An Offer You Can’t Refuse

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:

Another point I didn’t make about the right to refuse, was what happens once you are admitted to a mental health facility: Everyone is supposed to have a ‘care plan’ that they have to agree to follow, but these are more like confessions they try to trick you into signing, than anything designed to help the patient.
 You are supposed to come up with compromise plans of things you can do and things you can’t, but, if you say you can’t do something, they just treat it as non-cooperation, no matter how clearly you explain the reason. Most of the time, in my case, it was because they did not agree that my physical illness was real, so, if I said I couldn’t hoover because it left me gasping for breath, I was refusing treatment — even if I’d been doing it all the time I could get breath.
These ‘care plans’ also get personal about what ‘I agree to do‎.’ They are like what we used to have to do in detentions at school when given ‘lines’ to write as punishment. In my case they stated that I was a hypochondriac, every time. And every time, I wrote on the form that I could not sign because I was not a hypochondriac and signing a false confession would make a liar out of me. Nevertheless, the forms still went forward as ‘evidence’ of my ‘treatment resistance’ and ‘non-cooperation’.
Even if I pushed myself to do an exercise program that I worked out for myself: when I got so far, and then, inevitably, came the crash, all my progress and ‘cooperation’ up to that point, was as nothing, and I was‎ ‘resisting treatment’ all along.
You really can’t win if you are physically ill in a mental unit. Whether you try to cooperate or not, if you are physically ill, you will always end up put down as a trouble-maker when you can’t do the physical things that the actually mentally ill people around you can do.
Your reputation precedes you wherever you go, and as soon as nurses and other staff look at your notes, you are likely to be greeted with a scowl, unless you are very clearly in serious trouble that they can see you aren’t faking or imagining.
Steve goes on to say that things have improved since he got a better GP, which goes to show how important your GP’s attitude can be. The expertise (or otherwise) of GPs concerning ME has been the subject of much of my Twitter feed recently. I may continue that discussion in the next post here…
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