The psychology of being a patient with a chronic vascular condition. Or ‘the joy of DVTs’

Many of you will know about my health fun and games. And by fun and games I mean multiple deep vein thromboses (DVTs), those cocky little blood clots that keep colonising my left leg. The saga can probably be shorthanded to ‘9 years ago my veins decided that blood flow was overrated and shut up shop’.

Flippancy aside, the chronic pain and mobility difficulties have been horrendous, not to mention the impact on my family. And I’ve lost count of how many times I’ve ended up sobbing mid conference because of the pain of just ‘sitting’. Thankfully, overlooking the ‘unexpected clot incident of 2016‘, I’m generally far more mobile and my limp takes longer to kick in. And my walking stick now only gets broken out for special occasions.

Anyway fast forward to June 2017. I’ve been given the name of a fantastic specialist in London whose expertise may actually help fix me, when it seemed unfixable. (Spoiler, we still don’t know if it is, but let’s hope Thursday’s MRI scan shows something positive). I go for a consultation (which led to the MRI) and the discussion takes an unexpected turn. My consultant is concerned about how psychologically and emotionally difficult vascular problems can be for patients and and invites me (as a Health Psychologist) to help. Somehow.

The first step has been writing an invited commentary for ‘Venous News’, the professional magazine for vascular practitioners. This has been a chance to headline, as a patient and psychologist, the fallout of living with a long term condition. It’s a personal account, but far from unique and certainly mirrored across other conditions. I’m hopeful it helps build understanding of the invisible side of long term ill-health.

The opportunity to be able to use this pretty horrid experience, in a professional capacity, and maybe (*fingers crossed*) have some impact is a luxury many people don’t have.  I hope this is the start of a much longer journey to support patients and those clinicians who clearly care enormously about their patients’ welfare.

You can read the piece online (pg 10) or view as a pdf. Thanks to Mr Stephen Black and Venous News for the invitation.

For more information about DVTs check out @ThrombosisUK

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“We’re more than REF people” – notes from the ARMA conference Impact SIG

Ok, so let’s just agree that my delay in writing up notes from the ARMA Impact SIG session again is an ‘endearing tradition’…….

Thanks to all of those who attended the SIG session at the annual conference in Liverpool this year.  Our impact community consistently showcases the collective experience, expertise and generosity which is driving impact and research management forward. It is always a pleasure to be part of those forums.

For those who weren’t able to join us, after a short presentation by Lizzie and myself on sector drivers, challenges and opportunities for impact, the assembled impactors (is this a word? *if not quickly coins*) discussed a range of issues for impact management in the current UK climate. Click here to read the full ARMA SIG 17 Discussion notes, but by way of summary:

  • In line with last year’s discussion, there is still a sense of poor recognition of the skills and expertise needed for impact. This continues to be compounded by eclectic job titles, job descriptions and role scope, alongside the common burden of being ‘stretched’ across the university to hunt down ‘nuggets‘ of impact gold.  There is an ongoing need to resource a stronger infrastructure within institutions to both ensure adequate provision is in place, and allow space and time for impact staff to develop.
  •  A common theme was the wish to drive home the message that impact managers are ‘not just REF people’.  Nor are they just nagging secretaries. Listening to SIG discussions, the professional resolve to ‘make research useful’ is continually and abundantly clear. That doesn’t mean the community’s eye isn’t on REF (how could it not be?), but that we are impassioned and committed to something more fundamental than a seven yearly assessment cycle. Perhaps our branding needs work……
  • The changeable research landscape presents challenges for establishing impact goalposts and engaging academics into the process. Whilst we now know more about REF2021, the fairly consistent picture painted about small, organisationally dispersed impact provision suggests that our institutions are not agile.  Given that we can’t just sit waiting for new rules, we must revisit our institutional set up and consider how to most effectively continue to operate and shift gear in response to sector changes.
  • Information management continues to be an issue, and whilst different universities are investing in different solutions, there remain issues for understanding what constitutes impact ‘data’, the skills needed to appraise impact related information and technical interoperability.  Activities to support this are ongoing, with a particular shout out to CASRAI (*holler*) for their work on harmonising impact information standards. Watch this space for updates….
  • Improving impact literacy and impact culture in organisations is, in effect, a product of doing all of the above (and more).  Our community is well aware of the achievements so far, but also work left to do to draw impact more securely into the academic process.
  • We should also connect multiple networks and embrace impact consultants. This is probably meant conceptually, but I for one am choosing to assume this means physically *awaits hugging opportunities*

As ever, our Impact SIG community represents the experiences and expertise at the heart of impact management.  Perhaps the increased weighting of impact from 20 to 25% for REF 2021 will galvanise the sector into more swift action to address the points above. The challenge and opportunity now is to harness this collective knowledge and connect ourselves and our networks to make it happen.

And consultants, sorry for the upcoming volume of hugs.

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