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The story of Long Covid is the story of patients

Aleyah Babb-Benjamin

“As someone living with Long Covid…you want somebody to believe what you're going through.” - Davine Forde

  • Long Covid Project
  • COVID-19
  • Lived experience
  • Health inequalities

This sentiment continues to reverberate in the wake of our event, Long Covid Webinar Event: A community-focused response, which took place on Thursday 4 November 2021. As a sector, we often ask ourselves how one can transform such painful personal testimonies into powerful calls for change; this humbling and insightful event provided the opportunity and space to do so.

Last week, we were joined by Davine Forde (Manchester BME Network CIC), Claire Hastie (Long Covid Support), Michael MacLennan (covid:aid) and Sammie Mcfarland (Long Covid Kids) in an enlightening panel discussion, focusing on the depth and breadth of dedication within the Long Covid community space. We bore witness to the staggering collective achievements of those providing a voice for people living with Long Covid, and built the case for genuine co-production, collaboration & commitment. Greater awareness of Long Covid symptoms, being validated in one’s experiences, and providing practical support for those with the condition were just a few of the resounding messages which emerged from our rich discussion.

We were also joined by National Voices colleagues Rachel Matthews (Head of Experience) and Keymn Whervin (Lived Experience Associate), who spoke to the importance of getting people with lived experience in the room and at the heart of decision-making. Their focus on co-production [INTERNAL LINK] highlighted a fantastic opportunity to harness the resourcefulness within our communities by working with people throughout decision-making processes. Long Covid – as awful as it is – provides an opportunity to authentically embed lived experience and co-production at a strategic level, ensuring that underserved voices are heard and acted upon.

This sentiment speaks to our own Long Covid project at National Voices, which convenes 6 partner organisations who support communities at risk of exclusion. Earlier this year, after receiving funding from NHSE/I, we took on this work in a bid to cement our health inequity agenda. It is clear to see that social determinants such as income, housing and discrimination also affect the levels of support people receive for Long Covid. In collaborating with this unique coalition of partners, we are learning about the power of supporting each other and showing solidarity in the VCSE (Voluntary, Community and Social Enterprise) sector. We also recognise the importance of tailoring clinical and non-clinical services to support the needs of specific communities. These learnings feed into other work that National Voices has conducted around elective care principles, digital exclusion and more. It also echoed throughout last week’s event, and as we drew to a close on our discussions, the residual messages became clear.

We must:

  • Change government messaging to emphasise the severity of Long Covid (updating symptom lists, circulating recent data etc.)
  • Provide practical support for those living with Long Covid by building pathways that straddle formal clinical services and the community.
  • Invest in both prevention and cure of Long Covid.
  • Consider underserved voices throughout policy and research in this space (children, minority ethnic groups, linguistic minorities etc.)

What we must not forget, however, as we push forward with fearlessness and feeling, is to go gently whilst giving each other time to heal.

If you missed the live event, want to circulate it amongst colleagues, or enjoyed it so much that you would like to see it again, you can watch a recording via our YouTube channel here.


Aleyah Babb-Benjamin is Outreach and Insight Manager at National Voices.