"The cost of our multi-disciplinary assessment and a standard course of treatment is £3860."
This is a lot more than the cost estimated in the PACE Trial cost effectiveness study.
Chronic Fatigue Syndrome Service
The Chronic Fatigue Syndrome Service provides assessment, diagnosis and treatment for people experiencing medically unexplained fatigue as their main symptom living in Bedfordshire (excluding Luton).
National Institute for Health and Care Excellence (NICE) recommend Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as treatments of choice for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This is because these treatments are known to be beneficial for people with CFS/ME. There may be lots of other recommendations which can be found online or from other sources, but for now, CBT and GET are the only treatments, with enough evidence to warrant provision of them by the NHS. Our team may recommend a combination of both recommended treatments, or a course of either one. Prior to participation in GET a full assessment will be undertaken by our physiotherapist.
Where appropriate, our occupational therapist will carry out a home assessment of your ability to function day-to-day. The assessment will include your ability to look after yourself, your home, participate in leisure/social activities and, if relevant, undertake work. The occupational therapist will offer practical advice and help to improve your daily function and support you to work towards any goals you may have.
We may then coordinate with your local community service(s) to participate in the delivery of your treatment under our guidance, or treatment may be provided solely within our service. If you do have any needs that fall outside of our treatment capabilities we coordinate referral to the appropriate services, in order to offer you a streamlined service.
How Long Will the Treatment Last
A course of treatment is usually up to 16 sessions, and is most effective if your appointments are regular and consistent. Appointments usually take place either weekly or fortnightly.
Where service is based
Bedfordshire Chronic Fatigue Service
Disability Resource Centre
Hours of operation
The service operates Monday to Friday.
The office can be contacted on:
Tuesday 09:00 -13:00
Wednesday 09:00 – 17:00
Thursday 09:00 – 17:00
Outside of these hours a voicemail can be left and we will respond as soon as possible.
How to contact service
Tel: 01582 470918
Fax: 01582 709057
How to access service
Please ask your GP for a referral
Referral criteria & how to refer
People whose principal symptom is fatigue and it is:
GP and health professionals can refer via a letter, for referrals from health professionals we will liaise with the GP for any referral information outstanding such as blood and urine test results.
- Age 16 and above
- Persistent or relapsing and present for 50% of the time
- Of definite onset, not lifelong, of at least 4 months duration
- Associated with other symptoms such as joint and muscle pain, reduced memory and concentration, disturbed and un-refreshing sleep
- Having substantial impact on daily activities
- Cannot be medically explained and all reasonable efforts to have been made to exclude alternative diagnoses, both physical and mental (NICE 53).
Our service is free to GP’s falling under Bedfordshire CCG. For those with a Luton or out-of-area GP, the GP will need to refer via their CCG Individual Funding Panel to agree funding prior to us accepting the referral. The cost of our multi-disciplinary assessment and a standard course of treatment is £3860.
Test Results RequiredThe following should have been undertaken in the last six months and a copy of the results should be sent together with the referral:
- Main symptoms, information about onset and duration of illness
- Sleeping Habits
- Any current psychological / social stressors
- Previous investigations, opinions and treatments for this problem
- Any other medical or psychological problems which are relevant
- Copies of any past reports associated with the above
- Details of current medication
Other tests to consider, only if indicated for other reasons:
- Urine tests: Urinalysis for Protein, Glucose and Blood
- Blood tests for: FBC, U&E (inc Creatinine), LFT, TFT, ESR, CRP, RBG, Coeliac Screen /gluten sensitivity, Calcium, Creatine Kinase.
- In younger adults: Additionally Ferritin
Exclusions from service
- Ferritin, B12, Folate, (eg, in macrocytosis)
- Serology testing (such as HIV, Hep B/C)
- Acute viral infections : EBV / CMV / Infectious Mononucleosis / Toxoplasmosis
- If electrolyte imbalance, consider 8am Cortisol
What response time to expect
- Patients with worsening Neurology/ CaudaEquina symptoms
- Patients with serious Medical Pathology
- Patients with primary drug or alcohol problems
- Patients with serious unstable conditions (i.e. Heart/ CVS/ Respiratory etc.)
- Patients with severe and enduring psychological problems better treated in mental health care
- Patients who are not willing to opt-in to the service
- People whose predominate problem is pain (these are more suitable for the pain management service run at the Luton and Dunstable Hospital)
Our consultant will review the referral once all the required information is received. If nothing further is required we will write to the person referred, we aim to do this in 2 weeks. The person referred will receive a service opt in/out form, a service information leaflet, a pre-assessment questionnaire and pre-programme questionnaire pack. On receipt of the completed opt in/opt out form and pre-assessment questionnaire we will send the person referred an assessment appointment. Prior to the appointment a member of our team will telephone the person to assist with completing the pre-programme questionnaire pack.
The waiting time for an assessment is currently around 3 months owing to the high demand for our service.
SEPT management responsible for service
Jane Forbes-Pepitone – Team Coordinator
Tel: 01582 470918
Dr Greg Wood – Clinical Service Manager
Tel: 01582 709085
Hugh Johnston – Associate Director
Tel: 01268 246861