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.
The least that will happen is that your notes will be marked that you are uncooperative and ‘refused’ treatment. By this simple method, every NHS person you meet thereafter is likely to be wary of you, or even downright prejudiced against you, and you will go to the back of the queue for everything you ask for, and any time you turn up at A&E.
Furthermore, even if you say you will go along with the treatment even though you do not hold out much hope that it is of any use, you can then be listed as ‘treatment resistant’, by which ploy the ‘therapists’ and their ‘treatment’ are absolved of responsibility when you fail to improve.
Another favourite patient dissing habit is to say that you ‘deny’ having such and such a symptom, rather than that you don’t have it: anything to make the patient look bad.
The patient really cannot win, any more than they could going up against the Mafia: You cannot refuse.
(Recently, I tried to endure yet another gastroscopy without anaesthetic. I’ve managed this several times before, but this time I could not stop my stomach flinching against the scope in a way that was likely to be doing damage, so I had to signal them to stop. This was logged as a refusal, despite me having been told to do this if there was a problem, at the start of the procedure.)
In the worst case scenario – if your reputation is particularly bad, from trying too hard to get help to get better – any hint of a ‘refusal’ can be used as a pretext for having you sectioned in order to make you take the ‘treatment’. This actually happened to me even though I had previously organised, on my own instigation, CBT with a Kings’ therapist, but my local PCT had refused to fund it! I had also organised a bed at the then Queens, Romford, inpatient unit, but the PCT had refused to fund that either. After over three years wasted in the local psychiatric services, I was thrown out (though I knew I was too ill), with the advice that I should try the unit at Romford – which had closed down two years before, for lack of patients, due to PCTs not referring out of area! You could not make this stuff up.
So: while, in the ideal world, patients may, without prejudice, exercise a right to refuse, in *this* world. they will be scapegoated for life, and, quite possibly, even worse.
Steve has subsequently shared a bit more with me about his experience as a (wrongly diagnosed) patient in the mental health system: