The Experience of Post-Covid-19

Healthwatch Redbridge, Havering, and Barking & Dagenham came together in collaboration with the North East London Foundation Trust (NELFT) Long Covid Clinic, and North East London CCG to conduct this research. The goal was to hear and present the perspectives of local service user at key stages along the NICE clinical pathway for post-Covid-19 Syndrome, more commonly known as Long Covid.

The Healthwatch involved felt there was a need for patient insight because the reported symptoms vary greatly, as a new clinical area there are uncertainties in treatment pathways, routes of access to support are not well evaluated, and there are potential demographic factors affecting uptake of support and equality of access.

The report is based on the findings from a survey with 169 responses, ten in-depth interviews with local service users who identify as experience Long Covid, four interviews with local GPs, and a focus group with service leaders. The research was carried out during March to June 2022. The research found the following.

• A clear majority of respondents have tested positive for Covid-19, with just under half being diagnosed with Long Covid.
• 93% feel their enjoyment of life has been impacted, with 76% finding it more difficult to undertake hobbies.
• Half of respondents say their ability to work has been affected.
• Respondents are almost twice as likely to seek self-help than consult with their GP.
• Just over half of respondents feel that hospital and community based services have not been helpful, with a similar number feeling the same about primary care services.

Responses from Bangladeshi, Pakistani, Black African, and Caribbean backgrounds were relatively few. However, those responses that were received show respondents from these communities identifying a great effect on their day to day lives. These respondents were particularly more likely to say their ability to work or care for others has been negatively impacted.

The report makes four recommendations.

1. Continue to simplify primary care referral structures and improve education of staff within primary care about the condition itself and available resources.
2. Peer-led support groups with clinician oversight.
3. Increase in promotion of the Long Covid service in social media communications.
4. Further research across North East London to replicate this project.