As the UK Covid-19 Inquiry resumes with a focus on healthcare systems in each of the four nations, the Long Covid Groups (comprising Long Covid Support, Long Covid SOS, Long Covid Physio and Long Covid Kids) are shocked and deeply concerned to learn that Long Covid clinics are being closed at a time when reported cases are continuing to rise.
Charities and many medical experts have long maintained we are in the midst of a global health crisis. Without a concerted effort to address this issue, the closures will only add to the significant burdens already being faced by healthcare systems and economies.
Recent data from the US has suggested that Long Covid may affect up to 7% of the population and prevalence could rise further. The latest ONS updates have shown that incidence of long-term sickness is at record levels and has been on an upward trajectory since early 2020. Staff shortages and high levels of school absenteeism are frequently reported across the UK. The annual productivity loss in the UK resulting from Long Covid is currently estimated to be £1.5 billion.
This stark picture contrasts with the lack of support Long Covid patients are receiving. At the start of the year, there were close to 100 Long Covid clinics for adults and 13 hubs for children and young people (CYP) in England. Earlier this year however, the highly regarded NHS England national programme was stood down with responsibility for Long Covid services being delegated to each of the Integrated Care Boards (ICBs). In recent months, patients and staff have reported the closure and a severe scaling back of clinics including Devon, Hampshire, Hertfordshire, Lancashire and Surrey. Key personnel and resources are being subsumed into other NHS services and, in some cases, staff are leaving the NHS altogether. Some CYP hubs are being forced to take on patients from those that have already closed with no extra funding.
In the other UK nations, the provision of Long Covid services is individual to each health board with no centrally agreed model on what Long Covid clinics should look like. They mostly focus on therapies designed to help patients manage their conditions rather than being clinician led. There is only one service dedicated to paediatrics in Scotland with none in Northern Ireland and Wales.
The Long Covid Groups urge all governments and healthcare providers to adopt a service model that prioritises dedicated clinics supported by experienced clinician-led, multidisciplinary teams. Given the complexity and multi-faceted nature of the condition, the Long Covid Groups stress that specialists from each of the relevant disciplines should work collaboratively. In partnership with patients, they call for a healthcare framework that is dedicated to successfully diagnosing, treating and preventing Long Covid; this will contribute towards relieving the operational and financial pressures on the NHS.
Amitava Banerjee, Professor of Clinical Data Science and Honorary Consultant Cardiologist & Long Covid SOS Trustee
“The evidence for the health, healthcare and economic effects of Long Covid, whether on individuals or societies, is unequivocal. Therefore, we must ensure that coordinated research and care are prioritised for Long Covid."
Sammie McFarland, CEO & Founder, Long Covid Kids
"Appropriate funding and resources would provide clinicians with the best possible opportunity to improve patients' lives, but this hasn't been forthcoming. Rising school absenteeism and Long Covid in children are red flags demanding immediate action. Closing specialised clinics risks creating a healthcare vacuum with far-reaching consequences for healthcare, education, families, and the future workforce."
Professor Mark Faghy, Vice-Chair of Long Covid Physio
“The scaling back and closure of services around the UK at a time when the prevalence of Long Covid is rising seems counterintuitive. Before these decisions were made, there were calls from patients and healthcare workers to grow services and ensure consistency across the UK but it seems to be going the other way.”
Nikki Smith, Founding Member, Long Covid Support
“With many people now getting Covid-19 multiple times, the risk of having on-going symptoms of Long Covid is increasing, which will result in more pressure on the NHS, fewer people able to work and an even bigger hit on the economy. It must be a priority of our new public service Government to ensure effective Long Covid clinics that are up to date with the latest research, are accessible by all.”
Further information
For further information please contact: Anthony Burr, anthony@burrmedia.co.uk / +44 7766 459469, jacton@longcovidkids.org
Our Mission
We believe all children should be able to thrive and look forward to a positive future
The charity focuses on raising awareness of how Long Covid presents in children and young people and we do this by co-producing quality research with leading Long Covid researchers. We support children, young people and their families through, peer to peer and expert knowledge sharing, and through active representation at meetings with key stakeholders including those in government, healthcare and education.
We work collaboratively with other charities and services supporting children and young people with conditions associated with Long Covid or Post Viral Illness. We strongly believe that this inquiry can capitalise on lessons learned from Long Covid but also by comparison with past experiences of other post viral illness. It’s time to make sure we approach any future pandemics from a standpoint of awareness of and knowledge of how to prevent and treat post viral illness.
Our Added Value
Being party to the thousands of stories of day to day life living with Long Covid, and combining this with the empathy of having a Lived Experience led team means that we know what is important to children, young people and their families. We also hear what worked well, and conversely what didn’t in terms of the government, healthcare and education response to the acute pandemic. More importantly we can also represent experiences and insights of the here and now.
We conducted key surveys with the University of Derby on the experiences of Healthcare and Education that meant that we were able to share this with key representatives from these areas in order to address challenges and inequities, as well as sharing experiences of good practice.
https://www.longcovidkids.org/post/how-does-long-covid-impact-attendance-and-educational-experiences
Having children and families willing to contribute to the resources we develop such as our award winning support guide and the educational toolkit video series means that the voices of lived experience bring to life how small changes in attitude and practice can have an immeasurable effect on the lives of those living with Long Covid.
Our Youth Advisory Panel is an opportunity for young people to contribute to developing opportunities for peer support and giving vital input and insight to researchers who work with the charity. We have been so impressed with how much these young people are willing to give of themselves in order to raise awareness - and more importantly with the aims of preventing their peers having to experience the challenges they have faced.
You can read more about our work in the first annual review
About the Children We Represent
Long Covid is a unique experience for each individual child or young person. We acknowledge and represent that difference in our advocacy and campaigning, seeking to ensure that those who struggle to be heard are. We share stories of hope and recovery as well as those that represent the very real and sometimes devastating effects that Long Covid have on families.
Ella’s school didn’t understand how severe an impact Long Covid was having until she received the support from Long Covid services (services that Long Covid Kids was involved in campaigning for in the early stages of the pandemic). https://www.longcovidkids.org/post/ella-it-s-all-in-her-mind-long-covid-kids-real-life-stories
Simon’s family perfectly express the caution with which families now approach ‘good days’ because of the fluctuating nature of the condition.
Read other real life stories - https://www.longcovidkids.org/real-life-stories
