ALLIANCE calls for lived experience to be at the heart of Long Covid care and support

The ALLIANCE has responded to the Scottish Government's Long Covid Service Paper, outlining key recommendations and priorities.

The ALLIANCE has responded to the Scottish Government’s ‘Long Covid Service’ paper (this link will take you away from our website). The paper sets out the key elements that underpin the Scottish Government’s approach to care support for people with Long Covid. These are:

1. Supported self management
2. Primary care and community based support
3. Rehabilitation support
4. Secondary care investigation and support

Since March 2020, people in Scotland have been experiencing new symptoms and conditions because of Long Covid, which is having a significant impact on their daily lives. Chest, Heart & Stroke Scotland (this link will take you away from our website) estimate that 62,000 people in Scotland are living with Long Covid, with around half of these people experiencing complex symptoms for over 12 months.

The publication of ‘Scotland’s Long Covid Service’, and the Long Covid Support Fund (this link will take you away from our website) are welcome developments. However, we believe that there is further work to do to improve support for people with Long Covid. It is imperative that we adopt a whole systems, person centred approach, which prioritises lived experience and the vital work of the third sector.

The ALLIANCE suggests that the following priorities should be at the heart of Scotland’s Long Covid Service:

• An equalities and human rights based approach should be explicitly embedded using practical tools such as the PANEL principles, the AAAQ Framework, and Equality and Human Rights Impact Assessments.
• Information, advice and support for people living with Long Covid should be publicly available in multiple formats, and relevant experts – including BSL and language interpreters – should be involved at the earliest opportunity to ensure communications and information provision is clear, accessible and inclusive for all.
• Third sector organisations should be valued and sustainably funded, as one of the key providers of support for people with Long Covid. The ALLIANCE suggests that additional funding could be distributed via our Self Management Fund.
• Holistic needs assessments, and a holistic care and support planning approach such as Scotland’s House of Care model should be adopted in primary care to ensure ongoing support for people living with Long Covid and enable supported self management.
• The role of the third sector should be explicitly acknowledged in rehabilitation pathways.
• The voices of lived experience should be prioritised, and improvement strategies should be co-designed with people who have (or have had) Long Covid and their unpaid carers.
• Health and social care staff at all levels should be trained in supported (not substitute) decisions making, what support and resources are available for people with Long Covid, and in human rights based approaches.
• Any research into Long Covid and its direct and indirect impacts on people should be informed by people’s lived experience, and should include intersectional analysis.

You can read the full response via the link below.

End of page.