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[Guest article] Support for people with long COVID

Health Advice Manager at Asthma UK and the British Lung Foundation
10 December 2020

Over the last few months, there has been lots of media coverage of the number of people suffering with lasting symptoms after having COVID-19. Known as 'long-tail COVID' or 'long COVID', people affected are living with a range of ongoing symptoms, from breathlessness and headaches to fatigue and 'brain fog'.

After the 'first wave' of COVID-19 infections, we found increasing numbers of people calling our helpline, desperate for advice about the ongoing symptoms they were experiencing. In response, we set up an online post-COVID hub, a dedicated nurse-led helpline and a WhatsApp service. The aim was to support people with post-COVID breathlessness and other associated symptoms, as well as their families, by providing them with reliable information and dedicated support for their mental and physical recovery.

Why we set up the post-COVID hub

As a lung health charity, we know the impact respiratory symptoms, particularly breathlessness, can have on someone’s day to day life – and how the right support can make all the difference.

As we learn more about the long-term effects of COVID-19, we are continually updating the hub with the latest health advice and helping people to get the support that best suits their symptoms. On the hub we have specialist health advice for people who managed COVID-19 at home, those that were in hospital and those in intensive care. We cover areas such as managing breathlessness, the emotional impact of COVID-19, getting active and sleep issues. If someone needs more personalised support, people can chat to our team on WhatsApp or phone our helpline.

What’s changed since we set up the hub

Since April, we’ve been collecting insights on people’s experiences with long COVID – through the hub, post-COVID helpline and research partnerships. What‘s become clear is how unique the range of symptoms is to each person. As well as breathlessness, people have been telling us about a wide variety of symptoms, including mental health problems. We’ve set up detailed signposting to mental health experts, including other charities and organisations, to ensure people get the help they need.

There’s more detail on how we mapped people’s experiences on our post-COVID blog. The one common experience was that most people have been struggling to access the right support.

At the start of the pandemic, our network of specialists and researchers predicted there would be a group of people who would need ongoing respiratory rehabilitation support after being hospitalised with COVID-19. At that time, we didn’t know much about how some people’s bodies and brains reacted to the virus. We expected that most people who would need the service would have been in hospital with COVID-19.

However, we heard from thousands of people who hadn’t been in hospital and had instead been managing COVID-19 at home by themselves. 3,000 survey respondents (more than 50% of those who took part), told us they were struggling to cope with life after COVID-19 and were having ongoing difficulties.

Looking ahead if you have long COVID

People’s experience of COVID-19 varies widely – and we’re not sure why this is. We know some people may have breathing difficulties after recovering from COVID-19. We don’t yet know if this is from the virus, or from receiving treatment for the virus. We are working to understand more about this, which is why we set up the Post-COVID hub.

Early studies suggest COVID-19 may leave some people with lung problems or damage, upon discharge. It’s not yet known whether this is due to the virus or complications from staying in intensive care. For more information on this research and related studies, visit the Post-COVID hub.

With formal rehabilitation centres being set up around the country and increasing understanding of the whole range of post-COVID issues people can face, the future is looking better for people who have ongoing symptoms. However, there is still a huge need for advice and support. Over the coming months we’ll be updating and improving the post-COVID hub so that we can continue to fill those gaps.

The WhatsApp service was only possible thanks to a generous grant from Bupa Foundation. We’d like to thank Bupa again for their wonderful support.

Wendy Davies
Health Advice Manager at Asthma UK and the British Lung Foundation

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