Chronic fatigue syndrome myalgic encephalomyelitis or encephalopathy Implementing

Chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy) Implementing NICE guidance 2007 NICE clinical guideline 53

Changing clinical practice NICE guidelines are based on the best available evidence The Department of Health asks NHS organisations to work towards implementing NICE guidelines Compliance with developmental standards will be monitored by the Healthcare Commission

What this presentation covers Background Key recommendations Implementation advice Costs and savings Resources from NICE

Definition Range of symptoms including: • • • Fatigue Malaise Headaches Sleep disturbance Difficulties with concentration Muscle pain

Why this guideline matters Prevalence of CFS/ME: 0. 2– 0. 4% Considerable variation in current practice Complex diagnosis Significant impact on patients and families

What the guideline covers Presentation, diagnosis and pathway of care General principles of care General management strategies after diagnosis Specialist CFS/ME care

Key recommendations General principles of care Diagnosis and initial management Specialist CFS/ME care

General principles of care Share decision making between person with CFS/ME and healthcare professional Explain treatment options, and the right to withdraw or refuse Give information on CFS/ME and sources of information and support Take account of the patient’s age and the severity of their CFS/ME

General principles of care Establish a supportive and collaborative relationship Engage with the family Offer services in a way that suits the patient – for example, home visits, or using phone or email

Diagnosis and management: adults Initial assessment Take a full history Examine the person Assess their psychological wellbeing Arrange investigations Investigate symptoms before attributing them to CFS/ME Consider other investigations according to symptoms Manage symptoms Give advice Offer referral if the person has severe CFS/ME Make the diagnosis if symptoms have lasted 4 months and other diagnoses have been excluded Reconsider if none of the following are present: post-exertional fatigue or malaise, cognitive difficulties, sleep disturbance, chronic pain

Diagnosis and management: children Child or young person presents with symptoms that may indicate CFS/ME Refer to a paediatrician for assessment within 6 weeks of presentation Paediatrician should make or confirm the diagnosis if symptoms have lasted 3 months and other diagnoses have been excluded Consider referral to specialist care: • Within 6 months of presentation for child/young person with mild CFS/ME • Within 3– 4 months of presentation for child/young person with moderate symptoms • Immediately for child/young person with severe CFS/ME Reconsider if none of the following are present: • Post-exertional fatigue or malaise • Cognitive difficulties • Sleep disturbance • Chronic pain

Mild CFS/ME Mobile, can care for themselves and do light domestic tasks with difficulty May still be in work or education but has probably stopped all leisure and social pursuits Often takes days off or uses the weekend to cope with the rest of the week

Moderate CFS/ME Reduced mobility and is restricted in all activities of daily living Has probably stopped work, school or college and needs rest periods Sleep is generally poor quality and disturbed

Severe CFS/ME Unable to do any activity, or minimal daily tasks only Severe cognitive difficulties and depends on a wheelchair for mobility Unable/barely able to leave the house May spend most of their time in bed Often extremely sensitive to light and noise

Initial management Manage symptoms early – do not wait for diagnosis Advise about: • fitness for work and education • adjustments or adaptations Liaise with: • employers • education providers • support services

Specialist CFS/ME care Base the decision to refer to specialist CFS/ME care on: • the person’s needs • symptoms (type, duration, complexity, severity) • comorbidities Decisions should be made jointly Offer referral within 6 months if CFS/ME is mild, 3 -4 months if moderate and immediately if severe

Specialist CFS/ME care Offer a person-centred programme that aims to: • sustain or extend the physical, emotional and cognitive capacity • manage the physical and emotional impact of symptoms Offer cognitive behavioural therapy and/or graded therapy for mild or moderate CFS/ME

Specialist CFS/ME care Offer management options including, as appropriate: · · · cognitive behavioural therapy graded exercise therapy activity management sleep management rest and relaxation diet

Specialist CFS/ME care Supervision or support by a specialist Community services may be needed Offer a record of every consultation Discuss benefits and disadvantages of hospital admission with the patient and their family

Key areas for implementation Feedback to NICE suggests that there are likely to be three key areas for successful implementation: • training and education • continuity of care and access to services • workforce planning and resources

Training and education Many different specialists involved in care – all should be similarly educated about CFS/ME • Make local clinicians aware of CFS/ME and specialist services • Offer training and awareness raising to non-specialists and non-healthcare professionals • Make appropriate training available in the recommended interventions

Continuity of care Good communication is essential for seamless care • Use local referral protocols • Ensure relevant professionals are aware of management plans • Review home services and telephone and email support for people with severe CFS/ME

Workforce planning and resources CFS/ME services are complex, and involve a variety of professionals and settings • Assess skill mix • Ensure the service is able to provide the recommended interventions and advice

Costs and savings: per 100, 000 population Recommendations with significant costs Costs (£ per year per 100, 000 people) CBT for mild or moderate CFS/ME £ 2, 000 GET for mild or moderate CFS/ME £ 1, 000 Activity management for mild or moderate CFS/ME £ 2, 000 Activity management for severe CFS/ME £ 2, 000 Estimated cost of implementation £ 7, 000

Benefits of implementing the guideline • Benefits of implementing the guideline are not quantifiable • Early intervention could reduce disease progression • Improved diagnosis could lead to improved referral • Return to education or employment

Resources from NICE Costing tools • costing report • costing template Implementation advice Audit criteria www. nice. org. uk/CG 053

Access the guideline online Quick reference guide – a summary NICE guideline – all of the recommendations Full guideline – all of the evidence and rationale ‘Understanding NICE guidance’ – a version for patients and carers www. nice. org. uk/CG 053