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Chemical Dosh

December 7, 2013


I wrote to Steven’s psychiatrist ahead of yesterday’s six monthly check up, suggesting that now might be a good time to consider reducing Steven’s medication. I was extremely polite and focused on two factors: Steven’s calmness and maturity and his growing weight. I emphasised the first as I know the professionals get a bit twitchy when you suggest that medication may be linked to weight increase – they don’t like it. Steven has been on one type of tablet for seven years and the other for five years and in that time his weight has doubled! Food intake decreased and exercise increased but still his weight has doubled.

The psychiatrist agreed. We’re going to have a three month period of halving the medication and if that goes well, then we’ll look at cutting it out altogether. It would be fantastic to start the new regime tomorrow but I have to bear in mind that this is a tricky time of year for Steven. As well as the usual Christmas anxiety (“Dad – don’t forget a Shirley Bassey DVD for Christmas Day”), there is also the anniversary of Steven going away at the end of the month. This is also a tricky one for the professionals because they don’t like acknowledging that there has been any ongoing trauma caused by the year long unlawful detention. So, we get pushed in the direction of “typical autism anxiety about change” and gloss over the fact that everytime Steven goes out of the door, he seeks reassurance that he is coming back in again. This gets heightened every December and January. Therefore, I’ve decided to leave the medication adjustment to mid January. I’m confident it will be fine. I’m not entirely convinced that the medication has any impact on his mood/anxiety at all. It did to begin with but over time, Steven has become much better at managing his own anxiety.

Yesterday, I heard a story that chilled me. A colleague has an 19 year old son with autism and epilepsy. The family have been trying to get a care package arranged for him for the past 18 months but have got nowhere. A professionals’ meeting was held on Wednesday and the family were informed that because of a couple of incidents at college, they want to section the lad in a mental health assessment and treatment unit. My colleague is, of course, familiar with our story but also the horrendous death of LB at one of these places. She is terrified. Even more so because none of the professionals can give any indication of what might be achieved from this plan.

And there’s the nub. Medication. Assessment & treatment units. They’re about containment. They are warehouses. But they’re dressed up as something else. A glossy pamphlet with absolutely nothing contained within. Nobody it seems in the decision making process has the energy or inclination to consider an alternative way of dealing with the situation other than medicating and containment. I’ve written many times before on this blog – something happens to our young dudes in late teens. An overwhelming tsunami of anxiety. But how about we look at it as a developmental crisis – not a medical model. In Steven’s case, it passed. He came through it, even though it meant he spent a year away from his home and has doubled his weight.

There has to be a better way of supporting our guys through this difficult phase.


From → Social Care

  1. My son has been on many different meds over the years and he is only 14! It just doesn’t feel right to me and I am also keen to wean him off. I hear you about treatment units, shudder.

  2. Assessment & treatment units – it sounds like “carespeak” again……Very worrying if they can’t give people any indication of the outcome. I feel one of the problems is for someone with LD to be taken to one of these places is bound to make them feel insecure and so their behaviour will worsen…..

  3. Kathryn permalink

    I was very interested to read your comments ‘ something happens to our young dudes in late teens’ as both my brothers, who are affected by fragile X, were sectioned and spent time in ATUs in their late 50’s. So I wonder if something happens then too?

  4. Weary Mother permalink

    We know that learning disabled children and their parents are better supported now than in the past, and that our disabled children are better supported than they will be as adults. We older parents know that as our children grew through adolescence the battle to retain safe support became fiercer.

    I did my social work post grad, a mature student, in the early eighties. At this time the old abusive absolutely disgusting learning disability hospitals, or ‘bins’, were being exposed and outed. People placed as babies and children were routinely abused and neglected by staff. I saw ghastly video after video of the most awful degradation of people who’s only sin was to be born different. Now in 2013 we have small abusive and disgusting ‘bins’ and all we parents, young and old, fear them with a very deep fear.

    In the nineties funds were pulled back, As a researcher, I saw a staff nurse make toast and eat the warm smelling buttery toast. watched by learning disabled patients (who had once had parents and a home and warm smelling breakfast) eating a partially defrosted bun. I saw in the same hospital another nurse force feed a very vulnerable patient with roasting hot food and the next spoon of ice cream and laugh, calling the patient ‘old asbestos mouth’. Another area proudly boasted they no longer sugared the huge shared teapot. Over years I saw many many other bad things and all impossible to forget…………

    Now we have hacked back funds. And unsupervised ‘independent’ home support of our adult sons and daughters ,by the inexperienced on ‘zero hour’ wages, is the norm. Our concerns are deterred and deflected as just ignorant over anxious parents re-enforcing dependency by blocking re-ablement.

    But I so fear …………………that if younger parents do not wake up and become energised in the way we were back then, we will all very soon be back with even worse than the big old bins. I fear the next; the huge cheaply built wards of profit maximising poorly staffed concrete warehouses filled with the neglected and the failed re-abled. And no one apart from us will care.

    I don’t want to frighten, I just want to stop this happening.

  5. sparrow permalink

    hI Mark. Hope things go well and that you both have a good xmas and ny in your new home. Meds can be difficult but worth a go seeing how Steven manages without them

  6. Sally permalink

    It sounds like a trial of reducing the meds is well worth a go. I think the problem is often the lack of services and case managers/responsible clinicians. You need an accountable person to be responsible for arranging and coordinating care.
    That means that interventions, whatever they are will have time lines and plans attached to them. Anybody taking meds should be told-or with LD they and their carer should be told:
    why a trial is suggested,
    what it is hoped the meds will do,
    what other things will be in place to help with getting on top of whatever the problem is,
    what the most common side effects are, with the meds suggested.
    Most importantly an idea of time. So, if there are side effects when do they usually settle down? If the meds is going to help,by when should the changes happen-and what sort of changes to look for?
    When will this be reviewed ?

    If there is nobody whose job is to coordinate this, regimes can just drag on and on, with the original reason for starting them forgotten. With ASD and LD its very hard to separate mental illness from the learning disability. It needs great clinical skill.I have seen people who have LD/mental illness who have the most pathetic medication regimes-often with layers of medication being laid on because nobody who sees the person wants to take responsibility for redoing the entire plan.Its dumped on the GPs who often have no LD/psychiatric training worth a damn-and so just carry on with whatever’s there often adding whichever bits and bobs occur to them.

    I am right now under pressure from 2 different services to start my son on an anti depressant,I am desperate for him to better, but feel dreadful about any potential side effects because my son isn’t able to give informed consent. If he feels ill, he will not understand why .And I will be giving him the tablets. I know this is how it is, and he is very distressed right now and this may help, but I am finding it hard to begin the regime and I have dithered for a week. I have had 2 rather nasty lecturing phone calls already. Soon the services will lose patience with me and I will be left alone with the problem. What to do?
    Weary mother I am afraid of the bins and bays coming back too. Yes, there are times when somebody its so distressed/disturbed that they can’t stay at home..But no good if nothing actually happens once they are in.And the staff, cheapest and least qualified and screened possible-are often terrible.
    This week I have read the comments by the Cornish Ukip bloke in favor of forcible abortion of pregnancies when the foetus is disabled,on the grounds that otherwise society will have to pay for the disabled children.They reelected him after he said that.And Boris’ dud cornflakes speech.Seems to me the terrible services our children get are the bottom of the barrel because they won’t earn money you see, they’re a drain on society.

    • Weary Mother permalink

      Mark and Sally

      The issue in this blog is whether to/how to best medicate our sons and daughters?. A very difficult one, for just coshing their fear and anxiety does not take away the cause. Also mental health services in this country can be very poor and too many use the cheapest drugs; drugs with nasty side effects which can just replace one misery with another. Re the old abusive bins, the first resort for an easy life for bad/lazy staff was a twice a day spoonful of largactil for even the most benign and not a bit troublesome patient.

      • Sally permalink

        Weary mother,yes!
        I know how wonderful psychoactive drugs can be. The new neuroleptics or mood stabilisers helped hundreds of thousands of people who otherwise were terribly ill, losing cognitive ground with every episode and condemned to lives of wretchedness. However! The old style buckets- of -largactil use was criminal. I think we have to try to establish what’s going on for our children. If my son had schizophrenia, I’d be yelling for the neuroleptics. For anxiety/acting out/unhappiness, its more difficult. Will the drug help? Will it help enough for him to settle down enough to hopefully be able to get by until maturity/circumstances come to his aid?Or are they just suggesting this because anything else would take up their time?
        In our Borough there certainly isn’t any therapy to help. CAMHS “don’t do” autism. There’s is no named social worker,(done away with that!) so nobody who might have enough of an understanding of the person to make some good suggestions.
        There’s often a terrible pressure to sort things out before he is expelled/barred/wrecks what looked like a promising rare friendship.
        My son can’t give consent.Even in a simple way. He is spoken about by the clinicians as if he’s a pet.Nobody has ever said that he might be distressed by the side effects but me. And when I do, the response makes me feel like someone who over indulges their dog. Oh, dear that sounds a bit bitter.
        I can’t imagine how its been for Steven to have doubled his weight.

  7. Kay permalink

    Bit random, this, but it caught my eye… you know how Hillingdon wanted to export Steven to Wales? Well, a Welsh authority is claiming it is are needing to export ‘service users’ OUT of Wales. Talk about making a living by stealing one another’s washing….

  8. Ms jose smits permalink

    Here is another story. A young man in Dublin, who has lived in his independent home with support workers for some years, was taken away, put in an assessment centre, given medication against his will to keep him calm and is threatened now to be put in a residential institution. All against his wil and of his mother. Please contact me on this case

  9. Weary Mother permalink

    Mark and Sally

    I so agree that the best new psychotropic drugs have transformed lives. someone very close to me could not do the very demanding job that they do without them. But even the best drug comes at some degree of cost to the individual. The cheapest forms of these drugs can be are shockingly awful in effect, useful only in damping down the individual and the episodes. The reason that many people ‘choose’ to become ill rather than take them.
    One of the outcomes of a long working life in health and social care has been seeing the best and the worst. I have seen great compassion and skill, but I have also had also to stand against outraged psychiatrists and nurses who have brought patients to their right of appeal against detention unconscious, and/or barely able to stand for the tremors brought about by side effects.

    Sorry again, for there is no intention to frighten but only to advise; become clued up about the medication offered to your family member, and if medication is required ask, keep asking and keep on asking ………………………………for the best.

    • Sally permalink

      I think you are being realistic, not frightening for the sake of it. Does always seem to come down to having to remind those in authority that this is a person they have before them !

  10. anonymous permalink

    CCHR is where you need to look and understand.

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