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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Designing Healthcare through Art & Design.

Medicine develops so fast, especially radiotherapy. But one of the areas we’ve not caught up with and developed  is the design of healthcare. I know what you’re thinking. What’s art & design got to do with anything in healthcare, really? And if you’re thinking this – this basically uncovers one of the reasons why design is an issue – because no one is thinking about it.

Last year I made the first Radiotherapy Patient Information Smartphone app. RADcare. Just me. I drew it out on paper – big sheets of A3, pages and pages – in the library and in Starbucks, I read paper after paper on patient informational needs, scoped out what is already out there, thought about the pathway and critically reflected my time as a patient and doing first-day chats on clinical placement. After being a patient (not a radiotherapy one) I’ve always felt that patient information – from the letters that you get from hospitals with appointments on, to medical procedures  to be flat, lacking in information that you actually need (Like where do you check in? ) and just depersonalised. If you actually get anything at all. Visually, they’re not very good either. It’s no wonder most people don’t read the material we give them. It looks about as enticing as getting a filling done at the dentist.

Then there’s the issues of – how one leaflet can’t really fit all. It can’t offer all the information you might want to know, it may also be in a format that isn’t accessible for people – like literacy is an issue.

And yet the government wants us to be more proactive with our self care – using the internet to try and gauge what we have is important enough to visit our doctors. But here in lies another patient information problem. We don’t know how reliable websites are for healthcare data and information. So when a patient, or a family member/service user, wants to find out more information about their treatment – they end up in a sea of vague, out of date, in accurate, non-protocol information.

So I designed this prototype smartphone app.  I wanted it to be everything current patient information is not. Accessible. Even a bit cute. Detailed – but you have a choice on how much detail you want to access. And colourful. A mixture of formats – from animations, videos and text. And most of all – more personable with a bit of heart. I wanted to break all the corporate rules.

Whilst it’s so important to do your user-research first, and make the UX design user-friendly first before design aesthetics – I prepared it with research and aesthetics first. I knew that the coding stuff (I need someone to make it work better than my amateur coding can do) can be fixed later.

As Bon Ku discussed in his interview on the importance of health care design, he states that “most of us don’t realize that everything in health care is design.Someone designed the pills that we swallow, those gowns that we wear in examination rooms. But I think most of it’s designed poorly; we too often will design mediocrity in health care.

And Ku hits the nail on the head perfectly. I’m passionate about using art processes in innovating healthcare and it’s design away from mediocre.  I jumped ship from art to healthcare to use my passion of trying to eradicate social-injustices and inequalities to try and make the patient pathway better. I know, from my work with NHS England and other healthcare organizations, that creative methods – from drawing patient’s experiences, and filming their life – are great and affective ways to make the patient feel heard and valued – and as a result – you produce something with much more worth and use. Because it was built with the experience of the people using that service/prototype/leaflet.

I think part of the worry with using more creative ways of designing healthcare comes from healthcare’s obsession with measuring outcomes. In a scientific way, too. This culture needs to be adapted – not just for innovation but also for our practitioners whose continuity of care doesn’t get acknowledged. That extra 10 minutes spent with a patient – with no boxes to tick to get measured – but it made a massive difference for the practice and the patient.

But how do you evaluate the use of creative ways effectively? How do you measure them? Is small-scale testing enough? It’s a mine-field.

So I hope you’ll help me. I wanted to try and use my app as part of my dissertation — just so my spare-time project gets some academic acknowledgement. I’m doing a design evaluation of the app – and I’ll be putting key-parts of the design online with some questions and one-on-one interviews. If you want to help me evaluate the design — i would be extremely grateful.

If you want to help me – I would love to hear from you! – holla at me on Twitter, or by email smizz@sarahsmizz.com

If you have any cool articles about heathcare & designing/art – i’d love to know about them too.

And if you’re passionate about making a difference, or about art& design and health care too – Let’s share an email or grab a coffee.

Here’s a taster of the app (My favourite but is skin-care guide) 😉

 

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Today, I discovered that I’ve forgotten my path, maybe even who I am.

“If you change the way you look at things, the things that you look at change.” — Max Planck

I’ve written about it endlessly before, but I feel like I’m living a new – unexpected – even unwanted version – of my life. i’ve endured years and years of being in pain, delibertating symptoms and fatigue that made it so my old life didn’t fit the way it used to. My old life – and still does when I get close to mirroring it – drove me into the ground.

I love art. I love it with every fiber of my being. It was the thing that kept me awake all night, and i worked and worked and worked on this pure love of mine. It didn’t matter that it wasn’t really money viable – it didn’t matter that I kept 3 part-time jobs down as I jugged residencies and commissions, and writing endless proposals that would mostly get rejected. I loved it. I loved the potential for it to connect people, and ideas, and potentially make a change. Make a difference. I could never see a future for myself where art wasn’t in it. It’s still the thing that helped me keep a part of my self through the big change.

Unfortunately this tidal wave came begging to tear down my dawn, and made me struggle against it, made me choke on salt water. And it changed how i saw the world. I took a bit of a different direction — but I told myself, it would be with art too. But it was hard to see a future when I wasn’t sure if I was going to have one.

Trying to be arty and creative in healthcare is hardwork. Some people are suspicious of your enthusiasm, suspicious of your motivation – they don’t really understand you. Some people just don’t get it. Some people are amazingly visionary and creative and risk-taking too – and super supportive which excites me and I’m endlessly grateful for these people. But it’s hard. And my personal-art practice took a bit of a backseat in my eagerness to better the patient pathway.

I’ve been writing a proposal — another one that will probably be rejected – in true art form – but it’s reminded me of my old life again. Writing pretentiously yet beautifully philosophical sentences feels good for my soul. Writing emotively instead of just cold-facts – blunt, how do science people do it all the time?  I can slowly feel the warmth coming back into my fingers and heart. I can feel parts of my brain working in a way that I’ve missed.

Conceptions of the body are not only central to medical anthropology, but also to the philosophical underpinnings of Being. Western assumptions about the mind and body, and the individual and society, affect both theoretical viewpoints and research paradigms. These same conceptions also influence ways in which health care is research and delivered in Western societies.

Foucault (1972, 1977, 1980, 1988) stated in his writings on biopower that medical technologies frame and focus healthcare professionals’ optical grasp of the patient, with the ‘medical gaze’ that abstracts the suffering person from her sociological context and reframes her as a “case” or a “condition”. Patients are seen as the voiceless, lost in a system that reduces them to their diagnoses, or not even that making the experience even worse, and often fails to understand their suffering. This is exemplified through my own experiences and was exactly the reason why  I – the artist and experiencer – needed to change things.

Clinical biomedicine is the product of a Western epistemology. Healthcare professionals often struggle to view humans and the experience of illness and suffering from an integrated perspective, they often find themselves trapped by the Cartesian legacy. This lacks a precise vocabulary with which to deal with mind-body-society interactions, resulting in the disconnectedness of care throughout a patients’ pathway and beyond.

In writing this, I realised just how disconnected I had become from my own art practice — the person I was – and my experiences. I had to go through archives of old websites to remind myself on what I did in my art years for this application; the time before I fell sick, before I committed most of my energy to healthcare. It just seems like a distant memory now. And I was shocked.

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It was like in a movie when someone discovered old, worn-yellowed newspapers of events they couldn’t believe happened.  Here existed an amazing list of my achievements, that I had forgotten all about. The pain had erased them. Struggling to survive, and get through each day had taken its toll upon me. I had literally forgotten what had made me who I am.  The crazy thing is, I struggled and worked so hard to achieve all of this. And it had disappeared as quickly as my old life had been taken. What amazed me more was how this was pre-bucketlist. I have since, began to tick a few of my other goals of my past life off, unknowingly. And I have achieved a bunch of stuff that became more important. (It’s als important to note – i’ve been drawing loads & getting paid as an artist/illustrator – it’s just not the same stuff)

But as my radiotherapy studying chapter is coming to a close, I’m starting to feel the eagerness to reconnect with my old life – despite still having all the issues that made me change my life direction in the first place. And it’s confusing.

“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” — Joseph Campbell.

I let go of the life I had planned, but the life that is waiting for me is unclear. I’m unsure what to do, where to go next. Healthcare doesn’t fully accept me for me, but art doesn’t either. It has so much commodity and rewards so much self-absorbed-ness . Life is precious and there’s suffering – which art can help aid – but the Artworld doesn’t understand what I’ve been through, and felt, and why healthcare needs to be changed so others don’t have that experience.

But who will accept me? And why have I written this? Well, if finding my old resumes and pieces of my old life dotted around like dusty digital footprints has taught me anything today – is that we should be archiving our lives, our work, just incase we do forget what we’ve done. If we forget who we are, or who we were.

And I also know that there’s people like me out there. This here serves as a reminder for future Smizz – who will probably be doing something else completely insane – like a career in maths or something else I can’t do. And for anyone else going through a hard time.

You gotta swim, swim for the music that saves you when you’re not so sure you’ll survive. And swim when it hurts. The whole world is watching – and you’ve haven’t come this far to fall off the earth. Currents will pull you away from your love – just keep our heads above the water. Memories are like bullets and fire at you from a gun. We all get cracks in our armour – but don’t give in. Sometimes the nights won’t end. But you gotta swim for your families, your sisters, your brothers, your friends. You gotta get past wars without cause, past the lost politicians who don’t see their greed as a flaw. You gotta swim in the dark, there’s no shame in drifting, feel the tide shifting away from the spark. You gotta swim, don’t let yourself sink – you’ll find the horizon, please believe me – I promise you it’s not as far away as you think.

The current’s will always try and drag you away from your love- just keep your head above the water and swim.

Art is part of my being. It’s what makes me tick. It’s what makes me feel truly happy. But I also know I can’t let inequalities, and issues that exist that I know can be fixed – happen without any input.

So even though I had forgotten 80% of my art life. I’m going to put it down to trauma. I don’t necessarily think people are born as artists, but they certainly die as artists. I’m always going to be an artist – even if I lose my footing a bit. And I look forward to building more goals to combine art and suffering into better change.

I never want to forget who I am again.

 

 

Post Traumatic Growth – Trying to Make Sense of Things

One thing that my friends know about me, is that I constantly think about our existence.

As a kid, during computer club after-school – after printing out a million pictures of Lil’ Bow Wow to add to my collage shrine to the pint-sized rapper – I then pretended to be a 16/17 year old on a Philosophy Forum (I was about 13/14). I didn’t grow up with books, no one in my family is interested in the human condition – in fact I grew up with the plight of survival – the art of just getting by. On whatever that was. Ketchup sandwiches for lunch because that’s all we had in the house, and the rent was due – and in massive arreas. But I constantly thought that there must be more. I would devoure and try to understand these philosophical ideas on time, and fate, and existence. Ultimately – being.

By the time I got to university, by myself, by my own hardwork – and my own investment and time – with some guidance from a few teachers that believed in me at school – I started to think that the shit that I had endured years of my life – was part of a destined path. An experience I had to learn from. It taught me about social justice, the differences between in having very, very little and having a decent amount, it made me know that society is unfairly distributed – the marxist in me. I thought that it was practice – to give me a sense of what it’s like – and that I had got to where I was (uni) so I had some tools, a way to help make a difference, using this experience in hand. I had – and still continue to do so – imposter syndrome though. I thought I’d drop out, that I wouldn’t be smart enough, ect, ect. But the complete opposite happened and I always quote my best friends at uni as the reason why I fell head over heels in love with art, with learning, with working even harder than I ever had before on this passion of mine.

I’d think of all the factors that lead me to meeting them, and decided it was fate. That I had acted in a specific way, met all these people- specifically for a reason. Without them, I wouldn’t be here. I wouldn’t have had a specific experience, they wouldn’t have helped me, ect. That it was kind of written in the stars.

Now, maybe it is – probably it isn’t. The logical person in me says – no way. It’s just coincidence and it would be the same outcomes irrespectively because I’m a pretty decent judge of character.  The person – which is by far a bigger part of me – knows that psychological this is some sort of coping mechanism. And that actually, every person brings something different to any and every situtation. And I know a kid from my background has actually jumped a bunch of odds, and so I believe it’s some sort of fate thing. But i know I haven’t got here alone.

When I fell sick. I couldn’t get out of bed. I think back to when I was around 24 – and I actually can’t remember that year very well at all because I spent so little of it conscious. I couldn’t reply to emails – I’d go to sleep at 6-7pm, and not get up until 1-2PM and I’d force myself to get up – I’d attempt some drawing commission work for 3 hours or so. Waiting for 5-6pm to come back around as a decent time to get showered and go back to bed and replay this whole cycle. Over and over. Every minute awake felt like I was being crushed, I’d have day-chills, nose-bleeds, nightsweats, and the worst pain.

I felt like I was going to die. I was angry, upset, in pain, why me? I had lost who I had spent so many years building. Smizz the kid who’d reply an email in an instant, who could juggle a bazillion things at once, who kept down and writing and who couldn’t understand why others couldn’t be as committed to making the change. I lost that. I had lost my identity. But it didn’t matter anyways – because was it even important? Crisis, or what.

But through my health experience, I naturally did what I had done throughout my life. There was some sort of reason why this had happened to me, surely. Just another lesson. I still feel shit, and I have a bunch of stuff that constantly keeps happening to me.  I knew this awful experience – throughout the healthcare system – meant that I could change it – even if it was just being there to listen to patients. My shitty health changed me.

Occasionally I feel stronger than I did before,  more spontaneous and open to new experiences and even quicker to laugh. I might still sweat the unimportant stuff – like ePortfolio, an exam, but I know deep down it’s kind of meaningless in the greater scheme of things.  Not that I haven’t struggled. I still have to deal with disorienting symptoms daily, and there are still days when I’m stopped in my tracks by grief. I still mourne the loss of the old Smizz. I constantly see my GP – like every few months, a plead with him that there’s got to be a way to stop feeling this fatigue, to stop feeling the pain.  Even so, I try and use all these experiences as a springboard.

I made the RADCARE radiotherapy Patient information app – which won an award. I won the Health & Wellbeing Student Award for Leadership, I’m quite proud that my patients seem to give really nice feedback about me to my mentors on clinical placement, I’ve drawn loads of stuff to help change patient experience, patient involvement, to engage people across the spectrum – from enhancing Prostate cancer care, to Dying Matters and the End Of Life Care Pathway, and now I’m going to Toronto – and Harvard over the next 2 months to learn more and bring back these experiences to see if I can begin to invigorate the pathways for better supportive care.

People always think jumping from art to healthcare is a jump. And perhaps it is. But I don’t really see it as that. In my many hours spent trawling through the internet looking for explanations, looking for things that can help with my pain/fatigue. I found that there’s a name for how I’ve built myself.  post-traumatic growth (PTG), a term coined by Richard Tedeschi, PhD, a professor of psychology at the University of North Carolina. Dozens of studies have shown that trauma survivors can change in profound ways. And it goes well beyond resilience, or bouncing back from adversity. “With post-traumatic growth, a person who has faced difficult challenges doesn’t just return to baseline, which is what happens with resilience,” explains Tedeschi. “They change in fundamental, sometimes dramatic, ways.”

Whilst I still mourn my old life, how I could stay up later and was pain free -and ultimately more care-free. I’m not super sure I would change it on reflection. I feel wiser, I feel more emphatic, I know what’s important – my family & friends, I’m less of dick now, I feel even more motivated to get out there to help others, I’ve built the most unlikely friendships – even with my doctors – and working in healthcare has opened up way more opportunities for my artistic practice than I ever hoped to believe. I never knew that actually now is the time to be a healthcare worker artist!

now I’m not saying every bad thing has to have a happy ending, acceptance nor do you have to oozze rainbows and sickening positivity – sometimes I think that can be counterproductive too. I think it’s finding meaning on your own terms to give you some ownership to the shitty things that happen that are ultimately usually out of our control.

When I won the award for my app – I felt a huge massive amount of pride. Something I’ve not felt in a really long time. And I think it’s because I designed it – with my experience in hand – with my patients stories in the other – with my passion for making things and wanting to help people. I wouldn’t be here right now if I never fell sick and my life changed in a way I didn’t want it to. I can still barely see where I am going, I’m still amazed I’m still on my course, that I’m still alive. I think I felt the pride because i realized that to get here I’ve had to trust myself, to learn from my bodies failure. To know that I have the bestest friends and family behind me 100% of the way in whatever I do. Because, like I said, without them anyways – i wouldn’t be here now – regardless.