mrspoonseeker blog post, 28 January 2018: 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.

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WAMES’ advisor Dr Nigel Speight comments:

Of course the same applies with knobs on in the case of young people with ME. The parents naturally move heaven and earth trying to get a diagnosis and then “treatment”, often needing several “second opinions”.

When the “treatment” doesn’t work or makes the young person worse the parents are blamed for withdrawing from treatment, which of course is “not acting in their child’s best interests”

I have accumulated c 20 families in the last 5 years who have been taken to Case Conferences for alleged FII (Factitious and Induced Illness, previously Munchausen Syndrome by Proxy)

Of course once social services have arranged a case conference they have to justify their actions so they have to put the child on the Child Protection register, and then of course you have to have a “protection plan” which the parents have to sign up to – it seems as if there is a kind of madness on the part of professionals, rather akin to the Spanish Inquisition (and with similar thin-lipped

Fortunately none of the above cases have succeeded, apart from a case that I lost in Norway, where a brother and sister were removed from their mother and placed in foster care, with mother only allowed to see them 3 times a year

One message to the ME community – stop looking for “treatment”. If there was a cure we would have all have heard of it. Just ask for diagnosis, sympathy and support!

And don’t complain about doctors or social workers unless you are in a very strong position – I have seen several cases of proceedings driven almost certainly by a desire for revenge on the part of professionals.

I have written an abstract on these problems for our Paediatric College meeting in March but unfortunately it was rejected

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