{"id":5544,"date":"2025-09-19T23:01:00","date_gmt":"2025-09-19T23:01:00","guid":{"rendered":"http:\/\/curiousdrive.com\/?p=5544"},"modified":"2025-09-24T21:33:57","modified_gmt":"2025-09-24T21:33:57","slug":"the-long-covid-legacy-people-dont-want-to-think-about-us","status":"publish","type":"post","link":"http:\/\/curiousdrive.com\/index.php\/2025\/09\/19\/the-long-covid-legacy-people-dont-want-to-think-about-us\/","title":{"rendered":"The long Covid legacy: \u2018People don\u2019t want to think about us\u2019"},"content":{"rendered":"
\n
\n\t\t\"\"\t<\/div>
Five years on from his initial Covid diagnosis, Alex’s life is still severely impacted by the illness (Picture: Alex Sprackland)<\/figcaption><\/figure>\n

When Alex Sprackland caught Covid-19 in March 2020, he thought he\u2019d be back to normal in no time. Yet, five years on, the 34-year-old still grapples with the severe, life-limiting effects of the infection.<\/p>\n

\u2018I was diagnosed with long Covid <\/a> seven months after my initial illness \u2013 my life has never been the same,\u2019 Alex, from Tunbridge Wells, tells Metro<\/strong>. \u2018I had to leave my flat, I lost my relationship, and I moved back in with my parents. I also dropped out of university when I became too sick to finish the course. <\/p>\n

‘I can\u2019t even work, but there\u2019s no support for me. No treatments. Nothing.\u2019<\/p>\n

After contracting the virus, Alex developed a series of symptoms that included an irregular heartbeat, breathlessness, ongoing pain and digestive problems. Initially he was misdiagnosed with chronic fatigue syndrome and prescribed \u2018graded exercise\u2019 by his GP, which only worsened his symptoms.<\/p>\n

Alex bounced between numerous specialists, none of whom could help. \u2018It was demoralising, especially when people didn\u2019t believe me about the symptoms,\u2019 he remembers. <\/p>\n

Six months later Alex was finally referred to the NHS <\/a>long Covid service, but says, \u2018no one knew what to offer me. I ended up going to a private clinic instead and they started some experimental treatments.\u2019 <\/p>\n

However, the decision cost him his place at the NHS clinic, as he was pursuing \u2018off-label treatments\u2019.  <\/p>\n

\n
\n\t\t\"\"\t<\/div>
Before his Covid diagnosis, Alex was extremely active and enjoyed bike riding (Picture: Alex Sprackland)<\/figcaption><\/figure>\n

Although 120 specialised long Covid<\/a> clinics opened in England and Wales<\/a> in 2021, today there are less than 50 \u2013 and Alex is now paying for private healthcare out of his limited savings<\/a> and Personal Independence Payment (PIP) to find answers.<\/p>\n

He is one of approximately 2million people in the United Kingdom with the condition, a chronic, systemic disease that can cause a range of long-term health<\/a> issues, such as severe fatigue, difficulty breathing, chest pain and memory problems. <\/strong><\/p>\n

\u2018It\u2019s all a gamble to find trustworthy information; no one knows enough,\u2019 says Alex, who relies on a wheelchair. \u2018I spend 99% of the time in my room and haven\u2019t seen most of my friends for five years. I\u2019m watching all their lives pass me by, which is probably the hardest thing to deal with, over the symptoms.\u2019<\/p>\n

\n
\n\t\t\"\"\t<\/div>
Alex before and after contracting Coronavirus (Pictures: Alex Sprackland)<\/figcaption><\/figure>\n

School became impossible<\/h2>\n

Avalyn Godfrey, 16, knows the feeling all too well. After catching coronavirus in October 2021 at age 12, she developed long Covid with symptoms of debilitating fatigue, breathlessness, dizziness, sensory issues and brain fog.<\/p>\n

Once a super active kid, Avalyn\u2019s energy slowly disappeared, making lessons impossible to keep up with. After transferring to a more understanding school, where a teacher who also had long Covid advocated for her, the teen\u2019s worsening symptoms made homeschooling the safest option. <\/p>\n

She has since completed six GCSEs at home, but finds it hard to maintain her social life. <\/p>\n

\u2018When you are not in school as a teenager, there aren’t many ways to keep contact with your friends,\u2019 Avalyn tells Metro from her home in Cheshire<\/a>. <\/p>\n

\n
\n\t\t\"\"\t<\/div>
Avalyn’s referral to a long Covid clinic took over a year (Picture: Supplied)<\/figcaption><\/figure>\n

After fighting for over a year to get an official diagnosis, which was delayed by doctors dismissing the teen as \u2018looking for attention\u2019, shewas referred to an NHS long Covid clinic. <\/p>\n

However, Avalyn’s mother, Donna McParland, says treatments were limited and the clinic initially insisted she meticulously log every activity, which her daughter didn\u2019t have the energy to do. <\/p>\n

Then, they moved on to teaching Avalyn about \u2018pacing\u2019 \u2013 an activity management technique used amongst people with chronic illness to help people balance symptoms with everyday life \u2013 and carrying out numerous tests, which all came back normal.<\/p>\n

\u2018When we have appointments, they tell us about new medical studies or tests they’re doing and for a second, you think, “Oh, that’s great,’ says Avalyn. ‘But then nothing happens.\u2019<\/p>\n

\n
\n\t\t\"\"\t<\/div>
Avalyn has had to complete multiple tests in various hospitals (Picture: Donna McParland)<\/figcaption><\/figure>\n

Avalyn hopes that her symptoms will improve over time and that one day, better treatments will be discovered. In the meantime, she\u2019s focusing on achieving her dream of becoming a primary school teacher.<\/p>\n

\u2018I\u2019ve always wanted to be a teacher and I love working with kids; it just feels like something I\u2019m good at,\u2019 she says, hopefully.<\/p>\n

‘I had to go through an ill-health dismissal’<\/h2>\n

Mum of two Jenny Sullivan has also navigated the challenges of long Covid support. A dedicated English teacher with boundless energy and a fierce passion for her work; when she caught coronavirus in September 2023, everything changed. <\/p>\n

After developing severe long Covid symptoms, Jenny was left unable to stand due to dizziness, while also suffering from frequent fatigue and a marked decline in her overall health. She also lives with MCAS (Mast Cell Activation Syndrome), a rare disease that results in a range of allergy-like symptoms. <\/p>\n

After nearly three months of worsening symptoms, Jenny, who lives in Tonbridge, went to the GP for the first time, starting a long journey to diagnosis and treatment for long Covid. <\/p>\n

\n
\n\t\t\"\"\t<\/div>
Jenny before and after suffering with long Covid (Pictures: Jenny Sullivan)<\/figcaption><\/figure>\n

\u2018I was signed off work but thought I would be returning soon – then I found out there was a six-month waiting list to see the cardiologist for my symptoms,\u2019 she tells Metro<\/strong>.<\/p>\n

\u2018It was excruciating to realise, over time, that I wasn\u2019t well enough to work and I had to go through an ill-health dismissal \u2013 then it was even worse to realise there were no decent treatments to help me.\u2019<\/p>\n

Jenny was referred to her local NHS long Covid clinic, but found they couldn\u2019t offer her any advice except pacing and some limited treatments for postural orthostatic tachycardia syndrome (POTS), a condition that causes rapid increases in heart rate and has been diagnosed in many long Covid patients. <\/p>\n

Eventually, she decided to seek help privately and now travels to Liverpool<\/a> to see specialist Dr Binita Kane, who also treats Alex.<\/p>\n

\u2018The problem is, long Covid specialists are so rare and I have to travel so far to see mine to get stabilised just a little,\u2019 says Jenny from her home, having transitioned from a desk to bed to preserve energy while speaking.<\/p>\n

\n
\n\t\t\"Disposable\t<\/div>
NHS England initially delivered long Covid funding through a centralised national programme (Picture: Getty Images)<\/figcaption><\/figure>\n

\u2018The lack of NHS treatment means that some people pay thousands to untrained and unqualified individuals promising \u2018miracle cures\u2019; it\u2019s easy for opportunists to oversell when there are no alternatives.\u2019<\/p>\n

Now unable to work for nearly 18 months, Jenny uses a mobility scooter for outings, which has given her more access to the outside world. However, most of her life is still centred around resting in bed, and she is investing in private care in the hopes of improving her quality of life.<\/p>\n

But she is limited by time, cost and distance. A single private consultation can cost up to \u00a3500, wait times are still up to six months, and Jenny has to travel for access to care, sapping her already diminished energy. <\/p>\n

\n
\n
POLL<\/div>\n
Poll<\/title><\/div>\n<\/p><\/div>\n<h3 class=\"metro-poll__title\">Do you think the UK government is doing enough to support long Covid patients?<\/h3>\n<ul class=\"metro-poll__list\">\n<li data-option=\"option1\" class=\"metro-poll__option\">\n<div class=\"metro-poll__score-bar-wrapper\"><\/div>\n<div class=\"metro-poll__content\">\n<div class=\"metro-poll__text\">Yes, they're doing their best<span class=\"metro-poll__check-icon\"><title>Check<\/title><\/span><\/div>\n<div class=\"metro-poll__score\"><\/div>\n<\/p><\/div>\n<\/li>\n<li data-option=\"option2\" class=\"metro-poll__option\">\n<div class=\"metro-poll__score-bar-wrapper\"><\/div>\n<div class=\"metro-poll__content\">\n<div class=\"metro-poll__text\">No, more needs to be done<span class=\"metro-poll__check-icon\"><title>Check<\/title><\/span><\/div>\n<div class=\"metro-poll__score\"><\/div>\n<\/p><\/div>\n<\/li>\n<li data-option=\"option3\" class=\"metro-poll__option\">\n<div class=\"metro-poll__score-bar-wrapper\"><\/div>\n<div class=\"metro-poll__content\">\n<div class=\"metro-poll__text\">I'm not sure<span class=\"metro-poll__check-icon\"><title>Check<\/title><\/span><\/div>\n<div class=\"metro-poll__score\"><\/div>\n<\/p><\/div>\n<\/li>\n<\/ul><\/div>\n<p>Despite the need for long Covid care still being apparent, many sufferers are facing a dearth of support with doctors who don\u2019t have the funding or knowledge required.<\/p>\n<p>Dr Nikita Kanani, MBE, a GP with extensive experience working with long Covid patients, says that \u2018GPs are doing their best, but they\u2019re often working without the tools or capacity they need.<\/p>\n<p>\u2018There\u2019s been some education and guidance, but it\u2019s not consistent, and many are managing complex cases without access to the specialist support or multidisciplinary pathways they need to refer into.\u2019<\/p>\n<figure class=\"img-container shareable-item wp-caption\">\n<div class=\"img-wrap\">\n\t\t<img width=\"509\" height=\"339\" src=\"http:\/\/curiousdrive.com\/wp-content\/uploads\/2025\/09\/GettyImages-1466533965.jpg\" class=\"article-image wp-image-24187275\" alt=\"black woman napping on sofa\" loading=\"lazy\" \/>\t<\/div><figcaption>Many long Covid sufferers are facing a dearth of support (Picture: Getty Images)<\/figcaption><\/figure>\n<p>While NHS England initially delivered long Covid funding through a centralised national programme, this was passed on to 42 integrated care boards (ICBs) in March 2024. However, many have since shut down clinics or never had one to begin with, according to research by Long Covid Support.<\/p>\n<p>An NHS England spokesperson told <strong>Metro<\/strong>: \u2018More than 100,000 people have been supported by specialist Long Covid clinics since 2020, with NHS staff helping them deal with the physical, cognitive, and psychological effects of <a href=\"https:\/\/metro.co.uk\/tag\/coronavirus\/\" data-track=\"inline-tag-auto-link_article\">Covid-19<\/a>.<strong> <\/strong><\/p>\n<p>\u2018National guidance and funding has been issued to local health leaders to help them create Long-Covid services which best meet the needs of their local area.\u2019<\/p>\n<figure class=\"img-container shareable-item wp-caption\">\n<div class=\"img-wrap\">\n\t\t<img width=\"554\" height=\"312\" src=\"http:\/\/curiousdrive.com\/wp-content\/uploads\/2025\/09\/GettyImages-1955429813.jpg\" class=\"article-image wp-image-24187292\" alt=\"Disease X new pathogen cells\" loading=\"lazy\" \/>\t<\/div><figcaption>‘We are the unfortunate aftermath of the pandemic,’ says Alex (Picture: Getty Images)<\/figcaption><\/figure>\n<h2 class=\"wp-block-heading\">Looking for answers<\/h2>\n<p>However, Alex says he has had to become his \u2018own doctor in many ways.\u2019<\/p>\n<p>He explains: \u2018I am reading the latest research, finding new potential treatments, and then looking for doctors who will prescribe the medications or try the new protocol I recommend. It\u2019s exhausting.\u2019<\/p>\n<p>While energy-draining, Alex admits that being proactive in his treatment helps alleviate some of the frustration. As part of the Long Covid campaign group, Not Recovered UK, he has also helped raised upwards of \u00a312,000 for research.<\/p>\n<p>Avalyn, too, has directed her attention toward raising awareness, working with organisations like Long Covid Kids and writing her own children\u2019s book, called \u2018Star Dizzy Lizzy\u2019, to educate young people.<\/p>\n<figure class=\"img-container shareable-item wp-caption\">\n<div class=\"img-wrap\">\n\t\t<img width=\"646\" height=\"728\" src=\"http:\/\/curiousdrive.com\/wp-content\/uploads\/2025\/09\/Avalyn-with-her-first-book-79d7-e1758104245129.jpg\" class=\"article-image wp-image-24180369\" alt=\"\" loading=\"lazy\" \/>\t<\/div><figcaption>Avalyn with the first book she has written to help educate children on Long Covid (Picture: Donna McParland)<\/figcaption><\/figure>\n<p>Andrea from Long Covid Support believes the answer lies in improving research and maintaining the precious few clinics that remain.<\/p>\n<p>\u2018Research is essential; we need it for diagnostics, for treatment, before we even think about rehabilitation,\u2019 she says.<\/p>\n<p>Dr Kanani agrees: \u2018the scale of suffering from long Covid should justify faster investment in trials and early access schemes. We need a system that can act with urgency, rather than waiting for absolute certainty before supporting patients.\u2019<\/p>\n<p>Beyond stopping the closure of these much-needed clinics, Alex says, too many people think \u2018Coronavirus doesn\u2019t exist anymore\u2019.<\/p>\n<p> He adds:  \u2018we are the unfortunate aftermath of the pandemic that people don’t want to think about. They just want to put their things in their ears and move on with life. We can\u2019t do that though, because we\u2019re living with long Covid.\u2019<\/p>\n<section id=\"share-buttons-bottom\" class=\"share-buttons share-buttons-bottom\"><a class=\"metro-button share-bar-comments\" data-vars-position=\"bottom\" href=\"#metro-comments-container\"><br \/>\n\t\t\t<span><title>Comment now<\/title><\/span><br \/>\n\t\t\t<span class=\"share-bar-comments__label\">Comments<\/span><br \/>\n\t\t<\/a><\/section>\n","protected":false},"excerpt":{"rendered":"<p>Five years on from his initial Covid diagnosis, Alex’s life is still severely impacted by the illness (Picture: Alex Sprackland) When Alex Sprackland caught Covid-19 in March 2020, he thought he\u2019d be back to normal in no time. Yet, five years on, the 34-year-old still grapples with the severe, life-limiting effects of the infection. \u2018I […]<\/p>\n","protected":false},"author":1,"featured_media":5546,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[9],"tags":[],"_links":{"self":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/5544"}],"collection":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/comments?post=5544"}],"version-history":[{"count":3,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/5544\/revisions"}],"predecessor-version":[{"id":5557,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/5544\/revisions\/5557"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media\/5546"}],"wp:attachment":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media?parent=5544"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/categories?post=5544"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/tags?post=5544"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}