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

 

 

 

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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). 

Small changes

Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.

My head of studies for my PhD is a woman who is internationally known for her creative-design- person-centred approaches to dementia care. She’s an Occupational Therapist, with a background in art psychotherapy, and a PhD in using Art & Design methods in enhancing care in care-homes.

So I was super stoked when she asked me to be part of 1 of her many projects (some paid work on top of PhD). She invited me to be part of a project where we will design a Dementia friendly eye clinic. In real life.

Yesterday we had a meeting with some service users (I hate this term); a carer and his wife who has dementia. We spoke about all of their experiences of the eye clinic, from everything from leaving home and parking all the way through to leaving at the end.

There were many flaws in their care, some avoidable, some just a mistake, some just part of the design flaw within the pathway.

What I discovered when we looked back at our notes was that the things we could make better for people with dementia – would actually make these things better for EVERYONE who uses the service. How crazy is that?

I remember a few years ago, I had some crazy neurological stuff going on and it really effected my eye sight – I’d get like flashes of white light in my vision and I lost some of my peripheral vision. I had to see the eye doctor a bunch of times.

It was crazy just how unusual and difficult it was to go through that pathway. Eye drops that sort of itched, and we’d all sit staring at a wall, packed in like a crowded bus down a dim dirty coloured cream corridor. You couldn’t see anything clearly, but there was loads of small text leaflets teasing you to try and read them on the walls.  Your eyes hurt from the light. When it was time for anyone to call you, you’d get up and not be able to see who and where they were calling you from. Then the actual examination of the eye is uncomfortable – you have to lean onto some medical equipment – and being small, my feet didn’t touch the floor, there’s no arms on the chair & you’r completely unsteady – and my neck hurt from stretching it out across a small table to sit my chin in the face of the eye doctor.

It felt undignified, and intimate and vulnerable and stupid all at the same time.

Once they made me sign to consent to something I couldn’t even read because of the eye drops.

And then when it’s all over, you leave – by feeling the walls around you – and trying to remember which way was out. When you finally make it back outside – the light is bright. But in an unfamiliar way – and navigating the world through blurred vision enhances a crazy headache of sorts.

That was my experience as a young-un. Someone who has pretty decent eye sight (or did).

Now imagine that experience for someone who struggles to convey pain, or issues. Who is confused? Who has learning difficulties, short-term memory loss. Who can’t read?! 

I can’t imagine how disorientating and how scary and uneasy it must be.

I’ve been missing my clinical aspect of being a radiotherapist recently.

I think it’s the team work and the patients I miss the most. So I’m really looking forward to being part of a team, working with patients and their families, in a clinical setting again – but this time my main aim will be to come up with & test & prototype cool, person-centered creative & critical solutions — whilst at the same time learning some cool new researcher skills. Mostly how to get something you make, and apply it and embed it into the system. This is a skill I am really missing.

From just 1 meeting, I’ve already paralleled some similarities  of things that could change within radiotherapy and the dementia care pathway — there’s just such a long way to go. But, I’m excited!

We already have 4 areas of focus, and ideas to prototype. It’s too early to share or know if they’re any good or useful. But I can’t wait to share with you guys our future work on this!

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Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

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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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learning to lean in

Words are  often a poor substitute for imagery.

One of my Doctors: “So Sarah, why do you want to work in healthcare – even though you’re an artist?”

I spoke about my own experiences & the opportunity artistic practice can offer to enhance care and services – the ability to use a different perspective to make a difference.

He turned to me expressed his heartfelt regrets and said: “Art gives you, like flying, something that other people don’t have.”

It was as if he was saying, what you lack in a functional immune system, you make up for in other unique ways.

And with this, a few days ago I found out that I passed my radiotherapy & oncology BSc Hons degree with a 92.6% First-class degree!!!

I have a fully-funded PhD scholarship offer bringing together 2 of my passions together (art & healthcare) that starts in October, and I leave for the U.S.A in 5 days times for a good couple of months. I genuinely can-not-believe it!!

Not too shabby for the working class kid with no science background or previous healthcare working experience.

I am humbled, and most of all feeling extremely privileged to have shared this crazy journey with you all. I wasn’t sure I was going to make it to this day, in all kinds of ways, and for this reason this achievement feels incredibly important and special.

For a long time, I had made who I was by being a work-horse. I could totally juggle 8 things at once. I could totally stay up til 3am in the morning working on hopeful-kick-ass projects/ideas/gigs – and then get up at like 9/10am the next day — no questions about it.  My mind constantly buzzed with all the cool things we could do. I’d sleep with a notebook and jot down cool ideas in the middle of the night. If you needed something doing – I was the person! But Nothing prepares you for the day when you can’t do what you do any more.

I didn’t feel like myself. I felt broken. I loathed who I had become.

There I was, hopeless – barely there. Not feeling alive.

I cried. I felt sorry for myself. I didn’t believe it was happening to me.

I’ve spent the last couple of years searching for the Old (younger) Smizz. I’ve looked for her all over  —But there’s no going back to my old life.

I am broken. There’s no protocols or discharge instructions to guide people back to their lives.

But I am alive.

I do think about that a lot.

 

This degree course allowed me to gain some control, it gave me some much needed (if not too much) structure and helped me to try & hopefully make a difference. After all, what is the point of saving a life if the life isn’t a meaningful one?

And the friends I’ve met whilst doing it – all with their own personal stories – have helped to inspire, and alongside all my other friends, they’ve helped me to carve this new path for myself.

It highlights the fact that I’ve never actually accomplished a single meaningful thing by myself, and this is included.

The past few years has taught me that reading the fine print of your mortality is a great sifter of rubbish.

In the chase for the extraordinary we can sometimes forget to embrace the ordinary moments. It’s about embracing our vulnerabilities and learning to ask for help. We also need to invest in others without expecting returns – because that’s real love.

And it’s about realizing that your time is valuable — what you do with it, how you spend it and with whom.

 

It’s picking yourself up when life knocks you down and finding beauty in your bruises. But this might take years and years to do, it’s not an overnight fix. We are all damaged & broken & traumatized & mistake making in some way or another. But it doesn’t define who we are. So don’t be so hard on yourself. And Don’t be so hard on others.

3 years ago, I literally couldn’t get out of bed. Today marks a HUGE milestone for me. I got out of bed each placement morning (1000’s of hours of free labour) (i wasn’t happy about it lol), I ground myself down, I gritted my teeth and pushed through most of the fatigue & pain, and some how completed 3 years clinical education. Super early mornings, physical lifting, lots of moving, emotional distress, stress, deadline after deadline, many naps where ever I could find them, doritos and a 2 year long headache. And somehow I got here.

Whilst I still live in deep pain, and still haven’t learnt my fatigue limits, and I’ve lost feeling all on my left side, and a headache that often leaves me crippled to the floor. I’m proud of how far I’ve come. Recovery is hard. I don’t think we give enough people credit for that part.

I Never, genuinely – hand on heart –  would have believed any of this would have been possible.

So thank you to YOU ALL.  My mom, my bro, my nan, my amazing friends – old & new, stafff, lecturers, my twitter fam, my internet friends. Anyone and everyone.
Without your advise, support, jokes, cleaning, food, tears, stories, knowledge and just being there and accepting I take 7-10 business days to return a text/email – I’m not so sure this would be the blog update it is today.

I plan on using all of my time allocated.

And I can’t believe I’m here.

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The things I’ve learned from a broken mirror

Saving a life doesn’t change the world, but for that person, the world changes forever.

I’m right at the bittersweet end of my 3 years of  BSc Hons radiation-oncology school training. Assuming I pass the last few things, in 3 weeks I’ll be technically allowed, once my HCPC registration and license and indemnity insurance comes through, to plan, care for and treat people who have cancer with radiotherapy. Which is really scary. I will be responsible and liable by law for the safety of my patients.

And yet, the 3 years has gone past in a whirl-wind. It has been both long (no thanks to working clinically all through the summers) and extremely fast. Energizing and completely ball-breakingly fatiguing. A mixture of: I’m not ready to be qualified yet to I just want to do the job, already! Slowly ticking off endless assignment after endless assignment. Slowly being able to reflect upon how far we have come.

And now I write this post. With a cool raspberry lemonade in one hand, I stare out of the window with the sun in my eyes and feel kind of relaxed for the first time in a long time.

Doing this course was a massive risk for me.

I had nothing and everything to loose.

Here’s what I’ve learnt:

A few years ago (y’all know the story), my original life had become broken by ill-health and everything changed.  No one should ever underestimate the lack of quality of life living with horrible, endless, chronic pain and fatigue offers.  And as a result, my old life just didn’t fit in the same way anymore. So, after drawing people wanting to change the NHS to make it better using their health experiences, and this personal medical experience of mine – I decided to give up my planned life of being a full-time artist and retrain in healthcare (with the perspective of an artist). This was because I needed to get closure, to understand the human-body, to gain some control from this knowledge, and a routine – to try and ease the fatigue (that turned out to be a LOL – there’s no rest in healthcare): but most of all, my biggest motivator was  to try and make a difference and really care for others.

This was because the NHS was the first place I had been shown any real true kindness  from complete strangers when I was at my most weakest. I felt (& I feel it even more now than ever) this pit of gratitude at the bottom of my stomach when I think about the care I have been given & continue to receive – from everyone in the NHS, not just doctors & HCP but to the students, receptionists and porters, ect.

From my GP (the awesome Dr. Marco Pieri) who would say we’re friends. And in the beginning, I thought that saying we were friends was weird.  I was suspicious. It’s just his job? I knew nothing about him.  But as I grew older with him, and cried on him when I was at my lowest (i don’t ever cry in front of people), and moaned, and repeated the same endless complaints at him -much to his dismay – he built up this incredible knowledge about me as a person – not just what was wrong with me. He asks me about my work, my life in general and about my fears. He asks me what I want to do in regards to my care and he gives me lil’ prep talks (even unsolicited NHS job interview advise) by telling me to keep going and just to live life to the fullest (fo’ serious). He was one of the first people I told (by chance) that I got this awesome fully-funded PhD scholarship. He stopped me from jumping around from random GP to GP, because I didn’t understand the importance of continuity in care at the time. I feel like he intrinsically cares – not just for my wellbeing – but for the whole population of Doncaster after discussions with him on his passion for improving life expectancy & outcomes for the Donx to meet the rest of the population (thus his role as a clinical lead in the Doncaster CCG).

It turns out that he is in fact both Physician and detective, and through time, he also became both healer & friend. And through experiencing a lot of his kindness, his humor, his knowledge, his time & care – I felt like I needed to return it.  I wanted to be that person he was for me – for my patients; to make them feel cared for and valued. To not feel insignificant when you’re at your most vulnerable.

What I’ve learnt is that patients have been my best teachers, but some of my lessons have been painful.

I  have learnt from their  incredibly life affirming stories of hope, humor, achievement and tragedy and heartbreak. There was a woman whose volunteer hospital transport driver turned out to be her long-lost niece – found and reunited together through daily drives to & from radiotherapy treatment. I’ve treated gold-medal winners from the Olympics 50 years ago, pilots, magazine publishers. I’ve seen people go home and back with nothing but the clothes on their back- for 7 weeks, heard stories of amazing neighbours and learnt a lot about people’s pets. I’ve heard horrific stories that just needed to be told and heard – of death, loss, and abuse. Every day is a day where I take at least someone home in my head. Some fade away, eventually. Though 3 years on – there’s some patients who are etched onto my mind and I don’t know why some really stay with you.  I stopped checking up on them post-treatment because quite a few have died since- and it makes me feel incredibly sad. These people who we often just shared 2 or 3 weeks together at 10 mins + at a time become significant to me. And  I hope I never loose this into qualification.

 

It will be weird not being with #teamleeds, every day; My friends who we’ve gone through and seen a lot together. These stories bound us together. They’re like brothers and sisters now. I imagine this is kind of how joining the army feels, but instead it’s a healthcare course.  It will be weird not joining in on a random Facebook conversation, not having to panic about the endless deadlines and  unclear learning objectives. My closest friends (most of them younger than me) on the course have taught me a lot about growing up. I’ve managed to have a second ‘coming of age’ experience through being good friends in their journey. We’ve travelled when we could together, hosted parties and feasts of food. Shared and supported each other through tragedies, deadlines, successes and the crazy profound things life throws at you. I am completely in awe of these now 21 year olds who are mature before their years. And I think about how their strength is true testament to how I’ve managed to get here – 3 years on. At the beginning of the course, we said that we would drag each other through to the very bittersweet end. And here we are, 3 weeks to go, still dragging each other. I’m pretty sure I wouldn’t be here now if it wasn’t for them, egging us on.

Then there is the staff at the place where I’ve trained, they have been incredible. They’re passionate about education and patient care and safety. They love radiotherapy. They’ve shown me time, enthusiasm and exactly what being a compassionate healthcare professional should look like. I’ve learnt how to ask questions, without being too leading. I’ve learnt to hear for things not actually said, but implied, by patients so that I know if they need more extra support. I feel incredibly indebted to them for their knowledge and time (and patience!). I hope that we stay friends at the end because they’re such great fun people. And I can’t thank my tutors enough for all of their guidance and knowledge in helping me shape me as a healthcare professional!

What I’ve learnt in my Healthcare education (both officially and as a patient) is that everyone in the NHS has a reason to do what they do: It’s almost never about money or our quality of life. It’s because we can make a difference. All any of us ever want to do is to make other people’s lives better. Sometimes it’s life-changing, sometimes it’s something much simpler.

Sometimes things don’t work the way we should. The system isn’t perfect. Neither are the people in it. But it is fundamentally decent and good and whole. That’s why I am absolutely committed to the principles, to the ideals of the NHS. I think it’s just about the best thing this country has ever achieved. It is remarkably robust, but the pressures facing it are immense, and there are few easy solutions. But we – the people of the NHS – ALL STAFF- are absolutely committed to it.

What I’ll always remember from my education in radiotherapy – and that crazy 3 years of unpaid labour – will be the stories that made these people into NHS.

Being a radiotherapy student has given me a lot of perspective and new skills I never knew I could do.  I’Ve learnt that whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

Life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES.

And life can be incredibly short. So see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes,  and never, ever start smoking.

Thank you to the whole of the NHS for your love, and kindness, and education. It turns out studying Radiotherapy turned out to be WAY more than just a degree at the end. 

I have learnt, through pain,  that I am more than my pain, more than what was built & burned, more than all I’ve lost. You will get to build again. And if you’re lucky, you’ll get to share this adventure with the people who’ve helped you.   Remember it ain’t always about where you start, but it’s about where you’re going and end up.

To the last 3 weeks!

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0-5.jpg *Hope I pass!*

 

 

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:

amielle-care

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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