The Iron Gate

Here’s Stephen Andrade’s story, written by his mother, Leo.

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Just before he was 16, Stephen went to a residential school in Norfolk. Two years. It did not work as it did not have the services to provide for Stephen’s needs.

After two years, a multi disciplinary team comprising the doctors, the school and  Islington social services decided Stephen should go to the dreadful hospital St. Andrews. In Northampton. He was there two years. Steven became withdrawn and became a shell of the boy that we knew and love.

Then after much campaigning he was moved to a lower secure hospital in Clacton on sea, Colchester.

He has been at the Clacton Unit for almost 15 months. It was only meant to be a short term measure for assessment.

Here is a film  I took on my camera last year when I took Stephen’s younger brother to visit him at the Unit. he wasn’t allowed into the Unit and Stephen wasn’t allowed out. They hadn’t seen each other for two years.

There is no sign of Stephen returning back home.

Since he’s been at Clacton and being held there under the mental health act , it has been added one more year to his detention. The mental health section ends this June. I fear it will just be extended, probably for another year? In the meetings about Stephen, discharge is never discussed.

Stephen is having daily incidents and self harming head injuries.
Currently I am trying to get the medical team at the Unit to look into Stephen’s head where there’s this huge bump with skin. I fear it could be a haematoma. They say it’s not.

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I fear for my son’s life. No exaggerating

And I see no turning back time.

I wish I have never agreed to send my son away in the first place. Not just to St. Andrews to begin with but to the residential school also. Because if I had not, my beautiful smiley boy would be here at home and he would not have changed from a beautiful handsome happy smiley boy to one with very sad empty eyes that he is today.

It’s as if he has lost his soul.

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Stephen’s story was going to end there but Leo reported that in the past week things have taken another sinister turn. Unable to get anywhere with the Responsible Clinician, Leo made contact with the respected psychologist, PC and the plan was for Dr C to carry out an assessment on Stephen, a second opinion.

Here’s the email Leo received from the hospital:

Dear Leo,

Further to discussions with Dr D I need to advise that we are unable to provide access to any records or have discussions with Dr C in relation to your son.  All patients are protected by the Data Protection Act and clinical discussions can only be held with professionals and family/carers who are directly involved in his care.  I would therefore request that your request for Dr C’s involvement is re-directed to the CCG (Islington), who will then be able to ascertain the need, if any, for her involvement and in what professional capacity.  Once this has been established, Islington will need to forward us their request for her involvement and reasons why to justify any professional discussions to take place.

As per Tom’s email below, it is evident that the local team have worked hard in trying to find a suitable placement for S and there have been several assessments conducted at the Unit.  It is hoped that a suitable provider will be found in the near future to ensure a safe and sustainable discharge from the Unit.

I hope this helps clarify your request

We’ll end with Leo’s own words:

So I did call CCG.  They told me to call social services.

Why?  Why do these people hide behind the MHA and data protection ?

Surely as my son’s mother I have the right to get him help?

What are they so afraid of?
Why can’t they be open, and say we have nothing to hide?

Why use data protection , to stop me helping my son?
It’s my son’s human rights to have a second or third or whatever many options we wish. If Dr C can help my son why not let her ?

My son ‘s human rights are violated every day. And where is that data protection then?

Where is his protection when an alleged carer kicked him on his lower back?

Where is his data protection when he has gone to general hospital dozens of times with head injuries?

So I ask myself who is this data protection actually protecting ?
It is certainly not my son.

Is it wrong of me, to want to get my child the best care possible?

38 thoughts on “The Iron Gate

  1. Of course not. This is forcing you into a corner where the only escape is via legal action which is protracted and far too complex and expensive for most families. To none will they sell justice, but to few will they provide it, who cannot afford to pay for it out of pocket.

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  2. These stories are heart breaking is there an acion group on facebook i can join? I have a young child with complex special needs. I want to help

    Liked by 1 person

  3. This is so wrong – have you thought about doing a crowd funding appeal to get legal aid? I am sure people would be happy to help out. If you had good legal representation I am sure things would be different

    Liked by 1 person

  4. That video reminds me of the Disney film Dumbo, where the imprisoned mother has to give her son a cuddle by putting her trunk through the bars of her prison. The only difference is that in your case it is the son who is in prison. Since when did anyone think it was right to put people into prison without a fair and open trial, for the crime of being born with a disability?

    Liked by 5 people

  5. Have the hospital applied for deprivation of liberties for you son, this is a legal requirement if they are taking away his human rights. You should have been informed of this and involved in the process.
    You can take this to the court of human rights and they will support your son.
    No member of the care team has the right to be abusive to your son, put a complaint in, they will be duty bond to take this seriously and investigate, and inform you of findings.
    Good luck

    Liked by 1 person

  6. Shameful, to see those 2 boys separated by the iron gate. Yes, prisoners have more rights. Do the feelings and attachments of people with disabilities count for nothing at all? One thing I hate hearing is the wide spread idea that people with autism are somehow emotionally different, cold, incapable of attachment, social disorder etc. Even on an otherwise excellent little film clip on the Economist recently, the first researcher said that an infant with autism will not attach to their carer but to an inanimate object, like a toy car. This is a totally superficial and undifferentiated observation, with dangerous consequences for our different children. Social pragmatics and communication may be different but our children love like everybody else and are attached like every human being to the people who love them, their families. What a terrible thing to do, to keep 2 brothers apart like this. Society cares about the effect on children of prisoners of seeing their family member detained. And our children, who cares about them and their siblings?

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    • Yes, it seems prisoners who commit crimes have more rights and freedoms than individuals in mental health settings. I would seriously question why his brother was not allowed to visit. Surely they must have a safe room somewhere or why can Stephen not go on home visits? I hope the family have the strength to keep on fighting for theirs and Stephens rights.

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    • It seems the attitude from the govt regarding disabled and chronically ill (even terminal) that they are disposable if they are not capable of working, has infected all parts of the system. (It is close to the Aktion T4 of the Nazis pre-WWII that sought to rid society of the “useless eaters”.) The values of basic human rightsfor all seem to have been torn up.

      These closed assessment centres always seem to be hidden, and for good reason – the poor souls in them are just income, not people, and abuse seems to be endemic. It is heartbreaking. I wonder if there is a system for visitors like the custody suite visitors in the police station – the “official visitors” can turn up any time, anywhere and must be given full access. If we turn away from these campaigns, we are simply allowing the degrading treatment to become accepted and then extended to the next group of expensive, sorry “troubled”, people needing care and support from society. If we don’t defend the Human Rights of those who are subject to draconian MH orders,we are handing all of our HR’s over to the abusers.

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  7. What a heartbreaking story. One makes decisions for all the right reasons and then when it turns out they didn’t have the outcome you hoped for, you’re trapped. Surely Stephen and his family have a right to seek further medical or psychiatric opinion. How can his health improve if they’ve not even completed the assessment (seeing as he’s still in an assessment unit) and they cannot pursue appropriate treatment until they have. It’s outrageous, a deprivation of liberty that seems far from being in Stephen’s best interests.

    Liked by 1 person

  8. Nothing with the word protection in it is for the person receiving services. In service plans it’s not a very nice word. Sending all the love I can to you and all the sadness here in these 7 days of action.

    Liked by 1 person

  9. Of course it’s not wrong to want the best for your son – there would be something wrong if you didn’t! The system that calls itself a caring one should be ashamed of itself; it is from personal experience that I speak so do not feel you are alone. As far as the Mental Capacity Act is concerned it is, as has been proven, NOT ‘fit for purpose’, It does little to empower such disabled individuals; rather it gives the main thrust of power directly to local authorities.

    They cannot hide behind the Data Protection Act – particularly if the person concerned has been able to give some measure of informed permission for others to see the information. Even if they cannot give informed permission, then a capacity assessment under the MCA has to be undertaken; besides which an Independent Mental Capacity Advocate (IMCA) or other such Advocate has a legal right to access.

    The legal process is indeed a daunting one; it calls for tenacity, and bloody-mindedness, coupled with a desire to front out the overwhelming arrogance of those who purport to act in the ‘best interests’ of the individual concerned. And while it is expensive, it is possible to get legal aid in the name of the disabled individual; so perseverance may be needed (something I know may be in short supply when you’ve got the daily task of worrying about your son or daughter).

    It seems to me that the idea of the Welfare Deputyships (as under the MCA) should be given greater importance; stop the wishy washy woollymindedness coming from the Court of Protection that says ‘they aren’t necessary’. The facts speak for themselves.

    Liked by 1 person

  10. Have you got an independent advocate for your son whom is NOT attached to the hospital/unit? Most have advocates that serve everyone who resides there, but I question whether they are actually acting in the best interests of the detained patients or the hospital/unit. A totally independent Mental Health Advocate (IMHA) who has a very good knowledge and understanding of The Mental Health Act 1983 is what you need if you don’t have one already. He/she will be able to guide you through all the loop holes in there. Also have you got your local MP involved? If not I would recommend doing so. Good luck. I hope you can get your son home soon xx

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    • Yes, it’s always best to have a totally independent advocate, although you as mother are a permanent advocate anyway.
      And discharge planning is supposed to happen as soon as a person’s sectioned.

      Also, you can get an independent second opinion, as I did, so I don’t know why you can’t. I chose a psychiatrist who was from the NHS, and there is a second opinion doctor process as stipulated by the Mental Health Act, who may not be as independent as one you would choose yourself.
      Also, there should be a family room somewhere, in case the unit isn’t safe enough for your youngest son. That meeting at the gate isn’t good enough, especially after not seeing each other for two years, as there’s no dignity in the way that was done.

      Liked by 1 person

  11. Heartbreaking and inhuman. Hope he has an effective IMHA (Independent Mental Health Advocate) which he has a legal right to. There is also the legal right to appeal against the MHA section. His next of kin can challenge the section. Not all A&T units are bad, and sometimes people need hospital care. But this is a totally unacceptable way to treat anyone.

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  12. Thank you all for your comments. First I am overwhelmed by all the lovely comments. Thank you.

    So I will answer some questions.
    1 they the hospital does not have a family room. And much less a room where I can visit Stephen with Joshy. They simply saying no to visitors younger then 16. Before Stephen went there they told me Joshy would be allowed to visit. As we are very close family. The boys adore each other, but as soon Stephen went in Josh was never allowed.
    Stephen does not have capacity so he can’t agree or disagree with decision making.

    We have a solicitor.

    The Dr we have to go see Stephen is not called dr C
    Sorry a misspelled mistake. It’s Dr Pheobe Calwell. A very highly trained and expert in autism, she does not work for NHS, she is private.
    I was asked by social worker if they had to pay for Dr Calwell Bevause if so then gnat was one more problem said no. I was paying. I would borrow the money if I have to to get dr Calldwell to go visit a treat my son, see for Stephen to have so many self harm in issues sometimes it’s to do with pain as Dr Caldwell so explained to me, truth is I knew that, I have been asking for 3 years, to get him seen by specialist , CPAs always say ah we will see what we can do. But I guess it’s easier to drug him pun him full of antipsychotic drugs then go do a simple eye test, for Irlen glases as dr Caldwell suggests. She also says he could have headaches stomachache. All questions and answers I myself and have requested for. None came. They lie to you give you platitudes so you go way quietly.
    Psychiatrists hate when parents go In and suggest or give them ideas, one such psychiatrist told me I was an obnoxious little lady who knows nothing about autism. Well ladies gents you don’t want to know what I told him, I called him an obnoxious little F….G man who knew less then I did, and knew nothing about my beautiful son.

    We are hoping we can get legal aid under Stephens name.

    Anyway thank you so much for the wonderful support. God bless you all. Leo.

    Liked by 2 people

    • Hello Leo. What a terrible thing. I’ve just had a thought, have you contacted your local MP about your situation to see what they could do ? Look at the website “they work for you ” if you are not sure who that is. All the very best.

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      • Hi Andrea. Yes my MP is Jeramy Corbyn. And he has been very supportive. But the trouble is he contacts is Islington and they tell him all the s…t. They make me look studied in front of him. As they prefer make me a bad person to complain and appear to our MP incompetent.
        Thank you. X.

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  13. So so sad for your family,they are negligent your son by not getting his head seen by a dr and hospital,terrible treatment .good luck and hope and pray you can be a family together.

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  14. I have been following and signing/ sharing all the petitions for people held in ATUs up and down the country. Having supported children with autism, I am both disgusted and appalled that people with autism are being treated this way.

    On 28th April Parliament is hosting a 3 hour debate on autism. Don’t miss this important opportunity to make your voice heard at ‘The Too Much Information’ debate by telling your story to your MP (if you have not done so already) and persuade them to push for mor Government support for autism.

    https://act.autism.org.uk/ea-action/action?ea.client.id=10&ea.campaign.id=49942

    Liked by 1 person

  15. Steven can have as many medical opinions as he likes, it is his right as a person. As for his head injury that needs to be seen by a proper consultant and again, he can have as many opinions as he wants.
    There is something vastly wrong going on and it needs to be stopped as Steven is suffering mentally as well as physically and someone or something is doing this to him.
    Have you got a solicitor who is supporting you and Steven? Steven is entitled to legal advice and as his parent you are his next of kin, not anyone else.
    I pray that Steven will get the help he needs in the very near future and that he can be placed in a facility near to home so that he can have visitors most days and learn about his family and those younger than him. Xx

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  16. This is exactly the same as what is happening to my son and he is at that same hospital; it’s been almost two years and I do not know what is happening to him. We have no contact since last autumn as he’d rather not use phone time which eats in to his console game time. He is on a number of medications but I have no idea what is happening to him – they do CBT which doesn’t help his PDA dx one bit and he has learnt to agree with everything they put to him in those sessions just to get them off his back. The last two times I spoke to him on the phone he was more desperate than ever to leave. I am convinced that when he turns 18 this Autumn that he will simply be transferred to another 52 week facility for adults – he is becoming increasingly institutionalised after a string of awful schools forced upon by the SS and LA.
    I have no contact with them now – I do not trust them one bit – they have split my family apart and I want to be left alone to bring up my younger child after years of serious interrogation before the PDA dx. What can one do ????????
    I feel so powerless. His dad visits him every other Saturday – the light has gone out of my son as well. We send cards and presents via his father. We want him to be released but they keep putting him down to a level 2 so that he can’t leave the grounds for visits.
    We will ask for him to be released this summer but I am not hopeful that this will be granted. I don’t know what else can be done.
    I got labelled as a ‘bad’ parent in order to justify taking him away in the first place. I reported that I was struggling to manage on my own and that’s where the horrific chain of events started six years ago, being forced to send my son away and going to an endless round of meetings.
    His father and i separated but are still friends – he has a solicitor and we are taking the LA and SS / schools to court for various awful treatments of my son – it takes so long to build each case –
    It was agreed in an independent tribunal two years ago that my sons ‘human rights have been violated’, however there was also decision to take no action on this.
    I don’t know what we can do to get him out – does anyone have any advice ? I have no say at all but his father, who maintains visits every other weekend and phone contact, has some minuscule say – I am in a position to give him my home with his dad as carer if we can ever get him released – does anyone have any advice ???

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    • Wow what a situation so well known to me and to so many others. St. Andrews is a ahithole place.
      How dare they stop you seeing your son. They tried with me a few times. Well no way. I would not let them.
      It happened and I went went public

      Listen can you get In Touch with me or Mark ? Please. Let’s put our heads together lets work together. We are taking an action against different people

      It’s Leo here. Stephen’s mum. The iron gate boy mum.

      email me. leosammas@icloud.com

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