Opinion

More than a million of us are suffering with long Covid – yet still it’s not taken seriously

As we hurtle towards the end of the year, it’s always a time for reflection. Getting through the festive period will be a challenge: after a couple of hours of chatting with friends at dinner, I had to go and lie down to rest, to switch my body and brain off and allow them to recharge. It’s an improvement from last year, when I wouldn’t have got there to begin with, let alone managed a glass of fizz and engaged in conversation.

I caught Covid in March 2020, and was by definition a “mild” case: not admitted to hospital and no risk factors for severe disease, but how it has affected and my family is anything but mild. Having been fit and active, I now find that on bad days I still struggle with everyday chores, and my usually quick-firing brain remains in slo-mo (“brain fog”), a far cry from the way it used to function when I was still working as a consultant in infectious diseases. Days become a hierarchy of lists: on bad days I have to prioritise only that which is essential, and on good days I have to be careful not to overdo it. Pacing has become vital, and the joy of spontaneity has been vanquished. Everything has to be planned, to allow for time and rest between each activity, be it physical or mental. As I write this, I am aware I am not following that mantra, and there will probably be payback tomorrow.

For many months, it has felt as though long Covid has not been on the political agenda, but many people are still struggling with their everyday lives, and struggling to get the help they need. Why is long Covid not included in the daily statistics, or as one of the main incentives to avoid Omicron, and to get a vaccine and booster jab? It’s never mentioned, and it often feels as if sufferers don’t exist.

Long Covid did return to the news last week, with the publication of data from a multi-centre study suggesting that fewer than 30% of patients hospitalised with acute Covid had fully recovered a year later. It’s a stark statistic – yet this study did not account for the significant number of us who were never admitted to hospital, and have still not fully recovered. The most recent ONS data from October reports that 1.2 million people are living with long Covid (in hospitalised and non-hospitalised patients); 36% of those have had it for more than a year, with greatest prevalence in health and social care workers, and people living in more deprived areas.

Even if the new variant results in milder disease than previous ones, could more people still end up like me? And how will an already stretched NHS cope if there are new cases of long Covid after this current viral surge? There’s a lot we still don’t know about Omicron; a fuller picture will become evident over the coming weeks and months. Experience from previous variants suggests that vaccination gives some protection against symptoms, even if it doesn’t prevent infection altogether.

Long Covid is a complicated, multi-system disease, whose pathological processes have yet to be fully understoodmaking treatment difficult. This is further compounded by the diverse range of symptoms, so there is no “one size fits all” treatment. Health professionals have been extrapolating treatment strategies from other diseases, but management is not consistent between clinics. A current study aims to address this lack of standardisation by producing a “gold standard” for care, and Nice recently updated its guidance to include individualised treatment plans for those with long Covid.

Research into the disease received significant funding in the UK after it was officially recognised in October 2020, with £18.5m in February, at the same time the World Health Organization was emphasising the need for recognition, research and rehabilitation. A further £19.5m was awarded in July this year. It will be a while before we get conclusive data to guide management of the disease, but trials are under way.

We’ve come a long way since June 2020, when people with prolonged and unusual symptoms after Covid infection were being dismissed as neurotic. Increasingly vocal individuals and groups posted on social media and found that they weren’t alone in the symptoms that they were experiencing. Primary and secondary care physicians had to take notice, and, once long Covid was officially recognised as a disease, £10m was announced to fund dedicated clinics. This finally opened up care to those who had not been hospitalised.

There are now 60 clinics in England to be referred to, and 90 assessment services for triaging patients but availability of care remains a postcode lottery. Northern Ireland has only recently launched its first clinics, but Wales and Scotland still have none. However, even where there are clinics, waiting lists are long, and funding remains insufficient in many places. Additionally, a lack of dedicated physicians and physiotherapists presents a major problem. To improve access, in June this year NHS England announced a further £100m for the expansion of care for long Covid services, including 15 hubs for children and young people, but the lack of a consistent workforce is an ongoing problem.

With nowhere to turn to last May, and as a yoga teacher, I set up a group for others I knew who were similarly affected, focusing on exercises to help us improve our breathing. Finally, after a year of illness, I got the support of a physiotherapist, which has been essential for my improvement. I also joined a programme run by the English National Opera that focuses on breathing retraining via singing, where the camaraderie was as helpful as the singing itself. We’ve been on the same physical and emotional rollercoaster of long Covid, sharing health concerns, coping strategies, employment issues and rejoicing in our baby steps of improvements. We laugh, we cry and every fortnight we sing together. Our dream is to meet in person and sing on the stage of the Colosseum.

Long Covid isn’t going away soon. Post-viral syndromes are not new, but we have never seen anything on such a scale. I dread the thought of getting the Omicron variant. Who knows how my body would react this time? I first wrote about long Covid a year ago, and I could never have imagined that I would still be unable to work at this point. It seems so strange that, as a consultant in infectious diseases, I’ve had to sit out the entire pandemic from the sidelines, when I should have been playing a vital role.

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