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Don’t Keep Taking The Tablets

June 13, 2017

Last Friday was the sixth anniversary of Steven’s court case. It was marked by a short film from Rights Info and an article in Community Care magazine.

This week sees another anniversary. This is a more private one and is unlikely to receive the same fanfare. In my eyes though, it is an even more important anniversary than the High Court. I’ve often said myself that Justice Peter Jackson’s ruling saved Steven’s life but Thursday is truly a life or death anniversary.

It will be a year to the day that Steven last took any anti psychotic medication.

He was first prescribed risperidone a month after his 16th birthday. He was 26 when he stopped. At 24 we learned that Steven’s liver was failing and he would almost certainly face his death by middle age. At 16, Steven weighed 13 stone. At the clinic where his liver condition was diagnosed, he weighed 30 stone. It took two years, carefully reducing the dosage by .5mg every three months for eight years of damage to start repairing.

At his last check up, there were good signs that Steven’s liver is repairing itself. At a weigh-in last week, Steven came in at 19 stone. There is still a long way to go but the trajectory is positive.

Clinicians who prescribe anti psychotic medication to learning disabled people will tell you that they are correcting a chemical imbalance. THEY ARE WRONG. They are creating a chemical imbalance.

If you think this is an outrageous claim, think of where your head and emotional space was at when you were 16. And then compare it to where it was at, at 26. It’s two different worlds. Things need to be played out. Maturity needs to take its natural course. Life experiences, good or bad, need to be learned how they’re managed. Medication blocks or supresses these processes.

At 16, Steven was going through “transition”. Teams of new professionals were entering his life. It was the epitome of a coalition of chaos. In the ensuing ten years, Steven has moved home four times. He spent a year in an ATU. His mother died. 90% of the people he knew post 16 are no longer in his life. This is typical for someone with learning disabilities.

I met Steven’s old learning disability nurse last week. He is brilliant. So reassuring and reasonable. One of the noticeable changes in Steven over the last year is that his auditory senses are more sensitive. It takes him longer to string a sentence together. He is completely intolerant of external noise if he is concentrating on something. The other day we were enjoying doing a compilation tape together. Steven was focused and calm. The support worker’s phone rang. Steven tensed up. The support worker started talking on the phone. Within five minutes Steven had thrown the CD case he was reading and I had a cup of orange juice hurled at me.

This is not challenging behaviour. This is the chemical imbalance correcting itself. I’ve been told it can take up to two years for the brain to learn this new way of functioning.

It’s hard. I see Steven struggle with things that the medication would have dumbed down.

It’s called being alive.

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10 Comments
  1. In the world of autism and learning disabled, there is no check on medication, and its side effects are causing terrible quality of lives and early death, and the situation is worsening.

    Antipsychotics are prescribed off label in breach of NICE guidelines which state for short term for aggression.

    Despite this, such medication is often enforced from age 8 by the threat of care orders.

    And once 18, by the Court of Protection deeming the ASD/LD ‘incapable’ and enforcing medication for life in their ‘community living’.

    Only last year the government all party Mental health Taskforce issued a report that encourages such medication as ‘transforming’ care.

    https://finolamoss.wordpress.com/2016/09/08/mental-services-allotted-9-billion-a-year-those-whom-government-wish-to-profit-from-they-first-make-mad/

    A detailed study of the devastating effects of antipsychotics on the mind and body is shown here

    https://finolamoss.wordpress.com/2016/09/25/the-antipsychotic-scandal-effect-on-mind-and-body/

    The terrible history here;
    https://finolamoss.wordpress.com/2016/10/22/harmful-history-of-neuroleptics-antipsychotics/

    Our pharma industry is our third largest, and as autism/LD are now under MHA, they and a person’s presentation of frustration and communication by bad behaviour are treated as symptoms of mental disorders treated by both antipsychotics and antidepressants .

    millions of pounds compensation has already be paid out by Jansen the manufatueres of Rispiridol.
    https://finolamoss.wordpress.com/2015/01/01/the-risperidone-scandal/

    Thank you for showing antipsychotics are not needed, and in fact cause rather than cure a chemical imbalance and terrible physical problems.

    Congrats to you and Stephen for getting off them.

  2. simone aspis permalink

    thanks that is useful to know and noted!

  3. Thank you for writing this article. I’m happy to read that Steven is doing OK without the medication and that his liver is healing.

  4. Your film was so good, and this is good news.
    I wonder if professionals considered how Steven’s mum dying impacted on him.

    The Risperidone given to him was very high dose.
    1mg did help us, as my son became much more tolerant and we could go out a lot more and do new things, but I reduced it to 0.5mg after a few years, and weight normalised.
    I had control over dosage while he was with family, and we had wonderful years.
    I don’t know when it stopped working, or if it caused imbalance after years, but after age 19 problems came back, and it was increased, but was no help. He came off 4mg within weeks, not slowly like Steven – so advice from doctors is different. The weight’s still there.
    I know people with schizophrenia can be on 12mg a day, but with autism and LD it should only ever be low dose.
    Now, with polypharmacy, constipation was a big cause of ‘behaviours’, obvious symptoms rarely acknowledged in our care staff notes. I had to address it with the current GP who’s been brilliant, and that is a powerful relationship, as we’re succeeding. It’s a start.

  5. lisa permalink

    This is brilliant and something I aim for. My son was medication free 19-26.This is a really really really hard one. I absolutely hate giving 30 yr old son risperdal. I also absolutely hate even more, when he self injures.The risperdal stops this. Does anyone, anywhere, know of anything /something else that stops self injury,?

    • Lisa, Lorazepam is prn, so it’s better than daily tablets. It’s only given when needed, if there’s severe anxiety or agitation.
      You’re supposed to use it only for short periods as it can be addictive, but believe me, we’ve had periods when he doesn’t need it at all.
      But when this sort of disturbance or overwhelming distress happens, we need help.

      Others might use it as chemical restraint, but you’d know when to use it.
      Try it.

      Like Mark and others, I wouldn’t want tablets – not the way they are in polypharmacy with high doses with no evidence they do any good. But like you, there are times when I need relief for him, and I see Lorazepam bring relief.

      Or Propranolol which reduces a fast heartbeat. Except it produced asthma as a side effect, so ask for Atenolol.

  6. I’m sorry to write again..
    I just read articles on Lorazepam on Finola Moss’s site, and totally agree that it doesn’t work for people always and has oppositional effects, so can makes things worse.
    I’ve seen that sometimes, most times not.
    I wasn’t being casual about trying it – it just saved us in some situations. I’d love not to use it.

    Propranolol wasn’t the answer either. I just read of it on Temple Grandin’s website and asked for it.

    The real horror is not addressing normal needs. As I mother I’d die for my son, but the smile that appears after the anxiety has died down, gives us a break, and we do something nice and turn a sad day into a good day. He doesn’t forget he was distressed though, as he still needs something addressed.

    A meaningful and busy life is mostly what my son needs, and he knows life should be a lot better than this.
    I agree with Finola that those with autism and LD are deeply emotional, affected by others’ states – anxious and dealing with sensory issues. They can see how selfish others are.

    They need the 3 things talked about by academics and clinicians: hope, opportunity, sense of agency. Which we all know.
    All 3 for us are leading to minimal Lorazepam use, but if factors are beyond my control occasionally, I use it.
    So far, i map out pretty much every activity, but professionals need to ensure he gets the things we succeed with.

    We’re leading the way, using the right language.
    The good guys (pros) know this. Few staff are intelligent enough to understand behaviour – and a little knowledge is a dangerous thing, so I refer equally to others’ behaviours if they use that language, as they twig that.

  7. Pauline Thomas permalink

    The anti-epileptic medication my son was prescribed for 25 years was the culprit that instigated his downward spiral into his psychosis. A psychosis that has completely changed him I fear now forever. There is no light at the end of the tunnel for him or us and constant changing of medication has become a complete nightmare. He has become a pariah, shunned by his peer group in case he hits them Discussed and fretted about by the people who care for him. often in earshot, so making him feel even more like he is a waste of space. I despair at it all.

    The awful truth is that it is well documented that taking anti-epileptic medication for years can cause psychosis in people with a learning disability. Why are there not more research into this and why do the clinicians not tell us this?

    I go on support sites for people taking the medication that my son is taking. (Amisulpride, Pregabalin and Eslicarbazepine) and the experiences of the people who can articulate the way the drugs effect them gives me a little insight to what is happening to my son, because he has not got the sort of language skills to accurately tell me how the medication is making him feel. I have to do this, much to the annoyance of his psychiatrist/leading LD clinician, because otherwise I am always second guessing what sort effects are making him so angry, tired and miserable.

    Drugging people with LD into a stupor instead of trying to find out the cause of their distress is as bad has chaining them to a wall. The bad old days have not completely gone away, just replaced by something new.

    • 5 years ago, I was told that two anti-psychotics (old and new) at the same time were okay. I was terrified. We later got it down to one, still on a high dose, and withdrawal effects past a point are now really scary.
      Discussed within earshot I observe too, as (most) people are just stupid. Experts only pop up briefly leaving instructions people won’t follow, but they know parent expertise is sidelined.

  8. It is now much worse than the bad old days, as now consumers/pharma cows are being created for profit.

    The drug industry controls the research and regulators like NICE/CQC have no teeth and are ignored as is the oath of’ do no harm’.

    Worse still medication is enforced on most behind closed doors by court orders and family cut out of care again in the name of profit.

    And no one is doing anything about this unspeakable suffering and death of our most vulnerable who have no voice.

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