Having worked across a broad range of pharmaceutical, charity and digital health campaigns over the past 20 years, we always strive to put the patient at the heart of our communications. Yet nine months into this pandemic, there remains a vast disconnect between patient experiences, national guidelines, understanding and support for long-COVID patients across the UK.  

High temperature. A new, continuous cough. A loss of or change in taste or sense of smell. 

We all know these now-familiar COVID-19 symptoms to look out for. But there is increasing evidence that many people struck by the virus don’t experience any of these and are barely unwell. Yet others are suffering a vast array of debilitating symptoms not officially recognised as being caused by this still relatively unknown virus.

These “symptoms” weren’t what I experienced either when, in March, gastrointestinal problems struck me down, along with a low temperature, limb and facial numbness, dizziness, muscle spasms and jolting, vision problems, and fatigue. It was so bad I remember telling my GP (over the phone): “My whole body feels like it’s under attack – every bodily function feels like it’s being tested.” Then followed months of neurological tingling, muscle weakness and joint pain.

Round two in September saw the return of the reduced temperature and red-eye, the onslaught of intense headaches, neck rash, fatigue, leg pains, and swollen glands. At least this time, I could be tested to confirm the diagnosis. On day 10, I was encouraged by 111 to go to A&E for suspected blood clots. 

Little is known about the long-term impacts of the virus. Many people are struggling with what has been dubbed “long-COVID”, where they are still suffering terrifying and debilitating symptoms from their brush with the virus – most commonly fatigue, respiratory problems, cardiovascular issues, and joint and chest pain, as well as ocular disturbance, neurological pain, liver function disturbance, and cognitive impairment. 

In August, preliminary results of the North Bristol NHS Trust’s Discover project, which is studying the longer-term effects of coronavirus, found nearly three-quarters of coronavirus patients admitted to hospital were suffering ongoing symptoms three months later. Many were unable to carry out everyday tasks, including washing, dressing, or going back to work. But these chronic problems are not restricted to the patients hospitalised with COVID-19. Recently, Tim Spector, a professor of genetic epidemiology at King’s College London who runs the app-based COVID symptom study, said up to 60,000 people in the UK have been suffering from long-COVID for more than three months and around 300,000 people have reported symptoms lasting for more than a month. 

The Long COVID Support Group has over 23,500 members on Facebook alone. Many are six months into their ‘corona-coaster’, and few have received much in the way of follow-up support or diagnostics for their debilitating symptoms. Fear and uncertainty are rife as family, professional and student lives are in a state of paralysis.

Despite my body not yet feeling my own, I believe I’m one of the lucky ones. Many with “long-COVID” are unable to work at all and even care for their children. Children are suffering with long-COVID too. Some long-haulers are even admitting they are mentally struggling to go on, with no end in sight to the misery this terrible virus has inflicted and with nowhere to turn for help or answers.

The COVID-19 Research Involvement Group was set up on Facebook to connect patients to researchers, and patients are desperate to be involved. In the absence of local healthcare support, researchers are plugging the gaps for many patients needing someone to show interest in their chronic and continually evolving health needs. 

There are glimmers of hope and best practice. Asthma UK and the British Lung Foundation were quick to act. The Post COVID Hub for all patients experiencing breathing difficulties following COVID-19 connects patients to respiratory specialists by WhatsApp and phone – providing access to specialists in a time-efficient and easily accessible way. However, we cannot leave this support to the charity sector with many charities struggling to survive as a result of the pandemic and having to make critical decisions on their resources. 

Patients are writing the textbooks on COVID-19, yet few have been heard. There is an enormous amount that we can learn through social listening and patient engagement, and we must ask ourselves, are we doing enough to provide the long-term support they need? 

More than ever, we need pharma with expertise in respiratory, cardiology, neurology, rheumatology, nutrition, fertility, mental health, and neuropathic pain to harness its patient-centric values to accelerate access to clinician insights on managing the symptoms of long-COVID.

This crisis has accelerated tremendous innovation in the adoption of new technologies, research, and scientific collaboration. But we need to rewrite the rules on engagement and communication to be mindful of the challenges long-COVID patients face. Reams of written information, cumbersome questionnaires and hours of advisory boards will not fly with patients who are struggling with visual disturbance, cognitive issues, and extreme fatigue. We must act with agility, speed, and efficiency to get the most out of these patient interactions and deliver patient support programmes that are directly accessible to an ever-increasing patient group. 

It is time to start a different dialogue on patient engagement and support. Are you ready to listen and engage? Let’s work together to be the catalysts for change. Let’s amplify patient voices and devise medical education programmes to accelerate understanding.