Trouble For Humans

On Monday, myself, Sara, Steve and George are off to Manchester University to talk about the #LBBill as part of their “Human Troubles” strand. It’s going to be a good day, talking about what it is like to be human when you’re forced to inhabit Planet Social Care.

Ironically, today I received a letter notifying us of the date of Steven’s next appointment with the psychiatrist. The process around the notification is fascinating. The psychiatrist doesn’t speak to us directly (outside of an appointment, that is). So, this letter had been sent from the psychiatrist’s secretary to Steven’s GP and she forwarded it on to us. I’ve asked before about this palaver and was told that as Steven is an adult, they cannot communicate with me directly. Which is odd, because we have had letters where the psychiatrist has advised a change of medication but if he won’t inform me directly, then the change isn’t going to happen. I’m reliant on the GP having the foresight to forward the letters on to me. The current letter, in the section titled “Care Plan”, recommends some blood tests at the very hospital where the psychiatrist works. But as he didn’t tell me, it’s taken from 5th September 2014 until today (24th January 2015) to know that’s what he wants. Is that crazy or what? Today’s letter also came with the Psychiatrist’s report of the last appointment in September 2014. It is thoroughly depressing reading.

An innocent bystander, in reading the letter, would have no idea that the letter was about a human being at all. It could be about a lab rat. It might even be a case study copied straight from a textbook. There’s a weird paradox – even though every report we receive takes great pains to point out that the psychiatrist can identify no sign of “mental instability or distress” in Steven, the entire report is medical and presented within a mental health frame. Autism is mentioned, bracketed as (F84.0), together with Severe learning disability (F72.1). So, from the very first paragraph, the human being is lost and replaced by a diagnostic reference number from the DSM.

I could go on but it is so dispiriting. By the time we get to the final paragraph, Steven’s name has been lost completely and he has become “the patient”. This is the final paragraph: “The patient was amiable in his presentation, occasionally spontaneous with his speech, exhibited echolalia, appeared euthymic in mood, but he was also emotionally labile”.

Perhaps I’m being unfair. After all, Steven was being seen by a medical professional in a medical setting (why?). But the report says nothing about the man I share my life with seven days a week. If the report hadn’t mentioned “Steven enjoys his pepperoni pizza Fridays”, I wouldn’t have recognised him at all.

In all probability on Monday, we’ll be discussing ATUs. It’s no wonder people are condemned to these places. The system can’t recognise a human being with autism. It is much more comfortable with a medical specimen.

7 thoughts on “Trouble For Humans”

  1. Thanks Mark as usual for sharing the continued stupidities.. I don’t know how you keep your humour in the face of the ‘not so’ human services. We all know that what works is knowing the person so why would a psychiatrist revert to such stupidities – let alone communicate with Stephen’s carer in such a roundabout way? It defies all sense… Thanks goodness for you, Sara and others who won’t let people get away with it. Keep it up…

    1. I agree with Rosemary. What an utterly stupid time wasting way Steven’s pyschiatrist chooses to run his clinic. You are Steven’s father/carer/protecter and everything else that goes with it and yet you receive his clinical reports secondhand. You know what he likes, dislikes, and how to please him, how to pacify him yet you are not recognised as knowing more about Steven than anybody else involved in his life. Shocking and insulting. Does the pyschiatrist know Steven better than you? Does Steven’s GP know him better than you? Did the staff in the A.T.U. know Steven at all?

      My husband and I do not always see eye to eye with my son’s psychiatrist. We do not believe he explains his reasons for medicating our son the way he does. He did not always choose to tell us how my son’s medication was affecting his general health. However we cannot fault the way he runs his clinic. We always get a copy of any correspondence relating to my son which he sends to the GP or to any hospital consultant. He keeps us in the loop regarding his medical needs That’s how it should be for you.

      There is one other point which you covered in one of your blogs, and which I totally agree with, and that is why people with a learning disability need to see a psychiatrist at all if they are not mentally ill. Do the medical profession expect all people with LD to end up needing to see a psychiatrist? Perhaps they realise that the shocking care people with LD receive from social services after they leave education invariably nudges them into needing medicating to keep them from getting angry. Or in their words ‘challenging’.

  2. Mark you are right . In no way should a psychiatrist be treating someone with autism. The MHA is clear on the criteria, but even so we have the situation where someone with autism can be sectioned which is crazy. My experience with psychiatrists has been interesting, I have some funny stories to tell, but invariably they are unable to see anything except boxes to put people in.

  3. Professional/clinical training modifies people.

    Status and power needy people need to snatch more. Many kind caring intelligent and insightful newbies fight to retain all in the face of professional . The best keep on resisting……and sadly too many of them leave.

    All above happily support similar human values, verbally. But too many will fight to the death to be the ones that define what these values look like. And define choice and care in terms of own profession. I know from direct experience that all professions (even the very best) will close ranks and resist behaviours defined by other professions, far less us and ours. Social work profession does this with most vigour in my long experience ,whilst expressing the opposite in ever evolving exclusive language..

    The best clinicians welcome us and our experience and are not offended by our knowledge and our peer status; they treat us as full and equal human beings..The minority and worst of them do the opposite. Psychiatry has it’s full share of the latter? .

    It is all adds up to a ‘who do think you are world’ of closeted extremes …………extremes and certainties that shred health and happiness and as we know,.. . maims and kills.

  4. It seems to me that an immediate change for the better would be brought about by a simple change in the law allowing you as parent to be named as legal guardian/representative (whatever word they want to choose) of Steven and then all communication would be done directly with you. This is a relatively simple change that if brought in across the board would be extremely helpful and empowering for families of severely disabled adults. It would lend far more weight to the parents opinions, make it far harder to detain the LD adult against their will and would certainly cut down on the needless delays in arranging simple things like medical appointments. This could be extended not just to parents, but to any family member happy to take on the responsibility. It’s time that the powers that be realised that involving family and listening to them is a massive positive.

  5. Thanks for sharing.Being a parent I completely get the points you make. When things work well it can make such a profound difference.We have an appointment at home before college with a respected medical professional tomorrow.A person whom is widely known for going that extra mile and being focused on the individual and their holistic experiences.This is positive all round and can makes life so much more peaceful, harmonious and healthy. Sending best wishes and hope for change

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