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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

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Sausages, unicorns and strip clubs. Or Impact: the challenge of connection

I was delighted to ask to speak about impact at the PraxisAuril conference (Liverpool, October 4-5th 2018). The Knowledge Exchange Community (KEC) and Research Management (RM) community overlap so strongly in the impact space that opportunities to draw the two closer are always welcomed. This post summarises the talk (slides available here).

First things first, what do we mean by research impact? If we look at various definitions underpinning funding (eg UKRI) and assessment (eg REF) they ultimately coalesce as the ‘provable change (benefit) of research in the ‘real world’. That is, effects of research which are felt beyond the academic walls. Accordingly it is measured by indicators of change outside of the university, and not by markers of academic interest or publication attention.

But let’s put in some clear caveats: there’s no one size fits all, and as a community we must as be sensitive to unscripted biases. For example, the shorthand to ‘benefits’ overlooks the perspectives by which all change is seen. What is good to one person may be bad for another. For example, reducing gambling is brilliant for society, less so for casinos. Similarly within arts and humanities, effects may be less directional and may aim towards disrupting archaism or challenging mindsets. Research which is diffused into the public arena (rather than having neatly targeted beneficiaries) will also always feel the extra weight of demonstrating change in an audience it can’t quite see. More fundamentally, the forced definitional division between academia and non-academia (‘real world’) must be used to understand where effects are felt, not to elevate or disconnect academia from its community home. So whilst definitions and shorthands are useful, they can not and should not be used as blueprints for impact irrespective of discipline or topic.

In the talk I reflect on 6 key lessons about impact:

1. We are all custodians of impact; we each have a piece of the puzzle

Impact is not the domain of one person or one part of the research landscape. Impact is a brokered, negotiated and connective art, achieved by and for people in a myriad of ways. And it’s a team game. We each have skills, perspectives, experiences, networks and ideas which can contribute to an impact cauldron of possibilities. By recognising which parts of the impact journey we can each support (as academics, research managers, KEC professionals, communicators, strategists, funders, publishers (etc) the big picture becomes far easier to see. For this we need to develop our impact literacy (download Emerald Publishing’s Impact Literacy Workbook here).

2. We often speak different languages

‘Impact’ is of course not a new word (although admittedly the tone has historically been one more akin to meteoric crises than research assessment). In recent years however impact has been catapulted into our collective consciousness as an important ‘thing’, but without necessarily a unified sense of what ‘it is’. Impact is often used both as a blanket term for the influence of an institution, and for the necessarily narrow contents of a REF case study. Without heading down deep philosophical paths about what it should be, the net result of blurred definitions is that we talk at odds thinking the other person knows what we mean. We end up accidentally pulling in different directions and watching impact potential drain from the space between us.

3. Impact case studies show the sausages, not the sausage factory

Sector wide communiques about impact (such as the REF 2014 impact database) share one key feature: they only show the wins. They don’t show the paths which didn’t play out, the contracts that weren’t signed, or the audiences that didn’t show. They neatly omit the blood sweat and tears of fighting for new partnerships only to have the company bought out at the last minute. Exalted cases are those which got through impact boot camp and found themselves presented shinily on the impact stage. If we only use these incredible examples to understand how impact works, we will never learn from what didn’t or appreciate that it’s ok for impact not to be perfect.

4. We need healthy, connected institutions

Just as we need to recognise individual contributions to impact, we need to ensure our institutions – which are invariably so complex – purse impact healthily.  We need to invest financially and culturally in impact, and focus on:

  • Commitment – The extent to which the organisation is committed to impact through strategy, systems, staff development and integrating impact into research and education processes.
  • Connectivity- The extent to which the organisational units work together, how they connect to an overall strategy, and how cohesive these connections are.  
  • Coproduction – The extent of, and quality of, engagement with non-academics for to generate impactful research and meaningful effects.
  • Competencies– The impact-related skills and expertise within the institution, development of those skills across individuals and teams, and value placed on impact-related specialisms. 
  • Clarity-How clearly staff within the institution understand impact, how impact extends beyond traditional expectations of academic research, and their role in delivering impact
  • For more on institutional health and to assess your own institution download Emerald’s Impact Institutional Health Workbook here).
  • 5. We have a tendency to chase impact unicorns.

    I’ve spoken about this before, but it’s absolutely worth saying again. The weight of expectation for impact risks mythicising high level impact to the point of meaninglessness. I’ve seen academics tearful after being rebuffed for only achieving national policy change. I’ve myself been advised to bypass work with local vulnerable communities as REF would need larger scale effects. And I’ve seen institutions plan to spend hundreds of thousands on equipment because ‘some of the four star cases had a scanner’. Whilst it’s of course challenging for institutions to balance meaning with pursuing investment for their sustainability,  we need to recognise the implications of pursuing big effects expense of meaningful smaller changes. This is always encapsulated for me by the wonderful Derek Stewart who remarks that – during his treatment for throat cancer – he also just wanted to be able to swallow. Swallow. Such a simple but meaningful change which could be so easily obscured if we only gaze at the fantastical horizon.

    And finally,

    6. REF, done irresponsibly, is like a strip club. Some people go in with money, some leave with money, and everyone feels a bit dirtier. I think I’ll leave that point there.

    Ultimately if we want to optimise the benefits of research, we need to connect expertise and centralise meaning. So, if impact is the challenge of connection, imagine what we can do if we work together.

    Acknowledgements to Dr David Phipps, Emerald Publishing, Derek Stewart, University of Lincoln, ARMA and INORMS RISE group

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    An impact literate approach to health psychology – notes from the DHP 2018 impact session

    Thanks to all those who came to the impact literacy session at the Division of Health Psychology Conference (Friday 7th September, 2018). References to everything discussed in the talk are below.

    IMPACT LITERACY AND SKILLS

    Impact literacy workbook and Impact Institutional Healthcheck available at https://www.emeraldpublishing.com/resources/

    Bayley, J.E. and Phipps, D. (2017) Building the concept of research impact literacy. Published online in Evidence & Policy Available online http://www.ingentaconnect.com/content/tpp/ep/pre-prints/content-ppevidpold1600027r2

    Bayley, J.E, Phipps, D., Batac, M. and Stevens, E. (2017) Development and synthesis of a Knowledge Broker Competency Framework. Evidence and Policy. Available online https://doi.org/10.1332/174426417X14945838375124 (OA version: https://pure.coventry.ac.uk/ws/portalfiles/portal/7270403/PRE_REVIEW_Knowledge_Broker_competencies_for_repository_OPEN.pdf)

    REF

    REF 2014 impact case study database – http://impact.ref.ac.uk/CaseStudies/

    REF 2021 guidelines – http://www.ref.ac.uk/publications/2018/draftguidanceonsubmissions201801.html

    MODELS AND FRAMEWORKS

    Buxton, M., & Hanney, S. (1996). How can payback from health services research be assessed? Journal of Health Services Research, 1(1), 35-43

    Donovan, C. and Hanney, S., 2011. The ‘payback framework’explained. Research Evaluation, 20(3), pp.181-183. Available at http://jonathanstray.com/papers/PaybackFramework.pdf

    Phipps, D.J., Cummings, J. Pepler, D., Craig, W. and Cardinal, S. (2015) The Co-Produced Pathway to Impact describes Knowledge Mobilization Processes . J.Community Engagement and Scholarship. See http://jces.ua.edu/the-co-produced-pathway-to-impact-describes-knowledge-mobilization-processes/

    Michie, S. Atkins, L, and West, R. (2014). The Behaviour Change Wheel: A Guide to Designing Interventions. London: Silverback Publishing. See www.behaviourchangewheel.com

    Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50, 179-211. Further information available at http://people.umass.edu/aizen/tpb.diag.html

    Bartholomew-Eldredge, L.K., Markham, C.M., Ruiter, R.A., Kok, G. and Parcel, G.S., 2016. Planning health promotion programs: an intervention mapping approach. John Wiley & Sons. Further information at https://interventionmapping.com/

    Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal, 337, a1655 Available online https://mrc.ukri.org/documents/pdf/complex-interventions-guidance/ NB UPDATED GUIDANCE WILL BE OUT IN 2019

    MY BLOGS

    Avoiding imposter syndrome and impact

    Chasing the impact unicorn

    (Impact) life beyond REF

    BROADER READING AND RESOURCES

    Responsible metrics: www.responsiblemetrics.co.uk

    Open Access via Unpaywall add on : unpaywall.org

    CASRAI (information standards) https://casrai.org/

    Analysing REF case studies: https://www.kcl.ac.uk/sspp/policy-institute/publications/Analysis-of-REF-impact.pdf

    London School of Economics blog http://blogs.lse.ac.uk/impactofsocialsciences/

    Evidence and Policy journal  https://policypress.co.uk/journals/evidence-and-policy

    Research Evaluation journal  https://academic.oup.com/rev/

     

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    A very impact’y INORMS 2018

    And so we’ve had INORMS. What a week. Frustratingly I spent whatever time I wasn’t impact’ing limping slowly between rooms or collapsed in a heap. Thanks to all who helped out in various ways.

    After the ARMA conference I routinely write a blog summary of the Impact Special Interest Group (SIG) session (see those from 2016 and 2017). However this year’s event had a different flavour. Firstly it had the glory that is David Phipps front and centre (after his fantastic plenary). Secondly it had a wonderful international dimension which broadened impact discussions and allowed us to briefly invent ‘impact tinder’…..

    So instead of a SIG review, this post picks up three key headlines from talks and discussions with impact colleagues across the week:

    1. There’s life beyond the ‘EFs

    It’s probably fair to say that the UK impact community operates in a fairly ‘assessment-led’ context much of the time (not of course ignoring impact within the funding space).  The Research Excellence Framework (REF), especially as we get nearer to the 2020 submission date is looming ever larger, and the flurry of impact officer jobs in recent weeks perhaps pays testimony to the weight this holds for institutions. This said, of course impact is not just REF, and many colleagues – speakers and delegates alike – spoke hearteningly about meaningful connections to practice irrespective of formal requirements. Discussions about funders, REF, TEF (Teaching Excellence Framework) and the incoming KEF (Knowledge Exchange Framework) reflected balanced caution between welcoming the broadening of agendas against increasing administrative burden. Dialogue with our international counterparts who don’t have, or are yet to fully cement an assessment agenda, refreshed our minds towards research for social benefit full stop. The more we connect cross-nationally, the healthier our practices will be. The challenge is to ensure that the appetite to ‘make a difference’ – which sits so fundamentally within the impact community – is not overshadowed by powerfully selective agendas.

    NB: For reference I am by no means anti-REF, and have said before I’m very thankful for the platform it’s opened up to recognise the importance of applied and translational work. My concerns are always about REF being used to disincentivise valuable ‘but not competitive’ practice (eg. bypassing local connections for more lucrative national partners),  amplifying the publish-or-perish mantra with irresponsible metrics (eg. arbitrary impact factor rules) and contractual consequences for poor performance. It is the collateral damage to research, impact, careers and wellbeing that I, like many of us, find so heartbreaking in practice.

    2. Healthy contexts and connections are key.

    As we all know, impact is not an effortless result of successful dissemination. Yet across the sector we still face the challenge of disrupting simple conceptualisations of impact and overturning default reliance on longstanding measures such as publication metrics. For this, individuals and institutions need to work in sync, not in conflict to embed healthy practices (institutional health slides available here). It is not enough for individuals to build their own impact literacy, as unless this is supported by healthy institutions,skills development and sector-wide messaging, good practice and good intentions will just corrode over time.

    A related and continued concern is that REF within institutions is reduced to a discourse of compliance. Within the impact community we’ve had multiple anecdotes about impact officers being told to just ‘make people do impact’, ignoring the sheer scale of tailored translational effort this requires. It overlooks the skills and expertise needed to drive a REF submission, and risks treating REF managers as unskilled ‘REF monkeys’.  Quite on the contrary, managing any element of a REF submission requires extensive knowledge, partnership working, resilience and incredible organisational skills.  A compliance-led culture not only does a considerable disservice to those in these roles, it reduces buy-in by academics to the process and fundamentally undermines REF itself.  Joyfully there are many examples of healthy, connected and committed practice within institutions, where staff are valued and skills recognised.  As we scale up impact agendas internationally, it’s crucial that these healthier models form the basis of institutional practice.

    3. We still have a lot of lone wolves.

    Impact is a team sport. It can only happen when people work together to connect research to practice. This involves researchers, impact managers, communications specialists, information managers, stakeholders, beneficiaries and many others.  Insights into co-production, creative connections between universities and communities, and broader discourse around public trust in science remind us of both the challenges and opportunities for brokering work beyond the academic wall. However whilst I use the term ‘impact community’, it’s also very apparent that many of colleagues still work in isolation. These lone wolves often shoulder the weight of impact delivery across an department or even institution, and can feel disconnected from peers. Cross-institutional connections, improved alignment of teams (not just additional committees) within the institution and a broader programme of training and development must be central moving forward.

    Finally it remains a huge privilege for me to not only be a part of, but able to champion the impact community. It’s incredibly easy to extol the virtues of not only those in the UK,  but also our global peers when the commitment to driving benefits is so clear to see. Of course this short blog post can’t reflect the depth of discussions about balancing accountability for public monies with academic freedom, nor can it capture the wealth of discussions held during INORMS itself.  But it does bear witness to the investment of thinking, time and skills by so many in the sector to drive research meaningfully into practice. And I don’t know about you but that fills me with optimism for the future.

    INORMS 2020 is in Hiroshima; imagine how far our collective approach will have got us by then. *Smile*.

    Slides from the SIG are available here and the Impact Literacy and Institutional Impact Health Workbooks are available here.

    Particular thanks to Anthony Atkin for his gazelle-like microphone management; Laura, Tony, Vicky, Harriet and John from Emerald for continued support and not punching me when I get so impact-exciteable; David Phipps, Jo Edwards, Dace Rozenberga, Esther de Smet and Lorna Wilson for being legends; the Lincoln crowd for being wonderfully  welcoming; and a large army of others for making the annual conference yet again a fantastic event. Cheers!

    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.

    Avoiding impact imposter syndrome; lessons for first class impact

    (I just remembered this when looking through my files…..originally published by Research Fortnight…….still rings true)

    As I write this, I’m sitting on a train. I won’t lie, I’m in first class. Admittedly it’s because I stumbled on a great advanced deal, but whatever the reason, my mum is still taking this as a measure that I’ve ‘gone up in the world’.

    Around me are a lot of people in suits, lifting their sparkly smartphones to their ears and – largely speaking – impressively balancing passive-aggression with the art of barking orders at junior staff.  The main thing that strikes me is that they seem to know precisely what they’re doing. They have that clear authority, directive (read *ballsy*) communication style and the presence that says ‘don’t interrupt me, I’m overseeing the sale of a small island’.  Sitting here trying not to betray my ‘only here because I got a good deal’ status, I am reminded that it’s very easy to fall into the trap of feeling like an imposter.

    Sitting with that blank page to plan impact can feel like stepping into the first class carriage for the first time; not quite knowing what to do, trying to avoid accidental faux pas, and attempting to display enough gravitas to appear native. The introduction of impact to the Research Excellence Framework (REF 2014) compounded this by rapidly shifting expectations for ‘real world effects’ from applied research to all disciplinary areas.  Whilst universities have been galvanised into more strategic approaches to impact, researchers still face the challenge of establishing just how impact fits with their own work. Watching how people enter the impact carriage is telling. I’ve had people in tears because they feel so completely underequipped to plan impact with something as important as a grant at stake. Conversely I’ve had others bluntly assert their personal exemption because impact is something ‘other people do’.  Generally most people fall somewhere in the middle, seeking to ‘do’ impact in a way that – quite justifiably – fits their discipline, research paradigm and overall ethos on the practical applications of their field of investigation.

    In my experience, the REF-led impact-as-assessment rhetoric can taint planning at the funding stage.  It’s easy to overpromise, be unrealistic and guarantee to change the world on a single project because that’s what impact is presumed to be.  Fact: it’s not.  Of course there’s a desire to make big changes, but the smaller, direct benefits of a project (eg. ‘improved NHS staff knowledge’) are crucial milestones along an impact pathway towards bigger, longer term goals (e.g. ‘improved patient wellbeing).

    One of the biggest and most pervasive errors at the planning stage is that of poorly thought out relationships between the project, activities, outputs and stakeholders. It’s so easy to accidentally ignore or mask the ways by which impact occurs, undermining the realism, achievability and meaningfulness of any plan. So if you’re facing an impact blank page, I’d suggest – alongside talking with impact specialists in your institution and using online resources (e.g. http://www.esrc.ac.uk/research/impact-toolkit/ – you take a step back and think about the following:

    How does your research connect to a (the) bigger problem? All too often we assume – because we ourselves are so invested in the topic area – that the need for the research is obvious.  But it’s vital to fully outline the related non-academic problem and articulate how the project contributes towards a change.  Be clear on the direct results (which you can create) and how these may enable longer term benefits (which you can’t guarantee but you can make a realistic prospect).

    How are you connected with the real world For research to escape academic captivity, you need to escape too. Build links (networks) with those who can shape, advise or use your research from early in the process. There’s no surer-fire way of annoying the pants off a potential beneficiary than rocking up at the end of the project to tell them what they need. And no, in this context, academics do not count as real world people. However lovely they are.

    How do your activities connect with your impact goals? (tagline ‘lose your inner diva’) . One of the easiest traps to fall into is to name drop, jargon-drop or be so devoid of sufficient detail that you expect the panel to accept your impact will happen simply because you’re awesome. Phrases such as ‘the team are made of well respected experts’ may offer credibility to the project, but they do not deliver the realism and achievability needed for impact plans. Similarly broad statements such as ‘we will run workshops with users’ convey little more than ‘we know real people should be spoken to and we know where there’s a room available’.  All it means is that you have a context which is conducive to impact. It says precisely nothing about what you’ll actually do or, crucially, why.  The reviewer needs to be assured that you have chosen activities for a reason, so express your reasoning – ‘The team are made of well respected experts, which allows us to draw on a series of established networks’, and ‘To engage our key user demographic and gather vital feedback on implementation plans, we will run workshops with users’. Makes all the difference.

    Have you connected with people who’ll challenge you? Impact needs critical friends – colleagues and stakeholders – who will force you to think beyond the academic merit of the work.  Impact isn’t about grandiose narratives, it’s about understanding what people need and designing achievable routes to get there. Find people who’ll make you justify things.

    Have you connected the change to the measure Planning the evidence of impact is far easier when you know what kind of changes you’re looking for.  Think through (i) what you want to/think will change, (ii) how you will know a change has happened, (iii) how you could measure or qualify it, and (iv) what evidence you could get to prove it.  Setting this up from the start will make your life a lot easier.

    Have you connected your aims with those of the funders? Don’t forget the funders aims, especially when you’re rushing to meet a deadline.  They’re crucial to connecting your project with the bigger (and often impact-focused) aims of the funder/scheme. Go check!!

    Remember – impact can’t be templated or prescribed.  Go back to the reason your project is important. Your efforts in the research stage can really help improve someone’s life, even if it’s several steps in the future. And don’t worry about that first class carriage. Everyone there had to step onto it for the first time once too.

     

     

    This isn’t about impact….but it could be a big change for me

    This isn’t about impact….but it could be a big change for me

    This post isn’t about impact. Feel free to step away……

    I’ve spoken about it before, but for those who don’t know, after a major DVT in 2008 – and subsequent ones in 2010 and 2016, I have lived with post thrombotic syndrome (PTS) for the last decade. And with its awesome mix of constant aching, leg swelling, heaviness (all exacerbated by walking, standing and sitting and basically normal life) I’ve spent every day of the last 10 years in pain. Some days mild enough to only cause problems when trying to sleep, others so intense it’s left me crying on the floor from the second I wake up. It’s required a constant set of mental calculations to work out the shortest number of steps between any A and B and weeping at the bottom of stairs when lifts are broken. I have a continued and deep guilt having to say no again and again to my kids when they want to go to the park. I’ve joked about being a pirate because it’s easier to do that, but I forget my boys have never known me well. Basically clots aren’t fun and someone clever should ban them.

    As I write this I’m waiting in a hospital room (well ‘on site accommodation’ to be pedantic) ahead of surgery tomorrow. If you’re a fan of medical programmes you’ll be interested to know I’m having stents fitted in my veins to try and fix things. If you’re not a fan then you’ll hate the thought of all this anyway and will already have stepped away from the screen.

    Having had to ‘use my leg’ today I’m currently collapsed in my room waiting for the ache to go. But for the first time I’m struck by a real sense this this might change. That this could actually be my last day so ‘damaged’. Don’t get me wrong I’m not getting ahead of myself, it might not work. But it could. For the first time since 2010 (ill-fated bypass surgery) I have the prospect of ‘better’ which is a genuinely odd feeling. I might be going home later in the week with a working leg, and that is an incredible possibility.

    Updates to come…..

    UPDATE at 21.15

    Whoop I’m alive, so that’s fairly nice. Don’t know details of surgery success yet as no chance to have a ‘debrief’ but from what I understand all went well. I have no idea what it means for my mobility, and at the mo am aching enough to care more about finding a comfortable position.

    But after a day of ‘being a patient’, two things are clear:

    1) Patients wait. A LOT. And not just for procedures – for information, for clarity, for contact. It’s immensely easy for patients to feel lost in the system simply through lack of comms.

    2) It is impossible to be either dignified or glamorous in surgical stockings and tethered to a compression machine.

    More anon….

    UPDATE FRIDAY 29th JUNE

    I’m home. Whoop! Blood flow sufficient to be discharged, so after a mix of trains and taxis last night I’m back on my sofa. Very achey and feeling very post-op’y but hopeful it’s all worked. Time will tell!! Thanks all for lovely messages :-))