Opposition MSPs call for national roll out of ‘groundbreaking’ Long Covid Service as thousands of patients have nowhere to turn 24 November 2022 Opposition health spokespeople have united in a call to end the postcode lottery in treatment for the 180,000 Scots living with Long Covid, saying most Scots with the condition are not getting the help they need. In a joint letter to Health Secretary Humza Yousaf, Jackie Baillie MSP, Alex-Cole Hamilton MSP and Sandesh Gulhane MSP urged the Scottish Government to roll out a ground-breaking service, currently only on offer in Edinburgh and Midlothian, to patients across the country. Chest Heart & Stroke Scotland (CHSS) has worked with NHS Lothian and Pogo Digital Healthcare to create a digital platform called “My Tailored Talks” that brings primary care and third sector services seamlessly together for the first time. It allows GPs and other clinicians to refer patients directly to tailored self-management information and CHSS’s Long Covid support services. The charity says the system improves patient care and reduces pressure on GPs. The number of people living with Long Covid has doubled in a year and the MSPs say the government needs to do more to help them. It is simply not acceptable for so little support to be available, or for it be so inconsistent across the country. The letters states: “It is simply not acceptable for so little support to be available, or for it be so inconsistent across the country. We desperately need the Scottish Government to take more action and provide the services that people have been asking for two years. “We’re calling on the Scottish Government to support Chest Heart & Stroke Scotland to roll out the Long Covid Pathway across Scotland to make sure everyone with this condition has access to practical and emotional support, no matter where they live. The Scottish Government needs to take action to support people with Long Covid now.” Patients referred to the digital platform are prompted to answer a series of questions on their symptoms. Based on their responses, they are offered bespoke content through My Tailored Talks. Patients are then able to request a call back from the Chest, Heart and Stroke Scotland specialist Long Covid advice line. Information on what talks they’ve listened to and whether they’ve used the CHSS service is automatically fed back to their GP. The Scottish Government needs to take action to support people with Long Covid now. Mike Smith has been living with Long Covid since early 2020. He uses a CPAP machine at night. Patient feedback on the service has been positive. Mike Smith, 58, lives near Edinburgh with his wife Maureen. A father of two, he runs a firm doing fire safety risk assessments after retiring in 2019 from the Scottish Fire & Rescue Service. Mike contracted Covid-19 in early 2020 and has been living with the symptoms of Long Covid ever since. Life has become a daily struggle and some days are less of a struggle than others. “My joints are constantly sore, and I have brain fog, which means doing my job is hard. I have a lot of detailed reports to write and it’s a challenge. I have underlying asthma, and I use a CPAP machine at night. That helps with the brain fog because I’m sleeping better. “I had to take July and August off work this year because I had been struggling through and I simply couldn’t do it anymore. I should be able to do things, but I can’t. Life has become a daily struggle and some days are less of a struggle than others. That’s the best way to describe things. “I have been speaking to my GP regularly and about a year ago, I got an appointment and explained I couldn’t go on like this. He referred me on to Chest Heart & Stroke Scotland, and that has been such a help. The Tailored Talks have been really good. In a lot of ways, the talks are refreshing what I already knew, but it’s great to be reassured and try and follow what I know are the methods to undertake.” Through the service, Mike was also referred onto a CHSS peer support group. He says: “I’m on the CHSS Long Covid Support Group, and I know from the discussions that I’m one of the lucky ones. I can still get out and about. One girl told us how she can’t even change her bed covers and sheets because she is so exhausted.” People’s lives turned upside down CHSS chief executive Jane-Claire Judson said: “Long Covid is a major public health issue and the Scottish Government needs to stop side-stepping the problem and instead face it square on. Many people’s lives have been turned upside down, they are struggling to work and live normal lives. People are scared and desperately need help and advice. “We need to see more innovation and joined up thinking within the NHS – and that’s exactly what our partnership with NHS Lothian and Pogo Digital Healthcare offers. It is an easy step to roll out the digital platform across the country and give every GP the opportunity to reduce the pressures they are experiencing and help their patients with Long Covid with a direct referral.” Jack Francis, managing director of Pogo Digital Healthcare, said: “At Pogo Digital Healthcare we have been working closely with our partners in CHSS and NHS Lothian, and people living with Long Covid, to design as patient-centred a platform as possible. “We know people with Long Covid experience a range of symptoms, so the My Tailored Talks digital platform is designed to offer patients information and advice about specific issues, such as fatigue, brain fog or breathlessness. Patients complete a simple self-assessment form, before being directed to information relevant to the symptoms they have reported. “We have listened to feedback from patients who used the system as part of the pilot project, and have developed several new features such as screen reader technology, video versions of the Tailored Talks, and accessibility tools for neurodiverse and visually impaired people. We are proud of the platform we have created, and hope it will go on to support many more people who are living with long covid.” If you are living with Long Covid and looking for advice and information, please contact our Long Covid Advice Line on 0808 801 0899 or email adviceline@chss.org.uk For more information, visit our Long Covid page.