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The Six Monthly Check Up

July 19, 2016

Sorry. It’s a Groundhog Day post.

Steven has got his half yearly appointment with the psychiatrist on Thursday morning. I completely forgot the last one back in April. It’s a sign of how normal our life is now, and how free we are from professionals, that the last appointment didn’t register with me at all.

I don’t go to the appointments anymore. It’s partly since I got thrown out of the mental capacity assessment by the psychiatrist for “leading Steven” when I was trying to explain to the psychiatrist that Steven doesn’t understand the meaning of the word “better” in its comparative sense. Although, it’s not the same psychiatrist these days, my presence puts Steven at risk from them mis-interpreting him. When I’m around, Steven can always find something to talk about and I know that previous doctors have got intolerant as Steven starts discussing Sybil Fawlty’s wigs with me. So, I write a letter and leave the actual visit to the support workers.

Once again, that question comes up for me – why do people with learning disabilities get lumbered with a psychiatrist when they hit 18? Steven had a paediatrician until he was 16. The he went into that black hole for two years because children services end at 16 and adult services don’t start until 18. And then a month after Steven’s 18th birthday, we received an appointment letter to see a psychiatrist. 8 years on, I still don’t understand why.

I wrote my letter this morning. I mention how calm and settled Steven has been. I mention the massive breakthrough Steven made by finding the language and the insight to spot the triggers for his sensory overload. I ask whether it is time to stop all the anti psychotic medication. For the past six months, we’ve been in the final phase – .5mg once a day. That is so piddling, I’m not convinced it has any effect at all.

I know exactly what the psychiatrist’s post appointment report to the GP will say. Every single one for the last four years has said exactly the same thing. The first paragraph will comment on how nicely Steven is turned out and that his personal hygiene is good. The second paragraph will state that he cannot see any indicators of mental illness. The third and final paragraph will state that “it might be wise” to continue with the medication for the “time being” and to review in six months time. The cut and paste world of risperidone.

Needless to say, Steven cuts straight to the chase in his “why don’t you talk properly” way. I was preparing him for the visit earlier. He went away to think about and came back and asked:

“Steven Neary will talk to Dr T about…..?”

Steven doesn’t get why he has to go there. With the dentist, it’s very clear cut – “Dr F will look at Steven Neary’s teeth and talk about good brushing”.

With the GP, it’s less obvious because Steven’s history has shown him that the GP serves many different functions. The two that spring to Steven’s mind are: “Go and see Dr S and Dr S put a needle in Steven Neary’s arm”, and “Go and see Dr S and Dr S will talk to Steven about chicken pies and massive bellies”.

But he hasn’t got a clue what the psychiatrist will talk about. Probably because most of the language goes right over his head. He talks about “challenging behaviour” – Steven talks about “having my silly head on”.

It was in the psychiatrist’s office that one of my favourite conversations took place:

Psychiatrist: “Have you been out on your community programme this morning Steven?”

Steven: “No. Been swimming”.

One of the support workers talks about “The Gang”. In his eyes, it’s a gang that always has the threat of admittance to an ATU one clinical, bureaucratic decision away. The Gang, amongst others, consists of the psychiatrist and the challenging behaviour experts.

I’ve been putting out a call that instead of labelling people, “People with challenging behaviour”, we change that to “People in deep distress”. I know that might throw a hand grenade into The Gang and might push some inward reflection as to the part they are playing in the deep distress.

But probably not.

More than likely it will lead to a report that comments on the person’s “unkempt presentation”, overflowing logs of recorded challenging behaviour and the suggestion to keep taking the tablets and if nothing changes, “we can always try olanzapine”.

I won’t do an update post after Thursday’s appointment.

You’ve just read it.

From → Social Care

  1. I’ve also never liked the term challenging behaviours as a description of distress behaviours, which are communicating some urgent need.
    Many support workers (not your staff, Mark, as they sound good) might interpret the words challenging and behaviours to suggest a person is just ‘like that’, or tends to behave that way for no good reason.

    For the record, our psychiatrist is better than some of his colleagues who came before – out of 6 people in the team I know 3 are good, and the psychologist is really okay too.
    It’s luck whether you get a truly skilled professional, but I know they definitely exist.

    Of course, Steven sounds quite well and might not need Risperidone, but 0.5mg Risperidone for several years really helped us until one day it made no difference.
    Remember that people with schizoid disorders can be on 16mg.

    • Yes, it was needed once. Or something was – not sure anti psychotics were ever justified. But ten years on, his maturity makes me question their continual usage. And his physical health has suffered as a result of the medication.

  2. Pauline Thomas permalink

    I agree with you Mark, I wonder too if long term anti-psychotics are ever justified.

    My son was on anti-epileptic medication for 25 years. This long term medication did not always stop his seizures (he had on average a fit every 6 – 8 weeks). They did however leave him with osteoporosis and a low white blood count. He was not suffering from any mental illness even though the doctor prescribing this medication was in fact a psychiatrist. The medication in question was carbamazepine and lamotrigine. Both are also prescribed to people with bi-polar. Both are mood enhancers. My son did not need the mood enhancers, he was cheerful, happy kind and patient. These drugs have left my son with a psychosis that apparently needs anti-psychotic medication to cure him. All the drugs he has tried (the list too long to go into) have had side effects that are so debilitating that I wonder if he will ever get back to his old self. He has temper tantrums, lack of any inhibitions, inability to concentrate on any task for long and long moments of standing still just dreaming. The latest one makes him over salivate and sleepy, and I suspect makes him unable to concentrate.

    How you have achieved Steven’s state of self awareness is amazing, although it has come at at cost to your own well being at times. Although like many loving parent when it is right for your loved one it gets right for you too. Or, in the words of Elton John, ‘It’s no sacrifice’.

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