Experiences of Long Covid

Background:

Many people who had been ill with Covid-19 have been experiencing long-term effects and symptoms that have affected many aspects of their life. This is called Long Covid or Post-Covid Syndrome. Healthwatch Wandsworth wanted to understand what support is needed for people living with this condition or the long-term effects of another virus to inform decision makers about what people are experiencing and what further help may need to be put in place.

What we did:

Healthwatch Wandsworth launched an online survey to find out from people about their experiences with signs and symptoms lasting more than 12 weeks after an infection from a virus. Questions included in the survey covered topics such as the length, type, and strength of symptoms, as well as how they changed over time, how the symptoms affected people’s day-to-day life, as well as their mental health and wellbeing. They also asked respondents about the process of getting diagnosed and the support that was provided to them. The survey was open from 22nd of July 2021 to 15th September 2021 and 50 people took the time to share their experiences.

Findings and recommendations:

• Increased knowledge and awareness of long-term symptoms after COVID-19, amongst patients and health and care staff, as well as carers and the wider community.
• Development to support should include peer support, more support for managing symptoms and more treatment options.
• Provision of support/referrals should be available if COVID-19 status is not confirmed but based on the symptoms that need support. This may also reduce delays in access to support.
• The uncertainty about how long the symptoms will last and fluctuations in severity, as well as the negative impact of symptoms on a wide range of daily activities and mental health, suggests a need for more holistic support. Nearly three quarters of people said there had been an impact on their emotional wellbeing or mental health.