Out of sight report

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Out of sight report

  1. 1. Out of sightStopping the neglect and abuse of people with a learning disability
  2. 2. 2| Out of sight
  3. 3. This report is dedicated to the late Professor Jim Mansell CBE,who was a powerful champion for people with a learningdisability whose behaviour is described as challenging.He dedicated his working life to improving the support andservices they and their families receive, to drive up standardsand to ensure better lives and opportunities. His work andinfluence will continue.“ the moment, we are spending large amounts of At money putting people in places like Winterbourne View – very expensive services that are harming people. There is no doubt we need to take action to stop these kinds of services being used in this way as dumping grounds.”¹ Professor Jim Mansell CBE, Everybody Matters film Out of sight |3
  4. 4. 4 Out of sight
  5. 5. Contents Page 7 Actions needed 8 Introduction 11 Winterbourne exposed 14 Real people, real lives 22 Why are people sent to assessment and treatment units and other institutional settings far away from home? 30 At the assessment and treatment unit 43 Questions raised by these stories 44 What does good support look like? 48 Winterbourne – never again? 50 Time to take action
  6. 6. The care system is failing people witha learning disability and behaviourthat challenges.This report by Mencap and theChallenging Behaviour Foundationsays enough is enough.The way we support people with alearning disability and behaviour thatchallenges must change.
  7. 7. Actions needed:The government must show strong The government must carry out an The government must strengthen the law leadership and clearly set out what urgent review to ensure that funding on adult safeguarding to keep people safeeach player in the health and social arrangements do not work against the from abuse and ensure that rigorous actioncare system is expected to do within an incentive to get people out of assessment is taken against abusers and responsibleagreed timescale. It must also say who is and treatment units and that ‘economies organisations when abuse occurs.accountable for the different parts of an of scale’ don’t force the continuedaction plan. development of larger units. Commissioners must make sure that providers of care and supportThe government must start a closure The government must ensure that the demonstrate that they are capable ofprogramme of all large assessment and Care Quality Commission (CQC) has the meeting the needs of people who showtreatment units to be completed in three power to only register services that are in behaviour that challenges and that theyyears and ensure that smaller, local line with the policy recommendations in can provide the right environment andassessment and treatment units are the Mansell reports. skilled staff.integrated with local services. The CQC must conduct rigorous The government must tell commissioners inspections, involving people with ato develop local services that meet the learning disability and their families,needs of children and adults with a and not shy away from takinglearning disability and behaviour that action to deregister or enforce theirchallenges, including community-based recommendations.intensive support services. There must beno excuse for sending vulnerable peoplefar away. Out of sight 7
  8. 8. Simon Introduction “ imon spent 15 long months at Winterbourne View. S This was abuse at its worst. It happened We now know that during that time he was hit, to Simon in a country that prides itself pushed, abused and tormented. Can you imagine on its history of human rights, and it was the horror I felt when the Panorama team showed paid for by the NHS. us what was happening to my son? When the BBC’s Panorama exposed the “ hat Simon needed was more support in the W appalling abuse going on at Winterbourne residential care home where he lived – certainly not View – an assessment and treatment unit to end up in a place like that. Social services wouldn’t for people with a learning disability – a provide the funding for a few extra hours a day for wave of public outrage followed. the care he needed. So things got worse for Simon, The public may have been shocked to and he was sent to an assessment unit. From there he know that some of our most vulnerable was sectioned and removed to Winterbourne View. citizens were being systematically abused, “ e tried so hard to stop them taking him there, but W but many professionals were not. After we were stripped of our role as parents and sidelined all, this was yet another scandal about while those in ‘authority’ made the decisions for us. people with a learning disability to follow They used their power to just ship him off, sending those exposed in Cornwall and in Sutton him many miles away from home – away from the and Merton. people who love him, too far from us to protect him from the terrible things that happened. “ ou’ve seen what happened to our son. Please help Y to stop this – we must end the scandal of sending people like Simon to places where they are out of sight and out of mind, because we know what can and does happen.” Simon’s mum8| Out of sight
  9. 9. These terrible events could not have been aCornwall, 2006 surprise to the Department of Health, which Sutton and Merton, 2007 had been warned in two reports by ProfessorCare homes scandal: Abused. Catalogue of abuse in NHS Jim Mansell² of the serious consequences forBullied. Confined. Drugged. care homes people who show behaviour that challenges³The Independent, 5 July 2006 the Guardian, 17 January 2007 when they are sent to assessment and treatment units and other types of institutional‘ ulnerable people suffering from such V ‘ eople with learning disabilities had P setting that are far away from home. conditions as autism and cerebral palsy been subjected to physical and sexual endured years of bullying, harassment abuse at a hospital in London, according The horror portrayed on our TV screens about and physical ill-treatment at the hands to an investigation by the Healthcare Winterbourne was certainly not a surprise to of NHS staff, the inquiry into services in Commission. many families with sons and daughters in Cornwall found.’ similar units across the country. But for other ‘ he commission is launching an audit of T families, it was utterly terrifying.‘The Health Secretary, Patricia Hewitt, learning disability services across Englandsays steps are being taken to ensure it and will inspect 200 of them.’ “ watched this shocking programme, Idoes not happen again: “The abuse that’s through my hands in some parts, andbeen uncovered of people with learning switched off in tears when it got to thedisabilities is an absolute disgrace. It is most disturbing part – a vulnerable youngcompletely unacceptable. The Trust has woman left shivering outside on thealready taken steps to put things right in ground after being repeatedly dousedCornwall, now we’ve got to learn lessons in cold water by her so-called ‘carers’.from that and make sure this does not My daughter Chrissy is in a privately runhappen again to other vulnerable people.”’ hospital like the one investigated last night.” Chrissy’s mum Out of sight |9
  10. 10. This report tells the stories of James, Chrissy, These stories confirm the need for real andJoe, Emmanuel and Victoria. Each section lasting change. We must stop allowing peopletells a part of their stories through the words to be so far out of sight that what happenedof their families. You will hear about their at Winterbourne goes on happening to othersexperiences of not getting the right care again and again.locally, how they ended up in assessmentand treatment units, what happened to themthere and where they are now.Through their stories, this report shows howproviders, commissioners, regulators andthe Department of Health have failed toact on the substantial amount of availableguidance. It shows how they have allowedthe care system to fail its most vulnerablepeople by not developing good quality localservices for people with a learning disabilityand behaviour that challenges.Mencap and the Challenging BehaviourFoundation (CBF) hope that this reportinspires everyone involved in the care andsupport of people with a learning disabilityand behaviour that challenges to helpdemand action that will stop people beingsent away.10 Out of sight
  11. 11. Winterbourne exposed Whistle-blower at centre of Terry Bryan was the member of staff who blew the whistle ‘barbaric’ care home abuse exposé on Winterbourne. Here he explains why he did so: raised alarm last year – but was ignored by regulator“ blew the whistle because I had seen bad I send someone to a place like that. The The Daily Mail, 1 June 2011 practice and poor attitudes, staff ignoring management was inept. The training was ‘ ne member of staff trapped O people when they were distressed and the sub-standard. They recruited strong-armed patients under chairs while he sat on threats – staff saying, ‘If you don’t stop people, not caring people. The staff weren’t them watching television. A female banging your head against the wall then paid enough. There was no supervision. patient had shower gel squirted in you won’t see your mum at the weekend’. I When the safeguarding team were alerted, her eyes and was left in a freezing started recording what I saw and then wrote they didn’t act. When I alerted CQC, they garden after having a jug of cold the email. It was quite low-level stuff, but it didn’t act. What else do you do? water poured over her.’ was enough to get people suspended. “ f people want to abuse someone, they I ‘ are services minister Paul Burstow C“ took a secret camera to expose the scale It will. They will do it behind closed doors. said he was shocked by the of abuse going on. They wouldn’t have done Generally, you can’t stop it. But when they revelations and had authorised a what they were doing in front of me, as they do it in front of someone like a nurse, and series of random, unannounced said I was a ‘do-gooder’. As I watched the the nurse doesn’t do anything about it, inspections of similar units by the programme, I couldn’t believe what I was that’s the worry. That’s when it has become Care Quality Commission (CQC).’ witnessing. I thought it would just be more routine. That’s when it has become part of of the low-level stuff I had seen. I didn’t the culture and it self-perpetuates. New think it would be that extreme. staff come in and that is what they learn.”“ t was like a perfect storm – it wasn’t just I one thing. Commissioners were happy to Out of sight 11
  12. 12. The role of the CQC and others The scale of the problemThe CQC, charged with ensuring that these compliance’ and ‘failing to meet essential It would be wrong to believe that whatfacilities are up to standard, has been standards’, which betray the seriousness of happened to Simon and all the other peoplestrongly criticised for failing to act on the what this could mean. Hidden behind these who lived at Winterbourne View was isolatedinformation it had been given. There was words are stories of abuse, neglect and or confined to one provider, or even onealso great concern when it emerged that the appalling care – of loved family members type of provider. In the months that haveCQC had inspected Winterbourne View prior whose lives have been irrevocably damaged. followed these appalling revelations ofto the Panorama programme and concluded abuse, the CQC has investigated all similar But simply to blame the CQC for notthat the service met its standards. units and a number of social care residential identifying and acting on abuse and poor services across the country. What it foundWhen we looked at the CQC inspection practice lets everyone else off the hook. was shocking:reports for the services where the people Commissioners and providers need to befeatured in this report resided, we were very delivering appropriate local support and 50% of the services were not only failingconcerned to see that, like at Winterbourne services. They have a key role to play, both to meet standards around care andView, most of these units had been found to in developing a positive culture, where staff welfare, but also failing to meet standardsbe compliant, but the actual experiences of have the right skills and attitudes, and in around protecting people from abuse.those in the units tell a very different story. monitoring their services on an ongoing A review of this CQC data4 showed that: basis. It should never get to the stage whereWhile the 150 CQC inspections conducted abuse and poor practice are allowed to o nly 14% of people residing in the 72after the events at Winterbourne appear to become embedded. Responsibility extends inspected units were in places that fullyhave been much more rigorous than previous beyond the role of the CQC. complied with the standards inspected.inspections, building confidence in the CQCand its ability to detect and act robustly on The CQC inspections confirm that poorabuse, neglect and poor practice will take practice and putting people at risk of abusea long time. This is not helped by the bland is widespread.words used in its reports, such as ‘non-12 | Out of sight
  13. 13. The government reviewChillingly, Terry’s account reveals that when There can be no question that there are the headlines? The fact is that well-meaninghe blew the whistle, it was on what he widespread systemic failures in the care policy statements are simply not enough5.describes as the “low-level stuff”. It goes on and support of people who show behaviour The government must accept responsibility,to describe how shocked he was to see what that challenges. take leadership and use all the levers atthe secret cameras revealed. While some its disposal to achieve the fundamental It is over one year since the events atlevels of abuse and neglect can be easier to changes that are needed. Otherwise, the Winterbourne were exposed and a seriesidentify and prevent, others are more hidden. sort of abuse seen at Winterbourne View, of investigations and reviews has been Cornwall, and Sutton and Merton willThis presents a serious challenge to everyone conducted. The CQC has now published its continue indefinitely.involved in the commissioning, regulation report on its inspection programme, and theand provision of care and support of people government has released its interim report, The ultimate test of the government’s finalwith a learning disability and behaviour that which sets out the actions it believes are recommendations is whether it will takechallenges. There are three crucial questions needed to address failures across all parts the necessary steps to improve the livesto consider: of the system. of people like those in this report: James, Chrissy, Joe, Emmanuel and Victoria.1. re we developing the right support A All the reports agree that far too many and services? people are being sent away, to assessment and treatment units and other institutional2. hat rigorous practices and processes W settings, and that they must be better must we put in place to ensure that protected and supported. There is no doubt the risk of poor practice and abuse is that the government’s final report will also minimised? set out the lessons learned and how practice needs to improve.3. ow can we effectively identify and deal H with it when it does exist? But will it just join the list of reports that have come before, each one barely gatheringClearly no one can be complacent – no one dust before the next scandal of abuse hitscan afford to say “it never happens here”. Out of sight | 13
  14. 14. Real people, real lives Who are they?In this report, families whose loved People who show behaviourones have experienced poor care, that challengesneglect and abuse in all parts of thesystem tell their stories. They are just Each person in this report has the same person’s or other people’s quality of life, thosea few of the many that could be told. needs and feelings as anyone else. They who care and support them may find it veryThey show how the system fails to are someone’s son, daughter, brother or difficult to cope and respond appropriately.properly support and protect those sister. They each have a learning disability, For example, someone with a severe learningwho show behaviour that challenges. and they are also described as showing disability and very limited communication behaviour that challenges. It is important to skills may not be able to tell others that they understand what this means: have a sore ear, that they are thirsty or that ‘ ehaviour can be described as challenging B someone has hit them and they are afraid. when it is of such an intensity, frequency If they are not cared for by people who or duration as to threaten the quality of know how to support them, this is when the life and/or the physical safety of the behaviour that challenges can be triggered individual or others and is likely to lead or worsened. to responses that are restrictive, aversive We know that when people are living in an or result in exclusion.’6 environment with staff who have the skills to Behaviours that challenge can include support their behaviour and communication aggression (eg hitting, kicking, biting), needs, their behaviour that challenges can destruction (eg ripping clothes, breaking often be reduced or eliminated altogether. windows, throwing objects), self-injury (eg head banging, self-biting, skin picking) and many other behaviours. When the behaviour puts the safety of the person or others in some jeopardy, or has a significant impact on the14 | Out of sight
  15. 15. People who may needassessment and supportIndividuals sometimes experience crisis Many people are admitted to assessment and All too often, these extremely expensive units,situations that may require specialist treatment units, and then detained under some run by the NHS and many others by theintervention. At these times, what is needed a section of the Mental Health Act 1983 private healthcare sector, are simply beingis a good assessment of the cause of the (MHA). This is sometimes referred to as ‘being used as dumping grounds by commissionersproblem, followed by a treatment plan to sectioned’ or ‘sectioning’. While this may looking for an easy ‘solution’ at any cost. As aaddress those issues and access to good sometimes be necessary, there are concerns result, people can be sent many miles awaysupport that is close to home. that detention under the MHA is being used from home and then left for many years too frequently, often in circumstances where without any prospect of leaving.It should rarely be necessary to admit a it is perceived as the last option, where localperson to an assessment and treatment services have broken down and there is no None of the people in this report (or theunit. When it is necessary (for instance, when other alternative. hundreds of others like them) should havesomeone may have a complex mental health been sent to places where they were out ofcondition), it should be to a small unit that Too many people are being sent away to the reach of their families and where theyis close to their home. The facility should be assessment and treatment units and other were not only denied the help they needed,able to provide specialist assessment and institutional settings that are too large but also neglected and abused.treatment, and enable the person to return and too far from home. Sometimes, theseto their local community as soon as possible. units do not actually provide the quality of specialist assessment and treatmentA very small number of people with a learning services that is needed. Often, people withdisability need secure forensic services, such a learning disability end up in these placesas those who have committed a serious unnecessarily, because the right option foroffence like arson or sexual assault. Mencap them is not available locally or becauseand CBF’s background policy paper7 explains local services do not possess the skills tothis in more detail. understand the cause of their behaviour. Out of sight | 15
  16. 16. People at risk of abuse People in this reportPeople with a learning disability are known to The people in this report, like so many others The first section of the report introducesbe at greater risk of abuse than the general who show behaviour that challenges, did James, Chrissy, Joe, Emmanuel and Victoriapopulation. Despite the fact that those who not have their basic health and social care – each a member of a loving family and eachshow behaviour that challenges are viewed needs met. They experienced the overuse of with an important story to tell.as being at an even greater risk of abuse, medication, excessive use of restraint andthere has been surprisingly little research seclusion, and were physically harmed byinto just how prevalent this is. However, it is other service users and staff.clear that they experience many situations Here, in an article on restrictive physicalthat are abusive. interventions and people with a learning ‘ t is completely unacceptable that so I disability, the experience of service users in many people with learning disabilities in institutions are described: the UK who show ‘challenging behaviour’ are prescribed long-term antipsychotic ‘ Individuals spoke about staff using ‘ You squeal and squeal but a range of punishments including medication. We know these drugs can have seclusion; withdrawal of food and drink; they just hold you down’8 serious side effects. There is little evidence physical punishments such as hitting or that they help people with challenging pulling hair; mechanical restraints; and behaviour, and we know that many people other abusive practices such as cold or can be taken off these drugs without dirty baths and the forced wearing of adverse effects. For organisations to nightwear all day.’9 continue to overprescribe these drugs in light of this evidence should be considered an example of systemic or institutional abuse.’ Statement by Professor Eric Emerson16 | Out of sight
  17. 17. JamesJames experienced many years of abuse has a severe learning disability and autism,and neglect while living in places that were he mostly communicates through his bodynot right for him. It reached crisis point, language and behaviour.and he was sent to the unit he is at now, James is now 38 years old. His distress andwhere he has been seriously abused by behaviour has grown worse over the yearsother residents. because of everything he has been through.When our much-loved son James was a little He now finds a lot of situations challengingboy, he struggled to understand the world and his behaviour will reflect this. As a resultaround him and was unable to communicate of poor care and abuse, his destructivewith others. But all who knew him liked him, behaviours have become more extreme, andand some even came to love him. When a now he will also strike out at people he findssupport worker at his school was about to threatening. When things are really bad, hemove to a new job, she said to him: “James, self-injures. Much of his behaviour can beI love you.” James, who normally never prevented if people support him well.speaks, replied: “I love you.”As a child, he was extremely hyperactiveand managed to survive on just a few hours’sleep each night. The slightest thing couldmake him very angry. He expressed this indestructive behaviour, but he never oncesought to hurt another person. He reallyenjoyed physical activity and music, and hada delightful sense of humour. Since James Out of sight | 17
  18. 18. Chrissy Deeply worried that Chrissy wasn’t getting She will gouge at her skin and rip her hair the right medication and support where she out, causing herself severe injuries. Once she was living, her family welcomed her going even broke her foot during an outburst. It’s into an assessment and treatment unit. very distressing to see her when she is like But they don’t want her to remain there this, but when she does get the right care permanently. When she comes out, they and support, things can be very different. want her living in the right place for her, Sadly, Chrissy has not always received the with staff who can support her properly, right support, and many difficult things have with the input from medical professionals happened to her because of this. We hope that she needs. her story helps show how crucial it is to Chrissy is 28 years old and a much-loved change the way people get support. sister and daughter. If you could only see the Chrissy we know and love! She can be a real charmer – full of a sense of fun, someone who enjoys laughing and interacting with others. She has a moderate to severe learning disability, autism and epilepsy, as well as behaviour that challenges. Since she was a little girl, she has had frequent outbursts where she just won’t stop screaming – she’ll pull her clothes off and lie on the floor self- injuring. The outbursts can be very intense.18 | Out of sight
  19. 19. JoeJoe had been successfully living with a he has said. They must not try to pass it offfriend in supported living, but he became with saying: “Ok Joe, yes mate,” if they don’tunsettled when the manager and other understand what he is trying to say, as Joefamiliar members of staff left. Nothing will become frustrated and upset by this,was done by social services to change his which will lead to incidents happening.support despite his family’s requests. Afteran incident, he was detained under theMental Health Act and sent to a unit130 miles away from home.Our son Joe is 36 years old. He’s a boisterousperson, with a wicked sense of humour. Heloves being out and about, and he has a bigfamily who love him to bits.Being at the unit means he hardly getsto see his three nephews, as they are tooyoung to visit. He misses them and talksabout them constantly.Joe has a severe learning disability andbehaviour that challenges. He doesn’t usemany words.When communicating with Joe, staff needto listen to him and repeat back to him what Out of sight | 19
  20. 20. Emmanuel After leaving school, Emmanuel was sent to he needs, Emmanuel has lost many skills. a residential care home where they didn’t He doesn’t play football any more, and he understand his needs. His mother raised finds it difficult to move his feet when we concerns, but they failed to put the right encourage him to try and play. support in place. His behaviour worsened, and within six months of leaving school, he was detained under the Mental Health Act and sent to a unit far from home. My son Emmanuel is 20 years old. He has autism and a severe learning disability, and can show behaviour that challenges if he gets stressed. Emmanuel has a smile that lights up a whole room when he is happy, and he loves live music. He used to enjoy painting and cooking with me in the school holidays. He also used to love playing football. Emmanuel went to residential school up until the age of 18. The staff at school did lots over the years to help him build up his skills, but over the last two years, since leaving school and not getting the support20 | Out of sight
  21. 21. VictoriaVictoria has spent a large part of her adult If she doesn’t know what is going on, shelife in a range of placements difficult to will get very agitated. She picks up on vibes.visit. Frequently, her basic needs have been If someone is apprehensive, it makes herneglected or not understood and in the last anxious. If her sister comes in dancing andbut one unit she suffered abusive restraint. giggling, she will respond well and danceShe is now in a residential college where and giggle too.she is being rehabilitated and her family Victoria is sociable, likes cups of tea andhope that eventually she might be moved going out for meals. She can be affectionateto a well run place closer to home. and funny and can form strong bonds withMy daughter Victoria is 41 with a moderate people. Some staff have been brilliant withlearning disability, autistic tendencies and her. She is a good judge of character – herwhat is sometimes termed challenging approval is a good recommendation. Webehaviour. A double whammy for Victoria communicate by signing and talking atis that she is also deaf. She picked up basic the same time. We also write for her. SheMakaton sign language in ten hours in junior loves the Muppets and it is a ritual whenschool and when she was in a unit with deaf she comes home, to chill in the evening andpeople using level two British Sign Language watch a Muppet Show.(BSL), she understood that too. You would besurprised to know how frequently the staffwho have worked with her have no signingskills at all. There is no excuse for this.We can normally work out why Victoria iscross and displaying challenging behaviour. Out of sight | 21
  22. 22. Why are people sentto assessment and Jamestreatment units andother institutional When James left residential special school, as an untreated bleeding stomach ulcer, there were no assessments or advice were ignored. They only agreed to takesettings far away from social services. All we were told was him to the doctor when we threatened that there were no local services or to go to the local authority about it.from home? support available. Crucially, staff didn’t know how toThe path that took James, Chrissy, Eventually, a residential care home was manage James’s behaviour. It was aJoe, Emmanuel and Victoria so found, but it was some way from his vicious circle, where the lack of goodfar from home is a complicated family home. Before long, we found him support made him more anxious, whichone, but their stories have much with untreated injuries and suspected then caused his behaviour to get worse.in common. he was being abused. We also suspected Restriction and restraint became the he was being locked in his room at night. order of the day. We found out that at After we complained, a local inspector one point he had been restrained by five of services found there was inadequate people for 20 minutes until he ‘calmedNot getting the right heating in the home and the residents down’. We know how very frightened hesupport locally were not being properly fed. would have been by this.The guidance shows how to successfully James was moved to another caresupport individuals with complex needs10, but home that was also far away, and stillall too often it is not being put into practice. there was no proper assessment of his needs. The home claimed expertise inJames’s, Emmanuel’s and Victoria’s families supporting people with autism, but weexplain what can happen when assessment saw little evidence of this. James wasand support is not available locally. neglected, and his health issues, such22 | Out of sight
  23. 23. EmmanuelAfter leaving school, Emmanuel was – they didn’t understand his autism.moved to a group care home. It was To access food he had to be sociable,the wrong place for him – no proper which he didn’t like, so he stopped eatingassessment had been done and the three meals a day. On one occasion, hehome just didn’t match his needs. Even physically turned the table up. That wasthough I’d suggested he go to a local him saying he couldn’t live like this.care home with more experienced staff, Because the home was so noisy,social services just wouldn’t listen. I think Emmanuel was spending lots of the daythey thought it was too expensive – they in bed and most of the night awake.wanted a cheaper option. The placement was breaking down forIt became clear after two or three months the staff and for him. His behaviour wasthat the care home wasn’t working. getting worse, and he was repeatedlyThe staff weren’t used to someone with inflicting injuries on himself. I asked themEmmanuel’s needs. I tried to suggest how to move him, but they ignored my request.they could better interact with him, but They said they would bring someone inthey didn’t listen. to assess him. A psychologist did come round, but because Emmanuel was in bed,Emmanuel doesn’t like big rooms withlots of people in them, but that’s where she never saw him. I asked them to put a “ ther staff left, and the O behaviour support plan in place and to dohe was spending all of his time. The TV a proper assessment of his sensory needs, agency staff who camewas on all day, and the noise was just but none of this took place. in just didn’t know howtoo much for him. It was also a ‘houserule’ that everyone had to eat together to engage with him” Out of sight | 23
  24. 24. A history of failed placements Victoria The fight for the right support often starts in childhood. An ongoing battle to find the right school, combined with the lack of good Victoria has not had an easy ride. support for the family, can mean that the Her father died just before her ninth only option is residential school. As the child birthday and there was a lot of family becomes older, families must struggle to find stress. She was expelled from the the right support for them as an adult. local special school about three years later. She went to a ghastly residential school, a five-hour train journey away. “E very time a placement has broken There was no signing whatsoever, but down, we’ve asked for her to be lots of medication. I insisted they take her off medication after the summer moved somewhere nearby” holidays before the new Christmas term. They said that her behaviour had As one emergency leads to another, families deteriorated anyway while on drugs, become exhausted and frightened for their which shows what a weird illogical loved one. As one unsuitable care provider is attitude exists towards medication replaced by the next, they eventually run out and the vulnerable. She was thirteen, of options. lonely and bewildered.24 | Out of sight
  25. 25. JamesWhen James moved into adult services Of course, as our concerns grew across the he would spend the next seven years.when he was 19 years old, things went three years he spent there, we asked that Again, this was many miles from home.downhill very quickly. Those who know he be moved away from another resident Although there were occasional periodshim have seen the way his behaviour has who was bullying him – this request was when the management and staff weredeteriorated. Failed placements, the lack dismissed. Things came to a head when good, for the majority of the time thereof appropriate support and the abuse James became extremely anxious – he was unskilled and inadequate care.he has been subjected to have all made reached such a distressed state that he There was also inappropriate behaviourhim increasingly angry and frustrated. He had a breakdown and was admitted to an from staff and neglect that amountedhas developed a number of challenging assessment and treatment unit. to abuse. He was also given medicationbehaviours, and he has been labelled that was not needed. After our localaggressive and violent. On top of the trauma he had endured in authority failed to make good on their previous placements, they found that he hadJames had an awful experience at promise of commissioning a local service, an untreated urinary tract infection. Thisthe first care home he was in, but the we spent many months searching for an would have caused him considerable pain.second home was just as bad, if not alternative. Eventually things deteriorated He also had an untreated chest infection. Byworse. Not only were the staff a huge so badly for James that we felt we this time, James had lost a stone in weight,problem, but James was bullied by other couldn’t wait any longer – he had begun but at last he was getting properly assessed,residents. Living with other people who self-injuring. We were so concerned that although it could all have been avoided if heshow behaviour that challenges was we felt there was no choice but to have had received proper assessment and supportvery damaging for him. It meant he was him admitted to the specialist learning in the first place.constantly living in fear and anxiety, disability unit where he still lives.and he began to copy other people and Six months later, James was discharged anddevelop new challenging behaviours. sent to another residential care home where Out of sight | 25
  26. 26. Chrissy After leaving school, Chrissy moved into that her neurologist and psychiatrist a residential care home near us, where worked together as the medication the staff were good and understood how affected her seizures, but this didn’t to communicate with her. She got lots of happen. In the end, after an alleged attention because it was a new service, attack on a service user, she was asked and she was the only person there at the to leave the service. beginning. Her medication was working well, and although she still had outbursts, After another placement broke down due “ lthough there were A to inadequate medical support, it was crises were avoided. suggested she go into an assessment and occasional periods when But things began to deteriorate. Three treatment unit. We were supportive of this the management and other women moved in, and then the – we just wanted her to be safe. She was staff were good, for the service moved to a different location in a terrible state when she arrived at the – the new place was much too small. unit – she had bald patches from pulling majority of the time Around the same time, Chrissy had to her hair out and was covered in bruises there was unskilled and change medication as tests found her and abrasions from self-inflicted wounds. inadequate care” blood count was dropping. The new medication caused her to gain weight and become ‘zombie-like’ – it changed her into a different person. We said: “This just isn’t Chrissy”. The psychiatrist agreed to change her dosage, but they couldn’t get the balance right. It was important26 | Out of sight
  27. 27. Victoria Other families will recognise this as what has become an all too familiar story: when local services fail to offer the right support, theirAs Victoria got older, she experienced about the age of 16, at the respite place loved one is sent to one unsuitable placeother residential placements that didn’t where there were no outings and a great after another and, step by inevitable step,support her in the way that she needed. deal of bored frustration, she became the family slowly loses control.She was offered a place at a specialist more aggressive and upset. She startedsigning unit closer to home but the offer ripping her clothes. There was quite awas withdrawn. So it was decided she violent fellow client there – I don’t thinkwould be sent to another unit instead. he hurt her but he could have outburstsHer favourite staff at the place where that had an effect on Victoria. “ n the various places she Ishe was were told to trick her in order has lived, her aggressionto get her there. They told her that shewas going on holiday. She was taken on has been learned; I hopea nine-hour journey and left with people it can be unlearned”who had no signing skills and who hadnever met her before. This has not helpedher sense of security. Imagine how shemust have felt.So many sad things have happened toVictoria. In the various places she haslived, her aggression has been learned; Ihope it can be unlearned. When she wasat the junior school, the headmistressremarked on how gentle she was. After Out of sight | 27
  28. 28. A crisis response Joe “ ectioning our son was not only S inappropriate but also cruel and abusive. He has a learning disability and autism, For 18 months, we had been voicing our he would have been very confused. no language and limited understanding concerns about the quality of care Joe The following day, Joe was sectioned. – he would not have understood in any was getting. In the end, there seemed The doctor who came round actually way what was happening to him. He was to be one incident that resulted in Joe questioned whether it was necessary driven miles away to a totally new place, being sectioned, which there was just no for Joe to be sectioned as he seemed unlike anywhere he had been before, and need for. Joe had been living happily for calm and stable, but the social worker left with strangers. He had no contact many years with his friend. His behaviour pressed for it. Once he was sectioned, with us, his own parents, who have been had got worse, but this was clearly him we lost control. the one constant in his world. It would communicating that he was unsettled have been terrifying for him.” A parent and unhappy with the many different staff coming into the house to support him. The change was too much for him, and the staff didn’t have the skills. An inexperienced member of staff was in the house with Joe and this made him anxious. He asked to go in her car. When she said no, he got repetitive and demanding, so she locked herself in the kitchen and rang the manager. Joe was left in the hall and couldn’t get into the kitchen. He didn’t understand what was happening or why she had done that –28 | Out of sight
  29. 29. EmmanuelSome families describe the detention of theirfamily member under the Mental Health Actas a sudden and unexpected event. Others Three months after I had voiced my The emotional cost of this experiencesuggest that services viewed meeting their concerns and with no proper intervention, to Emmanuel and us has been huge.son or daughter’s needs as too complicated Emmanuel was suddenly sectioned and The financial cost to the state has alsoand that admission solved a problem for moved to an assessment and treatment been excessive. I still cannot believe howthe service. unit around two hours’ drive away. I expensive the unit was.People should only be detained under the first heard about it after he had beenMental Health Act when they meet the admitted to the unit. I had visited him thespecific criteria for detention, and families day before at the care home, and no oneshould always be informed of their rights had told me this was planned. They hadonce the person is detained. already decided it would happen following an incident about four days prior whenBut families report they are often uninformed, Emmanuel had been physically aggressiveand that when this happens they feel like to a female carer in the garden.they have lost control. The signs that the placement wasn’t working were all there. I had asked them to move him or at least to put the proper support in place – this never happened. Emmanuel, a young man only six months out of school, was then sent to a unit far away from his family where he remained for over 18 months. Out of sight | 29
  30. 30. At the assessment James Chrissyand treatment unitThe stories all show how desperate theirfamilies were to get them the right help. When he arrived there, James was in Chrissy went to an assessment andThough faced with the prospect of their son a very bad state. He was very troubled, treatment unit because she wasn’tor daughter being sent to a unit, often many withdrawn and had been refusing to getting the right medication andmiles from home, their strong hope was that eat. He was totally insecure. For the support she needed in the community.this admission would be for the best. first few months, things went well. In the end, we were just desperate And with much work from skilled and for her to be safe and hoped that“ are and treatment is the C caring staff, there were some positive professionals in the unit would get her signs of progress. medication right. We didn’t want her to last thing they gave her” be there long-term – we want her back near us. If she was in a local serviceSurely a thorough assessment was exactly where the staff knew what they werewhat was needed? With a treatment plan doing, then I would feel happy that shethat would enable much-needed behaviour was safe, but this has not happened yet.support to be put into place. Maybe this couldbe the start of better times ahead? They wereright to expect this, and there are many unitsthat provide exactly that.Certainly for James and Chrissy, their parentsinitially welcomed them going into the unit.30 | Out of sight
  31. 31. Getting assessment andtreatment in the unit Chrissy ‘ What works best is used least, and what works least is used most.’11 It hasn’t been ideal. The main reason Professor David Allen Chrissy went into the unit was to getAssessment and treatment units report her medication changed successfully.that they can find themselves dealing This seems to be happening, butwith issues, such as missed symptoms of it took them a year to start doingphysical ill health, that really should have anything. Initially, she did not getbeen identified by community services. A the careful monitoring that we’dpsychiatrist from one unit gave an example hoped for. The way they found outof someone being admitted with behaviour it was better for her to stop taking athat had become very challenging, but within particular drug was because they hadhours they found he had six deep cavities forgotten to give it to her!in his teeth, causing him extreme pain.Following treatment for this, he was back tohis old self.It is even more concerning that somefamilies report that people are admitted “ nitally, she did not get Ito these settings but not actually assessed the careful monitoringor treated. that we’d hoped for” Out of sight | 31
  32. 32. Being so far from home Victoria For families, leaving their son or daughter in a place so far from home is the first of many challenges they will have to face. We have a lot of issues about her medical we were told this had happened ten days care. There has been a catalogue of errors, previously. They hadn’t bothered to let misjudgement and often indifference. us know. We now find that she is blind in Victoria’s physical health has continued that eye and we are trying to organise for to deteriorate. There have been ongoing her to have it operated on. health issues since 2008. Victoria broke her ankle at one placement and we did not think it had healed properly but they said it had. Last November, the current placement took her to AE and found she had an unhealed fracture in her foot. She also only had the first x-ray on her knee in 2012, despite it being a problem for the “It’s a five-hour round trip” last four years. There were a further two separate incidents where she lost two front teeth both times. We were promised an urgent report by the manager but we didn’t receive it and the manager denied saying we could have one. More alarmingly, when Victoria came home at the end of 2010, to our horror, her eye had gone bright green –32 | Out of sight
  33. 33. Institutional and poor care Joe It soon becomes apparent to families that the standard of care may be poor and not The CQC programme of inspections of person-centred. There is also a risk of the 150 hospitals and care homes for peopleJoe was sectioned and sent away to individual losing skills and becoming less with a learning disability in 2012 foundan assessment and treatment unit independent than they were before. that many of the services were not130 miles from where we live. It’s a meeting essential standards around carefive-hour round trip. We agreed to and welfare:drive him there after he had beensectioned. It was heartbreaking ‘When speaking to staff about two carehaving to leave him there. We visit plans, they agreed that they were notJoe every other weekend, but in the actually accurate.’13winter we can’t visit because the unitis in a very isolated area and there is ‘We found that staff were very controllingtoo much snow. in their attitude. Examples of this approach included adherence to ‘houseIt breaks our heart when we’ve ‘ he risks associated T rules’ that were routinely given asspoken to him on the phone.Sometimes he’s been upset and with congregate, explanations about patient’s choices, care and treatment, and restriction tocrying, but there was nothing we institutionalised services food and drink.’14could do. Joe doesn’t understand how and poor-quality carefar away he is. He doesn’t understand ‘We found the high security environment,that we can’t just pop round. remain as relevant today noise levels from panic alarms and the as three decades ago’12 two-way radios, and strict adherence to perceived house rules created a highly charged atmosphere.’15 Out of sight | 33
  34. 34. JoeInspections often fail to identify the poorquality of care and abuse in assessment andtreatment units. When Joe was at the unit, It has not been good for Joe being at the When we go to see Joe, we always see thean inspection found the service was fully unit. It is a real ‘institution’ with 26 beds. same faces – people seem stuck there. Wecompliant with all the essential standards of There are set times for things, and everything have been fighting to get Joe out since hequality and safety: ‘People who use this service revolves around set activities. This is the got there two years ago. We never see anywere viewed as individuals, and their needs for opposite of what Joe was used to. Previously, other visitors, so we don’t know whetherprivacy and dignity were respected by staff.’ he was living in his own place with a friend anyone else is fighting for the others. and doing the activities he enjoyed. Who’s putting pressure on their local authorities and primary care trusts (PCTs) Being in the unit has de-skilled Joe. When to get them out? he lived in his own home, he tidied and vacuumed with the right support. He also made sandwiches for himself. He can’t do anything like that now – he’s not allowed to. When we visit Joe, we often find that his clothes have gone missing and he is wearing other people’s clothes. He often hasn’t had a bath or a shave. Joe needs full support around personal care and choosing his clothes, but he isn’t getting this. He used to like looking trendy, but now he doesn’t care. It’s really upsetting to see.34 | Out of sight
  35. 35. The risk of abuse and neglect Victoria The CQC programme of inspections of 150 may start to notice things such as a strange hospitals and care homes for people with bruise on their loved one’s face. They talk to a learning disability found that many were staff, who just say that the person is clumsyWith regard to other indignities, not meeting essential standards around and it’s nothing to worry about. But theyVictoria’s clothes have frequently been protecting people from abuse: know that something is badly wrong.locked up. The first time this happened, A CQC inspection undertaken in 2010 foundit affected her behaviour because she ‘ he patient went on to tell us that they T that James’s service was compliant with thestarted to throw her clothes on the did not have a good relationship with essential standard around safeguarding. Thisfloor whereas previously she would some staff, “Some of the staff are nasty would have been around the same time thathave put them away. One unit sent her to me, they put fingers up to me. These James was being assaulted.home with a hole all the way through are male members of staff.”’16her shoe. We complained to the localauthority (LA) and were assured that ‘ fourth patient told us, “Staff pretend Athe manager personally inspected her to be polite when there are visitors.”’17shoes every morning. Yes, they really didsay this. Good job we took a photograph,not to mention we kept the actual shoe! “ n the unit they were IThis is trivial compared with some other abusing their power,things but it shows how dismissive the and it is simply barbaric”LA was, even when we proved our point.On one visit, we heard a member of staffspeak very aggressively to one of the Worst of all, families may sometimesother residents. We raised this, and from start to see a deterioration in behaviourthen on we were not able to visit her and experience the growing sense thatroom and could only see her in a family something is not right. Even though their sonvisiting room. or daughter can’t tell them what is going on, they know that something is wrong. They Out of sight | 35
  36. 36. James A CQC inspection report, which was conducted five months after Victoria left the unit, found the service was meeting all the essential After James arrived, a good manager We were appalled that we had been standards of quality and safety. It said: left their post. This person had done a kept in the dark and demanded to view good job of developing a culture focused James’s records. These revealed that ‘ atients were safe and had their health P on positive behaviour support. When James had been physically and sexually and welfare needs met by competent staff. this person moved on, things started to assaulted by other patients in the unit. He Staff were supported through training and deteriorate badly. James couldn’t phone had also received numerous ‘unexplained supervision to give the care and treatment and tell us what was going on in the unit injuries’, such as finger lacerations and patients needed.’ because he is unable to speak. bumps on his head. We were shocked at the lack of concern about such incidents, It was impossible for us to determine if which were described as minor in the the increase in his challenging behaviour records we saw. It was only much later, was his way of telling us that something after we complained, that these incidents was wrong. Suddenly, a large number were referred to the safeguarding team. of staff left, and we became so worried that we contacted the CQC and found out about some serious safeguarding issues. There was evidence that criminal assault, verbal abuse and institutional abuse had occurred in the unit. We were told that these incidents had not involved James, but whether or not he had witnessed them was unknown.36 | Out of sight
  37. 37. VictoriaSecrecy, deceit and lies have occurred aggressive to other clients – prior to this they “only restrained her four or fiveat some units. At one unit, Victoria lost placement, this was not the case. They times per week”. I wonder how manyher second front tooth. The first loss had had deliberately covered up that another times they were restraining her before ifbeen her fault at a previous placement client had punched her in the mouth; she they thought four or five times per week– she had damaged the roots by self- had learned more aggression from fear was not a lot. When we asked them this,aggression over a period of time. After and she was put at risk by putting her in they refused to comment. Restrainingthis, she had been noticeably careful not the same section as this aggressive client. deaf people takes away their ability toto repeat the experience. We were told it When Victoria was removed from danger communicate, which is barbaric andwas self-harm. However, we discovered and put in a place by herself, she was completely unnecessary.the truth. Her sister was worried because calmer and happier. At home, we never restrain her. If wewhen she leaned over towards Victoria, We discovered that, in Victoria’s last but hold her hand and make eye contact,she flinched as though about to be one placement, she was being restrained we can calm her down. In the unit, theystruck. That got us thinking and, on – they had not disclosed this. I found were abusing their power – it was simplyphoning the unit to ask if anyone had out at a tribunal meeting a year after barbaric. There was no proper strategybeen hitting Victoria, we were informed she was sectioned that five people were in place for managing her behaviour,by a worthy individual: “Well, she was holding her down. The tribunal was not and they hadn’t done a proper riskpunched in the mouth by X”. When very sympathetic to this unit and asked assessment that took her health issueswe enquired higher up, the director of how her mother managed to take her into account. They do not use restraint atnursing was duly outraged. “Who told out on her own and her family did not the college where she is now. This provesyou?” he blustered indignantly. need to restrain Victoria while at home. that the need for restraint for Victoria isSignificantly, their own records had In July 2010, Victoria was given notice nonsense. She should never have had toindicated that Victoria had become to leave and we were informed that now go through this. Out of sight | 37
  38. 38. How do they get out?Problems surrounding the discharge and The CQC’s recent inspection programme between health and social services, andtransfer to an appropriate support service found that one person had been living in an while the battles go on, the impact on thenear home seem common. assessment and treatment unit for 17 years. individual is forgotten and they remain completely stranded. In James’s case,Most people agree that any admission to There are no circumstances where this can this has been for five years.an assessment and treatment unit should be appropriate and yet, in a CQC inspectionbe time-limited and should include an report from 2011, the inspector seemed In the stories below, it is also incredibleappropriate assessment, a treatment plan to think that remaining at the unit was a that parents and families are oftenand timely discharge. Many units report that positive thing: expected to find alternative provision forthey start to plan the discharge of the person their son or daughter. This is a failure by ‘ he manager and deputy manager Tas soon as they are admitted. However, the the NHS and social services to carry out their were able to tell us about many positiveevidence suggests that people are spending legal responsibilities. experiences of patients since being herefar too long in these units. and were pleased that placing authorities had continued with and in some cases“ t has been a horrendous I increased the length of stay for some two years as we just patients due to the positive progress haven’t been able to being made.’ get Joe home” The stories of James, Chrissy, Joe, Emmanuel and Victoria illustrate this evidence andThe CQC Count Me In 2010 census looked show how hard it is to get discharged andat providers of inpatient learning disability negotiate an appropriate package of supportservices. It found that 67% of all patients in closer to home. The funding arrangementsEngland and Wales had been in hospital for that are currently in place in many areasone year or more, 53% for two years or more can work against the incentive to get peopleand 31% for more than five years. out. Funding disputes seem to be common38 | Out of sight
  39. 39. James ChrissyJames remained in the specialist learning package. However, the fact is that he Chrissy is still in the unit after twodisability unit for five years. remained 150 miles from home, too far years, as there has been a funding away from the people who love him, for dispute and claims that there is no localFollowing the safeguarding investigation, five years. provision that could meet her needs.the unit has been adapted so thatthere is now a single-person service for Her medication changes shouldJames within it. In an improved physical be completed soon, so we need toenvironment and with staff support start planning her future placement,tailored to his needs, James’s challenging especially as we know it could takebehaviour has greatly reduced and things about a year to find somewherehave slowly improved. suitable. The commissioners were refusing to start planning because ofBut James should never have been placed a dispute over which area will fundin the unit to begin with – it would not Chrissy’s package of care when shehave been necessary had he not been leaves. They are still not starting toleft in an obviously failing placement. plan, despite me involving a solicitor.A year after he arrived, we were told This is the fourth time I’ve had tohe was ready to leave. But since then, involve a solicitor because of problemsfour years went by while the authorities getting the right care for Chrissy.argued over the funding package neededto bring James back to where he belongs.Finally they have agreed and we havefound a house for James where he canlive independently with a 24-hour care Out of sight | 39
  40. 40. Emmanuel Emmanuel spent 19 months in the hospital and never coming home in two assessment and treatment unit but years has damaged his confidence. has now moved to a small residential He is slowly getting to know his care team care home in our local area. He had to and his communication is improving. He stay at the unit six months longer than has even managed to do a little cooking necessary as there were disagreements with them. about where he should go. It was initially proposed that he move to a 12-bed facility even though the psychiatrist from the unit recommended that he live with no more than three people. Emmanuel’s social worker said she didn’t have to follow the recommendations. In the end, “ e had to stay at the unit H I took legal advice and, following this, six months longer than the local authority backed down. necessary as there were Emmanuel left hospital seven months disagreements about ago and his quality of life is slowly improving as he has moved into a small where he should go” residential placement, near my home. Emmanuel is still housebound in the home as the effect of a long spell in40 | Out of sight
  41. 41. JoeJoe has been in the assessment and decorating the property, and now it’s alltreatment unit for the last two years. ready for Joe. We’ve interviewed staff,Just before he went into the unit, it was and they’re now completing their trainingconfirmed that the PCT would fully secure and getting to know him. The date forhis package of care when he leaves. him to move in has been agreed after lotsBecause of this, the local authority of pressure from us, so hopefully he willhas not helped us look for somewhere be in his new place soon.suitable for him to move on to. We have It has been a horrendous two years, ashad to find a provider we are happy with we just haven’t been able to get Joeand contact housing providers to find a home. At times, we thought we wouldsuitable house for Joe. never get to where we are now. I’mAt the advice of the psychologist at the worried about how he is going to cope “ t was left to us to sort all Iunit, Joe is moving into a single-person with living alone with just two membersservice. We were concerned about this at of staff, having been in an institutional this out. Had we not beenfirst, as we don’t want Joe to be isolated, setting for two years. I think he’s going doing it ourselves, nothingbut we have agreed it might be best, at to find it hard to adapt, and it will take would have happened”least to start off with. It was left to us to time for him to relearn the skills he’s lost.sort all this out. Had we not been doing it We find it very distressing that Joe willourselves, nothing would have happened. have to adjust to ordinary living because he was left in an environment he shouldIt was a real struggle to get the PCT to never have been in.agree to it all. After a year of hassling,they eventually agreed. We’ve been Out of sight | 41
  42. 42. Victoria The good news is that Victoria is no holding you down is not my idea of care. longer sectioned and is not restrained This was not only barbaric but stupidly in her current placement – we are really counter productive. pleased about this as it has improved We want Victoria to live closer to home her behaviour. Well done to the current but only when she can be given the placement! right support to meet all her needs, Even though things have improved, her including staff who know BSL and can health is at a critical point. Victoria is over provide educational activities for her. five stone heavier than she was, mostly The residential college is currently due the over-reliance on drugs that have rehabilitating her so she can achieve caused her to gain weight, which has this. It would be nice to see her closer to aggravated her joint problems. home, so we can do the things we love doing together as a family. I think that the NHS has a lot to answer “ t would be nice to see I for – the over-use of restraint and too much reliance on drugs. I am not trying her closer to home, so to say these never have a place but we can do the things they certainly have been abused. There we love doing together is a great deal of difference between common-sense humanitarian restraint as a family” and the type of unnecessary violence used to hold down a deaf, terrified autistic person. Having five people42 | Out of sight

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