In sight, in mind

Graham Hopkins reports on a project that works with young people
aged 16-25 with first episode psychosis.

About 3 per cent of people experience a psychotic episode, which
makes it more common than diabetes (see below). Chances are a first
experience will happen to young people aged between 16 and 25. The
confusion and distress about what is happening to them could even
prove fatal. Between 10 and 15 per cent of people with psychosis
commit suicide, two-thirds of them within five years of the first
episode. 

Delays in engaging with services, averaging between one and two
years, almost inevitably increase the risk of harm and can result
in prolonged hospitalisation and thus higher costs. Delays can also
contribute to unemployment, low self-esteem and loss of
accommodation which, in turn, lead to a life spent in and around
the revolving door of repeated relapse. 

And yet the prospects of short-term recovery are very good. For
example, with early interventions and sustained treatment, more
than 80 per cent of individuals overcome the symptoms from their
first episode of psychosis within six months.  

The NHS Plan for Mental Health, published two years
ago, recognises the need for the development of early intervention
services. And one such project, based in Plymouth, has been hailed
as a model service for young people with severe mental health
problems. 

Insight – a partnership between the voluntary sector and
Plymouth primary care trust – provides its service from the
perspective of a young people’s service rather than a mental health
service. One of its strengths is that it is part of the Youth
Enquiry Service (YES), an established “street-level” drop-in
voluntary organisation, which offers a range of youth services for
13-25-year-olds. 

Based in the city centre, YES, with its welcoming (“youth
friendly”) mix of decoration, music and bustle, is well known and
well respected. YES is no traditional shabby or intimidating mental
health service setting. Its services include a sexual health clinic
and drop-in, counselling, accommodation and benefits advice,
mentoring, child and youth advocacy, personal development
programmes, Sure Start Plus and Insight. 

After local research in 1999 that showed 16-25-year-olds were
under-represented in mental health services, it was decided to set
up a service focused on the young person and not driven by a
medical model.   “It was important to get started on the right
footing,” says health services manager Ruth Marriott. “I wanted a
balance in the team that reflected mental health expertise and
youth work expertise. We wanted a place that young people would
feel okay to come to and access a service.” 

Opened for business in July 2000, the newly-assembled Insight
team had not only young people to convince of their worth but also
other staff at YES. Care coordinator Sue Devonshire says: “They
didn’t know what to expect – they thought we’d all be nurses and
the building would be full of people who were mentally very
unwell.” But the staff soon realised that many people using Insight
were already known to YES. 

Word-of-mouth has been a crucial element in the success of
Insight. “There’s an unwritten understanding with people that if
they come here it’s confidential, it’s safe space – and that’s what
gets translated back out,” says Marriott.  

It’s easy to spot the cohesion within YES. “Young people walk in
and out and get to know people, whether they use Insight or any
other part of the service, and they get chatting about what’s going
on for them,” adds Marriott. “They talk about their medication and
so on – it’s seen as simply what’s going on for them, it’s no big
deal, it’s just part of who they are.”  

Care coordinator Linda Spencer agrees: “They haven’t had
negative experiences from other people in the building. They will
talk openly about the fact that they’re using Insight.” Indeed, to
June 2002, nine young people have referred themselves. 

The team aims to strike up strong relationships and engage with
young people on their terms, helping them to understand, cope with
and control their changing mental health experiences, looking to
raise individual self-esteem and personal growth.  

The targeting is working well. The average age of young people
accessing the service is 19, whereas nationally it’s 22. Up to June
2002, Insight has received 124 referrals – 48 for young people aged
under 18. Thirty young people make up the team’s current caseload.
This reflects the complexity of the cases and the team approach to
intensive, one-to-one work. Devonshire says: “They have become
time-consuming. Sometimes assessments take longer than expected.
What does it look like – having a first episode psychosis? It’s a
very unclear thing sometimes. And picking that out is
difficult.” 

Picking out outcomes for the young people using the service can
also be difficult. But the service is being evaluated through
research, partly-funded by Plymouth primary care trust and the
Sainsbury Centre for Mental Health. This will include user
satisfaction surveys for which Insight is training (and paying)
young people to be peer evaluators. The evaluation will be “like
trying to build up a little picture of life before Insight and the
impact that it’s had”, says researcher Christina Moore. “The most
interesting part of the project is to find out what young people
actually think. At the end of the day, that’s where we are going to
find out.” 

If Louise Footner, 18, Joe Broughton, 17, and Sandra Parsons,
16, (not their real names) are representative, Insight should have
few worries. “My keyworker is brilliant,” says Joe. “Nobody had any
time for me before. If I want anything, if I just need a chat, my
keyworker is always there. The people have time for you here.”  
Louise, happy because she has just secured her first flat with help
from Insight, agrees: “They’ve helped with a lot of things. I don’t
know where I’d be without them.”  

Sandra, equally happy as she has just been accepted on a college
course, says: “It’s really good to be involved and to be listened
to.” 

That young people feel part of the place is echoed by care
coordinator Martin Verrecchia: “Often they don’t even go to
reception – they just come in, walk down the corridor, knock on the
door and there they are.” Nonetheless, a number of people are also
visited outside the centre. 

Some people referred do not need input from Insight, but even
they are not turned away. “If we decide, after assessment, someone
isn’t appropriate for our team, we don’t just drop them,” says care
coordinator Gareth Hill. “We try to pass them on to people we think
are appropriate.” 

The team work approach also requires detailed work around
managing actual and potential blips or relapses. “I think it’s
wider than just relapse,” says Verrecchia, “because you look at the
onset. But by doing that process, by talking and clarifying, you’re
helping people think about how they might cope when they move on.
In my previous jobs I’ve never spent so much time with a young
person working out a relapse plan.”  

For Spencer, “one of the things about this is it gives young
people choices”. And, indeed, an additional choice has been added
from July. The Insight team, thanks to a mobile phone and flexible
working, now offers its clients a 24-hour service. But it’s worth
it, they say, because the young people value knowing someone can
always be there. Indeed, what value on Insight always being
there? 

Information pack available. Call Ruth Marriott on (01752) 206
626; or e-mail: yes@plymouthdevon.fsnet.co.uk

Background

Scheme: Insight 

Location: Plymouth 

Staffing: Four care co-ordinators (two seconded staff, two
employed by YES); 0.5 accommodation welfare officer; 0.5
administrator; 0.2 clinical psychologist; 0.2 consultant
psychiatrist; 0.4 health service manager; 0.1 community
psychologist; a group worker/care coordinator post is to be
added.  

Inspiration: To provide services for an under-represented
group. 

Cost: £265,000 a year, for three years funded from Health
Action Zone, to be mainstream funded by the primary care trust from
next month.   

First Episode Psychosis

From the Greek psykhosis, originally meaning animation, psychosis
describes conditions that affect the mind, resulting in a loss of
contact with reality, in the form of delusions (known as “false
beliefs”) or hallucinations. Other symptoms include confused
thinking, changed feelings and changed behaviours. When someone
becomes ill in this way it is called a “psychotic episode”.

“First episode psychosis” simply refers to the first time someone
experiences psychotic symptoms or a psychotic episode. Such
unfamiliar and disturbing symptoms can leave the person confused
and distressed. People do recover from first episode psychosis and
many never experience another episode.