First personalised support trial to revamp long Covid care + London case study

Researchers at St Georges, University of London are calling people to join the first support trial of its kind which will provide personalised care to people living with long Covid.

Long Covid continues to have a devastating impact on people’s lives, affecting an estimated two million people in the UK alone [1], including front-line healthcare professionals who cared for the public during the Covid-19 pandemic.

Recent research has confirmed what many people with long Covid have been saying – that the condition is fluctuating and unpredictable in nature. It is associated with a myriad of symptoms from cognitive difficulties to extreme fatigue, from shortness of breath to dizziness.

People with the condition don’t fall into one box and so a complete rethink in how long Covid is managed on an individual basis is vital.

To compound that, not everyone in the UK has access to the same level of support. Some people will be referred to long Covid clinics, group sessions, one-to-ones and/or rehabilitation in their local area, whereas others may not have access to any services.

Now, the researchers leading the LISTEN trial hope that the study will be a major step forward in providing much needed personalised support to people with long Covid and to push for a change in NHS guidelines so everyone in the UK has access to effective care.

Professor Fiona Jones, Co-chief investigator of the LISTEN trial at St George’s, University of London said:

“People living with long Covid don’t recover in the same way we’d expect compared to most infectious diseases. This gap in understanding has led to a tsunami of complications. The majority of those battling the often-debilitating condition don’t feel supported or believed by healthcare professionals, with some misdiagnosed with depression or other conditions, feeling isolated and a loss of identity, all whilst facing an unpredictable recovery.

“We want people living with long Covid to feel heard and supported, and so we’ve drawn on lived experiences to tailor this trial. We hope the results will drive the NHS to change the way long Covid is treated and cared for.”

Professor Monica Busse, Co-chief investigator of the LISTEN trial at Cardiff University said: “Finding effective treatments for such people living with complex and variable conditions such as long Covid is challenging. Even when new treatments do emerge, they may not target each of the many long Covid symptoms. The real value in the LISTEN intervention is its focus on the stories and learning of those who have navigated their own pathway to recovery in the absence of established cures”.

The LISTEN trial will recruit over 500 people living with long Covid across the UK, thanks to funding from the National Institute for Health Research (NIHR) and in collaboration with Cardiff and Kingston University. It will evaluate the effectiveness of a new personalised programme which aims to support people living with long Covid to manage their every day.

Upon joining the trial, people with long Covid will randomly be assigned to receive usual NHS care [2] or receive support provided by the LISTEN intervention [3]. People in the intervention group will receive up to six remote one-to-one sessions with one of the 50 LISTEN trained practitioners, as well as a LISTEN handbook.

This unique trial was co-designed by 30 people living with long Covid who shared their lived experiences, what has worked for them in their path to recovery, their priorities and ideas. They worked with researchers to shape the training for the LISTEN practitioners who will conduct the one-to-one sessions, and to design the trial handbook which offers personal stories, advice and highlights the strategies that have helped them to manage the condition.

The trial is open to people aged 18+ years of age who were not hospitalised with Covid-19, who have consulted their GP, and who have been experiencing symptoms for longer than 12 weeks. Common symptoms can include, but are not limited to, fatigue, shortness of breath, and cognitive difficulties.

People living with long Covid can sign-up to the LISTEN trial by visiting www.listentrial.co.uk.

Case study story

Ian Patel, 58, from Stoke Newington in North London caught Covid in April 2020. Since retiring as a newspaper editor, Ian enjoyed a busy life cooking, keeping fit, travelling, and playing an active role in his community volunteering in a kitchen feeding the homeless. But long Covid meant he couldn’t even walk the length of the front room without ending up on the floor and had moments when he couldn’t even remember his wife’s name.

Ian said: “I first realised I caught Covid when I was unable to taste chilli in my cooking. I lost my sense of taste and smell but didn’t feel too ill. I thought I had got off lightly, which was a huge relief as I was already on immunosuppressants for an underlying condition.”

Ian was very active. He would get up early to do a two-hour dog walk before 9am, he’d lift weights at home for a couple of hours and keep busy around the house.

But in June 2020, Ian started to develop extreme cognitive issues, fatigue, and breathlessness.

“There were days on end when I could barely form a sentence. I would say a few words and lose track of what I was saying. I would sit and stare at my wife for 10 minutes and I couldn’t even remember her name. There was one time I remember lying on the floor in the front room fighting for breath – I was staring at the television but couldn’t remember the word television. In that moment I thought this is the end – I couldn’t breathe and felt like my brain had stopped working.”

More than two years later, Ian’s fatigue and cognitive issues still dominate his life.

“Everything we do is planned around my fatigue. I get up early to get things done, but my day is often finished by 11am. I get into bed every afternoon now – some days I sleep and some days I just lie there. I can’t walk the dog as much as I used to, and I can no longer cook lots of dishes as I can’t pay attention for long enough and I just get too fatigued.”

“I had a big, fulfilling life before long Covid, but life has got very small and diminished now. My wife and I used to make the most of the arts and culture in London but I don’t have the energy to go to exhibitions and the theatre anymore. I haven’t even read a book or watched a film in three years because I can’t concentrate for that long. There are lists all over the house and my diary is full of the most ridiculous things to remember because I can’t even hold a list of three things in my head.

“I feel that I am one of the lucky ones though. Although it has completely destroyed my life, and I’m fairly sure will continue to, if this had come 20-30 years ago it would have been a calamity. I’ve had a successful career, I’ve been in a stable marriage for 32 years and our kids are now adults living in their own homes. The added personal damage must be huge for those getting long Covid at a younger age, just as they are starting a career and a family.”

Ian supported the co-design of the LISTEN trial as a way of helping others deal with long Covid.

Ian said: “I was lucky I got taken seriously by my GP, but a lot of people don’t have that same experience. They don’t feel believed and often feel fobbed off. They’re being told that this is all a mental health condition, which isn’t good enough.

“The LISTEN trial will be powerful for anyone struggling with long Covid. There’s hard won and lived experiences embedded in the design – with nothing to lose and only things to gain from joining the trial.”