In November of 2017, 35 mental health organizations, led by the Society for Psychotherapy Research (SPR), wrote a position statement to the National Institute for Health and Care Excellence (NICE) calling for revisions to the clinical guidelines for depression in adults. They requested the inclusion of stakeholder involvement to address “significant flaws in methodology, lack of transparency and several inconsistencies” with the existing guideline.
However, an update on the forthcoming guidelines has indicated that these concerns have not been addressed. In response, signatories crafted the Stakeholder Position Statement. They write:
“We maintain our position that this guideline is not fit for purpose and if published will seriously impede the care of millions of people in the UK suffering from depression, potentially even causing clinical harm.”
In the original 2017 statement, stakeholders identified “wide-ranging and fundamental methodological flaws” in the draft. Numerous suggestions for revisions were outlined.
First, they demand that NICE examine clinical trials that include 1 to 2-year follow up data rather than exclusively short-term outcomes. The significance of this inclusion has been recently discussed by other researchers (see MIA report). In addition, the exclusion of relevant trials has resulted in misguided guidelines that favor medical trials over psychological trials as well as certain psychological treatments over others.
“This is not an acceptable scientific stance and creates biases that are based on subjective choices rather than good scientific evidence of treatment effectiveness.”
Another major point of contention with the new guidelines has involved the exclusion of service-user experiences. They argue:
“A full systematic review of primary studies of service user experience is required, employing formal methodology for qualitative synthesis; AND findings from such a review must be incorporated into the broader approach to quantitative review and treatment recommendations rather than being left as a stand-alone section.”
Given that input from service-users regarding their experiences has “at least equal value to quantitative evidence of clinical outcomes,” they note that exclusion of this data is not justified.
Moreover, in accordance with the European Psychiatric Association, cases in which patients experience “persistent depression” need to be grouped together rather than separated. They add,
“In the future NICE also needs to look at whether the overall categorical system of mental disorders really fits with service user experience or whether a more trauma-focused approach would fit service user experience better. In the meantime, the current guideline must at least be in line with the best clinical and research evidence.”
Along with other specific methodological considerations, the coalition strongly suggests that NICE use appropriate methods to examine treatment effects and include an analysis of non-treatment outcomes, such as quality of relationships and the ability to work.
They write:
“The current draft guideline has an extremely narrow focus on symptom outcomes and fails to take into account other aspects of service user experience which have long been called for, such as quality of life, relationships and ability to participate in work, education or society. The guideline scope lists adaptive functioning, carer wellbeing and a range of other outcomes among the list of main outcomes to be considered, and yet the guideline takes no account of these outcomes.”
Although NICE has acknowledged their omissions and misinterpretations in crafting the guideline draft, they did not address the above concerns when the second round of consultation occurred.
“The scope for the third revision does not include any of the concerns detailed in this statement. Instead, NICE proposes to update the existing evidence review and to include new work on ‘patient choice’. It is unclear what body of evidence ‘patient choice’ refers to, but NICE has specified that this does not refer to patient experience (of which there is a significant body of evidence).”
Therefore, this Stakeholder Statement was written to further express the coalition’s view that the current guideline is unfit and risks clinical harm. They emphasize that this cannot be postponed.
“If these serious methodological flaws are not adequately addressed in the guideline, the treatment recommendations cannot be relied on and will be misleading, invalid and impede the care of millions of people in the UK, potentially causing clinical harm.”
They conclude:
“NICE guidelines have a significant influence on UK policy as well as internationally and therefore, publishing this guideline in its current form would have a very damaging impact on service users, services, the health professional work-force, and research practices.”
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Read the full statement here: https://cdn.ymaws.com/www.psychotherapyresearch.org/resource/resmgr/docs/downloads/StakeholderPositionStatement.pdf
Related Webinar from SPR, “Time for a Sea-Change, NICE Guidelines Need a Revised Methodology”: https://vimeo.com/344828465
Since I don’t think that psychiatric “diagnoses” are real diagnoses, I find this article to have a certain “tempest in a teapot” quality. Unfortunately, it seems to reinforce the notion that “depression” is a real disease entity unto itself, which leads down countless blind alleys in the search for “treatments”, while ignoring the real issues in dealing with depressed moods.
Depression is a feeling, though it may come from anemia or another deficiency or thyroid problems. A symptom of health problems (sometimes.) NOT a disease in itself.
The clinical guidelines do need to be reconsidered, starting with, “Depression will no longer be diagnosed as a disorder.” The rest will be a lot easier once they get that part over with.
steve i have a serious mental health problem….
and i feel most comfort in being with those
that say they have a mental illness…
i don’t think you can change reality just by changing
words….
I actually do think that words define our reality. For instance, if a person is kidnapped and threatened with death, and as a result has moments of intense anxiety that this might happen again, do they have an “anxiety disorder?” Or are they responding pretty normally to a violent and terrifying experience?
I’d say it matters a lot to the victim whether you tell them that their response is a normal reaction or a “disorder” that needs to be “treated.” Having worked with a lot of traumatized people in my career, I’d say that it makes a HUGE difference to have a person think of their reaction as an understandable response to a difficult or impossible situation. The more I was able to have the person understand why they reacted the way they did, the easier it was for them to recognize that the present moment was different and that perhaps a different response in the present is a possible option. Whereas telling someone that they “have a disorder” tells them they SHOULD have reacted differently to the situation and that the fact they are upset about it is a personal failing that needs to be fixed.
Words do matter. A lot. Especially words about who you are and what your behavior and feelings mean.
steve you make good points…
but there is a problem when you
try to rule out biology causing serious mental problems….we still do not know
enough to say that genes have no
effect…..and neuroscience is working
hard on this….words do not stop
people looking…and scientists need
evidence not words…
Hey, I have never said that I “rule out” biology! I’ve always agreed that there are real biological problems that cause problems with moods and behavior. (One such problem is the adverse effects of drugs one is taking, for instance). What I have said and continue to say is that the fact that one FEELS a certain way or ACTS a certain way does not say ANYTHING about why they feel or act that way, and to suggest that simply because someone feels depressed it means they have a problem with their brains is absolutely ridiculous. It’s very much like a person having a pain in their leg and being diagnosed with “leg pain disorder” and to “treat” it by giving drugs to dull the sensation of pain. There could be 50 reasons why a person’s leg is hurting. Let’s suppose they were hit by a car, or stung by a bee, or have a piece of shrapnel in their leg. Is the pain in the leg the problem? Or is it information that leads us to investigate what is going on?
I don’t know why it seems to be so hard for you to see this distinction. No one is denying that physical conditions can cause changes in mood or behavior. What we’re objecting to is the idea that ALL changes in mood are behavior are ALL caused by physical conditions, especially when there is absolutely NO physiological finding to support such a ridiculous assertion.
If you want to believe that you have a genetic condition, you’re welcome to believe that. But there is no scientific evidence showing that there is any genetic basis for depression, and assuming or implying that everyone else who is depressed has a genetic or biological problem is going to be viewed as a problem by most of the people who post here.
And by the way…..after spending millions of dollars and taking up many years in their search for neurological causes of so-called “mental illness” they’ve not found one gene….nada….nothing…..to prove their hypotheses. They waste time and good money on something that isn’t true and never will be true. It’s useless.
but steve how can you say there
is no genetic basis for MY mental
illness…you and i can’t know that yet..
the neuroscientists are working on it…
that is what science is about…not just words…
I can’t say that, and I didn’t say that. I’m saying that no doctor can tell you that your depressed moods and experiences are due to genetics, nor can they say in general (and this is more important) that depression is always or usually due to such genetics, because they don’t know that. They’d be lying to you if they claimed that they did. YOU can make your own observations and believe as you see fit, and I totally support your right to do that for your own situation. It’s when one person starts telling another what THEY should believe that things become dangerous, especially when the person (like a doctor) has a special societal role of translating what is known scientifically for lay people. For a doctor to claim that you or anyone else is suffering from a “genetic predisposition” to depression when they have no way to know if this is true or not is not only dishonest, it should be considered malpractice. Whereas your own assessment of your own situation harms no one and hopefully helps you get a better grasp on how to help yourself to move to a better place. That’s the big difference.
What if words don’t accurately reflect reality?
“Psychological” and “treatment” cannot be conjoined – unless we revise what we mean by treatment and see it as fantasy.
Psychotherapy, in accordance with the root meaning of the words, means to serve soul, not treat it. Serving soul implies letting it rule; it leads, we follow.
By carelessly turning over our symptoms to professional therapists, we have reinforced the grip of professionalism upon psychopathology.
James Hillman
i am depressed….i have a mental illness…
I always wonder when I see you post something like this why you believe this? What proves to you that you have a “mental illness”, other than what you’ve been told by the so-called professionals. I too was very sad and unhappy about what was going on in my life, but I never believed that I had some kind of an illness that I couldn’t do anything about. I still experience ups and downs in my life, but I’m no longer sad and unhappy because I decided to do something about my life situation. And in fact, once I began taking some responsibility for my life by deciding that I wasn’t going to remain where I found myself, my life began changing in many ways. If you could find the courage to empower yourself about what you want to do with your own life and in how you want to think and believe, you just might find that you aren’t so depressed and saddled with a “mental illness”. Just a thought.
It strikes me that when anyone shares something with you to think about you have a tendency to pull back and immediately go to the “I have a mental illness” line. What is so scary about just thinking that perhaps you aren’t mentally ill because you’re sad and unhappy? Why not just try for once, sitting with your discomfort and embracing it, and then allow yourself to think about what was shared without any judgments. Just sit there and quietly look at what the person has shared in an objective manner. You’re not obligated to change your thinking but just try embracing your discomfort and then looking at things objectively.
I usually don’t say anything to anyone that might be seen as coercion or pressure because I believe in free choice to believe what one wants. This is why I dislike psychiatry to vehemently, the system doesn’t allow any true freedom of thought or any dissent. It’s either the system’s way or no way.
But I sense something in you that says to me that you have more to you than you even begin to realize. It’s a shame to me to think that all that might go to waste.
I believe You. That does not mean that your mental illness, or whatever it is, is the property of the psychiatric system. Our pathology belongs to psyche, like our ego belongs to psyche.
I am depressed. My health is poor from long term drug use. Too sick and old to start over.
And I’m lonely. My past will haunt me forever and the shame of being accused for violent crimes I never committed. (What an SMI label is all about.) So close friendships are impossible.
No “mental illness” required. My life just stinks.
I have the right to be depressed for crying out loud!
stephen…you don’t know what i have been thru….
i am not like you….each one of us is different…
I absolutely know that and accept that. But my question remains as to why you fight so hard against anyone offering you another way of seeing your difficulties. And how do you know that you’re not like me? We might be a whole lot more alike than we are different from one another. I suspect that one big difference between us is that I never believed the system when it told me that I was “mentally ill” because I tried to kill myself because I was so miserable from the huge and terrible losses that I suffered in such a short time. I believe that my desire to die had absolutely nothing to do with any “chemical imbalance” in my brain and everything to do with the fact that I was grieving so many great and profound losses in a very short period of time. I was overwhelmed with grief and sadness; I didn’t have any “chemical imbalance” in my brain. And I was never “mentally ill”. Actually, the psychiatrists I was forced to deal with were the ones who seemed to be out of touch with reality. One year to the day of my mother’s burial I was told that my sister had been murdered in New York City. In one fell swoop the two most important people in my life were gone out of my life. By chance, I had an appointment the next day to see a psychiatrist for a diagnosis so that I could apply for therapy concerning my mother’s death. He never once looked at me, scribbled on his little pad of paper as he looked at my chart, and pretty much ignored me completely. He finally asked me, without even looking at me, how I was doing. I said I felt terrible because I’d just learned of my sister’s murder and it felt like my entire world was crashing down around me. He jumped up out of his chair and screamed at me, “That stupid!”. At least he’d finally looked at me. I decided than that if this was the kind of help I was going to receive to help me deal with my grief, that I was not the one with the true problem.
And despite what you state all the time, I still believe that you’re capable of more than just being mentally ill. I believe, for some reason that I can’t put my finger on, that you have talents and abilities that others can benefit from. But I will never try to force you to believe something that you say you can’t believe in.
thanks stephen…