More on user involvement at
www.drinkanddrugsnews.com
and holding service providers to account.
The reasons for this failing range from
the inclusive, democratic nature of the
service user involvement model failing to
provide the necessary level of expertise in
its representatives; through to the
reluctance of professional service providers
to listen to amateur service users and the
stigma that can be found in professional
service providers’ reluctance to listen to a
bunch of drug users.
Service user involvement in other areas
of health and social care also suffers from
this, although not to the same degree as
substance misuse user groups. It seems
that a service provider’s approach to it is
directly proportionate to their preconcep -
tions of their service users in general –
which can be just as negative as those
found in the general public. The blame for
using such a flawed model can be spread
around, but the bottom line is that service
user involvement as a model fails to have
an impact on treatment policy.
*****
W
‘I called several
leading lights
from service user
involve ment for
research, and
one question I
asked them all
was to name
one national
policy change
that has been
driven solely by
service users.
I’m still waiting
for someone to
come up with
one....’
hile writing this
article I called several
leading lights from
service user
involvement for
research, and one question I asked them
all was to name one national policy
change that has been driven solely by
service users. I’m still waiting for
someone to come up with one – a silence
that speaks volumes.
Substance misuse services are
approaching major change – partly the
result of changes to patterns of drug use,
partly due to significant funding cuts –
and it’s essential drug users engage with
civil servants, politicians and treatment
providers to ensure ‘best practice’
maximises resources and is as beneficial to drug users as possible. Service user
involvement has repeatedly failed to provide a means of meaningful policy
engagement and there’s no reason to believe this will change in the future.
Consequently it’s imperative for all parties to find an alternative model.
This search for a functioning model doesn’t mean it’s the end of the road for
service user engagement. Rather, what’s needed is an acceptance of the model’s
limitations and a reappraisal of how to maximise its potential. Its sole aim needs to
become a therapeutic tool for users on a local level, where its organic development
can be supported by service providers. A meaningful service user group is always
organic because it requires at least one service user, preferably with links to the
local community, to manage and lead it. They cannot be artificially created or
manufactured, but should rather be appreciated and supported whenever and
wherever they flower.
I’ve been around substance misuse treatment long enough to see the pendulum
swing back and forth, and in time the pendulum will swing back to favouring
patient participation again. When it does, let’s be realistic regarding service user
involvement’s role. What it does well should be supported – and for what it can’t
do, we need to find another model.
Nick Goldstein is a service user
www.drinkanddrugsnews.com
Nothing about us...
In January 2006, Alan Joyce
told DDN why effective service
user involvement was so vital.
This extract shows that his
words are as relevant today as
they were 12 years ago
here is overt hostility on the part of some practitioners to the
very idea of ‘treating’ drug users, exemplified in the words of one
GP to a patient for whom I advocated: ‘I am not here to provide
you with free drugs. Come back when you are clean.’ Then there
is the intimidating surgery receptionist who discusses the
patient’s medical history or drug problem in front of other
patients in the waiting room. The user feels so unwelcome at the practice
that they leave and take their problem elsewhere.
If the user makes it beyond the surgery door to find a doctor who will
treat them, they will still face continuing problems. One chronic problem is
under prescribing – or more correctly, sub-therapeutic dosing. Many GPs
prescribe methadone at levels way below government guidelines, refusing to
consider a realistic dose. Understandably patients continue using on top, or
relapse, and treatment is routinely associated with poor outcomes.
Another common problem is a punitive response to a user exhibiting
symptoms of their condition. Opiate use is described as a chronic medical
condition characterised by relapse. In no other branch of medical treatment
would a patient exhibiting a classic symptom of their condition find their
treatment withdrawn on ‘punitive’ grounds.
Overly rigid prescribing and dispensing practice can cause further
problems. While it is understandable that supervised consumption may often
be a necessary and appropriate measure to be taken when initiating,
prescribing and stabilising the patient, it can all too often be applied in a
dogmatic and inflexible manner that makes it very difficult for certain patients
to remain in treatment.
Another common problem is a refusal by some GPs providing treatment to
follow the science or evidence base – or even current guidelines. The right to
exercise ‘independent clinical judgement’ is deployed as a fig leaf to cover what
is, at best, down to poor training and ignorance – or at worst the doctor’s
imposition of their own personal morality and belief system on the patient.
In some medical practitioners, this can give rise to a fixation on
abstinence-based recovery. While for some users cessation of drug use is a
laudable and achievable goal, for many others it is not. Other treatment
options that focus on harm reduction and maintenance are denied to such
patients. Sometimes this can have a drastic impact on treatment provision in
a whole region, a nd we can identify such ‘problem’ areas by the number and
type of cases we receive. Sadly, one can also identify such areas by high
overdose and drug related mortality rates.
By listening to the patient’s voice, both drug user and treatment provider
will cease to find themselves in an enforced embrace characterised by mutual
misunderstanding, incomprehension, distrust and antagonism, and become
equals in a therapeutic alliance.
T
Alan Joyce was senior advocate of the Alliance. He died in 2013 but his work
is remembered by many. His article, Why do we need user advocates? was
published in DDN, 16 January 2006, page 12.
June 2018 | drinkanddrugsnews | 9