From 2021 to 2024, Keeping Well ran a series of peer support groups specifically designed for staff impacted by Long Covid. The purpose of the Long Covid peer support groups was to create a safe, respectful virtual space where staff with Long Covid could connect with one another and have an experience of belonging whilst offering and receiving support.
Details of the groups and findings:
From September 2021 to January 2024 the Keeping Well Service facilitated 18 peer support groups with a total attendance of 462 people. Participants were NHS staff from a range of clinical and non-clinical backgrounds across NWL NHS Trusts. The initial groups were held monthly and open to new or returning members, however, overtime to manage the increasing number of attendees, the group moved to a new format of closed groups, meeting fortnightly for four months with a maximum number of attendees.
While no recording of the groups took place, the facilitator noted significant themes from the discussions (with participants consent). These included:
- Seeking and giving validation of symptoms
- Management of symptoms
- Advice around accessing healthcare and support
- Challenges accessing healthcare
- Relationships: feeling misunderstood by others and not believed
- Feeling isolated and lonely
- Loss of identity
- Managing mental health
- Lack of support and understanding by managers
- The importance of holding onto hope
Participant feedback:
After completion of the group participants took part in a feedback survey. Findings from the survey indicated overall improvements in symptom understanding and management, relational experience and overall wellbeing.
Symptom management
- 93% of participants said they had a better understanding of their symptoms
- 66% said they had a better understanding of resources to help their symptoms
- 60% said that they felt supported in their ability to manage Long Covid symptoms at work
Relational experience
- 100% said they felt less alone with their experience of long Covid
- 100% said they felt able to express themselves freely
- 100% said they felt safe from discrimination and how they were included in the group
Overall wellbeing
- 86% said that they felt better about themselves
- 73% said they felt better able to deal with their problems
- 100% said they felt supported in managing difficult emotions
Examples of some feedback:
‘’I didn't feel alone anymore. I could unload and bounce ideas off people who knew what I was going through from their own experiences.’’
“The format was perfect. I especially liked it being online as I am nearly certain that I would not have taken extra time out to travel to a venue.”
“The group was fabulous….it was great to have the same people in the group each time and we have developed a great bond and friendship. I wish the group could have gone on longer as it was structured well with a great facilitator and I am worried what will happen now the group has finished, although the members are trying to set up our own group which I hope will be just as good and supportive.”
“The facilitator was so kind and compassionate and helpful. I am so grateful for her help and support. It has not been an easy journey and it's not over and the Keeping Well group has been so supportive and available. I think I would have felt lost without it. It has given me strength to keep fighting or to learn when I had to stop fighting and start accepting that my life has changed but still keep going as best as I can. It's an ongoing process.”
“Thank you so very much. This group without doubt improved my recovery. I cannot thank you all enough. Lifechanging!”
Discussion:
The findings from the Keeping Well Long Covid peer support groups demonstrate positive outcomes in terms of symptom understanding and management, relational experience as well as overall wellbeing. These findings are consistent with research that outlines how peer support spaces can have a positive impact for people experiencing Long Covid (Ladds et al 2021) and other long term health conditions (Mullard et.al 2023).
There are, of course, some limitations to these findings. The groups reflect the views of only a small sample of staff and did not include any standardised outcomes measures.
Despite these limitations, the findings provide insight into the potential benefits that peer support groups can offer NHS staff living with Long Covid or long-term health conditions.
At this current time the number of staff referring to the Keeping Well service describing difficulties with Long Covid is declining. This may reflect prevalence, although with the changes in testing protocols for Covid-19 it is not clear to what extent NHS staff in NWL might be experiencing difficulties with Long Covid. To better understand the needs of NWL Healthcare staff, it is our view that a NWL wide review of occupational health and covid clinic data could be useful in determining what the support needs of staff may be and whether there is a role for further peer support groups.
References:
Ladds et. al., 2021. E. Ladds, A. Rushforth, S. Wieringa, S. Taylor, C. Rayner, L. Husain, T, Greenhalgh. Developing Services for Long-Covid: Lessons from a study of wounded healers. Clin Med 2021, Jan 21 (1): 59-65.
Mullard et. Al., 2023. J.C. Mullard, J. Kawalek, A. Parkin, C. Rayner, G. Mir, M. Sivan, T. Greenhalgh. Towards Evidence-Based and Inclusive Models of Peer Support for Long Covid: A Hermeneutic Systematic Review. Social Science & Medicine (2023), Article 115669