Darwen support group 'vital' for people with long Covid

The Coffee and Chat group for was set up by Karen Haworth from Darwen

A woman who set up a support group for people with long Covid, says the illness "still needs to be on the health agenda".

The Coffee and Chat group was set up by Karen Haworth from Darwen after she developed Covid in March 2020 and was having symptoms four months later.

The face-to-face and online groups can include up to 100 people.

"The world has moved on but for people with long Covid, we are still here suffering with symptoms," she said.

She said the pandemic was "a scary time for everybody, but for people who were really suffering with the illness it was an additional stress, because people didn't know what was happening".

"I got Covid in March 2020 and by July I was having one symptom after another, I wasn't the person I was before I caught Covid.

"The support is vital because it's a place where people can come and they feel understood, they feel validated," she said.

Jean McCluskey asks people to be more compassionate towards long Covid patients

Long Covid patient Jean McCluskey, from Ormskirk, said she suffers from fatigue, shortness of breath and brain fog.

"People see you and think you're looking well," she said. "But it's a hidden disease and they don't understand you can't do things."

She said professional help has been "patchy", but has found support from the online group.

She said: "There's no judgement, you can talk about how you're really feeling.

"When it first started, I didn't know what was what was going on. I couldn't understand it because long Covid wasn't known then.

"It wasn't until 2020, and I tried to go back to work, and I was struggling a lot with fatigue and shortness of breath and my brain.

"It was that bad I couldn't answer my phone at one point I didn't know how to do it."

She is now calling for "understanding and people believing that it actually exists".

"A lot of us are actually getting starting to get worried about how far that's going to go if it's going to improve or get worse, so be compassionate," she said.

Andrew Ellis said it was "frustrating" it took 18 months to be referred to a long Covid clinic for support

Andrew Ellis, a single dad from Morecambe said he was struggling to look after his daughter and run his business because of the effects of long Covid.

He said he got Covid in November 2021.

"I didn't feel it was going to get dangerous at any point," he said, "but I was bedbound for two or three days and looked to be getting over it, then in the following weeks there was just a slow ramp back up to getting all the symptoms back, even more so.

"For me it's severe fatigue, severe cognitive issues, memory loss and trouble getting words out.

"I now work from home out of necessity, going into the office is just an attack on the senses. I can't do it any more."

He said it was "frustrating" it took 18 months to be referred to a long Covid clinic for support, but it was "refreshing to talk to someone who was knowledgeable".

"The NHS is under stress, but it seems a heck of a long time to wait."

A Department of Health and Social Care spokesman said: "Long Covid can have a debilitating impact on people's physical and mental health, that's why we have backed our world-leading scientists with over £50m to better understand it and identify new treatments.

"NHS England has also invested £314m to expand treatment and rehabilitation services, establishing 100 long Covid services for adults and 13 specialist paediatric hubs for children and young people."