Campaign for 'long-tail' Covid-19 patients steps up

She formed the online group Post Covid-19 Syndrome Support which now has more than 3,000 members reporting still being seriously ill with a massive range of symptoms weeks and months after initially coming down with the coronavirus.

Louise, who lived in the borough until she was a teenager, is now demanding urgent meetings with ministers to ensure people with long-term health needs as a result of the pandemic receive the support they require.

A petition calling for rehabilitation centres to be set up across the country now has around 10,000 signatures and Louise has drawn up a range of measures she would like to see implemented to aid long-tail Covid-19 patients.

She is also calling for changes in the way treatment, support and research related to Covid-19 is currently being set up, saying a reliance on positive test results and referrals from medical professionals will exclude many people in her group.

She said: “The group is rapidly growing. If people are still getting symptoms in 20 weeks then there’s something not right.

“We’re going to send in the petition for face-to-face rehab centres available irrespective of testing. I was planning to go to Downing Street but I don’t think that’s going to happen.

“At least the health minister Matt Hancock has publicly acknowledged us as a significant minority. I’ve sent him lots of letters and another group has written him an open letter.

“I’ve also launched another petition about the Government’s Covid recovery plans and have spoken to Therese Coffey about this. Ministers and the NHS think you can get referred for antibody tests but a lot of our group members can’t and some of us have tested negative.

“It’s the same problem with research projects. A lot of them don’t take us because we’re untested.”

Louise says she is particularly concerned that patients who have tested positive may be eligible for MRI and CT scans of their organs to find out what the long-term damage to their bodies from Covid-19 is.

She is desperate for her group members to be able to get scanned due to the alarming number and nature of symptoms they are experiencing.

These include sudden hair loss, rashes across the body, incontinence, heart racing and palpitations, chronic fatigue and psychological disturbances such as seeing flashes and objects or waking up and feeling something is in the room.

Shockingly Louise has found by questioning and surveying her group members that many long-tail Covid-19 patients are experiencing between 35 and 55 different symptoms in the space of a week, with some having up to 80 in the course of their illness so far.

She has written twice to prime minister Boris Johnson and says she is keen for the country’s most powerful politician to publicly recognise what long-term patients are going through.

With the online group now including people from more than 60 countries Louise is also taking her campaigning international, with plans to raise awareness of the problem in the USA,

Closer to home, she is also drawing up a list of things that could be done in Britain to make life easier for those who have had the worst reactions to the coronavirus.

She said: “We’re proposing temporary blue badges so people with mobility problems can park close to supermarkets, hospitals and surgeries, and emergency access cards for toilets.

“The card could also help with supermarket queuing and shop queues, as many retailers do not provide seating. With chronic fatigue shopping is becoming burdensome.”

Louise also wants hospitals to open clinical slots at weekends where patients with complex symptoms can be seen by a panel of specialists.

This would prevent adding to the existing NHS backlog of treatments for serious illnesses such as cancer, which were postponed due to the pandemic.

She said: “A lot of people are feeling quite bitter actually. They decided not to go to hospital because they were scared or didn’t want to catch Covid-19 or didn’t want to add to the pressure on the NHS and now they can’t get any help.

“The problem is we’re untraceable. We don’t know how many of us there are, unless hospitals really dig into the records which they haven’t got the time or resources to do.”

Louise also detailed some of the shocking problems people in the group, 70 per cent of who were healthy before they contracted the virus, re experiencing.

It is estimated as many as one in 20 people who have had Covid-19 could have long-term symptoms or effects, and fewer than five per cent of Louise’s group members have described themselves as having recovered.

She said: “We’ve had members saying they’ve resigned or lost their jobs. Some have been told to return to work and just can’t do their job any more because it’s too much. Some of our group are basically bedridden and can barely walk.

“The incontinence is extremely embarrassing and we’ve had reports of employers not being very sympathetic. We’ve also had problems with people being told they’ve got anxiety or depression.

“Some people still haven’t got a clue about this and some have never even heard of long-tail Covid-19.”

To find out more visit www.facebook.com/groups/868936136917020/

The petition for NHS rehabilitation centres is at www.change.org/p/the-nhs-ceo-s-and-uk-government-set-up-clinics-in-all-major-uk-hospitals-for-covid-long-tail-sufferers