ELC Toolkit – Section 8

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This section is part of the Energy Limiting Conditions Toolkit for nurses and Allied Health Professionals. Click here to access the starting page of the Toolkit.

Section 2 – Understanding Energy Limiting Conditions

Section 3 – Barriers to care: causes, experiences and impacts

Section 4 – Case study: lived experience of care with an ELC

Section 5 – What good care looks like: a guide for health and care practitioners

Section 6 – Making services more accessible

Section 7 – Research, policy and resources

Section 8 – About the toolkit

Section 8 – About the toolkit

This toolkit has grown out of a shared recognition that people living with ELCs are often not well understood or supported within health and care systems.

The origin of this work lies in the insights shared by people with lived experience of ELCs through two research projects led by the University of Liverpool and Liverpool Hope University, in collaboration with partner organisations.

The first project, funded by the British Academy, analysed data collected by Chronic Illness inclusion to inform a Department of Health and Social Care review of women’s health and wellbeing in England. Outputs from this work included a series of policy briefs, an animation, and a medical education resources (available here)

The second project, funded by the Arts and Humanities Research Council (AHRC) as part of the NHS 75th anniversary, built on this work by working with people of marginalised genders living with ELC. Through a series of artist-led creative workshops, including dedicated workshops for LGBTQIA+ participants and Muslim women (in collaboration with The Lantern Initiative), the project explored what better health and social care could look like now and in the future.

Alongside this, Healing Justice London facilitated discussions with healthcare professionals to explore barriers to improving care for people with ELCs, resulting in a policy brief based on participants’ reflections and experiences (available here).

This work was then brought into dialogue with other health and care practitioners through the ‘Provocations’ seminar series run by NHS R&D NW and the University of Liverpool, which aims to bring researchers and practitioners together to explore ideas, share perspectives, and connect research with practice. Follow-on discussion groups and further engagement, supported by a University of Liverpool Impact Acceleration Account (IAA) award, created space for more in-depth exploration of some of the challenges faced in practice in relation to supporting people with ELCs. These conversations involved clinical and non-clinical staff working across the health and care system, many of whom also had lived experience of ELCs.

These conversations highlighted a range of ideas and insights on how the healthcare system could better support people with ELCs. Many of these point towards the need for more flexible, individualised and joined-up approaches to care, which would require wider systemic change beyond the scope of this work.

However, they also identified opportunities for more immediate, smaller-scale changes that can be made within existing roles and settings. These offer a way to support individuals and teams to make a tangible difference to people’s access to, and experience of, care.

Education and training were frequently identified as important mechanisms for change, particularly in raising awareness of these conditions, the impact of disbelief, and the importance of recognition, validation and empathy in care. Participants also emphasised the value of incorporating lived experience perspectives and connecting practitioners with relevant research and resources.

Through these discussions, nurses, allied health professionals (especially occupational therapists and physiotherapists) and psychotherapists were identified as playing a significant role in ongoing ELC care, but often without access to sufficient training, support or practical resources.

Alongside this, practical areas for improvement were identified, including appointment systems and waiting environments, both in terms of physical and sensory comfort, and how these spaces and processes are experienced in practice.

Based on this feedback, this toolkit was developed to address these gaps by providing practical guidance and support, focusing on what can be done within everyday roles, settings and services to improve people’s experiences of care.

In developing this toolkit, we have continued to invite feedback from those working in health and care to help ensure that it is relevant, usable and meets the needs of those working across the system.

Using and sharing this toolkit

This toolkit is designed to be used in practice and shared with colleagues. You are welcome to adapt or build on this toolkit to suit your context.

We would like to thank all those who contributed their time, experiences and insights to the development of this toolkit, including people with lived experience of ELCs and professionals across health and care.

If you use or reference this toolkit, please cite it as:

Disbelief and Disregard (2026) Supporting people with Energy Limiting Conditions: A practical toolkit for those working in health and care. Available at: https://disbeliefdisregard.uk/toolkit/

Developed in collaboration with people with lived and professional experience of ELCs. We welcome feedback and examples of how this toolkit is being used to support ongoing learning and development. We would be happy to hear from you – please get in touch with Professor Bethan Evans via the email in this page.

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