“The report by Chronic Illness Inclusion and Leeds University Business School sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).”
For those of you wondering what ELCIs are, see this explainer. Some of you may also be interested in the Chronic Inclusion Project here – especially councillors, potential and elected, because chances are you have constituents in this situation who are not me. The diagram below is from the full report…and illustrates me on a bad day. The exertion might also involve daily essential food shopping, or taking part in a Zoom call.
On a bad day, the prospect of venturing out of my neighbourhood even to the town centre is a non-starter. Even on a good day, the prospect of venturing out of Cambridge on public transport say for a day trip to London is, at the moment out of the question. Which has had an inevitable knock on impact on social relationships.
From their launch event online, I found this presentation by Stef Benstead (who graduated from Cambridge, but who later had to pull out of a PhD due to chronic illness) to be particularly interesting.
Above – start at 19m50s.
Hard to recall a time when I didn’t struggle with tiredness.
I recall being told by several adults at the time (mid-late 1990s in my teens) that it was hormones and I’d grow out of it. What I didn’t clock at the time was that this was having a devastating impact on my mental health and that there might have been some limited help available had I known about it. I still kick myself for not spotting Centre 33 earlier than I did. Had I started going there in 1995 for counselling (mid teens) rather than in 2002 (early 20s when I started my post-graduate diploma at Anglia Ruskin in post-war European History), my life could have taken a different direction. Or rather, as I’ve often told myself, I could have enjoyed life more than I did.
This year is coming up to my tenth year since I had an anxiety-based mental health crisis which left me burnt out and unable to work or function full time. Ever since then I’ve been living back with my parents having previously lived and worked independently of them in both Cambridge and London, as well as being at university in Brighton as an undergraduate. Being in such a situation means you inevitably dwell on past events, incidents, and mistakes – in particular choices that today you’d make differently. Such as choice of GCSE/A-level subjects, outside hobbies/activities, choice of universities or subjects.
Staying away from DWP
I’ve been fortunate enough over the past decade with family support and an inheritance from my late grandparents to have led a largely independent existence – independent from the state welfare payments that is. On the latter, I’ve made it last for over four years in support of my local historical research, so can’t complain.
Such were the horror stories coming out of DWP that I also put off applying for support that perhaps I might have been entitled to. I’m not the only one. This is a wider public policy issue with knock on impacts. Whether it’s people missing out on improved standards of living that may also benefit their health, through to being able to contribute positively to community life, through to increased spending power meaning more local businesses are supported. (People on low incomes have a much higher propensity to spend vs the very wealthy, therefore in times of low economic demand, it makes more sense to support those on low incomes than giving more tax cuts for the rich).
The experience of a suspected heart attack in my late 30s and a Christmas at Addenbrooke’s was if I can call it that one of those ‘personality-changing life experiences’. For those of you that might have known me in the years before, I can’t see myself ever being that same person again – though nor would I want to be. I’m the wrong side of forty! (Depending on your perspective).
In those last few years, I made the conscious decision to invest my functional time (when not bed-bound recharging internal batteries) and inheritance in a local history project called Lost Cambridge. It started off looking at buildings past, present, and unbuilt and trying to find out the stories of why we ended up with the city that we have. It was only through that research that I got led down a path that uncovered (from my perspective) the women that made modern Cambridge. I’m not going claim that I was the first to uncover it – I wasn’t. Marie Thompson and Tamsin Wimhurst got there long before I did.
But they got there before social media and big data analysis in online archival research became mainstream. So neither of them had the sort of access and abilities I have with technology in being able to scan millions of pages of newspaper pages in a matter of seconds using keyword searches. Important when it comes to chronic energy-sapping illnesses because it means that I can undertake research without having to leave the house. One of the problems with ELCIs is that you can end up using all your daily ‘capacity’ getting to/from venues leaving nothing left over to function at the event. Anyone who has ever given me a lift to meetings – esp with film kit will know that the reason why I ask isn’t because I’m too lazy to go via public transport or cycle, it’s that I won’t have the capacity to do the videoing if I have to get there under my own steam – and will then spend the next 48 hours recharging before I’m functional again.
Above – the dark rings around my eyes from chronic fatigue.
Trying to undertake solitary research with a chronic illness.
Local history, women’s history/herstory, social history – they are all under-resourced and under-reported when compared with military history, political history, the Victorians and the Tudors.
We don’t have a buzzing research institute for local history that is a hive of activity full of energised, creative, dynamic historians ready to burst out onto an unsuspecting public with exciting stories of the great achievements of heroes past. The best I could do was to try and remind people that local history is an election issue for the county council elections in this blogpost, noting a public question I asked county councillors on the subject only to be told that the archive service was being run ‘at its statutory minimum’.
I chose to invest some of my inheritance in items that I’ve gifted to local museums – in particular ones that I hope will catch the public’s eye, such as this antique railway poster by Kerry Lee from the 1950s, now at the Museum of Cambridge.
An original from the time, this image for me is simply in a different league to all of the other tourist posters and Cambridge-themed large artworks that I’ve come across in my research. When I’ve seen people’s reactions to it, it’s demonstrated to me that as a museum piece it has that *Wow!* factor.
Furthermore I’ve commissioned local young creatives to test concepts on bringing local history into the fields of music, art, and public engagement to as to demonstrate proofs of concept to potential funding organisations – tasks I could not have carried out alone.
But I’ve not been able to take it any further than what I’ve produced on social media and at public talks because I don’t have the support networks there to scale up. I’ve had invitations to apply for Ph.Ds, jobs in my public policy field from my civil service days, and even to stand for election for political parties (I won’t name them). But the state of my longterm health means I’ve never been able to take up any of those offers. It’s hard to find the words to express just how utterly soul-destroying that feels. Because what it’s also done is it’s limited my ability to form friendships and relationships because I’m not able to be out and about day-to-day and furthermore don’t have a close-knit team in a dynamic organisation to be an integral part of.
“What’s worse is I’m not the only one in this situation – and Long Covid means that hundreds of thousands more people are now face a similar outlook unless ministers change their policies”
I’ve reached the stage now where I have to apply for what little support might be available because amongst other things my condition has worsened during the pandemic. Again I’m not the only one to face worsening health as a result. What’s appalling is how unwilling and unable ministers have been to recognise this and put in place adequate policy responses. It’s even more harder to take now that we’ve all seen both in the banking crisis and now with the pandemic that if ministers feel they need to turn on the money taps in a very big emergency, they can and will. But why did £37billion go on a failed Test and Trace, and dodgy contracts to people with political contacts and not to resource-starved public services? And why haven’t MPs now revoked/repealed the emergency legislation under which such emergency procurement was made?
Asking for a proper diagnosis
It’s something I’ve asked my GPs to do repeatedly, but such is the mess that Andrew Lansley and Jeremy Hunt made of healthcare reforms that it’s only been in the past year that I’ve had the same GP for more than two appointments in a row, after my previous longterm GP retired after 35 years as a GP. With locum-after-locum it was nigh-on impossible to get the essential referrals – and then the heart attack complicated everything again.
Above – does that sound familiar? Below: Why planning ahead is difficult.
“Many disabled people with ELCI have little or no capacity for paid work, and many others can only bring in earnings from part-time work. A robust social security system is, therefore, crucial to compensate for long-term unemployment, or to supplement low earnings.”“I already have a job… getting through the day” © Catherine Hale, Stef Benstead,
Dr Kate Hardy & Dr Jo Ingold, p42.
Stef Benstead explains in her speech in the video on how the Working Capability Assessments (WCA) & Personal Independent Payment assessments (PIP) are flawed when it comes to assessing ELCI.
“There was a lack of consideration of the cumulative impact of activity; the suffering experienced during or for some time after activity (‘payback’); the added time taken up by resting; and the unreliability of being able to perform an activity when required to.”Ibid, p44.
This is (in my case) Post-Exertional Malaise. For years I didn’t have the vocabulary to describe it. In the mid-2010s when I was doing social media & public policy workshops, one day down in London resulted in having to spend one day recharging. Two days down in London meant three days recharging.
Above – very few people knew about this at the time, but this had a *huge* impact in my participation in concerts with We Are Sound pre-lockdown.
Above – see if you can spot me 0m25s in, at Tatersalls in Newmarket.
One of the things that binds us together as musical units is are the extended rehearsals at weekends and in the run-up to concerts. Yet an evening event requires all day preparing. Inevitably I have had to miss the build up at the more recent concerts if not pull out altogether because I simply did not have anything left in me. Hence trying to use the Spoon Theory analogy to explain what I was trying to cope with.
Today, it can be a single extended Zoom conference, such has been the impact of lockdown on my mental health. Being in a household with family members extremely vulnerable to CV19, and also having been listed as at a raised risk myself (hence already having had my first dose of the CV19 vaccine), my entire social life has been shut down completely since the outbreak of the pandemic. It will have been even worse for others. Hence the metaphor, we’re all in the same storm, just on different boats. But being on any boat in a storm is not fun.
From a policy perspective, Ms Benstead cites the academic paper behind the current policy and culture as being one dating from 2005 – The Scientific and Conceptual Basis of Incapacity Benefits. In 2016 that work was criticised and does not represent evidence-based policy, reported Disability News Service. The paper was titled Blaming the victim, all over again: Waddell and Aylward’s biopsychosocial (BPS) model of disability, published in the Critical Social Policy Journal.
This in part explains why I’ve not gone for state support earlier – what’s the point going through all of that only to have sand kicked in your face by an assessor using a flawed set of criteria to assess you with?
The problem ministers now have is that so many more people are now having to go through this flawed system suffering from Long Covid – more than a few of whom might have avoided it had ministers demonstrated some basic competency in managing the pandemic earlier on, and not been so irresponsible in the run up to Christmas 2020. The problem is that with such a large parliamentary majority, there’s little incentive for ministers to do much in the short term. And if results in the local elections go their way, they will take that as a sign that they are doing what voters want them to do, in the face of a fragmented and divided opposition unable to unite against a head of government who seems to have very little to restrain him on public policy.
Awaiting more test results and an assessment from my GP.
So this is where I am now – having just got a message that I’ll need to do some more follow-up tests in a month’s time. In the meantime, I’m not expecting news and reports in the media of chronic fatigue to to away. Quite the opposite. And perhaps about time too.
In the meantime…
****It’s voting day tomorrow!!!!****
And Democracy Club have done a Wordle on what the candidates across the country are talking about.
So remember to vote! Bring a mask & bring a pencil to the polling station. Still undecided on who to vote for? Have a last minute look at your candidates via https://whocanivotefor.co.uk/
I’ll be back in a few days with a round up of results in Cambridge & Cambridgeshire.
If you are interested in the longer term future of Cambridge, and on what happens at the local democracy meetings where decisions are made, feel free to: