Greater Manchester Long Covid campaigners keeping condition in spotlight as data shows how prevalent it is

People from Greater Manchester who are suffering from Long Covid have been speaking about their experiences as new statistics suggest how common the condition is.

Data from the Office for National Statistics (ONS) analysed by our sister title NationalWorld suggest that around one in 30 people in the North West could now have Long Covid symptoms.

Campaigners and Long Covid sufferers who have been battling ill health since first contracting Covid-19 some two years ago have spoken of the need to keep the issue in the spotlight.

They also want the Government to act on issues ranging from clinical trials of potential treatments for the condition to problems with the benefits system.

What does the latest Long Covid data show?

The Office for National Statistics (ONS) has published estimates of how many people have Long Covid.

It worked this out from survey data looking at how many people self-reported having Long Covid symptoms in the four-week period up to 1 May 2022.

This only included people living in private households, so did not look at people in communal establishments such as halls of residence, prisons, residential schools, hospitals, or care homes.

The figures suggest that in that time around 237,000 people were living in the North West with Long Covid.

This equates to around 1 in 30 people in the region’s population.

Around 108,000 people who reported Long Covid symptoms in that period initially caught coronavirus, or suspected they first had it, more than 12 months previously.

That means that of the North West residents self-reporting Long Covid, some 46% of them had been battling their symptoms in some form for at least a year.

The North West figure for Long Covid’s prevalence is roughly the same as the rate for England as a whole.

And the region has a slightly higher percentage of people self-reporting the condition than the UK average.

What have Long Covid campaigners said about the data?

Louise Barnes is originally from Wigan and runs the online group Post Acute Covid Syndrome 19 (PACS19) for people who have Long Covid.

She has faced a lengthy and nightmare health ordeal herself since initially contracting the novel coronavirus and has been helping to test out a novel treatment for people with Long Covid.

She said the ONS stats revealing two million people could well have post-Covid symptoms across the whole of the UK gives impetus to her current campaign to insist the Government funds a full clinical trial of this treatment.

Louise said: “Longhaulers have mostly been ill for up to two years or more, and day by day we see more longhaulers emerging.

“Those longhaulers that took part in our trial are showing that they can get sequelae free largely between 12 and 18 months on it.

“I have made the UK Government aware of the progress of this treatment and the promising results show that for most patients, they are able to resolve their longhaulers symptomology.

“The medical team need around £2million to clinically trial it and it will take some time. Two years is already too long and so we have launched a petition to the UK Government to fund such a trial which is needed from a patient safety perspective.

“It is heartbreaking to see people who do not take it remaining the same or deteriorating.

“PACS19 is now calling on the UK Government to fund a full clinical trial. It may need tweeking for the few who cannot take one or two ingredients. For the vast majority though, it has worked.

“The impact of PACS or Long Covid is going to weigh heavily on the economy and so the Government should also consider a low impact, low cost treatment that is shown to be working, even if as a bridging treatment.”

You can find out more about this or do your bit to persuade the Government to fund a trial using the Change.org petition here.

One Greater Manchester person’s ongoing experience of Long Covid

Vicky Rushbrook-Naylor, from Standish, has experienced a two-year health ordeal since she first got Covid-19.

She spoke about the ongoing impact it is having on her and some of the difficulties she is experiencing, from getting hold of things that can alleviate the problems she faces to having enough money to live on.

She said: “I’ve been told that I have about 70% lung function and the damage is irreversible now. I’m not as out of breath as I was but I still struggle with stairs and hills.

“I’ve still got chronic fatigue. I was told to try vitamin B12 but I couldn’t get it on the NHS, I had to source it locally.

“One of my major problems at the moment is I can’t get benefits. That is a nightmare. We’re surviving because my husband works but I tried to get PIP and got turned down.

“When somebody with chronic fatigue, fibromyalgia and Long Covid is surviving on ESA something seriously needs sorting. I’ve had to let my nursing registration go because I haven’t worked for two years, which was soul-destroying. It feels like I finished my career on a real low.

“It’s hard enough being ill 24-7 without wondering how you’re going to do a food shop. It’s just ridiculous. It costs you every time you go to a hospital appointment, I’ve got to pay for the B12, it doesn’t come cheap.

“I can’t believe that two years down the line I’m not really much further forward.”

What has the Government said?

Responding to PACS19’s call for a clinical trial of a novel treatment, a Department of Health and Social Care spokesperson said:“Long Covid is a new challenge for healthcare systems all over the world and the UK is leading the way on research, treatment, and care.

“We are backing our world-leading scientists with over £50 million to better understand the long-term debilitating effects of Covid, so we can ensure the right help and the right treatments are available.

“The NHS has committed £224 million to support people with ongoing symptoms of Covid, with over 90 specialist clinics offering services to adults, children and young people.”

Asked by ManchesterWorld about how the benefits system deals with Long Covid, a Department for Work and Pensions spokesperson said: “Our strong financial safety net supports millions of people with disabilities and health conditions every year, and it is our utmost priority everyone receives the benefits to which they’re entitled and experiences a supportive and compassionate service.

“PIP assessments are carried out by trained healthcare professionals, who carefully consider how an individual’s disability or long-term health condition impacts their day-to-day life.

“Independent research shows that the right decision is made first time in the vast majority of cases.”