This report sets out what we’ve heard about people’s experiences of long COVID and its impact on their lives, and includes case-studies illustrating the extent and nature of its effects on them.
It is the second of a two-part engagement exercise undertaken by Healthwatch in Sussex exploring the qualitative experiences of long COVID.
In March 2023, Healthwatch published its findings from the first-part, which were the results from a Sussex-wide public survey on people’s wider experiences of long COVID undertaken in late 2022.
During May 2023, Healthwatch interviewed 16 survey respondents who had participated in our long COVID survey.
Interviews focused on two main cohorts of people, those who have used the Post-COVID Assessment and Support Service (PCASS) (which supports those experiencing long COVID symptoms of four or more weeks duration) and those who had not.
Our focus was to hear about:
- Symptoms and impacts of long COVID on physical and mental wellbeing
- Ease of diagnosis with long COVID
- Effectiveness of any long COVID support accessed/used
- Experiences of referral and access to the PCASS service, and any differences it made to their long COVID symptoms/quality of life
- How they feel the service and/or support may be improved locally.
- Most people told us long COVID had a significant impact on their lives, including their physical and mental health, as well as affecting their day-to-day activities, jobs, quality of life and wider wellbeing.
- Some people experienced improvements in their health since developing long COVID, others learned to adapt and manage their symptoms, but overall many remained adversely affected, requiring ongoing medical or therapeutic support, as well as help from friends, family and carers with day-to-day living.
- Awareness and understanding of long COVID still appears relatively low amongst the general populace, employers, in statutory services, and remains variable between different health and care services and practitioners. This may lead to long COVID sufferers experiencing a lack of empathy, as well as inadequate support in dealing with the direct and indirect effects on their lives.
- A potential bottleneck remains in accessing support for long COVID [PCASS] due to the main route for long COVID referrals being through primary care, affecting the consistency of experience and uptake.
- The diverse range of physical and mental symptoms of long COVID, makes it challenging to deliver a single comprehensive response for any single organisation or service, and support needs to be joined-up.
The findings from our interviews, broadly align with those identified from our phase one long COVID survey, identifying similar themes around the diagnosis for, impacts of and responses to long COVID in Sussex.
As our interviews identified similar themes to our first-phase (survey) recommendations, we believe these continue to apply to our findings from this second phase, but wish to raise several areas where ongoing focused responses to long COVID may be valuable:
- Recognition of the need for a system-wide [Sussex Integrated Care System – ICS) response to long COVID, which supports increased awareness, rapid diagnosis and referral to PCASS and other appropriate services, tailored support and the provision of non-health related information and advice e.g. employment, debt, benefits.
- Increased promotional activity and communication to raise public awareness of long COVID symptoms, impacts and how to access NHS advice and support. This should include other public services, employers, schools, as well as advocacy, community and voluntary sector organisations.
- Continued awareness raising with primary care health practitioners of long COVID and the PCASS service offer and benefits to service users to support consistent diagnoses and reduced barriers to identification and referral.
- Ongoing development and adaptation of the PCASS service informed by regularly capturing and reviewing user and independent feedback and exploring best practice from long COVID responses in other areas.
- Continued sharing by Healthwatch of feedback on long COVID and experiences of the PCASS service with NHS Sussex to inform ongoing learning and service development.
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.
Support for long COVID
We 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)
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.