People’s Experiences of long COVID in Sussex

We captured the views of 94 people, contributing additional insight that will support Healthwatch as well as local decision-makers and providers in understanding and responding to long COVID locally.

We wanted to know whether people are being offered support that meets their needs, both with health and the wider effects of long COVID, or whether they can find their own solutions. We also asked how people would like to be supported moving forwards.

Our report which we are publishing today highlights our findings and recommendations, together with a response from the NHS in Sussex (who funded the research) clarifying the range of steps being taken to support people with long COVID in Sussex, both now and moving forwards.

We heard:

• Long COVID symptoms vary widely, and many people experience more than one symptom. Fatigue/extreme tiredness was the most common severe impact, making it difficult or impossible to do normal activities.
• The mental health of four out of five of our respondents was affected by long COVID, with a third of these reporting a severe impact. The most common effects were low mood, anxiety and insomnia.
• Nearly half of the people we heard from (46.8%) reported a severe impact on their quality of life because of long COVID symptoms.
• The Post-COVID Assessment and Support Service (PCASS) delivered by the NHS in Sussex is viewed as helpful by a majority of those referred to it, but public and practitioner awareness of it needs to be raised, as does long COVID more generally.
• The three changes most respondents wanted to see were a dedicated long COVID clinic, improved information for health professionals and improved information for the public about long COVID.

Healthwatch in Sussex representatives commented:

“Long COVID is one of the many health and care legacies of the COVID-19 pandemic, and we have heard that the virus continues to affect people in a variety of ways, some very severely, long after their initial infection.

We support the NHS in Sussex in raising awareness of long COVID amongst the population and health practitioners, so that people are aware of the NHS and community support available and how to access them.

The complexity of long COVID makes it challenging to respond to, and feedback suggests that there is no one-size-fits-all response. Whilst the Post-COVID Assessment and Support Service (PCASS) is delivering benefits for many, further evolution of support may be beneficial across the whole Sussex health and care system, as well as by voluntary, community and peer-to-peer initiatives.“

Dr Dinesh Sinha, Chief Medical Officer for NHS Sussex, said:

“We understand the impact that long COVID is having on many people in Sussex and are working alongside East Sussex Healthcare NHS Trust and Sussex Community NHS Foundation Trust to develop and deliver the Post COVID Assessment and Support Service (PCASS).

Since opening in 2021, PCASS has provided care and rehabilitation for long COVID to more than 3,300 patients. The service has been continuously developing and is now able to offer initial assessments as well as a wide range of therapies to help patients with long COVID symptoms.

We welcome the findings of the Healthwatch report and are now working closely with our partners to further develop and raise awareness of the service.

We want to continue our progress and we will be working to further increase and develop peer-to-peer support by working with patients with lived experience of long COVID, as well as making sure everyone has access to this help and support across all of our communities.

We are also working on new digital solutions, including an app, to help patients with symptoms and access up-to-date personalised information.”

We would encourage anyone who has experienced COVID symptoms for longer than 4 weeks, to please contact your GP practice or visit our webpage for more information: Long COVID Support Service – Sussex Health and Care (ics.nhs.uk)

Our recommendations

Healthwatch in Sussex are calling for:

• Enhanced monitoring of the prevalence and nature of long COVID within the Sussex population to support NHS commissioners and providers in tailoring support to appropriate communities and socio-demographic groups.
• Ongoing awareness raising of the Post-COVID Assessment and Support Service (PCASS) offer amongst the public and health and care practitioners, especially in primary care.
• A ‘lay review’ of the public-facing information on the PCASS service should be undertaken to assess its quality, clarity and accessibility.
• Further exploration of the responses to long COVID, including peer support and self-help, especially at the local (Primary Care Network) level.
• A central repository of robust, accessible and appropriate information on long COVID, including to non-health related support and advice e.g. benefits, debt advice, employment etc.
• Exploration of the potential for a Public Health ‘deep dive’ into long COVID in Sussex with the goal of better understanding its symptoms and impacts at a local level and informing the provision of appropriate responses.

Healthwatch in Sussex will continue to work closely with the NHS in Sussex to follow up on our recommendations, monitor how residents are affected by long COVID and share the feedback we receive on the services they use.

Tell Us Your Experiences

If long COVID has affected you, then please share your experiences with your local Healthwatch via the contact details below. We want to hear your story.

Local Healthwatch can also support people with any health or care enquiry or feedback on any health or care services.

Healthwatch Brighton & Hove 
https://www.healthwatchbrightonandhove.co.uk/
Tel: 01273 234 040
Email: info@healthwatchbrightonandhove.co.uk 

Healthwatch East Sussex
https://www.healthwatcheastsussex.co.uk/
Tel: 0333 101 4007
Email: enquiries@healthwatcheastsussex.co.uk 

Healthwatch West Sussex
https://www.healthwatchwestsussex.co.uk/
Tel: 0300 012 0122
Email: helpdesk@healthwatchwestsussex.co.uk