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No voice unheard, no right ignored
a consultation for people with learning
disabilities, autism and mental health
conditions
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The new Green Paper
• Is a consultation from the
Government
• In it are ideas that might
become law
• Before this happens, the
Government have to ask
everyone what they thinkabout the ideas and get
their feedback
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What is the timescale?
The consultation runs for 12weeks and began on the th
!arch 2"1#
It ends on 2$ !ay 2"1#
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What is the new green paper
about?
It aims to give people with
learning disabilities,
autism and mental health
problems more rightsabout the care they get
and the way they are
treated by the %&' and
the care system(
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Care and Support Minister Norman
Lamb MP
• People are in charge, supported
by family and friends• People are included and are
independent in the community
• People have the right care in
the right place• That there is very clear
accountability and responsibility
throughout the system
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Gavin arding M!"
‘’I hope to see this paper
changing a lot of things for
people with learning disabilities,
mental health needs or autismabout some of England’s worst
care.’’
‘’Mae the lives of all peoplewith disabilities a good life
without barriers.’’
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The vision
)ll disabled people, including thosewith learning disability, autism or
mental health needs, have a right to
lead their life like anyone else, with
the same opportunities and
responsibilities and to be treated withthe same dignity and respect(
*eople and their families and carers
are entitled to the same rights asothers(
)ll services should first and foremost
see the person and their potential(
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Wh# the need $or change?
• *eople have been let down by the
system( *eople and their families
have not been listened to
• *eople have not been treated as
the one who has the e+pertise and
so they have not had the right to
be in control of their own lives
• There are still people who are
having long stays as an inpatientin hospitals or residential care
against their wishes
• or some people things are still
the same as many years ago
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%nstitutionalised Care
• In the -ictorian times the type of
care for disabled people, especially
those with a learning disability,
autism and mental health needs,meant they were separated from
their local community often in very
hidden and faraway places
• These types of places were calledasylums
• This kind of care made poor care
and abuse to happen
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• .ver the last /" years these types
of places have been shut down(The last asylums were closed at
the end of the 1$$"s
• %&' long stay hospitals andcampuses have also been closed0
in 2""2, there were over """
%&' long stay and campus beds
in 3ngland( !ost of these havenow closed
• )ll %&' long stay hospitals were
closed by the end of 2"1"11(
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• Information including the work of
the 4are 5uality 4ommission
shows that there are still too many
people with a learning disability or
autism, and mental health
problems who are still being
admitted to inpatient settings
• They stay there for long periods oftime 6 for some years and very far
from home
ave things changed?
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• In some settings levels of
medication, restraint and self7
harm are high
• 'adly, we also know of a
number of deaths
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Winterbourne &iew hospital
)fter the BB4 *anorama programme
of the 8interbourne -iew hospital,
the 4are 5uality 4ommissions report
into their reviews of learning disability
hospitals found that overall levels of
compliance on care and welfare of
people using services andsafeguarding people from abuse
were low
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The 'ustice $or L! (Laughing !o#)
campaign
Family carers of 4onor 'parrowhawkand their supporters have also made
a powerful argument on what people
have a right to e+pect, saying theywish to0
‘’mae it a legal reality for disabled
people to be fully included in their
communities and to mae it harderfor the !tate to force disabled people
to leave their homes against their
wishes, or the wishes of their
families."
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The Governments ideas and *uestions
$or us to answer
There are lots of 9uestions :1/;
to answer but we think it is really
important to feedback so the
Government get this right(
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+ M# right to be independent, to be part o$ a
communit# and to live in a home % have chosen
• &elping people stay close totheir communities
• &aving enough services in the
community
• )ssessment and treatment in
the community and the
!ental &ealth )ct
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-uestion +
These ideas are trying tohelp people to be part of thecommunity.
Would they help to stoppeople being sent awayfrom their home and family?
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. M# right to be listened to and have
m# wishes acted upon•
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-uestion .
These ideas are trying tohelp people play a fullpart in their care andmake sure the NHS andLocal uthorities listen tothem.
!o you think they willhelp?
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/ %nvolving people and their
advocates
*eople working together is very
important(
*eople and their advocates need to
be taken notice of(
*eople with learning disabilities orautism and families on the Boards
of services(
*eople should have a place in
helping to run and control services.
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-uestion /
=o you think that only servicesthat involve people with
learning disability or autism
and families running them
should get contracts with the>ocal )uthority or %&'?
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0 elping people use their rights
'ome people need more help to put
over their views, feelings and beliefs
They may need support to be able to
do this(
This support can come from0
• amily 6 including @nearest
relativesA under the !ental &ealth
)ct
• )dvocates 6 including Independent
!ental &ealth )dvocates
• *rofessionals 7 including social
workers(
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-uestion 0
These ideas are trying to make
sure more people get support
from families, social workers and
advocates called Independent!ental &ealth )dvocates(
They have a part to play in
peopleCs care and helping thembe listened to(
=o you think they will help?
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1 Support i$ something goes wrong
It can be hard to know what to door to get support if something
goes wrong(
It should be easy for people tocomplain(
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-uestion 1
=o you think anything else is
needed to help people to speak
up if something has gone wrong?
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2 M# rights and the Mental ealth 3ct
&ow the !ental &ealth )ct is
used for people with learning
disabilities or autism(
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-uestion 2
8hat do you think about the idea
of people with learning disability
and autism0
• not being sent to hospitalunder the !ental &ealth )ct or
• only in a smaller number of
situations or
• only sent if a court sendsthem?
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4 3 single path $or Mental ealth 3ct
assessment and treatment
The !ental &ealth )ct can be
hard to understand( *eople
can go for assessment andtreatment under different
rules(
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Question 4
8hat do you think about the
idea of making the !ental&ealth )ct law easier to
understand and follow with
one path into hospital for
assessment and treatment?
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5 The Mental ealth 3ct and people who plan and bu#
services $or the NS
*eople who plan and buy services for the %&'
should have to make sure that the !ental&ealth )ct works well(
There is a D4ode of *racticeC for the !ental
&ealth )ct which hospitals have to follow unless
there are really good reasons for not doing this(
But, the law does not say that the people in the
%&' who plan and buy services in hospitals
have to follow the 4ode of *ractice(
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Question 8
=o you think we should change
the law to make sure that peoplewho plan and buy services for the
%&' have to follow the 4ode of
*ractice guidance about the
!ental &ealth )ct like hospitalsdo?
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6 7sing police cells and holdingpeople in hospital instead o$ prison
'ometimes, when people have a mental health
crisis, they are taken to a place of safety(
It is usually a hospital but sometimes cells in
police stations are used(The Government want to0
• cut down on police cells being used a Dplace of
safetyC
• make sure no children and young people are
kept in police cells• where people are kept in police cells, to make
sure it is only for a short amount of time
• see if people from other services could take
people to a place of safety and not Eust the
police
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Patients who are held in hospitalunder the Criminal Justice System
• 'ome people are patients under the !ental
&ealth )ct through the 4riminal Fustice
'ystem• Instead of going to prison they have been put
into a hospital( They are called Drestricted
patientsC
• Some "restricted# patients cannot lea$e
a hospital to li$e in the community in a
safe way at the moment• Some people are in secure hospitals
when they might be able to be in thecommunity under strict rules
• The %o$ernment are thinking about
whether the law should change to allow
this to happen
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Question 6
These ideas look at how tomake things better for people
who are being kept safe in
police cells or are being held in
hospital instead of prison(
8hat do you think?
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+8 M# right to control m# own supportand services with a personal budget
• The Government think a
personal health budget would
work well for people with alearning disability or autism(
• It could pay for care and
treatment in the community(
• This could be for somepeople who are in mentalhealth hospitals at the
moment.
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Question 10
8hat do you think about more
people with a learning disability
or autism having personalhealth budgets?
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++ Putting di$$erent sets o$ mone# together
(pooled budgets)
• &eople who buy ser$ices forthe NHS and Local uthorities
sometimes put their moneytogether for mental health andlearning disability ser$ices
• This does not happen everywhere
• The Government wants to look at
setting this up throughout thecountry
• This could mean there is money for
people to move back into their
communities when they are ready
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-uestion ++
8hat do you think about making
local areas having to put theirmoney together to help people
get out of hospital?
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+. Sharing %n$ormation
• *ersonal information should be kept
private but important information
about what care people need
sometimes has to be shared(
• The Government thinks that it
should be the law that people who
are providing care at the hospitals
or care homes should have to share
information with commissioners
• They think that sharing information
will help get the right care for people
or help if there are worries
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-uestion +.
=o you think it should made
clearer when people who buy
care have to share information
to support peopleCs care and
keep them safe?
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+/ Who is in charge o$ supporting m#
ph#sical as well as m# mental health
) personCs physical health needs must
also be looked after when they are in a
mental health hospital(
The Government wants to make it very
clear who has to do what, including0
• who buys physical healthcare in the
area where people are staying in a
mental health hospital
• what the hospital has to do
• what the main doctors have to do
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-uestion +/
=o you think the Governmentshould try and make it more
clear who has to make sure
people are physically well when
they are in mental health
hospitals?
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+0 Last *uestion
Is there anything else you think
is important about these
changes?
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The di$$erent wa#s people can respond to the
consultation :
By e7mail to0 norightignoreddh(gsi(gov(uk
.nline at0 http0consultations(dh(gov(uk
In writing to0
4onsultations 4o7ordinator
%o Hight Ignored 4onsultation=epartment of &ealth
rd loor )rea 1), Hichmond &ouse
$ 8hitehall
>ondon '81) 2%'