“We have been totally abandoned” people left struggling for weeks as they recover from COVID at home

Initial survey findings show the long road to recovery for people who have faced COVID at home without going into hospital

New survey findings show that people recovering from mild-moderate COVID are struggling for weeks with symptoms, raising concerns that there is not adequate support for people who have not been in hospital with the illness.

The ongoing survey is being run by Asthma UK and the British Lung Foundation, through their post-COVID HUB, which they set up, alongside a helpline and WhatsApp service, to support anyone left with breathing difficulties after COVID.

The survey has so far been filled in by almost 1,000 people, of which over 800 had not been in hospital with COVID. The 2 charities are urging more people to complete the survey to help grow the understanding of post-COVID and its impact across the full range of communities particularly exploring how gender, ethnicity, age and socio-economic factors affect health outcomes.

Asthma UK and the British Lung Foundation are also calling on the government and NHS to advise what they are doing to identify and support people with post-COVID respiratory complications who were not admitted to hospital for COVID-19. The charities have written to England’s Chief Medical Officer, Professor Chris Whitty, with their concerns.

The initial findings from the survey show many people who had mild – moderate COVID are now on a long road to recovery, affecting both their physical and mental health.

Of those surveyed who have not been in hospital:

· When asked what symptoms most affect them, the top five were: breathing problems (90%), extreme tiredness (64%), sleep problems (22%), cough (22%) and changes in mood, or anxiety or depression (22%). The majority of people had not experienced these symptoms before having COVID.

· Of those, 83% are struggling with breathing problems, 85% from extreme fatigue and 75% with sleep problems for over 4 weeks.

· These symptoms are affecting people’s day to day lives, with three quarters of people most affected by breathing problems saying the symptoms often interfere with daily activities

Post-COVID is also taking its toll on people’s mental health. Over half of people surveyed say they do not feel they can cope well post-COVID. With some people even suffering from symptoms of post-traumatic stress disorder.

The post-COVID HUB has heard from many people who feel abandoned, frustrated, and confused as they do not know where to turn for support.

Tracey, 36 from Twickenham, is still recovering three months after first developing COVID symptoms. “I started to feel rundown and then started feeling a massive pain in my ribs,

making it hard to breathe. My symptoms then escalated quickly, and I was poorly in bed for 6 weeks. I’m still feeling the effects now, it feels like I take one step forward and two steps back. Even small things like hoovering can trigger my symptoms. I think this needs to be talked about more – there isn’t much out there to support people like me who haven’t been hospitalised but are suffering from long-term symptoms. I never expected it would affect me like this, and it’s a huge emotional stress, not knowing what will happen or when I will feel better.”

Andy, 48 from Sheffield, was suffering with symptoms for over a month. “I was really struggling with day to day activities, even going up the stairs was hard work. I was suffering particularly from a cough, aches and pains and breathlessness. I was diagnosed with asthma in 2006 but it’s always been really mild and has never got in the way of my day-to-day life. Now, I’m much more aware of my condition and have improved my asthma management. But it’s so hard for me to know what is being triggered by asthma and what is being triggered by post-COVID – there needs to be more information out there to help people recovering. It can feel really isolating.”

Pam Parry, nurse on the post-COVID HUB helpline, said: “I’ve spoken to many people in their 30s-50s, who were very fit and healthy, and have now been left really struggling. Many debilitated by breathlessness, chest pains and fatigue, with the majority feeling the effects 8-12 weeks after COVID. Lots of people are very distressed. People recovering from mild-moderate cases of COVID must not be overlooked. We need to ensure they can access support and advice to help them, on what for many, could be weeks or months till they feel back to normal.”

Alison Cook, director of external affairs at Asthma UK and the British Lung Foundation, said: “We’re learning more about COVID and post-COVID every day, and this gives us just a snapshot of emerging post-COVID effects. Which is why we need your help. I’d urge anyone who has been affected by post-COVID symptoms to fill in our survey, so we can ensure people recovering have the best care and support possible and that we can reach every community.

“It’s also vital that the government and NHS identify and support those suffering from post-COVID respiratory complications, or else risk a huge unmet need. We know the impact respiratory symptoms, such as breathlessness, can have on someone’s day to day life – and the right support can make all the difference. Post-COVID is unchartered territory for everyone – we must work together to tackle it and ensure no-one is left behind.”


Notes to editor:

Visit the Post-COVID HUB on: post-covid.org.uk. Researchers, health care professionals and people affected by post-COVID-19 lung health issues can sign up to email newsletters.

Call the Post-COVID HUB helpline on: 0300 222 5942

For more information or for interview requests, please contact the press team on 020 7786 4949 or email press@blf.org.uk.

Anonymous free text responses from the survey, when asked - Is there anything else that would be useful for you?

· More widespread information regarding recovery of those falling into the “mild” cases which does not feel to be a mild situation by any means.

· For the people in the middle like myself to be heard.

· Acknowledgement that even mild COVID can have a long-lasting impact on health.

· Honesty about this situation and being taken seriously is so important.

· [It would be useful] to not be told it is anxiety and made to feel like it’s not real.

· I feel hopeless and depressed and not sure if I can ever recover. It would be [useful] to have some sort of care for people who never been admitted to hospital and told to manage at home as I feel we have totally been abandoned.

About Asthma UK and the British Lung Foundation:

Asthma UK and the British Lung Foundation merged on the 1 January 2020.

Asthma UK’s mission is to stop asthma attacks and cure asthma. We do this by funding world leading research, campaigning for improved care and supporting people to reduce their risk of a potentially life-threatening asthma attack. We are entirely funded by voluntary donations. For further information, please visit: www.asthma.org.uk.

The British Lung Foundation is the only UK charity fighting to help the 1 in 5 people in the UK affected by lung disease. The charity provides support and information to improve the everyday lives of people with lung disease. We are also campaigning for better diagnosis, treatment and prevention for now and the future. For further information, please visit www.blf.org.uk