
This is the first of three blogs written by one of our supporters Dr Jenny Ceolta-Smith (@JCeoltaSmith).
So, how and when did my Long Covid advocacy begin?
Back in 2020 I was working as an occupational therapy lecturer and researcher four days a week and had not long finished a temporary role working one day a week in the Jobcentre as an occupational health professional. So, in practice I was used to advocating for disabled people and health and safety at work. I wasn’t shy at calling out unsafe practice either. But in March 2020, things drastically changed for me health and work wise after contracting COVID 19 and then having Long Covid. On reflection I was ill prepared and equipped for my dive into Long Covid advocacy.
In this three part blog, which I started in August 2022, I reflect on becoming and being a Long Covid advocate. In part 1 I document and chart my advocacy journey shared with so many peers and allies. I write about our activism and how we formed and co-founded advocacy groups and co-produced our outputs.
In part 2 I reflect on the personal value, benefits, and rewards of advocacy and the drawbacks I have experienced. In part 3 I offer insights from my lived experience of advocating about keeping as well as possible.
Trying to synchronise our swimming: starting out with Long Covid Support and the employment group
A friend told me about the Long Covid Support Facebook peer support group around September-October 2020. Long Covid Support had an advocacy group on employment which fitted with my professional background in vocational rehabilitation, and research focused on the Department for Work and Pensions (DWP).
When I joined this group, we were all at various stages of being in work, returning to work, off sick from work or had exited work due to having Long Covid. Our peer support during these stressful times was so valuable. There was multidisciplinary expertise and passion in the group to improve things for people like us who were struggling to return to work and stay well at work.
In the early days it was a comfort to be part of that group, sharing our experiences and learning together especially when my paid job ended. We sought collaborations and allies for example with: The Society of Occupational Medicine (SOM) GMLaw, CIPD, TUC, , Chronic Illness Inclusion, The Vocational Rehabilitation Association (VRA) and The Royal College of Occupational Therapists ( RCOT ) and engaged in various projects with them over time. These projects included being part of the Society of Occupational Medicine Task force for Long Covid. Key SOM outputs, not all with my input, in links here and here We also submitted written and oral evidence for the Works and Pensions Select Committee (June 2021-April 2024) that I led on for Long Covid Support. These submissions were focused on employment support, plan for jobs and employment support , health assessments for benefits and disability employment. In addition to two Department for Work and Pensions’ consultations that I co-authored: Long Covid Support response to consultation 2021 Shaping Future Support the Health and Disability Green Paper. And Long Covid Support response to DWP for the Work Capability Assessment Consultation (2023)
At the end of 2021 our Long Covid Support employment group’s activities received a Special Recognition Award from the UK Vocational Rehabilitation Association. Five of this employment group co-founded Long Covid Work (LCW) with the aim of having a website for signposting stakeholders to resources and an aspiration to undertake paid consultancy and training work. Sadly, the collective work and training element did not come to fruition, and we are no longer active as that group or the Long Covid Support employment group.
Putting on additional Long Covid advocacy swimming caps
The arrival of Long Covid Physio was inspiring. After watching a podcast of a peer occupational therapist Helen Skiffington and Darren Brown (former Chair of Long Covid Physio) on Navigating Pacing , I contacted Darren with a podcast idea on ‘illness work’ . This idea became a reality: Season 1 Episode 16 Jasmine and Jenny: Return to work with Long Covid
In Dec 2020 I put out a call for any occupational therapists with Long Covid to do something collaboratively. A group of five occupational therapists formed (four from within the UK and one from the US). Through peer support we reflected on our lived experiences of Long Covid for the UK Royal College of Occupational Therapists’ (RCOT) monthly magazine: OT News piece in 2021 : Riding the waves of Long Covid together as occupational therapist peers (9:18-21 ).Three of us from that group along with another peer went on to co found Occupational Therapy for Long Covid (OTFORLC). During that time we supported RCOT for example, in sharing of our ideas for their survey for this report: Living with Long Covid Occupational Therapists’ experiences published in 2022.
In March 2023 after supporting another report ( first one here) by the TUC and Long Covid Support workers’ experiences of Long Covid I needed to step back from my ‘more formal advocacy roles’ from the Long Covid Support employment group, LCW and OTFORLC. But I had not given up on advocating, I just had to change tracks and take off some of my advocacy caps. More on why I decided to change tracks in part 2.
Find me when I’m there at: X formerly Twitter: @JCeoltaSmith and @WorkingWithLC @jceoltasmith.bsky.social
Acknowledgements and thanks to:
My advocacy peer and friend Dr Clare Rayner for reviewing an earlier draft of this blog. @dormousedoodles / @dormousediaries.bsky.social for the illustration of a group of people in the sea.
To all my peers with Long Covid who I have collaborated with since 2020, this includes so many people who have shared their experiences with me and given consent to draw on these for our advocacy. To our wonderful allies and especially our advocates within Long Covid charities and groups including Long Covid Support, Long Covid SOS, Long Covid Physio, ME Local Network, Supporting Healthcare Heroes UK, Long Covid Nurses and Midwives, Key Workers Petition UK, Chronic Illness Inclusion, Long Covid Kids, PossAbility: ME, Long COVID & Work. To those I have advocated closely since 2020: Clare Rayner, Polina Sparks, Kirsty Stanley, Lesley Macniven, Sophie Evans, Cathy Thomson, Karen Cook, Joanna Clynes, Helen Skiffington, Laura Maloney, Alison Twycross, Catherine Hale, Louise Beaton, Linda Hending, Leslie Cohen, Laura Witcomb, Rox Talbot, and Sue Birch. There are many more people who have been and continue to be part of my advocacy journey so please forgive me for not listing everyone here and some people prefer to stay behind the scenes.