Patients create Long COVID advice videos to help others

Long COVID patients have helped design a series of 10 short videos to support fellow patients with their recovery.

The animations are called the ‘COVID Recovery Puzzle’ to reflect how recuperation can feel like putting the pieces of life back together again. Videos can be watched in any order with the four ‘corners’ of the puzzle being most crucial to wellbeing – boosting your sleep, relaxed breathing, food for recovery and energy recharge.

Top tips include planning rest periods before you feel tired and using a traffic light system to assess symptoms ahead of carrying out an activity. Each film finishes with three key things to remember.

The videos, which are available on the Guy’s and St Thomas’ website, have been created by participants in the South East London Long COVID programme and clinicians. They hope to increase understanding of the condition and open up conversations with family, friends and employers. The videos will also be available in Spanish and Portuguese in the coming weeks.

Mum-of-two Stephanie Schreiber joined the Long COVID programme about 18 months ago. She caught COVID in March 2020 and it took nearly a year before her condition stabilised and she started to see improvements.  She had difficulty returning to everyday activity and suffered multiple symptoms including fatigue, chest pain and Postural Orthostatic Tachycardia Syndrome (POTs), a condition which includes increased heart rate and difficulty sitting and standing.

Stephanie, 48, says she wanted to get involved in designing the videos to share what has helped her to recover and to give something back. 

She said: “We have thought carefully about how to simply present complex concepts to make it really easy for people who are struggling – just as we were. We were keen to ensure that the videos are bite size and easy to understand.

“I hope that we have made Long COVID a lot less frightening and showed that recovery is possible as there are a lot of myths and some negativity online when you are looking for support. If the videos had been there for me, I might not have pushed myself so hard and tried to return to my everyday household chores, work, and exercise too quickly.”

Stephanie, who lives in Bromley, still suffers from Long COVID symptoms and says her recovery is about 75 per cent of where she would like it to be. She lost her job in employee wellbeing due to her illness but has enrolled to retrain as a health coach. 

Stephanie said: “The most difficult thing at my worst was not being able to have proper interactions with my children and family because my energy levels were so low.

“The Long COVID programme has been really life changing. Being part of a group that comes together regularly to talk about how we are doing and laugh and cry, and see the progress we have made, has been hugely inspiring.

“I’m really hopeful that these videos will open a dialogue between family members because sometimes people don’t know how to talk about this issue and get the help that they need. These videos can also be a wake-up call for employers to starting thinking about how they can best support colleagues with Long COVID to recover and stay in employment wherever possible.”

George Apunte, 42, admits that he felt tearful when he saw the final versions of the videos.

He said: “If I had even known half of it at the start, I wouldn’t have got as bad as I did. I wanted to help create these videos to help others and ensure that they don’t struggle the way that some of us did.

“One of the hardest things was having a baby who wanted me to pick him up but I just didn’t have the strength so often I just pushed through the pain barrier.”

George, who has two children aged six and three and is a carer to his wife who has a chronic illness, caught COVID for the third time in April 2022. He tried to return to his job working on the gateline for a railway company once the isolation period finished but this made his ongoing symptoms a lot worse. He ended up being signed off work for almost a year. He suffered with bad dizziness even when asleep, crushing fatigue and difficulty walking.

George began working again at the end of March 2023, doing two hours, two days a week. His working pattern has gradually increased and he hopes to return to full time hours this month.

George, who lives in Lambeth, said: “The Long COVID programme has helped me realise that I am not alone in this struggle. It has been good to be around people that actually understand and know what you are talking about. It has helped me come to terms with the fact that I have an illness – just to be able to say that out loud was really liberating. It meant I could tell friends and family that this is what it was, but still 9 out of 10 people don’t really understand. I hope the animations will help with this.

“It is a step by step process, but I feel so grateful to be achieving things again.”

The South East London Long COVID Programme is a two-year programme funded by NHS Charities Together and Guy’s & St Thomas’ Charity. It covers all five NHS Trusts in south east London and their hospital charities, with the aim of accelerating the recovery of people with Long COVID across the six boroughs of south east London.

Julie Moore, lead physiotherapist for the South East London Long COVID Programme, said: “Our patients were really keen to create these videos to help others, and we are very grateful that so many people collaborated on them. Their first-hand experience has shaped every stage of production, from which topics are covered to the look and feel of the films.”

Jacky Jones, co-director of the South East London Long COVID Programme, said: “Our Long COVID programme has helped hundreds of patients across south east London, and these videos have the potential to support thousands more across the country. We are very grateful to our funders and the ongoing research into this field which is making our work possible.”  

Prof Nick Hart, co-director of the South East London Long COVID Programme, said: “We sincerely hope these videos will make a difference by supporting people to manage their symptoms.” 

To watch the COVID Recovery Puzzle videos, visit Coronavirus (COVID-19) recovery - Overview | Guy's and St Thomas' NHS Foundation Trust (guysandstthomas.nhs.uk). 

For more information about the South East London Long COVID Programme, click here.