Lothian pilot scheme is breakthrough in Long Covid support in Scotland

A Long Covid sufferer who is left exhausted after walking from one room in his home to another is hoping a new pilot project launched in Lothian will make it easier for people with the condition to get help.

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For the first time in Scotland, GPs can now refer sufferers directly to a support service run by Chest Heart and Stroke Scotland (CHSS) which is dedicated to assist people in managing Long Covid and living well at home. The charity said the scheme would improve care for people living with the condition and dramatically relieve the pressure on GPs.

Greig Brown, 44, who contracted Covid-19 in January 2021 and has been hospitalised twice because of the condition, said he hoped the service will help people like him who “have fallen through the cracks”.

Once a keen runner and cyclist, Greig now lives with the symptoms of Long Covid, suffering from severe breathing difficulties and memory loss.

He has not been able to return to his job as a joiner at St John’s Hospital in Livingston, and he fears he will never regain the health and fitness he once had.

Greig lives in Armadale, West Lothian, with his partner, Sam. Their plans to marry are up in the air as they have had to use their savings while Greig has been off long-term sick.

He said: “This is my reality. I am so breathless and exhausted every day that simply getting downstairs and settled on the couch wipes me out.

Greig Brown fears Long Covid could mean he never regains the health and fitness he once had.

“I used to walk miles every day around the hospital, carrying tools and anything else I needed. Now I can’t even walk to the kitchen without needing to sit down.

“My GPs kept telling me Long Covid is all new to them, too, and they don’t know how to treat it. I feel as if people like me have fallen through the cracks. I hope having a system in place like this NHS Lothian pilot that lets doctors refer patients directly to the CHSS support service can make a real difference to everyone living with Long Covid symptoms.”

More than 70 patients are taking part in the pilot across 26 GP practices in the region.

And the team behind the project is appealing for partners to expand the ground-breaking initiative beyond Lothian so that everyone with Long Covid in Scotland can get better access to support.

Lothian GP Amy Small suffers from Long Covid and helped develop the pilot scheme.

The scheme uses a digital platform which brings primary care and third sector services seamlessly together for the first time. Called MyTailoredTalks, it has been developed by Pogo Digital Healthcare and is jointly funded by NHS Lothian, CHSS and the NHS Lothian Charity, with £120,000 invested so far.

It means that when a GP diagnoses a patient with Long Covid, as well as referring them for appropriate NHS-provided tests and treatments, the GP can also refer them directly to CHSS’s Long Covid Support Service and they can be given a pack of tailored self-management information.

Allan Cowie, interim chief executive at Chest Heart and Stroke Scotland, said: “For the past two years we’ve been campaigning alongside people living with Long Covid to ensure that systems are in place to help them easily access the care and support they desperately need.“This system has the potential to transform access to wraparound care through GP services. It has been developed with clinicians and people with Long Covid and we want it to be adopted right across the country as soon as possible.”

Lothian-based GP Amy Small, who is living with Long Covid and helped develop the new system, said it would be hugely beneficial to patients and primary care.“It’s a big breakthrough in integrated care. It gives patients direct access to support to help manage their condition. GPs will also now be able to seamlessly refer their patients through to the charity’s Long Covid Support Service which provides one-to-one support and advice from experienced advisors who can provide more time to the patients than GPs can.”

Professor Tim Walsh, director of innovation for NHS Lothian, said the scheme showed what could be achieved by the NHS, patients, charities and digital expertise working together. “The personalised ‘tailored talks’ have been designed to provide trusted ‘bite sized’ information for patients to access whenever they need to and be able to share with family or friends.”

And the initiative was welcomed by Health Secretary Humza Yousaf. He said: "This kind of digital innovation is just one example of the flexible way in which our NHS boards across Scotland are adapting to meet the needs of people with Long Covid.”