Award-winning Long Covid support service extended

An innovative project to provide much-needed support to Long Covid patients has been extended to Midlothian.

Chest Heart & Stroke Scotland has worked with NHS Lothian, Pogo Digital Healthcare, patients and GPs to develop the individualised and easy-to-use Long Covid Pathway.

The pathway was piloted in Edinburgh in 2022, involving 36 GP practices and 173 patients, with plans to roll out across Edinburgh and the Lothians by the end of 2023.

GPs can refer patients directly into the pathway, which provides people with bespoke digital advice and also connects them to a CHSS nurse-led helpline and peer support.

The digital aspect of the service, the award-winning ‘MyTailoredTalks’, helps people manage their condition day-to-day while providing feedback to their GP to help with ongoing care.

Jane-Claire Judson, Chief Executive of Chest, Heart & Stroke Scotland, commented: “In Scotland, 94,000 people have been living with Long Covid for over a year. We know that people living with the condition feel scared, abandoned and left behind.

“Our Long Covid Support Pathway allows us to better support people living with the condition in Edinburgh and Lothian. Its success means we hope to see it rolled out across the country, helping more people with Long Covid to live their lives to the full.”

Professor Tim Walsh, Director of Innovation for NHS Lothian, said: “It’s been really important for us to bring together expertise from a range of organisations to better improve the support available for people with Long Covid.

“We know living with this can be really challenging and patients with Long Covid need support that can be individualised and available on demand, and we’re proud to have worked with our partners to have developed such support in Lothian.”

The Midlothian Health & Social Care Partnership Long Covid Project Team has welcomed the roll-out.. A spokesperson commented: “During the pilot phase, this pathway empowered people to make a successful transition after diagnosis towards self-management of Long Covid through effective and targeted self-management resources.

“GP practitioners in Midlothian are looking forward to utilising the pathway, which will remove travel barriers while still providing person-centered support and reducing demand on services. The combination of written, video and telephone support will provide people in Midlothian access to the most appropriate support for them.

“Importantly, support and self-management resources provided by MyTailoredTalks and CHSS are fed back to the referring GP without them needing to seek out this information. The pathway will enable people in Midlothian living with Long Covid to self-manage their symptoms and access up-to-date and validated information relevant to their needs.”

None of this would have been possible without NHS Lothian Charity, which has invested £120,000 in the platform so far.

Jane Ferguson, Director of NHS Lothian Charity, said: “As the official charity of NHS Lothian, we have a key role to play in supporting NHS Lothian to take forward innovative projects that help improve the health and wellbeing of communities.

“Thanks to generous donations to our COVID-19 appeal, we were able to provide initial funding for ‘MyTailoredTalks’ and are delighted to see this now being extended to Midlothian.

“This has been a great example of partners coming together from across the sector to put in place innovative solutions that support our communities dealing with the effects of Long Covid.”

Pogo Studio designed MyTailoredTalks, which recently won the Technology Enabled Independent Living Award at the Digital Health and Care Awards 2023.

Jack Francis, Managing Director of Pogo Studio, said: “This has been a fantastic, collaborative partnership to bring our expertise in technology to, and we have learnt hugely from working with NHS Lothian, Chest Heart & Stroke Scotland and people living with Long Covid.

“Long Covid continues to be a huge issue across Scotland and so we’re delighted that our work so far is demonstrating that MyTailoredTalks can help to support people in their recovery.”

MyTailoredTalks: new digital support for people living with Long Covid

An innovative pilot project to transform support for Long Covid patients in Scotland is underway to improve care for people living with the condition and dramatically relieve the pressure on GPs.

NHS Lothian has been working with Chest Heart & Stroke Scotland (CHSS) and Pogo Digital Healthcare to deliver a ground-breaking digital platform that brings primary care and third sector services seamlessly together for the first time.

The platform, called ‘MyTailoredTalks’, has been developed by Pogo Digital Healthcare and has been jointly funded by NHS Lothian, CHSS and the NHS Lothian Charity (formerly Edinburgh and Lothians Health Foundation) – with £120,000 invested in the platform so far.

It will allow GPs and other clinicians to refer patients automatically to the CHSS’s Long Covid support services and to provide tailored self-management information to patients.

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

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

Lothian-based GP Amy Small is living with Long Covid. She has been at the heart of developing the new system. She said: “As a GP and someone living with Long Covid this new digital system will 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.”

Health Secretary Humza Yousaf welcomed the project. He said: “Chest Heart & Stroke Scotland’s Long Covid support service not only supports people living with Long Covid, but also helps reduce some of the pressure on NHS services. That is why we have funded and continue to support Chest Heart and Stroke Scotland to deliver a Long Covid Support Service.

“I welcome this collaboration and investment. 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. We are spending £3m this year to support NHS boards like NHS Lothian to develop and deliver the best models of care appropriate for their local population’s needs.

“I look forward to seeing the full results of the pilot exercise and we are committed to working closely with Chest Heart & Stroke Scotland to share the learning generated from it to support the sustainability of our health services.” 

Professor Tim Walsh, Director of Innovation for NHS Lothian, said: “This project shows what can be achieved by the NHS, patients, charities and digital expertise working closely together to find innovative solutions.

 “The personalised ‘MyTailoredTalks’ 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.

 “We hope that these, together with the holistic support CHSS offer, will make a real difference to people living with Long Covid.”

Allan Cowie, interim chief executive at Chest Heart & 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.

“It not only makes this process easier for people living with Long Covid, but it helps to alleviate some of the pressure that primary care is under by allowing clinicians to easily refer their patients into a service they can trust.”

Greig Brown, 44, contracted Covid-19 in January 2021 and has been hospitalised twice because of the condition. 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 says: “This is my reality. I am so breathless and exhausted every day that simply getting downstairs and settled on the couch wipes me out.

“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.”

Sanjay Singh, Head of Funding Programmes with NHS Lothian Charity, said the pilot is a “great example of partners working together during the pandemic to achieve patient care that is personalised and, crucially, in response to Long Covid, as we learn more about this awful illness as time goes on.”

 “We were delighted to be involved in this innovative project and to be able to support through funding made available to support our communities dealing with the effects of Long Covid,” he said.

Jack Francis, chief executive and founder of Pogo Digital Healthcare, added: “Working in partnership with healthcare professionals, patients and technology experts to develop this innovative new healthcare pathway has resulted in a unique way for patients to manage their Long Covid symptoms.

“I am delighted with the pilot engagement so far from both the patient groups and Chest Heart & Stroke Scotland’s advice line team, and it has been great to be part of such an innovative new healthcare solution.”