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Currently, an estimated 119,000 people in Scotland are living with Long Covid, a complex and new condition which affects people in many different ways. Worryingly, around half of these people have had symptoms for over 12 months.
No one should be left to struggle with Long Covid alone. We’re fighting for better care and services for people living with Long Covid – but we can’t do it alone.
Download the plan
In February 2021, Chest Heart & Stroke Scotland and the Scottish Government announced a joint funding package of £760,000 to establish a Long Covid Support Service. This was a vital first step towards creating a coordinated nationwide approach in caring for people with Long Covid.
We have been working hard to establish support for Long Covid patients – including our Long Covid Advice Line and peer support group – but now national action is needed to make sure people across Scotland get the support they desperately need.
There are several challenges to ensuring that everyone receives the right help. Together with our partners the Royal College of Occupational Therapists, the Chartered Society of Physiotherapists, and the Queen’s Nursing Institute Scotland this report sets out what needs to happen next.
Our Long Covid Action Plan sets out what needs to be done in 4 key areas in order to establish a coordinated, national care pathway for people living with the condition in Scotland.
There needs to be a system in place which enables easy referrals and ensures Long Covid patients are getting the support they need without delay. This would also save health professionals’ valuable time, and help to ensure that people don’t fall down any gaps in care.
Some health professionals are still not fully aware of the symptoms of Long Covid, the impact it has on peoples’ lives and the steps they should take to refer people for tests or investigations. Training needs to be made available for all clinicians, and they also need to be made aware of other services – such as the Chest Heart & Stroke Scotland Long Covid Support Service – which patients can be referred to.
People should be provided with a Care Plan when first diagnosed with Long Covid, helping them understand and mange their condition and access key support services. Central guidance for treatment of people with Long Covid should be developed for allied health professionals to establish minimum standards of care and consistency.
Because of the increased demands on health services right now, new Long Covid services will not become a reality without additional resources. A Long Covid Capacity Fund needs to be created for Health Boards to draw on, helping them to establish local Long Covid services.
Download the Long Covid Action Plan
Thousands of Scots across the country are living with the effects of Long Covid every day. It’s vital that they get the support they need right now.
Our Long Covid Action Plan aims to make sure people like Tracey and Mairead aren’t left to battle Long Covid alone.
“Thankfully we are seeing greater awareness of Long Covid, and Chest Heart & Stroke Scotland is doing so much of the hard work there.”
Tracey, 40, lives in Tranent, East Lothian. In early 2020, she was an active mum of one who thrived on a busy working life and enjoyed long walk with her two dogs.
Today Tracey is living with Long Covid and a series of debilitating health conditions. Unable to return to work, Tracey is now the part-time Community Involvement Co-ordinator (Long Covid) with Chest Heart & Stroke Scotland, using her own experience of the condition to help others.
She says: “My life has completely changed. I used to be very active. Now I am pretty much housebound, and I rely on my family for so much.
“I’ve had to adjust to big changes physically and mentally. But I’m fortunate that my GP has been very supportive.
“I have constant fatigue, brain fog and muscle ache. I also need an inhaler for a lung condition, and I’m now on beta blockers because I have PoTS (postural tachycardia syndrome), which means my heart rate increases abnormally when I sit or stand up.
“Those of us with Long Covid need a single place to go to for information and for help because we’re only helping each other at the moment.”
Mairead Johnson, 58, lives in Greenock with her husband, Henry. Both are now suffering the effects of Long Covid, having contracted Covid-19 in December 2020.
She says joining the Chest Heart & Stroke Scotland Long Covid support group has helped her and her husband identify some of the symptoms of the condition and says more needs to be done to help sufferers recognise the different symptoms.
Mairead, who has chronic kidney disease, says: “A month after we got Covid-19, we were both still floored by it. I’ve had flu, but this wasn’t flu. We just lay for hours on end.
“I have joint pain in my foot. My hands and feet get very red, and the veins get prominent. I also am breathless and my heart has been constantly racing from the very start of covid.
“I’ve got a Fitbit. One day I was on the couch for hours and my heart was racing. According to the Fitbit, I’d done five hours and 23 minutes of cardio exercise – but I never moved at all!
If you, or someone you know, is living with Long Covid, we’re here to help. Call our Long Covid Advice Line for advice about how to manage your condition, and information about the services and support available – including our Long Covid peer support group.
Call 0808 801 0899 for free, confidential advice, or visit our Long Covid page to find our more about the condition.