What My Teeth Are Teaching Me About My Past & Politics

It’s been a while since I’ve blogged. And certainly, this blog will seem a bit more “off brand” than normal – because it’s about my Teeth.  Have I ever written about my teeth like this before? No, no I haven’t.

In fact, until around 9 months ago, I just didn’t even think about my teeth at all.

Here is a fun fact about me:  I am kind-of scared of the dentist. I know dentists are cool, great & amazingly smart and skilled people – but the environment & process of dental care FREAKS ME OUT.

I don’t know where this fear has come from. I think I learned it from my mom, who also hates going to the dentist and is probably worse than me at attending.  Until this year, my nan had to make all my dental appointments & take me because she knew I wouldn’t have done so myself.  Both my mom and I probably wouldn’t even be still registered with a dentist if it wasn’t for my nan. (Praise the nan!) And let me tell y’all, it’s HARD to get on a good NHS dentist list these days.

This is all interesting because whilst I’ve always known to brush my teeth 2 times a day, and “look after them” & reduce my acidic & sugar intakes and likes – I’ve just never appreciated the importance of what my oral health, care & history means on my general overall health.

Because I’ve grown up in a very precarious life – issues of not sure if money/food would make it to the end of the week, crappy food at school, things like stress from domestic violence & homelessness makes it so you don’t really pay attention to something that is just a given.  Because I’m genetically really lucky with my teeth (I had to have something good in these genes!), my teeth are all kinda naturally straight and normal looking. I’ve not even had any wisdom teeth yet. As such, because they’ve just been chill – i took them for granted whilst the super invasive stuff of my life took over.

I quickly learned from around age 13 that Coca-Cola was a great thing for energy. A natural night owl left me sleep-deprived, alongside having to be semi-aware for aggressive behaviour in the house.  It was cheaper than the food that would get me that same energy, so I could save my dinner money for other things I needed instead, or if there was no dinner money.  It was caffeinated & kept me full for quite a long time.  And so the semi-addiction to Coca-cola happened, and so did the true start of my poor teeth health.

My dentist at the time just never really communicated to/with me. He knew I wasn’t a fan of going to him and he could see what I was doing with my teeth – but never really broached the subject. Until I was around 18 when he told me that now I was an adult he could tell me that I was brushing away all the enamel from my teeth after consuming sugary drinks, so I should wait at least 2-3 hours before brushing. Why didn’t he tell me this literally 4 years earlier now that I had a mouth full of fillings?   So many questions & potential answers.

It was around the age of 17 that I started to feel a deep shame about my teeth. But it wasn’t strong enough yet & I didn’t understand it enough to pay too much attention to this feeling about it every time i brushed my teeth.

I started doing that, the waiting to brush my teeth, rather than giving up the Cola. Now I was a university student with no money either. Which was fine. My upbringing had prepared me for this lifestyle. Needs for new fillings became less with this new info of waiting to brush my teeth, but the dentist would opt for replacing old fillings if he couldn’t find new cavities.   But now the shame of all of this had really started to seep in.

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Occasionally, somehow, people’s teeth would come up at uni. “I’ve never had a filling!” many people would joyfully announce. Some people would say, with shame, how they had to have 1 or 2 fillings, but they only happened when they were younger! Never now!

 

I’d just pretend I hadn’t heard the convo quite often. For me, my teeth were half mental. Luckily all of the fillings were on my molars and pre-molars. But there was a shame I couldn’t explain about my oral health.  It was a bit like smoking, I guess. You know it’s bad for you – but you do it anyways. I felt that if I was brushing my teeth – and coca-cola helped me get through some super tough times with lack of money and energy / good food then it should have been fine. I mean, it was just a drink & I was doing what I was told with brushing. But what I hadn’t clocked around about now, was that my uni friends didn’t have any cavities or many, and were ultra proud of this status because they had much more secure home life & came from more money than me.  It was that middle class, affluent bubble again, that comes in many disguises. Still, I knew that I was responsible – ultimately – for my teeth. Poor background or not.

Over the past years, I have dramatically lowered my consumption of full-sugar drinks like Coke. I do a lot of a ZERO & MAX low calorie no sugar drinks now.  But they’re still carbonated & acidic.

 

The last time before this year that I went to the dentist was in 2016 after I had finished Radiotherapy. One of my back teeth had cracked (from a stress clenching that my dentist never told me i was doing ). I was eating some chocolate after my last case-discussion & a whole massive chip came off my tooth and  i was due to go to USA for the summer. No way did I want potential toothache in USA so I went to the dentist where he proceeded to fix my tooth & gave me more fillings/replaced them.

It was around April 2018 – and that same filling from 2016 fell out. I told myself I’d go to the dentist as soon as I had saved up the money.  I had saved up the money but I was still refusing in my mind to get it fixed.  It didn’t hurt or anything, just annoying when food would get stuck. I kept telling myself, I just don’t have the time. I was very reluctant to pay to feel super bad at the dentist from shame and fear. I left it, whilst I kept telling myself I’d do it soon.

In November last year, I got really sick. I was running 40+ C temp, but no one could figure out what the infection was.   I went to Budapest a few weeks later for my friends birthday weekend, whilst on long-course antibiotics. We were out in a ruin bar, and it was so cold it started to snow. I was drinking a Coke (i still felt gross so alcohol wasn’t for me).  It was there where I got the worlds worst ear ache/face pain. It was proper NEURALGIA. induced by me messing around my TMJ & the cold. The panic overcame me when i thought it could be my teeth. i sat there outside checking my teeth like a crazy person but they didn’t hurt. the gums looked fine. No signs or redness of abscesses. But the pain was INTENSE.

I let that face pain go on until Jan 2019 where it was getting more and more frequent and intense.

I made my 1st ever dentist appointment (remember that my nan had done them all until now) & it had been so long since I had been that my old dentist had retired.

in the meantime between the new appointment, I started googling potential causes of the pain & convinced myself that I had gum disease. It matched everything I had subconsciously told myself about my worth & my habits. I even got my affulent PHD mates to show me their gums – and even though I’m not dentist, i knew their oral health was better than mine.

I went to my appointment & I said to the new dentist that I was nervous (he was like “why it’s just a check-up?” & I was like *I know* but still dunno). I said I had the insane FACE pain, but none of my teeth hurt. I had convinced it was an upper wisdom tooth coming through, not anything to do with the lower filling-less molar as the pain wasn’t no where near my lower jaw. He checked it all out & told me it wasn’t the wisdom tooth  but he might need to remove the fillingless tooth if  he couldn’t fix it.

(I’m leaving out the part where he questioned my dental history accuracy due to the previous dentist filling out my dental record inaccurately?! And made out that I had done dental elsewhere – what a trust exercise!?) 

 

A potential tooth removed.  I ask if it would hurt, he said the no-dental procedure should hurt. LOL LOL LOL. He said I would need a long appointment. I booked it & paid, relieved that I didn’t have gum disease.

On the day of the filling, he told me he couldn’t do it as the tooth was “far too gone”. He said he could take it out now. He couldn’t even do root canal because something had grown? I asked him if i had caused for it to get like this because i had waited so long.  He was a nice dentist though and said it wasn’t my fault. Instantly trying to help me unshame myself.

 

(i do think it was because I did leave it too long, but it was nice of him to not blame me).   OK i thought, I’m sure i can let him remove this tooth, RIGHT NOW. He was really good. He explained everything, and talked me through it all. I never knew until now that I actually had a choice in dental treatment. my previous dentist would just *do it* No real discussion.

There’s a funny story in this tooth removal process – like the fact that I had gone to this appointment on my bike- apparently you can’t ride a bike after surgery? who knew! and i wanted to go straight to work- to lecture. but i actually couldn’t talk. good times.

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But a root got left behind. The dentist let me keep my tooth. I don’t know why i said yes like a weirdo – but I guess I thought that since I had paid £60, i might as well keep it as a reminder.  He made me come back to him for 2 follow up appointments, which i thought was very good.

 

In the meantime, I started researching tooth stuff. And I became shook about the link between social inequality and ACES and oral health & loss of teeth.

Current dental research focuses on health conditions such as diabetes and lung disease that can be risk factors for oral health.

Haena Lee, a postdoctoral researcher at the Institute for Social Research at the University of Michigan, assessed the impact of adverse childhood events on oral health—specifically, total tooth loss—later in life. These events included childhood trauma, abuse, and, to a lesser extent, smoking.

“The significant effects of these adverse experiences during childhood on oral health are persistent over and above diabetes and lung disease, which are known to be correlates of poor oral health,” Lee says.

Lee drew data from the 2012 Health and Retirement Study, a nationally representative longitudinal study of older adults and their spouses in the United States. The study includes a core survey collected every two years and a supplemental survey every off year. In 2015, the supplemental survey asked detailed information about childhood family history.

Lee derived the participants’ oral health information from the 2012 HRS core survey and their childhood experiences, adult educational attainment, and poverty status from previous HRS surveys and the 2015 supplemental survey.

Using this data, she investigated three models of life course research: the sensitive period, defined as the time in a person’s life during which events have the most impact on his or her development; the accumulation model, which examines the effect of the accumulation of events over the life course; and the social mobility model, which examines the change in a person’s socioeconomic status during that person’s life.

Conclusion? Failing oral health in older adults, especially total tooth loss, may have its roots in adverse experiences such as childhood trauma, abuse, and low educational attainment. Findings also suggest that oral health in later life may be more influenced by accumulation of adversity rather than changes in social and economic position over the life course.

Read more about this incredible (american) study here: https://onlinelibrary.wiley.com/doi/abs/10.1111/cdoe.12463

 

After i had that tooth out & did this research – and saw why i felt shame for my teeth. They’re a sign of all the shit I’ve had to endure- abuse, homelessness, poverty, massive amount of stress and chronic illness. – it’s a record dug deep into my bones, and my shorted DNA now – that makes it look like I’m thick or that just don’t give a shit. And that my dentist of 15 years just didn’t really care about to ask or tell me stuff.

The trauma I’ve endured means I *REALLY* don’t like people looking in any of my holes where I have little control or can’t see. So that’s probably why I’m bad at smear uptakes too.  So it’ has helped to tell the new dentist I DO NOT LIKE this. And he explains everything now. (I also told my dr I wasn’t a fan of smears & she made them better too)

AFter the tooth out, I have become a bit obsessed about trying to look after my teeth better than I have ever done in the past. Plus, I have a bit of money that i can spend on this stuff now – where as 2 years ago I couldn’t even buy a general food shop. 

(i’m still drinking carbonated drinks – ooooops) But I bought my first ever supersonic toothbrush. WOW. Here’s another reason why poor people tend not to have brushed their teeth correctly – electric toothbrushes are INSANE & you can feel the difference.  And my teeth LOOK whiter!!! FOR REALS.  Now of course, we know that electric toothbrushes are obvs a defining difference between folks with flexible incomes and the poor (for those of us on a megabudget but enough to buy a new electric toothbrush – this is an amazing tooth brush for £21 https://www.amazon.co.uk/Electric-Toothbrush-Fairywill-Charged-Rechargeable/dp/B07M9ML7XP/ref=sr_1_3_sspa?keywords=sonic+toothbrush&qid=1563721336&s=gateway&sr=8-3-spons&psc=1 )

But this toothbrush came with instructions of how to brush my teeth & it’s timed. I thought I was brushing my teeth for 2 mins. Turns out I really wasn’t. And I didn’t know of the correct technique? 

I started really routinely flossing my teeth, but I had to watch youtube videos to help me learn how to do it properly?! Turns out I only know how to floss from TV & movies – and they just slosh some thread between your teeth. Which is alright – but it’s not the good/correct way to floss!? WHO KNEW? Why has this never been shown to me before? Apparently, you’re supposed to almost wrap the floss around each side of your teeth. Makes sense now I think about it!  I found Dental Hygiene with Whitney (Teeth Tooth Girl) – who is pretty amazing. She makes dental health look cool, fun and easy. Here’s a video of atalk through a dental cleaning (in USA): https://www.youtube.com/watch?v=uTiC467dwUM&list=FL3F7cPjI9Wp7P1uf9RTl8JQ&index=9&t=0s 

It’s wild to think I’m having to find how to do  this stuff ONLINE – MANY years later.

This mouthwash is gross but it really makes your gums amazing: https://www.corsodyl.co.uk/products/corsodyl/mouthwash/ And now I can eat ice-cream by biting into it!? I’ve not ever been able to do this for as long as I can remember without it hurting.

I usually chase it with it’s nicer tasting mouthwash: https://www.corsodyl.co.uk/products/mouthwash/ (fresh mint)

Though I’ve been using this recently as it was on offer and it’s like setting your moth ALIGHT lol. https://www.listerine.co.uk/products/fresh-breath/listerine-total-care wicked fresh breath though.

My dentist helpfully showed me this lil baby cute tooth to help brush hard to reach areas too : https://www.amazon.co.uk/Wisdom-Interspace-Super-Slim/dp/B01NB08GMX/ref=asc_df_B01NB08GMX/?tag=googshopuk-21&linkCode=df0&hvadid=310836173466&hvpos=1o2&hvnetw=g&hvrand=11693902512502109974&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9046280&hvtargid=aud-545671390501:pla-563452080186&psc=1

This past week, I got to see a MAXFAX doctor for the root of my tooth. And what i found out is another blog post for anyone struggling with facepain, TMJ, ear ache & chronic headaches. So come back for that.

BUT why did I write this post?

In my research I learned that Kids, after virus’ in the UK, the 2nd highest reason for hospital admission is due to tooth decay.  I’ve just had to find out how to properly look after my teeth, like technique, materials, length, etc – myself because no one was able to actively show me when i was growing up. Not even my dentist.

I’m working in Public Health & lots of my contracts tend to be about healthy active lifestyles – and yet i’ve come across very little in my research and events that I attend about this HUGE lack of compassionate & fun dental public health care. When i looked into the funding of it, it’s basically VERY VERY small. This isn’t fair & it isn’t right.

I feel ashamed about my oral health and there’s so many people out there like me. But i just wanted to say – don’t feel bad about it. It’s happened now,  I can’t help all the shit situations I have been in. But it doesn’t mean everything else around us has to pretend our painful lives don’t exist. lets get better going forwards. Lets take the stigma out of this stuff, because we’re not doing a very good job in the first place in ensuring people have the right knowledge to begin with, they can’t access to some of the better tools to help do it well and dental practices & research needs to be better at assessing a more holistic approach as to why people are doing things which might be bad for them, and help them with it. Rather than pretending it’s not there or the person just doesn’t care.

If you got to the bottom  of this post, you probably needed to hear this too.

Let’s change make dental public health higher up on the agenda

 

 

 

Shame, Gratitude, (health) Care & Resilience: Working in Art & in Research

Shame. It’s a shameful thing.  To feel ashamed. It makes you feels weak. It feels like you’re kind of worthless. The other day, my GP shamed me. He told me that I just “need to suck it up & live with it”. (it being bad-ass headaches/migraines/face/shoulder pain) I’m not sure he meant to, but he did. I wasn’t even there for that. He tried to quickly move on – but it hung in the air & it is now burnt into my mind ever since. I keep replaying the moment inside my head of all the things I *wished* I had said in response to him. To call him out. But I stumbled over my words and I itched my head as I usually do when I feel socially inept and at a loss of words as all of the emotion came over me at once.

This moment, which I had gone for antibiotics for a chest infection (which i got!),  all came down to him reading some clinic notes that the physio had written. She had said that I take (over the counter) codeine about twice a month  for a 5-year chronic headache & INTENSE neck/face pain, but only when its pain scale 8+ & it’s grinding me down. And it’s true.   The neurologist prescribed me stuff for it 3 years ago – but the GP refused to keep on prescribing it. we tailored the drugs off – and now I just live in pain. I get it. I understand why he doesn’t want me on these drugs. It’s chronic pain, it’s probs a bit psychosomatic – but i do have shit wrong with me that would actually give me chronic headaches like hypercalcemia that gets so high sometimes I have to be hospitalized.  And also like, migraines are a real thing! But he doesn’t see that. And again, I do  it get the “no drugs thing”. That’s why I have adapted my own coping systems. I know stress makes it worse, Physio helps my neck & shoulder & gives me really good relief for a decent amount of time, and I know I need to sleep-in at weekends to give my body *Something* to building itself back up. I know the GP won’t give me shit for it – so I take the odd over the counter pain relief? So what!?  If he wants control over the stuff I am taking – then he should offer the support. But he doesn’t – so, I guess that’s structural iatrogenesis for you.

I have to take the pain relief when the pain grinds me down so much that I feel COMPLETELY worthless – like the pain makes all my left side of face feel numb and sometimes I can’t actually get language out. It’s embarrassing. My job is about communication – and sometimes i just can’t communicate properly with people cuz the headache/face numbness is so bad i loose my ability to grasp the correct word – or know how to spell it? It’s a weird sensation. It’s like having the worlds slowest seizure. But it goes on FOR DAYS. WEEKS. Even months if it’s SUPER bad like it was back in the radiotherapy training days.  It literally makes me feel like I want to kill myself – because anything is better than not feeling like you’re alive. I joke about this with friends at work. They laugh but pull me up on it. “You’re not serious though, are you?” they say. I just laugh and & say “i don’t know” because honestly on those days, i just – don’t know.  We get back to typing on our laptops and pretend we’ve not really exchanged this odd truth because it doesn’t sit well with who i am.  When the pain is manageable – i’m like the chillest, generally happiest person you’ve met that day.

The GP – a dude who I really respect & admire – made me feel like *proper* shit by shaming me like that (again esp when I didn’t bring it up!). I carry the shame around with me all the time. It weighs me down, and the dirty secret of mine.  I don’t need to hear to suck it up from someone who is supposed to at least be pretending to help.  So I was like, what’s even the point, right?  And It’s not the 1st time he’s shamed me. I can’t blame him directly tho. Healthcare is historically built upon shaming women (Especially) .

I’ve been making my medical shames into comics (this 1 isn’t finished yet). Maybe one day, i’ll give them to my GP.

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So what’s this shame gotta do with everything else? Well, this is the thing. I know that shame is the opposite of art.

When you live inside of your shame, everything you see is inadequate and embarrassing. The pain you can’t seem to get rid of.  A lifetime of traveling and having adventures and not being tethered to long-term commitments looks empty and pathetic and foolish, through the lens of shame. You haven’t found a partner. Your face is aging. Your body will only grow weaker. Your mind is less elastic. Your time is running out. Shame turns every emotion into the manifestation of some personality flaw, every casual choice into a giant mistake, every small blunder into a moral failure. Shame means that you’re damned and you’ve accomplished nothing and it’s all downhill from here.

Working in art and academia/research kind of makes it super easy to fall into shame. The way these worlds work – defaultly – can make you feel pretty inadequate at times. I mean, anyone who has received the raft of reviewer #2 will know what I mean.

Shame creates these imaginary worlds inside our heads. This haunted house that I have created is forged from my shame. No one else can see it, I keep trying to describe it to them. I find ways to say, “You don’t want any part of this mess. I’m mediocre, stupid/boring, and poor. Do yourself a favour and leave me behind.” Sometimes I think it’s because I want to be left behind, though. That way, no one bears witness to what I’ve become.

I’ve gotten super lucky recently though when it has come to work, somehow. I’ve been blessed with an incredible opportunity to do a commission for Yorkshire Visual Arts Network (YVAN) – on creating a work based on snapshots of working in Yorkshire and Humberside as an artist.   And I decided I’d look at this iffy word Resilience.  It absolutely does my head-in, does that word.  It’s a new buzzword. And it gets banged around in scenarios where people are in really stressful situations: an overstretched NHS, an underfunded school, understaffed university, a over-stretched and increasing demand public sector. The reasons why people are stressed & burnt out & things are taking longer *isn’t* the underfunding – no – people just need to be *more* resilent. Here this is the placing the structural injustices onto individuals – and it turn it shames them too.

The North, traditionally and currently, gets less funding than the south. But – it’s cool because WE ARE RESILIENT.

Over the past few weeks I have been digging down deep across various areas: Sheffield, Doncaster – soon Hull and Withernsea. A bit of Huddersfield. I’ve been taking documentation, talking to people. About labour, about art, about making, about worth/value/time.

But I am left more inspired than I first thought I would be.  Every single conversation has ended up about being and providing some sort of care. I am refreshed. This wasn’t what I was expecting to find. I had chosen these specific people because I knew they were doing something special, and was responding to these structures that build shame around us all. They are responding with a resilence built around care.

Over the past few decades the individual, the self, has been at the center. But I’m finding people who are leading us toward a culture that puts relationships at the center. They ask us to measure our lives by the quality of our attachments, to see that life is a qualitative endeavor, not a quantitative one. They ask us to see others at their full depths, and not just as a stereotype, and to have the courage to lead with vulnerability. These  people are leading us into a new culture. Culture change happens when a small group of people find a better way to live and the rest of us should copy them.

I am excited to share this new body of work (still in the process of being made) with you – but the website will be shared with y’all soon.

All of this has made me see that we all need to discard some of this shame that we’re carrying around all the time. But even if we can’t cast off all our shame that quickly, through the lens of art, shame can become valuable.

When you’re curious about your shame instead of afraid of it, you can see the true texture of the day and the richness of the moment, with all of its flaws. You can run your hands along your own self-defeating edges until you get a splinter, and you can pull the splinter out and stare at it and consider it. When you face your shame with an open heart, you’re on a path to art, on a path to finding joy and misery and fear and hope in the folds of your day.

Instead of thinking what needs fixing? we need to be here instead. We can build a new kind of existence, one that feels small and flawed and honest, but each day we can accumulate a kind of treasure that doesn’t disappear.  A reminder that you are alive. And you’re worthy and valued and seen. Chronic pain, citations, published journal articles, bad reviews and all.

Expect anything worthwhile to take a lot of time

Yesterday I went to the Drawing Matters Symposium in York. It was a day of inspiring talks and presentations, all grappling with drawing and its pros and cons. I even met a couple of healthcare professionals (a nurse & a physio) using drawing in their PHDs – as a critical tool too, not just a “wellbeing” tool*

There was a particularly interesting talk from an educator about drawings role in primary education, and how a lack of teachers understanding of drawing and time to do it/teach it (all documented in Ofsted reviews every 3 years) is affecting how people later on in life construct and evaluate knowledge. This then, of course, systemically affects every area we work in – from government policies, to leadership, to how things are designed.

They also showed how drawing also helps bilingual kids learn english. So drawing can help bridge across two different languages, two different paradigms. Enhance collaboration and share practices!

But the knowledge thing got me thinking about the healthcare system.

I’ve been trying to make things to help showcase people’s work within radiotherapy & beyond and I’ve been *secretly* developing  a framework/workshops to teach healthcare students (maybe even staff) to be and think creatively.
The workshops are designed to be facilitate hands-on activities and discussion designed to build 4 essential creative muscles:

  1. Seeing connections between disparate concepts
  2. Developing an openness to new ideas
  3. Building resilience through experimentation
  4. Authentic reflection

These 4 things goes beyond what most people think of when we say creativity (no, it’s not just drawing, and it’s not just being “different”). In business, the creative mindset is highly sought-after because in this time of incredible uncertainty and rapid change, we need agile thinkers who can recognize patterns and interesting adjacencies, who naturally come up with person centred solutions not rigid-1-fits all master plans, and who are comfortable conducting rapid experiments to learn quickly. But it’s not as much appreciated  in healthcare, despite needing the same kind of things as described above.

But alas,  both healthcare and creativity is complicated.

For years, researchers have studied the “bias against creativity” in the workplace. University of Pennsylvania researchers coined this phrase for the tendency of creative ideas – and the people who espouse them – to be systematically diminished, disparaged, and discredited. This is interesting stuff. I’ve personally experienced it at school, across many places I’ve worked, including within the healthcare system too.

In recent work from Stanford Institute for Economic Policy Research, economists took a novel approach to innovation research by matching tax data to patent grants and applications for almost two decades in the US. They found that children of parents in the top 1% of the income distribution were “ten times more likely to become inventors than those in the bottom 50%.” This is significant, but perhaps not that surprising. The fact that you’re more likely to be successful if your parents have money isn’t the classical narrative of the American dream, but we know it’s true. This data is reproduced across the UK too.

The real surprise in the research was that invention was not correlated with creative ability. Instead, the degree of successful invention was more closely tied to environmental factors shaped by race, class and gender. The conditions children were exposed to at a young age in their neighborhoods and schools were the dominant factor in predicting future success in innovation. In other words, if children didn’t see members of their family or community engaging in non-traditional, innovative pursuits, the financial barriers related to access to opportunity were virtually impossible to beat. It didn’t matter how naturally talented someone was if they had nothing to model.

This makes me think back to the healthcare system and the transformational leadership role and HCP ability to enact change – whatever band/level/experience they have.

“Creativity” may not be the magic bullet – but creative people are. We know that intentionally or not, we are teaching the next generation how to be good foot soldiers, but not independent thinkers. More confoundingly, we know that the things we design (whether policies, products, systems, services, pathways, leaflets, etc) we will use in the future to communicate and convene, work and drive and govern will be built by a cosseted minority who have great access, but may not have the greatest ideas. And even if they do, they will not represent the diversity that they could have.

The experience of engaging in the creative process is profoundly transformative for people, especially young people. Moreover, it’s something where each of us can have outsized impact, just by simply being present.

So how do we do this?

First step: embed it back into education and learning.

Organization design – the attempt to structure systems to produce the outcomes we want – has been an established field for decades and healthcare is an amazing example of this. But here’s the thing – if you step back a bit, putting the two words “organization” and “design” next to each other is actually quite contradictory — the historical rigidity of a typical organization, next to the inherent complexity of the humans in that system, combined with the fluidity of design.

The healthcare paradigm is a tricky thing to navigate. It’s so ensteeped and rigid in empirical  data and conservative methods that it’s hard to move things. Each coupling reveals a tension between chaos and structure; linearity and the non-linear; closed and open systems.  Teaching people to be flexible and open – and fun – will show them their potential and feel more confident is being more critical and open about their world and collaboration around them.

Step 2: We need to Challenge the world around us.

At the 99U Conference, Liz Jackson, founder of the Inclusive Fashion + Design Collective said: “You never see a person on a cycling sign. You see one on a wheelchair sign. You’re saying you can’t use that object unless you are that person,” as she strode the stage with the aid of a cane. “We are disabled not by our bodies but by the world around us. It is a social construct. Disability is nothing more than a brand, the world’s ugliest brand.”

The stuff we ignore, or don’t try and change, creates our world – makes it harder for us to do our jobs, our lives and our patients lives. So by giving people the tools to critically think, to be open, to try stuff, we can literally make a difference. Equally, to repress what makes us unique is to artificially constrain all the potential we have to offer. 

Step 3: Learning different ways of thinking to see from different perspectives

This is where a creative education works. Sometimes we all need to step back—be an artist or a healthcare manager— to find the most appropriate methods or  solutions for the problems. You don’t have to do everything yourself, and it doesn’t always have to be a questionnaire or RCT.   Equally, we need to  increase awareness of our biases (which we have MANY in healthcare) and begin to advocate for change, Norregaard recommends creating a space with your team where it’s okay to talk through our biases.

Step 4: Believe in the learning loop.

We teach reflection well in healthcare, but I’d argue not in a way that’s super conducive to working life and transformation. We know that hospital Trusts that are transparent and have an open culture to mistakes, make less big mistakes overall, and have higher quality care outcomes. This isn’t by mistake. Reflecting upon what you do, enables you to work out where things can be better. But the trick is about making reflection natural, critical, authentic – actually empowering and enjoyable and  not like a chore, it’s tick box excerise for just your license. Creative thinking does this.

 

However, even with all of this – we know culture doesn’t change over night and there will always be people high-up that can not see the benefit in such things. Expect anything worthwhile to take a lot of time, but in the meantime – the artist in me has taught me that if you don’t or can’t get a seat at the table – just bring a folding chair.

Having ideals is like having a compass that always points to your heart instead of your brain. If anybody wants to keep creating they have to be about change. Likewise, if anybody wants to be about change, they need to create.

 

 

(*side note: I believe the arts are incredibly important in theraputics however that’s a whole different debate). 

Taming the beast in a complex system

Last week I had my first medium-plus allergic reaction to Shellfish (I think). I didn’t even eat it, I just ate rice that had been cooked with it. The kicker is, I don’t even LIKE Shellfish.

Literally within an hour my face swelled up (not like Hitch style but pretty bad never the less) & my throat became ridiculously itchy & sore, and I became wheezy like when you have an asthma attack. Needless to say, i wasn’t best impressed with this new hyper-sensitive immune system of mine. I hadn’t been to see a doctor in literally months, and i was hoping to keep it that way. Damn.

I had to go to the urgent care center, where I was given steroids, more anti-histamines, and a GP appointment. My GP prescribed me my first EpiPen, and a referral to an immunologist.

Today I picked up my EpiPen. I’ve never seen one up close before.

My GP gave me strict instructions about how to use it, & that I can see the practice nurse to show me how, and that I should call an ambulance if i use it & that I’ll always have to carry it and anti-histamines with me for the rest of my life now “just incase”.

But what struck me was the design of it.

It’s really quite big! And I wonder how smaller people (kids etc) carry their EpiPens about if they don’t bring a backpack? Its design is a bit impractical. They’re reliable, sure. They’ll buy a patient who’s in the midst of a severe allergic reaction a few crucial minutes to make their way to the hospital.

But they’re also bulky. Their epinephrine solution isn’t particularly shelf-stable, and will easily degrade in temperatures that are too low or too high (too cold in a bag in the winter? too hot in a jeans pocket perhaps?) and its expiry date on mine is in about a years time. So not very long.

I had a quick google to see if there was other designs available. In America, there was 100s of news articles on the esculating price tag: apparently a pack of two EpiPens now lists for $608 in the USA. (I checked the cost for the NHS & it’s £23.99 for 1 single dose).

This revealed that there’s a design patent on it until 2025. One company owns the monopoly of the EpiPen. & because of this, the design flaws of it for the user, are the profit for company. If it’s too big to carry, you’re more likely to buy more (in the US anyways) to store in other places or for back-ups.

Accidental injections seem pretty common, and instructions are relatively simple, but, adrenaline is invariably used in highly stressful situations, in order to treat a severe allergic reaction. As the auto-injector was originally designed for use in the military, the users were well trained to manage in these circumstances and the user group generally consisted of healthy adult males. Nowadays the devices are given to people of all ages, and with children suffering more from anaphylaxis than any other age group, the device has to be appropriate for a wide range of user groups.

On the recent BBC Radio 4 programme Dr Boyle highlighted how having to respond to a stressful situation can affect the person administering the drug. In his trial, more than half of the intensively trained parents were unable to correctly operate the devices in an emergency.

He cited some of the common errors associated with auto-injectors: holding them the wrong way round, failing to remove the safety cap and not pressing hard enough. They also discussed how little research into the efficacy of the device has been done because studies can cause severe allergic reactions in test subjects, plus real life situations are likely to occur in public and not in clinical settings. All of these issues have resulted in little drive to improve the devices over the last 50 years, leaving key issues unaddressed. (1)

The very fact that the EpiPen has been dominant for so long makes it hard for challengers to come in with a radically different design.

So, what does all of this mean? Well… there’s a HUGE Challenge for someone to make a MASSIVE difference to 1,000’s & 1,000’s of people, but also challenging in being able to design everything that is needed into an EpiPen (engineering, plastics, drugs, function, deisgn, safety etc) that’s life-style-functional & more cost effective long-term (shelf-life etc).

It highlights that instead of trying to carve out a focused segment of healthcare or a specific specialty of design, we should be re-framing these conversations about healthcare improvement around a set of challenges.

No one person or one organization can take on the whole system, but collectively we can make significant, people-centered change happen. I wrote on my blog last night about ‘critical making‘ – If there is one element that is sorely lacking in healthcare, it’s the ability to prototype, to critically make.

It can seem like a beast of a system can healthcare: its big, complex, and delivering on one of the most complex industries. But I’m trying to keep practicing at staying awake and trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

 

Who knew some Shellfish and an EpiPen  experience would be showing me and putting into practice that listening can tell you who you are. That paying attention can give us the change and the meaning that we so badly seek.

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(1) BBC Radio 4, Inside Health, Wed 7 October 2015http://www.bbc.co.uk/programmes/b06flmg7

other readings:
Adrenaline auto-injector advice for patients, UK Gov.ukhttps://www.gov.uk/…/adrenaline-auto-injector-advice-for-pa…

Adrenaline auto-injectors, European Medicines Agencyhttp://www.ema.europa.eu/ema/index.jsp…

How Mylan tried to keep Teva from selling a generic EpiPenhttps://www.statnews.com/…/2016/08/31/mylan-teva-generic-e…/

 

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Every transformation that we are witness to changes the world, & this in turn, changes us: 3.5 weeks of lessons in PhD-kingdom

It’s only been basically 3.5 weeks of being an enrolled PhD student. And what is it teaching me?

Well, I’m being schooled,  once again.

I keep being met with questions of what I’ve done – and I try to justify my lack of products with: “I’ve been doing it for 3 weeks?”… but people want something more concrete, I guess.

At first people  told me I should be reading, and reading lots! Getting together my bibliography. That’s what I should be doing for the first weeks they said. So my first week, I diligently sat in the library and looked up interesting books and downloaded paper after paper from the library gateway on creative methodologies and healthcarec(& spent a hefty time on twitter). Then the second week rolled around,  really quickly I might just add, & other people started saying that I really should focus on the making art bit because, you know, it is a practice led PhD after all and I don’t want to get to christmas and have nothing to show for it. Too right. So I started making some really terrible pieces of parts of work/thinking process (you know, it always starts off that way, so not too worried at this stage). Then week 3 was met with that I *really* should be focusing pretty much on the REF1. which has to be submitted in literally 6 weeks now. Scary AF.

So I’ve sat and stared at my REF1 form on word for about a week now, feeling the pure weight of re-framing, of patching up the holes of my research proposal, maybe even changing it slightly, of finding out an extensive and integral and good literature list.  Of finding artists to reference and draw from, of figuring out where I sit – art? design? healthcare? sociology? anthropology? (it’s obviously all of those things, but hot damn) —  trying to get my head around my potential methodologies and the pitfalls that they entail, and figuring out how long everything *should* take me to create a plan of sorts, and lets not even talk about my issues of ethics – and my potential plans in place whilst I endure a long ethics procedure — all of this needs to fit into 1000 words. No joke. And I have insane imposter syndrome that it’s not even funny.

My head of studies told me I needed to take a few weeks to just play, to knock down these boundaries I’ve learnt/built up during the past few years. To reflect upon all of the things I’ve experienced, and frame them. To see the tensions that lie within the frameworks of healthcare methodologies and artistic/creative methodologies – how these paradigms work. How they oppress and close discussion or the opposite or even offer more opportunity.  I wrote quite a few reflections, maybe I’ll share some on here in due time.

I applied with a proposal for my first symposium talk in London(combining art and healthcare together – more info soon) and got it, showed folks how to use drawing as a research and reflective tool at the IPE conference at SHU, and I’ve got the radiotherapy annual conference in Jan to present my other design research from earlier this year. All of which I’ve started to pull together over the past 3 weeks too.

I’ve drank a lot of tea, I’ve sat and stared at the walls in my studio. I’ve moved into my city center apartment/flat.

But mostly what all of this has taught me is that when the ground shifts, the next chapter begins. Here’s what I’ve been thinking and learning and trying to tell people when they’re super confused about why I’m using artistic practice-led work to create healthcare change.

Making things can expand one’s understanding of what it means to be human. Finding the vehicles for exploring the edges of your experiences can be really, really scary but it’s a great way of transforming thinking into practice. Change is inevitable, adaptation is optional.

Every transformation that we are witness to changes the world, and in turn, changes us.

‘Making’ is a process. In comes from ‘doing’. Doing something. ‘Making’ can bring you face to face with your own agency. ‘Making’ has some of the qualities of an echo. It can travel in space and time and come back to you in the form of a feedback loop.   It helps to make something that you don’t necessarily understand. And even if you think you understand what you are making, the act of making it will change your understanding of it and you will feel yourself get bigger.

I have been exploring my own tracings, teachings, drawings, wanderings and wonderings, feelings, thinkings, questionings and assumptions ever since to better see what can happen when something opens and something else falls… out. And like all ‘critical making,’ it attempts to create a context to make tangible some of the possibilities that can drive passion and engage spirit by striving to go beyond the things we know and towards our own reckoning.

‘Critical making’ can remind us that even when we act alone—as an artist, as a designer, as a healthcare professional, or as a hermit—in isolation, we are part of a larger community.

Seeing is a reflexive process, and like an echo it can find its way back to you. Of course, it all depends upon listening. Everything depends on listening. Listening is different from hearing. Hearing can tell you which way to go. Listening can tell you who you are.

I’m having to re-learn to be diligent, and teaching myself to be better with my time, and my work. I’m practicing at staying awake and  trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

I said that i was going to take every single opportunity I get as a PhD student. And I’ve attended nearly 75% of everything open to me, talk wise within my free time.

I plan on paying attention to everything. And remembering what Linda Sikora said when I feel crazily over-whelmed with all of the above.

She says that, “It’s more important to keep paying attention and to follow your attention wherever it goes, than it is to think about meaning and content, because meaning and content come from paying attention to the world.”

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Launching A Radiotherapy Story

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About a year ago, I saw a really cool website from Canada about the Faces of Healthcare.

And I thought, wouldn’t it be cool to have something like this for radiotherapy, and the surrounding services (which is essentially pretty much EVERYTHING in the NHS). Oncology is very much one of the most inter-disciplinary areas within healthcare, ever. From dietitians, counsellors, all different types of doctors, dementia care, mental health, social workers, GPs, ambulance drivers, nurses, students, volunteers, etc — it’s endless! Trying to seamlessly work together to provide the best patient care and experience.

It is for this exact reason why I believe we should celebrate our profession and our patients and their carers and loved ones, and for every single person who is involved within the NHS. Because without them, we’d be a bit lost.

The receptionists who make sure patients get to see the people they need to see. The porters who take the patients to Boots and reading every single sandwich ingredients to the patient. To the volunteers who run Bridge Clinic, and provide unlimited biscuits. To the student who helps someone on and off the toilet… it’s literally endless.

So many people don’t know about radiotherapy. So many patients find the process quite anxiety enhancing due to the lack of personable, friendly, understandable and in-date information online coming up to their treatment.

And as I’ve gone through my training I’ve seen some truly compassionate stuff and heard some amazing stories – of all types. The stories from patients that have stuck with staff, the stories that made staff go into the profession and stay when things have been or become tough.

Patients have been some of my best teachers throughout my training, but some of those lessons have been hard.

And I’d love to share these stories with you. Because everyone’s story deserves to be heard. And i hope through reconstructing these narratives together, we can empower our experiences.

A Radiotherapy Story is photo-documentary on kindness and trauma, on team-working, on suffering and on truly living. On being part of something bigger than yourself.

We want to share with you the stories of these people, of the NHS, to celebrate the pinnacle of humanity and kindness. Of life and death.  I hope you’ll enjoy what we’ve made.

http://www.radiotherapystory.com will be launched in 2 weeks time.

And if you’ve got a story in healthcare that you’d love to share, let us know! Contact: smizz at smizz@sarahsmizz.com or @smizz on twitter.

The project is run by me and Harri Slater.

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Break it down, build it up, make it better around the world.

I’m now officially in this incredible and super lucky position of sitting across multiple disciplines all at the same time; i straddle across being an artist, a designer, a healthcare professional, a researcher and a patient.  It’s super exciting but it’s also incredibly scary – even overwhelming.

I’m kind of unique in this respect.  There’s not that many of us hybrids rocking around in healthcare, or who are “out” about it,  but I think that’s going to change dramatically over the next few years.  Healthcare is building up towards a renewal, globally, to change from being just this service where you get things sort of fixed – and that’s it – discharged.  But it’s going to change into this service that is adapted to personal needs; both preventative and continuous care – in different models.  That the healthcare education model will provide art & design training in it too – that it’s not just all numbers and science – &  proper useful & enjoyable reflective practice training. It’s going to experience a (probably very slow but) beautiful renaissance – where things will be designed purposely with and for the user; whether that be the patient/citizen or the healthcare professional, using stories/narrative and lived experience and critical reflection in the process. That healthcare professionals have the tools to design things themselves too.

Whilst I am obviously very passionate about combining all of this together I attended a talk  last week by Elizabeth (Lizzy) Scott on the Femcare information strategy (Lizzy is radiotherapist leading this project) that’s undergoing within the radiotherapy department I train at.  I originally attended due to my passion for better patient information, but what this talk showed me was exactly the reason why it’s so incredibly important to think not just in terms of information; but the design and presentation of information and equipment is also equally as and incredibly  important in being able to enhance quality of life and treatment experience and compliance.

This Femcare information is aimed at patients who have had a radical course of radiotherapy treatment to the pelvic region. The side-effects of this treatment can have massive quality of life issues in the future for these patients, especially when it comes to their sex-life.

I believe, in general, we don’t talk enough about the effect of cancer on peoples’ sex lives and relationships, and their relationship with their body. Change goes deeper than the physical. It’s emotional. It’s psychological. It’s part of who you are. We know embracing the changes in intimacy can be one of the most challenging parts of feeling ‘you’ again. Butt issues like these can be – due to the very British nature of us – difficult to broach the subject – we may just brush it off – downplay it, really don’t want to talk about and feel embarrassed. We maybe really open to discuss it. But everyone is different and we need a strategy to reflect this.

The correct information early on is incredibly important in being able to facilitate better quality of life later on for these patients.  In the talk, we were given some leaflets – which had some pretty intense diagrams of how to use a clinical dilator, and of course a dry pastel rendition of some flowers  on the front to represent femininity? – how imaginative.

If you’re able to move past this leaflet, what comes next is the the dilators we provide – which are so clinical and intimidating and cold – as pictured below:

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I can’t imagine what a user group would say about using these after treatment – whilst I can’t stress enough that they’re extremely very valid and very important – and i’m glad we do provide them rather than nothing. It makes me think the people who designed them didn’t really *think* about the user – just the use of them.

Lizzy discussed how she – too – wanted to redesign the Femcare strategy,  including the leaflet and had done some research into finding better dilators that may be less intimidating but do the job. Her efforts were rewarded when she found http://pleasuresolutions.co.uk/  – a  company with an ambition to help people reconnect and explore new realities after cancer, sexually. Whose products are specifically designed with clinicians and patients and with Japanese production as pictured below (made from a gentle Unique SoftTouch material with anti-dust coating

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I’ve never seen such an obvious need for redesign and rethinking with empathy and the end-user than in this case.

Imagine what the change in outcomes and perceptions would be if we in the NHS used the latter, widely, in practice. I suspect it would only be much more positive with more compliance.

What all this reveals to me is that we – as HCP and as artists/designers/thinkers/researchers – should use our superpowers of empathy and prototyping. Underlying both of these is a commitment to learning — learning about people’s needs, learning through experimentation and trial, and arriving at a solution through  discovery.

Creativity isn’t being used to its full potential in healthcare today. There are many other creative disciplines that have a critical role to play too. It is critical to create the conditions in the healthcare industry for designers/artists — along with healthcare ‘natives’ — to put the disciplines of empathy and prototyping into action.

When sharing my thoughts with the department (when I was asked to, lol) I said we make children’s hospitals all more accessible and aesthetically pleasing – why don’t we do that for the general population because it’s obviously do-able. They instantly jumped on, “well they’d have the money to do that”. But the fact of the matter is – if you’re spending the money on doing something anyways (as they were in this instance), or paying for clinically intimidating equipment that has obvious potential negative user-implication – it is either cost-nutural or at least more cost effective in the long-term. We need to stop blaming funding as a reason not to do something, we need to see past the short-term. Co-production/design can help us save money in the long-run through impact and investment. 

I feel like I am just at the very, very beginning of this journey but I am committed to this change. I believe in the power of creative practice — people-centered design/thinking — to radically transform healthcare.

Creative practice has the power to:

  • share and curate compelling stories that reframe issues.
  • I have the ability to synthesize complexity down to actionable challenges.
  • open up real collaborative practice
  • reimagining tools that enable rather than disrupt the healthcare workflow and empower patients/carers
  • advocating for the patient through new services, communications & products.
  • and much more.

We’ve got far to go but here’s my first and most important challenge as this creative hybrid healthcare professional:

1# People feel understood and cared for.

 

I can’t wait to see what Lizzy does to re-invision and re-invigerate Femcare to help enhance patients quality of life. Go Lizzy!

Lasso The Moon

This week I was invited to #PatientsAsPartners16 event – It was organized in big part by Roz Davies – as part of Recovery Enterprises in Sheffield, NHS Confederation and Y & H Academic Health Science Network  & a bunch of other organizations and people.

Drawing events and workshops and conferences aren’t an unusual thing for me. It’s a huge part of my bread-and-butter. I  get to draw all kinda of things! From health & social-care, to technology, the government, to film, to education, to science, to social-media, to inspirational stories. You name it. I’ve had the opportunity to have a good draw of it. And in the 5 years of doing it, I’ve learnt a lot about subjects I never would have ever really thought about before. I’d love to, in the future, write a small book – based on all the things I’ve learnt as this “graphic facilitator”.

But  the ‘Patients as Partners’ event and working with Roz again reminded me of where this journey started for me. Back in 2012, I drew a  bunch of events for Roz and her colleagues at NHS England. It was all about trying to make the NHS more “people-powered”. We worked with patients and other service users like carers, ensuring they were part of the new design of PCTs turning into CCGs in march 2013. That the patient expertise and experience was central and a big part of helping local CCGs commission services that reflect the needs of their local community and patients.  That hopefully patients would be partners in this process, and not just an “involve a service user tick box” process.

And these “lay-members” and other patients relayed their experiences of having to navigate this fragmented system that just didn’t understand their needs – even though these needs represent the same needs of 1000’s more living with the same specific chronic medical conditions. And this misunderstanding, or even rejection of their needs, even though not done on  purpose or without care – was the start of a scaring and traumatic time for these people. But they didn’t give up.  They used their resilience to push forward new ideas, and new ways of working. Or setting things up to help others in similar positions. They learnt everything they could, they tried to redesign the system.

I had just started my medical journey at around the same time. And in the beginning it was fine, but the longer I was in this limbo position – the more I hated being a patient. I still hate it, probably even more. I feel judged, in not a good way. I feel ashamed – of myself for not being able to fix what’s happening, for not being stronger. I’m spoken to like I’m stupid. Healthcare professionals (worth noting not all of them, of course) say loaded sentences to me – try and blame things on me because I am “young and female” – seriously -. I feel bad for not fitting into the [healthcare] system (story of my life). I’m an issue, not an assest. I’m “complex in the way I present”. It’s so loaded.  I’m complex because I’m a human being and we are complex creatures, no?   Healthcare professionals can’t wait to discharge me – with no solutions or suggestions or even help. And I just think, my poor poor GP.

(I want to say that as noted in many posts that I have been shown incredible care & kindness by most HCPs and I think the NHS is phenomenal and has saved me in many ways – but that doesn’t mean there’s not issues or unkind words in the process)

And as someone who intrinsically makes connections across fields, knowledge, see how things are linked, no matter how big or small those connection are, who loves working with people, and coming up with creative ways – or trying new things/ways of seeing if something works. I find this whole process really rigid and foreign & I can’t understand why it’s like that? Because surely, people aren’t like this?!

And as a result of this old school way, I’m left completely alone. In constant pain – causing unnecessary health problems for future smizz as I try and figure out whether different things/medications/diets/ect will work. I’d be lying if this experience hasn’t made me Question the value and the worth of my own life. I’m often left feeling like I’m not even worth the time of the system because I’m complex and they’re not understanding how it has all affected me. Having to “live with it” without any direction, advice – or even hope – in what to do to help or move forward. It’s really, really hard.

Luckily, the struggle is my life. And I’m motivated by experience to try and make things better. And whilst I’d rather not have this pain and experiences, it makes me more empathetic to others struggles.

So, drawing all these events – where we’re trying to change culture, to redesign things so that actually we have care – not a just a stop and fix and go system – really resonated with me. And I thought if these people (patients) are using their experiences to make and design new things to compliment the system — then maybe I can use my own experience and my intuitive knowledge/creativity to be a better healthcare professional – and change the system that way. One -on One. Person by person. Making sure people feel listened to. Not judge anyone. And understand that sometimes it’s the really small things that make the biggest differences to someone, so not to just make assumptions. 3 years on, 7 weeks before I qualify, I try and make sure that no one leaves my care without knowing the support, plans and options for them going forward, and i always try and make sure they know that they can come back – – with questions, concerns, ideas. ect.

So that’s why I retrained. Due to hearing all these stories and seeing the virtue of human resilience. Not to back down, to help healthcare to become more than just instruction-based (practice, protocols) but also idea-based (critical thinking, envision ideas of others).

And the artist in me is integral to the process of helping to do this.  Patients as Partners discussed how we need to be more creative. We need to help people understand. We need to re-design new pathways, processes, community links, use peoples knowledge from lived experiences.  Nightingale showed that soldiers weren’t dying mainly on the battlefield, but instead they were dying in the hospitals due to the poor sanitary conditions there. Nightingale used this now famous diagram to influence hygiene practices in military hospitals, which resulted in lower mortality rates. The kind of design that Nightingale used can be thought of as, “Design to improve understandability.”  

For the past few years there’s been debate about healthcare reform. But for all the talk of funding and not being able to afford to do things, there’s a lot less talk about the stories and lives of the people who are the center:  patients and HCP.  And I believe art/design/creativity is going to help us bring the people, their knowledge, their experiences and co-produce things that matter and bring the people who matter to the center of it all (Although NHS does need WAY more funding, there’s no denying this ).

It’s hard to believe that 2012, doing the People Powered NHS and doing the Patient as Partners event in 2016 – of how much it has come together, of how much it has inspired my journey and thought process. And if that’s not proof that peoples stories can help change things and help us learn, help us to empathize, and grow – then I don’t know what is.

There remains a misconception that health is determined by health care. Through hoping to change things through art/design/creativity we can make cities healthier, we can involve the people who it affects, and learn from what helps/makes them worse, we can make people feel more empowered & valued, and in turn we can make people’s jobs feel more satisfied. And we will make the healthcare system more sustainable and caring in the process. And make society healthier and better in the long run.

It sounds all a bit grandiose but actually, after years of listening to people not giving up and showing how they’ve helped to change things locally and beyond through their lived experiences. It’s hard to ignore and not feel inspired. Hold onto ideas, esp when they’re considered risky. We can totally lasso the moon. I’m almost sure of it.

 

This is a great project that showcases the above: http://www.recoveryenterprises.co.uk/about/

Patients as Partners project will be written up into a report with recommendations.

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Tomorrow belongs to those who can hear it coming

I recently received some incredible, completely surprising and insane(-ly good) news. 

As previously written on a few blog posts, I had applied for a PhD – not ever thinking I’d even get shortlisted, but I was happy with the learning process itself. Pushing myself forward, keeping my options open.

Before I fell poorly, and my life got all shook-up, I had an art practice-led-PhD proposal on my desktop for about a year. I wondered if I would ever be brave enough to submit it.  It was – at the time – something not super well researched. It was about Artwork and labour, and the dark-matter of the artworld – I was hoping to build upon my peers and artists who I greatly admire’s work – such as Gregory Sholette’s political activist artwork, like 1980’s PAD/D and his thesis on Dark Matter (which is one the best books ever on the subject IMHO); William Powhida’s  incredible practice on the Artworld power and structures; ARTWORK by Temporary Services; AREA Chicago’s work (that I was so lucky to have been an intern there in 2009 in Chicago, USA – under incredible people), Olivia Plender, Charles Avery, Tino Segal, ect ect.

 

But something didn’t feel right about this proposal.  Part of it was the proposal itself, and another part was probably my self-doubt, was I smart enough to do it? Could I justify my proposal?  And so I never submitted it. It didn’t matter much anyways, because the shit-hit the fan and the months proceeding this – my perspective changed after my life became obviously more temporary than I had imagined at 23/4. And I was left,  broken. My plans, my lil’ confidence I had left and my future-vision even more broken.

Art & Labour  became irrelevant to me, and with the recession and the popularity increase in socially engaged practices (yay!), my once some-what original PhD enquiry into art and labour became hot-topic. Diminishing any hopes at looking at it in the future.

I’ve never recovered from this illness experience. And I felt like I lost a part of who I was. For both better and for worse.

 

My desire to do this art & labour PhD got replaced  by my desire to change healthcare practice for the better. To make the patient pathway better.  As described many times before in these posts – my personal experiences mixed  with having this intuitive feeling about art & designs possibilities in creating a better healthcare experience and system – whether through designed medical devices (think IDEO), to architectural planning of spaces, art-therapy, using creative ways to map the patients experience or journey to generate things, to app-design and virtual reality. The possibilities are completely almost endless. It’s so exciting, but I also don’t think culturally we’ve got there to accepting it as one of our best tools (of many) to make things better.
So I re-trained, in radiotherapy & oncology to help me be part of the system to make sure I always listen to our patients and I felt that radiotherapy was this area that’s open to innovation.  And I’ve had a blast. I’m actually really good at what I do, who knew? I sometimess get 98-99-100% in my assessments, and I often get compliments & recommendations off my patients about my care, not too shabby for someone without any science background. I’ve learnt a lot about myself in this process, and built my knowledge and skill set further. And I feel such a good part of the teams I work with in the clinical setting.  But it has been ridonkulously hard. There’s no denying this. Especially whilst trying to juggle part-time work, and crappy health-issues. It’s been a battle. A healthcare course really tests you, and your resilience.
 

I felt that being an artist, I could use all my criticality skills and creative abilities to make this change. I felt that art had a place here.And i’ve flexed it out:
I made the first ever radiotherapy patient info app & won a bunch of awards.
I made the A-Z radiotherapy handbook comic
I made the faces of healthcare website of stories
I made an interactive radiation oncology revision group using twitter, storify, google docs and tumblr.
I made the first ever student-led conference dedicated to radiotherapy & oncology.
And a bunch of other things, which you can see here: http://radiotherapysmizz.tumblr.com/

 

Then I saw a call out for PhD proposals.
I was amidst in applying for radiotherapy jobs. I had been told that some of my ideas were “just too ambitious” in my first rad job interview, and then a few weeks later an informal chat with someone who previously worked in clinical-practice told me that: “I need to stay within my band, it’s not a band 5’s role to think of making things better”. Which started to give me a sinking feeling.
I’m a true believer in transformational leadership – whereby everyone – whether a porter, or service user, or volunteer, or student, or band 5 or band 8 HCP – can suggest an idea to make things better – because they’re the ones who experience the system in their way. And may see it from a different perspective – and that we all have equal responsibility: to practice safe and compassionate care. And to work together – effectively and collaboratively – to make things better. It doesn’t matter where you stand. As Judy Hopps says in Zootopia (AN AMAZING MOVIE THAT YOU HAVE TO SEE!) “Life’s a little bit messy. We all make mistakes. No matter what type of animal you are, change starts with you.”

 

So, I emailed my amazing Radiotherapy professor – Heidi Probst – and told her how I really saw creative practice/methodologies as a way to make change in healthcare. She instantly helped me out, said she’d be willing to talk through things. She pointed out her call out for breast/trunk odeama  (something that had come up with my app with a previous patient who was on an award panel – as I hadn’t included it in the side-effects – showing specifically why this needs to be researched as we’re not really taught about it in practice -i hadn’t really thought about it) and the quality of life issues associated with these patients – and we discussed how a creative way would be able to bring out these narratives – in a way that more well-known scientific qualitative methods aren’t able to do. To really make the people heard.
 

Sheffield Hallam has a unique research center called Lab4Living – it’s this super cool place that combines art & design practices to healthcare research. It’s a collaboration between art & health & wellbeing. So I saw this proposal sit right in the middle. A collaboration – and interdisciplinary investigation – with an outcome of a rich diverse narrative in many visual forms – it would be both art and health. I was advised by a bunch of academics to submit it to both departments – both art & health – because it was both, after all – and I felt that I’d do the same kind of work where ever I was based. So I did. I submitted the same proposal. Not expecting ANYTHING in return. No shortlist. Nothing. Just this increased knowledge that this massive gap in patient information and care exists for breast/trunk odema.

And honestly – for about a month – I thought of nothing more other than the plight of these people. I began to see people with trunk swelling on their posterior thorax with no advice in clinical practice. And this whole experience intensified something. Like when my eye doctor gives me option “1 or 2” when he sets my prescription, I suddenly saw option 2. It feels like it has heightened the stakes somehow -— reminding me repeatedly how precarious life is, and how every act is a contribution to a finite set of acts, that should be contributing to a bettering of the world (in whatever form that takes). Thinking constellations and not just stars.

Then I got shortlisted in 2 departments – and I panicked. I never envisioned this to happen. in-my-wildest-dreams!

So, after feeling like I was betraying both departments – I interviewed in both departments – each time feeling like I had let myself and the people who had given me this chance down. Both departments asked for 2 different kinds and types of presentations. PhD interviews are really hard to judge! I expected my chance to end there.

I don’t really know what happened in between.

There’s a quote that I’ve been thinking about for a long time, about having to let go of our planned life, to allow us to get to the life that’s waiting for us.

And when I fell sick, I let go of my planned life. And I went into radiotherapy but for a long while i just didn’t know what was waiting for me. And that has been one of the hardest parts. I now feel like maybe this is what’s been waiting for me. This beautiful combination of practices – both creative and health.

“You don’t understand anything until you learn it more than 1 way.” —Marvin Minsky

After much soul-searching. And I mean, really soul searching. I decided art would be the best place to sit – for the freedom. Though this decision did not come easily.

Getting this fully-funded PhD scholarship in art feels like I’ve come home. I’ve been lost, but I’ve been found. Changed but not fully forgotten. For a few years now I have been caught up between all that was and all that could have been and be. You feel lost.  As soon as the bones mend, you forget about the fracture, but you don’t forget that experience that lead to it.

It’s a bittersweet moment because I wouldn’t even be here if it wasn’t for Heidi’s help, and I wouldn’t even be interested in making healthcare better through creative methodologies if I never fell sick in the first place.

My great friend Magda pretty much sums  up the bittersweetness perfectly with her quote to me: “Life sometimes gives us lousy hand of cards and we play it like it was fucking aces!! that’s what we do.” Someone make this into a motivational poster.

It is at this juncture that I want to REALLY thank all the people who has made this possible – a reality- Heidi, Alex Robinson,  Jo Doughty, Laura P –  all the people in art – Becky Shaw, Kathy D, Penny M, Claire — so many, many other people  – ALL OF MY FRIENDS & my mom & nan & bro – for all of your help. For taking a chance on me, for believing I could do a PhD, for inspiring and advising, for your belief in making healthcare better. For hoping for a better future for these patient. For all the talks, for all your time, supporting me. For taking a risk.

I am endlessly grateful. I know I wouldn’t be here now if it wasn’t for these people. I never take anything for granted and I feel like I can never repay y’all.

For everyone whose had a dream, and for all the working class kids who get told they can’t even make it to university — this is for you. We can do this.

Tomorrow belongs to those who can hear it coming.

My new chapter begins in September. And I am SO nervous.

No risk, No adventure.
To innovating healthcare by focusing on people & their experiences!

Your good friend,
Hopefully, future Dr. Smizz 😉

PS: my radiotherapy career isn’t over either.

 

 

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The world isn’t yet done.

Being freelance and working from home, I slowly turned into a sucker for cooking shows like Masterchef, The Great British Bake-Off, The Taste, Come-Dine-With me, and almost anything on the Food Network. No cooking show was too long or too low-brow and underproduced for me.  I thought it was probably an age thing – I never watched this stuff when I was younger: turned out it was just a love of different foods (probs due to aging-maturity) but I think it was more to do with avoiding doing work/relaxation thing. This became clearer as a healthcare student – I watched these shows even more religiously. The MasterChef series is ALWAYS on when I’m trying to revise for exams or have 100 deadlines. Trying to avoid reality.

One day after clinical placement, my housemates and I sat down with our food to eat and watch food on the TV. This was a show about a bunch of chefs trying to make it in this Italian restaurant/bakery engrained in tradition and processes. One of the young chefs tries to take a bunch of short-cuts and the older chefs catches him – and tells him off – saying, “that’s not how we do it here! We do it the long, hard, stupid way”. Which is stuff like not using yesterdays bread, making fresh new bread instead, making the soup from scratch. ect ect.

And this really stuck with me. The Long-Hard-Stupid-Way.

I think I do everything the long, hard, stupid way. I often get told this. If there’s an easy or a hard way – you can guarantee that i’ll find the hardest way first. My mom says it’s because I don’t have any common sense.

But I started thinking about the routes I’ve taken to get where I am now. And I wonder if I could take an easier path – would i have taken it? The answer is probably no. And I started finding pleasure in reflecting upon this rough, hard-stupid-way path.

There’s a whole spectrum of – here’s the long hard stupid way  – which is ultimately the way I seem to be compelled to make & do things, and then at the other end we have super efficient way over there.

When you work the long hard stupid way – it looks a lot like worrying, scratching new ideas, endless notebooks, trying to learn things you’d never dream of  doing before, it’s a lot of others looking at you like you’ve got it wrong, it’s staying up late and then having to get up early the next day (killer), it’s not returning your library books on time,  but all of these actions are inspired by just caring a lot.

That’s not to say you can’t be efficient and not care deeply – but i, personally, don’t know how to do that.

But behind the long-hard-stupid way is a gift. It’s a lot of heart.

It’s staying up late, and sketching out plans and learning how to code smart-phone apps (FYI – it’s not the same as making a website which I originally thought it would be. Just because you know italian doesn’t mean you’ll be able to speak french), and taking the time to make it – without ever thinking about having a plan to make it accessible. Turns out making apps is a rollercoaster.

It’s going through a really testing health-issue, that literally breaks who you are – and makes you question everything you are & your worth– and going through the system that doesn’t know what to do with you – because you’re not a child and not an old adult – and instead of being a normal person and try and change the system from the outside, you decide to re-train and try to make the difference yourself,  inside the system.

It’s deciding to apply for things you’ll probably never get accepted to do – for the love of learning new things, and the process, and meeting new people – & ultimately hoping that the rejection and the attempt itself  will lead to more change and things to build upon for the future.

And most of all, it’s deciding to do all of it together – at once. Long-hard-stupid-way.

Freelancing is often the long-hard-stupid-way. You’re never sure how much work you’re ever going to get. So you just say yes to pretty much everything, just on the off chance you hit a lull and therefore you’ll still have some money coming in.  All the while – burning yourself out. The thing is, you always work more hours than you get paid to work. Life-work balance is hard to strike. And you can never officially take a sick day.

Working alone is hard. Being your own investor is hard (& stupid sometimes). And running all of these things together – teaching, app making, website designing, conference drawing, illustration commissioning, clinical-student-ing, academic-working – all while feeling crappy & being broke- is super long, hard  & stupid – and to do it responsibly is even harder.

Learning to work your life-balances out is hardwork. And it’ll probably take you some long-hard-stupid-ways before you know when is the right time to say yes and when to say no. A friend of mine when i was feeling so awful from fatigue & I felt like i was letting people down told me – you gotta say no if you really want to say yes.

Would i have ever wanted to go straight into healthcare from school? The answer would have been hell-naw. I didn’t have the empathy. I didn’t have the experiences I have now. I needed to experience the hardship to gain the drive.

So even though the long, hard, stupid way is just that, what it produces is something cool. When we work this way, it sort of gains an empheral quality. It’s sort of in the air – everything always feels up in the air. Whenever we make things this way – either for ourselves or for other people. There’s some kind of value in that. And that value exists outside of commericalization or money. And I love that. It sort of becomes a gift.

The thing with gifts is that – you have to be given a gift. You can’t ask for one. The more a gift moves, the more value it gains (has it been passed on through the family, does it fill a gap – a representation of a bond, is it using someones time) — like wise – the more work you put into something – the more value is gained. Ultimately a gift  is a sacrifice.

Essentially the best work I do is when I say something or do something or give something , to really help people (in every/any way), or to people I really care about.

But the biggest potential is that – Doing things the long, hard, stupid way – you learn all sorts (mostly wrong things) – but you get a gift. Or you create a gift for others.

It’s that you can build a foundation or something for people. My practice is driven by my  belief in making things for other people. Whether that’s making time to listen and to help, making something to make people think, making something that will better their experience, making something that brings people together, to make someone laugh or feel heard. By making something for other people, by considering someone else it moves the edges of our beings closer together and we gain more overlap in the process.

And we should look at these overlaps, to talk to each other. to know what we all have in common and to create more situations to create more commonalities. And by doing this we can some how grasp the wonder that is so hard to grasp – of what lies in the heart of making – and making things the long, hard, stupid way.

And when I think about all the awful things this government is doing and pushing through – from ruining the NHS, and demoralizing Junior Doctors, to entrenching a future generation in 50,000 + debt for education, to cruel benefit changes, to making students criminals if they can’t pay back their student loan immediately after they’ve finished university, to trying to get rid of our human rights, to airstriking syria, to stopping free dinners for children who can’t afford to eat. It makes me so, so, so angry. And even helpless.

But the long, hard, stupid way is all about continuing to try, push and make something – we don’t care about barriers – or the challenges – or even the outcome: the gift that comes out of making things for others shows and says for  us to stop, look and look around us. It says everything is possible again. And the world isn’t yet done.

If we can find the courage, and the strength to make things (whatever that is) for others, we can give these gifts back to one another. There’s so much more what unites us than what separates us. People power goes a long way – even if its the long, hard, stupid way.

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