Supporting people with Long COVID to get their lives back on track
It’s estimated that more than a million people in the UK are living with long-term symptoms following a COVID-19 infection, and many struggle to access the specialist support they need to manage their health. Our sister charity, The British Lung Foundation, has collaborated with a coalition of 15 charities, to create an online assessment tool that helps people identify their symptoms and access support services. Our Project Lead Amanda Watson, who led on the development of the new tool, tells us more about our it.
Long COVID is a new and unpredictable condition, with wide-ranging impacts that have the potential to be totally life-changing. Many people living with Long COVID have told us that their lives have been turned upside down by side effects as varied as breathlessness, extreme fatigue and brain fog, and that they’re struggling to get the dedicated support they need to manage these symptoms.
We’ve worked with a number of other organisations to try and offer people the support they need. This has culminated in the creation of our new tool, My Long COVID Needs.
People with Long COVID are frustrated by the lack of support
While services are being developed to help people with Long COVID, with the NHS under extreme pressure, this is taking time. Data shows a third of people referred into dedicated clinics in England are waiting upwards of 15 weeks for their first appointment. Others are struggling to get a referral in the first place.
Lucy, who has asthma, has been living with debilitating Long COVID symptoms for almost two years now, including breathlessness and extreme fatigue. She’s been forced to dramatically reduce her work hours and move back home with her mum, who helps her out with everyday tasks like cooking. Lucy reflects:
“I just wish there were better treatment options for people in my situation and pathways that were easier to navigate and understand. I know it’s really tough for the NHS at the moment, but I haven’t felt well supported – for months my symptoms were blamed on my asthma. In early 2021, I had to chase down my referral into an assessment centre, which is no mean feat when you’re feeling so unwell.”
We want to help people with Long COVID get the best advice and support they can
It’s unsurprising that people are turning to charities, like Asthma UK, and the British Lung Foundation, for support. We’ve had thousands of calls to our Helpline from people concerned about COVID-19, including many from those who are worried about long-term effects and frustrated by the lack of support out there for people in their situation.
Some people tell us that they feel stuck in limbo as they’re passed around between various healthcare professionals and services, at every stage having to relay their Long COVID story.
We’ve worked in collaboration with 15 other organisations with different areas of expertise, including Long COVID Support and Diabetes UK, to develop a new online assessment questionnaire. The tool is called My Long COVID Needs and is funded by NHS England and Improvement.
More about our Long COVID tool
My Long COVID Needs is designed to help people feel better supported to manage the impacts of Long COVID and improve access to support services, helping to address some of the most common concerns we’re hearing through our Helpline. More than 70 people living with Long COVID helped to test and give feedback on the tool.
People using the tool input information about their physical, practical and emotional concerns and the impact on their day-to-day life, which then brings up useful advice and links to other relevant support services. It also automates a report that users can give to their GP or healthcare professional, which means people don’t have to tell their Long COVID story multiple times to different healthcare professionals.
We will keep fighting for people with Long COVID
We hope My Long COVID Needs will help people manage their symptoms and provide vital support and advice for people living with the condition. But we know this isn’t a replacement for specialist health care – this is something we will keep campaigning for.
The problem of Long COVID is not going to go away, and it’s vital the government invests in training and employing more specialist NHS staff to ensure that people with Long COVID can access the specialist care they so desperately need.
If you’re living with Long COVID and want to share your story to raise awareness about the condition, please email: yourstory@blf.org.uk
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