SlideShare a Scribd company logo
1 of 52
Download to read offline
Out of sight
Stopping the neglect and abuse of people with a learning disability
2|   Out of sight
This report is dedicated to the late Professor Jim Mansell CBE,
who was a powerful champion for people with a learning
disability whose behaviour is described as challenging.
He dedicated his working life to improving the support and
services they and their families receive, to drive up standards
and to ensure better lives and opportunities. His work and
influence 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   Out of sight
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
The care system is failing people with
a learning disability and behaviour
that challenges.

This report by Mencap and the
Challenging Behaviour Foundation
says enough is enough.

The way we support people with a
learning disability and behaviour that
challenges must change.
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 safe
each player in the health and social        arrangements do not work against the          from abuse and ensure that rigorous action
care system is expected to do within an     incentive to get people out of assessment     is taken against abusers and responsible
agreed 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 continued
action plan.                                development of larger units.
                                                                                          Commissioners must make sure
                                                                                          
                                                                                          that providers of care and support
The government must start a closure
                                          The government must ensure that the
                                                                                        demonstrate that they are capable of
programme of all large assessment and       Care Quality Commission (CQC) has the         meeting the needs of people who show
treatment units to be completed in three    power to only register services that are in   behaviour that challenges and that they
years and ensure that smaller, local        line with the policy recommendations in       can provide the right environment and
assessment 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 a
to develop local services that meet the     learning disability and their families,
needs of children and adults with a         and not shy away from taking
learning disability and behaviour that      action to deregister or enforce their
challenges, including community-based       recommendations.
intensive support services. There must be
no excuse for sending vulnerable people
far away.


                                                                                                                     Out of sight   7
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 mum



8|   Out of sight
These terrible events could not have been a
Cornwall, 2006                                                                               surprise to the Department of Health, which
                                              Sutton and Merton, 2007
                                                                                             had been warned in two reports by Professor
Care homes scandal: Abused.                   Catalogue of abuse in NHS                      Jim Mansell² of the serious consequences for
Bullied. Confined. Drugged.                   care homes                                     people who show behaviour that challengesÂł
The 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 England
says steps are being taken to ensure it        and will inspect 200 of them.’                 “ watched this shocking programme,
                                                                                               I
does not happen again: “The abuse that’s                                                       through my hands in some parts, and
been uncovered of people with learning                                                         switched off in tears when it got to the
disabilities is an absolute disgrace. It is                                                    most disturbing part – a vulnerable young
completely unacceptable. The Trust has                                                         woman left shivering outside on the
already taken steps to put things right in                                                     ground after being repeatedly doused
Cornwall, 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 run
happen again to other vulnerable people.”’                                                     hospital like the one investigated last
                                                                                               night.” Chrissy’s mum




                                                                                                                            Out of sight   |9
This report tells the stories of James, Chrissy,   These stories confirm the need for real and
Joe, Emmanuel and Victoria. Each section           lasting change. We must stop allowing people
tells a part of their stories through the words    to be so far out of sight that what happened
of their families. You will hear about their       at Winterbourne goes on happening to others
experiences of not getting the right care          again and again.
locally, how they ended up in assessment
and treatment units, what happened to them
there and where they are now.

Through their stories, this report shows how
providers, commissioners, regulators and
the Department of Health have failed to
act on the substantial amount of available
guidance. It shows how they have allowed
the care system to fail its most vulnerable
people by not developing good quality local
services for people with a learning disability
and behaviour that challenges.

Mencap and the Challenging Behaviour
Foundation (CBF) hope that this report
inspires everyone involved in the care and
support of people with a learning disability
and behaviour that challenges to help
demand action that will stop people being
sent away.




10   Out of sight
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
The role of the CQC and others                                                                    The scale of the problem

The CQC, charged with ensuring that these         compliance’ and ‘failing to meet essential      It would be wrong to believe that what
facilities are up to standard, has been           standards’, which betray the seriousness of     happened to Simon and all the other people
strongly criticised for failing to act on the     what this could mean. Hidden behind these       who lived at Winterbourne View was isolated
information it had been given. There was          words are stories of abuse, neglect and         or confined to one provider, or even one
also great concern when it emerged that the       appalling care – of loved family members        type of provider. In the months that have
CQC had inspected Winterbourne View prior         whose lives have been irrevocably damaged.      followed these appalling revelations of
to the Panorama programme and concluded                                                           abuse, the CQC has investigated all similar
                                                  But simply to blame the CQC for not
that 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 found
When 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 be
featured in this report resided, we were very     delivering appropriate local support and         50% of the services were not only failing
concerned to see that, like at Winterbourne       services. They have a key role to play, both       to meet standards around care and
View, most of these units had been found to       in developing a positive culture, where staff      welfare, but also failing to meet standards
be 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 where
While the 150 CQC inspections conducted           abuse and poor practice are allowed to           o
                                                                                                    nly 14% of people residing in the 72
after the events at Winterbourne appear to        become embedded. Responsibility extends          inspected units were in places that fully
have been much more rigorous than previous        beyond the role of the CQC.                      complied with the standards inspected.
inspections, building confidence in the CQC
and its ability to detect and act robustly on                                                     The CQC inspections confirm that poor
abuse, neglect and poor practice will take                                                        practice and putting people at risk of abuse
a long time. This is not helped by the bland                                                      is widespread.
words used in its reports, such as ‘non-




12 | Out of sight
The government review

Chillingly, Terry’s account reveals that when    There can be no question that there are          the headlines? The fact is that well-meaning
he 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 at
the secret cameras revealed. While some                                                           its disposal to achieve the fundamental
                                                 It is over one year since the events at
levels of abuse and neglect can be easier to                                                      changes that are needed. Otherwise, the
                                                 Winterbourne were exposed and a series
identify and prevent, others are more hidden.                                                     sort of abuse seen at Winterbourne View,
                                                 of investigations and reviews has been           Cornwall, and Sutton and Merton will
This 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 the
and provision of care and support of people      government has released its interim report,      The ultimate test of the government’s final
with a learning disability and behaviour that    which sets out the actions it believes are       recommendations is whether it will take
challenges. There are three crucial questions    needed to address failures across all parts      the necessary steps to improve the lives
to 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 institutional
2.  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 gathering
Clearly no one can be complacent – no one
                                                 dust before the next scandal of abuse hits
can afford to say “it never happens here”.


                                                                                                                                Out of sight | 13
Real people, real lives                    Who are they?
In this report, families whose loved       People who show behaviour
ones have experienced poor care,           that challenges
neglect and abuse in all parts of the
system tell their stories. They are just   Each person in this report has the same           person’s or other people’s quality of life, those
a few of the many that could be told.      needs and feelings as anyone else. They           who care and support them may find it very
They 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 learning
who 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 the


14 | Out of sight
People who may need
assessment and support
Individuals 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 the
intervention. At these times, what is needed     a section of the Mental Health Act 1983           private healthcare sector, are simply being
is a good assessment of the cause of the         (MHA). This is sometimes referred to as ‘being    used as dumping grounds by commissioners
problem, followed by a treatment plan to         sectioned’ or ‘sectioning’. While this may        looking for an easy ‘solution’ at any cost. As a
address those issues and access to good          sometimes be necessary, there are concerns        result, people can be sent many miles away
support 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 local
person to an assessment and treatment            services have broken down and there is no         None of the people in this report (or the
unit. When it is necessary (for instance, when   other alternative.                                hundreds of others like them) should have
someone may have a complex mental health                                                           been sent to places where they were out of
condition), it should be to a small unit that    Too many people are being sent away to            the reach of their families and where they
is 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, these
to their local community as soon as possible.    units do not actually provide the quality
                                                 of specialist assessment and treatment
A very small number of people with a learning    services that is needed. Often, people with
disability need secure forensic services, such   a learning disability end up in these places
as those who have committed a serious            unnecessarily, because the right option for
offence like arson or sexual assault. Mencap     them is not available locally or because
and CBF’s background policy paper7 explains      local services do not possess the skills to
this in more detail.                             understand the cause of their behaviour.


                                                                                                                                   Out of sight | 15
People at risk of abuse                                                                             People in this report
People with a learning disability are known to     The people in this report, like so many others   The first section of the report introduces
be at greater risk of abuse than the general       who show behaviour that challenges, did          James, Chrissy, Joe, Emmanuel and Victoria
population. Despite the fact that those who        not have their basic health and social care      – each a member of a loving family and each
show 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 and
there has been surprisingly little research        seclusion, and were physically harmed by
into 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 physical
that 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 Emerson




16 | Out of sight
James
James 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 body
not 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 and
where he has been seriously abused by
                                               behaviour has grown worse over the years
other residents.
                                               because of everything he has been through.
When our much-loved son James was a little     He now finds a lot of situations challenging
boy, he struggled to understand the world      and his behaviour will reflect this. As a result
around him and was unable to communicate       of poor care and abuse, his destructive
with others. But all who knew him liked him,   behaviours have become more extreme, and
and some even came to love him. When a         now he will also strike out at people he finds
support worker at his school was about to      threatening. When things are really bad, he
move to a new job, she said to him: “James,    self-injures. Much of his behaviour can be
I love you.” James, who normally never         prevented if people support him well.
speaks, replied: “I love you.”

As a child, he was extremely hyperactive
and managed to survive on just a few hours’
sleep each night. The slightest thing could
make him very angry. He expressed this in
destructive behaviour, but he never once
sought to hurt another person. He really
enjoyed physical activity and music, and had
a delightful sense of humour. Since James




                                                                                    Out of sight | 17
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
Joe
Joe had been successfully living with a          he has said. They must not try to pass it off
friend in supported living, but he became        with saying: “Ok Joe, yes mate,” if they don’t
unsettled when the manager and other             understand what he is trying to say, as Joe
familiar 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. After
an incident, he was detained under the
Mental Health Act and sent to a unit
130 miles away from home.

Our son Joe is 36 years old. He’s a boisterous
person, with a wicked sense of humour. He
loves being out and about, and he has a big
family who love him to bits.

Being at the unit means he hardly gets
to see his three nephews, as they are too
young to visit. He misses them and talks
about them constantly.

Joe has a severe learning disability and
behaviour that challenges. He doesn’t use
many words.

When communicating with Joe, staff need
to listen to him and repeat back to him what



                                                                                     Out of sight | 19
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 support




20 | Out of sight
Victoria
Victoria has spent a large part of her adult    If she doesn’t know what is going on, she
life 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 her
neglected or not understood and in the last     anxious. If her sister comes in dancing and
but one unit she suffered abusive restraint.    giggling, she will respond well and dance
She is now in a residential college where       and giggle too.
she is being rehabilitated and her family
                                                Victoria is sociable, likes cups of tea and
hope that eventually she might be moved
                                                going out for meals. She can be affectionate
to a well run place closer to home.
                                                and funny and can form strong bonds with
My daughter Victoria is 41 with a moderate      people. Some staff have been brilliant with
learning disability, autistic tendencies and    her. She is a good judge of character – her
what is sometimes termed challenging            approval is a good recommendation. We
behaviour. A double whammy for Victoria         communicate by signing and talking at
is that she is also deaf. She picked up basic   the same time. We also write for her. She
Makaton sign language in ten hours in junior    loves the Muppets and it is a ritual when
school and when she was in a unit with deaf     she comes home, to chill in the evening and
people using level two British Sign Language    watch a Muppet Show.
(BSL), she understood that too. You would be
surprised to know how frequently the staff
who have worked with her have no signing
skills at all. There is no excuse for this.

We can normally work out why Victoria is
cross and displaying challenging behaviour.




                                                                                     Out of sight | 21
Why are people sent
to assessment and                                              James

treatment units and
other 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 take

settings 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 to
The path that took James, Chrissy,                 Eventually, a residential care home was       manage James’s behaviour. It was a
Joe, Emmanuel and Victoria so                      found, but it was some way from his           vicious circle, where the lack of good
far from home is a complicated                     family home. Before long, we found him        support made him more anxious, which
one, 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 ‘calmed
Not getting the right                              heating in the home and the residents         down’. We know how very frightened he

support locally                                    were not being properly fed.                  would have been by this.


The guidance shows how to successfully             James was moved to another care
support individuals with complex needs10, but      home that was also far away, and still
all too often it is not being put into practice.   there was no proper assessment of his
                                                   needs. The home claimed expertise in
James’s, Emmanuel’s and Victoria’s families        supporting people with autism, but we
explain what can happen when assessment            saw little evidence of this. James was
and support is not available locally.              neglected, and his health issues, such



22 | Out of sight
Emmanuel

After 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 eating
assessment had been done and the                three meals a day. On one occasion, he
home just didn’t match his needs. Even          physically turned the table up. That was
though 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 day
they thought it was too expensive – they
                                                in bed and most of the night awake.
wanted a cheaper option.
                                                The placement was breaking down for
It became clear after two or three months       the staff and for him. His behaviour was
that the care home wasn’t working.              getting worse, and he was repeatedly
The staff weren’t used to someone with          inflicting injuries on himself. I asked them
Emmanuel’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 in
they didn’t listen.                             to assess him. A psychologist did come
                                                round, but because Emmanuel was in bed,
Emmanuel doesn’t like big rooms with
lots 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 do
he was spending all of his time. The TV         a proper assessment of his sensory needs,       agency staff who came
was on all day, and the noise was just          but none of this took place.                    in just didn’t know how
too much for him. It was also a ‘house
rule’ that everyone had to eat together                                                         to engage with him”


                                                                                                                  Out of sight | 23
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
James


When 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 periods
him have seen the way his behaviour has     who was bullying him – this request was         when the management and staff were
deteriorated. Failed placements, the lack   dismissed. Things came to a head when           good, for the majority of the time there
of 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 behaviour
him increasingly angry and frustrated. He   had a breakdown and was admitted to an
                                                                                            from staff and neglect that amounted
has developed a number of challenging       assessment and treatment unit.
                                                                                            to abuse. He was also given medication
behaviours, and he has been labelled
                                                                                            that was not needed. After our local
aggressive and violent.                     On top of the trauma he had endured in
                                                                                            authority failed to make good on their
                                            previous placements, they found that he had
James had an awful experience at                                                            promise of commissioning a local service,
                                            an untreated urinary tract infection. This
the 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. By
worse. 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 he
show behaviour that challenges was                                                          we felt there was no choice but to have
                                            had received proper assessment and support
very 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 and
develop new challenging behaviours.         sent to another residential care home where




                                                                                                                          Out of sight | 25
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 important




26 | Out of sight
Victoria
                                                                                          Other families will recognise this as what has
                                                                                          become an all too familiar story: when local
                                                                                          services fail to offer the right support, their
As Victoria got older, she experienced      about the age of 16, at the respite place     loved one is sent to one unsuitable place
other 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 started
signing unit closer to home but the offer   ripping her clothes. There was quite a
was withdrawn. So it was decided she        violent fellow client there – I don’t think
would be sent to another unit instead.      he hurt her but he could have outbursts
Her favourite staff at the place where      that had an effect on Victoria.               “ n the various places she
                                                                                           I
she was were told to trick her in order                                                    has lived, her aggression
to get her there. They told her that she
was going on holiday. She was taken on                                                     has been learned; I hope
a nine-hour journey and left with people                                                   it can be unlearned”
who had no signing skills and who had
never met her before. This has not helped
her sense of security. Imagine how she
must have felt.

So many sad things have happened to
Victoria. In the various places she has
lived, her aggression has been learned; I
hope it can be unlearned. When she was
at the junior school, the headmistress
remarked on how gentle she was. After




                                                                                                                         Out of sight | 27
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
Emmanuel
Some families describe the detention of their
family member under the Mental Health Act
as a sudden and unexpected event. Others
                                                 Three months after I had voiced my            The emotional cost of this experience
suggest 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 also
and that admission solved a problem for
                                                 moved to an assessment and treatment          been excessive. I still cannot believe how
the 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 been
Mental Health Act when they meet the             admitted to the unit. I had visited him the
specific criteria for detention, and families    day before at the care home, and no one
should always be informed of their rights        had told me this was planned. They had
once the person is detained.                     already decided it would happen following
                                                 an incident about four days prior when
But families report they are often uninformed,   Emmanuel had been physically aggressive
and 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
At the assessment
                                                            James                                      Chrissy
and treatment unit
The stories all show how desperate their
families were to get them the right help.        When he arrived there, James was in       Chrissy went to an assessment and
Though faced with the prospect of their son      a very bad state. He was very troubled,   treatment unit because she wasn’t
or daughter being sent to a unit, often many     withdrawn and had been refusing to        getting the right medication and
miles 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 service
Surely a thorough assessment was exactly                                                   where the staff knew what they were
what was needed? With a treatment plan                                                     doing, then I would feel happy that she
that would enable much-needed behaviour                                                    was safe, but this has not happened yet.
support to be put into place. Maybe this could
be the start of better times ahead? They were
right to expect this, and there are many units
that provide exactly that.

Certainly for James and Chrissy, their parents
initially welcomed them going into the unit.




30 | Out of sight
Getting assessment and
treatment 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 get
Assessment and treatment units report          her medication changed successfully.
that they can find themselves dealing          This seems to be happening, but
with issues, such as missed symptoms of        it took them a year to start doing
physical ill health, that really should have   anything. Initially, she did not get
been identified by community services. A       the careful monitoring that we’d
psychiatrist from one unit gave an example     hoped for. The way they found out
of someone being admitted with behaviour       it was better for her to stop taking a
that had become very challenging, but within   particular drug was because they had
hours 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 to
his old self.

It is even more concerning that some
families report that people are admitted                                                “ nitally, she did not get
                                                                                         I
to these settings but not actually assessed                                              the careful monitoring
or treated.
                                                                                         that we’d hoped for”




                                                                                                            Out of sight | 31
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
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 people
Joe was sectioned and sent away to        individual losing skills and becoming less    with a learning disability in 2012 found
an assessment and treatment unit          independent than they were before.            that many of the services were not
130 miles from where we live. It’s a                                                    meeting essential standards around care
five-hour round trip. We agreed to                                                      and welfare:
drive him there after he had been
sectioned. It was heartbreaking                                                         ‘When speaking to staff about two care
having to leave him there. We visit                                                     plans, they agreed that they were not
Joe every other weekend, but in the                                                     actually accurate.’13
winter we can’t visit because the unit
is in a very isolated area and there is                                                 ‘We found that staff were very controlling
too much snow.                                                                          in their attitude. Examples of this
                                                                                        approach included adherence to ‘house
It breaks our heart when we’ve            ‘ he risks associated
                                           T                                            rules’ that were routinely given as
spoken to him on the phone.
Sometimes he’s been upset and
                                           with congregate,                             explanations about patient’s choices,
                                                                                        care and treatment, and restriction to
crying, but there was nothing we           institutionalised services                   food and drink.’14
could do. Joe doesn’t understand how       and poor-quality care
far 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
Joe
Inspections often fail to identify the poor
quality of care and abuse in assessment and
treatment 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 the
an inspection found the service was fully
                                                   unit. It is a real ‘institution’ with 26 beds.   same faces – people seem stuck there. We
compliant with all the essential standards of
                                                   There are set times for things, and everything   have been fighting to get Joe out since he
quality and safety: ‘People who use this service
                                                   revolves around set activities. This is the      got there two years ago. We never see any
were viewed as individuals, and their needs for
                                                   opposite of what Joe was used to. Previously,    other visitors, so we don’t know whether
privacy 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
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 clumsy
With regard to other indignities,
                                            not meeting essential standards around          and it’s nothing to worry about. But they
Victoria’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 found
it affected her behaviour because she        ‘ he patient went on to tell us that they
                                              T                                             that James’s service was compliant with the
started to throw her clothes on the           did not have a good relationship with         essential standard around safeguarding. This
floor whereas previously she would            some staff, “Some of the staff are nasty      would have been around the same time that
have 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.”’16
her shoe. We complained to the local
authority (LA) and were assured that         ‘ fourth patient told us, “Staff pretend
                                              A
the manager personally inspected her          to be polite when there are visitors.”’17
shoes every morning. Yes, they really did
say this. Good job we took a photograph,
not to mention we kept the actual shoe!
                                            “ n the unit they were
                                             I
This 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 staff
speak very aggressively to one of the       Worst of all, families may sometimes
other residents. We raised this, and from   start to see a deterioration in behaviour
then on we were not able to visit her       and experience the growing sense that
room and could only see her in a family     something is not right. Even though their son
visiting room.                              or daughter can’t tell them what is going on,
                                            they know that something is wrong. They


                                                                                                                          Out of sight | 35
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
Victoria


Secrecy, deceit and lies have occurred       aggressive to other clients – prior to this   they “only restrained her four or five
at some units. At one unit, Victoria lost    placement, this was not the case. They        times per week”. I wonder how many
her second front tooth. The first loss had   had deliberately covered up that another      times they were restraining her before if
been 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. Restraining
this, she had been noticeably careful not    the same section as this aggressive client.   deaf people takes away their ability to
to repeat the experience. We were told it    When Victoria was removed from danger         communicate, which is barbaric and
was 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 we
when 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, they
struck. That got us thinking and, on
                                             – they had not disclosed this. I found        were abusing their power – it was simply
phoning the unit to ask if anyone had
                                             out at a tribunal meeting a year after        barbaric. There was no proper strategy
been 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 risk
punched in the mouth by X”. When
                                             very sympathetic to this unit and asked       assessment that took her health issues
we enquired higher up, the director of
                                             how her mother managed to take her            into account. They do not use restraint at
nursing was duly outraged. “Who told
                                             out on her own and her family did not         the college where she is now. This proves
you?” he blustered indignantly.
                                             need to restrain Victoria while at home.      that the need for restraint for Victoria is
Significantly, their own records had         In July 2010, Victoria was given notice       nonsense. She should never have had to
indicated that Victoria had become           to leave and we were informed that now        go through this.




                                                                                                                          Out of sight | 37
How do they get out?

Problems surrounding the discharge and           The CQC’s recent inspection programme          between health and social services, and
transfer to an appropriate support service       found that one person had been living in an    while the battles go on, the impact on the
near 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 inspection
be time-limited and should include an            report from 2011, the inspector seemed         In the stories below, it is also incredible
appropriate assessment, a treatment plan         to think that remaining at the unit was a      that parents and families are often
and timely discharge. Many units report that     positive thing:                                expected to find alternative provision for
they start to plan the discharge of the person                                                  their son or daughter. This is a failure by
                                                  ‘ he manager and deputy manager
                                                   T
as soon as they are admitted. However, the                                                      the NHS and social services to carry out their
                                                   were able to tell us about many positive
evidence suggests that people are spending                                                      legal responsibilities.
                                                   experiences of patients since being here
far 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 and
The CQC Count Me In 2010 census looked           show how hard it is to get discharged and
at providers of inpatient learning disability    negotiate an appropriate package of support
services. It found that 67% of all patients in   closer to home. The funding arrangements
England and Wales had been in hospital for       that are currently in place in many areas
one year or more, 53% for two years or more      can work against the incentive to get people
and 31% for more than five years.                out. Funding disputes seem to be common



38 | Out of sight
James                                                                                  Chrissy


James remained in the specialist learning    package. However, the fact is that he    Chrissy is still in the unit after two
disability 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 local
Following the safeguarding investigation,    five years.                              provision that could meet her needs.
the unit has been adapted so that
there is now a single-person service for                                              Her medication changes should
James within it. In an improved physical                                              be completed soon, so we need to
environment and with staff support                                                    start planning her future placement,
tailored to his needs, James’s challenging                                            especially as we know it could take
behaviour has greatly reduced and things                                              about a year to find somewhere
have slowly improved.                                                                 suitable. The commissioners were
                                                                                      refusing to start planning because of
But James should never have been placed                                               a dispute over which area will fund
in the unit to begin with – it would not                                              Chrissy’s package of care when she
have been necessary had he not been                                                   leaves. They are still not starting to
left 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 to
he was ready to leave. But since then,                                                involve a solicitor because of problems
four years went by while the authorities                                              getting the right care for Chrissy.
argued over the funding package needed
to bring James back to where he belongs.
Finally they have agreed and we have
found a house for James where he can
live independently with a 24-hour care



                                                                                                                  Out of sight | 39
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 in




40 | Out of sight
Joe


Joe has been in the assessment and              decorating the property, and now it’s all
treatment 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 training
confirmed that the PCT would fully secure       and getting to know him. The date for
his package of care when he leaves.             him to move in has been agreed after lots
Because of this, the local authority            of pressure from us, so hopefully he will
has 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, as
had to find a provider we are happy with
                                                we just haven’t been able to get Joe
and contact housing providers to find a
                                                home. At times, we thought we would
suitable house for Joe.
                                                never get to where we are now. I’m
At the advice of the psychologist at the        worried about how he is going to cope           “ t was left to us to sort all
                                                                                                 I
unit, Joe is moving into a single-person        with living alone with just two members
service. We were concerned about this at        of staff, having been in an institutional
                                                                                                 this out. Had we not been
first, as we don’t want Joe to be isolated,     setting for two years. I think he’s going        doing it ourselves, nothing
but 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 will
ourselves, nothing would have happened.         have to adjust to ordinary living because
                                                he was left in an environment he should
It 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
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 people



42 | Out of sight
Questions raised by
these stories
                      Why are local services unable to support
                                                                     ow can someone end up in an
                                                                         H
                      the people in this report so they can              assessment and treatment unit
                      live near their families in their local            when all they needed was a change
                      communities?                                       in their medication or to be treated
                                                                         for a urine infection?

                       hy aren’t proper assessments carried
                          W
                          out and behaviour support plans put          ow did the CQC and adult safeguarding
                                                                         H
                          in place?                                      teams miss these clear examples of
                                                                         neglect and abuse?

                       hy do some staff working in these units
                          W
                          accept neglect and abuse as the norm?        hy are decisions around funding and
                                                                          W
                                                                          placement allowed to take so long?

                      W
                       hy are people put in places where
                      staff don’t have the necessary skills or         ow can those responsible – the
                                                                          H
                      training to communicate with them?                  government, regulators, commissioners
                                                                          and providers of the services – allow
                                                                          these things to go on?
                       hy have the families of the people
                          W
                          in this report been left to find suitable
                          support for their sons and daughters
                          themselves without help from the very
                          services being paid to support them?




                                                                                                   Out of sight | 43
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour
The care system is failing people with learning disabilities and challenging behaviour

More Related Content

Similar to The care system is failing people with learning disabilities and challenging behaviour

Community resilience carol mayston
Community resilience carol maystonCommunity resilience carol mayston
Community resilience carol maystonECC_flood
 
The 7 Best Essay Writing Services In USA. Websites
The 7 Best Essay Writing Services In USA. WebsitesThe 7 Best Essay Writing Services In USA. Websites
The 7 Best Essay Writing Services In USA. WebsitesStacy Vasquez
 
Careif compassion and care series 1
Careif compassion and care series 1Careif compassion and care series 1
Careif compassion and care series 1MrBiswas
 
Let's get rid of Ageism
Let's get rid of AgeismLet's get rid of Ageism
Let's get rid of AgeismAlison Clyde
 
Citizen Directed Support
Citizen Directed SupportCitizen Directed Support
Citizen Directed SupportCitizen Network
 
Spring Newsletter
Spring NewsletterSpring Newsletter
Spring NewsletterLesley McDade
 
Crisis Communications in a 140 Character World
Crisis Communications in a 140 Character WorldCrisis Communications in a 140 Character World
Crisis Communications in a 140 Character WorldAndrea Obston
 
Coproduction in social services
Coproduction in social servicesCoproduction in social services
Coproduction in social serviceswalescva
 
Surrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment StorySurrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment StorySurrey CIA
 
The Help Movie Essay. The Main Issues Represen
The Help Movie Essay. The Main Issues RepresenThe Help Movie Essay. The Main Issues Represen
The Help Movie Essay. The Main Issues RepresenShannon Green
 
Disaster management
Disaster managementDisaster management
Disaster managementAmalkrishnakl
 
Surrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment StorySurrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment StorySurrey CIA
 
The covid-19 Implications On All of Us
The covid-19 Implications On All of UsThe covid-19 Implications On All of Us
The covid-19 Implications On All of Usmarketxceldata
 
Don't Turn Your Back on Bullying
Don't Turn Your Back on BullyingDon't Turn Your Back on Bullying
Don't Turn Your Back on BullyingLachlan Williams
 
Good Introduction Paragraph For A Res. Online assignment writing service.
Good Introduction Paragraph For A Res. Online assignment writing service.Good Introduction Paragraph For A Res. Online assignment writing service.
Good Introduction Paragraph For A Res. Online assignment writing service.Sandy Simonsen
 
Making Connections- Report on Rooming House project-final
Making Connections- Report on Rooming House project-finalMaking Connections- Report on Rooming House project-final
Making Connections- Report on Rooming House project-finalJanet Reid
 
AitT3_02 Hazel and Jonathan
AitT3_02 Hazel and JonathanAitT3_02 Hazel and Jonathan
AitT3_02 Hazel and JonathanNoreen Blanluet
 

Similar to The care system is failing people with learning disabilities and challenging behaviour (19)

Community resilience carol mayston
Community resilience carol maystonCommunity resilience carol mayston
Community resilience carol mayston
 
The 7 Best Essay Writing Services In USA. Websites
The 7 Best Essay Writing Services In USA. WebsitesThe 7 Best Essay Writing Services In USA. Websites
The 7 Best Essay Writing Services In USA. Websites
 
Careif compassion and care series 1
Careif compassion and care series 1Careif compassion and care series 1
Careif compassion and care series 1
 
Let's get rid of Ageism
Let's get rid of AgeismLet's get rid of Ageism
Let's get rid of Ageism
 
Citizen Directed Support
Citizen Directed SupportCitizen Directed Support
Citizen Directed Support
 
Spring Newsletter
Spring NewsletterSpring Newsletter
Spring Newsletter
 
Crisis Communications in a 140 Character World
Crisis Communications in a 140 Character WorldCrisis Communications in a 140 Character World
Crisis Communications in a 140 Character World
 
2902210_Accessible
2902210_Accessible2902210_Accessible
2902210_Accessible
 
Coproduction in social services
Coproduction in social servicesCoproduction in social services
Coproduction in social services
 
Surrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment StorySurrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment Story
 
The Help Movie Essay. The Main Issues Represen
The Help Movie Essay. The Main Issues RepresenThe Help Movie Essay. The Main Issues Represen
The Help Movie Essay. The Main Issues Represen
 
Disaster management
Disaster managementDisaster management
Disaster management
 
Surrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment StorySurrey Covid 19 Community Impact Assessment Story
Surrey Covid 19 Community Impact Assessment Story
 
The covid-19 Implications On All of Us
The covid-19 Implications On All of UsThe covid-19 Implications On All of Us
The covid-19 Implications On All of Us
 
Don't Turn Your Back on Bullying
Don't Turn Your Back on BullyingDon't Turn Your Back on Bullying
Don't Turn Your Back on Bullying
 
Good Introduction Paragraph For A Res. Online assignment writing service.
Good Introduction Paragraph For A Res. Online assignment writing service.Good Introduction Paragraph For A Res. Online assignment writing service.
Good Introduction Paragraph For A Res. Online assignment writing service.
 
Making Connections- Report on Rooming House project-final
Making Connections- Report on Rooming House project-finalMaking Connections- Report on Rooming House project-final
Making Connections- Report on Rooming House project-final
 
BATUK MEDIA DAY
BATUK MEDIA DAYBATUK MEDIA DAY
BATUK MEDIA DAY
 
AitT3_02 Hazel and Jonathan
AitT3_02 Hazel and JonathanAitT3_02 Hazel and Jonathan
AitT3_02 Hazel and Jonathan
 

More from MithranSamuel

Older people & alcohol
Older people & alcoholOlder people & alcohol
Older people & alcoholMithranSamuel
 
Social work at the end of life
Social work at the end of lifeSocial work at the end of life
Social work at the end of lifeMithranSamuel
 
Pssru facs report
Pssru facs reportPssru facs report
Pssru facs reportMithranSamuel
 

More from MithranSamuel (9)

Is fpostcard
Is fpostcardIs fpostcard
Is fpostcard
 
Older people & alcohol
Older people & alcoholOlder people & alcohol
Older people & alcohol
 
Social work at the end of life
Social work at the end of lifeSocial work at the end of life
Social work at the end of life
 
Pssru facs report
Pssru facs reportPssru facs report
Pssru facs report
 
Facs report
Facs reportFacs report
Facs report
 
Facs report
Facs reportFacs report
Facs report
 
Facs report
Facs reportFacs report
Facs report
 
Facs report
Facs reportFacs report
Facs report
 
Facs report
Facs reportFacs report
Facs report
 

Recently uploaded

Call Girls In Andheri East Call 9920874524 Book Hot And Sexy Girls
Call Girls In Andheri East Call 9920874524 Book Hot And Sexy GirlsCall Girls In Andheri East Call 9920874524 Book Hot And Sexy Girls
Call Girls In Andheri East Call 9920874524 Book Hot And Sexy Girlsnehamumbai
 
See the 2,456 pharmacies on the National E-Pharmacy Platform
See the 2,456 pharmacies on the National E-Pharmacy PlatformSee the 2,456 pharmacies on the National E-Pharmacy Platform
See the 2,456 pharmacies on the National E-Pharmacy PlatformKweku Zurek
 
Low Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service Mumbai
Low Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service MumbaiLow Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service Mumbai
Low Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service Mumbaisonalikaur4
 
Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...narwatsonia7
 
Call Girls Whitefield Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Whitefield Just Call 7001305949 Top Class Call Girl Service AvailableCall Girls Whitefield Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Whitefield Just Call 7001305949 Top Class Call Girl Service Availablenarwatsonia7
 
Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...
Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...
Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...narwatsonia7
 
High Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service Jaipur
High Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service JaipurHigh Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service Jaipur
High Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service Jaipurparulsinha
 
Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...
Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...
Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...Miss joya
 
Call Girl Bangalore Nandini 7001305949 Independent Escort Service Bangalore
Call Girl Bangalore Nandini 7001305949 Independent Escort Service BangaloreCall Girl Bangalore Nandini 7001305949 Independent Escort Service Bangalore
Call Girl Bangalore Nandini 7001305949 Independent Escort Service Bangalorenarwatsonia7
 
Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...narwatsonia7
 
Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...
Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...
Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...rajnisinghkjn
 
Call Girls ITPL Just Call 7001305949 Top Class Call Girl Service Available
Call Girls ITPL Just Call 7001305949 Top Class Call Girl Service AvailableCall Girls ITPL Just Call 7001305949 Top Class Call Girl Service Available
Call Girls ITPL Just Call 7001305949 Top Class Call Girl Service Availablenarwatsonia7
 
Call Girls Service Noida Maya 9711199012 Independent Escort Service Noida
Call Girls Service Noida Maya 9711199012 Independent Escort Service NoidaCall Girls Service Noida Maya 9711199012 Independent Escort Service Noida
Call Girls Service Noida Maya 9711199012 Independent Escort Service NoidaPooja Gupta
 
Call Girl Lucknow Mallika 7001305949 Independent Escort Service Lucknow
Call Girl Lucknow Mallika 7001305949 Independent Escort Service LucknowCall Girl Lucknow Mallika 7001305949 Independent Escort Service Lucknow
Call Girl Lucknow Mallika 7001305949 Independent Escort Service Lucknownarwatsonia7
 
Call Girls Service Chennai Jiya 7001305949 Independent Escort Service Chennai
Call Girls Service Chennai Jiya 7001305949 Independent Escort Service ChennaiCall Girls Service Chennai Jiya 7001305949 Independent Escort Service Chennai
Call Girls Service Chennai Jiya 7001305949 Independent Escort Service ChennaiNehru place Escorts
 
Call Girls Hebbal Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Hebbal Just Call 7001305949 Top Class Call Girl Service AvailableCall Girls Hebbal Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Hebbal Just Call 7001305949 Top Class Call Girl Service Availablenarwatsonia7
 
Ahmedabad Call Girls CG Road 🔝9907093804 Short 1500 💋 Night 6000
Ahmedabad Call Girls CG Road 🔝9907093804  Short 1500  💋 Night 6000Ahmedabad Call Girls CG Road 🔝9907093804  Short 1500  💋 Night 6000
Ahmedabad Call Girls CG Road 🔝9907093804 Short 1500 💋 Night 6000aliya bhat
 
VIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service Lucknow
VIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service LucknowVIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service Lucknow
VIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service Lucknownarwatsonia7
 
Glomerular Filtration rate and its determinants.pptx
Glomerular Filtration rate and its determinants.pptxGlomerular Filtration rate and its determinants.pptx
Glomerular Filtration rate and its determinants.pptxDr.Nusrat Tariq
 

Recently uploaded (20)

Call Girls In Andheri East Call 9920874524 Book Hot And Sexy Girls
Call Girls In Andheri East Call 9920874524 Book Hot And Sexy GirlsCall Girls In Andheri East Call 9920874524 Book Hot And Sexy Girls
Call Girls In Andheri East Call 9920874524 Book Hot And Sexy Girls
 
See the 2,456 pharmacies on the National E-Pharmacy Platform
See the 2,456 pharmacies on the National E-Pharmacy PlatformSee the 2,456 pharmacies on the National E-Pharmacy Platform
See the 2,456 pharmacies on the National E-Pharmacy Platform
 
Low Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service Mumbai
Low Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service MumbaiLow Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service Mumbai
Low Rate Call Girls Mumbai Suman 9910780858 Independent Escort Service Mumbai
 
Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Kanakapura Road Just Call 7001305949 Top Class Call Girl Service A...
 
Call Girls Whitefield Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Whitefield Just Call 7001305949 Top Class Call Girl Service AvailableCall Girls Whitefield Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Whitefield Just Call 7001305949 Top Class Call Girl Service Available
 
sauth delhi call girls in Bhajanpura 🔝 9953056974 🔝 escort Service
sauth delhi call girls in Bhajanpura 🔝 9953056974 🔝 escort Servicesauth delhi call girls in Bhajanpura 🔝 9953056974 🔝 escort Service
sauth delhi call girls in Bhajanpura 🔝 9953056974 🔝 escort Service
 
Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...
Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...
Call Girls Service in Bommanahalli - 7001305949 with real photos and phone nu...
 
High Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service Jaipur
High Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service JaipurHigh Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service Jaipur
High Profile Call Girls Jaipur Vani 8445551418 Independent Escort Service Jaipur
 
Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...
Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...
Russian Call Girls in Pune Riya 9907093804 Short 1500 Night 6000 Best call gi...
 
Call Girl Bangalore Nandini 7001305949 Independent Escort Service Bangalore
Call Girl Bangalore Nandini 7001305949 Independent Escort Service BangaloreCall Girl Bangalore Nandini 7001305949 Independent Escort Service Bangalore
Call Girl Bangalore Nandini 7001305949 Independent Escort Service Bangalore
 
Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...
Call Girls Electronic City Just Call 7001305949 Top Class Call Girl Service A...
 
Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...
Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...
Dwarka Sector 6 Call Girls ( 9873940964 ) Book Hot And Sexy Girls In A Few Cl...
 
Call Girls ITPL Just Call 7001305949 Top Class Call Girl Service Available
Call Girls ITPL Just Call 7001305949 Top Class Call Girl Service AvailableCall Girls ITPL Just Call 7001305949 Top Class Call Girl Service Available
Call Girls ITPL Just Call 7001305949 Top Class Call Girl Service Available
 
Call Girls Service Noida Maya 9711199012 Independent Escort Service Noida
Call Girls Service Noida Maya 9711199012 Independent Escort Service NoidaCall Girls Service Noida Maya 9711199012 Independent Escort Service Noida
Call Girls Service Noida Maya 9711199012 Independent Escort Service Noida
 
Call Girl Lucknow Mallika 7001305949 Independent Escort Service Lucknow
Call Girl Lucknow Mallika 7001305949 Independent Escort Service LucknowCall Girl Lucknow Mallika 7001305949 Independent Escort Service Lucknow
Call Girl Lucknow Mallika 7001305949 Independent Escort Service Lucknow
 
Call Girls Service Chennai Jiya 7001305949 Independent Escort Service Chennai
Call Girls Service Chennai Jiya 7001305949 Independent Escort Service ChennaiCall Girls Service Chennai Jiya 7001305949 Independent Escort Service Chennai
Call Girls Service Chennai Jiya 7001305949 Independent Escort Service Chennai
 
Call Girls Hebbal Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Hebbal Just Call 7001305949 Top Class Call Girl Service AvailableCall Girls Hebbal Just Call 7001305949 Top Class Call Girl Service Available
Call Girls Hebbal Just Call 7001305949 Top Class Call Girl Service Available
 
Ahmedabad Call Girls CG Road 🔝9907093804 Short 1500 💋 Night 6000
Ahmedabad Call Girls CG Road 🔝9907093804  Short 1500  💋 Night 6000Ahmedabad Call Girls CG Road 🔝9907093804  Short 1500  💋 Night 6000
Ahmedabad Call Girls CG Road 🔝9907093804 Short 1500 💋 Night 6000
 
VIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service Lucknow
VIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service LucknowVIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service Lucknow
VIP Call Girls Lucknow Nandini 7001305949 Independent Escort Service Lucknow
 
Glomerular Filtration rate and its determinants.pptx
Glomerular Filtration rate and its determinants.pptxGlomerular Filtration rate and its determinants.pptx
Glomerular Filtration rate and its determinants.pptx
 

The care system is failing people with learning disabilities and challenging behaviour

  • 1. Out of sight Stopping the neglect and abuse of people with a learning disability
  • 2. 2| Out of sight
  • 3. This report is dedicated to the late Professor Jim Mansell CBE, who was a powerful champion for people with a learning disability whose behaviour is described as challenging. He dedicated his working life to improving the support and services they and their families receive, to drive up standards and to ensure better lives and opportunities. His work and influence 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 Out of sight
  • 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. The care system is failing people with a learning disability and behaviour that challenges. This report by Mencap and the Challenging Behaviour Foundation says enough is enough. The way we support people with a learning disability and behaviour that challenges must change.
  • 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 safe each player in the health and social arrangements do not work against the from abuse and ensure that rigorous action care system is expected to do within an incentive to get people out of assessment is taken against abusers and responsible agreed 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 continued action plan. development of larger units. Commissioners must make sure that providers of care and support The government must start a closure The government must ensure that the demonstrate that they are capable of programme of all large assessment and Care Quality Commission (CQC) has the meeting the needs of people who show treatment units to be completed in three power to only register services that are in behaviour that challenges and that they years and ensure that smaller, local line with the policy recommendations in can provide the right environment and assessment 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 a to develop local services that meet the learning disability and their families, needs of children and adults with a and not shy away from taking learning disability and behaviour that action to deregister or enforce their challenges, including community-based recommendations. intensive support services. There must be no excuse for sending vulnerable people far away. Out of sight 7
  • 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 mum 8| Out of sight
  • 9. These terrible events could not have been a Cornwall, 2006 surprise to the Department of Health, which Sutton and Merton, 2007 had been warned in two reports by Professor Care homes scandal: Abused. Catalogue of abuse in NHS Jim Mansell² of the serious consequences for Bullied. Confined. Drugged. care homes people who show behaviour that challengesÂł The 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 England says steps are being taken to ensure it and will inspect 200 of them.’ “ watched this shocking programme, I does not happen again: “The abuse that’s through my hands in some parts, and been uncovered of people with learning switched off in tears when it got to the disabilities is an absolute disgrace. It is most disturbing part – a vulnerable young completely unacceptable. The Trust has woman left shivering outside on the already taken steps to put things right in ground after being repeatedly doused Cornwall, 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 run happen again to other vulnerable people.”’ hospital like the one investigated last night.” Chrissy’s mum Out of sight |9
  • 10. This report tells the stories of James, Chrissy, These stories confirm the need for real and Joe, Emmanuel and Victoria. Each section lasting change. We must stop allowing people tells a part of their stories through the words to be so far out of sight that what happened of their families. You will hear about their at Winterbourne goes on happening to others experiences of not getting the right care again and again. locally, how they ended up in assessment and treatment units, what happened to them there and where they are now. Through their stories, this report shows how providers, commissioners, regulators and the Department of Health have failed to act on the substantial amount of available guidance. It shows how they have allowed the care system to fail its most vulnerable people by not developing good quality local services for people with a learning disability and behaviour that challenges. Mencap and the Challenging Behaviour Foundation (CBF) hope that this report inspires everyone involved in the care and support of people with a learning disability and behaviour that challenges to help demand action that will stop people being sent away. 10 Out of sight
  • 11. Winterbourne exposed Whistle-blower at centre of Terry Bryan was the member of staff who blew the whistle ‘barbaric’ care home abuse exposĂŠ 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. The role of the CQC and others The scale of the problem The CQC, charged with ensuring that these compliance’ and ‘failing to meet essential It would be wrong to believe that what facilities are up to standard, has been standards’, which betray the seriousness of happened to Simon and all the other people strongly criticised for failing to act on the what this could mean. Hidden behind these who lived at Winterbourne View was isolated information it had been given. There was words are stories of abuse, neglect and or confined to one provider, or even one also great concern when it emerged that the appalling care – of loved family members type of provider. In the months that have CQC had inspected Winterbourne View prior whose lives have been irrevocably damaged. followed these appalling revelations of to the Panorama programme and concluded abuse, the CQC has investigated all similar But simply to blame the CQC for not that 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 found When 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 be featured in this report resided, we were very delivering appropriate local support and 50% of the services were not only failing concerned to see that, like at Winterbourne services. They have a key role to play, both to meet standards around care and View, most of these units had been found to in developing a positive culture, where staff welfare, but also failing to meet standards be 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 where While the 150 CQC inspections conducted abuse and poor practice are allowed to o nly 14% of people residing in the 72 after the events at Winterbourne appear to become embedded. Responsibility extends inspected units were in places that fully have been much more rigorous than previous beyond the role of the CQC. complied with the standards inspected. inspections, building confidence in the CQC and its ability to detect and act robustly on The CQC inspections confirm that poor abuse, neglect and poor practice will take practice and putting people at risk of abuse a long time. This is not helped by the bland is widespread. words used in its reports, such as ‘non- 12 | Out of sight
  • 13. The government review Chillingly, Terry’s account reveals that when There can be no question that there are the headlines? The fact is that well-meaning he 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 at the secret cameras revealed. While some its disposal to achieve the fundamental It is over one year since the events at levels of abuse and neglect can be easier to changes that are needed. Otherwise, the Winterbourne were exposed and a series identify and prevent, others are more hidden. sort of abuse seen at Winterbourne View, of investigations and reviews has been Cornwall, and Sutton and Merton will This 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 the and provision of care and support of people government has released its interim report, The ultimate test of the government’s final with a learning disability and behaviour that which sets out the actions it believes are recommendations is whether it will take challenges. There are three crucial questions needed to address failures across all parts the necessary steps to improve the lives to 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 institutional 2. 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 gathering Clearly no one can be complacent – no one dust before the next scandal of abuse hits can afford to say “it never happens here”. Out of sight | 13
  • 14. Real people, real lives Who are they? In this report, families whose loved People who show behaviour ones have experienced poor care, that challenges neglect and abuse in all parts of the system tell their stories. They are just Each person in this report has the same person’s or other people’s quality of life, those a few of the many that could be told. needs and feelings as anyone else. They who care and support them may find it very They 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 learning who 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 the 14 | Out of sight
  • 15. People who may need assessment and support Individuals 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 the intervention. At these times, what is needed a section of the Mental Health Act 1983 private healthcare sector, are simply being is a good assessment of the cause of the (MHA). This is sometimes referred to as ‘being used as dumping grounds by commissioners problem, followed by a treatment plan to sectioned’ or ‘sectioning’. While this may looking for an easy ‘solution’ at any cost. As a address those issues and access to good sometimes be necessary, there are concerns result, people can be sent many miles away support 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 local person to an assessment and treatment services have broken down and there is no None of the people in this report (or the unit. When it is necessary (for instance, when other alternative. hundreds of others like them) should have someone may have a complex mental health been sent to places where they were out of condition), it should be to a small unit that Too many people are being sent away to the reach of their families and where they is 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, these to their local community as soon as possible. units do not actually provide the quality of specialist assessment and treatment A very small number of people with a learning services that is needed. Often, people with disability need secure forensic services, such a learning disability end up in these places as those who have committed a serious unnecessarily, because the right option for offence like arson or sexual assault. Mencap them is not available locally or because and CBF’s background policy paper7 explains local services do not possess the skills to this in more detail. understand the cause of their behaviour. Out of sight | 15
  • 16. People at risk of abuse People in this report People with a learning disability are known to The people in this report, like so many others The first section of the report introduces be at greater risk of abuse than the general who show behaviour that challenges, did James, Chrissy, Joe, Emmanuel and Victoria population. Despite the fact that those who not have their basic health and social care – each a member of a loving family and each show 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 and there has been surprisingly little research seclusion, and were physically harmed by into 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 physical that 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 Emerson 16 | Out of sight
  • 17. James James 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 body not 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 and where he has been seriously abused by behaviour has grown worse over the years other residents. because of everything he has been through. When our much-loved son James was a little He now finds a lot of situations challenging boy, he struggled to understand the world and his behaviour will reflect this. As a result around him and was unable to communicate of poor care and abuse, his destructive with others. But all who knew him liked him, behaviours have become more extreme, and and some even came to love him. When a now he will also strike out at people he finds support worker at his school was about to threatening. When things are really bad, he move to a new job, she said to him: “James, self-injures. Much of his behaviour can be I love you.” James, who normally never prevented if people support him well. speaks, replied: “I love you.” As a child, he was extremely hyperactive and managed to survive on just a few hours’ sleep each night. The slightest thing could make him very angry. He expressed this in destructive behaviour, but he never once sought to hurt another person. He really enjoyed physical activity and music, and had a delightful sense of humour. Since James Out of sight | 17
  • 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. Joe Joe had been successfully living with a he has said. They must not try to pass it off friend in supported living, but he became with saying: “Ok Joe, yes mate,” if they don’t unsettled when the manager and other understand what he is trying to say, as Joe familiar 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. After an incident, he was detained under the Mental Health Act and sent to a unit 130 miles away from home. Our son Joe is 36 years old. He’s a boisterous person, with a wicked sense of humour. He loves being out and about, and he has a big family who love him to bits. Being at the unit means he hardly gets to see his three nephews, as they are too young to visit. He misses them and talks about them constantly. Joe has a severe learning disability and behaviour that challenges. He doesn’t use many words. When communicating with Joe, staff need to listen to him and repeat back to him what Out of sight | 19
  • 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 support 20 | Out of sight
  • 21. Victoria Victoria has spent a large part of her adult If she doesn’t know what is going on, she life 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 her neglected or not understood and in the last anxious. If her sister comes in dancing and but one unit she suffered abusive restraint. giggling, she will respond well and dance She is now in a residential college where and giggle too. she is being rehabilitated and her family Victoria is sociable, likes cups of tea and hope that eventually she might be moved going out for meals. She can be affectionate to a well run place closer to home. and funny and can form strong bonds with My daughter Victoria is 41 with a moderate people. Some staff have been brilliant with learning disability, autistic tendencies and her. She is a good judge of character – her what is sometimes termed challenging approval is a good recommendation. We behaviour. A double whammy for Victoria communicate by signing and talking at is that she is also deaf. She picked up basic the same time. We also write for her. She Makaton sign language in ten hours in junior loves the Muppets and it is a ritual when school and when she was in a unit with deaf she comes home, to chill in the evening and people using level two British Sign Language watch a Muppet Show. (BSL), she understood that too. You would be surprised to know how frequently the staff who have worked with her have no signing skills at all. There is no excuse for this. We can normally work out why Victoria is cross and displaying challenging behaviour. Out of sight | 21
  • 22. Why are people sent to assessment and James treatment units and other 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 take settings 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 to The path that took James, Chrissy, Eventually, a residential care home was manage James’s behaviour. It was a Joe, Emmanuel and Victoria so found, but it was some way from his vicious circle, where the lack of good far from home is a complicated family home. Before long, we found him support made him more anxious, which one, 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 ‘calmed Not getting the right heating in the home and the residents down’. We know how very frightened he support locally were not being properly fed. would have been by this. The guidance shows how to successfully James was moved to another care support individuals with complex needs10, but home that was also far away, and still all too often it is not being put into practice. there was no proper assessment of his needs. The home claimed expertise in James’s, Emmanuel’s and Victoria’s families supporting people with autism, but we explain what can happen when assessment saw little evidence of this. James was and support is not available locally. neglected, and his health issues, such 22 | Out of sight
  • 23. Emmanuel After 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 eating assessment had been done and the three meals a day. On one occasion, he home just didn’t match his needs. Even physically turned the table up. That was though 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 day they thought it was too expensive – they in bed and most of the night awake. wanted a cheaper option. The placement was breaking down for It became clear after two or three months the staff and for him. His behaviour was that the care home wasn’t working. getting worse, and he was repeatedly The staff weren’t used to someone with inflicting injuries on himself. I asked them Emmanuel’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 in they didn’t listen. to assess him. A psychologist did come round, but because Emmanuel was in bed, Emmanuel doesn’t like big rooms with lots 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 do he was spending all of his time. The TV a proper assessment of his sensory needs, agency staff who came was on all day, and the noise was just but none of this took place. in just didn’t know how too much for him. It was also a ‘house rule’ that everyone had to eat together to engage with him” Out of sight | 23
  • 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. James When 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 periods him have seen the way his behaviour has who was bullying him – this request was when the management and staff were deteriorated. Failed placements, the lack dismissed. Things came to a head when good, for the majority of the time there of 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 behaviour him increasingly angry and frustrated. He had a breakdown and was admitted to an from staff and neglect that amounted has developed a number of challenging assessment and treatment unit. to abuse. He was also given medication behaviours, and he has been labelled that was not needed. After our local aggressive and violent. On top of the trauma he had endured in authority failed to make good on their previous placements, they found that he had James had an awful experience at promise of commissioning a local service, an untreated urinary tract infection. This the 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. By worse. 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 he show behaviour that challenges was we felt there was no choice but to have had received proper assessment and support very 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 and develop new challenging behaviours. sent to another residential care home where Out of sight | 25
  • 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 important 26 | Out of sight
  • 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, their As Victoria got older, she experienced about the age of 16, at the respite place loved one is sent to one unsuitable place other 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 started signing unit closer to home but the offer ripping her clothes. There was quite a was withdrawn. So it was decided she violent fellow client there – I don’t think would be sent to another unit instead. he hurt her but he could have outbursts Her favourite staff at the place where that had an effect on Victoria. “ n the various places she I she was were told to trick her in order has lived, her aggression to get her there. They told her that she was going on holiday. She was taken on has been learned; I hope a nine-hour journey and left with people it can be unlearned” who had no signing skills and who had never met her before. This has not helped her sense of security. Imagine how she must have felt. So many sad things have happened to Victoria. In the various places she has lived, her aggression has been learned; I hope it can be unlearned. When she was at the junior school, the headmistress remarked on how gentle she was. After Out of sight | 27
  • 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. Emmanuel Some families describe the detention of their family member under the Mental Health Act as a sudden and unexpected event. Others Three months after I had voiced my The emotional cost of this experience suggest 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 also and that admission solved a problem for moved to an assessment and treatment been excessive. I still cannot believe how the 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 been Mental Health Act when they meet the admitted to the unit. I had visited him the specific criteria for detention, and families day before at the care home, and no one should always be informed of their rights had told me this was planned. They had once the person is detained. already decided it would happen following an incident about four days prior when But families report they are often uninformed, Emmanuel had been physically aggressive and 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. At the assessment James Chrissy and treatment unit The stories all show how desperate their families were to get them the right help. When he arrived there, James was in Chrissy went to an assessment and Though faced with the prospect of their son a very bad state. He was very troubled, treatment unit because she wasn’t or daughter being sent to a unit, often many withdrawn and had been refusing to getting the right medication and miles 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 service Surely a thorough assessment was exactly where the staff knew what they were what was needed? With a treatment plan doing, then I would feel happy that she that would enable much-needed behaviour was safe, but this has not happened yet. support to be put into place. Maybe this could be the start of better times ahead? They were right to expect this, and there are many units that provide exactly that. Certainly for James and Chrissy, their parents initially welcomed them going into the unit. 30 | Out of sight
  • 31. Getting assessment and treatment 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 get Assessment and treatment units report her medication changed successfully. that they can find themselves dealing This seems to be happening, but with issues, such as missed symptoms of it took them a year to start doing physical ill health, that really should have anything. Initially, she did not get been identified by community services. A the careful monitoring that we’d psychiatrist from one unit gave an example hoped for. The way they found out of someone being admitted with behaviour it was better for her to stop taking a that had become very challenging, but within particular drug was because they had hours 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 to his old self. It is even more concerning that some families report that people are admitted “ nitally, she did not get I to these settings but not actually assessed the careful monitoring or treated. that we’d hoped for” Out of sight | 31
  • 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. 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 people Joe was sectioned and sent away to individual losing skills and becoming less with a learning disability in 2012 found an assessment and treatment unit independent than they were before. that many of the services were not 130 miles from where we live. It’s a meeting essential standards around care five-hour round trip. We agreed to and welfare: drive him there after he had been sectioned. It was heartbreaking ‘When speaking to staff about two care having to leave him there. We visit plans, they agreed that they were not Joe every other weekend, but in the actually accurate.’13 winter we can’t visit because the unit is in a very isolated area and there is ‘We found that staff were very controlling too much snow. in their attitude. Examples of this approach included adherence to ‘house It breaks our heart when we’ve ‘ he risks associated T rules’ that were routinely given as spoken to him on the phone. Sometimes he’s been upset and with congregate, explanations about patient’s choices, care and treatment, and restriction to crying, but there was nothing we institutionalised services food and drink.’14 could do. Joe doesn’t understand how and poor-quality care far 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. Joe Inspections often fail to identify the poor quality of care and abuse in assessment and treatment 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 the an inspection found the service was fully unit. It is a real ‘institution’ with 26 beds. same faces – people seem stuck there. We compliant with all the essential standards of There are set times for things, and everything have been fighting to get Joe out since he quality and safety: ‘People who use this service revolves around set activities. This is the got there two years ago. We never see any were viewed as individuals, and their needs for opposite of what Joe was used to. Previously, other visitors, so we don’t know whether privacy 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. 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 clumsy With regard to other indignities, not meeting essential standards around and it’s nothing to worry about. But they Victoria’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 found it affected her behaviour because she ‘ he patient went on to tell us that they T that James’s service was compliant with the started to throw her clothes on the did not have a good relationship with essential standard around safeguarding. This floor whereas previously she would some staff, “Some of the staff are nasty would have been around the same time that have 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.”’16 her shoe. We complained to the local authority (LA) and were assured that ‘ fourth patient told us, “Staff pretend A the manager personally inspected her to be polite when there are visitors.”’17 shoes every morning. Yes, they really did say this. Good job we took a photograph, not to mention we kept the actual shoe! “ n the unit they were I This 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 staff speak very aggressively to one of the Worst of all, families may sometimes other residents. We raised this, and from start to see a deterioration in behaviour then on we were not able to visit her and experience the growing sense that room and could only see her in a family something is not right. Even though their son visiting room. or daughter can’t tell them what is going on, they know that something is wrong. They Out of sight | 35
  • 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. Victoria Secrecy, deceit and lies have occurred aggressive to other clients – prior to this they “only restrained her four or five at some units. At one unit, Victoria lost placement, this was not the case. They times per week”. I wonder how many her second front tooth. The first loss had had deliberately covered up that another times they were restraining her before if been 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. Restraining this, she had been noticeably careful not the same section as this aggressive client. deaf people takes away their ability to to repeat the experience. We were told it When Victoria was removed from danger communicate, which is barbaric and was 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 we when 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, they struck. That got us thinking and, on – they had not disclosed this. I found were abusing their power – it was simply phoning the unit to ask if anyone had out at a tribunal meeting a year after barbaric. There was no proper strategy been 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 risk punched in the mouth by X”. When very sympathetic to this unit and asked assessment that took her health issues we enquired higher up, the director of how her mother managed to take her into account. They do not use restraint at nursing was duly outraged. “Who told out on her own and her family did not the college where she is now. This proves you?” he blustered indignantly. need to restrain Victoria while at home. that the need for restraint for Victoria is Significantly, their own records had In July 2010, Victoria was given notice nonsense. She should never have had to indicated that Victoria had become to leave and we were informed that now go through this. Out of sight | 37
  • 38. How do they get out? Problems surrounding the discharge and The CQC’s recent inspection programme between health and social services, and transfer to an appropriate support service found that one person had been living in an while the battles go on, the impact on the near 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 inspection be time-limited and should include an report from 2011, the inspector seemed In the stories below, it is also incredible appropriate assessment, a treatment plan to think that remaining at the unit was a that parents and families are often and timely discharge. Many units report that positive thing: expected to find alternative provision for they start to plan the discharge of the person their son or daughter. This is a failure by ‘ he manager and deputy manager T as soon as they are admitted. However, the the NHS and social services to carry out their were able to tell us about many positive evidence suggests that people are spending legal responsibilities. experiences of patients since being here far 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 and The CQC Count Me In 2010 census looked show how hard it is to get discharged and at providers of inpatient learning disability negotiate an appropriate package of support services. It found that 67% of all patients in closer to home. The funding arrangements England and Wales had been in hospital for that are currently in place in many areas one year or more, 53% for two years or more can work against the incentive to get people and 31% for more than five years. out. Funding disputes seem to be common 38 | Out of sight
  • 39. James Chrissy James remained in the specialist learning package. However, the fact is that he Chrissy is still in the unit after two disability 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 local Following the safeguarding investigation, five years. provision that could meet her needs. the unit has been adapted so that there is now a single-person service for Her medication changes should James within it. In an improved physical be completed soon, so we need to environment and with staff support start planning her future placement, tailored to his needs, James’s challenging especially as we know it could take behaviour has greatly reduced and things about a year to find somewhere have slowly improved. suitable. The commissioners were refusing to start planning because of But James should never have been placed a dispute over which area will fund in the unit to begin with – it would not Chrissy’s package of care when she have been necessary had he not been leaves. They are still not starting to left 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 to he was ready to leave. But since then, involve a solicitor because of problems four years went by while the authorities getting the right care for Chrissy. argued over the funding package needed to bring James back to where he belongs. Finally they have agreed and we have found a house for James where he can live independently with a 24-hour care Out of sight | 39
  • 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 in 40 | Out of sight
  • 41. Joe Joe has been in the assessment and decorating the property, and now it’s all treatment 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 training confirmed that the PCT would fully secure and getting to know him. The date for his package of care when he leaves. him to move in has been agreed after lots Because of this, the local authority of pressure from us, so hopefully he will has 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, as had to find a provider we are happy with we just haven’t been able to get Joe and contact housing providers to find a home. At times, we thought we would suitable house for Joe. never get to where we are now. I’m At the advice of the psychologist at the worried about how he is going to cope “ t was left to us to sort all I unit, Joe is moving into a single-person with living alone with just two members service. We were concerned about this at of staff, having been in an institutional this out. Had we not been first, as we don’t want Joe to be isolated, setting for two years. I think he’s going doing it ourselves, nothing but 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 will ourselves, nothing would have happened. have to adjust to ordinary living because he was left in an environment he should It 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. 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 people 42 | Out of sight
  • 43. Questions raised by these stories Why are local services unable to support ow can someone end up in an H the people in this report so they can assessment and treatment unit live near their families in their local when all they needed was a change communities? in their medication or to be treated for a urine infection? hy aren’t proper assessments carried W out and behaviour support plans put ow did the CQC and adult safeguarding H in place? teams miss these clear examples of neglect and abuse? hy do some staff working in these units W accept neglect and abuse as the norm? hy are decisions around funding and W placement allowed to take so long? W hy are people put in places where staff don’t have the necessary skills or ow can those responsible – the H training to communicate with them? government, regulators, commissioners and providers of the services – allow these things to go on? hy have the families of the people W in this report been left to find suitable support for their sons and daughters themselves without help from the very services being paid to support them? Out of sight | 43