Long COVID: How is your feedback making care better?

The NHS has announced a new plan and more money to improve support for long COVID. Find out how the experiences you shared helped make the difference.
Woman supporting another woman in a group setting

Last week, NHS England published a plan for how services will better support people with long COVID. They also committed a further £90m in care for people after they have had COVID.  

We analysed the stories people had shared with Healthwatch about long COVID throughout the pandemic; although small in number, they told a powerful story. 

In this article, we look at the concerns people with long COVID have told us about their care and how the NHS is acting to address them.

I have found, since having Covid, that the support is simply not there. Physically or financially.…My GP surgery have consistently told me they don't know what to do for me, which I understand, but you do tend to feel like you're on your own with this.
— Story shared with Healthwatch South Gloucestershire

Improving diagnosis 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.

In response to this issue, the NHS is improving long COVID resources for healthcare professionals to help them better diagnose symptoms and provide support.

Greater awareness of specialist services

Even if GPs acknowledged symptoms, people told us they were not always clear what support for Long Covid was available. Some GPs were unaware of the existence of Long Covid clinics. Others did not know how to refer people to these services.

To help tackle this problem, the NHS is investing in a new training programme to increase doctors' and nurses' knowledge of the tests, treatments and rehabilitation available for long COVID.

Improving holistic support 

As well as your physical health, long COVID can affect your mental health and cognitive abilities. However, people told us that support often focuses on helping with physical symptoms. 

In response to this evidence, the NHS will take several steps to improve how different services work together to review and support people's physical, psychological and cognitive issues.

Tackling unequal health outcomes

Some people told us they struggled to access support more than others. For example, individuals with pre-existing conditions said doctors didn't always consider how conditions, such as MS and chronic fatigue syndrome, affected long COVID. Some older women also said doctors used their age to dismiss their concerns.

The NHS has said they are committed to improving equity of access and are working to understand why some groups are underrepresented when it comes to using long COVID services. 

What's your story?

Do you have a story about long COVID support? If yes, we want to hear from you. 

Whether positive or negative, please share your experience and help us make NHS decision-makers aware of what needs to change. 

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You can help make health and care services better by sharing your experiences and ideas.

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