On 21 July 2022, Baroness Hallett opened the long-awaited UK Covid inquiry by acknowledging that “the pandemic is still with us” and “people are still suffering”. Nevertheless, she promised that lessons would be learned “before another pandemic strikes” through the creation of a “factual, narrative account … [of what took place] across the UK”.
This somewhat bold announcement about pandemics and their respective timings was first revealed live to representatives of various public interest groups; myself included. We had been engaged in a consultation process some weeks beforehand, to finalise the scope of the inquiry.
The UK Covid inquiry
Throughout the pandemic Covid-19 has been measured in deaths, hospitalisations and rates of infection. The bereaved families of the 180,000 souls (at that time) whose deaths had ‘involved’ Covid were given their rightful place at the heart of this inquiry.
Those hospitalised were counted, while confined; but those infected who survived but did not fully recover, hospitalised or not, succumbed to a second pandemic that officially did not exist: long Covid. Our very first concern when this forthcoming inquiry was announced was where would this pandemic fit in the terms of reference?
So, various representatives of the millions in the UK still living with ongoing Covid symptoms (according to the Office for National Statistics) were also included, and our comments are a matter of public record.
Long Covid Support
I am a founding member of Long Covid Support, a patient-led peer support organisation established in 2020. We are now one of the largest international campaigning groups seeking rehab, research and recognition for this apparently new condition. We recently registered as a charity (in England and Wales).
As chair of their employment advocacy group for the last 18 months and founding member of offshoot specialist group ‘Long Covid Work’, I spoke to the wider impacts of Covid-19 on our UK workforce. The levels of chronic ill health and disability being caused by ongoing long Covid that our multidisciplinary group have observed are clearly impacting economic recovery whilst also ruining lives. We lobby for better occupational health and welfare support to address these issues at a macro level, ourselves and with other bodies, including the Trades Union Congress.
Long Covid and the government inquiry
Every group consulted had made its own enquiries, gathered evidence and reached conclusions during the pandemic; conclusions that we needed to know the official inquiry would include.
We could have been forgiven for wondering, at that juncture, what new learning would come from this government inquiry that we had not already surmised from our lived experience, privately, in the moment and recalled after the event in all its rawness, in our own safe spaces. But if the pandemic has taught us anything, it is that there is ‘a way to do things’ that must be followed; certain unwritten rules we have to figure out for ourselves.
I listened to every detail of the Baroness’s announcement for mention of key points we had raised, for encouragement that the inquiry would, in the end, produce something of value to our long Covid community.
Speaking up for those with long Covid
Those of us who became infected in the first wave of Covid-19 – pre-vaccinations, PPE, testing and tracing – had a unique insight into our pandemic preparedness, or otherwise.
We gave interview after interview to every radio and TV channel, podcast, newspaper and other publication to highlight our concerns that no provision had seemingly been made for those in our position. We connected and organised online and, perhaps naively, waited for help to arrive.
We were patient patients.
We stayed home. We saved the NHS. We waited.
To see ourselves mentioned in briefings. To know who to call; what help would be provided.
We sought support from other voices questioning aspects of the official narrative: Independent Sage, the all-party parliamentary group on Coronavirus led by MP Layla Moran. We used connections to encourage effective patient and public involvement to help shape research that would hold the key to understanding and one day treating our symptoms and various chronic conditions. The National Institute for Health and Care Research recognised us as ‘experts by lived experience’.
Influencing the narrative
However, it was nigh on impossible to influence the prevailing narrative. Our biggest weakness, I believe, is that we are many and scattered and we hold no official power to influence an establishment that effectively ignores us: because they can.
The launch of Byline Times and then the Bylines network became a welcome new platform from which to challenge the false assumptions, limiting beliefs and convenient excuses that bar any progress. Those we need to lead us out of this pandemic appear too often to have been too busy plotting their own political next steps, for them to flourish while many others flounder.
For this reason, I am delighted to be joining the new Bylines Scotland team to help shape a narrative that reflects our lived experience, written from our hearts without hidden agendas, manifestos and egos.
If we are to get to the truth, then we need to understand that you can’t solve a problem with the same level of thinking that created it.
Thinking that didn’t question how seamlessly we moved from measuring infections initially by an ‘R’ number (of how many others were infected by each case) to progress without too much concern to estimating percentages of our population infected at any given point, after all mandatory protections had been removed. This reached an alarming ratio of 1 in 16 people living in Scotland estimated to be infected only a month or so ago, still didn’t question the widespread acceptance that we can realistically continue to ‘live with Covid’ on this trajectory.
The R, or reproduction, number is the average number of secondary infections produced by a single infected person. An R value of 1 means that on average every person who is infected will infect 1 other person, meaning the total number of infections is stable. If R is 2, on average, each infected person infects 2 more people, and so on.
The pandemic is far from over
The pandemic has affected every one of us and it is not over yet: far from it. The process of collective sense-making is important though largely absent to date. Could much of the chaos of the pandemic be merely a symptom of underlying dysfunction in how we organise and see ourselves as a society?
In future articles, I intend to explore more about what living with Covid really means, the impacts on individuals, families, jobs and the economy. I aim to find out how we make sure that in Scotland we do the best we can to find a secure foothold that will allow us to build back better in a way that is sustainable, addresses increased inequalities and makes us proud of what we come together to achieve as a nation.
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