combination of my knowledge that they’re needed and the external conditions that allow me to have them.

  • My partner
  • My dog
  • Friends and family who help us out
  • The drug-bag full of emergency medicinces, my nebuliser etc
  • My GP
  • The multiple specialist-nurse phone lines I have access to for diabetes, asthma, addison’s
  • Our car
  • The local bus service to allow me to get out when I can’t drive
  • The knowledge to carb count and adjust my insulin
  • Sick day rules for diabetes and addison’s
    … etc

There are also pebbles, these are things that constantly need to be topped up – the pebbles spill out through every-day wobbles. My pebbles include:

  • Running
  • Parkrun (as distinct from running)
  • Walking our dog
  • Doing my aspie-activities – lego, puzzles, maths
  • Keeping to my routines around bedtime
  • ‘Happy foods’ – Hula Hoops, Diet Irn Bru
    … etc

When we talk about self-care for long-term conditions, we are often referring to the pebbles. Knowledge of the importance of the pebbles is crucial as they’re easy to deprioritise and they make up a vital part of our weeble-base.

The bigger things, however, usually require some external good-luck. For example, I can know that having a dog is good for me, but a dog also requires food, vaccinations, insurance, wormer and a helpful neighbour to step up when I’m acutely unwell. I’m fortunate that we can afford our dog and have great neighbours. In some places there will be charities that can help with free or subsidised pet healthcare, but many folk won’t have this option.

I am very fortunate, given my conditions, to have the capacity to acquire and retain information about how to manage my medications dynamically. I know when and how to use my emergency medications, but I also have a GP who is willing to support me in that and prescribe those drugs for me to keep and self-administer so that if a blip starts over a weekend I can get on with treatment.

I understand the importance of testing my blood sugar and the extra dangers of hypos in addison’s. I also appreciate that the ‘normal’ ranges we use for blood sugar may not be tight enough for people with lung disease. My HbA1c has been creeping up and I’m not gaining weight as I should be, so yesterday my diabetes GP-Nurse and I talked about the importance of doing more testing – and, crucially, she agreed to increase my test-strips to 400 per month so that I can test for highs as well as hypos – at the moment all my testing is focussed on avoiding lows.

She also helps by being there on the phone if I have any questions or concerns. The specialist nurses – at my GP and at my hospitals – are a great example of how the stones in my weeble-base come and go with the day of the week.

During office-hours, my support network looks like this:

Screen Shot 2016-03-15 at 12.20.42

Evenings and weekends it looks like this:

Screen Shot 2016-03-15 at 12.20.52

Quite a difference, eh?

I’m less resilient at the weekend, not just because those stones have been removed from my weeble-base, but because I know they have been removed. Small maybe-this-is-the-start-of-a-problem blips that feel easy to deal with during office hours are tricky, because I have no intermediate sources of support – I can cope on my own (with the help of my partner and twitter) or I can take myself to hospital. (111 always direct me to A&E because of my scary LTCs). The possibly-nothing-but-maybe-badness blips at the weekend take a toll on my mental health. Not least, I get frustrated that the day of the week makes such a difference given that my organs don’t respect a working-week pattern.

Every time a new situation comes up, my GP and specialists work with me to work out whether I could deal with that myself next time – with a focus on the fact that these things often happen at inconvenient times and in inconvenience places. We make a new stone together – a protocol and a back-up prescription, as needed. I’m more resilient for the future but there will still be other, new, unexpected knocks to come and sometimes I will still fall over.

This is the nature of the stones – they are co-created. By myself and my HCPs, or by society. We can go on resilience training, but we are at the mercy of the systems around us. Some of us are blessed with creative, co-operative HCPs. Some of us are vulnerable to austerity. When I’m unwell, or have a broken limb, I’m not able to drive. Recently our council ended the use of the school bus as a public bus. There is now no bus at all to our village. The nearest bus stop is six miles away. In April that bus stop is being cut and the nearest bus stop will be ten miles away. I like to run home from the bus – six miles or ten, I enjoy it. When I’m well. But if I’m only well-ish, or I’ve got a fracture, it’s not possible. If I need to take my laptop with me, so I can work between hospital appointments, I can’t run to the bus. When they cut our buses I became less resilient, regardless of all the self-knowledge I have about how important it is to me to be independently active and to squeeze work in on hospital days.

To me, resilience is having a surplus of stones and pebbles providing my stability. The stones and pebbles need to be independent, so that they don’t all come and go at the same time. There needs to be an excess so that on the days when I am less-resilient, I am still able to weeble my way through most of the buffeting.

Resilience begins with the ability to recognise what kinds of stones and pebbles might be needed. But the benefit only arises when that knowledge is manifested. More knowledge allows us to better prioritise, better argue, better negotiate, better advocate in the face of resistance, and knowledge about our knowledge-gaps is probably the most important of all. But it’s the actual wellies that keep your feet dry.

Don’t call yourself a patient, and don’t call me a diabetic

Recently I found myself arguing, in the space of a few days, that “everybody is a patient” is nonsense, only some of us should be granted the special status of “a patient”, and that nobody should be calling anybody “a diabetic”. On the surface these might seem to be contrary positions, so I spent a lot of dog-walking time thinking about the differences, as a lowly engineer, untrained in sociology and critical theory. Here is my very clumsy interpretation.

I believe that it’s wrong to noun people by adjectives that inevitably form a partial description of them. It’s (usually) fine to apply the adjective – you can refer to me as diabetic, Scottish, short… but don’t call me “a diabetic”, “a Scot”, “a shortie”.

Ah, but… came the response on twitter… how come it’s OK to call someone ‘a nurse’, or ‘a student’ – we noun people descriptively all the time, don’t we?

A nurse is a person who engages in the activities of nursing – a person who nurses. A student studies. A fishmonger mongers fish. Nouning people based on the activities they engage in is quite different from nouning them based on a property or characteristic. Continue reading

Diabetes week: Skin in the Game

If you’d asked me about diabetes a few years ago, I would probably have had an opinion. I’m not known for being short on opinions on any given subject, but it feels weird, now, knowing that I would have had something to say about it then. Back then, I didn’t have diabetes. I knew people who had it. I had made films about it – I interviewed the first athlete in the UK to have a continuous glucose monitor, which allowed him to become the first truly-competitive british marathon runner with Type-1 diabetes. But I didn’t have it.

Now I do have it, and I’m still a total noob at this diabetes thing. Sixteen months since I started insulin, I feel like I know very little. I’ve had a rapid education from the @OurDiabetes community on Twitter. I’m not short on facts, on physiological understanding, on sick-rules and carb-counting cheats. But there are people out there who have years of experience for every month that I have – folk who don’t just have 10,000 hours (I’ve got about 11,500 now myself) of diabetes experience, but have hundreds of thousands of hours of experience of dealing with diabetes.

Continue reading