Is it Useful to Differentiate Between Different Types of Service User?

Charlotte Walker (@BipolarBlogger) and I appear to have had a minor disagreement.

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?”