23% of people living with Long Covid in Scotland say their daily lives have been ‘affected a lot’ – compared to 19% UK-wide

Scots have been more severely affected by Long Covid, a survey has found.

Scotland’s largest charity supporting people living with Long Covid, Chest Heart and Stroke Scotland (CHSS), has raised concerns about the impact the condition is having on the lives of people in Scotland.

The comments come after the ONS’s latest data estimates that while the number of Long Covid cases has dropped to 75,000, the number of people whose daily lives have been severely affected by the condition in Scotland remains stubbornly high.

According to the ONS, Scotland saw 23% of people with Long Covid stating that their daily lives have been severely affected by the condition, compared to the UK-wide average of 19%. This is an increase proportionally on the last month’s figures and consistently higher than the UK as a whole.

CHSS fear that people living with Long Covid in Scotland are still struggling to get the right support and feeling as if they have to suffer in silence.  

The charity, who have been working with the NHS and Scottish Government to create a coordinated nationwide care-pathway between the NHS, GP’s and CHSS, is calling for the Scottish Government to accelerate efforts to integrate services and commit more resources to make sure the NHS can care for people with Long Covid.

CHSS is also urging people to seek support now, through their Long Covid Support Service. Sufferers and family members can access support, advice and reassurance in dealing with the most common symptoms like breathlessness, fatigue and the impact on mental wellbeing.

Jane-Claire Judson, chief executive of the charity, said: “While we welcome seeing a reduction in cases, it is really concerning to see that people living with Long Covid in Scotland seem to be more severely affected compared to the UK average and England.

“This worrying trend won’t be helped by the gaps in Long Covid care we’re seeing in Scotland. More really needs to be done to improve the care available to people with Long Covid – and quickly.

“We’ve taken the first step. Our Long Covid Support Service can help people manage symptoms like fatigue, breathlessness and provide support for mental wellbeing. It’s ready to take pressure off GPs and the NHS, but we need to be fully integrated with the health service to make the referral process easier so that people living with Long Covid feel supported from diagnosis right through to getting the long-term support they need to live well.

“There’s a need for resources for the NHS too so that people can get the diagnosis and treatments that they desperately need. We need to see action on this now.”

GP Amy Small is living with Long Covid and was forced to give up her partnership due to her illness. Dr Small is working with CHSS to promote and support the work of the Long Covid Support Service to ensure patients are receiving the right support.

Dr Small said: “I know firsthand how devastating living with Long Covid can be and how frustrating it is to feel like you have nowhere to turn.

“Help and support is available from Chest Heart & Stroke Scotland’s Long Covid Support Service. They have trained nurses with expert knowledge who can provide support, tailored to each patient’s needs.

“When I’m speaking to patients suffering from Long Covid, it’s invaluable to me as a GP to have a service that I can confidently send them to, knowing that they’ll be given the help and support they need to manage their condition.

“However, more still needs to be done for Long Covid care in Scotland. In order for the NHS to provide the best care for patients in our communities, the Scottish Government must take action now. People shouldn’t be expected to wait any longer.” 

Tracey Binnie, 40, lives in Tranent, East Lothian, with her husband Steve and 14-year-old child, Jay.

Just over a year ago, she was an active mum of one who thrived on a busy working life and enjoyed long walks with her two dogs.

Long Covid has turned Tracey’s life upside down and left her with a series of health conditions that mean she needs a half-hour rest after even the lightest of activity.

For the 40-year-old, Long Covid means constant fatigue, brain fog and muscle ache. She also has a lung condition for which she has to use an inhaler and is now on beta blockers after being diagnosed with PoTS – postural tachycardia syndrome, which is an abnormal increase in her heart rate after sitting up or standing.

Tracey’s working life has also changed beyond all recognition. She ran a successful pet-sitting business and worked in the Citizens’ Advice Bureau as a contractor but falling ill with Covid-19 in March 2020 stopped that completely.

Now she is working part-time as a community involvement coordinator with Chest Heart and Stroke Scotland to support people living with Long Covid - putting her personal experience into her work in facilitating a new peer support group as part of the charity’s Long Covid Support Service. Her new part-time role with CHSS allows her to manage her condition and help others in the same situation.

Tracey, who is married to Steve and mum to 14-year-old Jay, says: “My life has completely changed. I used to be very active and outdoorsy person. Now I am pretty much housebound, and I rely on my family to do all the things I used to be able to do.

“I’ve had to adjust to big changes physically and mentally. But I’m fortunate that my GP has been very supportive. And the GP practice has done their very best to support me as well as they can with a novel condition created by a novel virus.

“Many other people with Long Covid are not as fortunate. And that’s why it’s so important that more education is done with the medical profession. People need help and support because they are often very unwell, yet their symptoms often aren’t taken seriously.”

If you are living with Long Covid and need advice and support, please call Chest Heart and Stroke Scotland’s Long Covid Advice Line on 0808 801 0899. You can also text NURSE to 66777 or email adviceline@chss.org.uk