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Shrink Wrapped

October 4, 2014

This post is inspired by Sara Ryan’s post yesterday about the Psychiatry of Intellectual Disability Conference.

I have no idea why Steven goes to see a psychiatrist three times a year. We get an appointment letter about three weeks beforehand and Steven dutifully goes off with his support workers for a 10 minute appointment.

Steven has never been diagnosed as having a mental illness. In fact, all the post appointment reports, remark that there was no sign of any mental health problem.

I don’t get to see the reports unless I ask for them. They are a closed communication between the psychiatrist, the GP and social services. They always follow the same format. They start with Steven’s physical presentation and comment that he is well turned out and clearly looks after himself. We then get a paragraph about sleep; a paragraph about behavior and a conclusion about medication. Thank you. See you in four months.

Was Steven mentally I’ll in 2007 when he was first prescribed rhisperidone? I don’t think so. He was having a developmental crisis triggered by the impending leaving school. In hindsight, I think he was being quite prophetic. Our experience with adult services has been complete hell and has caused much mental distress to all of us.

What about 2010? There was a whole team of psychiatrists involved then, doing umpteen mental capacity assessments on Steven. But all of them sailing past the obvious that their decisions were causing such distress for Steven.

And since 2010, Steven clearly experiences some trauma from being kept away from his home for a year and whatever he encountered in the Unit. But we’ve never been able to get any of the professionals to recognize that trauma because obviously they were completely implicit in causing it.

So, back to the start. What is the point of psychiatry for the learning disabled? Clearly, people with learning disabilities can be as prone to mental illness as the rest of the population. But it seems to me, that even without a mental health diagnosis, many people with a learning disability find themselves caught up in the mental health system. I’ve never read anything that satisfactorily explains why this happens.

One of the aims of #LBBill is to remove autism and learning disability from the mental health act. I suspect this will be the most contentious part of the Bill because so many people have a huge investment in keeping it there (for all the wrong reasons). It might stop the contrivance of the MHA where people suddenly find themselves under a mental health section in order to keep them in a hospital or an assessment or treatment unit. Only this week,at a fringe meeting at the Conservative party conference, Jeremy Hunt said that the majority of people were in units for “clinical reasons” and subsequently, moving them on was difficult. For what its worth, I think that’s bollocks.

So, can anyone answer my question – why does having a learning disability seem to automatically earn you a one way, lifelong, ticket to a psychiatrist?

From → Social Care

  1. Jobs for the boys?

  2. Shirley Buckley permalink

    Power nothing else except power.As soon as the MHA and sectioning and psychiatrists are involved, there is total power over the individual. Again and again Martin has been diagnosed as autistic or LD so he can be sectioned. He has epilepsy and epilepsy does not come under the MHA. Sometime I will let you have Mr Justice Charles opinion on sectioning etc. The LBBill is absolutely right to demand that autism and LD do not come under the MHA, which is very clear in its diagnoses. I say again nothing else except unsullied power. Im on my crusade again about this.

    • Weary Mother permalink

      The old disgraced LD bins were all controlled by psychiatrists and old school ‘nurses’. Some have only been shut in the last decade or so. New ones are opening, I understand!!! (sarcasm alert) There are still lots of LD psychiatrists from this era still employed and or looking for customers. All the people in these bad old bins were on drug regimes whether they needed them or not. Old habits/powers die hard.

  3. Lisa permalink

    I swear it is because the professionals dont know what else to do so a chemical straight jacket shuts people up. When a child is diagnosed all that is offered is Respite and/or Medication. Oh and a leaflet about the useless NAS, who are autistic in their own thinking. Nothing else. No Therapy, Nothing. Nothing at all. Then placed in a special school and left to fester . That’s it.
    Medication is then dished out as adults who are rebelling against the crucial lack of everything they never received.

  4. simone aspis permalink

    It’s easier to blame the disabled person’s behaviour rather than the cause of it! No institutionalised social system is going to blame itself for how disabled people behave – I was fortunate – I had an ACE social worker who did not defend the system and understood my behaviour. I managed to escape the mental health system – because being a special school survivor – I was in danger of being in long stay institutions starting of with L-Arche and other so called therapatic communities – I had to stick to my guns about wanting to attend a mainstream college, get back into mainstream life and wanted to live at home….. That is why I said in previous post on the LBBill that no one should be compelled to attend a segregated institution of any sort – I personally do not want to make it harder – but to ban the practice all together – I want to live in a state that doe snot have social institutions to control disabled people. As soon as a court process is in place then there is a presumption that there is a need for such institutions for some disabled people – as soon as there is criteria for who is in or out of their local community then all disabled peoples rights to live independently (with or without support) in the community is at risk

  5. Sally permalink

    There is a screaming needs for mental health services which can cater for dual diagnoses-that is,mental illness AND autism/learning disability.
    Whether its the very complex assessment needed to separate one from the other, treatment-inpatient or outpatient ,or follow up, someone with LD/autism as well as a mental illness will need more skilled work and a greater level of involvement.
    For example, a person who has a mental illness and recovers is often able to notice the signs that they are relapsing and to seek treatment again.. Someone with LD/ASD may not be able to do that, so you need regular reviews especially as nowadays the people are less likely to be in contact with other services where the workers might notice signs they are unwell and alert their Drs for them, such as a day centre.
    I quite see your points but I I can say I worked in mental health fro many years and people with autism were ,I have to say,often dreaded and avoided rather than pursued. Why? Because when they were well there was nowhere for them to be referred back to and so they were stuck on the case load.
    An autistic person might not be, say, psychotic any more, but they would still be vulnerable, still need help from a team-and good luck trying to interest learning disability servces in doing that.Often they would sit around the clinic in the day or go to the day centre for people with mental illness-because it was warm, safe ,and interesting and LD services were closed.
    Could you not just write to the psychiatrist and ask what the sessions are to achieve?Are they a leftover from when Steven was on medication and so needed monitoring? Are they to check his mental state post medication? The Dr should be able to tell you.

    • Pauline Thomas permalink

      My son has epilepsy. I should say he did have epilepsy because he has not had a seizure since 2008. The trauma of getting him off his medication has been a 10 month ordeal that reduces me to such terrible spells of weeping that sometimes I feel I cannot do this anymore. However I cannot abandon my son. We still have a long way to go before he is off them completely and hopefully he will be better.. He lives now in a world of his own, occasionally taking part in family life but preferring to be in his own head.

      His current psychiatrist who is employed by the health trust that manages the LD services in our area has been seeing him for 7 years. He does not like us and we do not have much faith in him either. He has demonstrated that he does not listen to our concerns by mismanaging the decrease of his medication. The two drugs that my son has been on to manage his epilepsy are also given to people with bi-polar. One of them is an enzyme inducer. They are mood enhancers. They have weakened his bones. He has osteoporosis. They also deplete some of his white blood cells making him prone to fungal diseases. It is called leucopenia. These drugs also can have behavourial side effects, aggression,psychosis and schizophrenia. My son has been on varying mixtures of these drugs for the last 25 years. He had his first fit when he was 17 after spending 3 months in hospital recovering from an hip operation. He was then the sunniest natured person you could wish to meet. In hindsight and if we had been given all these warnings on the possible side effects of these drugs I know we would have suggested that the odd seizure was preferable to these awful side effects which have ruined his quality of life. We feel we have let him down dreadfully. He had no choice.

      I believe his behavour began to go downhill when the changes to his day services were taking place, I also believe this was happening to many of his peer group in our LA too. My FOI to the health trust confirmed the rise in numbers being referred to psychologists at this time. No one bothered to investigate. Easier to ignore it than to acknowledge it or to take responibility for it. Easier to medicate them than to give them back their quality of life. Pyschiatrists who are medicating people who cannot verbalise accurately what these drugs are doing to them and how they are making them feel must be guided by the people who know them and love them and not be so arrogant as to think they know best.

      • Sally permalink

        I think you are right. If they thought your son would have a lot of future fits and so needed the medication and you thought he would not, surely they could have agreed to a trial period. If he had X fits or over in Y time, very well, its time for the medication. If not, not. If the situation changed, you could agree to reassess.

        The problem is if there are no support services, if LD services are not helping, then mental health get not just people who are ill at the time but people with problematic behavior associated with their autism or learning disability.I have sat in CAHMS begging for help to be told “He isn’t mentally ill and we don’t do autism. ” OK, fine.Who does?” “Nobody.” “Well then, can you help? ” “We don’t do autism.”

        Think of being a psych reg at the local A and E. This is what happens. Police and /or distraught parents come in with someone who is autistic and is in a crisis-such as they have done something which is very dangerous for them or others. Police don’t want to prosecute-yet the person really can’t go home with things the way they are, as least not that night.
        What to do? LD services, if involved at all are tucked up in bed. A psychiatric hospital is not the best place-but better than a police cell.The next day, the LD worker who may show up will reveal that there really isnt much help avaliable apart from being sent a long way away. Or a parenting class.There is no day centre. There is no team who will come to the house and try to help work out what the behavior is about and what can be done. There are no residential options locally.
        The psych reg can only make the best recision for the person to keep them safe at the time.They don’t want them on the ward either.Every night there are so many more people who need beds then there are beds.And if someone whioch autism goes on a ward until things are sorted out with LD services they’ll be there forever, because LD services are terrible!
        I am sick to death of difficult behavior by someone with autism being seen as a startling unusual thing which knocks services for six. Its pretty standard. Its like services meant to deal with asthma being floored by wheezing.

  6. My problem is not so much with the idea of psychiatric treatment, it is the assumptions that go along with using “mental illness” as a label, and of course the stigma and false assumptions that go along with that label.

    My daughter has a damaged brain – in effect, the result of a stroke. Like many who have strokes, this has affected the speech centres in her brain, so that sometimes communicating is a struggle, especially in difficult situations. Does that make it a “mental” problem rather than a physical one? And should her adaptive idiosyncrasies be labelled “autism”?

    Is it us who have the problem, or the psychiatrists? As with everything else, there must be good ones, who might actually have something useful to contribute – but if they stop at labelling, and treatments/preconceptions that make things worse, how is that supposed to help? Not exactly an exact science, is it? Remover my daughter to an ATU, and her behaviour would deteriorate in seconds. I would like her to be assessed. I would like her to be “treated” – as a human being! Is a terrified and bewildered prisoner “mentally ill” if they react that way? I am not all that familiar with things like schizophrenia or bi-polar disorder but I have the impression that there are treatments that can sometimes make a difference, and restore people to former stability. This doesn’t apply to our charges – they are as they are, and need different kinds of help and support than incarceration and drugs.

    Doctors are intelligent (I am told) and hold certain sets of values. They like to “treat”, and make better. It is sometimes my impression that they are not knowledgeable or particularly interested if their skill set and assumptions don’t “fit” the patient.

  7. Weary Mother permalink

    We are told that high up on the triggers to mental ill health, is inflexible imposed anxiety and extreme powerlessness. Witness the life of adult people with LD, for whom every aspect of their lives, including friendships and relationships depend on subjective vagaries and level of competence of the next new care manager; the annual appraisal and the whims of the current purse holding commissioner………Hell on earth? Not quite…then comes the psychiatric assessment……

    • Pauline Thomas permalink

      So very true Weary Mother. Anyone regardless of their intellectual prowess would be reduced to a miserable wreck if they were denied any autonomy over their lives.

      • Weary Mother permalink

        Paradoxically they call it personalisation………………………… al

  8. Yes, but what is getting to me is the lack of clarity that comes from bandying about labels, or thinking governed by jargon rather than – again – thinking things through. Sure, lack of autonomy, uncertainty, and stress isn’t a recipe for robust mental health. But how much real autonomy do any of us have? Carers don’t have a great deal of it, nor do people in low paid jobs/out of work, but no-one suggests that we should be labelled “mentally ill” as an EXPLANATION, and a psychiatrist the first thing we need.

    The quality of my daughter’s life is not what I would like it to be – but she is pretty happy with it. It is attempts to control it in ways she doesn’t want that raise the stress. It ought to be possible for us to work together with “them”, but that gets less and less possible in these austere times of agendas that don’t overlap much, and cost and spin the bottom line of everything.

    • Pauline Thomas permalink

      Sally times are only austere for us. It is not austere for the ceos of the companies and organisations providing the care services. I use the term ‘care’ loosely.

      • Pauline Thomas permalink

        Oops. I meant to say Liz. I am tired!

  9. Sally permalink

    Its really hard to think things through and work with services because the irrational is trotted out as if it is rational. Its like being in Alice in Wonderland.”We can close the day center and things will be the same or better.” We can have half the workers, but better care”. “You can be assured your child will have expert personal care-with no named worker.””Its up to parents to find workers through budget agencies-and all these workers will be superb, skilled, qualified, motivated..”
    I would not be at all suprised to see Tweedledum and Tweedledee come dancing in half way though yet another assessment.
    I can understand reassessments for transitory conditions, but learning disability/autism is permanent.Its like being constantly assessed to see if your leg is still off.The strain in awful-for parents and young people.

    • Pauline Thomas permalink

      Sally I agree. LD/autism is permanent. Why do they keep changing the goalposts on how much support you need.

  10. Weary Mother permalink

    ….and your leg is still off because you were given a crutch. ……so we will take it away……

    Madness……send for a psychiatrist?

    • Sally permalink

      How about:”We will replace the crutch with brief, solution focused work enabling you to achieve walking independence in a non stick based way.”

  11. Sally permalink

    Mark-I just re read the end of your blog quoting Jeremy Hunt. Hard to put my reaction in a non sweary way.
    “Clinical reasons?” OK.Lets not argue that one first, lets ask-moved where, Mr Hunt? To which faclilities? To which services? When there is no longer a clinical reason for a person to be at a place, why does he think they nevertheless stay?Answer: Because there is nothing to send people back to. Not a local clinic not a visiting support service, not a day centre, not good supported housing, if needed.
    I imagine Mr Hunt lives in London. Would he feel so very good about someone he loves being parked at Land’s End “for clinical reasons?”
    I can just see his faux caring expression when discussing this. Alan Bennett said he looks like an Estate Agent about to show you around a property.Bollocks indeed.

  12. Kay permalink

    My kid has been showing increased anxiety since entering adolescence. It’s known to go with the territory of the underlying condition. The standard response seems to be anti-anxiety and ADHD medications. I would prefer not to go down that route and asked our GP if there was a service, suitable for people with learning/communication disabilities, to which the kid could go to reinforce coping skills and/or learn new ways ways of handling the stress and anxiety.

    No. Flat ‘No’.

    CAMHS is not, by all accounts, a *Health* service, it’s a treatment service for kids who’ve already gone right over the edge. And even they, however florid their problems, will have a long wait to be seen. A kid who is merely veering in the direction of the cliff is of no interest unless and until they actually fall off it. Is it just me, or is it the services, rather than the users, that are mad?

    So here I am, trying to inculcate a version of mindfulness-based stress reduction into my adolescent. For those of you who’ve been through the teenage years with your kids, I probably don’t have to paint a picture of the tensions inherent in any parent trying to help their moody teenager learn those sorts of skills…..

  13. Sally permalink

    I am also surrounded by books for teenagers with ASD and doing a very poor job of home help!
    Our CAHMS don’t have the resources, so they have raised the bar to the point where a young person needs to be in a terrible state of poor mental health to be accepted. Once in, CAHMS are often not set up for people with ASD who will be different in what sort of treatment they need and for how long etc. Most CAHMS don’t do ASD-and its very hard getting your young person in if they have a mental illness and ASD because the habit is to attribute all the sympoms to ASD. That’s why depression is so often missed in this group. Not CAHMS? Well, there are usually one size fits all services which are staffed by people who are not up to handling people with ASD-“well being” services. Ah, and mainstream parenting courses!
    I found it was worth having hysterics at the GP and getting CAHMS to refuse on paper because it was easier then to ask the GP in the light of that refusal to refer my kid to a challenging behaviors unit at a teaching hospital. He goes once a week and gets some CBT and I get help on managing the behavior. The bods there are at least very familiar with ASD so are less likely to give stupid advice or to be shocked.
    Kay I have been at this for 12 years and I still think that there must be a service for children and young people with ASD that I have missed though my stupidity. That one day someone will say: “Why on earth didn’t you take him to X clinic which caters for all aspects of ASD-assessment, managemnt, mental health, counselling etc etc” And I will feel silly.

  14. simone aspis permalink

    Hyi Mark I have left various messages on your answerphone about arranging an opportunity to talk – please ring me on my mobile 07795 142 108 – it will be on silient – so I will need to leave the room if needed to have a chat – 27th oct PM would be great to meet if that is possible at Inclusion London’s offices in Brixton. Looking forward to having a chat with you on the phone. If its off its because I am on the tube – so try again about 45 minus later.


  15. simone aspis permalink

    Forgot to say do not publish the email – its a personal one for you this time

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