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The
Tough Times Project from the NDT
Raising the profile of adults with learning disabilities
‘trapped’ in the secure care system |
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Introduction
The Reed Review and the Mansell
Report in the 1990s set the social policy direction for
adults with learning disabilities who exhibited challenging
behaviours or mental health needs and those who were at
risk of offending. These reports emphasized the need to
treat people in the least restricted environment, in community
rather than institutional settings and supported as near
as possible to their homes and families. Both reports
recommended that, “The framework of local services
must be sufficiently comprehensive to meet the needs of
offenders with learning disabilities.”(1) Yet, local
capacity has not been sufficiently robust in developing
specialist health or social care provision and expertise
to meet the needs of offenders with learning disabilities
or those who present a challenge to traditional services.
Instead an alternative market has expanded to meet those
needs; resulting in people being cared for miles away
from home in secure or locked placements, often in the
independent sector. This market exploits local gaps: in
the quality and utilisation of information as well as
in the extent of local involvement by providers and commissioners.
Gaps also occur in inter-agency planning for this small
volume but high cost population and in the priority afforded
to these individuals. The financial and human cost of
continuing these arrangements is too high a price for
individuals and their families concerned – out of
sight must never be out of mind.
Background
The National Development Team obtained
a small grant from the Department of Health under Section
64 of the Health Services and Public Health Act 1968,
which provides grants to voluntary organizations whose
activities support the Department’s policy priorities.
The National Development Team hosts the Tough Times Project
which aspires to raise the profile of adults with learning
disabilities ‘trapped’ in secure care. This
project runs from 2004-2007 and this report summarises
the learning that has occurred over the first year’s
work. During year one, the NDT worked with four Regions:
the North West, Yorkshire and Humber, Eastern and East
Midlands to identify the stakeholders involved, produce
and analyse a questionnaire and arrange or attend a regional
learning day to explore the processes that result in people
with learning disabilities being sent to or kept in secure
care. The regions and their respective localities are
not homogeneous – they have different service gaps
and some innovative service models but there is some commonality
in the dynamics that result in people ‘trapped’
in secure care and they can be grouped under the following
headings, ‘information’; ‘involvement’,
‘partnerships’ and ‘priority’.
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| Information:
how can localities
create or re-design local services to meet the needs of
people sent to or remaining in secure care if all the
essential stakeholders don’t know who is where or
how much it costs? |
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Information
about adults in all levels of secure care comes from a
variety of sources and is sent to a variety of local organisations
but often there is no single forum where all information
can be reviewed by clinicians, practitioners and commissioners
across health and social care. |
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Regional secure commissioning
teams and/or lead PCT specialist commissioners have information
on high and medium secure NHS placements. Their information
on low secure NHS placements and on all independent secure
provision can be incomplete and of variable quality. |
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There is confusion
about definitions of ‘low’ and ‘medium’
secure care – is this based on an objective assessment
of risk and how that translates into the level of security
required or is it based on the availability of a bed?
Commissioners and clinicians remain confused about what
constitutes the need for ‘low’ as distinct from
‘medium’ security as there are no nationally
agreed definitions. |
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Primary Care commissioners
can spend millions of pounds on a few secure placements
in the independent sector, but they may choose not to
share this information locally with their health or social
care providers. |
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Locked residential and
nursing care homes may be funded from social services,
health or through pooled budgets. However, this information
may not be routinely reviewed within local partnership
forums, as one respondent to our questionnaire indicated,
“the information is available on the basis of who
is paying the bill” – this needs to change in
order to quantify the size of local need and any service
gaps. |
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Learning Disability Partnership
Boards have the potential spread or representation from
all local services; they need to make effective links
with local lead and/or regional secure commissioners and
providers in order to be informed, ensure that the quality
of care received is being monitored locally, and develop
a range of provision and capacity to support the timely
return of their individuals in secure care. |
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Involvement:
When someone is in a
secure placement, who remains involved –
and what difference does that make? |
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Care pathways into secure
provision are changing and more people are entering and
leaving high secure care from the Courts and prison service
rather than NHS settings (2).
Often local services only become aware of these individuals
once they have been released from Prison and turn up to
their offices homeless; they previously may not have met
their threshold criteria for services (Eligibility for
services written under the Fair Access to Care can often
be used to exclude people with mild/borderline learning
disability who are at risk of offending.) |
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If the person has been
known to local services prior to being placed in secure
psychiatric care, most local services remain involved.
However this can depend on the distances and priority
within local services – the further away, the less
contact. |
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If the person has not previously
been known, they may remain invisible to local services
until the commissioning PCT decides to stop funding their
placement. Clinical involvement and partnership between
local providers, commissioners and people in secure placements
must be started well before this issue arises! |
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Families can not always
afford to visit and there is little clarity over who is
responsible for subsidising their visits – is this
part of the commissioning contract and the hospital pays?
Is this the responsibility of the local social care service?
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What is the quality of
local involvement? One of the responses to our questionnaire
indicated, “Active planning for return is limited
by the time constraints and the lack of options for return”.
Local commissioners, health and social care providers
should all be involved and have clarity about their respective
role for through-care. |
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What is the outcome of
this involvement? Does it bring people back to their localities
more quickly? Local services should remain involved through
CPA and the Local Authorities and Secure Protocol (3),
but this will only become worthwhile if they have the
authority to plan, provide and commission an individually
bespoke service for a person’s return. |
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| Partnerships:
If we aren’t
working together on this, then people will remain locked
up! |
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It often takes eight different
agencies to all say ‘yes’ at the same time before
a person can move out of secure care: the multi-disciplinary
team, mental health review tribunal or Home Office, the
local services, family, local commissioners and a local
provider unit. All of these agencies and individuals are
involved in a partnership with the person concerned to
maintain or shorten their stay in secure care. |
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Healthy working relationships
are needed that span health, social care, the independent
sector and criminal justice agencies. Such relationships
will cross borders and localities and provide a forum
for information sharing and service development. |
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Local standards for community
learning disability teams should support local partnerships
by identifying the unique and collective roles of each
discipline, shared eligibility criteria, joint working
arrangements and supporting access into other services. |
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Protocols with executive
authority to support the pathway between services (mental
health and learning disability; children to adult) should
be agreed and monitored with processes for prompt dispute
resolution. |
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Commissioning arrangements
for secure provision vary across the regions – some
split this between individual PCTs and the Regional Specialised
Secure Commissioning Teams; others have lead PCT arrangements
commissioning all levels of secure care. This causes confusion
about who is responsible to develop which services: regional
specialised commissioners, lead PCTs or local learning
disability partnership boards. As one respondent indicated,
“LDPB’s need to be clear about who they are
planning for and which services are appropriate specialised
Learning Disability services and which are specialised
Mental Health services that Learning Disability services
need to work closely with. Once there is clarity about
what should be provided by whom it seems clear that small
LDPBs/LAs/PCTs need to work co-operatively with neighbouring
LDPBs/LAs/PCTs in order to commission services “closer”
to home. The high cost and high risk make it very difficult
for small areas to develop local service because the numbers
are relatively small.” |
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The
Learning Disability Partnership Board and Local Implementation
Team for mental health need to work more closely in partnership
in order to minimise duplication and ensure that all service
users benefit from the standards set in the National Service
Framework for mental health and the principles in Valuing
People. “Key Principles of Rights, Independence,
Choice and Inclusion apply equally to people with learning
disabilities in secure care as in any other environment.”
(4) |
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| >>> cont. from
left column |
| Priority:
does out of sight mean
out of mind? |
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Bringing people back from
secure care is not something that requires convincing
the ‘hearts and minds’ of individuals or professionals
concerned – this project found vast agreement with
Reed, Mansell and the principles in Valuing People. But
if these principles are to be actualised, if this is to
have meaning beyond just words, then the priority afforded
to these individuals must radically shift. |
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The need for leadership
at all levels is fundamental: locally to create opportunities
for professionals to work together to generate solutions
across traditional service bunkers; creating ‘virtual
teams’ (as coined in the Green Light for Mental Health
or as exemplified through multi-agency public protection
panels) bringing together commissioners, clinicians, carers
and service providers to work with the person concerned
to individually design a local service based on the aspirations,
needs and risks assessed in their person-centred plan.
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Out-of-area
placements require greater scrutiny and should be monitored
through the health and social care local delivery plans.
The Department of Health commissioning guidance released
in November 2004 reiterated their concerns about the use
of out-of-area placements, “Costs of such placements
can be high and may represent a significant percentage
of the local area’s budget for learning disability
services. This can place local commissioners in the position
where they recognise the need to develop appropriate local
services but are unable to do so because of lack of available
resources.” (5) |
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Securing commitment from
the Strategic Health Authority to ensure that this issue
is managed within and across localities, joining up the
lead PCT or regional specialist commissioners and providers
of secure care with learning disability partnership boards
so that services plan together to deliver a range of provision
and competence required to support these individuals.
As one respondent to our questionnaire stated, “Engage
with neighbouring authorities to look at joint commissioning
of services. Work with providers to establish appropriate
skills within staff teams. More effective working with
mental health services, improved access to outreach services.”
The goal is to deliver a range of local skills and provision
to support individuals closer to home. |
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Innovative or bespoke service
provision and sophisticated commissioning that have been
successful in rehabilitating people back home from secure
care need to be analysed so that the conditions for success
are identified and replicated. |
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Money should be ring-fenced
from the Learning Disability Development Fund or the regional
capital planning programme to
“Enable local providers to develop specialist services
for people with severe challenging behaviour: e.g. small
step down facilities to enable people to move on from
more secure accommodation, additional homes to reduce
reliance on out-of-county placements, respite homes.”
(DH-HSC 2001/016 LAC (2001)23) |
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The lack of ‘targets’
in relation to this service area has not provided the
priority incentives for change. The Department of Health
& Healthcare Commission need to herald this as a priority
area to ensure that the recommendations contained in Reed,
Mansell and Valuing People are not aspirational but are
delivered - incorporated into Standards for Better Health,
otherwise this situation is likely to remain unchanged.
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| Illustrations: the
consequences of in-action |
| There have been two recent
national studies that have started to quantify the use
of the independent secure sector for adults with learning
disabilities - one completed by the Healthcare Commission,
supported by the Valuing People Support Team, the other
by Selby and York PCT. (We are very grateful for their
permission to share this information). The Healthcare
Commission conducted a census of all independent mental
health hospitals registered to provide care and treatment
for people with a learning disability as of 31st March
2004. This is what they found: |
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There are 46 hospitals
registered within the Learning Disability category, with
a total of 968 beds. Of these, 40 hospitals responded
to the census, representing 794 beds. (88% response rate) |
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Of the responses, 26% of
the patients were detained under criminal provisions of
the Mental Health Act (Part 3 of the Act); 41% were detained
under the civil provisions (Part 2 of the Act) and 33%
were ‘informal’ patients – they
were not formally detained but were kept in locked environments.
In light of the recent European Court of Human Rights
decision in the Bournewood case (HL v the United Kingdom),
it seems likely that a number of the informal patients
may well have been “deprived of their liberty”
within the meaning of the Convention and as a consequence
had their Article 5 rights (to liberty and personal security)
infringed. This could therefore be viewed as ‘unlawful’. |
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The closest person lived
1.3 miles from their Partnership Board (‘home’),
while the furthest person lived 385.2 miles away from
home. The average was 74 miles away from home. (Although
in some large shire counties, this placement may be within
their home ‘area’ it is still a significant
distance and has an impact on the ability to maintain
contacts with family and friends.) |
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Difficulties in finding
a bed could mean that all the detained patients would
have been sent furthest away from home. This was not the
case as both the most local and the furthest hospitals
had informal patients solely. |
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People
with a learning disability placed in secure psychiatric
care are vulnerable as they are isolated from family members
and friends and receive fewer visits from care managers
and commissioners. (Research included in the Healthcare
Commission Study from the Tizard Centre.) (6) |
| Selby and York PCT (who
host the Regional Secure Commissioning Team for Yorkshire
and Humber) were interested in capturing data on the NHS
expenditure on medium and low secure forensic services
commissioned from the independent sector 2004/06 as at
the 28 February 2005. This is what they found: |
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They received information
on 22 different independent providers offering 144 places
to patients diagnosed as learning disabled. Some providers
had up to 10 different forensic ‘houses’ or
units to use across the whole service spectrum of mental
health, learning disability, personality disorder and
child and adolescent services. Some units could not report
the diagnosis of some of their patients. |
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Of the
144 patients identified, the NHS was spending an excess
of £20.2 million for the full year effect for those
placements. The most expensive ‘bed’ recorded
cost £875/day. (Anecdotally in the Eastern Region,
one commissioner was spending in excess of a million pounds
a year for one secure out-of-area ‘bed’.) |
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Neither study is a definitive
illustrator of national uptake but they do offer an interesting
spot-light that begins to highlight the scale of this
issue. The secure independent sector is growing and people
are being sent miles away from home. Determined leadership,
creative redesign of local services and effective partnerships
would ensure that funds were used more appropriately resulting
in some of the most excluded members of our communities
having greater life opportunities closer to home! |
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| Appeal |
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the second and third year of this project we will: |
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Research the care pathways
into and out of high secure care by mapping individual’s
stories. We would therefore like to make contact with
teams where there has been success in rehabilitating a
number of individuals with learning disabilities back
home from a period in secure care. |
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Explore local solutions
– are there some localities effectively providing
for offenders with learning disabilities or challenging
behaviours because there is shared information and involvement,
local resources and partnerships, leadership and priority
given to this population? If you have good working relationships
across the health, social care, criminal justice and the
independent sector and provide services that prevent people
going into secure care, we want to speak with you about
your services. If you have good relationships with your
independent housing or support providers and successfully
work together to keep people with ‘severe reputations’
in their home areas, please let us learn about your local
partnerships. |
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Collect examples of what
you think a ‘good service should provide’ in
order to convert it into a checklist for those monitoring
the value for money of out-of-area placements. |
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good examples will be looked at and reviewed by a small
working group in order to share, build upon and herald
good practices. If you can help with any of these three
areas identified above, please contact: Wendy Silberman,
Associate Consultant, The Tough Times Project: wendy.silberman@ntlworld.com,
Telephone: (0115) 952-4183. Thankyou.
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| Notes and references |
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1
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Services
for People with Learning Disabilities and Challenging
behaviour or Mental Health Needs, 1993 |
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2
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We are grateful for the
following information from the Patient Case Register at
Rampton Hospital, covering a ten year cohort of admissions
and discharges, from 1991-2000. From those admitted during
that time period, 37.8% were admitted from psychiatric
hospitals, 60.5% were admitted from the Courts, Prisons
or Youth Offending Institutions. From patients discharged
during this period, 56.4% had been admitted from psychiatric
hospitals, the largest being ‘subnormality’
hospitals (39.5%); 43.2% were admitted from the Courts,
Prisons or Police. Over this period a shift of nearly
20% has occurred in the care pathway into Rampton hospital
from psychiatric hospitals to criminal justice services. |
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3
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Protocol
for work between High Secure Hospital Social Care Services
and Local Authority Social Service Departments, Best Practice
Guidance, NIMHE, 1 December 2003. |
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4
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Valuing
People, A New Strategy for Learning Disability for the
21st Century, 1999. |
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5
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Department of Health,
Commissioning Services Closer
to Home: Note of clarification for commissioners and regulation
and inspection authorities, November 2004. |
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6
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Please note their research
report pending full release,
“Too far to go? People with Learning Disabilities
placed out-of-area.” Tizard Centre, University
of Kent, May 2005. |
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