Diagnostic difficulties

Being a teenager is trying at the best of times. But young people
with learning difficulties can face a tougher time. They may be
bullied, face problems at school, and are often isolated from their
peers. For some this can lead to a mental health problem.

A new report from the Foundation for People with Learning
Disabilities paints a stark picture of what life is like for people
aged 13 to 25 with learning difficulties and mental health
problems. Count Us In says that young people with learning
difficulties are twice as likely to develop a mental health problem
as other people their
age.¹ In fact, up to
40 per cent of young people with learning difficulties also
experience mental health problems.

Perhaps more worryingly, the report – which is the result of a
year-long inquiry into the mental health needs of this group – says
these problems often go unnoticed and untreated by the very
services designed to help this client group. It says: “The inquiry
listened to widespread concerns about how the emotional well-being
and mental good health of young people with learning disabilities
were being overlooked or even ignored.”

So why are young people with learning difficulties more at risk
from developing mental health problems than their peers? Does
having a learning difficulty hinder the diagnosis of a mental
health problem? And what sorts of services are available for this
client group?

Hazel Morgan is head of the Foundation for People with Learning
Disabilities, which is part of the Mental Health Foundation. She
says adolescence is a particularly difficult time for young people
with learning difficulties because of the potential for isolation
and loneliness. “Other young people are looking forward to going to
college or starting a career and these things are far more
difficult to achieve for young people with learning
difficulties.”

Alan Higgins is clinical nurse manager for the learning
difficulties service at the Camden and Islington Social Care and
Mental Health Trust. He says the triggers normally associated with
mental health problems are exacerbated for people with learning
difficulties. “They have limited understanding of subtle social
codes,” he says. “Sometimes their learning difficulty isn’t that
apparent, so their peer group and the public don’t know about it.
This all adds to the pressure on them.”

He adds that overprotective parents and care staff can also limit
how some young people with learning difficulties mature. “The
consequence of this is that they don’t develop adequate coping
responses to stress,” Higgins says.

But learning difficulties can also act as a barrier to having a
mental health problem correctly diagnosed, argues Morgan. “Health
professionals see the learning difficulty first and the mental
health problem second,” she says. “They attribute behaviour that
might indicate distress to a person’s learning difficulty.”

Dinah Morley is deputy director of youth mental health campaigning
charity YoungMinds. She says it is common for children and young
people with learning difficulties to have a dual diagnosis and for
professionals to incorrectly see the mental health problem as a
manifestation of the learning difficulty.

Higgins agrees: “A person can appear to present odd or challenging
behaviour and professionals may assume it’s part of their learning
difficulty and not a response to hallucinations or other symptoms
of a psychiatric condition.”

Individuals with learning difficulties themselves might also have
trouble identifying when their mental health deteriorates, he says.
“A person with a learning difficulty may have problems expressing
what is happening to them and describing the symptoms of a mental
health problem.” The more severe the learning difficulty, he adds,
the harder it is for the person to describe the key symptoms which
would aid diagnosis.

Once a young person had been diagnosed with a mental health problem
they are usually referred to a child and adolescent mental health
service by their GP. Unfortunately, Morley says, in the case of
children with learning difficulties the service may not have the
necessary expertise. “CAMHS need to have someone who has specialist
knowledge of these children and what is going on with them, as well
as their mental health problem.”

Parents interviewed for the foundation’s inquiry said it took a
long time for professionals to recognise their child’s mental
health problem and for an appropriate support service to be found
for them. Morgan says this is not unusual: “Only young people with
mild learning difficulties get access to mainstream mental health
services more immediately. Those with severe learning difficulties
get referred back to learning difficulty services.”

Michelle Chinery has a learning difficulty and is co-chairperson of
the national learning disability task force, created by the
government after the publication of its Valuing People white paper
last year.²

She says she experienced poor mental health when she was younger
after becoming depressed when living in a residential home. “I
wasn’t happy with where I was living and I protested by staying out
all the time,” she says.

The staff at the home wanted to prescribe her medication but she
was unwilling to take any. Fortunately the psychiatrist she saw
agreed that drugs weren’t the answer to Chinery’s problem. She says
when she moved into a different home her mental health improved and
she now feels happier.

Although Chinery was able to take a stand against medication, she
is concerned other young people with learning difficulties who
develop mental health problems are not able to. “People get forced
to take drugs because residential home staff get the psychiatrists
to recommend it,” she says. “They don’t always need to take them
but are given them because they’ve got a learning
difficulty.”

Clearly, there is room for improvement in the work that some social
care professionals do with young people with learning difficulties
who also have mental health problems.

Chinery says more training in mainstream mental health services
would help “because they are not knowledgeable about how to work
with people with learning difficulties”. She also calls for
psychiatrists and hospital staff to have better awareness training
on the subject.

She supports increasing mental health advocacy so people with
learning difficulties can speak up for themselves about their
problems. “Information should be made accessible for people with
learning difficulties about how they can access mental health
services,” she says.

Morley also backs increased training for the sector and says anyone
working with children should have awareness training on mental
health issues. She says: “This group of children are especially
vulnerable and they deserve better.”

One of the simplest ways to improve the way social care staff work
with children and young people with learning difficulties is by
respecting the relationships they have developed, Morgan says.
“Friendships are often overlooked by professionals and there is a
lack of support to help young people with learning disabilities
sustain them.”

Higgins acknowledges that Camden and Islington Social Care and
Mental Health Trust is in the unique position of targeting the
mental health needs of people with learning difficulties. He says
the service developed in response to local demand and is successful
because it works across both health and social services.

He says it is vital for other learning difficulties and mental
health services to see a young person with a learning difficulty
and a mental health problem as a whole person. He warns: “If they
don’t the individual won’t get a good quality service because it
will be fragmented, pulling in different directions and duplicating
work.”

1 Count Us In, The Foundation for People with Learning
Disabilities, 2002, from 020 7802 0312

2 Department of Health, Valuing People: A New Strategy for Learning
Disabilities for the 21st Century, DoH, 2001