Last week on 6th June 2019 a Tweet struck me deeply; it affected me like very few Tweet’s have before, and as you can imagine for someone working in the disability field that’s saying something. It was a Tweet from Rachel Lucas of Sky News (@RachelSkyNews), who had been doing a piece about NHS inpatient care for people, including children and young people, with mental health conditions, learning disability and/or who are Autistic. Along with the photo at the top of this blog post, this is what she Tweeted…
“This photo is of a parent visiting their autistic teenage child in a hospital in England. Holding hands through a hatch in the door to their room. This is mental health/learning disability/autism inpatient care at the moment. How can this be right? This is heartbreaking.” Rachel Lucas @RachelSkyNews
I saw the image, I read the Tweet, and tears filled my eyes. I imagined that this was my 17-year-old son, James, who is Autistic, has learning disability, and has experienced mental health issues over the past couple of years. My reply back to Rachel demonstrated the state that I was in as I sat in shock at what I had seen…
“There is no rational, reasonable explanation for this. It’s torture; state approved and funded torture. Children being cruelly punished because they are different. Ironic that we see this on the anniversary of #DDay The Nazi regime routinely tortured and killed #Autistics”
Was I being extreme? Was my response an over-reaction? I’m still not sure… What history does tell us is that we are judged as a people by how we treat those who are on the margins, those who society rejects, those who need our support, the most vulnerable.
A little later, as I calmed down a bit (but not by much!), I retweeted Rachel’s Tweet, this time commenting as follows:
“How, for the love of all things good, in a progressive, developed, prosperous nation, can this be allowed to happen. This is a national disgrace; it brings shame on us all. It has to stop. Please Retweet this as much as you can. #MentalHealth #Autism #LearningDisability #Children”
I’m still angry, and make no apologies for going on a bit of a rant about this, but there is no place, no place at all in a civilised society to treat people like this. If an institution treated animals the way that is described below, they would be closed down and those responsible prosecuted for cruelty.
Rachel has been researching into this issue for a while, see the article she wrote for Sky News here: https://news.sky.com/story/line-18-victorian-social-care-system-is-failing-the-vulnerable-11540609 (Warning, it’s a heartbreaking read)
Her article shines a light on the atrocities that are being committed all the time to children and young people, as well as adults, by a system that is clearly not fit for purpose. Rachel quotes one Mum who says, “My Autistic son deserves a life, but he’s locked up.” before highlighting that her son has been held in secure residential care for 17 years! That’s as long as James has been alive. 16% of people admitted to these so-called ‘Assessment and Treatment Units’ (ATU’s), which at best are supposed to be short-term assessment locations, have been there for over 10 years!
The views of families seem to be ignored by a system that seemingly can’t cope, clearly doesn’t provide appropriate staff training, but that has ultimate power over the futures of those who are referred into these secure units.
As Rachel points out in her article, challenging behaviour is often used as a reason for institutionalising young people with mental health issues, learning disability and/or who are Autistic;
“Normally, challenging behaviour is a sign of an unmet need. And that misunderstanding is what campaigners argue leads to the overuse of restraint, sometimes face down, seclusion and sedation. One family we spoke to told us how their son was banging his head against a wall. Rather than assessing what may be the reason for this behaviour, staff restrained and medicated him.
He is non-verbal and was unable to communicate that he was suffering from a severe ear infection. That is not challenging behaviour, he was in pain. What is obvious is that using restrictive interventions, like restraint, can in fact lead to the deterioration of someone’s well-being and mental health and can have a long-lasting impact.”
People are dying in these institutions, 40 over the past 2½ years alone, nine under the age of 35-years-old. This is happening in the United Kingdom, in 2019. Here is a link to the Sky News report that Rachel refers to:
https://news.sky.com/story/40-people-died-in-barbaric-secure-hospitals-the-government-pledged-would-close-11540038
UPDATE (19-06-19): Just also found this recent article in The Guardian:
https://www.theguardian.com/commentisfree/2019/may/23/connor-sparrowhawk-torture-care-restraint-segregation
I’m reminded of what Jesus taught us when he spoke about the sheep and the goats in Matthew 25 (see the full passage at the end of this article):
“’I was hungry. But you gave me nothing to eat. I was thirsty. But you gave me nothing to drink. I was a stranger. But you did not invite me in. I needed clothes. But you did not give me any. I was sick and in prison. But you did not take care of me.’
“They also will answer, ‘Lord, when did we see you hungry or thirsty and not help you? When did we see you as a stranger or needing clothes or sick or in prison and not help you?’ “He will reply, ‘What I’m about to tell you is true. Anything you didn’t do for one of the least important of these, you didn’t do for me.’ ‘Then they will go away to be punished forever.’”
The challenge of these verses is not just for those who are responsible for this outrage; those who institutionalise and cause harm to the most vulnerable in our society; those who perpetuate what should have been left behind in the Victorian asylums. The challenge is for us as the church too; to shine a light on what is happening, to stand up for those who struggle to stand up for themselves. As Psalm 82 encourages us:
“Stand up for the weak… Protect the rights of people who are poor or treated badly.”
Psalm 82:3 (NIrV)
This could happen to any of our children and it’s happening on our watch. As Rachel points out in her article, “The shameful part to the story is that everyone involved knows what needs to happen but years after government commitments, words have not been turned into actions.”
Let’s all work hard to make them accountable for what has happened, and to compel them to end this inexcusable suffering now. We cannot, we must now, permit this to continue.
You can find out how to write to your Member of Parliament, your local Councillors, etc. via: www.writetothem.com
To complain to the NHS, follow this link: https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/
You can also write to the Local Government and Social Care Ombudsman here:
https://www.lgo.org.uk
Contact the press, spread the word, let’s make a big noise about this… Let’s make a stand for those who can’t stand up for themselves. Let our voices shake up this nation and bring an end to this… As I Tweeted at the time:
“How, for the love of all things good, in a progressive, developed, prosperous nation, can this be allowed to happen. This is a national disgrace; it brings shame on us all. It has to stop.”
Are you with me?
Mark
13th June 2019
Image rights and some content rights: © Sky News
The Sheep and the Goats
“The Son of Man will come in all his glory. All the angels will come with him. Then he will sit in glory on his throne. All the nations will be gathered in front of him. He will separate the people into two groups. He will be like a shepherd who separates the sheep from the goats. He will put the sheep to his right and the goats to his left.
“Then the King will speak to those on his right. He will say, ‘My Father has blessed you. Come and take what is yours. It is the kingdom prepared for you since the world was created. I was hungry. And you gave me something to eat. I was thirsty. And you gave me something to drink. I was a stranger. And you invited me in. I needed clothes. And you gave them to me. I was sick. And you took care of me. I was in prison. And you came to visit me.’
“Then the people who have done what is right will answer him. ‘Lord,’ they will ask, ‘when did we see you hungry and feed you? When did we see you thirsty and give you something to drink? When did we see you as a stranger and invite you in? When did we see you needing clothes and give them to you? When did we see you sick or in prison and go to visit you?’
“The King will reply, ‘What I’m about to tell you is true. Anything you did for one of the least important of these brothers and sisters of mine, you did for me.’ “Then he will say to those on his left, ‘You are cursed! Go away from me into the fire that burns forever. It has been prepared for the devil and his angels. I was hungry. But you gave me nothing to eat. I was thirsty. But you gave me nothing to drink. I was a stranger. But you did not invite me in. I needed clothes. But you did not give me any. I was sick and in prison. But you did not take care of me.’
“They also will answer, ‘Lord, when did we see you hungry or thirsty and not help you? When did we see you as a stranger or needing clothes or sick or in prison and not help you?’ “He will reply, ‘What I’m about to tell you is true. Anything you didn’t do for one of the least important of these, you didn’t do for me.’ “Then they will go away to be punished forever. But those who have done what is right will receive eternal life.” Matthew 25:31-45 (NIrV)
New International Reader’s Version (NIRV)
Copyright © 1995, 1996, 1998, 2014 by Biblica, Inc.®. Used by permission. All rights reserved worldwide.
The Additional Needs Blogfather 
Restraint is horrible. Our daughter, a mental health nurse, hated being involved with restraint when working on an admissions ward. Sometimes a person would be admitted, held by half a dozen police. It was scary for the staff and the person. Sometimes she thought the restraint was used before other stuff was tried – it is crazy on that kind of ward. But years after admission – one wonders why nothing better is done. The story of the guy with the ear infection you include here is very telling. I think the restraint thing is even worse in some other countries. (Our daughter now works with troubled children/teens as one of the mental health trained staff at a centre where they do drama, and other arts based activities, so has left these extreme settings behind.)
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Thank you MariHoward, I couldn’t agree more. Thanks for sharing your daughter’s experience too.
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Hi Mark
So glad you are writing and publishing on this subject.
My own son, Louis, a skilled horseman, an artist, a great walker and swimmer, is also locked up in a Learning Disability Unit. Louis is now 32, he was profoundly cognitively impaired by meningitis as a three day old baby. This affects his speech, reasoning and understanding, though he has great memory and a different kind of logic.
I have relied on sharing his care all his life, with care institutions: first weekly boarding school, then care homes. When his former care home shut last year, Louis was evicted – yes, literally! – and sent 250 miles away from home in Scotland, to Hartlepool, to the same care organisation as Whorlton Hall, whose abuse featured on Panorama recently.
Louis was traumatised by the loss of everything familiar to him. He used all his power of communication to protest and to seek help. I visited weekly staying at a B&B nearby, for a few days at a time, taking Louis out for walks, training staff in how to related to him, but in between my visits he became desperate. That is called ‘challenging behaviour’.
The power imbalance is so great! They used physical and chemical restraint. There were always several of them and only one of him and he is a fighter. They had a riot shield. He came back traumatised.
He came back to a placement set up by the local authority to fail. Their motivation was entirely financial: it lasted seven weeks.
Louis’ admission to the LDAU offered him, in my eyes, a level of safety that was a relief for him and me, but it has been harsh. For four months he was locked into his room, eighteen feet by twelve, in conditions like those you describe.
Since January I have driven a round trip of a hundred miles almost-daily, to support him, to speak his language with him, to be alongside him, to hear his stories, absorb his anger, his hurt, loss, puzzlement, to paint, write ‘letters’ to his friends. I have taken him out for a long walk every day, we go swimming, visit cafes. I have given training to staff in communication, in Louis’ life history. We transformed his room by decorating it with his paintings, photographs, cards from friends. These were his communication walls, he could take people by the hand to show him what he was saying. We had seven sheets of A4 as a ‘calendar’, the days of the week, so he could orientate himself in time.
Yesterday, Infection Control (a man in a suit) came to the ward and said these pictures constituted a risk and they all had to come down. Where was this man when he was needed to insist on the removal of faeces from the ceiling, where Louis had thrown it in desperation in his early weeks? He was not there.
Now Louis has been robbed of his communication tool, his history, his own choice of decorations.
The system is cruel and impersonal. Only human contact breaks through. Louis is now familiar and most ward staff are confident around him. He is used to the ward routines, he spends much of his time in communal areas. I still visit 5 days out of 7, but he is getting settled enough for me to turn more energy into planning his future care.
I seek to purchase a property in which to create a small community – Louis plus 2 others. It needs to replicate the same routines and stable staff team as has worked well for Louis on the ward, with the benefit of wider community wrapping around it for familiarity and meaningful relationship: a weekly gathering over food, homebaking, support for staff and for Louis and his fellow residents.
I am sixty now and need to create something sustainable for years in which I can no longer support Louis as I have done, for the time when I predecease him. I need there to be a wider community who recognise him as their son, who know his stories, speak his language.
Jean Vanier took three men out of the long-stay mental hospital: Philippe, Raphael and Dany. Dany was too difficult and they returned him in the morning. From the house with Raphael and Philippe l’Arche grew.
Last year, Jean Vanier gave me his blessing to call ourselves ‘The Dany Foundation’.
It is difficult, I need support, even simply prayer support and encouragement in this. While Louis is stable, I can get on with the planning, the organising. That I am now free to do.
Every Dany, every Louis, is at the same time utterly himself and at the same carries that divine spark that we Christians call the Christ.
I believe it is a calling of the church today to honour the Christ in these most vulnerable people, to call out the cruelty, to protest on behalf of those like Louis who are tortured, locked up, abused; to accompany them, to let them know that Who they are is most precious; then we need to band together to create solutions that lead to communities that both support them – and at the same time, nourish us, with an eternal presence that binds us together.
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Thank you for sharing your story, Kate, so hard to read but it needs to be seen. As you say, it is the calling on the church to step up and speak out. I’m sure Jesus would have been there in the midst (and am sure that through the Holy Spirit he is!) Standing with you and praying for you and Louis.
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I am with you on this Mark. There is a great injustice being done and it is our duty to advocate for those whose voice is not being heard. Thank you for your blog.
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Thank you! The more of us advocating and raising our voice for people who are struggling to be heard the better.
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