Energy Limiting Conditions: A legacy of co-production, partnership and hope

A pioneering Lincolnshire programme that began as a response to Long Covid has created a lasting legacy that continues to support people living with a wide range of Energy Limiting Conditions across the county.

Funded through NHS Charities Together, the project started in 2021 when partners from It's All About People, health, social care, local government, and the voluntary and community sector came together with people living with Long Covid to design support based on lived experience rather than assumptions.

From the outset, co-production was central to the programme, with people affected by Long Covid helping to shape the business case, influence priorities and guide delivery.

Listening first

Between 2021 and 2022, people living with Long Covid shared their experiences through workshops, surveys and co-production sessions.

Their feedback highlighted the significant physical, emotional and social impact of the condition, including fatigue, breathlessness, brain fog, loss of confidence, isolation and challenges returning to work

Participants consistently identified the need for:

• Clear and accessible information
• Opportunities for peer support
• Support for families and carers
• Guidance for employers
• Safe and appropriate approaches to physical activity
• Being listened to and believed by services, and these insights directly informed the development of a range of support offers across Lincolnshire.

A partnership built around people

The programme brought together several organisations, each contributing a unique element of support:

• Lincolnshire County Council developed the Long Covid Information Hub through Connect to Support, which has since evolved into the wider Energy Limiting Conditions Information Hub.
• Shine Lincolnshire delivered peer support opportunities, information resources and countywide roadshows.
• Active Lincolnshire created training and resources to help activity providers support people living with fatigue-related conditions safely.
• Every-One facilitated co-production, engagement activities, events, podcasts and awareness raising.

The Lincolnshire Voluntary Engagement Team (LVET) provided programme management, governance and coordination, ensuring strong collaboration across all partners.

Lasting impact

The project achieved significant outcomes, including:

• More than 32 co-production sessions and numerous engagement events involving over 56 participants.
• Development of a comprehensive information hub that has recorded almost 2,000 users and more than 5,000 views.
• Training for 126 activity providers to better support people experiencing Long Covid and fatigue-related conditions.
• Distribution of over 4,000 wellbeing and support booklets across Lincolnshire.
• Delivery of 23 roadshows across all seven Lincolnshire districts, helping people access information, support and connections within their communities. Most importantly, participants reported feeling heard, understood and less alone, while services gained a deeper understanding of how lived experience can shape better support.

Beyond Long Covid

One of the programme's most significant achievements has been its evolution beyond its original purpose.

What began as a Long Covid Co-production Group has expanded to include people living with other Energy Limiting Conditions, such as ME/CFS, Fibromyalgia, Multiple Sclerosis, Functional Neurological Disorder, and cancer-related fatigue.

By recognising the common challenges experienced across these conditions, the project has helped create a more inclusive and sustainable model of support.

The co-production group continues to meet today, providing a platform for people to share experiences, influence services and support one another.

Additional funding secured through Every-One has enabled ongoing events, webinars and opportunities for connection and learning.

A model for the future

The Energy Limiting Conditions Impact and Legacy Report demonstrates that meaningful change happens when organisations work in partnership and place people with lived experience at the heart of decision-making.

By listening to people, working collaboratively and challenging traditional ways of designing services, the programme has created resources, relationships and approaches that continue to benefit Lincolnshire residents today.

As the work moves forward, the message remains clear: when people are involved as equal partners in shaping support, lasting and meaningful change becomes possible.

To find out more about Energy Limiting Conditions support in Lincolnshire, visit Connect to Support Lincolnshire, Every-One, or the It's All About People programme.