Impact
Since May 2020 we have been working to support people with Long Covid, calling for Rehab, Research and Recognition (to which we later added Return to work). We are proud to be recognised for the impact of our work, examples of which are listed below.
Rehab and Support
- Establishing a tightly moderated, private online peer support group that has more than tens of thousands of members in 100 countries. We host an active programme of online social and wellbeing activities including our Long Covid Choir, weekly Zoom chats, chair yoga, opera breathing, and other areas of potential help or interest to our members.
- Providing patient and public voices to UK bodies involved with Long Covid, including with NHS England, Department of Health and Social Care, National Institute for Health Research and National Institute for Care Excellence, as well as World Health Organisation.
- Advising and providing insights from our ongoing survey into patient experience of seeking referrals to Long Covid services.
- Developing our LongCovid.org website - recommended to patients by health professionals - to share resources and links.
- Contributing to the development of the UK clinical guideline on Long Covid, which signposts to our organisation.
- Developing a leaflet to reach as many people as possible.
Research
- Working with ISARIC and GloPID-R to organise the Long Covid Forum in December 2020, the first international research conference on the condition, which was opened by WHO Director General Dr Tedros Adhanom Ghebreyesus.
- Establishing the Covid-19 Research Involvement Group, a thriving forum in which researchers, investigators and academics interact with patients.
- Working extensively with researchers, including as co-investigators, members of advisory groups and co-authors of numerous papers published in respected journals.
Recognition
- Being instrumental in driving the adoption of the Long Covid term after it was first used in a tweet by Italian archaeologist Dr Elisa Perego.
- Receiving recognition for our work from WHO Director General Dr Tedros Adhanom Ghebreyesus.
- Giving frequent interviews in local, national and international media, as well as conference presentations.
Return to Work
We have a dedicated team focused on employment and benefits, comprising people with professional as well as lived experience. Our work focuses on supporting workers and employers with return to work, and we have co-developed materials with bodies including the UK's Society of Occupational Medicine and Chartered Institute of Personnel and Development (CIPD).
What People Say
- “The World Health Organization is honored to support the Long Covid Support Group and are committed to working side by side with you.”
- Dr Tedros Adhanom Ghebreyesus, Director General, World Health Organization - "The Long Covid Support Group is a vital and necessary way in which we can talk to each other about the symptoms that bother us and in some cases immobilise us or terrify us. We need to know that we are not isolated, not fantasists. When we lie awake at night wondering if we are alone with this or that pain or disability, the group is a huge comfort, reassurance and support. But more than that, it is vital that we are heard. Long Covid Support is also about numbers saying to society, 'We are the pandemic too.' "
- Michael Rosen, author, broadcaster and member of Long Covid Support Group.
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Long Covid Support and Long Covid Kids publish the first ever data on the effect of Covid reinfections on people with Long Covid
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- Written by Long Covid Support
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Read our letter to the UK's new Prime Minister, Liz Truss.
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- Written by Long Covid Support
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Here are four members of Long Covid Support (Claire Hastie, Monique Jackson, Dr Jo House and Dr Elaine Maxwell) exploring the most effective approach to protecting patients with Long Covid. Taken from HSJ's Patient Safety Congress 2021.
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Long Covid Support partner with TUC to assess impact on employment and call for action
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Long Covid Support Employment Group have submitted a response to the Department for Work and Pensions, Shaping Future Support: the Health and Disability Green Paper consultation on 11th October 2021. You can read our response here: Long Covid Support Employment Group Response PDF
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On July 8th, Long Covid Support wrote to Sajid Javid urging that, when evaluating policy, he takes account of the devastating and prolonged impact that Long Covid can have on people of all ages.
You can read the letter here: Long Covid Support letter to Sajid Javid 8 July 2021.pdf
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Updated analysis of data from our ongoing survey into patient experience of seeking referral to Long Covid clinics in England. This presentation also includes feedback from our Facebook support group.
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In this updated analysis we look more closely at what is happening by region.
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- Written by Long Covid Support
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Updated analysis of data from our ongoing survey into patient experience of seeking referral to Long Covid clinics in England.
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- Written by Long Covid Support
- Category: Impact
This survey has been designed by Long Covid Support to collate information on the patient experience of Long Covid clinics in England (also referred to as Assessment Centres), announced on December 18th, 2020.
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