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Four things we learnt about coronavirus from people like you

Andrew works as an analyst in our policy team. He recently organised a survey to find out how coronavirus is affecting people with lung conditions. Here’s what we learnt. 

We know that if you live with a lung condition, coronavirus has had a particularly severe impact on your life. And so far, we’ve been here to help through our Asthma UK and BLF helplines, and our frequently updated online health advice

But we know it’s also important to keep listening, so we asked you to help us understand how people with lung conditions are coping, and how your care is being affected.  

The results of the survey told us that most people living with lung conditions prepared well for the lockdown, and if you live with a lung condition, you’re highly likely to have taken the management of your health very seriously. But our survey results also told us there are a few hidden impacts of the coronavirus and lockdown. Here are 4 things we learnt.  

People are feeling anxious (obviously) 

When we asked people to rate their anxiety levels on a scale of 1-10, over two thirds of people said they were at 8, 9 or 10 on the scale. If you’re finding the current situation tough, know that you’re not alone. We know that it’s hard, especially if you have to shield from loved ones. And if you need a hand, we have advice on how to look after your mental health if you live with a lung condition

Shielding letters save lives 

People with severe lung conditions, including anyone with cystic fibrosis, interstitial lung disease (including IPF), those with severe COPD and some with severe asthma have been advised to shield by the government.  

The good news is that in our survey, we found that 98% of those who received a letter advising them to shield are following this guidance. The bad news is that there have been some concerning delays in people getting their letter or text telling them to shield. 

Over half (51.8%) of you told us you were shielding even without receiving your letter or text at the time of the survey in early April. Everyone who should receive a shielding letter should have received it by now – if you are still unsure, please get in touch with your GP or hospital specialist. 

Routine care shouldn’t just stop 

The NHS is under massive strain from coronavirus. You’ve probably heard that health care professionals have had to cancel routine care or make appointments online or over the phone.  

Regular care for people with respiratory conditions, such as annual asthma reviews and pulmonary rehabilitation have often been cancelled.  

Nearly 31% of you told us you’d already had a GP appointment conducted remotely. But almost 10% said that care for their lung condition in primary care had been cancelled. That seems to match recent guidance that tells GPs not to continue with routine care.  

If you have your lung condition managed at the hospital, you’ll have also been impacted. We know that routine appointments – things like reviews and support for self-management – are really important in keeping people healthy and out of hospital.  

If care for people with long-term lung conditions is disrupted for a long time, the results could be disastrous. And the NHS will be hit harder this coming winter. We’re asking GPs to prioritise digital asthma and lung disease reviews now, to prevent problems in the future. 

Our data is a snapshot in time from the start of the lockdown. For all we know, these trends could have worsened, and that could have a terrible long-term impact on the health of people with lung conditions.  

Technology might help people with lung conditions stay in contact with their health care professionals and provide some aspects of routine care. However, it’s vital to remember that if you live with a lung condition, you should still access emergency care if you need it. 

Not everyone with a lung condition is taken seriously by their employer 

Most people – just over 64% – said that their workplace had been ‘very supportive’ or ‘supportive’ during coronavirus. That’s encouraging. However, the picture is different for those who can work from home compared to those who can’t. 

For those who can’t work from home, the proportion of people feeling supported dropped to 51.5%. That’s a big difference with people who can work from home - 81% of that group said they were supported.  

The group unable to work from home will include key workers, whose efforts during the lockdown period have been remarkable. People with lung conditions who can’t work from home must be supported.  

They need to be able to perform their work safely, and employers shouldn’t pressure them to work in high-risk areas. This lack of support from some workplaces makes existing health inequalities worse. The worst off are being worst affected, with lower income groups less likely to be able to work from home. 

Share this post with the one thing you wished everyone knew about coronavirus and your lung condition.  

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Following information and advice on here I decided to self isolated the day before Mothering sunday. In Friday May1 my gp surgery rang asking about my shielding and was I following the guidance letter. Explained no letter or text but self isolating. Husband totally of letter and we are doing what it says. We were doing quite a bit before but not all.
I had a lobectomy january 2020 to remove a carcinoid tumour am I high risk as I havent recieved a letter . I have also had a stroke and I have blocked corotid arteries
I totally agree with the results of the survey. I'm well supported by my family and friends but the longer this house arrest goes on the more frustrating it gets. On a positive note, the Physio appointment I should have had in March was cancelled but I have found the videos on your website a great help and a useful stopgap till things get back to normal.
Thanks for the opportunity to take part.  I just have a few observations that may skew results - I am self employed and have a 'portfolio' career so my income has reduced significantly but I'm being asked to do more work online by various organisations whose committees I sit on (without pay) so although I'm busy, I'm quite concerned at long term financial impact as unlikely to receive anything from the government scheme and only a few years from retirement so impact on pensions also likely to hit hard.  wonder whether you could add some categories to the survey as if like me people are self employed, they may have completed the box asking how supportive their employer has been in different ways.... hope this helps.  great work you're doing. 
The question in current survey about wear a mask /facial covering is ambiguous. I have a mask but as I cannot leave home due to shield ing I'm not using it. Also Scottish Government advise asthmatics not to wear face masks. Air pollution quality is difficult to assess, as seasonal high levels of tree & grass pollen affect my asthma so haven't been outside .

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29 April 2020