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									           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:
                      Initial assessment adults
                           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                                           Offer referral if the
   Give advice                                            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

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

                                                   Costs (£ per year
Recommendations with significant costs            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/CG053
            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/CG053

								
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