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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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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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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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:

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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!

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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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.

 

 

Why the student NHS Bursary is important #BursaryOrBust

The Tory government believe that Nursing students (And I’m sure it will then lead onto other allied health care professional courses such as Radiotherapy, radiography, physiotherapy, ect) don’t need a NHS Bursary to help them fund their course and cost of living.

And  they’re so wrong believing this. It’s just another way to repress the NHS as we know it. And it’s bad for these reasons.

Firstly, I would never – EVER – have had the opportunity to go to university if I got no maintenance grant (for a normal – fine art course). I entered university in the first year  that tuition “top-up” fees came into play. Now, I had no sense of money so the debt didn’t really worry me too much.  And I still don’t have any money.  But I came from a family that had NO money too. I was brought up below the poverty line. No one in my family has any qualifications. There were about 12 out of my 6th form (of 250+ students) who went onto university in the area i’m from. Are you sensing all this lower-social-economic working class, less privileged stuff here?

My mom jumps from minimum wage temp job to temp job. Ruining credit scores after credit scores – but we get by. Thanks to door-step loans and borrowing from my nan  – back and forth.

When I went to university the first time – I kept a bunch of part time jobs, I had the summer to earn more money. I would wire my mom extra money to help her out too. I didn’t get ANY help. I worked in the USA on unpaid internships because I worked in the bookies in my spare time. I left university 4 years later with a debt of around £23,000. That was my tuition fees & living loan. I had also got a maintenance grant and a university bursary. And I can’t believe ‘normal degree students’ won’t get that in the future now either. I didn’t party too much, but I had to go to London a lot as part of my course and art materials and an art degree show is expensive to put on. But I made ends meet and I don’t ever remembering feeling like I was truely money screwed. But I lived in my overdraft. I didn’t care. It was free.

Fast forward to right now.

I’m in my last year of my 3 year Radiotherapy & Oncology degree. And I CONSTANTLY feel like I don’t have enough money to survive.

I’m doing this degree because after a horrific health experience I wanted to both give back to the NHS that has saved my life, and given me so much in compassion and help. It rocked my world-view. Falling sick changed who I was as a person and my old life just didn’t fit in the way it did before. But it was also really important to me to enhance patient care further,  to get rid of those moments of care where I felt misunderstood as a patient and not really listened to. Sometimes we all just need to be listened to, even if there’s nothing you can do about the issue at hand. And there’s so many systems and pathways that can be made so much better.

And so, I thought that the NHS could do with someone like me, someone who had already done work with patient experience, who can empathize what my patients are experiencing, who thrives on doing a great job and helping people, making things, and whose passion for social justice and a better society motivates everything I do.

But falling ill had made me even more strapped for cash. I couldn’t get out of bed, I couldn’t do my freelance job. I lost work, I lost hope. For a whole year. When I decided that studying radiotherapy would also be good for me as a coping mechanism and as a routine to get me back to functioning in the real world – to make me feel a bit human again and to understand the system that I loved and hated – i knew because my course was funded by the NHS I could ‘afford’ to do it. This was a hoop that wasn’t going to hinder me. I wasn’t discriminated against because I didn’t come from money.  If that bursary wasn’t there. I wouldn’t have been able to afford to do it.

But here’s the thing. The NHS Bursary barely covers living costs anyways. And they want to chop it?

Being a healthcare student isn’t like being a ‘normal course’ student. On my art course, we started late September, had a few essays, researched a lot, constantly worked (though this wasn’t logged) in the studio (realtively stress free) and you’d have a few assessments and shows along the way. You made it what it needed to be. As time consuming or dedicated as you wanted. We’d have a nice christmas break, and a nice Easter break. No exams. We’d break up for the whole summer around May time. And the cycle would happen again. I could work weekends if i wanted to because i did all my work during the week. I could work evenings because – well – i could go and work in the studio whenever it suited me. I had 4 months of potential time to save up from a part-time job and/or get extra experience in my area.

A healthcare course is much, much, much more and very different. We work 35+ hours a week on clinical practice. Helping patients, cleaning and setting up equipment, cleaning up patients,  letting them cry on you. You, as students, do carry quite a bit of the work – that keeps the NHS moving. But you’re being watched, constantly. You have this constant feeling of stress because you know you need something clinical ticked off, or you need to do more case reports, or case discussions/clinical examinations, you’re constantly being stretched and observed and building your professional knowledge, confidence and persona. And it’s not like the art studio, if I mess up – i can’t just come back to it, it’s someone’s life it’s affecting. Add 1-2 hours of commuting to work each way. And then time for cooking tea and tomorrows lunch. Then add on ALL of the academic work that you need to do that night and get up and go to work the next day again.

You have ePortfolio, exams, assignments after assignments, clinical competencies, IPE, dissertation, more exams. And you work ALL summer too. No Camp America for you. This is all on top of 35+ hours. But guess what, if you was doing a business degree, or a marketing or computer science degree with a work placement – You’d be paid for your work placement. What about us?

What about this Bursary?

Unlike normal degree students – healthcare students get sent across the region and the country for their clinical practice. They can be in Doncaster one placement and then in Sheffield the other. On my course people can be placed as far as Newcastle and Leister. Commuting from your house in Sheffield to Newcastle is probably going to be a no go. So guess what, you have to pay for 2 rents – often UP FRONT – out of your own money. But get this. That NHS Bursary barely covers your Sheffield rent anyways. Where are you going to get this extra cash from? How are you going to eat? How can you afford the bus to work? Sometimes it’s just cheaper to rent a place then it is to actually take public transport (which is pretty horrific) If like me, you’re just a poor kid from the Donx, whose mom can barely pay her own rent anyways, where do you get this extra money from? What happens if you’re a parent? What do you do then?

Then lets consider all this academic work on top of your clinical placement rota. Each 20 credit module equals 200 hours of study or teaching. Since you’re on clinical practice, that 200 hours is your own study time. But you’ve already worked 8 hours that day, you get home around 6-ish if you’re lucky. You need to do that work. What employer is going to be that understanding of your dodgy work pattern? And you’re probably going to be REALLY tired after finishing a whole day of clinical placement ontop a whole shift at Boots,  then go home and try to do some ePortfolio and do this ALL again. And people DO IT. That’s not the debate. But could you do it if that bursary wasn’t there at all? i don’t think so.

When you get a NHS bursary (which FYI is at the most around £380 a month) you don’t get any extra help from the university like you do on a ‘normal course’. You’re exempt from quite a few hardship funds in place within the university. And student loans will only lend you up to £2,200 a year – max. You have to work clinical placement all summer remember too.

Then lets consider all these extra costs which you won’t think about.

Your uniform has to be clean on each day. That’s 5 days of washing straight up. It’s white – that’s an extra load of washing. If you’re living in student accommodation – your washing is going to run you around 5-10 extra pound a week. You’re working all week,  and there’s something about clinical placement which makes you WAY more hungrier than in real life. And hospital canteen food is ridiculously expensive – so you have to plan ahead and pay extra in your food shopping to run the costs of a decent packed lunch to get you through the working day. There’s all the extra things too. You want to be ahead of the game for ePortfolio and job hunting – you need to go to conferences – often way expensive – even for students. But that’s part of your professional conduct and identity. Then you have your normal course costs. Really expensive course text books.

Then if you’ve survived all of this, and get to the end of the course and want to get a job. You have to pay for a licence to practice and a membership to your college of your profession to ensure you have insurance – before you’ve even got a job, a pay-check. This is around £380 before you’ve even started. I have no idea at this point where my money will come from to pay for that. We’ll see.

I’m lucky because I’m poor I get the full bursary. Others aren’t but their parents don’t help them out because they can’t afford to either. Many student accommodations are over £4000 a year rent now, which is more than your years bursary.

I work as a freelance artist so most of the time i can work within my own time-frames. However my health still sucks balls. I struggle with fatigue like you wouldn’t believe. So often I get home, and all I do is sleep. It makes doing my school work even harder on top of trying to do freelance work too. But I consider myself one of the lucky ones.

Others aren’t that lucky. Despite having my bursary and working my freelance jobs – i’m talking many jobs too – I barely make ends meet. I’ve ruined my credit score on this degree even further than before. I’ve got to the end of my over-draft and even had my card declined. That never happened to me before. But it’s because I’m paying up front for rents, for train tickets for clinical placement. For food that’s not covered by my loans.

Healthcare students don’t fit your normal format. Most enter the degree much older than your average student population. Many have children and family. They need this bursary. They too probably already have a degree like me. Their story is probably similar. They saw a loved one close suffer dilibertating illness that inspired their calling into healthcare; after having children they wanted to become a midwife; or sometimes they just needed time to mature to discover their true calling.

The NHS treats a population as diverse as you can imagine, and it needs staff that represents the population it is treating. We don’t want a select few who can afford to take on the debt or that their parents will pay everything for them. We want them as well as the people who know what it’s like to be down and out on your luck, who know what it feels like to suffer in constant pain, who have children and know what a parent may be thinking, who know how tough times are. We need people who are compassionate, and creative and passionate and brave. And I don’t want them to be priced out.

My mom has always brought me up with the belief that I shouldn’t make money a barrier. This has hindered me in different ways  – like buying things I shouldn’t have because I can’t really afford them – but not everyone is brought up with that belief and some people don’t have the emotional or financial support to be able to take a leap and do a course without any Bursary help.

You wouldn’t expect a kid to pay for their apprenticeship- you give them a terrible wage (which FYI- apprentices need to be paid more too). Nursing students, like all healthcare professionals DESERVE a LIVING WAGE. The bursary isn’t a living wage. But it’s something. Taking that away is disrespectful, it doesn’t acknowledge the hardwork and the goodwill that comes with the healthcare courses. The NHS does benefit from students. We don’t ask for much because we’re passionate about making the system better, about caring for society. It’s NOT about money. EVER. But this is forcing people not to have an opportunity, and potentially change the face of the NHS.

The consequences of not  having a NHS bursary in nursing are SO much bigger than you’d ever think on first inspection. We’ll loose our social mobility of the profession, the career progression, the mentorship, we’ll loose people applying for the course, and have a shortage ina  time that’s already suffering a shortage.

It’s bad news. And it’s not what the NHS stands for. That’s why I am standing with Nurses and all healthcare workers – for both the junior contract and the student nurses bursaries. We’re all one in the NHS. We work across professions and care for our patients and their carers and we need to look out for one another too. To the future of nursing, and all healthcare professions, and our care and the NHS.

 

 

What does a radiotherapist do and how it’s given me life advice for the future #worldradiographyday

I often get asked, “You *just* take x-rays, right?” When people ask what I do and I say, “Radiotherapy”. (I do – in fact – take some ‘x-rays’ but that’s not my main-specific role).

Sometimes they know a lil’ bit more and ask, “Soooo, you *just* set up the machines?” (The machines are these 1 million pound things called linear accelerators). Like that’s all we do, “set-them up”.

But I love telling people what radiotherapists do and i love it when people want to know more. We’re the somewhat misunderstood colleagues of the radiography world. We’re not radiologists – we don’t interpret your scans and diagnose from there, we’re not diagnostic radiographers you see for an X-Ray when you fall down the stairs.

We’re the people you seem to only learn about after you’ve seen our other radiography colleagues and if you have cancer (or some limited benign conditions) in yours or a loved ones life. Some people luckily have no cancer narrative in their past and come across our profession from twitter/internet, others from university prospectus books, their love of physics and imaging. Occassionally if people are on it, we get some national coverage.

Radiotherapy is a cancer treatment that about 40-50% of people diagnosed with cancer will have as part of their treatment. It can be used to reduce symptoms, and most importantly: pain. It’s often a curative, cost effective, and often non-invasive treatment.  And how we do that is by generating a plan of treatment.  That plan aims to deliver a high dose of radiation  over a series of fractions (days) (generated usually by high-energy xrays [photons]) targeted at the tumour extremely precisely, and any microscopic disease (GTV*, CTV* & PTV*) and any lymph involvement as specified by the doctor.

We don’t just “press a button” or “set up the machines”. We have 3 years training specifically within oncology to begin with. We learn all about cancer, radiobiology, cells, immunotherapies, chemotherapies, surgeries, staging systems, global health, prevention, end of life care, person-centered-care, psycho-social issues, financial implications, ect. We learn  all about radiological physics and imaging and some basics on imaging engineering. We constantly keep up to date with world-class research. Then we spend months & months on clinical placement, for 3 years, including all summer, critically reflecting, learning to effectively collaboratively work together, learning how to deal with life and potential problems and techniques and protocols specific for your center, specific for each person and their cancer. Basically, we’re properly specialized in clinical radiation oncology.

Pre-treatment

We work in ‘pre-treatment’. Here is often the first point of contact that the patient has with a radiotherapy department after being diagnosed and a course of radiotherapy is prescribed. We try to put the patient at ease, give them a first day chat letting them know what we will be doing and any questions they may have, let them get to know us for a bit, and we visually and through asking questions assess how the patient is and any needs they may have. Sometimes they have to have specialist immobalization made such as masks, and radiographers do this too.

We figure out the best position for their treatment, and make sure its as comfortable as it can be to withstand weeks of that position, whilst ensuring its reproducible and stable. We generate all the ‘set-up’ information for their treatment: their position, making sure they’re straight, not rotated, that our set-up position is in a stable location, where we decide to put some ‘tattoos’. Always assessing, always analysing. Then we do a planning CT scan – much like diagnostic radiographers would with the patient in this position. It always has to be a CT (though we often fusion images together such as PET & MRI) as CT gives us tissue density to plan each beam/field effectively.

Planning

From here after the image has been contoured (Organs at Risk [OAR] & tumour being outlined) by the doctor (some places the radiographers do it too) radiotherapists plan where each field goes. They have to get rid of any hot spots, make sure all the tumour and surrounding margins have a 95-105% dose homogenous dose coverage whilst avoiding near by healthy tissue. It’s not the easiest task and each persons body is completely different. How exciting right?

Checking & revisiting

From here that plan goes to physics to be checked, then back to the doctor. Some of these plans will be discussed in Multi Disciplinary Team meetings with doctors, radiation oncologists and radiologists, physics and radiotherapists. Once satisfied, the plan and set-up sheets, and prescription gets another double check – by 2-3 radiographers. This – from start (CT planning scan) to fully planned and checked is about a 2 week process.

On Set / treatment

Then it’s time for the patients first official day on treatment. We check everything, look at the wedges, the monitor units, think about where the patient will be on the bed and the angles of the beams. Many more verification techniques happen here. We get the patient on the bed, after giving them another first day chat and looking after their skin and side-effect advice, guide them into that same position, make sure they’re straight and not rotated. Use those tatoos and set-up sheets to guide us. We check SSDs, positions, angles, we take images to verify and image match. This is that bit where we ” *just* set-up the machine”. Once we’re happy with everything and again double checked everything from patient ID, and RR numbers to monitor units and angles and beams and fields and position and much more. We press that button and deliver that life-saving treatment.

But what’s just as important as checking our images, checking everything else is correct and safe. Is that our patient is OK !!

Treatment day is another huge milestone for our patients and their loved ones. Often, because radiotherapy is so under advertised and unknown about, or the media portrays it wrong and factually incorrect – our patients can be really nervous/anxious. What is this Linear Accelerator? What exactly DO WE DO?! Will it hurt? Does it burn my skin?

This is where the radiotherapists great person-cenetered skills come into play. It’s my favourite part of the job. It really makes my day when you’re able to establish a rapport/trust with one of your patients and make them feel better/more at ease. Often it’s just letting them tell you their story. It’s often been a difficult path to where they are today. Months and months of being undiagnosed with symptoms that took ages to pin-point. A bad chemotherapy reaction, trying to juggle work and picking up their kids, the 2 hour drive to the hospital from their house, ect. It takes time and empathy to be able to get this person to trust you and your team. You get to share your knowledge to put their worries at ease. And this is the best part of the job for me.

Unlike most of our other radiography colleagues, we get to see our patients every single day for their treatment. This could be every work day for 7 weeks! That’s quite a long time. It’s exactly the reason why I specifically chose radiotherapy. I wanted a healthcare profession where I could get to know my patients. A lil’ bit like a GP has the potential to do so.  How that continuity of care enables you to easily see any change in the person who might not let you know something is wrong. How each day you peal another layer over, you slowly find out who they live with, do they have any pets, their intricate details of their lives, honeymoons, holidays, work. I’ve treated gold-medal winners, people who run magazines, who owned planes, who volunteer their whole spare time for the most vulnerable. You hear some stories that will stay with you for the rest of your life and there’s people who you’ll think about months later. There’s some stories that you feel in the pit of your stomach, and there’s moments of pure joy that nothing will compare to. You’ll learn these details and it helps you make some assessments. Is this person frail and has no one at home to look after them? Can we get them some clean clothes? Can we refer them – ask if they want to see someone for specific type of support (complimentary therapies/financial advice ect). You can figure out if they’re following your side-effect advice or not. There’s a lot of potential for radiographers here to make a huge difference to someone, and i love that responsibility.

Service Improvement & research

And then there’s another cool thing radiographers do. We can use our practice to implement service improvement changes or undertake & create world-class-life-saving research. I see the future of radiotherapists moving more into preventative, on-going-care and recovery/post-treatment care.  I’m so passionate about us helping to support our patients and their loved ones. The health-gap is going to be one that continues to grow under our ever growing unfair and unequal society. And cancer – the diagnosis and the survival-rates of it – is a product of the gap. I believe we will see more radiographers moving into this discourse and helping our patients live a better life – during and after treatments. Survivorship can be so rocky, so it’s a given that with all our specialist knowledge that we should enable to help commission, produce and create services that can support our patients.

Being a radiotherapy student isn’t easy. It’s very full time, there’s a lot of different skills to master, juggle many types of work from clinical knowledge to academic stuff; you have to become a commealian – you adapt yourself to which ever team personality you’re working with. You need to master time management (I’ve not fiigured this out yet). I found I take longer to do the more technical stuff – I believe this is because as an artist I’m not used to thinking so routinely and logically. I’m having to retrain my brain – but I love the challenge. And after those great weeks you have on clinical placement, when a patient is so thankful, when you put someone at ease – made them laugh. It all some how feels worth it. You go home with a warm fuzzy feeling. It’s kind of indescribable. By the end, because of the continuity of care – it’s like you’re treating old friends.

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 as I read somewhere: 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.

HAPPY WORLD RADIOGRAPHY DAY.