Health: Cognitive Therapy — Question for Short Debate
The Countess of Mar (Crossbench)
My Lords, from my point of view it is wholly appropriate that this subject should be debated at this time and I am grateful to the noble Baroness, Lady Tonge, for her introduction. I declare my interest as chairman of Forward-ME and as patron of several ME charities.
While I recognise that there are some patients with a variety of conditions apart from mental illness—cancer, for example—who might benefit from cognitive behaviour therapy, or CBT, as it is known, I would like to introduce another note of caution. The noble Lord, Lord Rea, has already introduced his. CBT is not the cure for all ills that it is sometimes held up to be. Indeed, it is not, strictly speaking, a treatment at all, since its purpose is to support patients in recognising and managing their symptoms. However, there is a group of chronic illnesses where overwhelming post-exertional fatigue is a major factor, causation is poorly understood, and for which there is no single or comprehensive treatment—CFS/ME, fibromyalgia and irritable bowel syndrome, for example—that do not respond positively to CBT. Patients expect doctors to provide answers, and doctors are, naturally, reluctant to admit defeat. Current advice to doctors is that, after routine tests have failed to point to causation, there is no need for further investigations. Some doctors take the easy route by concluding that the illness must be psychological and that CBT will provide the answer. However, many clinical tests listed in the Canadian criteria do show disease/disorder dysfunction in many bodily systems.
I will deal only with the 240,000-odd CFS/ME sufferers this evening. This is an illness that, according to some researchers, has had several different names in the past; neurasthenia and hysteria are examples. Others researchers have believed since 1934 that it is caused by viruses, other micro-organisms or toxins. Even more confusing is the incidence and severity of symptoms reported by patients. It is not surprising that almost everyone concerned with this illness, be they patient, carer or medical practitioner, is, to some degree, bewildered.
In the face of this bewilderment, in 2004, the Secretary of State for Health and the Welsh Assembly asked NICE to prepare,
"guidance on the assessment, diagnosis, management of adjustment and coping, symptom management, and the use of rehabilitation strategies geared towards optimising functioning and achieving greater independence for adults and children with CFS/ME".
In August 2007, the guideline was published amid a barrage of criticism from the ME community. Why was it criticised? It was because the only "treatments" recommended by NICE on the basis of very limited and strongly criticised scientific evidence were CBT and its twin sister, graded exercise therapy or GET. The quick reference guide to the 300-plus pages of the full guidelines described CBT as:
"An evidence-based psychological therapy that is a collaborative treatment approach. When it is used for CFS/ME, the aim of CBT is to reduce symptoms, disability and distress associated with the condition. The use of CBT does not assume that the symptoms are psychological or 'made up'".
Unfortunately, in the view of a number of professional organisations and researchers working in this field, the evidence-base is not as clear as NICE would have us believe. A statement from ME Research UK asserts that:
"The evidence base consists of only five trials which have a validity score of less than 10. We note that the most recently published RCT on CBT (O'Dowd 2006) states: 'there was, however, no evidence that the treatment restored normal levels of function for the majority of patients'".
The Association for Psychoanalytic Psychotherapy in the NHS states,
"it is highly misleading to state that CBT is the therapy of first choice, since the only relative efficacy RCT quoted in the Guideline (Risdale et al 2001) shows that counselling has better outcomes than CBT".
It goes on to say that:
"This recommendation seriously conflicts with the recommendation that patient choice and preference need to be uppermost in the collaborative approach to care, and the finding that 45% of patients report either being made worse or not helped at all by CBT and, elsewhere, only 7% of patients surveyed report being helped".
"Why is a misleading recommendation being made?".
There is no mention in the NICE guidance of the analysis report in 2004 by the 25% ME Group for Severe Sufferers that was submitted to the GDG of NICE that reported that 93 per cent of respondents found CBT unhelpful.
I could cite a great many more criticisms of the recommendation by NICE for CBT. The recent judicial review did not test the scientific validity of NICE's recommendation for CBT and GET. The statement issued by Professor Littlejohns, NICE clinical and public health director, that the decision,
"means that the NICE guideline is the gold standard for best practice in managing CFS/ME",
is not entirely accurate.
People with ME already bear a great burden of disbelief about the reality of their illness from their closest relatives, their friends, the medical profession and other care professionals they encounter, as well as the community at large. There has been a preponderance of articles on "yuppie flu" in the press and broadcast media; research funding, other than that provided by the ME charities, has been exclusively weighted in favour of the psychosocial as opposed to the biomedical aspects of the illness; and ME patients seem to have to go through a great many more hoops, including CBT, to obtain and retain social security benefits and social care packets, as well private health insurance.
I have a quotation from Health Insurance News UK dated
"Medical Insurance May Not Cover Chronic Fatigue",
it gives a condensed description of ME. It then states:
"This sounds like a physical problem, doesn't it? However, the NICE guidelines suggest that it is a psychiatric condition rather than a physical one.".
It goes on to say:
"Because of the NICE guidelines private health insurance companies are within their right to refuse cover if an applicant's policy does not include psychiatric cover".
I cannot find any confirmation for the extraordinary suggestion that ME is a psychiatric condition in the NICE guidelines. Will the Minister ensure that this misinformation is rapidly withdrawn?
Young people with ME get very little understanding of their predicament from educationalists and social workers. Far too frequently their parents are accused of "perpetuating the child's illness behaviour". This often results in the child being put on the at-risk register, forcibly removed from the family and given medical treatment, including CBT and GET, that commonly does not work. The child is then blamed for the failure. It can then take years for the child to regain any semblance of a normal life. Too many children remain isolated and ignored and living in a twilight world.
I have been dealing with ME sufferers for 17 years and I have never encountered a group of patients who are so maligned. The last straw for them is the requirement that they undertake a course of CBT and/or GET in order to qualify for benefits and private insurance payments. I accept that, in some cases, CBT alone may be beneficial. I suspect that in the old days it would have been called "grin and bear it". However, CBT is rarely offered without GET and ME patients know only too well—and their views are supported by some 4,000 papers on scientific and clinical research—that GET makes their symptoms worse.
The NICE guidelines lay great stress on the importance of shared decision making, working in partnership with the patient and the need for specialist expertise. Unfortunately, because this is a "Cinderella" condition, there are few specialists. Indeed, some of the specialist centres set up following the CMO report in 2002 have had to close because of a lack of funding and expertise. For this reason, "referral out of area" and "choose and book" should be available to all sufferers.
The Department of Health and the World Health Organisation acknowledge that this is not a psychiatric condition. What action is the Minister's department taking to ensure that people with ME are as respected as people with other medical conditions and that they are not forced to accept, as a condition for receipt of benefits and social care, "treatments" such as CBT and GET that, at best, provide no beneficial effects and, at worst, are positively harmful?
I remind the Minister NICE guidelines state:
"Healthcare professionals should be aware that—like all people receiving care in the NHS—people with CFS/ME have the right to refuse or withdraw from any component of their care without this affecting other aspects of their care, or future choices about care".