Living with Long Covid

Healthwatch Richmond upon Thames undertook a survey over the summer 2021 to gather information about the experiences of people suffering from Long Covid. They wanted to better understand the condition itself and the impact it has on people’s lives and mental health and people’s experiences of the support available for Long Covid, if they had received any. They received 93 responses.

The main symptoms experienced are fatigue, breathlessness, brain fog and anxiety. Non-linear recovery and significant fluctuations are characteristic of Long Covid and were widely represented in the data.

People’s symptoms appeared to improve over time, as people who first got ill before summer 2020 show significantly more improvement than people who got ill after September 2020.

 Long Covid impacts patients’ life, beyond their physiological symptoms. The overwhelming majority of our respondents reported that their mental health had deteriorated as a result of both the condition and its effects on their lives.

Beyond physical and mental health, people’s lives are impacted by Long Covid on a deeper level: their employment, caring duties, social lives and domestic duties become neglected following high levels of fatigue. In many cases, it is practically impossible for people to simply carry on with lives as normal.

Getting a Covid diagnosis had a limited effect on whether people had accessed support. Many felt they couldn’t get help from a GP due to concerns about the impact of the pandemic on the NHS.  There was a stark gender divide in access to a diagnosis – nearly three quarters of men had received one compared to just over a quarter of the women.

Two in five had to wait over two months for support after their first GP referral.  Some had to resort to private healthcare. People who received support reported improving more and worsening symptoms less frequently.

The report contains 4 recommendations about support; comprehensive screening and the co-ordination of care.