A new study looking into the management of long Covid has opened in Wales.

The Long Covid Personalised Self-management support co-design and Evaluation (LISTEN) study will evaluate the effectiveness of a new self-management support programme, co-designed by people living with long Covid.

Participants will be randomly selected into two groups, one receiving the LISTEN support package, which will involve co-designed book and digital resources and up to six, one-to-one video or telephone call support sessions with Listen trained healthcare practitioners, with the other group receiving their usual care which could include physiotherapy or group sessions.

The study is open to anyone over 18 who has been experiencing long Covid symptoms for 12 weeks or more. People taking part in the study don’t need to have had a positive COVID-19 test but must have experienced one or more of the symptoms consistent with COVID-19, including ongoing fatigue, breathlessness, chest pain, “brain fog” or muscle pain.

This new support package was co-designed by a research team and 30 people from across the UK living with long Covid, who provided their experiences, preferences and challenges of living with the condition.

A great source of support and encouragement

One of the people who helped design this package was Rob Moffitt, 73 from Abergavenny. He has been involved in the design of the study over the past nine months. He said:

“My life has definitely changed as a result of having Covid. When I walk the dogs, I used to walk them for about half an hour, morning and evening, for about three quarters of a mile. Now I walk for 20 minutes just once a day, and we get about 400 yards. It's all about budgeting what little energy I have on a bad day.

My condition goes up and down. When I have a bad cycle, I can be again extremely breathless. I don’t have the energy for anything. I have to contend with muscle and joint aches and pains and long periods of brain fog. I used to love to build and fly model aeroplanes, and gardening. I can't do as much of the things I used to do now, sometimes nothing at all for weeks on end.

I was reading other people's stories, compared to mine they are absolutely horrendous, I have got off relatively lightly. I can see that a lot of the things that are happening to me are slowly resolving. but many other people found it frightening. When I learned about the study, I thought I would just like to try and get something positive out of it, help somebody else.

I was one of the people interviewed to provide details of how I dealt with it and what’s happened to me. And to show that there are often ways around the problems.

In the resources provided, all the stories and information are from people like me who are living with long Covid. It is a great source of support and encouragement. The LISTEN team is very good at listening to us. I felt heard, understood and taken seriously.”

 Joint lead researcher on the LISTEN study, Professor Monica Busse, Director for Mind, Brain and Neuroscience Trials at Cardiff University’s Centre for Trials Research, said: 

“We know there are approximately 83,000 people in Wales struggling with the effects of long Covid and the LISTEN project has done just that, listen to those living with long Covid to design a support package.

Long Covid has had an incredible impact on people’s lives and while this package is not designed to cure symptoms of long Covid, it can help manage everyday life, increase knowledge, confidence, and skills, to bring back some normality.”

Dr Nicola Williams, National Director of Support & Delivery at Health and Care Research Wales, said:

“This is a study which can be conducted at home, with a dedicated focus to tackle the longer-term health challenges of COVID-19. The beauty of this trial is that it is conducted remotely so anyone across Wales could have access to this support package whether its rural Powys, Cardiff city centre or on Anglesey.

 We are proud to see researchers from Wales at the heart of this UK study as well as practitioners delivering this package, helping those living with long Covid in Wales.”

Funded by the National Institute for Health and Care Research (NIHR), the LISTEN study has been set up by Cardiff University and Kingston University London in collaboration with Prime Centre Wales, Swansea University, Bridges Self-Management, Kings College London and Lincoln University.

Wales COVID-19 Evidence Centre, created by Health and Care Research Wales on behalf of Welsh Government, has also contributed to the LISTEN study working in collaboration with project leads to collate research evidence in Wales.

The LISTEN study is now open for recruitment. To take part in the study, visit www.listentrial.co.uk