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Pills, Bills & Arseaches

August 23, 2014

Shattered from Cowley calling base.

It’s four months since we started to reduce Steven’s medication; three months since we stopped the anti-psychotics completely. I did reintroduce a miniscule dose for a week whilst Steven struggled to deal with the death of his mother. The consequences of stopping them have confirmed the thoughts I had all the time Steven was taking them – they weren’t having any positive benefit at all. His anxiety, which stems from his autism condition is exactly the same pre, during and post medication. An unexpected change is still likely to induce a meltdown and the nature of the meltdowns hasn’t altered at all. In the first two months Steven lost over 4 stone in weight. Disappointingly, that has levelled out and although his weight is still dropping, it is just the odd pound or two per week (and sometimes goes up again). The one downside from stopping the meds is the lack of sleep. The natural, ebullient Steven has returned and I’d forgotten how pre-meds, he needed so little sleep. This week, we got 1 1/2 hours on Wednesday night, four hours on Thursday night and an hour last night. I only had one client at work this morning but I cancelled the session as I knew I was in no fit state to counsel someone. The lack of sleep doesnt seem to effect Steven – he’s been as bouncy and Tiggerlike as usual today. I’m on my knees. I went back to bed this morning after the support worker arrived at 7am and slept until 10.45am. But it doesn’t feel anywhere near enough.

It makes me question again, why the hell did he go on medication in the first place. It was towards the end of 2007 and he was struggling with the impending end of his schooldays. He had become pre-occupied with all the other students that had left in the years before and Steven had convincved himself that they’d all died. “Dad – don’t want to die when Moorcroft is all finished”. The anxiety of this developmental crisis continued and eventually, the GP and pyschologist put him on rhisperidone. It was a small dose and although it had an immediate calming effect, it didn’t last long. When Steven went into the Unit in 2009, they doubled the dose within days of his admission and he’s been on the same heavy dose until May this year. But nobody has ever diagnosed a mental health problem with Steven – quite the contrary. When he has his six monthly check ups with the psychiatrist, the doctor makes a point in his reports of pointing out the lack of mental health symptoms. That didn’t stop Hillingdon wanting to use a mental health section to get their way and move him to the hospital in Wales.

Since 2010, I’ve learned how common drugging autistic people is and how LAs will use the Mental Health Act to trump all other legislation and get their own way. They refuse to provide a decent care package for the person in their own home/community – and instead, send them off to an assessment and treatment unit or psychiatric unit – put them under section –  drug them to the eyeballs and leave them there to rot. Problem solved. Except they’ve created a total illusion and used what is meant to be a supportive piece of legislation to add credence to their illusion. I break out in a cold sweat when I think of the task ahead for the #LBBill and how we address the abuse of the MHA. The latest stats on why people are still trapped in ATUs cites “clinical reasons” as the main reason for the lack of discharge dates and planning. This seems like a convenient catch all to me.

Yesterday, an announcment was made by Langland securities of its plan to build a hospital in Wales (there’s irony). The USP of the bid is that it will be an autism specific hospital; and will cater for up to 100 patients, employing 400 staff. The report is here:

Look at those pictures. Read the blurb (“in symmetry with the local environment”). Is that really what’s needed? No, surely not. It looks like another Winterbourne View to me. The brilliant Nicola Bartzis has been trying to do some deep diving into the place and it’s like trying to grip sand. The Health company who will run the facility, Earlswood Healthcare are registered at the same address as Langland Securities. The spokesperson for Earlswood Healthcare is one Andrea Dishman. In 2012, Andrea was the spokesperson for The Trevor Price Partnership who had an identical bid to build a residential placement on the site refused. Hospital? Residential? It’s all the same to the money men. Also in the equation are a company called The Options Group, who run a residential school for the autistic on the same site. You can bet your bottom dollar that behind all this is a private equity firm with links to big pharma.

It’s the complete antithesis of #LBBill. Despite the gloss, it’s an institution. Despite the spin, it is not about keeping it local. Jobs perhaps may be local but we all know that if it gets the go ahead, people with autism from across the country will be sent there. It stinks. Let’s create a mental health problem out of some of the most vulnerable people in our society, so the arsewipe Fat Cats can trouser shed loads of money.

Everyone. Please everyone. Sign up for the #LBBill. Because very soon, they will be more of the Earlswoods of this world, and it will be too late to stop them.


From → Social Care

  1. Jayne Knight permalink

    It freaked me out when I saw it. Pretty close to where I live. How horrible is that? I’m objection gas loudly as I can. Of course it’s private money jumping on the bandwagon and living off the backs of people with disabilities again. On the subject if drugs. If they were left to it they would co I ue to experiment. Where has this been done in history? Of course they would. So sorry you are do tired mark. That is the real here not all their bollicks. That’s what you need help with.

  2. Jayne Knight permalink

    Bollicks… A new one!

    • I thought that was the Lidl version of Horlicks

      • Jayne knight permalink

        I need to go to specsavers. I struggle to see what I’m writing, often with dramatic effect. Like the joke.yes how can you retain your humour when you are so knackered.

  3. Jayne Knight permalink

    Oh God that reads so badly! Lol

    • Pauline Thomas permalink

      Mark how you can still have a sense of humour on so little sleep is amazing (Horlicks). I am still chuckling at the Alma Cogan joke.

      Seriously though it is appalling that people are still trying to make money off the backs of very vulnerable people. Wales was one of the places where London boroughs sent most of their troubled children.(Out of sight and out of mind). Has nothing been learned? Like you say this facility will not be used for Welsh people only. It will be another out of sight place. I like the way the PR is emphasing the fact that 400 jobs will be available to locals. That is the same approach that Tesco uses when it wants to build another store in an area that does not want one.

      Our loved ones are being used as experimental fodder. How many of them consent to taking anti-pyschotic medication? How many can accurately explain how these drugs make them feel?. How many pyschiatrists explain to the parents/carers what sort of side effects to expect? The people on medication have to be seriously ill before anyone takes any notice. The suffering some of these people endure is heartbreaking. I saw a TV programme some time ago which documented the search for a cure for polio. Who did they finally experiment on? An institution for mentally handicapped children. The programme maker said that it would not be allowed to happen today. Really? These drugs may weaken the bones. weaken the immune system. make them pyschotic, and damage liver and kidney function. How easy is it for staff looking after people with LD and who are taking these drugs to actually have the time and expertise to monitor for side effects?

  4. Kay permalink

    Totally with you on the lack of reason to medicate. I asked a behavioural coordinator from the NAS who came to support plan for my son if drugs were necessary in any case and she categorically said that no they weren’t except perhaps as a short term solution until proper planning is in place. We went through hell resisting Respiridone in the face of no alternative decent support because I knew they were wrong because of his grief and would not be a lasting solution….18 months of intense meltdowns night and day with my son’s grief after his father died meant all the previous management techniques were insufficient…but I knew what we needed and refused to give in. Excluding Aspartame and additives from food, balancing sugar levels while eliminating Candida from his gut so he didnt crave sugar, keeping him well hydrated with plenty of water and calm with mint tea, limiting dairy and gluten and researching and giving high quality supplements [expensive but they have allowed me to add the cost into his living expenses for his financial assessment after I pointed out the cost saving to health] and discovering an amazing calming Ayurvedic supplement “Holy Basil” [ non sedating and non addictive] which we used to deal with the meltdowns… it created a proactive result in that he knew he didnt have to panic because it worked instantly…have all come together to calm his brain and help us find the space to adjust his lifestyle to almost completely stop any meltdowns. Sleep has still been an issue but just lately he has been walking a lot more..using buses rather than the car…probably walking a couple of miles a day…and I have noticed he is going to bed before midnight and ready to sleep and staying asleep. Phew! He is happy at last! 🙂

    • Jayne knight permalink

      Very interesting Kay. I’m glad that is working out for him

  5. Tracie permalink

    I have to disagree, if my ASD Son wasn’t medicated he would be in a residential school in Blackpool now. He needed medication for his extreme anxiety and ADHD, he was taken off all his meds two years ago to introduce them back slowly and change one of the meds; it was a disaster and he became very challenging and violent and almost ended up in A Blackpool residential school.

    His new medication has been the making of him, he’s calm, can reason, and a pleasure to be with. He has come so far due to having medication as without it he was a total mess.

  6. Shirley Buckley permalink

    I am allowed to publish this. The Official Solicitor, acting as Martin’s litigation friend, asked for ajudicial review to over rule three decisions that Martin was NOT sectionable. In the end he went into the Unit voluntarily (ambulances and police cars waiting outside if he didn’t agree). He has epilepsy which is not a mental health problem. He didn’t even have his emergency pack with meds and protocols in it with him. No one had the least idea what epilepsy was, assessments said autistic, the unit was part of the Ridgway Trust, and guess where he finished up – a residential care home in WALES belonging to an investment company (which is very short of cash). Mr Justice Charles Vice President of the CoP ordered in 2008 2011 and this July that it is in his best interest to stay there. He also stated that I was wrong to state all Martin’s problems stemmed from his Lennox Gastaut syndrome epilepsy. There was a penal notice put on me if I influenced Martin. The home costs £2400 a week. The LA have over ruled my EPA, and made themselves the appointee and are now taking £78 of his benefits to pay towards his residential fees, although hi is there under continuing care. We were in the Court of Protection from 2006 to 2008, again in 2011, and then again on 18 July. I live in Solihull Martin is only allowed home for three hours every six weeks not enough staff and the carers are not allowed to discuss Martin with me. In the judgment of 18 July this year he states THE PROSPECT OF PROCEEDINGS WHICH WOULD BE DIRECTED TO LIMITING THE CONTACT SHE CAN HAVE WITH THE CARERS AND /OR HER SON MAY WELL BE SOMETHING WHICH NEITHER SHE NOR HER SON WISH FOR………..THE POSITION THEREFOR IS THAT THE LA HAVE INDICATED TO ME THAT THEY WILL INVESTIGATE SUCH MATTERS.. This is the Court of Protection and I am already guilty!!!!!!!! Sorry this is so long.

    • Jayne knight permalink

      Your situation is just dreadful. I gave read the papers you sent me. Maybe you could do a blog Shirley on the LlBill site so more people aware. I know you have spent so much money fighting this and you are an older person who finds it very difficult to travel. Just so very unfair again. Well more than unfair. I feel your situation needs to be brought out in the open as well.

  7. Jackandn permalink

    Another thing that you face is it seems that Autism is now officially being treated more as a mental health issue rather than anything else. Recently I’ve myself have tried to get a diagnosis of Asperges syndrome and instead of seeing some kind of specialist in Autism I was instead seen by a mental health nurse (needless to say I was unsuccessful of getting a diagnosis). I also work in care and have found a number of autistic people i support have now been moved to be supported by the mental health side of social services rather than the learning difficulties side. There seems to be some kind of movement at a national level to change autism into a mental health condition in itself rather than a learning difficulty / developmental disorder. Does anyone else know if this is happening where they live or am I in some kind of strange bubble?

  8. Shirley Buckley permalink

    Jackandn No you are not in a bubble I am seeing this happen again and again. Its easier to contain people under the MHA . Ive experienced the Court of Protection doeverything in their power to have my son sectioned although he has no mental healthproblems. Try googling autism and the Mental Health Act

  9. Su Evans permalink

    My 16 year old son is a pupil at the Options Group school that you mention. The first that I knew about the plans for the new hospital thing were when a friend put the link to the newspaper article about it on Facebook. My son has been in 52 week residential placement at this school very happily for 7 years and I am frankly terrified at what lies ahead for him. I want him to stay near home but there’s very little available in our area..

    • Rebel Witch permalink

      Very few people knew about it – Langland kept it all VERY quiet. Don’t believe the rubbish about “public consultation” – their version of public consultation was to send out a letter giving 2 working days notice of a “public meeting” that was held in the next county.

  10. Yesterday, an announcment was made by Langland securities of its plan to build a hospital in Wales (there’s irony).

    If you’re thinking of Claire it’s not really all that ironic, because this place is in Wrexham which is in north-east Wales, which is 130 miles along windy two-lane roads from Swansea. Still closer than Sussex, but not by all that much in travel time. It would have the advantage of maybe having access to Welsh-speaking staff, if the English company behind this could be bothered to provide them.

    Just noticed that they’re called Earlswood Healthcare — I wonder if they have any connection to the old Earlswood hospital in Surrey, one of those notorious long-stay institutions for “mental defectants” whose best-known inmates were the two Bowes-Lyon sisters?

    • Rebel Witch permalink

      The site isn’t in Wrexham, it’s on the corner of the coast road and Hafod y Ddol Lane between Greenfield and Glan y Don (the proposed site is opposite Aberkhan Rugs / The Duke of Lancaster ship).

  11. Rebel Witch permalink

    I know nothing, really, about autism, however, I’m deeply suspicious of any medical practitioner who hands out pills too readily. I hope that you are able to find a solution that makes Stephen happy.

    The “austism hospital” applied for by Langland Securities (which is a property development company, not a healthcare company) that you mention is very familar to me. Their proposed development is not in anyone’s interests for too many reasons to set out here and it’s a danger to the residents of the existing school for autistic people, the local residents and people travelling along the A548 coast road (the site is opposite the Duke of Lancaster (old Funship) at Llanerch y mor) and on the old golf course (formerly Kinsale Hall park) off Hafod y Ddol Lane because of the traffic and public aspect of the proposed development.

    Two years ago the people behind Langland applied for permission to build residential units for autistic people amid lodges that would be rented out to the public – which didn’t appear to be a particularly sensible proposition. They waxed lyrical about how they were doing this for the benefit of autistic people, however, I sincerely doubt whether, even if they build a facility anywhere, that Langland and the people behind it would keep the facility open if it weren’t profitable.

    Your article also raises the spectre of people being “dumped” at the facility – it’s an evil thing to do to send someone with special needs so far away from the people who really love them.

    They’re also promising between 200 and 400 jobs (and talking as if the “hospital” already has the go ahead – it doesn’t) – this is the same thing that they promised to the people of Barnsley 7 years ago (Google: Earlswood hospital/Shortwood hospital Barnsley) – the development site is still a bare brownfield site with nothing on it and certainly not a single job. It’s also for sale.

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