Meeting-The-Challenge-Making-a-Difference-Practitioner-Guide

“How can I represent
others’ views when
I have no way to
access other service
users, or only
become aware of the
issues to be
discussed the day
before the meeting?”
Another approach to
involvement is to involve
those with specific experience
and skills and recognize that
this is valuable in itself.
Sometimes people working to
this model are known as
experts by experience. Experts
by Experience are valued in
their own right and asked to
bring their own perspective to
the table rather than
representing others.
There are also independent
service user led organizations
which work collaboratively
with those providing services
in service development,
evaluation, training and so on.
In thinking about involvement
it is important to ask yourself
what you hope to gain, and
to use this to inform what
approach you take.
What is unique and different in respect
to service user involvement and
personality disorder?
As highlighted in other chapters, many service users with a diagnosis
of personality disorder have complex histories of trauma, abuse,
neglect or loss. These histories often go hand in hand with years
of chronic invalidation, rejection and simply not having their
experiences or opinions heard or respected. Some service users
with personality disorder have also experienced turmoil or
difficulties in their relationships with others, so their interactions
with mental health practitioners can often be fraught and
problematic. This has often led to individuals being described as
‘difficult to work with’,‘attention seeking’,‘manipulative’ or
‘untreatable’ and frequently excluded from services.
Due to these kind of experiences, many service users may mistrust
authority and service providers. For some who do speak up, their
feedback or opinions are often minimized or dismissed outright
because of stigmatising or discriminatory views about personality
disorder; this serves to perpetuate feelings of invalidation and
mistrust on both sides.
“When I gave what I thought to be considered and
thoughtful feedback about the service I was
receiving, it was immediately dismissed because
the common opinion amongst the service was that
all that service users with personality disorder do,
is complain… One member of staff even said to
me; ‘well you would say that, that’s because you
have personality disorder’, Another member of
staff said ‘it’s part of your pathology’ as if my
internal difficulties were the reason the service
was poor and not because of the service or the
trust’s failings.”
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