Is Long Covid Being Forgotten?

Long Covid is a chronic condition that can affect individuals for months or even years after recovering from the initial Covid-19 infection. Many people, like Alex Sprackland, Avalyn Godfrey, and Jenny Sullivan, continue to experience debilitating symptoms that severely impact their quality of life. This article explores their stories, the current state of long Covid care in the UK, and the urgent need for improved support and research into this complex condition.

Last updated: 09 October 2023 (BST)

Key Takeaways

• Long Covid affects approximately 2 million people in the UK, leading to a variety of chronic symptoms.
• Many patients face a lack of effective treatments and support from health services.
• Awareness and research into long Covid are crucial for developing better diagnostic and treatment options.
• Patients often feel isolated and struggle with the long-term impacts on their personal and professional lives.
• Community support groups and advocacy are essential for raising awareness and funding for research.

The Reality of Long Covid

Long Covid is a term used to describe a range of symptoms that persist long after the initial Covid-19 infection has resolved. Symptoms can include severe fatigue, breathlessness, irregular heartbeat, and cognitive difficulties, commonly referred to as "brain fog." These symptoms can severely limit daily functioning and quality of life.

For Alex Sprackland, a 34-year-old from Tunbridge Wells, the aftermath of catching Covid-19 in March 2020 was life-altering. Initially expecting a swift recovery, Alex's reality shifted dramatically as he struggled with long Covid symptoms. Seven months post-infection, he received a diagnosis, but the journey to find effective treatment has been fraught with challenges.

Living with Long Covid: Personal Stories

Alex Sprackland's Journey

Alex's symptoms included an irregular heartbeat, breathlessness, ongoing pain, and digestive issues. Misdiagnosed with chronic fatigue syndrome, he was prescribed graded exercise by his GP, which only exacerbated his condition. Frustrated and demoralised, he sought help from numerous specialists, all of whom were unable to provide effective solutions.

Eventually, Alex turned to the NHS long Covid service, but found little support. "No one knew what to offer me," he lamented. As a result, he started pursuing private healthcare, funding it through his limited savings and Disability Living Allowance. While Alex is one of approximately 2 million people in the UK with long Covid, he faces the dual challenge of managing his health and navigating the healthcare system.

Avalyn Godfrey's Experience

At just 16 years old, Avalyn Godfrey contracted Covid-19 in October 2021. Once a vibrant and active child, she now faces debilitating fatigue, dizziness, and sensory issues that have made traditional schooling impossible. After struggling for over a year to receive an official diagnosis, Avalyn's symptoms led her to a long Covid clinic, where she found limited treatment options.

Her mother, Donna McParland, recounted the difficulties of dealing with a healthcare system that often dismissed Avalyn's symptoms. "They insisted she log every activity, which was unrealistic given her energy levels," Donna said. Despite the challenges, Avalyn remains hopeful for the future and is determined to achieve her dream of becoming a primary school teacher.

Jenny Sullivan's Struggles

In September 2023, Jenny Sullivan, a dedicated English teacher and mother of two, contracted Covid-19 and subsequently developed severe long Covid symptoms. After nearly three months of increasingly debilitating health issues, she sought help from her GP, only to discover long wait times for specialist appointments.

Jenny was referred to a local NHS long Covid clinic but found their offerings inadequate. "They could only suggest pacing and limited treatments for postural orthostatic tachycardia syndrome (POTS)," she explained. With her symptoms persisting, Jenny opted for private care, travelling long distances to access specialist treatment, which she could barely afford.

The State of Long Covid Clinics in the UK

In 2021, over 120 specialised long Covid clinics opened across England and Wales to provide support for those affected. However, as of now, this number has dwindled to less than 50 clinics. Many patients like Alex and Jenny are left navigating a fragmented healthcare system with limited support and resources.

According to research by Long Covid Support, while NHS England initially provided funding for long Covid services, many clinics have either closed or have never been established in certain regions. This has created a significant gap in care for those suffering from this complex condition.

The Importance of Research and Awareness

Dr Nikita Kanani, an experienced GP in long Covid care, highlights the need for better education and resources for healthcare professionals treating complex cases. "GPs are often managing patients without the tools or capacity they need," she noted. There is an urgent call for increased investment in research to develop effective treatments and diagnostic tools for long Covid.

Community efforts to raise awareness and funds for long Covid research are crucial. Alex Sprackland has actively participated in campaigns, helping to raise over £12,000 for research initiatives. Similarly, Avalyn Godfrey's engagement with organisations like Long Covid Kids demonstrates a proactive approach to tackling the challenges posed by this condition.

What Lies Ahead for Long Covid Patients?

The journey for long Covid patients is fraught with uncertainty. While some individuals have reported gradual improvement in their symptoms, many continue to struggle with the long-term impacts on their health, social lives, and employment. As the healthcare system grapples with the ongoing challenges of providing care, the need for dedicated research and support services remains critical.

Dr Kanani advocates for a system that acts with urgency, stating, "The scale of suffering from long Covid should justify faster investment in trials and early access schemes." Until more effective treatments and comprehensive support systems are established, patients like Alex, Avalyn, and Jenny will continue to navigate their lives with resilience in the face of adversity.

FAQs

What is long Covid?

Long Covid refers to a range of symptoms that persist for weeks or months after the initial Covid-19 infection has resolved. Symptoms can include fatigue, breathlessness, and cognitive difficulties.

How many people in the UK have long Covid?

Approximately 2 million people in the UK are estimated to be living with long Covid, experiencing various long-term health issues following their infection.

What treatments are available for long Covid?

Currently, treatments for long Covid are limited, often focusing on symptom management and rehabilitation techniques like pacing. There is an urgent need for more effective therapies and research into the condition.

What should I do if I suspect I have long Covid?

If you suspect you have long Covid, consult your GP for assessment and support. They can guide you through the available options and refer you to a long Covid clinic if necessary.

Is long Covid recognised by healthcare providers?

Yes, long Covid is recognised by healthcare providers, but awareness and understanding of the condition can vary. Some patients may face scepticism regarding their symptoms.

As the long Covid crisis continues to unfold, it is crucial that we prioritise research, support, and awareness for those living with this debilitating condition. How can we ensure that the voices of long Covid patients are heard in the ongoing discussions about healthcare and treatment? #LongCovid #Healthcare #ChronicIllness