Invisible Disabilities Week: What You Can’t See Can Still Hurt
The unifying reality of the experience of living with an invisib is that what you can’t see can still hurt—
often more than people realise.
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Recognition - Research - Rehabilitation
NEW GP LEAFLET LAUNCHED
NEW UPDATED GP LEAFLET
NEW!!! We have worked with the RCGP and the Clinical Post Covid Society to completely revise and expand our GP leaflet. It now provides an even more comprehensive guide to diagnosing and treating Long Covid
Read our Press Release here
To complement the leaflet for GPs we have some sound advice and a checklist for people with Long Covid preparing to visit their GP
LONG COVID BILL OF RIGHTS
RESOURCES PAGE PUBLISHED
LONG COVID SOS MERCHANDISE
We are very excited to launch our fabulous new Long Covid SOS merchandise. Choose from amazing designs and logos on a range of products including T-shirts, hoodies, mugs, bags, hats and more - and support our work at the same time
OUR VISION
A world without Long Covid: where prevention is possible, treatment is readily available, and recovery is achievable
OUR MISSION
To throw a lifeline to people living with the impact of Long Covid by pushing for greater recognition and awareness, driving forward targeted research, advocating for prevention and providing support and resources
RECOGNITION
We use our voice to promote recognition and understanding of the experiences of people with Long Covid and its devastating effects on their lives. We do this by: * Advocating for those with Long Covid by, working with key stakeholders including the NHS, policymakers, other organisations and institutions in the UK and worldwide. * Educating the wider public and medical community through social and other media * Promoting understanding on the impact of Long Covid on lives, relationships and work with a view to it being recognised as a disability,. * Providing a platform to share stories and validate the experiences of those with Long Covid * Providing information to people in all communities and reaching out to those who are unaware that they have Long Covid
RESEARCH
We advocate for and encourage inclusive and appropriate research into Long Covid. We do this by: * Representing and promoting the patient voice in research and ensuring that lived experience is central to projects we support * Advocating for inclusive, accessible and relevant research with appropriate understanding of Long Covid * Using our voice to call for more research into effective treatments and prevention * Developing collaborative relationships with researchers and other organisations worldwide to inform research priorities for Long Covid
REHABILITATION
We advocate for and support those with Long Covid to live the best life they can by securing effective and appropriate care and treatment for them. We do this by: * Providing a trusted resource and links to support * Helping those with Long Covid live the best life they can * Listening to those with Long Covid and promoting their lived experience to health policy and decision makers * Using our voice to ensure that treatments are relevant and effective * Educating health practitioners so that they are empowered to treat people with Long Covid with empathy and respect, and to provide appropriate care
ONS_Data
LATEST DATA
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2 million people have Long Covid in England and Scotland: 3.3% of the population
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87.3% first had symptoms at least 12 weeks previously - approx 1.7 million
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71.1% or 1.4 million developed symptoms at least a year ago
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51.3% or 1 million have had symptoms 2 years or longer
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30.6% or 732,000 have been unwell for at least 3 years - this is the largest category
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111,800 children aged 3-17 now affected
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1.5 million people or 74.7% have symptoms adversely affecting their lives
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381,000 (19.2%) report that their ability to undertake their day-to-day activities are "limited a lot"
Highest prevalence as a % of the population:
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Age 45-54 (5%)
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North West (3.8%)
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Greatest deprivation (5.6%)
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Asian or Asian British (4.1%)
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Inactive - not looking for employment (9.1%)
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1.1 million report that symptoms worsen following physical and/or mental effort, including 65.7% of 18-34 year olds
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Fatigue, shortness of breath, difficulty concentrating and muscle ache were the top 4 most common symptoms
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The most deprived are twice as likely to have Long Covid compared to the most well off
STORIES
Alice's story
I have read your submission [to the HSC Inquiry into the NHS Backlog] with great interest and can confirm that my husband and I, who both have Long Covid, have experienced a lot of the problems you describe, with some variations. Main points below, I hope this can feed into your knowledge base on the unfolding Long Covid disaster.
Rob's story
The 9th of September is an auspicious date for me. I bought my current house on that date. I got whiplash in a car accident on that date which paid for corrective eye surgery. And in 2021 on the 9th of September I got Long Covid. I didn't know at the time that that would lead me to become acquainted with Elsie. Elsie. LC. Long Covid. She's certainly not my friend but I feel if I give it a name, I take some ownership.
Sarah's story
I’m at 45 year old wife mother of two, head of a busy events team living in London. The ultimate juggler of life always on the go 6am spin glasses late night gigs and always on my feet always busy till Covid. I think the main thing is that I have lived with this every day for the past year even on the very few good days which I hold onto like a winning lottery ticket.
#LONGCOVIDSOS
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