Experiences of Long Covid

Healthwatch in Sussex wanted to understand people’s experiences of long Covid and establish how effective support was for this condition.  They ran a survey between August and September 2022 to which 94 people responded.

They heard that long COVID symptoms varied widely, and most respondents reported experiencing more than one symptom. The most common long COVID symptoms people experienced were fatigue/extreme tiredness, brain fog and muscle/joint pain. Fatigue/extreme tiredness was the most common severe impact of long COVID, making it difficult or impossible to do normal activities.

Whilst over two in five respondents experienced improvements in their long COVID symptoms, for nearly a quarter they had got worse. Long COVID impacted on the mental health of four out of five respondents, with a third of them reporting a severe impact. The most common effects were low mood, anxiety and insomnia. Some experienced depression.

Nearly half of respondents reported a severe impact on their quality of life as a result of long COVID symptoms. The most common negative impacts were on physical wellbeing, stopping people doing things they enjoyed and undertaking key household tasks.

The long COVID support rated as most helpful were self-help, websites, GPs and the PCASS service. Those rated as least helpful were GPs, Hospital specialists and self-help/websites. Awareness of the PCASS service is relatively low, with only a third of all survey respondents being aware of its existence. Of those seeking to use/using the PCASS service, 81.5% rated it as very helpful/helpful, but only 50% identified that it improved their quality of life.

Challenges with obtaining referrals to PCASS were identified as:

• a lack understanding of COVID symptoms and pathways for support
• limited awareness of long COVID and PCASS amongst healthcare professionals
• challenges in accessing timely appointments to primary care and onward referrals
• delays in diagnostics and tests which may hinder long COVID diagnosis

The long COVID symptoms of PCASS services users improved at a greater rate than those for non-PCASS users (50% vs 40%), although a higher proportion indicated that they got slightly/much worse (32% vs 19%). Nearly half were dissatisfied or very dissatisfied with local long COVID support in Sussex. Only 10% were satisfied or very satisfied.

The three most identified forms of long COVID support people wanted to see were a dedicated long COVID clinic (65%), improved information for health professionals (53%) and improved information for the public (44%).