The Specialist Chronic Fatigue Syndrome/ ME Service

Transcription

1 The Specialist Chronic Fatigue Syndrome/ ME Service Other formats For Exeter, East, Mid and North Devon If you need this information in another format such as audio tape or computer disk, Braille, large print, high contrast, British Sign Language or translated into another language, please telephone the PALS desk on What is Chronic Fatigue Syndrome/ME? Chronic fatigue syndrome (CFS) / myalgic encephalopathy (ME) is a condition or spectrum of disorders characterised by persistent or relapsing fatigue lasting more than four months in adults and three months in children. The World Health Organisation classifies CFS/ME as a neurological condition whose symptoms can be as disabling as other serious conditions such as congestive heart failure and rheumatoid arthritis. The National Institute of Clinical Excellence estimates 1 in 250 of the population is affected by CFS/ME. What causes CFS/ME? Currently the causes of CFS/ME are uncertain. Onset can be acute and possible causes include persistent viral infections, immune disturbance, genetic vulnerability and prolonged and persistent stress. International research into the condition and its causes is on-going. What are the symptoms of CFS/ME? Symptoms can be very diverse. These include: Debilitating, persistent fatigue and post exertion malaise. Chronic joint and muscle pain and headaches. Sleep disturbance. Flu-like symptoms, re-current sore throats and painful lymph glands. Problems with information processing, planning and decision making. Leaflet number: 554 / Version number: 1 / Review date: October of 5

2 The role of the specialist consultant within the CFS Service Chronic fatigue syndrome is a disorder that is made up of a spectrum of symptoms which have an overlap with a wide number of other medical conditions. Our service does its best to provide education and information for general practitioners (GPs) to ensure that the large majority of patients that we see in our clinics do not have other medical problems that would be best dealt with elsewhere. However, despite this, the complexity of the way that patients present to us means that it is important for most of the patients entering into the service are seen by one of the two medical consultants at the beginning of the assessment to ensure that the diagnosis of CFS/ME is correct. Where initial assessment confirms a diagnosis of CFS, this will allow us to provide advice about medical aspects of symptom-control which may relate to pain, sleep disturbance or mood change for instance. Where the diagnosis is in doubt, a proper medical assessment can allow for appropriate further investigation or referral to other specialist services. At the end of the consultation, the consultant will agree a suggested plan of management which may include referral to the therapy team of the CFS/ME service together with some written suggestions to the GP about further investigations or actions to help symptoms. On occasions, it might be helpful for the consultant to see the patient at a later stage after therapy input, to see if there is anything further that can be added medically in terms of help or advice. How is it treated? - treatment guidelines The Exeter, East, Mid and North Devon CFS/ME Service is commissioned to provide treatment based on the National Institute of Clinical Excellence (NICE) guidelines. The NICE guidelines recognise CFS/ME as an illness characterised by fluctuating symptoms including debilitating fatigue which can have a substantial impact on those with CFS/ME and their carers. Specialist CFS/ME services are designed to provide an individualised, person-centred programme. The role of the therapy team Following diagnosis and specialist medical intervention, the occupational therapist will be able to offer an assessment appointment. This is an opportunity to assess the full impact of CFS/ME on all aspects of day to day living and on employment, family and social roles. Working collaboratively the therapist and patient can explore the person s existing self-management strategies and NHS treatment options. The intervention can also help to increase understanding of the condition and factors that perpetuate the symptoms. The Specialist Chronic Fatigue Syndrome/ME Service 2 of 5

3 The occupational therapist can make a unique contribution to helping people with CFS/ME set and attain realistic goals for grading activity. Treatment may focus on the following goals: To restore a balance between rest and activity in a multi-tasking lifestyle. To overcome difficulties with concentration, memory and information processing. To develop problem solving and goal setting techniques. To increase participation in valued social activity. Group treatment programme The group treatment programme is a well-established part of the CFS/ME service and brings together a number of recommended evidence based treatment approaches. The group incorporates effective rest and relaxation skills with opportunity to practice these in a supportive environment. Techniques are also explored to address difficulties with activity levels, cognitive deficits, managing stress and assertion. Working in a group setting can help with issues of validation and coming to terms with the diagnosis. The group follows a cognitive behavioural therapy approach and usually meets fortnightly for approximately 11 sessions with a final session three months later to review progress. Guided self-help Individual sessions of guided self-help are offered to those who are unable to attend the group programme. A self-management manual can be given which details a number of techniques focusing mainly on activity management. Sessions with the occupational therapist may also explore a range of other factors associated with the illness. Working with the severely affected The service recognises that CFS/ME can affect some sufferers more severely and this can cause people to be isolated and unable to access healthcare away from their home environment. Due to the limited resources available to the team, the need for home assessments and appointments are carefully assessed. Once home treatment has been agreed, a specialist occupational therapist will work with the patient and their carers, where appropriate, to provide an individual treatment plan and therapeutic goals. The Specialist Chronic Fatigue Syndrome/ME Service 3 of 5

4 Policy for missed appointments Due to the small number of therapy hours and large geographical area the service covers, it has been necessary to develop a firm non-attendance policy. Within the NHS, approximately 12% of appointments are missed, which disadvantages patients who wish to attend as urgently as possible. We appreciate the fluctuating course of the illness but we ask that appointments are cancelled only when absolutely necessary and with as much notice as possible. Please contact the service to request another appointment. As we are a part time service, there may be a considerable delay in re-scheduling your appointment. When appointments are missed without informing the service, this may result in automatic discharge back to your GP. Further information Exeter, East, Mid and North Devon CFS/ME Service Arlington Centre Exeter Community Hospital Hospital Lane Exeter EX1 3RB Tel: Useful websites British Association for CFS/ME: (Tel: ) ME Association: (Tel: ) Action for ME: (Tel: ) NICE: Department of Health: PALS The Patient Advice and Liaison Service (PALS) ensures that the NHS listens to patients, relatives, carers and friends, answers questions and resolves concerns as quickly as possible. If you have a query or concern call or ndht.pals@nhs.net. You can also visit the PALS and Information Centre in person at North Devon District Hospital, Barnstaple. Alternatively, it may be possible for us to arrange an appointment in your area. The Specialist Chronic Fatigue Syndrome/ME Service 4 of 5

5 Have your say Northern Devon Healthcare NHS Trust aims to provide high quality services. However, please tell us when something could be improved. If you have a comment or compliment about a service or treatment, please raise your comments with a member of the ward staff or the PALS team in the first instance. Patient Opinion comments forms are on all wards or online at Northern Devon Healthcare NHS Trust Raleigh Park, Barnstaple Devon EX31 4JB Tel Northern Devon Healthcare NHS Trust This leaflet was produced by the Communications Department. Please contact to help us improve our leaflets. The Specialist Chronic Fatigue Syndrome/ME Service 5 of 5