In this video, Alexis discusses five crucial things that must be considered before removing Autism and Learning Disabilities from the Mental Health Act.
In this video, Alexis discusses five crucial things that must be considered before removing Autism and Learning Disabilities from the Mental Health Act.
It is heart breaking to learn that Ayla Haines died miles from her family and home in Llansteffan, Carmarthenshire, in a mental health hospital due to significant failings in care. Ayla was frightened and distressed at being so far from home and she struggled with the noise and commotion of the hospital ward. Moved from one untherapeutic hospital environment to the next, is any wonder that more harm was done than good?
Ayla had the right to know if she was autistic and she should never have been denied a thorough autism assessment. Sadly, autism is still underdiagnosed and misunderstood in women and girls. While autism is not a mental health condition, autistic people can develop separate mental health issues. Often this can stem from a lack of appropriate support and autism can compound the difficulties that people experience in mental health settings. Ayla’s case has highlighted the need for improved female autism diagnosis, as well as crisis prevention and support, and the need for localised specialist learning disability and autism mental health services.
In relation to Ayla’s case, St Andrews Hospital, Northampton, was eventually placed in special measures by the Care Quality Commission (CQC). The ward on which Ayla was placed was closed and the CQC monitored Ayla’s future care. NHS Wales also commissioned an independent report. But Ayla never did have a thorough assessment for autism to ensure an appropriate future placement and treatment. And if Ayla was being monitored, how then did she go on to die from significant failings in care?
Ayla was failed again and again, and tragically it cost Ayla her life.
Many people who belong to the Rightful Lives community have been unimaginably impacted by the provision in the MHA to inappropriately detain autistic people and people with learning disability for ‘treatment’. Autism and learning disabilities are not mental health conditions and cannot be treated. Therefore, the detention and consequent restraint of people with learning disabilities and autistic people are unacceptable, abusive, and traumatically life changing. Many people have sadly died.
For many people with learning disabilities and autistic people timely, and appropriate community-based provision is difficult to access. For this reason, so many people become distressed and can reach crisis point. Then, people and families require urgent support which they do not receive. Medically understanding distress too often results in detention in traumatic mental health hospitals or Assessment and Treatment Units. This is wrong. However, Rightful Lives fears that without the right community provision in place and without the right ‘crisis’ support in place, some may be forced down a forensic pathway or made homeless. These are all terrifying symptoms of a lack of community support and care from those paid to help.
At Rightful Lives, we believe that changes to the Mental Health Act are absolutely necessary to ensure that people cannot be detained for treatment. However, we also recognise that by removing the means to view autism and learning disabilities through a medical lens, there may be a spike in other unfavourable consequences (such as those mentioned above). This is because, without investment in community services, people will continue to be unsupported and so distress is horrifyingly inevitable. We urge our community to consider how we can hold our government to account so that we do not suffer further or worse outcomes.
We believe that any changes to the Mental Health Act must be accompanied (and preferably preceded) by an investment in the right community care and support. This should consist of housing, workforce, community services and crisis care, and must include an investment in autism diagnosis in the community. Considering the many previous failures to achieve this, local actions must be closely monitored, funding ringfenced and audited, and outcomes evaluated over time. There must be accountability for services that fail to comply. An independent and rapid pathway for people and families who need to raise concerns must be established to assist with this. There must also be ongoing monitoring of standards in community care to ensure that people live good lives and are not, for example, merely existing in mini-institutions within the community.
We also suggest that, for the autistic and learning-disabled population, the government must measure:
· numbers in prisons to ensure there isn’t an inverse increase when the provision to detain in psychiatric settings is removed (this has happened before, see Penrose Hypothesis);
· the numbers of homeless people;
· suicide rates;
· those situations whereby an autism diagnosis is removed and the additional instances of co-occuring diagnoses.
· the number of DoLS applications to detain people in hospitals with fewer safeguards and no right to s117 Aftercare, and
· the number of community placement breakdowns by provider.
There should be proper planning for those already detained in hospital when the changes take place.
Finally, the interface between MHA and the Mental Capacity Act must be properly articulated, especially as both Acts are being amended.
We also believe that people with lived experience should be at the heart of deciding all future actions for change. This group, more than any other, understands the failings in the current system and what actually works. A diversity of ‘voices’ are also necessary. It is not ok to simply invite those to the table whose rhetoric is consistent with the prevailing narrative – let’s embrace a variety of views to enhance debate.
We know that community support will not magically be improved when the provision to detain is removed. We must act now to ensure appropriate safeguards and not bury our heads in the sand.
It starts in the community and it ends in the community.
This week marks the 13th anniversary of Steven’s week long hearing at the Royal Courts of Justice where the matter in hand was for Justice Peter Jackson to hear the evidence and decide whether Hillingdon Council acted unlawfully when they kept Steven away from his home for 358 days in 2010. Rightful Lives have invited me to write this piece to remind people of that judgment, but also to reflect on the 13 years, since Steven had his day (week) in court.
My memories of the week, 13 years on, are a bit patchy. The instinctive knowledge from day one that something very important was happening; realising from the first witness session that I was on the steepest learning curve of my life; the daily bewilderment as the Hillingdon witnesses came and went at how shoddy and unprepared their evidence was. My main memories are of the people: all the legal team and their breathtaking expertise and warmth; the press team, out for a story, but so respectful of Steven and me; the witnesses for Steven’s case – the professionals and their painstakingly prepared reports and the support staff giving their own experience of working with Steven Neary. And my family and friends who listened for hours as I tried to process my shock and anger – “Would you believe it? She wrote ‘there’s always something or other with Mr Neary….’’”
The outcome of the hearing certainly changed the direction of both Steven’s and my life for the next thirteen years. The judge found that for the whole 358 days that Steven was away, Hillingdon had breached Steven’s Article 5 Human Rights Act (the right to liberty) and his Article 8 rights (the right to a private and family life). Furthermore, he judged that all four Deprivation of Liberty Safeguards that Hillingdon had served throughout the year were unlawful. The DoLS legislation had only been introduced the year prior and were part of the Mental Capacity Act. The judgment is often described as “landmark” or “ground breaking” and it’s well worth a read if you have an interest in the world of learning disability. Justice Jackson is an excellent writer, so it reads like a real page turner, but it’s an important learning resource for disabled people and their families because it reveals the shocking dark arts of some social care practice and how families can arm themselves when they find they’re in an inevitable battle with the professionals.
I deliberately ordered the outcomes of Steven’s judgment in the way I did in the previous paragraph because it lends itself to the reason why I was asked to write this post. Steven’s was the first, or at least at the time, the highest profile case of a learning disabled person’s human rights (and abuse of them) coming under court scrutiny. The Mental Capacity Act elements of the case are important, but it didn’t get the same traction with the public that the HRA elements did. Even 13 years on, the case is little remembered outside of legal/social care circles, but when it is, it’s remembered for the human rights breaches.
I guess there’s obvious reasons why that is the case. The language and concepts of the HRA are much more accessible to the wider population. We can all quickly grasp the notion of having a private/family life and why that is important, especially for someone with a learning disability. Likewise, the right to liberty is a reasonably straightforward issue and most of us understand when our liberty is at risk. Steven’s case rested on those 2 particular articles, but I would argue that all the other articles of the HRA are as accessible and understandable to the people to whom they apply (I.e. everyone). The Mental Capacity Act is far more dense and much less relatable. How many of us weigh up our capacity when making life decisions? Do we draw up a balance sheet to find the least restrictive option? Put simply, the language of the Mental Capacity Act is not the way most people frame their lives. The actual Human Rights Act may not be a significantly older piece of legislation, but my sense is that the idea of human rights strike many chords. Perhaps it’s in our blood. At one point in the Neary judgment when discussing the HRA breaches, Justice Jackson references Magna Carta. In the courtroom, this reference sent me sobbing because the sudden introduction of the history of our belief in the subject of rights, felt really profound. Basically, it’s a construct with a very long history that must be in our DNA.
Since 2011, I’ve been fortunate to be asked to write and speak about the Neary case, and I’m often struck by the split in how the story is received. The reality is not quie as stark as how this reads, but the social care professionals tend to be more interested in the Mental Capacity Act aspect of the case. I remember speaking at a large London mental health conference and when I got to the Human Rights Act part of the narrative, all the senior psychiatrists seated at the centre table, got up and adjourned to the buffet. My theory is that it’s easier to detach yourself with the MCA. The people you are in service to become objects; problems to be wrestled with and solved and it makes you feel important. It’s much harder to “other” the person with the Human Rights Act – the clue is in the title; you can’t consciously escape the fact that you’re dealing with a human being. In the league table of acknowledged oppressed groups, people with learning disabilities seldom get a look in; they’re permanently in the relegation zone. Perhaps, as a society, we need it that way. A group of people, so alien, so different, that the language we apply to ourselves cannot possibly be applied to them. The HRA blows all that to smithereens. Even the psychiatrists at the top table cannot avoid the truth that their right to a family life is no different to that of Steven. Non professionals tend to switch off when I get into the nitty gritty of the MCA, but switch back on when we move onto the HRA and its day to day relevance of Steven going about his business.
I’ve become a bit of an HRA anorak over the years. And I’m stubborn too. So, when Steven has his annual care plan review, or better still, his annual Community DoLS assessment (don’t ask!), I refuse to engage in the language that turns Steven into a thing. When the subject under discussion is “accessing the community”, I say, “oh you mean, when he pops to the shops to buy some Frazzles.” I’m determined not to be derailed from the “he’s a human being living a normal human life” track. Throw in the occasional “that feels important to preserve his article 8 rights” to give added power to your elbow. Myself and the support workers spend a lot of time talking about Steven’s life, but although we’re all well trained in the MCA, we don’t talk about his life in this way. We’re currently planning a trip to see The Pet Shop Boys and I can guarantee that the phrase “risk management plan” won’t pass our lips.
When I helped start Rightful Lives a few years back, we were clear that we wanted to present the exhibition as people living completely ordinary lives and the absolute lottery of living an ordinary life when you’re needing to deal with the world of social care. How many stories have we heard of learning disabled people’s lives being turned upside down overnight by a change in social worker or a change in Council policy? We learn some bitter lessons through our dealings with social care and during my recent five year cancer battle, the most pressing thing for me was to make sure that Steven remained supported during my absences without having to bring in social services. The risk to Steve’s human rights (i.e. to live the life he loves) was too great. Back to the birth of Rightful Lives, through Steven’s case, it seemed obvious to me that the best framing for us to achieve our goal with Rightful Lives was by using the HRA as our anchor. I knew that if we framed it any other way, or started using that weird language of other models, we’d be all at sea. That is still my advice, if anyone is interested – stand your ground on the HRA ground. When Steven was away, I had a dream one night that turned out to be very useful tactically. In the dream, Steven and I were in the audience of the performance of a chaotic Shakespearean farce. The actors were being driven mad by the platform on which they were performing. I spotted, underneath the stage, that a mechanical system controlling the stage was faulty, but nobody could see or acknowledge the fault. The most pertinent part of the dream was the actors demanding audience participation and cajoling us onto the stage. A Brian Blessed type voice came over the tannoy, informing us that under no circumstances, must we set foot on the stage. That was my learning. Stay seated in the audience. Watch the show for the duration of its performance and then leave the theatre and get on with living your life. The HRA allows us to do that; other social care legislation has us joining the deranged players on stage.
I know that paints a dramatic picture when I’m usually the opposite; paint Steven’s life as the most ordinary life imaginable. A human life, a rightful life, can be a very magical, fulfilled life.
Here’s our in depth analysis of why Building the Right Support has failed…in the form of a poem.
There are lots of reasons why the right community care and support for people with learning disabilities and autistic people just isn’t there.
One of those reasons is the huge power imbalance that exists between professionals and people and families.
We asked our community to give us examples of statements professionals have made to them and put them in a video.
It’s very telling…watch by clicking on the link.
If you want to support the Stolen Lives Wales protest on April 17th but cannot attend, please share a photo of yourself holding one or both of the posters below on social media using the hashtag #StolenLivesWales. If we get enough photos, we will make a video to keep raising awareness. You can also email your photo to campaigns@rightfullives.net.
Thank you and diolch yn fawr!
Download link below
Download link below
What are they really counting?
Why is everyone so focussed on the numbers of autistic people and people with learning disabilities stuck in hospitals?
What does this actually tell us…if anything?
Often the reason why our people are detained is because they are in a totally inappropriate situation or environment where they are being failed. Poor quality, insufficient or non existent care and support is at the heart of that failure. If people get out of hospital, it will be timely, agile, safe and supportive community care that will prevent them from being readmitted. Fundamentally, what is wrong starts in the community and ends in the community.
So why is everybody so focussed on the number of people in hospital? Why is this number the measurement of the success – and failure – of Building the Right Support?
In our video we look at other ways of measuring success. Maybe it’s time to change the focus?
Click on the link below to watch.
https://youtu.be/x-Qip5Su4bE?si=H-dnDvWXRg8ownho
I might not be the CEO of CASCAIDr any longer but I can’t stop caring about it, and the crisis in the advice sector!
I want to highlight the cost of offering decent legal advice about adult social services disputes, so that people understand why we’re currently closed.
A bit like when one goes to A&E, people are often distressed and not particularly organised about making a referral, with little idea how to order their story. They maybe haven’t got the words, or they’ve been battling the system for months. They may be damaged, pessimistic or strung-out about having to go over it, all over again. But we’re online, only, apart from reasonable adjustments, so we have to expect people to get their story down, somehow.
Just like at A&E, you’d want to find someone there who knows the difference between a Conversation, an assessment and a care plan, wouldn’t you? Between a direct payment to the client and one to their Authorised Person instead? Between CHC and s117 or a split package? Between Choice of Accommodation and Continuing Ordinary Residence? Between a tenancy and a placement?
Community care law is not taught in universities. The only places such lawyers are found are legal aid law firms and local authorities, or other charities. Most CABx don’t cover this area of law.
Even if a lawyer is happy to work in a charity that isn’t a law firm, they’ll have bills to pay.
They’ll have spent YEARS acquiring expertise and honing the skill of unpacking a referral, figuring out whether the person is stuck somewhere in the Care Act process, or elsewhere, due to housing, special education, primary health need or mental health issues.
That set of skills has a market price. In the real world, scarcity invariably puts the cost UP, or people move OUT of the field altogether if they’re not decently remunerated.
Putting someone into a Triage/casework role at CASCAIDr, with those skills, requires £55K, plus oncosts, plus a proper contract, before anyone will move roles into the charity sector.
Even that ONE person will need IT systems/management, regulatory fees and licences, insurance and an administrator, so they can concentrate on law. They must balance the rate of work coming in against the staff they can pull in to take on the growing work.
So we can either chase grants, fund-raise or sell other useful stuff, if we are to remain viable, without charging people for advice.
That requires more bodies with brains and legal acumen. Volunteers of any kind can be taught community care law, but need managing, because whilst highly motivated, they work remotely, and their output needs supervising.
That’s why CASCAIDr needs a sponsor, right now, if we are to survive (please email leeforster@cascaidr.org.uk if you know of someone who might grasp the enormity of this field of expertise just dying out…)
Or donations, please, via our site on https://cascaidr.org.uk/donate/
On The Inside
You’re looking from the darkness to the light,
And even on the inside, it is night.
No festive joy is yours,
Just locked and lonely doors
While those who should will never do what’s right.
First Christmas in psychiatric hospital.
We signed in and we told we have one hour to visit due to other parents also booking in and staffing levels being quite low.
The visitors room it’s freezing cold and a staff member sits at the door at all times with the door open. We are taking a huge bag of presents and cards all carefully chosen to comply with Ward rules.
As we leave it I am overwhelmed with sadness. She stands in the window waving goodbye to us. They won’t let her home at all, the risk is too great , yet they discharged her just five weeks after this.
We go home to an empty house with no tree. Christmas isn’t welcome in our home this year. We head to a friend’s for a bite to eat and my mobile rings she’s on her way to A&E she’s eaten one of her Christmas presents and it wasn’t edible. They are dealing with it we don’t need to go.
Christmas on a psychiatric unit is the worst. Loads of familiar staff are away and locums are in and bank staff. They refused to let her go outside for days over Christmas due to low staffing levels or it was too rainy or it was too cold. They stuffed her full of sedatives and vitamin D tablets instead.
Paper chains are allowed and a basic Christmas tree but Christmas tree decorations are generally unsafe..
Many of the patients have gone home so its Christmas Dinner and loads of films ( same as any other day ) and then some card games and maybe the wii fit.
It’s Christmas Day. I’m in hospital about half an hour away from my parents. I’m in the small visiting room. On the squat table sits a cardboard box of presents wrapped in black and white cat wrapping paper. I am taking fat fistfuls of Mark’s expensive fruit and nut selection and cramming them into my mouth. We have an hour and a half with each other before we have to go and the next family is allowed in, since my parents never go on the actual ward. There’s a healthcare assistant sitting in the doorway. Kicking her legs bitterly. Like she has been given the shit job.
This Christmas I will not be allowed to go to church. My parents show me through the presents like a walk in a beautiful forest. One by one, each a little piece of love. soft felt slippers, pink and gray, a self-soothe box full of sensory toys, a 5 seconds of summer coloring book (Staples carefully removed), nail varnish remover pads to be used under careful supervision (except they weren’t.) and my beautiful dog coming into the secure garden for snuggles. I do not even have a grounds leave so this is a huge treat.
Christmas dinner will not be a family affair. Most of the other children are at home but I am taken back to the unit after my designated time is up. I am wearing my emerald green marks and spencers jeggings and my new slippers as I trudge back through the airlock, arms full of goodies, most of which will have to be locked away. My tummy is full of fruit and nut mix and my mood is somewhat stable and that is my first Christmas in hospital.
The names are piling up
I remember I can speak, write
Something that does not occur to me while they are
Alive,
Eating cereal with plastic baby spoons
Or not eating at all, except maybe through the nose.
But when they are dead, and it feels the worst,
I fucking roar
Quietly and with respect for those around me, who may have noise sensitivities.
God surely must be quite tired of checking mentally ill children into heaven.
The coroner must be tired.
The nurses must be tired.
I am very tired, it seems relentless these days.
Another day, girl girl girl boy they/them she/them he/them reduced to death by misadventure or chronic or deceased or worse, somehow, EUPD which might have just been autism and/or ADHD and/or PDA profile and/or what does it matter they/them are dying/dead.
I am in love getting married and it’s been 7 years and they’re still dying/dead and I’m here/alive feeling guilty. When does it end? The children without help without choices without voices?
I’m getting impatient.
I would really like to know.
Written by Anwen
November Headlines from Rightful Lives:
* Baroness Hollins led report into the practice of using solitary confinement for people with autism and/or learning disabilities published and debated in Commons & House of Lords. A less than lukewarm government response.
* The Priory Group are facing 2 charges of criminal charges after CQC reported failures to reduce harm that led to the death of Matthew Caseby.
* Jury Inquest begins into the death of Jessie Eastland Seares at Mill Hill hospital in Hove. George Julian reporting daily.
* Psychiatrists record their reservations of proposed changes to the Mental Health Act. Concerns published in National Journal.
*MP tweets of her pleasure that planning application for residential home for people with learning disabilities has been refused due to noise concerns and that the character of the area would change.
* Written and directed by Stephen Unwin, the play “Laughing Boy” about Connor Sparrowhawk opens in London in May 2024.
* Bristol Council propose a “fair & affordable care policy” where people could be moved from their home into institutional care if it is cheaper. Lucy Series’ research shows no evidence was produced to support this policy.
*The Fabian Society propose that the right to independent living becomes a secured Right in the HRA. In related news, the government make their usual pre election promise that if elected, they will review the Human Rights Act.
*Autism Alliance launch their ‘Breaking Point’ campaign.
Jessie Eastland Seares died in Mill View psychiatric hospital in Hove at the age of nineteen. A young autistic woman, she is remembered for being artistic, creative, funny, kind and colourful. Yet, she was failed by a system that was supposed to help her. She asked her parents to share her story and so we are proud to share some of her wonderful artwork here.
Thank you, Jessie
This statement can be read below or listened to as part of this video:
Three members of the Rightful Lives Admin Team have, over the past four years, been part of Baroness Hollins’ Oversight Panel, tasked with looking at the use of solitary confinement in psychiatric hospitals.
We have heard some heart rending stories and been appalled at the ongoing human rights abuses suffered by autistic people and people with learning disabilities. Basic needs are simply not met, abuse is rife and people face being totally dehumanised by their experiences. And as fast as people leave solitary confinement, other people take their place.
We were pleased to be able to contribute to Baronesss Hollins’ report and recommendations and we made sure that people at the Department of Health and Social Care, NHS England and the CQC were aware of the abuse and injustice suffered by members of our community. We were also pleased to hear of the successes of the HOPE(S) program and the senior intervenor program, but there is now no guarantee that these powerful initiatives will continue. It seems that things that work are just abandoned.
Not for one minute had we envisaged that the Government’s response would be as ineffective and insulting as it has been. We were led to believe that the Department of Health and Social Care was taking this issue seriously.
As autistic people and family members, we are accustomed to being asked to share our knowledge and expertise only to have that ignored or watered down. We invested our time and energy in this work because the Secretary of State for Health and Social Care appointed a Peer with expertise to make recommendations for improvement. We expected Baroness Hollins, and therefore us as an Oversight Panel, to have our recommendations taken seriously. It seems that this government would rather throw money at delaying tactics than actually take any real action. Our concern remains with all the people who remain in solitary confinement because this government does not care enough to make the changes needed.
Not only has the government proved that they really don’t care, their response has merely given permission to hospitals, practitioners and commissioners to carry on as normal. All of this is so unfathomable when we know that care in the community is so much more cost effective and rights respecting.
Solitary confinement is toxic, inhuman and degrading and frequently in breach of international and domestic law and guidance. There is little or no accountability when services fail people. Quite frankly, we are furious that, with more people than ever subject to enforced isolation, the Government doesn’t appear to be in the least bit invested in doing what works.
* “It takes every ounce of will and energy to visit my beloved daughter now. ‘Please take me home’ is her plea at every visit.”
* Lancashire Council ordered by court to pay learning disabled man £355,000 after judge ruled man had been unlawfully deprived of his liberty in a care home for 7 years.
*Human Rights Watch is visiting UK to collect evidence of institutional abuse of disabled people.
* “My son is currently in a seclusion room and has been for 3 months.”
*Access Social Care launches crowdfunder for litigation on transparency and accountability around funding for adult social care.
*My Life My Choice launches a self-advocacy network aimed at getting people with a learning disability out of secure hospitals and into appropriate housing in their communities.
As the rumours increase that this government will not take the new Mental Health Act Bill forward into law, Alexis Quinn, Dr Dawn Cavanagh and Julie Newcombe discuss how the Bill might have failed to protect Autistic people and people with Learning Disabilities anyway.
Alexis Quinn talks about the experience of Trauma for Autistic people and how to help.
In this video, Alexis Quinn talks about what makes genuine coproduction.
Salli Midgely, Dr Dawn Cavanagh and Alexis Quinn discuss psychological restraint in this video.
Panic attack, 4am. The 4th this week. Where is she? What is she doing. I imagine her angelic face buried into the hospital issue pillow, praying she is sleeping. Sending my angel to hers asking them both to wrap their arms around her. I won’t sleep now like the hundreds of nights before. I clean the house, anything to keep thinking about what has happened to us. It’s a parental nightmare.
26 months in ATU. The threats they made at the start were real. We spoke up, we let others know and they fought back with endless amounts of money to divide and conquer our family out of pure spite. For 21 years we never asked for help. They didn’t offer help either. Then one day our daughter needed help. What a mistake to ask.
The psychiatrist is a sick one, probably mentally messed up himself, is on a power trip after we challenged him and others about the prolonged detention, akin to prison. The others followed including the social worker whose bones are made of willow, bending to the whims of his masters just to keep his job. So much for looking out for the rights of my daughter.
Our beautiful, autistic daughter institutionalised now. Eats her meals with a wooden fork, paces up and down a corridor with no access to others except nurses who, when they are not injecting her with anti-psychotics, all know how horrific the situation is but dare not speak up. (except for one who agreed her situation is a travesty).
Two years in a psych ward. Secluded. Never been home. I asked the psych what ‘behaviour’ he would present with if he was my daughter,. I tell you no word of a lie, he laughed and said she ‘was getting good care’. My older son told him to f**k off. That was the start of it, the campaign against us. If you are not aware of the power these people have, I suggest you inform yourself.
It takes every ounce of will and energy to visit my beloved daughter now. “Please take me home”, coupled with “I shouldn’t be here” are her plea at every visit. She is chemically restrained, her head is down, her speech is slurred, she walks like an 80 year old with dementia. What can I say? We have no control. Her father is destroyed, her siblings don’t know what to say. Our house is a place of sadness and darkness, the heart has been ripped out of our family. How can the world not know what is going on in these nightmare holes of hell? Where are the human rights advocates? Where are the autism charities who turn a blind eye? Over 2000 locked up for something they didn’t do.
Our family is forever changed. Once I had a daughter, the centre of our family, most beloved, smart, quirky, funny, creative, happy. She is still my wonderful daughter but she is not who she used to be.
She turned 21 with no support in adulthood, things deteriorated. Asked for help. They took our daughter because we asked for help. We are being treated like defendants in a criminal court case. If you are reading this and you think this couldn’t happen to you and your beloved child, think on. We were that family. This very day, another family is experiencing the inconcievable heartache we feel. Can you imagine going into the jungle and a wild animal attacks your child? That is what this is like. It’s not going to go away until EVERY family speaks up and demands justice. Can you do that? If not for my daughter, do it for your own children or your children’s children.
My daughter is autistic. She committed no crime.
Psychological restraint is any kind of communication strategy that puts psychological pressure on people to do something they don’t want to do or stop them from doing something they do want to do.
Communication strategies might include verbal pressure (e.g., threats), non-verbal pressure (e.g., eye rolling, tutting etc.) and systemic pressure (e.g., being detained, locked in a hospital and feeling you have been made powerless by the environment).
Psychological restraint is probably the most common type of restraint but is not well known and spoken about, so it is difficult to challenge.
Many people that use the Rightful Lives Facebook group talk frequently of being made to feel powerless by the system and unsupported. They also talk about things such as:
• being observed on visits and intimidated by staff sitting with a paper and pen
• feeling as though they can’t challenge their loved ones’ care for fear of being ‘punished’ or ‘things being made worse’.
• their loved one being threatened with not having leave etc.
Psychological restraint, like other types of restraint, can breach peoples’ human rights. Psychological restraint is traumatic and results in poorer treatment outcomes.
The document linked below explains how psychological restraint breaches people’s human rights and will enable you to make effective challenges. Thank you to Salli Midgely and Sheffield Health and Social Care NHS Foundation Trust for agreeing for us to share it.
Click on the link to read it.
Psychological Restraint – a rights based framework
In this video, Rightful Lives’ Alexis Quinn looks at the implications of the Metropolitan Police Force’s decision not to respond to mental health incidents that are not seen as immediately life threatening, disproportionately impacting neurodivergent populations.
We believe that the police have duties under the Human Rights Act and the Equality Act which they are unilaterally setting aside before alternative services are in place. And we wonder if NHSE and ICBs will step up to provide those services because people will not be safe. Police have a duty to protect lives, even neurodivergent lives. They are the only ones that can convey using legal s136 powers.
We have asked NHSE, the Ministry of Justice and the Metropolitan Police Force to issue statements about how distressed neurodivergent people will be kept safe (and not criminalised) in the light of this development.
Watch the video here: https://youtu.be/FXShy2i0jkw
Dannielle is autistic and her poem is about the trauma of sexual abuse within the walls of a psychiatric hospital. Her bravery and her determination to use her creative skills to keep going shine though her words.
The video of her poem is here and is read by Alexis Quinn.
Josh’s mum, Leo, tells us a bit about Josh’s art.
Josh is 16 and a young artist.
He loves art and can name any famous artist in seconds since age 7.
He goes to art lesson on Saturdays.
Being an artist has given my son huge confidence.
Josh has autism and OCD with social and health anxiety.
Those issues hinder him hugely but I am so very proud of him for going to those classes as it’s hugely difficult for him to deal with society and groups of people.
One of his pieces have been acquired by Lush cosmetics for Christmas 2023 paper. On that paper will be little secret messages that both Joshy and I did.
He is so very proud of it and so am I.
He has sold two of his paintings.
And was choked by how much it went for.
The money goes to the charity that gives him the lessons.
So he has not made any money.
A Chinese gallery in Hong Kong is interested in taking the painting of the monkey to Hong Kong.
We don’t know if it will happen but if it does, again it’s a huge achievement for a young man who would not speak to anyone or ever go out unless it was to school and even school was hard.
It goes to show that if you have an ability and you have autism or any other disability and people tell you what you can’t do and not what you can , you will never know what you can go for.
Don’t ever let anyone tell you that you can’t.
I came across #rightfullives in May 2022 originally through Facebook. Aside from the continuous incredible support and advice it was lovely to find new friends and become familiar with people who share the same or similar struggles aswell as heartbreaking to see that so many people could relate or I could relate to them. And to hear the stories. Despite all, rightful lives brings us all together as one big united front all fighting the system together and supporting one another through it. I’m so glad I came across this group and wished I found these incredible people sooner. The work the admin team do is also incredible. If you have seen my posts in the group and supported me then you may also know and have probably seen the latest dispatches episode on Channel 4,
LOCKED AWAY: Our Autism Scandal!
If not and you either want to educate yourself on the ongoing crisis autistic individuals like myself are going through with the broken mental health system it would be great insight to do so, Or just to feel less alone, along with the plenty of other documentries I recommend that are similar to this matter. This is an ongoing problem and has been for too long now. Things aren’t moving as they should have or at all really with healthcare and although buried deep and covered up, these asylums are real. It happens more than you know, everyday. Right now there’s thousands of people out there who are silenced or aren’t able to say what’s happening to them. The numbers are only rising Amongst us who spoke out in the documentary We are just a handful of individuals and the documentary shows only a snippet into our lives as autistic inpatients trapped in a far broken system crambed into a 30 minute episode.
I’m don’t regret taking part and will continue to fight against the system for all and our life beyond breightmet (ASC Healthcare), littlewood, Cheadle and the thousands of other inadequate hospitals out there both abusing and neglecting autistic people all over the country in all kinds of ways possible.
But I would just like to thank Julie Newcome and the rightful lives team & everyone participated in the groups. Because without Julie, who actually was the one who put me forward to the director Richard & his team, I would still remain silenced and most likely stuck at breightmet centre in Bolton, so in a way you all saved me and I will forever be greatful and show my gratitude. I cannot thank you all enough!
I also encourage others that if you can find the time and courage to do so, please do speak out if you can because like I said at the end of the film “if we don’t speak out no one will hear us and we remain silenced”.
Please make sure to follow Rightful lives on Twitter for their continuous great work that they do and to keep up to date with it all. And I recommend joining the Facebook group too for the best support and to know some of the bravest, kindest people & families who will no doubtly have experienced something similar and offer you great support with whatever you are going through! Joining rightful lives was the first time I felt listened to and less alone in what has been the worst & most challenging experience of my life. I will never forget all of which was there for me during this time. And if you want to keep up to date with my individual story I post alot on:
Tiktok & Instagram @amyjayeastwoodgrimes
Twitter: @EastwoodGrimes. Also the lovely Katy who was too unwell to take part in the show Twitter: @Katy_Lauren Tiktok: @Katy_Laurenhx
You can also follow Lauren’s Mummy on Instagram: @misslindseyj & Tiktok: @laurensmummy
Lauren is girl who also featured in dispatches last Friday. Who sadly lost her life in the system in May 2022. Her Mum in on a battle to courageously continue to fight the system in the name of her daughter who sadly lost her fight but inspired many including myself by bravely sharing her journey. Like her equally as incredible mum fighting the system helping many others in a similar situation.
And please do sign her petition for change and use the hashtags #LollysLaw #LiveForLauren
And last of all my thoughts are with the others who took part on the film Shaun, Danielle and her Mum, Lauren and her family! Along with my incredible friend who also did filming who spoke out about Breightmet who can’t go unmentioned in this article for her bravery and strength your incredible too. My thoughts are also with all the other warriors who we’ve lost, and all effected and their families. But like I said this goes beyond us, However We are all warriors and We have to keep fighting and supporting one another until we are satisfied. So to whoever is reading this please don’t give up, you will never be alone. Your amazing and don’t let them them make you feel otherwise. We hear you loudly, You’ve got this, We’ve got this!
Many thanks Amy Jay Eastwood.
ps (thank you for the out-pour of support that everyone has shown me this past few days since the film came out, you have all restored my faith in humanity and that there are so many kind people in this world amongst those not so much. So thanks for everything, and thanks to all my friends, family, my idols Jedward who are my heroes that I am lucky enough to have known for most of my life who inspire me, make me smile at the worst of times, and always have my back all the way, you’re super Jepic. And to my incredible mum who taught me to speak out and how to use my voice, I’ve learned that sometimes your voice is all you have in most situations, though I’m aware & have seen so many people are silenced or unable to say what’s happening to them, so I am greatful I can use my voice and make myself heard not just for myself but for everyone of us who can’t speak out. And I promise this is just the start from me). all I want is to make change and for everyone to be free and not have to go through what so many have, things need to change. Please keep sharing your story and remember this is just apart of it…
#Dispatches #Channel4 #OurAutismScandal #ActuallyAutistic #RightfulLives
We were sent this anonymously. Read it out loud for all those detained.
ATU’s Mother’s Day
My child is a prisoner, I the walking wounded.
He cries at night, Mum! My body and soul bled of the life force I so desperately need to get him out of there.
“He’s fine today, he ate his dinner”, cold comfort six months later, detained he’s still a sinner paying the price for not being ‘nice’ for being autistic.
My son, my love, my centre of being, my thoughts of you now, of what you have seen, heard, endured in that hell-hole of the absurd where so many others have been. You didn’t deserve this.
Tomorrow is Mother’s day, our 30 minute visit cut short to allow other mums to elicit a reaction, smile, hug, from their own traumatised childen, sustaining them another week, while they ask when will this nightmare end.
It’s the night before Mother’s Day and while I believe this day was made more for Hallmark Cards and florists than me, this Mother’s day will get my attention, the day my son remained in secluded detention for something he didn’t do and the failure of this nation, despite the First World location, to understand he is:
autistic
As Mother’s Day approaches, we’ve been thinking about all the parents who have children in ATUs and all other institutional settings, and of all the parents with a learning disability and autistic parents who may be stuck in these places.
We wondered if parents in these situations will be apart from their children on this day when so many other families are able to celebrate, so we made a video to look at the issues.
In this video, we hear a poem about how it feels to be so exhausted from the battle against the system. We then hear from Alexis Quinn, Dr Dawn Cavanagh and Julie Newcombe about their own personal experiences of being apart from their loved ones.
Finally, there is information about blanket restrictions and Article 8 of the Human Rights Act (respect for your private and family life) that people might find useful in challenging hospital decisions not to allow visits.
You can watch the video here:
There are so many reports and reviews about ‘what good looks like’ for autistic people and people with learning disabilities. We think this might be one way of looking at it.
Alexis Quinn, Dr Dawn Cavanagh and Julie Newcombe discuss the proposed changes to the Mental Health Act and how these could impact autistic people and people with learning disabilities.
Rightful Lives admins, Alicia Wood, Alexis Quinn and Julie Newcombe discuss their experience of Positive Behaviour Support.
This is the video we put together to mark the tenth anniversary of Winterbourne View in 2021. Thank you to everyone who contributed, particularly Dannielle Attree and Eddie Marshall.
We asked our members what words they would use to describe a good life. This is what they contributed.