Charlotte
writes the excellent and highly regarded
Purple Persuasion blog, about her
experiences of living with bipolar affective disorder. A few days ago she
tweeted: “Working on a post about what identity as "a service user"
means to me and how it can set me apart from non-SUs. What are your thoughts?”
I thought about it. It made me think about the broad concept
of “service user” from a professional “service provider” perspective, but it
also made me think about it from a personal perspective.
So I replied: “Mental or physical health -- we're all
service users in one way or another. Just made appt to see practice nurse --
I'm an SU.”
Charlotte
responded: “If you can't see how being a MH SU is fundamentally different, then
you really need to read my article!”
I’ve read her
post. It is an articulate analysis of her largely
negative experiences of being a mental health service user. She writes
forcefully about the “thousand little indignities” of being a service user,
which include the power differentials between professionals and service users, the
side effects of medication, the powerlessness to control a severe mental illness,
the undoubted stigma which still accompanies a mental health diagnosis, and
insensitive or incompetent professionals.
I have no argument with what she says in her post; as a
mental health professional I am very aware of the indignities she writes about,
and although I have always striven to minimise the negatives of mental illness
in the people I have worked with over the years, I am sure that there have been
times when I may have contributed to them.
The post concludes that she reserves the right “not to be
judged or advised by those who have never seen the trenches”. Having only
experienced “the thousand little indignities” of mental illness from the
outside, as a professional, I am certainly not going to try to judge or advise.
However, I think that Charlotte misunderstood the point I
was making in my tweet in response to her comments relating to how the
experience of being a service user can set someone apart from those who are not
service users.
As it is not possible to argue my case in the 140 characters
permitted by Twitter, I am going to try to respond here.
The point I was trying to make in my 140 characters relates
to the overall definition of “service user”, and the varying experiences of
being a “service user”. Charlotte herself agrees that “not all service users
have the same experience”, although she is referring only to mental health
service users.
I would certainly contend that someone self referring to a
Wellbeing Service for psychological therapy for a mild mental health problem is
likely to have a different perspective, and experience, from someone who has
been forcibly detained under the Mental Health Act and has been given powerful
psychotropic medication.
There are inevitably going to be as many experiences of
being a user of services as there are service users. But while I agree that
some of the “indignities” of being a mental health service user are unique to
mental health, there are also many which are shared by the users of social
services and physical health services. Equally, their experiences can be easily
as negative (as well as positive) as those of mental health service users.
Several years ago I had a routine eye test, and the optician
advised me to have a check up with my GP as he had detected a slight bleed in my
eye, which may or may not indicate a more serious physical health condition.
Not unduly concerned, I saw my GP the following day. She
took my blood pressure, and found it to be frighteningly high (it certainly
terrified me). She tested my blood glucose levels, arranged for the nurse to
give me an ECG, and then bluntly and, I thought, rather triumphantly, gave me
the diagnosis that I had hypertension and type II diabetes.
I went into that consultation believing myself to be a
reasonably healthy individual who never needed to take medication, and left
with the knowledge that I had two serious, chronic health conditions which
sooner or later could seriously affect my ability to lead a normal life, and
would be likely, in time, to kill me.
I had something of an adjustment reaction. I went through a
period of mild panic. Apart from being given some leaflets, which I found more
alarming than reassuring, and a prescription for a range of medication, I was
left pretty much to it.
I was suddenly on the other side of the fence, being a
service user rather than a service giver. I was suddenly at the mercy of health
professionals to whom I was just another case of a middle aged man with middle
aged ailments. I felt disempowered. I didn’t like it very much.
Now, I am not trying to compete in any way with Charlotte,
and I am not trying to compare my experience with hers. As a service user, I am
probably on the same level as a self referrer to the Wellbeing Service.
But there is a spectrum of experience, and those with
serious physical health issues can easily have as difficult a time as those
with serious mental illness.
If you are suddenly diagnosed with cancer, it is easy for
doctors and other health professionals to “take over” your body, dictating what
invasive, dangerous and hazardous treatments you should have. They may be
insensitive to your emotional needs, fail to explain things adequately to you,
and treat you as if your entire identity is suddenly subsumed into that of the
disease you have.
They may stop seeing you as a human being at all, and treat
you as nothing more than an interesting “case”. You may be admitted to hospital
with little real choice in the matter, and then receive terrifying treatments
of doubtful effectiveness and with side effects that may seem worse than the
condition itself. And on top of it all, you may develop a severe depressive
illness which is not acknowledged or treated as it’s “to be expected”.
A parent accused of physically abusing their child may
suddenly find themselves having no control over their family or their own life.
They may be subjected to child protection case conferences, attending meetings
in which large numbers of intimidating professionals are making decisions which
could have lifelong consequences for themselves and their children. They may be
treated as a criminal, and become marginalised or even excluded from decisions
regarding their children.
So I suppose my argument is really that it is not
necessarily relevant to compare different types of service users, whether
mental health, physical health or social care, and to assume that one type is going
to have a better, or worse, experience.
But we will all, in one way or another, and at some time or
another, become service users. That’s why it’s important for all professionals
to understand the full implications of that, and at all times to think “how
would I like it if this happened to me?”
