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Information for people with Long-Covid

Long-Covid is the name given to a condition that can last many months after someone has Covid-19.

What is Long-Covid?

Long-Covid is the name given to a condition that can last many months after someone has Covid-19. People may have a mixture of symptoms that vary day to day. Most people with Long-Covid can feel very tired, have “brain fog”, feel breathless or low and anxious. Other symptoms can include lack of appetite, aches and pains and others.

What help can I get for Long-Covid?

NHS can help you with the symptoms of Long-Covid and get better. We combine treatments into a special programme to help you with your symptoms using an App. This App helps you work with a nurse or physiotherapist to ease those symptoms, track your progress and lets you ask questions and send messages.

What is the Living With Covid Recovery Programme?

The programme called the – Living With Covid Recovery Programme - has several parts. The App part is used by you to get better and measure your progress. As well as your App, your nurse or physiotherapist uses a computer ‘dashboard’ to track your health and progress, to message you, and adapt your care to fit you. Lastly, there is a wider NHS team that touch base with you if you need it. This care team ‘map’ sets out who will look after you and how the NHS will do it.

How do I get to use it?

So, if you think you have Long-Covid, talk to your doctor. They can put you in touch with a Long-Covid clinic. Someone there will go through some questions about you and how you feel. They can then put you onto the Living With Covid Recovery Programme - if they are sure it’s right for you and your symptoms. Then an NHS physiotherapist (or nurse) will help you create your recovery plan and show you how to use the App. They will keep in touch with you, help you with exercise and treatments and support you.

Dominic, Long-Covid patient

"My main problem is not fatigue or breathlessness, it’s pain and tingling in my legs and feet. I felt like I was getting better for a month or two after having Covid-19 - I started going for long walks and it felt fine. But then I got worse and for about six months I'd get pain and dizziness if I went more than a few hundred meters. Often I could only manage going up and down the hallway.

Once I got on the app, my physiotherapist could see how I was doing from my questionnaires on the app. It was really encouraging, knowing she’s there. She reminded me to try the physical activity on the app.

The activities in the app, especially with the warm-ups before and the stretches after, have been really helpful. I was able to do more than I thought I would be able to, and that’s really helped with my symptoms. The pain has gone down and I can get about more easily."

While this is a positive step in beginning to better support people living with Long Covid, it is important to acknowledge that there is much we don’t know and that further research is needed to develop new treatments long-term. The team are continuously learning and listening to patients in order to ensure the recovery programme is as effective and supportive as possible.

Sophie, Long-Covid patient

Sophie, patient using the app

"Five months after having Covid, I was still feeling very breathless and easily tired - even walks could frustratingly leave me coughing and wheezing. I started using the Living With Covid Recovery App in August 2020 and have found it very helpful in tracking my progress and building up my activity levels. 

One of the most important aspects for me is the connection to support and advice from my own physiotherapist through the app, which has helped reassure me and feel that I'm not alone." 

Screenshot of what the app looks like for patients

Can I download the essential information? 

 

 

Patient involvement at the heart

Patients have been involved and consulted throughout the development of the programme, to ensure that it provides the support they need.

A UCLPartners blog interviews the team and explores how public involvement sat at the heart of the programme - ensuring that the work focused on the symptoms that mattered most to patients and that the digital solution was useable for all. 

"Most of the people working on this project are very senior medical professionals. But over and over again in meetings, the question would come back to the patient representatives present: 'What is important to you here?'" Julia Bindman, PPI representative 

Read the blog in full on UCLPartners website.