Bedfordshire Chronic FatigueService (CFS)
Service User Information
About Our Service
We are a pilot service established in April 2013 providing multi-disciplinary assessment, diagnosis and treatment for people experiencing medically unexplained fatigue as their main symptom. The service is provided through collaboration between South Essex Partnership University NHS Foundation Trust (SEPT), Horizon Health, and Bedford Hospital as well as coordinating care with regional social services.
Our multi-disciplinary team consists of:
We aim to provide a comprehensive local service that delivers evidence based treatments, adheres to the National Institute of Health and Care Excellence (NICE) guidance for CFS/ME and coordinate with other agencies required to meet the service users’ needs.
Accessing Our Service
You should consult with your GP about referral to our service. Your GP will check that you meet our referral criteria and arrange the necessary blood/urine tests. On completion of the tests, a copy of your test results is sent to us by your GP together with the referral information.
On receipt of all the required information we will then write to you to ask whether you wish to opt in or opt out of our service, some other forms will be included with this letter. We required the opt in/opt out form to completed and returned. If you have opted in this should be returned with the completed a pre-assessment questionnaire. If you have chosen to opt in, we ask that you return all the others forms blank. Once we have received this we will call you to offer arrange an assessment appointment at our base (see ‘Contact Details’ for our location).
If you are registered with a Luton GP your GP needs to make the referral via Luton
Individual Funding Panel, as there agreement to fund our service will need to be agreed.
Assessment
Assessment appointments take place on a Thursday at our base. Assessment appointments take approximately 2 hours. These appointments can be tiring so you may wish to get someone to assist you with travelling to and from the appointment. The flow chart below shows you what will happen on the day of your assessment and the process for treatment planning:
A report following the assessment will be sent to your GP and you will receive a copy of this. Should treatment by our service not be indicated, we can provide advice or signposting to more appropriate services.
Treatment
NICE recommend Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as treatments of choice for CFS/ME. This is based on the evidence produced following research, which show the treatments as beneficial for 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. This assessment will normally take place at your home. The assessment will include your ability tolook after yourself, your home, participate in leisure/social activities and if relevant undertake work. The
occupational therapist will offer practical advice and interventions to improve your daily function and support you to work toward any social, leisure or work goals you 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. We are continuing to work on building up links with other service providers, and already work closely with agencies that offer nutritional and financial advice.
Cancellations or Missed Appointments
A course of treatment is usually between 12-20 sessions, and is most effective if your appointments are regular and consistent. Appointments usually take place 1-2 weekly initially.
As our service is new, we anticipate there will be a great demand for appointments, so we want to make sure that those attending are able to commit to attending the whole programme. Our service co-ordinator will be able to discuss any difficulties with getting to regular appointments and will try to help problem solve them.
Our policy for cancellations and missed appointments is that if you are unable to attend one of their scheduled appointments, we ask for at least 2 days’ notice where possible. We can then give you option of a telephone session instead, or offer the slot to another person. If you miss the next appointment is missed, we will discuss with you any difficulties you are having engaging in treatment and whether you are able to engage in treatment. We recognise that everyone has different circumstances and look at each person’s needs individually. If there is a reason that engaging in your treatment is difficult, please tell us so we can think about the best way to support you. If you feel unable to discuss this with your treating clinician(s) then you can speak to our service coordinator.
Service Evaluation
As a service we carry out standard service evaluations in order to ensure an evidence based practice is maintained and the service we provide is appropriate for you.
What will it involve?
You may have already completed some self-administered questionnaires, this will happen shortly before or during your initial assessment. These questionnaires take approximately 45 minutes to complete, and you can do them at your own pace. After treatment within the Bedfordshire Chronic Fatigue Service you will be asked to fill in the questionnaires again, to see whether circumstances have changed. After about 3 months, there will be a follow-up session, at which time you will be asked to tell us about how you have been feeling and coping since the end of your treatment, and complete the questionnaires again.
All information we receive is strictly confidential, and questionnaires will be kept within your files. The data is stored on a computer that can only be accessed by members of the team. All data collected from your participation will be identified by a numbered code and you cannot be identified through the code assigned to you.
Contact Details:
Bedfordshire Chronic Fatigue Service
Disability Resource Centre
Poynters House
Poynters Road
Dunstable LU5 4TP
Tel Number: 01582 470918
Fax Number: 01582 709057
Please feel free to call us if you have any questions about our service, or have any questions about referring to us. At present our service operates 3 days per week. We have an answer machine service if there is no one to answer your call and we will call you back in a timely manner.
Useful links and recommended reading:
– information about the recent PACE research trial carried out nationally and client treatment manuals for CBT and GET available for download free
‘Overcoming Chronic Fatigue Syndrome’ by Mary Burgess and TrudieChalder – self-help book on managing CFS
NICE Guidelines for Chronic Fatigue Syndrome/ME – guidelines on assessment, diagnosis and treatment of CFS/ME
5 December 2013