Keyworker Petition Campaign - March 2025 Snapshot Survey Results and Briefing
Hello everyone, it’s been a while! We’ve all been having an unfortunate bout of ill-health and chronic conditions (including Long Covid) flares and it’s not pretty. However Rachel managed to put together and write up a snapshot survey to gather more data and Cass is in talks with other groups about getting another big survey of Keyworkers moving to get even more new data. We’ve decided to release the report today, International Long Covid Awareness Day.
Colleagues (including cofounders of this campaign) will be appearing across the media (One of us has an image on a Digivan going around London and others are in the media) during this period, if they’re well enough.
Here’s the report: Look out for our tweets sharing statistics on Twitter/X and please share them far and wide.
Thanks to everyone to all you do to support us. C, R & S.
Briefing - Keyworker Petition UK
Long Covid Awareness Day, 15th March 2025.
As we mark 5 years since the global Covid-19 pandemic began, we feel it’s important to explore the very real situations that those left with Long Covid are finding themselves in.
The APPG on Coronavirus released a list of key recommendations in March 2022 including -
“Launch a compensation scheme for keyworkers living with Long Covid, which goes beyond the existing system of sick pay.”
This is yet to happen despite the troubling results of our survey in March 2023, delivered to 10 Downing Street on International Long Covid Day 2023.
It’s also interesting that this report from the APPG on Coronavirus is nearly impossible to find online now, despite being widely shared and debated at the time.
The APPG also disclosed the the key findings of -
-Long Covid is having a significant impact on the UK workforce (leading to an estimated 1.82 million days lost to health care workers alone, between March 2020 and September 2021).
-Long Covid is likely to become endemic within the population, alongside Covid-19 itself.
-Many people with Long Covid acquired it through occupational exposure.
-The failure to identify Covid-19 and Long Covid as an occupational disease is out of step with other European countries.
This also remains the same 3 years on from this report and 2 years on from the 126k signatures on the petition, along with the survey results delivered to 10 Downing Street on International Long Covid Day 2023.
(Change Petition, Keyworker Petition UK, 2023) and (Survey results 2023, Keyworker Petition UK).
Therefore, please see the attached survey findings from March 2025 conducted again by the Long Covid suffering volunteers at Keyworker Petition UK, to highlight the further impact of ignoring our last findings and the report recommendations for our once hailed ‘hero’ Keyworkers.
We would also like to take this opportunity to highlight the impact on those with Long Covid would have by the reduction or removal of benefits such as PIP, ADP, Industrial Injuries Disablement Benefit, ESA etc. The current and previous survey results clearly show the financial impact of Long Covid on all with the condition, and we implore you to support this very needed financial support for our most vulnerable society members. This is a new onset condition that no one was prepared for, therefore why should our keyworkers and others with Long Covid suffer financially for their misfortune?
Many of these Keyworkers and others with Long Covid were at the prime of their careers and earning capabilities and couldn’t have foreseen such impact on their lives. For those we asked to step up, surely we have a responsibility to compensate and support them for their losses now?
It costs over £1000 a month to be disabled in the U.K. (Scope, Disability Price Tag, 2024) and these benefits are already an extremely low contribution to this cost. It should only be increased, not removed.
Long Covid continues to ruin lives. It ends careers, financial stability, good health and wellbeing and prosperity of the people we called upon to sacrifice themselves in a global pandemic.
Thank you for your time and efforts in support of those with Long Covid. Please treat these survey results with the respect and courtesy they deserve. We at Keyworker Petition UK and with the entire Long Covid community call on you to act NOW.
Lives depend on it.
Keyworker Petition UK, March 2025.
References
Scope, Disability Price Tag 2024
https://www.scope.org.uk/campaigns/disability-price-tag
Keyworker Petition UK - Petition Link
https://www.change.org/p/create-a-compensation-pension-scheme-for-key-workers-with-long-covid
Summary of the All-Party Parliamentary Group report on Long Covid March 2022
Findings
-Long Covid is having a significant impact on the UK workforce (leading to an estimated 1.82 million days lost to health care workers alone, between March 2020 and September 2021).
-Long Covid is likely to become endemic within the population, alongside Covid-19 itself.
-People with Long Covid have difficulty seeking advice and support.
-Rigid phased returns to work and the denial of flexible working options are having a negative impact on those with Long Covid.
-Many people with Long Covid acquired it through occupational exposure.
-The failure to identify Covid-19 and Long Covid as an occupational disease is out of step with other European countries.
-Long Covid symptoms are wide-ranging.
-The current Long Covid pathways, including Long Covid clinics are inadequate and do not meet current demand.
-The absence of a legal definition for Long Covid is resulting in many Employment Tribunal claims.
-Classifying Long Covid as a disability could increase access to financial support and provide employment protections.
-Long Covid can have a significant impact on a child’s education and the response from schools has been very variable.
-Children with Long Covid also experience a wide range of symptoms, and these can differ from those of adults with Long Covid.
Recommendations
As a result of these findings the APPG made the following recommendations, which the government may or may not chose to implement. The UK government is asked to:
-Commit £100 million per annum to fund research into diagnostic and treatment pathways for people with Long Covid.
-Urgently produce guidelines for employers (private and public sector) for managing Long Covid in the workplace.
-Launch a compensation scheme for keyworkers living with Long Covid, which goes beyond the existing system of sick pay.
-Urgently review Long Covid care pathways to ensure Healthcare system is capable of meeting current and future demand.
-Propose a legal definition of Long Covid which recognises the relapsing and remitting nature of the condition and assess the applicability of existing disability provisions for people living with Long Covid.
-Accurately measure, report, and monitor the number of people, including children, living with Long Covid in the UK.
-Add Long Covid to the list of considerations when making public health policy.
-Launch specialised care pathways for children living with Long Covid.
-Issue guidance to schools on the management and support of pupils with Long Covid.
-Issue urgent guidance to medical practitioners on Long Covid in children and adults.
https://www.gmlaw.org.uk/2022/04/05/appgs-long-covid-report-and-findings-do-they-go-far-enough/
Key findings from March 2025 Keyworker Petition UK Survey
-All respondents are frontline keyworkers, survey sample size of 512.
-Only 11% of Keyworkers have been able to access Industrial Injuries Disablement Benefit despite Long Covid being recognised as a work acquired injury.
-Only 21% of Keyworkers have achieved Ill Health Retirement for their debilitating Long Covid disability. It should be noted that even those who have been awarded it are often at significant financial loss to their usual annual salary.
-38% of respondents have lost up to 30% of their income and 46% have lost more than 30%.
-77% of respondents have lost their job/career.
-67% of respondents have lost their financial security.
-96% of respondents have lost their physical and mental health stability.
-23% of respondents are in debt due to Long Covid.
-26% of respondents have sold possessions to make ends meet.
-60% of respondents have lost their ability to afford the little luxuries that that their previous incomes allowed pre Long Covid.
Survey Responses
“I have been a nurse for 40 years now and didn’t expect my exceptional and gleaming career to end like this.”
“I was a healthy very active person. Long covid has cost me my job , independence and health. For 5 years I have felt like I am existing not living.”
“Over four years on, I am now bedbound and dependent on my parents for daily care and financial support. I was only doing my job, and I can’t believe it has come to this.”
“I am within weeks of losing my home if I cannot secure employment, aged over 61… (Long Covid doesn't officially exist, and my GP refuses to discuss it) my prospects are slim.”
“So many of us in the same position yet no acknowledgement from the govt or society what we are going through. No useful data, no help for health conditions, no continuity of care and lots of gas lighting.”
“My life has changed considerably since contracting COVID. I am mainly housebound and have to use a wheelchair if I leave the house. I’ve lost my job and the majority of my friends.”
“My Long covid has took away me being a mum to my 3 children and I have lost my 2 jobs and my relationship broke down after 20 yrs and I've lost myself.”
“I was an RAF Nurse. I have been medically discharged. I am unable to work in my previous role but have not been given a medical pension. I am still battling the Armed Forces Compensation Scheme even though I have now been unwell for 5 years.”
“I stayed in my job because I thought it mattered. The public clapped for us, but now I'm a worthless parasite leeching off taxpayers.”
“My life expectancy has been reduced I’m sure. My children have lost their mum, my husband his wife, my friends their friend, my mum her care giver, the NHS an excellent doctor, society a healthy, functioning contributor.”