75% of people living with Long Covid for more than a year say their symptoms are still impacting their daily lives

New estimates from the Office of National Statistics show that 57,000 people in Scotland have been living with Long Covid for more than 12 months, compared to 31,000 this time last year.

The condition is having a huge impact on people’s daily lives with 75% of people with Long Covid saying their symptoms affect their day-to-day activities.

The estimates show that in total 164,000 people are living with Long Covid (of any duration) in Scotland.

Long-term impact

At Chest Heart & Stroke Scotland, we support people living with the condition and are concerned about the long-term impact symptoms are having on people’s quality of life as Scots continue to struggle with debilitating effects every day.

We fear that unless urgent action is taken to make sure that a full range of services are in place which meet people’s medical needs and support them to manage their condition at home, the pressure on the NHS will continue to grow and people will be left feeling unsupported and struggling to find the help they need.

In June, in partnership with Pogo Digital Healthcare and NHS Lothian, we launched a pilot service in Lothian which integrates primary care and third sector services. For the first time, this digital platform enables GPs to refer patients directly into Chest Heart & Stroke Scotland’s Long Covid Support Service.

We want to see this approach adopted across the country and are appealing to the Scottish Government to work with us to make this a reality.

Allan Cowie, Interim Chief Executive at Chest Heart & Stroke Scotland, said:

“Tens of thousands of people in Scotland have been living with the effects of Long Covid for well over a year now and their daily lives are being hugely impacted by debilitating symptoms.

“People living with the condition tell us that Long Covid is affecting their ability to work, socialise with friends and family, exercise and even leave the house. On top of that they are still struggling to access the tests they need and support isn’t consistent. There needs to be a full wraparound package of care in place that caters to people’s medical needs and provides holistic support to help them live well with their condition.

“The pilot project that we developed with NHS Lothian and Pogo Digital Healthcare has allowed us to integrate our service with primary care so GPs can easily refer patients directly into our Long Covid Support Service. We want to adopt this approach across the country and we’re appealing to the Scottish Government to help make sure this happens quickly.”

Jayne Gemmell from Fife is still living with the debilitating effects of Long Covid, after contracting the virus back in March 2020.

Debilitating symptoms

Jayne Gemmell, 55, had no idea that Covid-19 would turn her world upside down in March 2020 – and that she would still be living with the consequences of the virus more than two years on.

Jayne is now living debilitating symptoms which include severe breathlessness and exhaustion.

A mother of three grown-up children, Jayne contracted Covid-19 in March 2020. Already living with underlying health issues, including ME and an autoimmune disorder, she now has Long Covid and has been supported by Chest Heart & Stroke Scotland’s Long Covid Service for the last year to manage her symptoms.

She says: “I’ve had excellent treatment from the NHS, and I know the organisation is up against it with funding. But one of the best things the NHS did was refer me to Chest Heart & Stroke Scotland for help and support.

“Being told ‘here’s an organisation that’s going to help you from here’ has been amazing. I’ve had some big wins that I don’t think I’d have had without CHSS. The help I’ve had has made such a difference – I can’t thank CHSS enough.”

Jayne was working in fraud investigation for a bank when she first fell ill as the pandemic took root in the UK in March 2020.

She says: “I’d been off sick for about a year, and I still couldn’t speak because of the breathlessness. I couldn’t possibly work because I needed to spend so much time in bed. I’d lost my ability to concentrate. At that point I couldn’t even read. There was no way I could go back to work, and I’m still too sick to work.”

She and husband Iain, a police officer specialising in road traffic investigations, then decided to move from the family home to a bungalow because Jayne could no longer manage the stairs.

Finding support

More than a year after she first fell ill, Jayne was referred to pulmonary rehabilitation physiotherapy, and that paved the way to her eventually being put in touch with the CHSS Advice Line with more targeted help and support.

“CHSS has been a blessing for me. Tracey, the occupational therapist from the Advice Line, was wonderful from the start, and the weekly call really helped me stop feeling quite so isolated.

“Then more good things came from that. I joined the charity’s online seated exercise group with Frances, and that has done so much for me. Frances has taught me how to manage my dizziness and how to keep my breathlessness at a manageable level. I can’t do very much at the group – I use inhalers a lot – but something is always better than nothing.

“Tracey also set me up with a Kindness Caller, a lady called Sandra who rings me every week and can empathise with my conditions. She has helped me work out the best way to arrange my day so I get the most out of it without being too tired.

“I’ve had amazing practical help from everyone at CHSS, but the social aspect of it all has been just as important to me.”

Jayne is also part of the CHSS Long Covid Support Group, which gives those living with the condition the opportunity to share their experiences and their knowledge. Despite the severity of her symptoms, she remains upbeat about her “big wins”.

If you are living with Long Covid and looking for advice and information, please contact Chest Heart & Stroke Scotland’s Long Covid Advice Line on 0808 801 0899 or email adviceline@chss.org.uk