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Demand for Long COVID support from leading lung charity doubles

Sunday 15th May 2022

Hundreds of thousands of people living with Long COVID in the UK are turning to charity Asthma + Lung UK for advice and support, as cases of the new and unpredictable condition surge to nearly two million1 and almost a third of people2 wait more than 15 weeks for an initial appointment into a Long COVID clinic in England.

In the past six months, around half a million people3 have visited the leading lung charity’s online Long COVID health advice or called its helpline for tailored support for wide-ranging symptoms including breathlessness and persistent coughs. The numbers of people viewing the webpages nearly doubled from September to March, as cases of Omicron spiked across the UK.

The Asthma + Lung UK helpline, which is staffed by respiratory nurse specialists and healthcare advisers, takes thousands of calls every month, including from people needing advice about Long COVID4. Calls to the helpline increased at the beginning of the year – the charity says many callers are at crisis point and so desperate to ease their symptoms they are asking for advice about buying oxygen to manage their Long COVID breathlessness, which can be extremely dangerous without a prescription. The helpline has also taken calls from people wanting information on private healthcare providers because they’re struggling to get help from the NHS.

Long COVID cases in the UK are rapidly increasing, with the most recent data estimating that 1.8 million people in the UK are living with long-term symptoms following a COVID-19 infection, with breathlessness cited as one of the most common symptoms alongside the likes of chronic fatigue, brain fog and a persistent cough.

But Long COVID cases far outstrip the support available for people to manage their symptoms.

In England, clinics were set up in November 2020 to assess people experiencing Long COVID symptoms, and data shows around 4,500 people getting into these clinics for initial appointments in March 2022, which is roughly the same numbers that have been being seen every month since the data was released5. The latest data, for March, shows that almost 1 in 3 people (30%) people waited more than 15 weeks for an initial appointment.

NHS England does not publish data on the overall number of people still waiting for initial appointments – only those that get appointments that month – meaning there could be thousands more people trying to access care. Wales, Scotland, and Northern Ireland have different models for assessing and managing Long COVID.

People are turning to charities like Asthma + Lung UK, which is offering support through its helpline and online health advice.

Lois Spencer-Tracey, 39, has been living with debilitating Long COVID symptoms since being struck down by the virus in November 2020.

Lois, a lifestyle blogger who was a marathon runner before catching COVID-19, has experienced a range of symptoms including breathlessness, blurred vision and acid reflux.

“Having Long COVID has been completely exhausting, mentally and physically. I’ve never experienced breathlessness before and all of a sudden after catching COVID-19 I would get very breathless doing the smallest of tasks or even before going to sleep. It’s a terrifying experience. I’ve struggled to get through the day without napping, and in November 2021 I became so unwell with sharp pains in my arms, dizziness, and sickness that I was taken to A&E for fear I was having a heart attack or had suffered a stroke.

“The lack of support has been really frustrating. I’ve spoken to several doctors, but I just think they don’t know what to do with people like me. I’ve been passed from pillar to post, and it does sometimes feel like my concerns are falling on deaf ears. Like lots of people, I have been reliant on advice from charities such as Asthma + Lung UK and reaching out to other people with this horrible condition on social media.

“I just don’t think there’s enough education out there about the risks of Long COVID, including how prevalent it is and how debilitating it can be. Unfortunately, I’ve found out the hard way.”

Sarah Woolnough, CEO of Asthma + Lung UK, says:

“As we near the grim milestone of two million people living with Long COVID, there is still a dismal lack of treatments for this disabling condition, which is leaving people fighting for breath and devastating every aspect of their life, health, work and relationships.

Caroline Fredericks, a Respiratory Nurse Specialist on the Asthma + Lung UK Helpline, says:

“An increasing number of people with Long COVID are turning to us at breaking point.  We’ve heard from people who feel like they’re hitting a brick wall, as they try to access the support they so desperately need.

“With more than 20 possible symptoms of Long COVID, ranging from breathlessness to tinnitus, it can be tricky to know where to start. But we are here to support everyone with a lung condition with our advice and a listening ear. We would urge anyone who is worried to pick up the phone and call our helpline on 0300 222 5800.”

-ENDS- 

Notes to Editors 

For more information, to speak to storytellers, or for interview requests, please contact the press team on 0207 786 4949 or press@asthmaandlung.org.uk.

Asthma + Lung UK

Asthma + Lung UK is the only charity in the UK fighting for everyone with a lung condition, aiming for a world where everyone can breathe with healthy lungs. We fund research. We provide advice and support for the 12 million people who will get a lung condition during their lifetime. We campaign for clean air and we campaign for better NHS diagnosis and treatment. For further information visit asthmaandlung.org.uk

References  

1 – Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK Office for National Statistics Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/6may2022

2 – COVID-19 Post-Covid Assessment Service National Health Service England Available at: https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-post-covid-assessment-service/

3 – Website traffic to Asthma + Lung UK’s Long COVID health advice pages

September 50,035
October 59,640
November 79,098
December 93,218
January 144,914
February 96,961
March 92,380

4 – Calls to the Asthma + Lung UK helpline related to Long COVID

Every month the helpline receives around 2,000 calls. In September the helpline took 22 calls about Long COVID, and in February it took 59. Please note that while the figures look small, these are just the cases where people have specifically called about Long COVID. We often find that callers may initially call about another issues (such as breathlessness) but the support we offer is about Long COVID.

5 – Numbers of initial appointments at Long COVID clinics, COVID-19 Post-Covid Assessment Service National Health Service England Available at: https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-post-covid-assessment-service/

July 4,254
August 3,519
September 4,168
October 4,508
November 4,599
December 4,750
January 2,869
February 4,045
March 4,435

 

6 – Percentage of people waiting more than 15 weeks for an initial appointment, COVID-19 Post-Covid Assessment Service National Health Service England Available at: https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-post-covid-assessment-service/

August 19%
September 32.5%
October 34%
November 33%
December 35%
January 34%
February 36%
March 30%