What people told Healthwatch England about Long Covid

Following the emergence of the COVID-19 virus, a new condition known as Long Covid has emerged. Find out what people told Healthwatch England about their experiences of getting treatment for this new condition.
A man wearing a face covering and waiting at a bus stop

Healthwatch England looked at a sample of 122 people’s experiences, shared with them between September 2020 and March 2022, to explore what it is like for people seeking help with symptoms of Long Covid. Ten local Healthwatch also conducted dedicated research into this condition which contributed to the following finding

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 shared with us so far suggest that the goals outlined in NHS England’s Long Covid plan 2021/22 are not yet being achieved for everyone with Long Covid.

The plan aligns with the concerns which were shared with us, and emphasises the importance of continuous, holistic care and enhancing support for GP services.

But what we have heard indicates that the policy is not being implemented consistently, leading to failures to provide adequate support for patients with Long Covid.

Recommendations for updating 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?

Have you or a loved one had Long Covid? Help us improve services and the support available to people, by sharing your experiences with us today.

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