Long Covid Support Report April 2023

Healthwatch Norfolk wanted to know what information, advice, and support is available to those living with Long COVID symptoms in Norfolk, as well as how aware people are of these resources. We know from other Healthwatch reports that there is a lack of information and support available for those living with Long COVID.

There are an estimated 2 million cases of Long COVID (symptoms persisting for more than 12 weeks) in the UK as of January 2023. The impact of the condition on people’s lives and well-being can negatively affect their health outcomes. It is important that there is support available to help people manage their symptoms and reduce
this impact.

We developed and shared a survey to gather public feedback on what information, advice, and support resources are available to those living with Long COVID symptoms in Norfolk. From this we were able to identify themes in the feedback around what is available, how useful it is, and what could be better to improve support.

We heard from 286 people who had experienced Long COVID symptoms in the last year.

We found that knowledge and information about Long COVID and the associated symptoms is lacking. Respondents felt that even some health care professionals are not fully aware or understanding of the range of symptoms.

Respondents shared that this made them concerned that they would not be taken seriously and be dismissed
by GPs. Updating and improving resources for both public and professionals would help in diagnosis of Long COVID and improve patient confidence in services, knowing that they would be getting the correct support for their symptoms.

There is a lack of awareness for the resources that are currently available, by both public and health care professionals. Many respondents told us that they were not aware of resources that we had highlighted in our survey including services that professionals should be signposting/referring patients to.

More awareness and signposting material, in multiple accessible formats, for what is available would be beneficial in helping patients find the most suitable support for them.

Finally, support needs to reflect the range of symptoms that are associated with Long COVID. Consulting with patients about what they find useful and what they need would help to improve the available resources and identify gaps in support. One example of what patients told us they would like is access to peer support so they can share their experiences and advice.

The main recommendations were:

For NCH&C with potential to work with Healthwatch Norfolk
1. Patient Feedback – Consult with patients on what resources and information is wanted and what needs improving.

For NHS England and Norfolk & Waveney ICB
2. Peer Support – Facilitate access to peer support. Identify sources of peer support and ensure patients are aware of these.

For NCH&C

3. Accessible Information and Signposting – Ensure information and advice resources are in multiple formats that meet accessibility needs and there is adequate signposting.

For Norfolk & Waveney ICB

4. Understanding Long COVID – Increase wider understanding of Long COVID and its symptoms and professionals are aware of the available resources.

5. Resources and Best Practice – Ensure that resources are kept up to date. Ensure resources, best practice, and support for diagnosis of Long COVID is shared with professionals.

I would like there to be some treatment given even if I am just a guinea pig. I would much rather try something than just accept that this is what I have.

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