Wigan-born campaigner launches Long Covid petition

The Government is being called on to make sure patients have the right support available.

Friday, 14th May 2021, 4:45 am

Louise Barnes, who founded the Post Acute Covid-19 Syndrome Support group online, is trying to drum up public support to help those still suffering symptoms months after first becoming ill on leading petition website Change.org.

Her petition Dying To Live calls on ministers to safeguard those suffering from Long Covid by ensuring they have access to high-quality support and help.

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Long Covid campaigner Louise Barnes

The Department for Health and Social Care (DHSC) said it is investing heavily in trying to understand and treat this new illness.

Louise said: “We feel patients need to be safeguarded from some of these therapies.

“We’re trying to prevent this being labelled as a psychosomatic illness. We know Long Covid patients are developing organ damage and yet some people on the Facebook group have been told they are feeling ill because of childhood trauma or that it’s all in their heads.

“Treatment needs to be science-based and peer-reviewed. Nice has already said that people with similar conditions to us shouldn’t be doing the exercise therapy. It is ridiculous that people are being sent for it.”

The petition says Long Covid patients need to be offered scans to check their organs and describes the current position across the country for getting help as a “postcode lottery”.

Even in areas where clinics are up and running, patients face long delays in seeing professionals, the petition says.

The text also accuses the Government of not listening to Long Covid patient groups about ways of treating the condition.

Louise says she is also keen to keep the issue in the public spotlight as the roadmap for returning to something resembling normal life gathers pace.

She said: “The vaccine roll-out has been quite successful and now we’re talking about getting back to normality.

“That is quite depressing for the 1.1 million of us who are saying life isn’t back to normal.”

Louise is hoping that MPs will pick up on the petition and begin to speak up for Long Covid patients.

She then hopes more political dialogue on the subject can begin.

It is also hoped that enough signatures are collected to put the issue further up the public and political agenda.

A DHSC spokesperson said: “Covid-19 is still a new disease.

“It is not yet clear what the medical, psychological and rehabilitation needs will be for those experiencing long-term effects of the virus.

“Those suffering with the long-term symptoms of coronavirus can now access specialist support at more than 60 sites around the

country.

“To help provide answers to outstanding questions about long Covid we are throwing the clinical book at it, investing more than £50 million so our world-leading scientists are able to better understand the long term effects of the virus and ensure we have the best treatments available.”

To look at the petition or sign it to support the campaign, visit change.org/dyingtolive

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