In 2022, we launched a pilot peer support program in partnership with Sirona care and health for people living with long COVID, a condition which can occur when symptoms of a COVID-19 infection remain longer than 12 weeks after the initial infection.
People living with long COVID can experience a long list of symptoms, most commonly breathlessness, fatigue, pains, brain fog (finding it difficult to focus or think), loss of taste and smell, anxiety, and depression. The condition remains new, and research is ongoing, but there are currently minimal medical treatments specifically designed to counteract long COVID symptoms.
For many people living with it, this can lead to anxiety, uncertainty, and isolation as symptoms can stop them from participating in the social and professional activities they are used to, and without a clear idea of whether this is a permanent or temporary situation for them.
Our peer support pilot was designed to facilitate a peer space where peole were supported to increase their knowledge, confidence, and ability to remain resilient while living with long COVID. It sought to offer opportunities to share their experience of their symptoms and the impact of them with others who have been through similar circumstances. This space was able to respond and react with true empathy and understanding of the obstacles and barriers they are facing.
Our Project
We trained volunteers with lived experience of long COVID to become peer facilitators. The training included communications techniques, group dynamics and management, personal and professional boundaries, safeguarding, and up to date information on COVID. this enabled the Peer Facilitators to provide facilitation and management of long COVID workshops and support groups to allow people opportunities to explore the condition, how it impacts them, and share coping strategies and management techniques to improve their experience of living with their symptoms.
Workshops
In our Long COVID workshops participants discussed their experiences of long COVID symptoms, explored the impact it’s having on their daily lives, and discover what kind of support and coping strategies are available. These sessions include a healthcare professional who provided participants with up-to-date information about living with long COVID.
Our Peer Facilitators provided the opportunity for participants to talk about their situation and the medical information alongside others going through similar circumstances. The aim of these workshops was to support increased knowledge, confidence, and ability to cope with living with long COVID.
Support Groups
In our support groups, participants were able to attend six support sessions over twelve weeks, with a maximum of ten participants per session. Each session focussed on a specific part of living with long COVID, including:
- Experiences of Long COVID and Expectations
- Thinking Ahead – Individual Aims & Directions
- Symptom Management
- Self-Advocacy – Talking to others about your long COVID
- Receiving Support and Creating Adjustments
- Final Reflections & Next Steps
Outcomes
Developing peer support in Long COVID
Following our successful peer support pilot in long COVID, we are now supporting other health and voluntary sector partners to implement this model into their services. If you are interested in discussing how you or your organisation might start peer support for long COVID in your area, please contact us at info@peerpartnership.org, or call our office on 01179555038.
If you are looking for support with Long COVID – please contact your GP or the Sirona Long COVID Clinic who will be able to signpost you to other support.
Please find below an online resource that you may also find helpful:
Hope Programme for Long COVID (South West) — Hope For The Community CIC (h4c.org.uk)
Meet our mentors
Sue
What’s your name?
I’m known as Sue or Susie, depending on which group I’m with!
What have been your experiences of Long COVID?
I caught COVID whilst teaching in November 2020 and ended up in hospital for a day when my blood oxygen levels dipped low, and I couldn’t even say my postcode in one breath. I’ve come a long way since then, and even though I now have Long COVID, I’m delighted to be a Long COVID Peer Mentor to help be part of the effort to support each other on what can otherwise be an isolating and frustrating journey.
What’s your favourite household item?
My favourite appliance is my soft, snuggly electric blanket which enables me to enjoy blissfully warm, heavenly rest; a wonderful antidote to Long COVID fatigue.
Catherine
Whats your name?
I’m Catherine, but everyone calls me Kate
Why did you become a peer mentor?
I’m living with Long COVID, and have previous experience of living with ME whilst having children. I volunteered for this because after doing a course through the ME service the best thing was connecting with others with Long COVID too. I wanted to give something back and use my own health experience for something positive. The best thing about the volunteer support groups is sharing the group experience and the highs and the lows as we go through the 6 week course and get to know each other. Trying to give support and understanding works both ways because I feel understood and less isolated too. It’s positive overall and I often come away with a big smile on my face!
What do you do to relax?
Favourite activities of the moment are knitting and watching wildlife videos ( at the same time, so the knitting goes wrong a lot). I also enjoying singing relaxing lullabies with the ENO Breathe programme, and hope to be able to sing with a real life choir again one day.
What’s your favourite household item?
I’ll say the microwave, for reheating all those half-drunk cups of tea that see me through the day.
Mila
What’s your name?
Hi! I’m Mila. I am a teacher and wellbeing coach. I love making a difference to our community in Bristol.
Why did you become a peer mentor?
I got COVID twice in 2020 and have been living with Long COVID ever since, and my life has changed dramatically. I became a Peer Facilitator at The Peer Partnership to help others in my situation which has been very rewarding. I’ve been able to work within a very understanding team and meet peers from different backgrounds.
What’s your favourite household item?
My favourite household appliance has to be my WiFi router, because I like to keep connected with others and to stream a good film!
Celine
What’s your name?
I’m Celine, I’m 36 years old and living a fast pace life of work and many other things in Bristol!
Why did you become a peer mentor?
I have Long COVID for now more than 2 and half years, and it took me years to find my way through my condition, and still feelings and struggles change daily! I have personally used the workshops and supports groups in this project and it allowed me to come to terms with parts of my Long COVID, like being able to acknowledge and name my disability. The group was also the first time I finally met real people with Long COVID, and created a safe space to talk about how our lives were turned upside down! When the opportunity to become a volunteer came, I thought it would be great continue to be part of this journey.
What do you like most about being peer facilitator?
Continue to meet people living with Long COVID and for us to explore that together, and a very important point, the team is exceptional and always so nice to work with them!
What’s your favourite household item?
Can I choose curtains for letting me sing in the kitchen without street seeing if not, my rice cooker, which is also a multi-cooker! And when I like it best is when my partner is on dishes duty!
