wasted lives

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Wasted lives – missed opportunities
Background to the project
Attention deficit hyperactivity disorder (ADHD) is a highly genetically predetermined disorder that
affects sufferers in many ways throughout their lives. The core symptoms of impulsivity,
inattention and hyperactivity give rise to a plethora of difficulties that affect behaviour, emotions
and the ability to learn social skills. Undiagnosed and untreated ADHD leaves young people
vulnerable, marginalized and at a great risk of not achieving their birthright potential.
Mary grew up in care, rejected at birth by the parents she doesn’t know. Being
‘different’ at school she soon found that she had few if any close friends. Always on the
go, never resting, never stopping to seemingly draw breath, Mary out paced her peers
and led a solitary young life. At times outspoken in the foster home, Mary was often
punished for being wilful and for expressing herself with ‘tantrums’ and anger. Carers
couldn’t cope with Mary and by the age of five she had been looked after by four
different families as well as having spells in council run care homes. As Mary grew
older other children shunned her, her self-esteem got lower as teachers called her
stupid and punished her with endless detentions and withdrawn privileges. At the age
of eleven, having being totally humiliated by her teachers for her poor academic
performance Mary set fire to her school. It was raised to the ground. The police
caught Mary; she had remained in the school grounds, fascinated by the fire. She was
referred to a psychiatrist and over the next five years diagnosed with three different,
and conflicting mental health disorders. For one period of six months she was forcibly
kept in secure accommodation, as she was deemed too ill to be allowed into society.
Mary was receiving no education worth noting, the inputs she did get were inadequate.
She didn’t concentrate, she didn’t care and she didn’t actively participate. She became
more and more defiant and was rejected by all those around her. At nineteen, uneducated,
Mary was a reject from society, a criminal, a habitual drug taker and an
alcoholic. On many occasions she had attempted to take her own life, she felt it wasn’t
worth living. Thankfully, and unusually, Mary was then recognised by a specially
trained social worker as possibly having ADHD. After many struggles the social
worker had Mary seen by a specialist psychiatrist who confirmed her ADHD and
prescribed medication for her. Mary became motivated to do better, went back to
college and in a single year sat three ‘A’ levels, all of which she passed with flying
colours. She is now under the regular care of a leading psychiatrist and she is a
student at Cambridge. Mary, in reality, was lucky, not many young people with ADHD
have such a happy ending.
A ground breaking project being orchestrated by officers in the Lancashire Constabulary is
addressing the needs of the many Mary’s in the County with a commitment to altering the trajectory
from genetic disorder to a chaotic lifestyle and giving the ADHD sufferers of Lancashire a greater
chance to achieve their birthright potential.
It is vital that we understand the biological, psychological and educational issues within ADHD and
the inherent need for collaborative inter-agency approaches to achieve success. Within the
Lancashire project, managers and key workers from a wide range of agencies are presenting an
alternative future to young people.
This paper outlines why Lancashire Constabulary’s DDAP (Development Disorders – Achieving
Potential) project is gaining national and international recognition.
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The DDAP project
Lancashire Constabulary’s solution is based on three separate foundations:
· Previous academic research on ADHD and it’s affects on people’s lives
· The existing knowledge and experience of experts from around the world, and
· The fertile ground that is allowing for a step change in public services with the advent of a
changing political agenda for preventative services.
The project has developed a multi-agency framework for service provision that has a focus on the
performance criteria of the individual agency, rather than expecting participants to alter their
organisational focus to one of crime reduction. Should the agencies involved in DDAP assist the
relevant young people to achieve their potential, an anticipated outcome, it is an expectation that
entry into crime or recidivism will naturally reduce as a direct consequence.
DDAP has deliberately not restricted the activities of the project to a single age group, within the
alliance framework participating agencies concentrate on the catchment age profile of their existing
client group, e.g. for Connexions this would be up to age 19 years whilst for the police involvement
this would stretch beyond this boundary.
23% of crime is committed by people with undiagnosed or inadequately treated mental illnesses
such as ADHD1. 5% of the general population are believed to suffer from ADHD yet in 2001 her
Majesty’s Inspector of Prisons reported that up to 50% of the prison population had some form of
mental illness. Reducing the disproportionate nature of this population / prison balance is a driving
force behind DDAP.
The project is located in the boroughs of Burnley and Pendle, both of which are in East Lancashire,
an area of higher than average deprivation. The decision to locate the project in East Lancashire
was made due to the high levels of commitment and support within the East Lancashire Child and
Adolescent Mental Health (CAMHS) team and the governing Primary Care trust (PCT).
DDAP is managed through a project board. Each participating agency has a place on the board, but
where agencies are clustered around a delivery theme, e.g. schools and education psychologists, one
person represents the ‘theme’ at the monthly meetings. Thus the board is tight, focused and able to
make decisions expediently and effectively.
DDAP has representation and participation from the majority of agencies that could be involved
with mental health sufferers in the wider context. At the younger age bracket are health visitors and
Sure Start staff whilst in the more senior category Social Services, the police and the voluntary
sector are active contributors.
Additional vulnerabilities and co-current issues frequently manifest within ADHD sufferers. DDAP
is engaged with a wide-range of partners to tackle headlining issues such as: -
· Teenage pregnancies, addition risk of unwanted pregnancy is 41:1
· Community drugs teams acknowledging that ADHD and associated co morbidities provide
higher risk of a fast track into substance misuse
· Domestic violence groups working with offenders and victims acknowledging that ADHD
leaves a person nine times more likely to be involved in domestic violence
· Youth offending teams tackling the increased risk of re-offending from 1.7% within the
‘normal’ population to 31% within the ADHD population
1 British Medical Journal. Article 3197, 23 May 1998.
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Fig 1.
Wheel and spoke
Parenting groups had previously struggled to get support and help when parents themselves
recognised their child was getting difficult to control. The newly formed parent support group, built
into the management of the project, offers support and a signpost into the participating agencies.
Partner agencies have each produced an individual, mental health specific action plan as part of the
DDAP process. Uniquely these plans include three elements, i) what the agency recognises as
service improvements, ii) what the agency recognises it needs to higher standard from partners and
iii) what the agency can deliver, with the project in mind, to higher standard to partners. As a suite
of DDAP development plans these are quality assured by ADDISS, a process that places the
voluntary sector at the forefront of the project. The model, referred to as the ‘handshake model’ is
instrumental to the development of true allied services across the participating agencies.
Fig 2.
Allied services handshake model
Feedback from parents, carers and sufferers of ADHD indicate that having to access services
individually is itself a barrier to progress, let alone the additional obstacle that ADHD in the family
can bring about. A key aim of DDAP is to provide care pathways for parents, carers and sufferers
to reduce the maze of services into a more organised and identifiable allied service. The provision
Voluntary sector quality assurance - ADDISS
Young people achieving their potential
Education
YOT
Lancaster
Farms
Communication and liaison is a vital component of
DDAP. The board have developed a ‘wheel and
spoke’ philosophy, whereby agencies work in alliance
to identify mutually beneficial service improvements
and to assist the ‘greater good’ of the project. Cofunded
posts, support across agencies for the common
goal, such as parenting training, are exemplars of true
multi agency activity that has occurred within DDAP.
The combination of the statutory agencies plus the
voluntary sector brings an unparalleled strength into
DDAP. The voluntary sector offers a level of expertise
and practical assistance that reaches far beyond the
existing levels of competence found amongst core
service providers. Agencies such as ADDISS, the
national ADHD support group, are therefore a
principal component of DDAP.
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of a Multi Agency Care Pathway (MACPATH) and the associated wrap around services will remain
the centre of attention whilst DDAP matures.
Activity focus
Untreated or undiagnosed ADHD leaves young sufferers vulnerable to failing to achieve their
potential, a trajectory that leads directly to wasted lives. DDAP is designed to alter the course of
that trajectory and to help sufferers and their carers to break the cycle.
Educational achievement, or lack of, social marginalisation, depression, absenteeism from the home
and school, residing in care, entering the criminal justice system, depression, drug abuse and being
extraordinarily accident prone are some of the more common associations with untreated or poorly
treated conditions such as ADHD.
Sufferers frequently have behavioural difficulties that co-exist with the core issue. ADHD sufferers
often cannot effectively ‘read other peoples faces’, a core component of any meaningful
interpersonal activity, they often show a lack of restraint, especially when under stress and,
worryingly for parents, young people with ADHD are often gullible and easily led by others.
Emotional development within the ADHD person is often slower than the ‘norm’ and scientists
have recently claimed that the emotional ‘fallback’ is up to one third. Imagine an eighteen year old
with an undiagnosed emotional ability of that more akin to a twelve year old.
Not all young people with ADHD go wrong, however, most are at a heightened risk of educational
underachievement. With the existence of additional risk factors such as hostile parenting, the
probability of reduced opportunities is inflated considerably.
This project reduces the vulnerability of ADHD sufferers by providing a two storey service. On the
ground floor, services such as SureStart, schools and Connexions aim to identify and assist in the
early diagnosis of ADHD. Thus, through DDAP, they place individual sufferers and their families
into a co-ordinated multi agency pathway of care. Should this initial level of service fail to prevent
young people having reduced risk, thereby entering into the justice system, the participating
agencies such as the Youth Offending Team, special education needs and the police offer another
opportunity for the individuals negative trajectory to be re-aligned.
Under the leadership of Lancashire Constabulary, DDAP has three main focal goals
all of which are seen as consequences of more young people achieving their potential
1. reducing crime and substance misuse
2. reducing anti social behaviour (ASB)
3. reducing road traffic casualties
1. reducing crime and substance misuse
Returning to the crime based agenda, the failings of the neuro-pathways within the ADHD
brain are cited as the causes of the behavioural traits mentioned above. Treatment with
prescribed medication, such as methylphenidate, for instance Ritalin, increases the
effectiveness of those pathways and so reduces the negative behavioural manifestations
that give rise to so much concern. Recent research has identified that sufferers can ‘selfWasted
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medicate’ through the use of illegal drugs, such as cocaine and heroin, both of which have
a similar effect on the brain to methylphenidate.
Therefore, within the rationale for DDAP, the reduction of substance misuse, through
diagnosis and appropriate medication is a goal that could directly lead to greater
achievement and less crime.
2. reducing anti social behaviour
Anti-social behaviour is a frequent matter for discussion within observers of ADHD and
its associated co-morbidities. Typical responses to young people who cause civil
disruption is through anti-social behaviour contract (ABCs), interventions such as positive
activities, anti-social behaviour orders (ASBOs) and where already within the YOT
clientele, reparation orders and detention training orders (DTOs). DDAP aims to ensure
that such contracts and legal undertakings are made ADHD tolerant, thus increasing the
probability of successful completion.
3. reducing road casualties
When the behavioural characteristics of ADHD are discussed in detail, i.e. inattentiveness,
an inability to concentrate for long periods and a prevalence to act on impulse, the links to
road casualties become clearer. Published research outlines how young men with
untreated ADHD are four times more likely to have a road collision2, and youngsters with
ADHD in Germany were found to be 9 times more likely to suffer an accident on the
roads as a pedestrian3. DDAP is embarking on education programmes for the ADHD road
user and is seeking a greater level of awareness amongst parents, carers and professionals
within the field of driving.
ADHD and courts youth offending teams and prisons
Studies claim that a minimum of 5% of the population have ADHD yet the Institute of Psychiatry
indicate that 25% of a sample group of ADHD sufferers had been to prison4. Her Majesty’s
Inspectors of Prisons stated in 1997 that 50% of young people on remand in the UK suffer a mental
health disorder and 30% of those sentenced also have a mental health disorder5.
A focal area of the project is an improvement in the services provided to offenders, pre-offenders
(through the local YISP) and for those incarcerated at Lancaster Farms (YOI). Where appropriate,
training will be given to CPS and the court services regarding mental health and ADHD to ensure
that interventions and sentencing decisions are made in a manner that supports the offender’s
mental health and gives every chance of effective rehabilitation.
Within the YOI the level of psychiatric service is regarded by the prison service to be inadequate.
DDAP will draw on contacts and the emerging influence to ensure that a more effective provision is
an outcome of this project.
Overall
Nothing matters more to families that the health, welfare and future success of their children. Our
future depends on the fulfilment of dreams, hopes and potential of our children being realised.
2 Barkley RA. et al. Paediatrics 1993; 92: 212–218
3 Federal Agency for Occupational Health, Safety and Medicine, Germany. (2001)
4 Dr Susan Young, Speech to British Psychiatry Society, Annual Conference, March 2001
5 Young Prisoners ISBN 1-85893-998-4
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DDAP members have a system that is reasonable and likely to work, because it is a model based
upon good practices and solid foundations, such as robust academic research, considerable
knowledge amongst participating agencies and the emerging, and changing, political agenda.
Further requirements of DDAP exist, when provided these will ensure that the project maintains
effective and complete solutions. Those requirements are: -
· The provision of a jointly funded ‘conductor’ to orchestrate activity to maximise effect across
participating agencies, such a professional would be an educationalist or specialist nurse
· Re-alignment of corporate decision making, especially co-coordinated long term funding, to
ensure the efficacy matters of dealing with ‘special measures’ are understood and moved away
from the current ‘too much – too late’ scenario
· Higher levels of investment in recruitment and training of professionals such as teachers, health
workers, police officers, and youth workers to overcome the skills deficits that this work has
highlighted and addressed within its locality
In conclusion, agencies and their staff need to work in close alliance to orchestrate the most
effective solutions, in particular, as seen in DDAP, professionals and carers should be in a position
to answer three fundamental questions: -
What does ADHD look like?
What do I need to do?
Who else do I need to assist me?
DDAP is establishing itself as a tested model to achieve the framework goals. As a pilot project
DDAP needs to prove the value of the systems and processes within its framework. In doing so this
project will present prima facie evidence that justifies re-alignment of budgets and services within
existing provisions of social, and welfare care.
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