Report: Improving support for people living with Long Covid
You feel alone and that there is no help. Even a diagnosis would mean that you felt like there was a reason for the way you were feeling.
Background
Long Covid, also known as Post Covid Syndrome, is defined by the National Institute for Health and Care Excellence (NICE) as “signs and symptoms that develop during or following an infection consistent with COVID19 which continue for more than 12 weeks and are not explained by an alternative diagnosis”. It usually presents with multiple overlapping symptoms, the most prominent ones being respiratory difficulties, generalised pain, fatigue, persistent fever, loss of taste and smell, PTSD, and cognitive and psychological problems.
It presents in many different ways, and it is hard to predict why some people suffer from it while others do not. It is also unclear how many people are likely to need support for Long Covid in Richmond and in the country.
As healthcare services set up support for Long Covid, it was clear to Healthwatch Richmond that the needs and voices of people suffering from Long Covid should be at the very centre of the design of services.
Recommendations
- Isolation and a need for better information was a strong finding in our analysis. We recommend the creation of a peer-led, clinician aided support group to help alleviate this.
- The relief that pacing, resting and other self-help methods provide was apparent in what people told us. We wish to see some development of self-help support, including in communications with GPs and online resources.
- Long Covid affects people’s lives far beyond their physical health. While the current screening processes address a wide range of symptoms, including mental health, we believe they should also address financial, social and domestic needs.
- Many people expressed that the need for a straightforward way to access timely comprehensive care that addresses their symptoms and wider needs is clear. The complexity of Long Covid makes for an inherent need for coordinated care.
The report provides data and insights which the Kingston and Richmond Post Covid Steering Group will be able to use to inform the ongoing development of local Long Covid Services. We look forward to continuing to work closely with Healthwatch Richmond in this area.
