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Slide 1: CHRONIC FATIGUE SYNDROME OUPATIENT PHYSIOTHERAPY ESSEX CENTRE FOR NEUROLOGICAL SCIENCES PATIENT SATISFACTION SURVEY
Slide 2: The specialist Chronic Fatigue Syndrome Team at Oldchurch Hospital, Romford Essex is made up of one Lead OT, two Senior I OT’s, one senior II OT, a basic grade OT, two part time counsellors and one Senior I Physiotherapist. There is also access to specialist medical staff, nursing staff and a dietician. Funding has recently been secured from the department of health to expand the multi-disciplinary team. The physiotherapist is responsible for the physiotherapeutic management of six inpatient beds that accept nationwide referrals and an outpatient service that accept referrals from the local area. Clients seen as inpatients include very severe presentations of CFS that often leave the client permanently bed-bound for a number of years, severely deconditioned, with multiple chronic pains and vestibular or orthostatic intolerances, along with a host of other co-morbidities and sensitivities. Intervention with these clients is challenging and calls on an array of skills and a psychosocial medical model. The physiotherapist works closely with other disciplines to implement a rehabilitation programme and prepare an appropriate post-discharge package in their local area.
Slide 3: Clients seen in the outpatient clinic are a heterogeneous group with symptoms ranging from minor fatigue to debilitating and long-term fatigue and pain with a number of co-morbidities such as migraine. Many of these clients are at times bedbound or house-bound. Despite several controlled studies demonstrating the efficacy of graded exercise, Action for ME report in a 2001 survey that a staggering 610 of 1214 respondents believed graded exercise had made their condition worse. Many CFS sufferers present with a subjective history of physiotherapy proving harmful and are cautious of further input. In the midst of ongoing controversy regarding the use of graded exercise, a survey was conducted to assess patient satisfaction with the Outpatient CFS Physiotherapy Service. Currently, funding limits the service to providing a maximum of six treatment sessions. Due to the variety of presentations, physiotherapy intervention is by no means limited to the prescription of graded exercise. It can include anything from advice for hyperventilation or relaxation, to spinal mobilisation for cervical spine pain, to gait and balance retraining. Patients are often provided with a written instructions to commence physical rehabilitation independently. Ongoing guidance can be provided via telephone.Some patients are best helped by immediate referral on to other services within the team, externally or in the patient’s local area.
Slide 4: The Survey Details • Surveys were sent by post to all clients who were discharged from the CFS Physiotherapy Service from December 2003 to February 2004. • Surveys were sent with an explanation of the survey and anonymity. • A pre-paid self-addressed envelope was provided for returning the survey. • Clients were informed of a two-week deadline for surveys to be included in an analysis. • Of 22 surveys sent, 13 (59%) were returned within the required time frame
Slide 5: THE SURVEY CHRONIC FATIGUE SYNDROME PHYSIOTHERAPY OUTPATIENT SATISFACTION SURVEY 1. How long after you were referred to physiotherapy by Dr Davis or your Occupational Therapist did you wait for your initial CFS physiotherapy assessment? (Please tick) Less than 2 weeks 2 weeks – 2 months months 2 – 4 months 4 – 6 months 2. How do your feel that your condition changed while you were waiting for your initial CFS physiotherapy assessment? (Please tick) Very much better Somewhat Better No ne Somewhat worse ery much Worse 3. Please rate the following in order of concern for you from 1 (most concerning) to 3 (least concerning) Pain Fatigue (including ability to relax, breathing, feeling exhausted) Functional ability / Fitness (e.g. ability to walk or exercise, carry out daily tasks, participate in activity) Other _____________________ 4. What effect do your feel the CFS physiotherapist had in managing your PAIN? (Please tick) Excellent Good None Bad Very bad Thank you for taking the time to complete this satisfaction survey and returning it to us promptly to help us monitor and improve our service. I am not sure 6-12 months More than 12 5. What effect do you feel the CFS physiotherapist had in managing your FATIGUE? (Please tick) Excellent Good None Bad Very bad 6. What effect do you feel the CFS physiotherapist had in managing your FUNCTIONAL ABILITY or FITNESS? (Please tick) Excellent Good None Bad Very bad 7. How would you rate the communication with the CFS physiotherapist? (Please tick only one in each column) 8. Overall, how would you rate the your satisfaction with the CFS physiotherapy service? (Please tick) Excellent Good Average Below Average Poor 9. Do you have any other comments or suggestions for the CFS physiotherapy service? 10. OPTIONAL- If you would like us to contact you to address any specific issues you have raised please provide contact details here:
Slide 6: WAITING LIST TIMES 60 50 40 30 20 10 0 Le s s t h a n 2 we e ks 2 we e ks 2 m o nths 2 -4 m o nths 4 -6 m o nths 6 -1 2 m o nths o ve r 12 m o nths n o t sure • At least 73% were waiting over 6 months on the waiting list
Slide 7: CHANGE WHILE WAITING 50 45 40 35 30 25 20 15 10 5 0 V ry m uc h e im p r o v e d So m e w h a t im p r o v e d No c h a n g e So m e w h a t w o rse V ry m uc h e w o rse • 38% became somewhat to very much worse while waiting
Slide 8: PATIENT RATING OF IMPORTANCE 70 60 50 40 30 20 10 0 1 2 3 1 = h i g h e s t p r i o r i t y 3 =l e a s t p r i o r i t y Ra t in g p a in % Ra t in g f a t ig u e % Ra t in g Fu n c t io n /Fit n e s s % • 69% rated fatigue as their main symptom • Depression was mentioned by one respondent as a symptom
Slide 9: RATED EFFECT OF THERAPY 70 60 50 40 30 20 10 0 Ex c e lle n t Go o d No n e Ba d V r y Ba d e Ef f e c t o n Pa in % Ef f e c t o n Fa t ig u e % Ef f e c t o n Fu n c t io n /Fit n e s s % • 46% report a good effect on function or fitness • 31% report a good effect on pain • 31% report a good effect on fatigue
Slide 10: PATIENT RATING COMMUNICATION 100 90 80 70 60 50 40 30 20 10 0 5 4 3 2 1 Re c e p t iv e Co m m u n ic a t io n % Ex p r e s s iv e Co m m u n ic a t io n % 1 =f u l l y a b l e 5 =f u l l y u n a b l e • Communication between the patient and physiotherapist was globally rated very highly
Slide 11: OVERALL SATISFACTION 60 50 40 30 20 10 0 Ex c e lle n t Go o d Av e r a g e Be lo w Av e r a g e Po o r • 77% rated their satisfaction with the service as good or excellent
Slide 12: Comments made by respondents: • • • • • • • Shorter appointments would mean a shorter wait after referral More massage, not just exercise Due to the fatigue and pain I am currently feeling I do not feel able to do the exercises recommended by the physiotherapist I would have liked to have more sessions. I was only allowed about 6 sessions, so I had to wait to be re-referred back for more details (contact details provided) [The service] Could be better. Waiting period for initial consultation TOO LONG I was very grateful for the way named physio understood my need and was able to arrange for a more local treatment. It was a great shame she was unable to make the referral sooner It should be more than 6 sessions & a shorter waiting list - I know this last suggestion is difficult but it was incredibly depressing waiting for some form of fatigue treatment, however the named physio really worked on my muscles in my shoulder/back and made my life a lot more comfortable Not [no suggestions] at the moment, I found them very helpful I found the physiotherapist very understanding, willing to listen and her advice helpful (cont act details provided) • •
Slide 13: KEY POINTS FROM THE SURVEY •The CFS Outpatient Physiotherapy Service is effective in improving function and fitness, which was rated as an important complaint by clients •Despite being unable to help all clients, good communication may be responsible for a high overall satisfaction with the service •The survey suggests that the CFS Outpatient Physiotherapy Service is running as an effective entity within the team despite the challenges of complex presentations.
Slide 14: CHANGES SINCE THE SURVEY • A number of strategies have helped reduce waiting list times – Increasing the frequency of clinics to twice weekly when possible – Reducing appointment time to 30minutes when appropriate – Consistency in physiotherapy staff • Waiting list times in May 2004 average less than two months
Slide 15: PLANS FOR THE FUTURE •The survey may be reviewed and reissued to monitor ongoing services •Further review of referral criteria to the CFS Outpatient Physiotherapy Service to ensure appropriate clientele •Investigation into the potential to increase the number of allocated sessions •With the allocation of funding from the Department of Health to develop the multidisciplinary team, the physiotherapy staffing will reviewed for the possibility of expansion