Chronic Fatigue Syndrome Specialist Rehab Programme
Chronic Fatigue Syndrome (CFS/ME) is a relatively common clinical condition, which can cause profound, often prolonged, illness and disability, and can have a substantial impact on the individual and the family. It affects all ages (adults and children), ethnic groups and social classes.
What can we offer patients with severe CFS/ME?
Patients with severe CFS/ME often have a combination of physical, emotional and mental health difficulties in conjunction with complex psychosocial circumstances. Literature showed that in most cases a community based rehabilitation programme is unlikely to influence such complex factors. Inpatient rehabilitation programmes stand a better chance in tackling such problems and achieving improvement on a physical, psychological and functional levels.
The National Institute for Health and Clinical Excellence (NICE) CFS/ME Guidance 2007: "Key principles of care for people with severe CFS/ME" states that most people with CFS/ME will not need hospital admission. However, there may be circumstances when a planned admission should be considered. The decision will be made with the person with CFS/ME and their family, and be based on an informed consideration of the benefits and disadvantages. For example, a planned admission may be useful if assessment of a management plan and investigations would require frequent visits to the hospital. The literature provides further evidence of effectiveness and guidance for best practice models.
Self-referrals and referrals by health care professionals are usually considered. However, we particularly welcome referrals from local community CFS/ME rehabilitation teams. We strongly believe in collaborative work with our colleagues in the local teams. The inpatient rehabilitation programme will be not only based on the results of our own assessment but will be directly influenced by the findings and experiences of our colleagues who have supported the patient in the community.
Inpatient CFS/ME rehabilitation programmes effectiveness in the long term is dependent on a smooth discharge to the care of the local CFS/ME rehabilitation team when the improvements will be consolidated. In most cases a member of St Cyril's clinical staff will assess the patient prior to admission. However, under special circumstances patients may be admitted directly based on the information provided by the referring clinicians.
During the initial assessment in the patient's home, the philosophy of the rehabilitation programme, patient's expectations and goals will be discussed. The admission will be for an initial period of 6 weeks of assessment. Following this a decision will be made to either continue with the rehabilitation programme or to discharge the patient.
The Rehabilitation Programme
Every patient with severe CFS/ME will have a unique set of symptoms and different degrees of emotional and psychological impairments. Therefore an individualised approach to the patient's rehabilitation will be adopted. In most cases the following strategies will be considered:
For many patients, excessive hypersensitivity to noise, light (and to a lesser extent smell and touch) is a dominant cause of their handicap. Slow incremental introduction of such sensory stimuli will be initiated whilst the patient is still in an environment where minimal stimulation is allowed. Many such patients have been bed bound or indoors for years and a very slow desensitization programme will be needed, Pharmacological agents may also play a role of decreasing the patients' hypersensitivity.
Talking therapy as a term encompasses many concepts including Cognitive Behavioural Therapy (CBT), counselling, psychological input etc. For most patients, formal sessions will be needed depending on the findings of the initial assessment. Strategies such as pacing, distraction, challenging negative beliefs and discouraging harmful behaviours are implemented and reinforced by all members of the clinical team.
In the early stages, very slow and gradual increase in the level of activities is supported. Occupational therapists, physiotherapists and psychologists work in unison to ensure progression with minimal risk of inducing relapse or excessive fatigue.
Thorough medical review
Review of pharmacological interventions, further investigations, pain management, sleep management, identification of allergies and mental health assessment are some of the services our medical team provide to our CFS/ME patients and are all integrated within the rehabilitation programme.
Assessment of the psychosocial situation
Exploration of the complex social factors that may have an impact on the clinical manifestations of the patient is of paramount importance. The team will address any significant issues with the patient, social services and the local community CFS/ME services.
The discharge process will be coordinated with the local services to ensure continuity of the approach, maintaining and building on the achievements made during the inpatient stay. Long term support and collaborative work with the local teams are an integral aspect of the philosophy of our specialist service.
Input of different disciplines during admission
This is an estimate of the expected input from our clinical team:
- Medical review: Three times a week
- Consultant ward round: once a week
- Occupational therapy: once a day
- Physiotherapy: once a day
- Psychology: twice a week
- Assistant therapist: 4 times a day
- Dietetics: once a week
Indicators of effectiveness and service monitoring
The following outcome measures will be evaluated on admission, 6 weekly and on discharge:
- General activity measures: Functional Independence Measure (FIM) Barthel Score
- Chalder Fatigue score
- Hospital Anxiety and Depression Score (HAD)
- SF-36 Health Survey Physical Functioning Section
- Patients questionnaire
The service will be subjected to the same rigorous clinical governance procedures as other clinical services in the St George's Health Care Group. This will include regular clinical audits, comprehensive complaint procedures and risk management assessments.
Tariff: Cost on Assessment
Location of the CFS Rehab programme
This service is located at St Cyril's Rehabilitation Unit in Chester.