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Maudsley CFS CBT price list, claims treatment 'can' result in return to work

Discussion in 'Latest ME/CFS Research' started by Esther12, Feb 12, 2014.

  1. Esther12

    Esther12 Senior Member

    Compared to the PACE cost effectiveness paper, costs for CBT have risen a bit (PACE was done a few years ago... inflation, etc ), but the cost of assessment (SMC?) really seems a lot higher. One problem with PACE is that it was done in a way which made it very difficult to conclude that patients should just be left alone, as there wasn't any deliberately worthless placebo control, only the minimal intervention of SMC (which seemed to be little more than diagnosis, but could be used as a further justification for their specialist centres). [Edit: Actually, they use contemporary data for any cost savings made, so surely they should use contemporary data for the costs of treatment too?]

    From PACE

    Page 39

    Location: Maudsley Hospital
    Mode: Outpatient, outreach
    Chronic Fatigue Service
    including treatment for fatigue in the context of chronic diseases

    • 18+ years
    • Male or female
    • Long lasting physical or mental fatigue which has not responded to usual treatment (three months or more)
    • Profound disability where the fatigue symptoms are impacting on all areas of the person’s life
    • People who frequently attend the GP surgery and are not responding to usual reassurance and advice
    • Disturbed sleep pattern, e.g. the person is sleeping during the day or unable to get to sleep at night and has not responded
    to the usual treatment
    Interventions which may be provided

    • A specialist diagnostic clinical assessment
    • Routine blood tests
    • Appropriate referral to other specialists if necessary
    • Specialist CBT
    • Graded exercise therapy
    • Guided self-help programme prior to face-to-face intervention
    • Resume daily activities
    • Establish sleep routine
    • Address associated anxiety or depression
    • Challenge problematic beliefs which interfere with progress,
    which may relate to the rehabilitation programme,
    perfectionism or low self-esteem
    • Lifestyle changes which may help to prevent relapse
    • A graded return to work, addressing long-term sickness issues
    • A discharge plan incorporating a relapse plan
    Between 50% and 75% of our
    patients have seen an improvement
    in terms of fatigue and physical
    functioning, which can result in
    returning to work following long-
    term absences.

    Our service is an internationally recognised research and
    treatment unit, which provides a specialist diagnostic
    assessment and treatment for people with chronic fatigue
    syndrome (CFS). We have developed models for understanding
    and treating CFS and continue to be at the forefront of
    research and development in this field.
    57% of our patients said they were
    very much better, or much better at
    the end of treatment.*

    * Quarmby et al 2007; Behaviour Research and Therapy, 1085-1094

    [Here's the paper, it's about how CBT does less well in routine practice than RCTs ]

    Our service has evolved in collaboration with patient
    organisations. Our evidence-based treatments are routinely
    evaluated. Our goal is to increase the person’s functioning,
    improve quality of life and well-being, reduce the severity
    of their fatigue and facilitate a return to work or education.
    We pride ourselves in our ability to engage with people who
    have complex and sometimes long-standing difficulties. Our
    treatment is time limited, focuses on recovery and aims to
    help patients develop skills and feel empowered to manage
    their problems independently.
    Our service also offers treatment for fatigue in the context
    of chronic diseases, and for those with medically unexplained
    symptoms like fibromyalgia and irritable bowel syndrome.
    We provide a family-based service for adolescents and a home-
    based treatment for those of all ages who are housebound.
    Care option

    A two-hour diagnostic assessment with a psychiatrist, where a full
    medical history is taken as well as a mental state assessment.
    A physical examination may take place and any current investigations
    may be reviewed. A diagnostic report is sent to the referrer and
    includes a recommended treatment plan.
    Per assessment

    Treatment involves 20 sessions of CBT or graded exercise therapy with
    a psychotherapist or physiotherapist, to help people become less
    functionally impaired and less fatigued by the end of their treatment.
    People are offered follow-up appointments at three-monthly
    intervals after the completion of treatment, for up to 12 months.
    Per session
    Treatment, CBT for
    chronic conditions

    CBT treatment with a psychotherapist or psychologist for fatigue
    associated with chronic conditions, e.g. cancer, diabetes mellitus,
    HIV, multiple sclerosis and rheumatoid arthritis. Recommended for
    up to 20 sessions.
    Per session
    Medical review
    One-hour review by the medical team, which may be needed if
    medication needs to be prescribed or reviewed, or if the person’s
    condition deteriorates. Also available as a second opinion for
    occupational health requirements.
    Per review
    assessment and

    Assessment and treatment as per the standard options, but in the
    person’s home.
    Per assessment
    Per session
    Referrals are accepted from:
    Consultant psychiatrists
    Community mental health
    GP consortia

    Professor Trudie Chalder, Director
    Dr Alastair Santhouse, Consultant Psychiatrist
    Professor Simon Wessely, Consultant Psychiatrist
    Suzanne Roche, Service Lead
    Chronic Fatigue Service
    Mapother House
    Maudsley Hospital
    Denmark Hill
    London SE5 8AZ
    Tel: 020 3228 5075
    Fax: 020 3228 5074
    Last edited: Feb 16, 2014
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  2. Esther12

    Esther12 Senior Member

    [Edit: error by me here. They cite this data for non-PACE costs. For PACE treatments, they calculated their own figures.]

    Actually, for cost they cited this 2009-2010 data:

    I've not found where they got their figures from, but it does seem a bit strange that costs have risen so much for the CBT sessions.
    Last edited: Feb 12, 2014
  3. Artstu

    Artstu Senior Member

    My only thoughts are what a complete waste of money. I've been right through the system and I learnt nothing from it other than the fact I was already doing all I could.
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  4. Esther12

    Esther12 Senior Member

    PACE had 15 sessions of CBT and GET, which by these prices would be:

    £176 * 15 = £2640

    PACE had at least three sessions of SMC. It seems fair consider that the initial assessment and one medical review:

    £739 + £193 = £932

    Total: £3,572

    For a treatment which has been shown to only lead to minor improvements over the control group for questionnaire scores in non-blinded trials, and performs less well outside of RCTs. They claim in their sales pitch that it can lead to return to work... but the evidence indicates that the addition of CBT and GET to patient's medical care does not lead to an improvement in rates of return to work.

    I wonder how many patients who had full access to the available evidence would choose to spend £3,572 on CBT/GET, rather than keep the cash? Or have the money go to research like Lipkins? Also.. they recommend even more sessions than were used in PACE, so the overall cost would be even higher.

    For going to people's homes they charge:

    £966+(20*£503)+£193= £11,219!

    Considering the FINE trial looked at the impact of an exercise intervention on the severely disabled, and found no improvement in their primary outcome, again non-blinded questionnaires, that seems a lot of money.
    Last edited: Feb 12, 2014
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  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    If only one person returned to work, then it can lead to return to work. Its misleading unless they include the return to full work data, and also take into account a normal lifestyle. We can push ourselves to do stuff for a while, and some might start a little work, but can it last? At what cost to our health and lifestyle?

    Also, the misdiagnosis rates are abysmal. I am willing to be the return to work rate is less than the misdiagnosis rate.
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  6. Esther12

    Esther12 Senior Member

    Their inclusion criteria seemed pretty wide:

    lol at "are not responding to usual reassurance" given how poor prognosis seems to be for CFS. Interesting to see so much emphasis put upon disturbed sleep though. I kind of assume that's not required, as it's not a required part of any criteria I'm aware of - bit strange though? Maybe they're now focussing on people with disturbed sleep?
    Last edited: Feb 12, 2014
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  7. Dolphin

    Dolphin Senior Member

    I recall seeing the cost of being referred with CFS to Barts for therapy and it was in the four thousands, I think the mid 4000s.

    I'm pretty sure that the NICE review recommended a lot fewer sessions and the cost was a lot less.

    I think the cost is an interesting issue.
  8. Esther12

    Esther12 Senior Member

    Yeah, I think that they're particularly vulnerable here too, especially as this is one area where they might get outsider paying attention, and wanting evidence of value.

    I'm not sure how good the NHS accountants would be at unpicking a lot of the spin and danger of bias in this area though - they do approve homeopathy!
  9. biophile

    biophile Places I'd rather be.

    If CBT cost £110 per session during the PACE Trial (APT and GET was £100 per session), but now costs £176, this 60% increase could mean that CBT is no longer "cost-effective". The McCrone et al. (2012) paper stated that the cost of CBT would need to increase by 45% and GET by 22% for the cost per QALY to reach the £30,000 threshold.
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  10. Firestormm


    Cornwall England
    Maudsley is a Chronic Fatigue Service. Correct? Not a unique CFS/ME Service.

  11. Valentijn

    Valentijn Senior Member

    Yes. They think that other people with chronic fatigue or continued disability after being "cured" or supposedly appropriately treated are also nuts. Fatigue must be psychological and must be treated with psychological therapies. Etc, etc.

    Bunch of morons.
  12. Esther12

    Esther12 Senior Member

    Their treatments are equally 'effective' for all! The research they cited for themselves was CFS stuff though.
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  13. Dolphin

    Dolphin Senior Member

    I found it. This is from 2009:

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  14. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Unfortunately, all of the UK's NHS CFS/ME services are only chronic fatigue based by default.

    CFS/ME diagnosis in the UK thus does not resemble a neurological condition as no abnormal neurological signs are required to be diagnosed with CFS/ME.

    Consequently, therapist based delivery services for the UK patient for both CFS/ME and Maudsley Chronic Fatigue (F48.0) categorised fatigue treatment available on the NHS is:

    Graded Exercise
    Family Therapy and Counselling (if available and appropriate)
    Relaxation therapy advice
    Vitamin D tests (sometimes)
    Advice on nutrition and diet (sometimes)
    Sleep advice, and medications for sleep
    Antidepressants for pain (if appropriate)

    In conclusion the above 'treatment' used at the 'specialist' CFS/ME Centres, mirrors the treatment used by SLAM (South London and Maudsley), and that of the NICE guidelines for CFS/ME.

    The exception to the rule is when a CFS/ME 'expert' refers a patient onto other diagnostic services, (such as an immunologist) that other clinicians of psych CFS tend not to do, because in their eyes this would be focusing on the Chronic Fatigue patient's ''beliefs'' they have an ongoing biological disorder. Psychiatrists also can chose to refer as non psychiatrists although this would be rather counter productive as then the patient would likely not come back for behavioural management to prevent the alleged ''automatic negative thoughts'' causing their 'fatigue'.

    In practice this is the only real difference in the UK when patients are attending a Chronic Fatigue Maudsley service, or a Chronic Fatigue Syndrome (CFS/ME service).The difference being the underlying skepticism of the medical professional of the disorders CFS and ME, being organic or not.

    For those with unexplained chronic fatigue (called CFS/ME) and mild to moderate CFS who respond to psycho-behavioural treatment (CBT, GE, Pacing etc) these 'CFS/ME' services may be of some use, but for those with severe grade ME and CFS, those with single or even multiple chronic infections driving their autoimmunity, these 'fatigue' based services are wholly inadequate and ineffective in managing, never mind treating their inflammation based diseases.

    Long term this neglect and denial of people in society labelled with ME or CFS (who have serious biological disorders that can be life threatening) leads to increased rates of cancers, arthritis, atherosclerosis (associated to heart attacks and strokes) and other serious disease based secondary effects of the primary disease being ignored, or misdiagnosed as CFS or CFS/ME.

    A simple way out of this confusion of both patient and therapist/doctor not knowing who has what, would be to diagnose people using sub groups, and treat the sub groups with different therapies to see who responds and who doesn't.

    As things stand, no specialist (who believes in organic CFS or not) knows who they are seeing and so theories of real vs not real or half-real are maintained and we all go around in circles.

    Introducing a screening test, for 'fatigue' or 'pain' or 'immune activation' based biomarkers using findings of CFS biomedical research, would be able in a basic way to select sub groups to be created to divide patients up in clinics.

    Cytokines and Chemokines
    NK Cell, T Cell, B Cell activity
    Oxidative Stress Markers

    Then the appropriate patients could go to the Maudsley, and the appropriate patients could attend CFS/ME centres, with less focus on behavioural management techniques and more on trying to control chronic low grade inflammation, and the effects of this.

    Anti-oxidant supplements, or IV infusions.
    Anti cytokine drugs.
    Non invasive cardio based screening tests, such as CT scans for Coronary Artery Calcification.
    Cognitive dysfunction tests to rule out mild cognitive impairment (pre dementia) or diagnose short term memory impairment.
    Re feral to counselors in cases of NHS based iatrogenic harm (harm caused by doctors).
    TILT table tests to detect evidence of autonomic dysfunction. (Dr Newton has already suggested this should be in the next NICE guidelines).
    DEXA scans to screen for Osteoporosis.
    Xray and MRI to screen for Osteoarthritis in those with report chronic severe join pain.
    A batch of complex autoimmune and other immune based assays.
    Pathogen screening.

    All of this could be done now, and should be being done now.
    Last edited: Feb 16, 2014
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  15. Bob


    England (south coast)
    I haven't read through this thread in detail, so I might be repeating stuff...

    Based on the outcomes of the PACE trial, the FINE trial, and the National Outcome Database Study*, I wonder if any of the following could be challenged in terms of misrepresenting the therapeutic effect of the treatments provided:
    All quotes taken from the 'chronic fatigue' section of the South London and Maudsley NHS Foundation Trust publication:

    * This large study of found that England's specialist CFS/ME clinical NHS services led to no significant improvement in physical function:
    Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
    Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database.
    QJM 106:555-65.
    Last edited: Feb 18, 2014
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  16. biophile

    biophile Places I'd rather be.

    The services may be facilitating the return to work for those who can work, but it goes beyond the evidence to claim that CBT/GET or similar therapies can themselves increase the chances of returning to work for CFS patients.

    As for the NOD data contradicting the claim that "50% and 75% of our patients have seen an improvement in terms of fatigue and physical functioning", does the NOD paper do a sub-analysis of the data from that specific service only?
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  17. Bob


    England (south coast)
    I was wondering that myself, and I just had a look through it.
    I don't think it included Maudesy, unfortunately.

    I can't find a list of the six centres that took part in the study, but looking at the acknowledgements, I think these maybe them:
    • North Bristol NHS Trust
    • Somerset Partnership NHS Foundation Trust
    • Leeds and York Partnership NHS Foundation Trust
    • East London Foundation NHS Trust
    • Barts Health NHS Trust
    • Epsom and St Helier University Hospitals NHS Trust
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  18. Bob


    England (south coast)
    Although overall physical function was not significantly improved in the NOD study, some individual patients did improve. (Details below.) But if NHS clinical centres have been shown not to have efficacy at improving overall physical function, I wonder what therapeutic claims are permitted.

    The relevant percentage for significant improvements in both fatigue and physical function is 25% for the NOD study, compared with Maudsley's claim of 50-75%.

    These are the details re individual improvements in the published NOD paper:

    "About 74% (620 of 834) of patients had a decreased Chalder Fatigue score at follow-up and 64% (534 of 834) had improved by >2 points (our definition of a clinically useful improvement). In contrast, only 50% (416 of 834) of patients had an increased SF-36 physical function score at follow-up and only 16% (131 of 834) had improved by >22 points. In total, 14% (120 of 834) had clinically useful improvements on both scales."

    But this has since been officially corrected, and I think the corrected text should probably read as follows (but don't quote me, because I might be mistaken):

    "About 74% (620 of 834) of patients had a decreased Chalder Fatigue score at follow-up and 64% (534 of 834) had improved by >2 points (our definition of a clinically useful improvement). In contrast, only 50% (416 of 834) of patients had an increased SF-36 physical function score at follow-up and only 29% (### of 834) had improved by >11 points. In total, 25% (### of 834) had clinically useful improvements on both scales."

    (As an aside, this raises the question of how many patients deteriorated substantially in physical function, which I don't recall being discussed in the paper - what a surprise! I've posted some thoughts about this on the relevant thread.)
    Last edited: Feb 18, 2014
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  19. Tom Kindlon

    Tom Kindlon Senior Member

    My latest comment on the PACE Trial cost effectiveness paper uses the information Esther12 found:
  20. Esther12

    Esther12 Senior Member

    So neither Chalder or White's CFS services are cost effective?

    Does Sharpe work for a centre providing a clinical service? Would be pretty funny if the Cost-effectiveness paper found that none of the PI's were providing a cost effective service, but was still presented as being a big success for them.
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