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Chronic (sector) health and getting back our mojo

I’ve taken a step back in recent times from Twitter. Well social media in general to be honest. It felt like I needed to, but I couldn’t at the time articulate why. I have, for the large part of late 2018 and early 2019 been fairly unwell, so that’s probably the main issue. The stents have worked, but the nerve pain is new and that’s by definition more distracting than a well-practised pain with a 10 year heritage. Add to that a number of sick bugs from school (thanks kids) and basically I’m differently wonky with a hint of nausea. Anyway the thing you become aware of with any chronic health issue is how much of you it dilutes – everything is effortful, laboured and takes a disproportionate toll on whatever you try to do.

With social media, I was – I realise – getting utterly worn out by the continual stories about bad practice within the sector. Not tired of people telling the stories (they absolutely need telling), but tired of us seemingly getting no further past a sector-eats-itself situation. Stories abound about contract changes for REF / reluctance to employ early career researchers / systematic barriers to equality and diversity (etc etc) and the continued corrosion of research(er) wellbeing in the pursuit of rankings. In short, the sector is chronically unwell.

We seem to continue to find new and inventive ways to eat our young and marginalise those with less ranking ‘currency’. We’re increasingly legitimising universities as the sole dominion of research  (category A anyone?) and continuing to deify metrics despite epiphanies about responsible practice. We have re-paradigmed research through our various ratings system such that only dramatic step changes in knowledge (4* anyone?) are ordained at the altar of worthiness, and the peripheralisation of ‘smaller’ research, ‘lower level’ outputs and ‘limited effects’ is leaving so many in the sector feeling  overwhelmed, overlooked and undervalued.

This week I heard news of significant redundancies in my previous institution. Whilst I don’t know the details (nor the strategy on which the decision is based), I do know that as in so many other examples, good people are feeling betrayed. We all know there’s no Elysian Fields in which everyone gets funded and impact never dies, but for many, Dante’s inferno would be a more adequate metaphor. Where loyalty is penalised and territorialism rewarded. Where overwork is perversely incentivised and wellbeing reduced to tokenistic suggestions to ‘do more exercise’. Where stress and depression are considered unfortunate but unavoidable consequences, and where positive things happen only because good people keep other good people going. I maintain that we are enormously privileged in academia to have a voice and have the opportunity to make a difference,  but I’m hearing people ask more and more if it’s worth it.  Everyone is fighting so hard – often to stand still – and whilst it’s to their absolute credit that they keep going that isn’t sustainable strategically or psychologically.

My self imposed twitter detox has – in hindsight – reflected a sense of helplessness in addressing such pervasive problems. It’s perhaps no surprise that in parallel my professional attention has shifted significantly towards un/healthy practice in all its many guises and finding ways to rebalance things.  The sector voice is loud on the problems, and it’s time to step back into the ring and pick up the fight.

Ultimately this post is my weary, reflective and hopeful call for ‘better’. In whatever way that’s needed. Not shinier or bigger, but more decent and more meaningful across the piece. We all know the research landscape is complex, but we shouldn’t need to adopt a Hunger Games strategy  just to survive.

I’m professionally in a far healthier place, and hoping to re-find my twitter mojo soon, but for now my diluted energy is focused on trying to help salve a few things. The sector diagnosis might be chronic, but we’re not at terminal stage yet and that gives me enormous hope.

*Hugs it out*

J

Post Thrombotic Syndrome, Nice and me.

I’m sat in Nice airport having just spoken at an event where I was invited to speak about my (patient) experience of Post Thrombotic Syndrome. Basically if you’ve ever heard me mention ‘my leg‘, that’s shorthand for ‘veins-battered-by-multiple-DVTs-leaving-me-in-constant-pain-and-struggling-to-walk. Otherwise known as PTS.

Last year I had venous stents fitted – a fairly new(ish) procedure where stents are inserted into the veins to open them up and help blood flow. Many of you kept me sane whilst I stayed in hospital for a week having a ‘re-do’ when one blocked and I had to have my blood basically turned to water and another stent added as a fix. Firstly thank you (you know who you are), and secondly several months on it’s clear the stents are doing their job. I have some annoying ongoing nerve pain sure, but that hopefully may resolve when I actually get my backside back to the gym again and lose some Christmas-overdoing-it-with-chocolate weight.

Anyway, today I was part of a session about making ‘meaningful change’ (I wasn’t even there doing impact, but what do you know, it’s everywhere). I had the joy of speaking in the closing plenary with my nurse (the wonderful Vanessa), and meeting some fabulous Boston Scientific people (shout-out to the fabulous Jodie). It was a wonderful opportunity to stand in front of those working internationally to develop/sell technology (eg my stents), and explain what difference it can make. Not in terms of sales figures, or patency rates, or broad tones about quality of life, but in actual real human terms. All I did was tell the story of my life since 2008 (abridged, of course, albeit they had to see some of my holiday photos), the limitations PTS brings and the opportunities venous stents create. It was an immensely easy story to tell, but the reaction (apparently there were tears!) told me how important it is never to lose sight of the patient. What technologies and procedures and interventions mean to them. We can throw around whatever metrics we want, but ultimately it comes down to being able to take your kids to the park and be able to say yes to opportunities in life rather than no.

I was offered the chance to do the talk via video link (rather than take 4 flights in two days) but there was a very simple reason I flew to Nice and spoke in person.

Because I could.

Thank you stents.