2024-03-05 11:15:44 +0000
To: Prime Minister Rishi Sunak
Urgent Investment for Long Covid: Call to Action for Prime Minister Rishi Sunak
UPDATE: We received a response to our letter from Maria Caulfield MP. You can read the letter here: https://shorturl.at/hmnI2 We are currently reviewing the contents of the letter and assessing the next steps we will take in response to it. We remain committed to advocating for our cause and will continue to keep you updated on any developments through our social media channels.
On behalf of those with Long Covid and endorsed by several clinicians and researchers, the Long Covid Groups delivered a letter to No. 10 Downing Street on the 6th December 2023.
Please sign our petition in support of our letter.
Our letter:
Dear Prime Minister,
We write on behalf of the 1.9 million people in the UK, including 62,000 children and young people, who are living with long-term impairment and disability following a COVID-19 infection. In addition to representing their voices, our concern extends to those previously infected with SARS-CoV-2 who are unaware of the potential life-limiting issues they could face in the future due to the damage inflicted by this virus.
We, as an alliance of charitable organisations comprising Long Covid Kids, Long Covid Support, Long Covid SOS and Long Covid Physio, share grave concerns about the lack of investment in biomedical research and clinical trials into treatments that could address the complex pathophysiology and improve the health outcomes of individuals whose lives have been seriously affected by this condition.
(please see our website for the full copy of the letter)
On behalf of those with Long Covid and endorsed by several clinicians and researchers, the Long Covid Groups delivered a letter to No. 10 Downing Street on the 6th December 2023.
Please sign our petition in support of our letter.
Our letter:
Dear Prime Minister,
We write on behalf of the 1.9 million people in the UK, including 62,000 children and young people, who are living with long-term impairment and disability following a COVID-19 infection. In addition to representing their voices, our concern extends to those previously infected with SARS-CoV-2 who are unaware of the potential life-limiting issues they could face in the future due to the damage inflicted by this virus.
We, as an alliance of charitable organisations comprising Long Covid Kids, Long Covid Support, Long Covid SOS and Long Covid Physio, share grave concerns about the lack of investment in biomedical research and clinical trials into treatments that could address the complex pathophysiology and improve the health outcomes of individuals whose lives have been seriously affected by this condition.
(please see our website for the full copy of the letter)
Why is this important?
Our collective appeal is centred around the urgent need for a clear road map on targeted investment in biomedical and health research. We propose a comprehensive 5-step strategy that includes:
1. Dedicated Research Funding: Allocate resources specifically earmarked for biomedical and health research into both adult and paediatric Long Covid. By doing so, we can accelerate the pace of discovery by uncovering the intricate pathophysiology of the condition.
2. Collaborative Research Initiatives: Foster interdisciplinary collaboration between research institutions, healthcare providers, charitable organisations and those with lived experience to create a unified approach with shared expertise, resources, and data, leading to more robust and impactful studies.
3. Treatment Trials: Fund and expedite clinical trials for potential treatments. By streamlining regulatory processes and providing support for innovative therapies, we can fast-track the development of interventions that improve health outcomes.
4. Public Awareness and Education: Invest in public awareness campaigns to educate individuals about the potential long-term consequences of COVID-19 and the barriers and stigma they may experience with it. Early awareness can prompt proactive healthcare-seeking behaviour and contribute to more effective management of the condition which in turn will reduce the impact on healthcare services.
5. Service Provision: Continue funding specialised services to support adults, children, and young people (along with their families) who are suffering from Long Covid.
Long Covid, identified as a chronic condition, has demonstrated varied outcomes in paediatric services, with 56% improving one functional severity category while 40% remain broadly the same level of impairment and 0.4% show deterioration. At 6 months, the largest UK service has demonstrated that the number of children and young people with over 50% school attendance has more than doubled.
Moreover, individuals with Long Covid exhibit the highest healthcare utilisation over a 2-year period, spanning general practice, emergency department, and outpatient care. They also demonstrate the second-highest rates of hospital and critical care admission when compared to both pre-pandemic and pandemic control groups. Long Covid care, estimated at over £3000 per person per year, is nearly four times more than care for the same individuals before the pandemic and nearly three times as much as care in age- and comorbidity-matched individuals before and during the pandemic.
Given these substantial healthcare needs and associated costs, patients require ongoing management, monitoring, and support through specialised clinical networks. These networks should be designed to seamlessly integrate research findings into clinical care, ensuring a comprehensive and effective approach to addressing the challenges posed by Long Covid.
1. Dedicated Research Funding: Allocate resources specifically earmarked for biomedical and health research into both adult and paediatric Long Covid. By doing so, we can accelerate the pace of discovery by uncovering the intricate pathophysiology of the condition.
2. Collaborative Research Initiatives: Foster interdisciplinary collaboration between research institutions, healthcare providers, charitable organisations and those with lived experience to create a unified approach with shared expertise, resources, and data, leading to more robust and impactful studies.
3. Treatment Trials: Fund and expedite clinical trials for potential treatments. By streamlining regulatory processes and providing support for innovative therapies, we can fast-track the development of interventions that improve health outcomes.
4. Public Awareness and Education: Invest in public awareness campaigns to educate individuals about the potential long-term consequences of COVID-19 and the barriers and stigma they may experience with it. Early awareness can prompt proactive healthcare-seeking behaviour and contribute to more effective management of the condition which in turn will reduce the impact on healthcare services.
5. Service Provision: Continue funding specialised services to support adults, children, and young people (along with their families) who are suffering from Long Covid.
Long Covid, identified as a chronic condition, has demonstrated varied outcomes in paediatric services, with 56% improving one functional severity category while 40% remain broadly the same level of impairment and 0.4% show deterioration. At 6 months, the largest UK service has demonstrated that the number of children and young people with over 50% school attendance has more than doubled.
Moreover, individuals with Long Covid exhibit the highest healthcare utilisation over a 2-year period, spanning general practice, emergency department, and outpatient care. They also demonstrate the second-highest rates of hospital and critical care admission when compared to both pre-pandemic and pandemic control groups. Long Covid care, estimated at over £3000 per person per year, is nearly four times more than care for the same individuals before the pandemic and nearly three times as much as care in age- and comorbidity-matched individuals before and during the pandemic.
Given these substantial healthcare needs and associated costs, patients require ongoing management, monitoring, and support through specialised clinical networks. These networks should be designed to seamlessly integrate research findings into clinical care, ensuring a comprehensive and effective approach to addressing the challenges posed by Long Covid.
