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Supporting people with Energy Limiting Conditions: A practical toolkit for those working in health and care
This is a guide for nurses and Allied Health Professionals (AHPs) working with people living with Energy-Limiting Conditions (ELCs).
The term Energy Limiting Condition (ELC) describes shared experiences across long-term health conditions in which energy impairment and debilitating fatigue are key symptoms. This is more than just being tired. Energy impairment is usually physical and cognitive and has significant negative impacts on all areas of a person’s life.
This toolkit includes a range of resources and is divided into different sections. See below for quick links to different parts of the toolkit.
Table of Contents:
Section 1. Using this toolkit
A quick guide to what this toolkit is, who it’s for, what it includes, and how to use it.
Section 2. Understanding Energy Limiting Conditions
A brief overview of Energy Limiting Conditions across a range of diagnoses and contexts.
Section 3. Barriers to care: causes, experiences and impacts
A brief exploration of some of the key barriers to care, including disbelief, communication barriers, mental health impacts, inequality and discrimination, and the challenges faced by both patients and healthcare professionals.
Section 4. Case study: lived experience of care with an ELC
A detailed case study presenting an individual’s experience, including a timeline of key events and a structured clinical overview covering presenting concerns, medical and social history, and their perspectives, needs and expectations.
Section 5. What good care looks like: a guide for health and care practitioners
A guide to delivering ELC-aware care, including trauma-informed principles, building supportive relationships, communicating effectively, supporting participation in care, and working through common challenges in practice.
Section 6. Making services more accessible
Practical guidance on improving appointment booking, communication, waiting environments, and wider systems and processes to support more accessible, equitable care for people with ELCs.
Section 7. Research, policy and resources
A selection of research, policy and practice resources, including professional standards and guidance, trauma-informed care approaches, condition-specific information, and accounts of lived experience, to support further learning.
Section 8. About the toolkit
The rationale for the toolkit, how it was developed through research and lived experience, and who was involved.
Section 1 – Using this toolkit
Purpose of the toolkit
This toolkit is designed to support healthcare professionals and those working in health and care to better understand and respond to the needs of people living with energy limiting conditions (ELCs), enabling more compassionate, inclusive and effective care. It focuses on practical, achievable guidance relevant to clinical practice alongside locally actionable considerations for service delivery and everyday patient experience.
Grounded in research and accounts of lived experience, and informed by input from health and care staff, it is intended to support small, meaningful changes that individuals and teams can make within existing roles, resources and settings. More detail on the development of this toolkit is provided in Section 8.
Who the toolkit is for
This toolkit is for all healthcare professionals who work with people living with an ELC, with a focus on supporting nurses, allied health professionals (especially occupational therapists and physiotherapists) and psychotherapists, given their key role in ongoing care (see section 8). It may also be useful for educators involved in teaching or training healthcare professionals.
In addition, the section on making services more accessible is also likely to be of interest to service managers, administrators and those involved in service design.
How to use the toolkit
The toolkit is designed to be a flexible, self-directed learning resource. It can be used for individual reflection, team discussion, or as part of local training and professional development, and to support the practical application of learning in clinical practice and service delivery.
This toolkit is not a replacement for condition-specific clinical guidance and is not designed to be a self-management resource for patients.
What the toolkit contains
The toolkit includes:
- Section 2- An overview of what energy-limiting conditions are
- Section 3 – Evidence on where and why ELC care can go wrong, and the impact on people with ELCs for individuals
- Section 4 – A case study illustrating the complexity of living with ELCs and the challenges experienced in the health and care system from a lived experience perspective
- Section 5 – Practical, trauma-informed principles to support people with ELCs in practice
- Section 6 – Guidance on making services more accessible
- Research, policy and practice resources
Share this toolkit
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