My Long COVID Needs, developed by the British Lung Foundation, will help people with Long COVID identify their symptoms and aid conversations with healthcare professionals by creating a digital report of their physical and emotional concerns that they can share with them.
The British Lung Foundation has today (1 February 2022) launched its My Long COVID Needs tool to help people living with ongoing symptoms following a COVID-19 infection.
Data1 from the Office for National Statistics (ONS) estimates that more than a million people in the UK are living with long-term effects after catching COVID-19, with symptoms as varied as breathlessness, persistent cough, extreme fatigue, brain fog and muscle aches.
The new online assessment tool is designed to help people feel better supported to manage the impacts of Long COVID and improve access to support services, including from the NHS and charities. People using the tool input information about their physical symptoms, 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, and automates a report that users can give to their GP or healthcare professional.
The tool’s automated report function means people living with Long COVID don’t have to tell their story multiple times to different healthcare professionals. This is a frustration that many people with the condition have shared with the British Lung Foundation2. Patients have reported feeling “exhausted” by having to repeatedly relay their symptoms. One woman told us: “I am fighting to be heard by relevant authorities. My situation has sky-rocketed my anxiety, affecting my breathing.” Another said: “I feel like I haven’t been taken seriously or believed by medical professionals or friends. It has made me angry as I feel weak and trapped in my own body.”
Long COVID is a multi-system condition with a range of symptoms. To ensure the tool provides the most comprehensive advice and represents the diverse needs of people with the condition, the British Lung Foundation developed it collaboratively with a number of other organisations with different areas of expertise3, including Long COVID support groups and charities Diabetes UK and Stroke Association. More than 70 people living with Long COVID gave feedback and helped test the tool.
Although services are being developed to address the needs of people with Long COVID, research from the British Lung Foundation suggests many people experience barriers, including feeling that their condition is not being taken seriously. People have told the charity that their doctors have been “very dismissive” and that there is “very little support” out there for them. While the British Lung Foundation continues to campaign for further investment in the NHS to support people with Long COVID, it hopes the tool will help people manage their symptoms and provide vital support and advice for people living with the condition.
Amanda Watson, NHSE Long COVID Project Lead at Asthma UK and the British Lung Foundation, said:
“Long COVID has forced many of the million people living with the condition to put their lives on pause while they tackle multiple disabling symptoms like persistent breathlessness. The My Long COVID Needs tool offers vital advice and support for people as they navigate their way through this new and unpredictable condition, and provides patients with an easy-to-read report that they can share with their doctor. We’d encourage anyone experiencing Long COVID to visit the tool and for healthcare professionals to share this resource with their patients: https://mylongcovid.org.uk/my-long-covid-needs.”
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1 – ONS data on the prevalence of Long COVID in the UK: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2december2021
2 – British Lung Foundation research on patients’ symptoms and experiences following COVID-19: https://bmjopenrespres.bmj.com/content/8/1/e001075.abstract
3 – The tool was developed in partnership with: Fifth Sense, Long COVID SOS, Long COVID Aid, Long COVID Support, ME Association, Citizens Advice, Stroke Association, Diabetes UK, Rethink Mental Illness, Age UK, National Voices, Association of Mental Health Providers, Macmillan Cancer Support, MQ and Hope for the Community.