Monday, 6 October 2014

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?”


  1. not sure what happened to my first comment so trying again. both this & bipilar bligger have valid but different views. both very interesting. but i feel there was no need for the above rude comments. i hope you would not talk to people face to face like this. is a necessary.

  2. oops meant 'unnecessary' in above. phone keyboard useless

  3. I have to agree with Anonymous above. Both Charlotte and The Masked AMHP are disagreeing with each other in a civil and thoughtful way, and both are making valid points.

    Sorry Gordon, but bringing personalised abuse into it is way out of line. It's called expressing an opinion, which both bloggers are more than entitled to do.

  4. Sorry, but I've had to delete some comments because they were abusive about others. You can abuse me all you like on my blog, but leave others out.

  5. Hello.

    I don't believe my comments were abusive and would like to know what I said that was abusive. I disagree with Charlotte and find her rude, what's wrong with that? I also said I wanted to marry Gordon which was, of course, me joking!

    I also don't think Gordon was abusive, he was just expressing his opinion. Where is the line drawn between disagreement and abuse? Nowadays it seems whenever people disagree with someone they're suddenly deemed 'abusive'.


    1. I believe the line is drawn between when someone offers a counter-argument to someone else's point, or when they start making personalised comments about the individual.

      Having read Gordon's comment, I fully agree with the Masked AMHP that it was abusive rather than disagreement, and he was quite right to delete it.

      If some people are trying to use MAMHP's blog to pursue a feud, I really don't blame him for not wanting any part in it. I wouldn't either.

    2. To some extent I agree with you Phil, some of what Gordon said but a bit close to the line though I admit, my sense of humour being what it is, I laughed. I could sense it came from a place of great frustration for the reasons he stated with which I and others could relate.

      I have to take umbrage with your alluding to a "feud" as you've hinted at it elsewhere too. There is no feud but there are people, like Gordon who've been on the receiving end of Ms Walker's inability to debate even though she invites it by tweeting and blogging publicly. This was subtly touched upon in this piece by MAMPH I felt ,as did others so it seemed like as good a place as any to have that debate given that Ms Walker refuses to allow that debate elsewhere.

      People can't disagree with her as she won't allow it, this blog piece allowed a place where perhaps people could freely disagree with what she'd said (in her SU identity post) without fear of abuse or attacks from her or her followers.

      I accept that ultimately the MAMPH is free to publish and not publish in line with his own guidelines and I think he was correct to delete these comments (though I'd like to see them again, re-worded) but we're all adults on the internet. More than one person disagreeing with an individual is not a "feud", nobody needs protected here.

    3. I absolutely agree with you Ada. Gordon was a bit rude, and rather funny, but he also made good points. As did you.

      This 'feud' being spoken about below is as invented by BB as it is by PhilDore. There's no feud but there are those of us out there who sees someone pushing themselves into the public light and speaking for us. Except what they are saying is nothing beyond their own agency. Which is FINE except make that clear. If you want to speak for us when you go on BBC Breakfast, challenge what is going on right now in terms of new policies and the effects of old ones by this Gvt.

      However, to try and discuss this with BB leads to being patronised, spoken rudely to (no matter how polite you are to her) and all round rudeness. That's if she doesn't evade you or tell you she's not well and will need to return to the topic at later date. Which never happens.

      I'm not in the world of well known mentals, which means I don't need to have my views challenged if I don't want (always happy to hear an opposing view tbh as you never stop learning) but if I thrust myself into Celebrity Mental Land it would be remiss of me to shut down and shout down everyone else who doesn't fit into my mould.

      There's no feud, there is utter frustration though.

    4. This will be the last comment I'll be making on this discussion thread.

      I think it's blatantly obvious that there is a feud going on somewhere. I've seen enough online arguments to spot at 20 paces when people are pursuing a vendetta. Not that those involved are being particularly subtle.

      Whatevs. If there's people in the blogosphere who are having some beef with each other, I don't think that's anything that needs my opinions, or even something I particularly care about. Not when there's a new season of Twin Peaks, which sounds far more interesting.

      Over and out.

    5. Someone imagining a feud on one end doesn't go ahead and make it true. It just makes them a bit self involved.

      People can not like someone, can challenge what the other person says and still not be having this imaginary, one sided feud.

  6. Maybe abusive is too strong a word, the language used may have been a bit abrupt for some "readers" liking, but bearing in mind that BB is more often than not quite keen on debates.......well as long as it's going her way.. It seems to me more often than not thatif your "face" fits in the blogging world, specifically in regards to MH the you are wrapped in cotton wool and pussy footed around

  7. I can identify with your point MAMHP.
    Recently my father was admitted due to cancer related complications. I witnessed two different specialties using him simultaneously as a Guinnea pig and some form of competition to discover what was wrong, all the time making blasé promises that never came to pass and failing to provide him with meaningful choices or information, whilst he received the most shockingly bad care I think I've ever known.
    It certainly wouldn't have been permitted when I worked in general nursing (some time ago) and would be inconceivable in the psychiatric institutions I admit to now, even if I don't rate them that highly.
    It made me reevaluate the care MH services provide and wonder if the goal of parity with physical health services which seems to be the current rallying cry is actually misjudged.
    Disempowerment, lack of respect for dignity and poor treatment are definitely not solely the domain of mental health/ LD services.