Blog: Spoonseeker, "An Offer You Can’t Refuse"

Andy

Andy

Senior Member (Voting rights)
In the previous post about the NICE Guidelines revision, it was reported that Prof Mark Baker of NICE had raised the issue of the right of patients to refuse treatment, in this case with CBT and GET in mind. Steve, who frequently contributes to this blog, left the following response in the comments, pointing out that our system does not in reality allow patients this choice. I think it is – unfortunately – spot on, so I’m giving it a post of its own by airing it again here.

Over to Steve:

It is being rather naïve or even ‘economical with the truth’ to say that patients are at liberty to decline offers of CBT/GET (or any other treatment). In reality, you are being made an offer you *can’t* refuse, whether this is theoretically allowed or not.
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https://spoonseeker.com/2018/01/28/an-offer-you-cant-refuse/
 
Can't read the article but the premise seems correct, refuse and you face loss of or inability to get disability benefits meaning being put out on the streets where we would not survive long (unless we are lucky enough to have generous families who can help us), children kidnapped by the state based on lies and victim blaming and the prevention of progress toward real research and a treatment.
And then they have the gall to say they are not responsible for the consequences of their actions :emoji_face_palm:
 
Reminded me of Derick Wade's response to PACE at the SMC:

Dr Derick Wade, Consultant and Professor in Neurological Rehabilitation and Clinical Director, Enablement Directorate, Oxford Centre for Enablement, said:

“CFS is common, and it is vital to know whether treatments proposed and/or used are safe and are effective. Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any intervention in any condition. The trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence.

“This is a very significant finding. It identifies that one commonly used intervention is not effective (and therefore should not be used), and it confirms the effectiveness of two treatments, and their safety. The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits.

“Research needs to investigate both treatments and factors that increase the risk of developing CFS. However, it is probably more effective to research treatments, and proving a treatment is effective starts to give clues about causative factors.”
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http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/
 
Well; he was from Oxford. And what a fine example of "newspeak" the "Enablement Directorate" is.

With the SMC it is hard to be sure whether it is the grasp of science or language which is unusual.

"The study made the first definitive comparison of various treatments for CFS/ME..."
 
Ensuring that the word reablement is not applicable to people with ME was a key point raised at our table at the NICE workshop.

GOSH (Great Ormond St Hsp) were never able to explain directly to me why their services were referred to as "Rehabilitation" though I raised the question several times. I guess they knew I would outline why that was so inappropriate.

Oh yea my daughter's at the rehab clinic sends the wrong message in SO many ways
 
I have just read the blog at the start of this thread. It is heartbreaking and shocking that patients with physical illnesses are being treated this way when they are wrongly put in a mental health facility. What happened to listening to the patient. Apparently once you get a mental diagnosis, the staff feel they have the right to 'know better'.

I think Nigel Speight's response is important. He is emphasising the importance of getting a correct diagnosis, which we would all agree with, but the important thing he is saying is 'don't ask for treatment'.

I think what he means by this is, don't ask for ME/CFS treatment, because if you do, you are likely to be set on the path of CBT/GET/treatment refusal going on your record.

This is what he says:
I still hold by my advice to stop seeking for “treatment” – it nearly always leads to disappointment, and often leads to problems due to getting into the hands of the wrong professionals.
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Perhaps, at least in the UK at present, it's more productive to seek treatment for individual symptoms - sleep, pain etc. rather than for the overall illness.
 
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