Support our work Campaign with us Campaign news My Freedom An in-depth read marking the 10th Anniversary of Winterbourne View We are Steve, Michael and Sammy, the self-advocacy leadership team at bemix. Our freedom means everything to us. We are free to live where we want, make friends and choose the work we love. Two of us have become parents. We are free, as our company strapline says, to be seen, be heard and belong. On 31 May 2011, we saw televised scenes of the abuse of people whose freedom was brutally stolen from them. 10 years after Winterbourne View, here are the voices of people today from the hidden world of secure inpatient mental health care. Some communicate with few or no words, but have as strong a voice as anyone! With a focus on who they are as people just like us, we share their experiences of compassion and cruelty in the system, and propose what must be done. We will also publish their full-length individual stories in the coming weeks. Voices from a hidden world Tim (name changed to protect identity) People we spoke to whose behaviour has been described as challenging know what it means to have their freedom taken away. This can be necessary and proportionate. Tim designs jewellery and loves playing football. An offence meant time in prison, followed by hospital and now step-down care under a court order. Tim says: “It was hard when I was in prison because I had to learn how to follow the rules, but I managed it. Now I'm feeling really good with my life. I’m treated well by staff, they always listen to me. I'm getting my life back on track.” Reece Loss of freedom can expose people to inappropriate care. Reece is a footballer, Spurs fan and keen cyclist. Nine years ago, a mental health crisis and violent behaviour led to sectioning and periodic stays in hospital. Reece shares from his rehabilitation ward: “My first acute hospital was difficult. Only one other person had a learning disability, the rest had mental health issues. Staff didn’t talk in a way I understood. But where I am now, I think I’ve done quite well. I get help from psychologists. I feel alright about my life. I want to move on and think positive.” Vicki Loss of freedom can violate people deeply. Vicki is creative and loves time with family. Describing five years in hospital, she shares: “I went there voluntarily. No one told me I was on a section. I was only told when I asked if I could go home. I never felt safe in hospital. For two years I slept on the floor because I didn’t feel safe. There was no choice of when to eat. If you missed the meal time for whatever reason you had to wait until the next mealtime for food. Going out off the ward didn’t happen much and it was called leave. Leave could be cancelled due to different things, but ‘bad behaviour’ was the most common. If other people had ‘bad behaviour’ my family visits were cancelled and the ward had a no visitor rule for up to three days.” Vanessa’s son Vanessa is a self-advocate whose son is in hospital and cannot be named. Travelling, boys brigade and horse riding were among his joys before admission eight years ago. Vanessa shares: “I put him there after he began attacking me and everyone. But I wanted help for him not to stay there. He finds it really hard to express himself, making him frustrated and angry. He tells me what he’s done wrong and we talk. He feels guilty afterwards. He can’t communicate like us when he’s stressed. I think no work has been done around challenging behaviour, autism or speech problems. When he’s got challenging behaviour, he suffers from challenging behaviour. They’re not listening to his emotions when he’s smashing things up. When he levels out he phones me up. I ask why he’s doing it. He says, “I don’t want to be here. I want to be with you and Dad.” But they won’t let him come home. I think they’re scared he might attack us, but he might not if he’s given the chance. They’re not giving him the benefit of the doubt, they’re depriving him of his human rights.” Gary (name changed to protect identity) Gary is a smiley, family man who enjoys car shows and football. A rare neurological condition causes painful health needs. When the distress of this caused challenging behaviours, Gary was placed in an Assessment and Treatment Unit (ATU) for two years. His mum explains that “while under section, he was heavily medicated and on one occasion restrained for 40 hours. He was admitted to general hospital and the next day couldn’t move his arm to bring a drink to his mouth. No action was taken by the police because Gary couldn’t say what happened. ATU staff didn’t understand how to communicate with him, even though we explained his particular signs. Simple things took away Gary’s freedom and identity. I’ve seen him wearing someone else’s clothes. Someone cut his hair without asking him, it was never that short. If he was hungry but stopped from going to the kitchen, he would bang his head. That was seen as challenging behaviour, when he’s just trying to say he’s hungry. He came out with barely any belongings of his own. Gary has been in his new home for just four weeks. But there’s a long road to recovery from hospital. When distressed, he calls himself derogatory names which must have been said to him in the ATU. It’ll take him time to trust people again. But he has amazing resilience. I’m glad the smile is still on his face.” Adam Adam is an ‘adrenaline junkie’ with an active lifestyle. He loves the motion of funfair rides, which meets some sensory needs. He uses British Sign Language (BSL) to communicate. Two years ago, he became infected with impetigo and sepsis. The distress caused by sores all over his body led to dangerously challenging behaviours. Admitted to hospital, Adam could not see his family. The BSL signs and routines shared by his mum were not used. He was physically restrained 33 times in six weeks and chemically restrained regularly. His mum describes visiting Adam six weeks in. “I knocked on the door. A man came out, asked me who I was and then shut the door, shouting “Guys, Adam’s mum is here.” I was worried, so I pushed my way past the man and went into the flat. Two support workers were either side of Adam, holding his arms down in a crucifix position. Adam looked at me and said: “Mum, home”. He’d never said two words before. I decided then that my son was coming home with me. The staff were on their radios panicking and tried to stop me, but I walked Adam to my car and we drove back home. I worked on a way to help Adam learn not to pick at his scabs. Every time he went to scratch, I prompted him to ‘tap tap’ on the area instead. It took a long time, but he’s free of sores. Life now is brilliant! Adam has his mojo back. But he still suffers with PTSD from his hospital stay. I don’t think that will ever go.” Omid Omid enjoys travelling, swimming and horse riding. His greatest love is his Mum’s food! After he was sectioned, his mum found him alone in a locked room with no window, no lights on and only a single mattress on the floor. Omid was sweating heavily, and his forehead was bleeding from banging his head repeatedly. His mum says this was his way of saying: ‘Open the door, let me out, I don’t want to be here’. He remained in this hospital for a year. In a later setting, Omid was very anxious one day, pulling on his mum’s arm and not letting go, saying “mum home, Omid home”. Before leaving, his mum went to the garden to make sure he was calm. What she saw was devastating. Six staff were restraining Omid, one of them kicking him very hard. When she asked to use a phone to report the assault to the police, no-one allowed her to. In seclusion, Omid repeatedly asked for “water, water, water” and “out, out, out”. He often had bruising all over his body, black eyes and had two teeth broken. He had a broken arm, in plaster for over a year, now deformed and unable to be used normally. Compassion and cruelty There is compassion in the system, but also disturbing cruelty. Sectioning, restraint, psychotropic medication, segregation and seclusion have stolen freedom and destroyed many lives. At its worst, personhood itself is erased. In the words of Alexis Quinn: “The very essence of who you are is taken away”. Dannielle Attree wrote in blood on the walls of her seclusion cell: “I am the girl with no face”. Professionals cannot know firsthand what this means. Nor can we. This fact calls us all to listen and act with great care and compassion. The power of the provider How can such cruelty - deliberate and accidental - exist in healthcare? We can only touch on answers here. The Whorlton Hall scandal led us to think hard about the power of the provider over a person’s life. When a person is sectioned, this power is almost total. Staff are with a person day and night. Even if care is good, such power over a powerless person is degrading, and vulnerable to abuse. In any secure setting, people with learning disabilities must have access to many other people outside the provider. Families, advocates, peer-advocates, commissioners and inspectors must be frequent visitors. Daytime activity and education should come from an independent, expert organisation. Inspections must be unannounced in situations of bad reputation or whistleblowing. Sammy points out: “If someone wants to punch someone and they know the Care Quality Commission (CQC) is coming, they won’t do it and you won’t be able to see the bruises.” Michael adds: “Talk to the people in there without staff present, because some staff talk for the person. Some people get scared of speaking up. If they report it, they get stuff done to them.” What else needs to be done? Last year, our friends at the Tizard Centre in the University of Kent published a thoughtful study on what features of care and support keep people well, preventing behaviour that puts them or others at risk of harm - sometimes called “challenging behaviour”. We agree with many of the features they listed, and have some more to add: Good communication Good communication is fundamental. Steve does not like the term ‘challenging behaviour’ because “it takes the focus away from understanding the person and how they communicate.” Every story above confirms that “challenging behaviour is less likely when the person understands and is understood by those around them” (Tizard study, Table 1). A valued, caring, well trained workforce We need staff who are well trained, caring by nature and valued as professionals. This underpins the unconditional, positive social interactions people need (Tizard study, Table 1). Vanessa describes one such worker: “My son needs to go out to different places. Only one staff member will go out in the car with him. Even in lockdown he still took him out. He’s on his level. My son has no behaviours with him.” Asked who should deliver training, Steve says: “Get more people with lived experience, not just professionals who say they know what it’s like to have a mental health problem or a learning disability, but don’t.” Jodie adds: “It’s better coming from a person with lived experience, because we know what people with disabilities need and how to support them.” We welcome the Oliver McGowan Mandatory Learning Disability and Autism Training trial, and will be involved in evaluating it. Commissioned by Health Education England, experts by experience will be equal partners in the design and delivery. Valuing families The Tizard study recognises that in settings where people stay safe and well, “carers understand the lifelong importance to most people of their family” (Tizard study, Table 1). Michael adds: “I can’t stress enough that parents are really important to getting people back into the community. They know the person best and what they’ve gone through and know techniques that calm them down.” The stories above reveal the intense felt need for family, and the intimate knowledge parents have of loved ones. The power of lived experience We believe empathy and shared life experience are the final keys that will unlock people from settings which limit their lives, destroy their hopes and expose them to abuse and neglect. While much attention has been given to the number of people still in long-stay hospitals, the length of detention is just as important. As of April this year, 17% of inpatients have stays of over 10 years, the upper limit of Assuring Transformation reporting. We found that people with stays over 20 years can barely imagine any other reality. Last year, we and other self-advocacy groups began working with NHS England to propose new improvements to inpatient settings. We are asking for: Peer-advocacy People can see an independent advocate, but relate more to shared life experience. Peer supporters have greater perceived empathy for the person, enabling open, trusting relationships and greater acceptance and understanding. Sammy says peer-advocacy “should be available weekly, to get to know people so they’ve got the option to talk to someone. An informal chat, maybe away from the setting to talk freely.” Michael adds: “If you have a peer-advocate going into meetings with you, they’ll know what you’re going through and communicate without being controlling or patronising.” People institutionalised by long hospital stays may face trauma moving out. As autistic leader Ann Memmott explains, peer support could transform the transition. Safeguarding training for people in secure settings Safeguarding training would help people in care become aware if they are being abused or neglected, and what to do about it. The National Head of Safeguarding at NHS England tells us no such training currently exists. Sammy points out: “There’s not enough training and support to whistleblow. People with learning disabilities begin to think it’s normal to be treated like that – normal to be abused.” This training must be delivered independently of the care provider. Self-advocacy training Self-advocacy training builds confidence to speak up if people are abused or neglected. Steve says: “It’s important that people who have moved on from hospital go in to tell their life story. This will help people know their rights, be confident to self-advocate and have hope for the future.” Training from people who have moved on from secure care will strengthen empathy and support their own recovery too. Busyness, responsibility and giving back Keeping busy and meaningfully occupied (Tizard study, Table 1) is vital for wellbeing, but often undervalued and not a strength of clinical healthcare providers. Commissioning should engage organisations skilled in supporting the wider community to include people. Vanessa says of her son: “When he was home he was doing something every day. He needs to get out more and keep his brain active.” Truly meaningful activity includes being trusted with responsibility and giving back to society. Jodie says, “See what we can do, not just what we can’t do.” During a forum we ran in a hospital, a man shared with great pride: “I was difficult when I first arrived, but now I’m a patient rep.”. Helping others keeps Tim safe and well. He recalls from time in prison: “I talked to people who wanted to commit suicide, I had to talk them out of their behaviour.” Thinking of his future, he continues: “I'm moving closer so I can help my parents with their health.” He aspires to peer-support: “They need people with learning disabilities to help other people with learning disabilities. They should have us in the benefits system, the police system and fire. They wouldn't have as many people inside. I’d love to speak out with other people to be an advocate.” A life-changing experience of moving out of hospital can inspire a person to support others. Vicki shares: “My social worker found me the best place ever. I love it so much that it’s given me the determination to help other disabled people. There are homes out there that will give you a chance and be there for you no matter what.”. Home, family and freedom Vicki reminds us that home means so much to people. Living a full life needs home, meaning ‘where I want to live’. To state the obvious, hospital is not home. This is why Jodie insists: “Make sure people have a discharge plan from the minute they go in.” Reece said from his ward: “I want to live in a place with other people and just get on with my life.” For Vicki, home, family and freedom all fit together. “Home is family, love, commitment. My freedom means I go to bed when I want. I eat what I want when I want. I go out, I go shopping.” (Picture by Vicki) Vicki, Vanessa, Gary, Adam and Omid’s stories bring us closer to the perspectives of the most unseen and unheard. ‘Care’ has at times been disturbingly uncaring. But where care is compassionate - enabling home, family and freedom - we want to say thank you to people who give themselves to work we know is rewarding, but also difficult and exhausting. When behaviours are described as challenging to services, our challenge to services is to hear the desperate cry for home, family and freedom behind the behaviour. If the only words we can share from a person’s lips are “mum, home”, may such words truly transform care, and hit home with every reader. Steve Chapman, Michael Lillis, Sammy Lamb Self-Advocacy Leadership Team Supported by and co-written with Matt Clifton and Charlie Clay This article is an adapted version of a commentary published in Tizard Learning Disability Review, Volume 25, Issue 3. The whole issue focuses on secure care. We recommend it to readers who wish to explore this complex and difficult area of care and support in more depth.