Your stories about Long Covid heard at a national level

Your voice has been heard in a new national report which details the experiences of people with Long Covid from across the country.
Long Covid

The report by Healthwatch England, brings together stories from 858 people, including people from Medway, who have had Long Covid.

Key findings:

  • GPs are unsure of the symptoms of Long Covid – people often felt that their GP did not understand Long Covid. We also heard that many felt their GPs dismissed their symptoms and their experiences were not listened to, making it difficult to access help and support.
  • GPs are unaware of what support is on offer or how to access it – even if GPs acknowledged symptoms, they were not always clear what support for Long Covid was available. Some people told us that it felt like their GP simply didn’t know what to do with them. Some GPs were unaware of the existence of Long Covid clinics. We also heard that GPs did not know how to refer people to a Long Covid clinic.
  • People have mixed experiences of Long Covid support – we heard that people are waiting months for appointments at Long Covid clinics. People’s opinions are mixed, with some people finding the clinics not very helpful and others who said they helped them cope with their symptoms.  
  • Long Covid can affect every aspect of life, but patients are not being offered holistic support - when people could access support, it mainly focused on physical symptoms, despite Long Covid also affecting people’s mental health and cognitive abilities.
  • Some people struggled to access support more than others – people with pre-existing conditions told us that doctors often didn’t consider how conditions such as MS and chronic fatigue syndrome affected Long Covid. We also heard from many older women who felt that doctors used their age to dismiss their concerns

As a result of these issues, people are often left to manage their symptoms themselves and may be unsure of what support is available.

What does this tell us?

The stories from around the country, echo with what we heard in Medway. People particularly talked to us about the impact Long Covid has had on every aspect of their life and the affect it has had on their mental health and relationships.

The feedback from across England suggests that the goals outlined in NHS England’s Long Covid plan 2021/22 are not yet being achieved for everyone with Long Covid. This is leading to failures to provide adequate support for patients with Long Covid.

What do we want to see change?

Together with Healthwatch England, we are calling for an update to the Long Covid Plan to improve services for people:

  • Ensure that GPs understand the variable symptoms of Long Covid and take all concerns seriously
  • Ensure that GPs understand the available support and how to refer people to it
  • Ensure that support is truly holistic and people with non-traditional symptoms are offered appropriate care
  • Consider how to ensure people with Long Covid have help with daily living tasks
  • Consider how to ensure people with other chronic conditions are not overlooked and that services have adequate resources to cope with people with Long Covid and other conditions
  • Consider how to ensure holistic support is co-ordinated across services, including data sharing and referrals across services
  • Understand more about the experiences of women, especially older women, when trying to get help from their GP

Have you had Long Covid?

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Download the full report from Healthwatch England to read what else they heard.

You can also read the stories that we heard in Medway below too.

Healthwatch England report on Long Covid

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