Long Covid: Sufferers set up their own support group in Falkirk area

The illness sees them suffer a range of symptoms including severe fatigue or post-exertion malaise (PEM), shortness of breath, myocarditis, inflammation of the heart muscle, joint pain, headaches, rashes. Long covid patients can also develop anxiety and depression, as a result of the severity of physical symptoms they endure.

There have been demands for urgent action to help sufferers with patients having to push to get the right care and treatment.

Now two local woman have decided to set up a support group where those with the condition can meet and chat.

Suzanne Grant and Noreen Walton will host their first meeting this Friday, June 17 between 2pm and 4pm in Brightons Community Hall in the village Main Street.

Their venture has already attracted interest with long Covid sufferers hoping to attend not only from across the district but Glasgow, Ayr, Fife and the Scottish Borders.

Suzanne, 48, said: “This really highlights that there is so little out there for people with this illness. We don’t have any expertise other than knowing what it is like to have this condition but if we can meet up with others to chat about how we feel, hopefully it will help people in some way.”

She said that when she contracted Covid 11 months ago the symptoms appeared mild, but it is the after effects which she has found so debilitating.

Suzanne added: “It was like having a cold but a couple of weeks later I just went downhill. In the last 11 months I’ve picked up a lot of other illnesses and there are days when my legs just don’t seem to work.”

The accountancy worker from Redding added: “I feel that I’ve been robbed of my life by long Covid.”

Noreen, 61, from Bo’ness, said she remembers that she tested positive on her daughter’s birthday last year, November 27, and despite being double vaccinated she has been “floored” by the symptoms of long Covid.

She said: “It’s been horrendous. I had terrible headaches which are only easing off now and constantly caught other infections. I was so concerned by the brain fog that I asked my GP if I had early onset dementia but she said it was a classic symptom of long Covid.

"Neither Suzanne or I have any medical knowledge but thought it would be a good idea to set up this group to give people the opportunity to meet up, talk and share experiences.”

The pair thanked local businesses including Tesco, Asda, B&M and Rouken Glen for donations of tea, coffee and biscuits. Carers are also welcome at the meetings.

The Scottish Government has recently announced a support fund of £3 million will go towards projects driving improvements in care and support for people with long Covid.

Health Secretary Humza Yousaf said: “We believe people with long Covid should be able to access care and support as close to their home as practicable.

“Given the range of symptoms which can be involved, we know there’s no ‘one size fits all’ response, so we have engaged with NHS boards, clinical experts and those with who have been, and are currently, affected by long Covid to identify the support needed.

“Our investment through the Long Covid Support Fund will enable boards to bolster existing services, plug any gaps in provision and improve the way they work together collaboratively for the benefit of people with long Covid.

“And we’ll continue to support those living with long Covid while more scientific study into proven, safe, evidence-based treatments continues.”

A spokesperson for NHS Forth Valley said:” There are a range of local services, including those provided by our ReACH rehabilitation teams, which are able to support people experiencing long-term health issues due to Covid-19. People can also access support from their local GP practice who are able to refer to specialist health services, where required.

"Work is also underway to develop additional local services and support to meet the needs of local people experiencing long term effects of Covid-19 and other long-term health conditions.”

Local information is available from NHS Forth Valley here and more details on the NHS Inform website