Prefer to listen?
This website can read aloud to visitors.
ELC Toolkit – Section 7
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 7- Research, policy and resources
This section brings together a non-exhaustive selection of research, policy and practice resources, including professional standards and guidance, trauma-informed approaches, condition-specific information, and accounts of lived experience, to support further learning. If you have suggestions for additional resources to include, please email bethan.evans@liverpool.ac.uk
7.1 Professional Standards
Person-centred care
Inclusion
- Being inclusive and challenging discrimination – The Nursing and Midwifery Council
- Standards of conduct, performance and ethics – The HCPC
7.2 National Policy Context
- Personalised care – NHS England
- Fit for the future: 10 Year Health Plan for England – Department of Health and Social Care
- Equality objectives for 2024/25 and 2025/26 – NHS England
- The Equality and Health Inequalities Hub – NHS England
7.3 Regional Policy
The following examples illustrate how regional systems in the North West are approaching partnership working, inclusion and population health.
- Improving health and care in Greater Manchester 2023-2028 – Greater Manchester Integrated Care Partnership
- Cheshire and Merseyside All Together Fairer: Our Health and Care Partnership Plan 2024-2029 – Cheshire and Merseyside Health and Care Partnership
- Lancashire and South Cumbria Strategy for working in partnership with people and communities 2023-2026 – NHS Lancashire and South Cumbria Integrated Care Board
7.4 Trauma-Informed Care
- Working definition of trauma-informed practice – Office for Health Improvement & Disparities
- National trauma transformation programme – NHS Education for Scotland
7.5 Social Care resources
Work and workplace adjustments
Benefits and financial support
- Citizens Advice
- Turn2Us
- Benefits and Financial Support – Macmillan Cancer Support
- Money, benefits and grants – Parkinson’s UK
- Brief guide to benefits for people with MS – MS Society
Disability rights and advocacy
- Scope
- Disability Rights UK
- Chronic Illness Inclusion
Housing and accommodation
Support for carers
7.6 ME/CFS
Guidance
- Myalgic encephalomyelitis/chronic fatigue syndrome: diagnosis and management guidance – NICE
- The Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) eLearning Programme – NHS England and Department of Health and Social Care
Policy and national strategy
Information, support and advocacy
Research
- ME Research UK
- A Brief Questionnaire to Assess Post-Exertional Malaise
- DecodeME
- Unequal access to diagnosis of myalgic encephalomyelitis in England
7.7 Long Covid fatigue
Guidance
- COVID-19 rapid guideline: managing the long-term effects of COVID-19 – NICE
- A safety-first approach to Long Covid assessment – CSP
Practical management guidance
- NHS Post-Covid fatigue management pack – East Sussex Healthcare NHS Trust
- Fatigue – Long-term effects of COVID-19 – NHS Inform
Research
- STIMULATE-ICP Publications
- LOCOMOTION Long COVID Study
- Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue (PAuSing-Post-COVID Fatigue)
- Understanding and using family experiences of managing long Covid to support self care and timely access to services
- Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial
7.8 Cancer fatigue
- Tiredness (fatigue) and cancer – Macmillan Cancer Support
- Cancer-related fatigue: ESMO Clinical Practice Guidelines for diagnosis and treatment
7.9 Inflammatory and autoimmune condition fatigue
Arthritis
Inflammatory Bowel Disease
- Measure Your Fatigue – Chron’s and Colitis UK
- Interventions for fatigue in inflammatory bowel disease – Farrell, D. et al.
- Inflammatory Bowel Disease (IBD) -Boost Survey: fatigue, pain and urgency in IBD
- Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
- Optimising fatigue, abdominal pain and faecal incontinence in people with inflammatory bowel disease (IBD-BOOST Optimise): feasibility study of a checklist and algorithm for initial nurse-led management – Stagg et al.
- Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease: A UK cross‐sectional survey – Roukas et al.
- Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease – Baget et al.
7.10 Fatigue in neurological conditions
Multiple Sclerosis
Parkinson’s Disease
- Fatigue – Parkinson’s UK
- Parkinson’s Disease-related Fatigue: A Case Definition and Recommendations for Clinical Research – Kluger et al.
- Fatigue in Parkinson’s disease – A narrative review – Panigraphi et al.
Stroke
- Post-stroke fatigue and tiredness – Stroke Association
7.11 Occupational Therapy Advice on Managing Energy
7.12 Understanding lived experience
- Challenging Disbelief & Disregard – University of Liverpool and Liverpool Hope University
- Community-led approaches to supporting health and wellbeing – Healing Justice LDN
- Promoting Mental Wellbeing in Muslim Communities – The Lantern Initiative
Image above created by one of our research participants.
858 words
4–5 minutes