Research report: Accessing social support for Long Covid

The ALLIANCE and CHSS have published a research report by E. Miller into people's experiences accessing social support for Long Covid.

In January 2022, the ALLIANCE and CHSS published a call for participants for a new research project, carried out by Dr Emma Miller, into people’s experiences accessing social support for Long Covid in Scotland.

The project aimed to build understanding of the life circumstances of people with Long Covid in Scotland, as well as their experiences of accessing social support.

The completed report makes recommendations for development of support based on people’s lived experience, and is available here.

The report makes the following key recommendations:

1. All stakeholders, especially medical professionals, should take a considered and empathetic approach when assessing whether someone may have Long Covid, even though their symptoms may fluctuate or individuals may not have had access to testing when they first became ill. It is essential that people (of all ages) are believed when reporting the symptoms of Long Covid.
2. The Scottish Government should run a national Long Covid communications campaign to educate the public about Long Covid and the effect it can have on people, and highlight key resources and supports.
3. The Scottish Government, Health and Social Care Partnerships and local authorities should invest in and facilitate training for health, social care, education, and social security professionals to support understanding of Long Covid and its implications so that people are effectively supported. This training should take a trauma-informed approach.
4. The Scottish Government should facilitate health, social care, education, and social security professionals at a national level to share examples of best practice in supporting people with Long Covid. This sharing of good practice should include direct input from people with lived experience of Long Covid.
5. The Scottish Government and Health and Social Care Partnerships should use a personal outcomes framework to understand the experiences people have been having so far, and the outcomes that are important to them.
6. The Scottish Government should provide support for people with Long Covid to understand the condition and how best to self manage. This includes understanding the need for a balance between cognitive and physical activities and about budgeting energy between them.
7. Health and Social Care Partnerships and local authorities should be able to signpost people with Long Covid to third sector and community-based organisations that provide information, advice and courses for self management on a flexible basis.
8. Social Security Scotland and the Department for Work and Pensions must adopt a person-centred and compassionate response to people with Long Covid.
9. The Scottish Government should review eligibility criteria for Adult Disability Payment and Child Disability Payment to ensure they are appropriate for people living with Long Covid and other fluctuating conditions.
10. Employers should follow CIPD guidance and work in partnership with the individual to make reasonable adjustments and to adopt a flexible approach to phased return. This may include non-consecutive days for phased return and trialling a range of reasonable adjustments.
11. The Scottish Government and Health and Social Care Partnerships should explore the provision of hubs or one stop shops to help plan and co-ordinate support for people living with Long Covid. This is particularly important for people who need to conserve limited energy when seeking support.
12. Actions to improve support for people with Long Covid should also be designed to benefit people living with other fluctuating long term conditions and invisible disabilities (e.g. people living with ME/CFS).
13. Health and Social Care Partnerships and local authorities should ensure tailored support, advice and guidance is provided for family members adjusting to new caring roles supporting people with Long Covid, including young carers. Research with Long Covid carers and people with lived experience must inform this support.
14. The Scottish Government should provide sustainable financial support for a range of Long Covid support groups. Sustainable financial support would enable greater variety of support formats, to best suit the diverse needs of the Long Covid community. For example, this could include a blend of face to face, online and telephone communication options. Small peer support groups may be preferable for some people, given energy limitations and cognitive challenges.

Sincere thanks from the project team to everyone who has been involved in this research – your contributions are much appreciated. Thanks also to Emma Miller for carrying out the research.

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