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The Event
On March 15th, 2025, Long Covid Support launched its three-year Community Strategy at an event held at the Lyric Theatre in Hammersmith. Marking Long Covid Awareness Day, it was a deeply moving afternoon that brought the community together under the theme "Coming Together, Reflecting on Our Progress, Shaping What’s Next." It was a moment to recognise how far the Long Covid community has come and to lay out the plan for the road ahead.
Backdropped by the Long Covid Support Community Banner, Trustees Dr Margaret O’Hara and Aimie Cole spoke alongside special guests: Rt Hon Jo Platt MP, Chair of the All-Party Parliamentary Group (APPG) on Long Covid, and Professor Danny Altmann, Trustee and leading Long Covid researcher at Imperial College London.
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INITIAL STATEMENT
Long Covid Support are still fully digesting the proposals in the Green Paper and, having assessed them fully, will contribute to the consultation on the Green Paper. Given the failings of the previous consultation, this needs to be a considered and accessible process, with sufficient time for a response. We would like to trust our submission to be taken into account. Below is our initial statement.
Long Covid Support is disappointed that in announcing changes to social security for disabled people in its Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper, the Government has failed to acknowledge the lived reality of the Long Covid community, who we know through our support groups and advisory work are already finding it difficult to access benefits. Indeed, the effect the ongoing Covid pandemic is having on the welfare system has not been acknowledged, despite thousands of new infections and around 100 deaths weekly where Covid is cited on the death certificate.
Estimates of the prevalence of Long Covid vary,but the scale of those affected is undeniably vast. As of March 2024, the Office for National Statistics (ONS) reported that approximately two million people in England and Scotland are living with Long Covid. Of these, 1.5 million experience an adverse impact on their daily activities, with 381,000 severely limited. The condition has persisted for a significant duration in many cases, with over a third of individuals affected for more than two years and many from 2020 now suffering for over four years. Long Covid continues to pose an ongoing risk, with 178,000 new cases emerging during the 16-week survey period in 2023/24.
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Vital Long Covid Services Closing Across the UK Despite Ongoing Need, Our New Report Warns
Read the full report here: Disabled, discharged and disappearing from view
A new report from Long Covid Support & Long Covid Kids reveals that specialist Long Covid services across the UK are shutting down or at risk of closure, leaving thousands without access to essential care.
At its peak, there were over 120 Long Covid services nationwide, but now:
- Only 46 have confirmed they will remain open.
- 31 are under review.
- 24 have already closed or are set to close.
- 20 did not respond.
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The APPG (All-Party Parliamentary Group) on Long Covid will be meeting on Wednesday 26th February 2025. The meeting is for MPs and Peers only and all Members of the APPG have been invited.
If your MP is not yet a Member, please send them an email asking them to join and to come along to the meeting. A list of current members can be found on the APPG's webpage here. If you are not sure who your MP is, you can search for them here.
To assist, we have drafted some wording for you to copy, paste and adapt:
Subject: Invitation to attend upcoming meeting of the APPG on Long Covid
Dear [insert MP name]
You will have previously received an email from Jo Platt MP inviting you to join the APPG on Long Covid. The next meeting (for MPs and Peers only) is taking place on Wednesday 26th February 2025 at 3:30pm at Portcullis House.
As you know, Long Covid is a life-altering condition that is affecting over 2 million people in the UK, with knock-on impacts being felt far and wide, including on the health service, workforce and economy. Most people know someone with ongoing symptoms following Covid-19 illness. You may have Long Covid yourself, have a family member, friend or colleague with Long Covid, or have had other constituents with Long Covid or their carers reach out to you.
[Tell your personal story if you wish.]
Given the importance, I hope you will join this critical APPG and that you, or your Parliamentary Assistant, can attend the meeting (please contact Jo Platt MP to confirm attendance).
Yours sincerely
[Your name and full address, including postcode]
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Given the current scrutiny around Long Covid clinics in the UK and news of some clinics closing, Long Covid Support wanted to establish the level of services currently available. We sent out Freedom of Information (FOI) requests to each Trust, ICB and Health Board in the UK to determine the services they provide.
The responses to our requests are summarised below, broken down by nation:
England
Northern Ireland
Scotland
Wales
Please note this information relates to the point in time at which the response was received. We’re aware that some services have closed recently. If you’re concerned that your local service has closed, is being closed or is under threat, please visit the website below for advice on what you can do.
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Join us in raising awareness about Long Covid by contributing to our Long Covid Support Banner, a collective tapestry representing people living with Long Covid and their caregivers.
This banner will be the centrepiece of our Long Covid Awareness Day campaign on March 15th 2025.
How to Contribute
1. Choose your fabric: Select any colour or type of fabric. Approximate size: 6cm x 30cm
2. Personalise it: Share your story by writing, embroidering, or decorating your fabric in a way that feels meaningful to you. No artistic skills are required to make your piece. It could be as simple as writing your name on an old T-shirt with a pen.
3. Contact details: If you’d like to stay updated on the banner, please provide your name and email address along with your fabric piece. Your details will remain confidential and will only be used for communication related to the banner project.
4. Post your finished piece to:
LCS LCA Campaign
PO Box 731
Brentford
TW8 1EH
United Kingdom
5. For those unable to send in fabric: We’ll create and add a piece on your behalf. Please fill out this form [or have a caregiver do so on your behalf, if possible]: LCA Banner Form.
6. Deadline: Please ensure your piece reaches us by 1st February 2025 to be included in the banner.
We welcome pieces from anywhere in the world. However, as we are based in the UK, we anticipate most contributions will come from here.
Please Note: The banner will be publicly exhibited and featured in a film (details to be confirmed later). By sending your fabric piece, you consent to its use in these contexts.
We aim to create a powerful representation of Long Covid and its impact. Your contribution will help bring this vision to life. Please share with your networks to help spread the word. Thank you very much for your support.
Have any Questions?
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We are proud to be selected as the Secretariat for the All-Party Parliamentary Group (APPG) on Long Covid. We take with us the voices from the Long Covid community, ensuring focus remains on Long Covid & what is needed to progress Prevention, Awareness, Support & Treatment of this life-altering illness.
The official letter from Jo Platt MP reads:
Long Covid APPG
It is truly an honour to be elected Chair of the All-Party Parliamentary Group for Long Covid.
In 2020, I experienced the life-altering impact of Long Covid firsthand. It was an incredibly isolating time, as I struggled to understand why my health had changed so drastically. I felt lost and alone, unsure of what was happening to me. It wasn’t until I discovered Long Covid Support online that I finally began to feel seen and understood. Their community and resources were a lifeline, helping me to navigate the challenges and find hope in the midst of uncertainty.
I continue to be inspired by the dedication and expertise of Long Covid Support, and I am delighted that they will serve as the Secretariat for the Group. Their incredible work will be instrumental in guiding discussions within the Group and shaping our efforts as we move forward.
Our discussions today highlighted the urgent need to address Long Covid through greater awareness, stronger prevention measures, and better support for those affected—physically, emotionally, and socially. We hope to work with the Government to take meaningful action, including prioritising research, increasing transparency, and providing updated data to ensure a clear understanding of the condition’s prevalence and impact.
It is essential that the more than two million people in the UK living with Long Covid have access to the care, resources, and support they need to rebuild their lives.
The Group will officially get started in the new year and will meet regularly to drive forward this vital work. I look forward to collaborating with colleagues, advocates, and experts to ensure progress is made and drive meaningful change.
Thank you to Long Covid Support and everyone who came along today. Exciting things ahead!
Jo Platt MP
Member of Parliament for Leigh and Atherton
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Do you have Long Covid, are you a carer for someone with Long Covid or do you know someone with Long Covid?
If so, please make sure that your Member of Parliament is aware that an APPG (All-Party Parliamentary Group) on Long Covid is being set up, by sending an email to your MP today.
To assist, we have set up the following wording for you to copy, paste and adapt:
Subject: Invitation to join APPG on Long Covid
Dear [insert MP name]
You will by now have received an email from Jo Platt MP inviting you to join the APPG on Long Covid.
As you know, Long Covid is a life-altering condition that is currently affecting over 2 million people around the United Kingdom, with knock-on impacts being felt even more widely. Most people know someone with Long Covid. You may have Long Covid yourself, have a family member, friend or colleague with Long Covid, or have had other constituents with Long Covid or their Carers reach out to you.
[Tell your personal story if you wish]
The inaugural meeting for the APPG on Long Covid is on Monday 9th December 2024 at 4:30pm.
Given the importance, I hope you will be able to join this vital APPG and if possible attend the meeting.
Yours sincerely
[Your name and full address, including postcode]
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Long Covid Support welcomes the Government’s Get Britain Working White Paper's increased focus on health, treatment and bringing down NHS waiting lists.
We also welcome the launch of an independent review into how employers can be better supported to employ people with disabilities and chronic health conditions, and to keep them in the workplace.
Failings in workplace health and safety, inadequate sickness leave arrangements and lack of reasonable adjustments have had devastating consequences for workers disabled by Long Covid. One in seven workers with Long Covid have lost their jobs to their new disability and more than half have experienced unfair treatment at work, according to the Long Covid Support and TUC survey published last year. Two in three were key workers in health, social care and education, many were NHS workers, as the Covid Inquiry has heard. It is problematic that prevention of Covid and other airborne infections is not mentioned in the White Paper section on prevention first approach to health.
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We are pleased to share the excellent presentation given by our advisor, Dr. Jenny Ceolta-Smith, at the Greater Manchester Coalition of Disabled People event on "Good Employment for Disabled People" held on October 8, 2024.
You can watch her talk here: https://www.youtube.com/watch?app=desktop&v=tGM8v0lPDoU
In her presentation, titled “Bad Language: Economic Inactivity,” Jenny discusses the impact of stigmatising language surrounding economic inactivity. She advocates for a benefits policy that enables people to #LiveWell even when they cannot work.