The Mental Health System: Divide and Rule

So, imagine this:

You have an illness. It has a name. Your right leg doesn’t work properly. You can use it- just about. You get around on crutches. You’ve had this problem for a while; you’ll have it for years to come. You have a doctor and a therapist who help you with this illness. You’ve spent years building your relationship with them. You trust them. You’ve told them all the deep, dirty secrets about the pain and suffering this illness has caused you. It’s embarrassing. It’s the kind of stuff you can only tell someone you’ve come to trust after years of them caring for you.

It’s some time later. Now your left leg doesn’t work. The doctor notices this. “Oh, I see your left leg doesn’t work now”, he astutely notes. He nods. He glances at the therapist, concern flashing in his eyes.

“What does that mean, doctor?” you ask. You’ll probably need a wheelchair, you know that. But it’s okay, because you also know that your trusted doctor and therapist will be there to help you through it.

“I’m sorry,” the doctor says, shaking his head. “You’ll have to be treated by the Left Leg team now”. He waves his hand vaguely across the room. You twist your body and turn. From the open door, you see another team- the Left Leg team. It is populated by people you’ve never met.

How do you feel?

“Why on earth is there a left leg team if it is still my legs that are damaged?” you ask incredulously.

Why indeed?

Mental health care is now organised into teams working on separate diagnosis. I didn’t realise this until I started working in mental health myself (if being a mental health nursing student is classed as, “working”. We do 37.5 hours a week for £1.25 an hour, so maybe).

Mental health is clustered using a HONOS scale (Health of the Nation Outcomes Scale). It’s part of the Payment by Results policy.

Using this tool, people are, “clustered” into groups. What group you end up in depends on your symptoms and functioning. The clustering based on a subjective questionnaire. What you enter then spits out a cluster. This is automated but I should mention that it can be manually overriden. At the point of completing it, you usually need to give a diagnosis. This can be after the first meeting with someone.

The diagnosis- the label, if you will- is now the most important part of mental health care as an adult.

Different teams treat different illnesses. Two we’ll ocus on are:

MAP: Mood, anxiety and personality disorders. That’s people with bipolar disorder (without noted psychosis- we’ll get to that later), depression, anxiety disorders (you have your somatoforms, your OCDs, your GADS, your acronyms) and your personality disorders (which, in secondary care, tends to be people with borderline personality disorder).

Psychosis: These are people with psychotic disorders- schizophrenia, namely.

This means that the whole, “holistic” care in mental health is a mirage. As you can see, in terms of the common mental illnesses, there are two main groups: MAP and psychosis. Instead of treating people as having a range of these symptoms, difficulties, challenges and preferences and referring them to the right people, you are now classed by diagnosis. Diagnosis, is partly subjective. People can have different diagnoses depending on who they see, what their speciality is and how they present at the time. But as soon as someone is referred, they are HONOSed and diagnosed, and grouped accordingly.

There are troubling ramifications of this. One is for the patient, particularly the patient already in services. As an example:

You are a patient who has borderline personality disorder and OCD. Anxiety and personality- You are assigned to the MAP team. In BPD, building up therapeutic relationships may be difficult. It might take a long time. It might take trial and error. It needs to be consistent and boundaried. And, like with any person- who has BPD or not- it depends largely on the dynamics between two people. Sometimes you just don’t get on with people. This is human.

But if you find someone you get on with- that’s great. And particularly in mental health care, where you often have to discuss painful, embarrassing or bizarre topics with someone.

But you begin developing symptoms of schizophrenia. You have an episode of true psychosis. What happens then is that becomes your working diagnosis. You are then assigned to the psychosis team. You no longer have the same doctor or same care co-ordinator you have spent years building a relationship with. But you still have BPD and OCD, too. What happens to those problems?

Clare Allen touches upon this in the Guardian, in a understatedly heartbreaking way.

It works the other way. You have an illness that has been treated as bipolar disorder. You have psychosis without mood symptoms, it changes to schizoaffective disorder. Despite the trust you’ve built, despite your relationship, despite the fact that they are treated in almost exactly the same way, you will moved to another team of people.

This is hardly, “holistic” and, although it’s in its early stages, I’m also willing to bet my life on it being damaging and causing people to disengage with services.

In my own experience, my diagnosis have fallen within MAP. I have a diagnosis bipolar disorder and I had a diagnosis of BPD for a while. I had 2 care co-ordinators, whom were both great. But it took me a long time to build up that relationship. Part of the reason I airily dismissed CMHT involvement when I moved borough (aside from the fact I’d been referred because my GP wanted to be on the safe side started Lamictal, and because I am stable and don’t feel I need them) was because it is exhausting retelling your story, building that relationship. I didn’t want to do it again.

The second ramification is on the professionals. I’m doing my training as a nurse at the moment and one of the things I need to be able to do is give depots and physical care. There is not a lot of depot giving in MAP. Most patients aren’t on depots. A lot of the needs are social ones, rather than physical ones, which also blurs the lines between professions; particularly social workers and nurses. So nurses who have studied for years are being deskilled.

There is also the lack of variety. Not that patients aren’t different; they are. But dealing with the same symptoms, and being deprived of the challenge of dealing with something totally new, isn’t bolstering. Nobody- no doctor, nurse or therapist- I have spoken to about this is happy with it. But, as we know from the NHS Reforms, the government doesn’t give a flying feck how people working in the NHS feel.

To me, this is an extremely counterintuitive system. Healthcare is supposed to be increasingly, “holistic” and yet now there is pressure to diagnose people quickly, ticky box them and allocate them accordingly. The care they receive is not based upon their needs or preferences, but diagnosis, and when that changes, so does their care, despite what their needs or preferences might be. It also breaks up team who worked together; it clusters not only patients, but professionals.

Now, this is a very simplistic summation (from my somewhat inexperienced perspective). But I must ask:

What’s the point?

EDIT: Feel free to discuss the plus points in the comments! I know clustering has a use, as do care pathways. In terms of the specific grouping, though, I’m failing to see the upside.

I should also elaborate: I am “pro diagnosis”, if you can be such a thing. I think diagnosis are important in mental health; not just for the person who has mental health difficulties to have a name for something but for guiding treatment. What I don’t agree with is diagnosis being the be-all, end-all of treatment.

I’m also a BabyNurse (one who wants to be a therapist and looking into switching to social work) so do correct me on points.

59 Responses

  1. Interestingly autism, that recently put me in the nut house for a week doesn’t get a mention at all. That’s why we’re (and particularly women) diagnosed with BPD, depression, other PDs and schizophrenia.

    See, if their isn’t a hole you fit, they bang you into another one.

    There isn’t a hole for this Muppet to slither into. Nevertheless I think we should all find her the nearest fit, and reach for our hammers. She owes me £15,000, btw.

  2. I’ll go into more detail when I see you but, broad points aside, you’ve got some bits not quite right about how clustering *is supposed* to work…

    • The focus was meant to be on the MAP and psychosis but I can’t go into detail about that here. I know clustering works differently, in terms of how long/what type of intervention people will need.

      • I didn’t mean to suggest that you don’t. Just that I actually think that clustering CAN be useful if done right.

  3. Great post, please see TWIM where I’ve been speaking of this very subject! [DSM thread]

  4. I don’t believe clustering and diagnosis is helpful, I would favour Lucy Johnstones ‘formulation’ approach – problems, skills, needs, in plain english

    • I think diagnosis are helpful because in secondary care you will often need to use medication. Someone presenting with bipolar symptoms should not primarily be treated with antidepressants like someone with depression because it could harm them.

      • I would have to beg to differ Seaneen having met nurses from Scandinavian countries who found that benzodiazipines were just as effective short term as antipsychotics for psychosis and anxiety reduction [ditto the use of sleepers which psychiatrists will normally never give to anyone with a diagnosis of Bipolar]

        • Psychiatrists give Zopiclone to people with bipolar disorder; all they do is help people sleep.

          • I’ve seen plenty who can’t get it!

          • sleep can be the critical factor which tips the balance for some people

            • I know this from experience! I also know zopiclone doesn’t touch it sometimes.

              • fair enough, whatever it takes, but I have to question when I see people who get high once every two years for 48 hrs whether they really need medication all the time and not just in periods of crisis – they’re not allowed to try if they want to and I want them to have the choice

                • No, I agree with that. And it’s not the norm that people who don’t experience highs often are on medication all the time. Often people are given the choice to take medication, as needed. It was my choice with Quetiapine; I was told I could take it when I needed it. The issue was when I stopped taking it I became high, and I took it then to deal with that- and then when I stopped, the same thing happened, so I have needed to stick with it. But I take a lot less than I used to, because I have learned to self-manage. Namely, sleep!

                  • I see people who are not experiencing highs frequently who have been on long term medication, it is the norm in some areas, in some teams. Again taking meds as needed is variable, some psych’s will work with that, others will not.
                    There is the rebound psychosis argument – coming off too quickly results in drug withdrawal which looks like ‘relapse’ – but please don’t take that as me trying to persuade you to not take your medication – your word is good enough for me, but I’m just saying this is an issue others have experienced. Sounds like you’ve found the best combination for you, well done!

                    • No, I know about the rebound- the difficulty is in riding it out! If I had nothing to do, nothing important, I would just grit my teeth. As it stands (I tried to come off it recently), rebound or relapse, it will still affect me to the point of getting into trouble, so I end up having to go back on medication. It’s really really noticeable!

                      Medication is ultimately a person’s choice. Unless someone is in hospital (even then, unless they are on section), nobody can force them to take medication. If someone doesn’t want to take medication, they don’t have to. I know we’re told, “OH THIS IS FOREVER!” but it doesn’t have to be, if you can manage. A few 48 high periods are not that damaging, in the scheme of things.

                    • No medication isn’t always ultimately a person’s choice, I wish it was. People DO feel obliged or coerced without the MHA, for example to secure support. Plenty of people are medication compliant because they don’t want to lose their care support or support for other things i.e. travel card, benefits reviews. The pressure or persuasion can be subtle. Relatives and partners can also pressure people into remaining on medication when they don’t to be.
                      In hospital, if you’re told orally or by some other route – you swallow.
                      There is research where people are being PAID to take antipsychotics.
                      Well depends on what happens in those 48 hrs..

                    • Lie😛 It’s what I did!

                    • Exactly you had to lie!

              • A mate, a psychologist is thinking of putting everyone in cluster 9 [the blank one] to crash the system. I like that! Calling all mental health professionals – put all your service users into cluster 9!!

              • There’s going to be an Inquiry into ‘Schizophrenia’ Label launched shortly, an alternative to Robin Murray’s mental health charity supported ‘commission’, a desperate attempt to drum up more money for brain research.

                But take a look at this, it’s stunning:

                Alternatives to reliance on medication as the main intervention strategy in working with people experiencing Schizophrenia, in particular to the Western Lapland ‘open diaglogue’ approach has been developed and well evidenced over the last 30 years and practised as part of the Finnish public sector interventions.

                The evidence highlights that:

                1] It is possible to treat people with psychosis largely at home with an open dialogue approach.

                2] 30% were on low medication for limited periods of time;70% were not on medication.

                3] 85% recovered; 90% of them have not been on medication. Most of these people are in employment.

                4] open dialogue includes mainly the person and family members, but also where relevant others; providers from any mental health discipline, ready to enter a system based on the assumption that they do not have the solutions, but that the solutions can be found through the dialogue.

                Seikkula, J. et al (2006) Five year of first episode nonaffective psychosis in open dialogue approach: treament principles, follow up outcomes and two case studies. Psychotherapy rReview 16(2)214-228))
                and an interesting video produced by Daniel Meckler, a US psychotherapist (www.iraresoul.com).

          • are you thinking there is an underlying ‘chemical imbalance’?

  5. I hate hate hate bloody clustering. Time spent with absolutely no benefit to the service user annoyed me enough, let alone potentially being detrimental. Also – no real recognition that conditions fluctuate!

  6. There are minimal and no medication approaches to psychosis i.e. Soteria, hearing voices movement and MDF used to have a great self-management package. Psychiatry’s first line response is too easily medication first before anything else and then leave it at that.
    Pretty Like Drugs – agree!

  7. Wow. Thanks for sharing this, it’s good to know how it works from the other side.

  8. I’ve always wondered – diagnosis of psychosis or bipolar AND BPD – so with BPD differences in perception are supposed to be ‘pseudo’, yet differences in perception with psychosis/bipolar are supposed to be ‘real’, so how do psychiatrists tell the difference? Have they got some gadget they can scan people with which detects whether those differences are ‘real’ or not?, No they haven’t, and it doesn’t come down to duration neither because I’ve seen people with a diagnosis of psychosis/bipolar whose high or distress which could be viewed as acute psychosis have been most transient a la BPD. My point is diagnosis is utter tosh in determining people’s experiences and needs

    • In differences in perception, are you talking about “pseudopsychosis” as opposed to “real” psychosis? “Pseudo” tends to be the voices commanding someone to hurt themselves but are determined or experienced as coming from inside the head as opposed to the outside.

  9. Great post! We need more generalists in the system who have broad experience – right now there are too many experts with narrow interests. In my own case I could not find a female psychiatrist in my city to do a diagnostic review because they all specialised in disorders which I did not have.

  10. Exactly Seaneen, in psychosis the differences in perception are viewed as authentic, ‘real’, biochemical, whereas differences in perception within other diagnoses are not viewed as ‘real’. They are real to the person hearing them!
    Voice hearer’s of all diagnoses but especially Schizophrenia hear voices inside AND outside of their heads – check out Romme & Escher ‘Accepting Voices’, and ‘Making sense of voices’, and materials by the hearing voices network, There are no hard and fast rules on what voices say and from where and what that denotes.

    • No, I’m totally with you on that, whether voices are, “real” or not, they can be managed. My first ever foray into presenting about mental health problems was on the topic of, “Hearing Voices”, cultural differences etc, and the hearing voices network.

      • That’s great, but then you already know that voices are not set by diagnostic rules, people hear them inside and out and that does not in itself determine diagnosis. My rule of thumb is – believe what the person says to you [Tamasin Knight ‘Beyond Belief’ brilliant piece of work]

        • But there are differences in the types of voices. Someone who hears them in their head may have them flare up at certain times (such as under stress); someone with outside command/commentary voices has a different experience of them and will use different techniques to distract themselves. While I think Hearing Voices groups and therapeutic management of voices can help, I don’t think everyone’s experience is the same, and I do think there is a difference between pseudohallucination and hallucination in terms of how it’s experienced.

          • I would agree everyone’s experience is different and all voice hearers of any diagnosis can hear voices inside or outside of their heads under stress or a command voice and distraction has it’s limitations – have to engage with voices at some points.
            How do you think you are able to determine who is hearing/seeing ‘real’ hallucinations and ‘pseudohallucination’?
            How do you think the experiences are so different?

            • I can’t with confidence, if I’m honest!

              As I said, I am a Baby Nurse and a lot of my experience in mental health is things I have been through myself. I know from what I read, but I wouldn’t diagnose someone, I wouldn’t be confident at all in things like that.

              • That’s good, I would have been really worried if you said that you could! Think about it – we can’t really determine whether what you’ve been taught is ‘real’ or ‘unreal’, and maybe that’s not where it’s at, maybe to assume we could decide is harmful to the patient.
                Just imagine your tutor was walking up up to you each week and calling you a ‘cunt’ after a lecture – how would you feel?
                Imagine going to your course co-ordinator and saying, ‘can you help please, my tutor keeps calling me a cunt?’
                How would you feel if the reply was ‘I’m sorry that’s not real, you’re not hearing that, it’s in your imagination’.
                It’s devastating to be disbelieved – no matter what the diagnosis is. To have those experiences dismissed is crushing and I’ve seen that done to people who hear voices without a diagnoses of psychosis. It IS real to them, and to not believe those experiences is like telling someone who’s been abused that it never happened.
                You seem a really smart woman to me and I’m glad you’re doing nurse training and can use your experiences in your work – I just ask you to keep questioning!

                • Thank you! I enjoy being questioned!

                  This course has challenged a lot of my perceptions- my views are quite different now to how they were a few years ago, as a quite dogmatic service user. I’m glad I am undecided on lots of things- means I can keep an open mind!

  11. Immediate results in crisis yes – but longer term making sense..not so sure.
    Keep a little bit of that dogmatic service user!

    • In my case I think medication has had a big hand in helping me. I’ve never really had therapy except a brief couse of CBT. But I could attribute some of my recovery to medication- OR!- being a hyperviligant, self obsessed little fucker who manages herself well. But part of my self management is medication- I up or lower doses depending on how my mood is. But being able to self manage is why I can do that with confidence- to a degree. I haven’t been all that well lately but I understand why not, so manage.

      • That’s fair enough, I just wish you had been offered more in the talking dept as well, not necessarily a specific intervention

        • I’ve managed well without it, but I’m looking into how to get Schema without a psychiatrist as I have social issues unrelated to my mood problems I want to deal with.

          And goodnight! x

  12. Nice talking with you Seaneen, I’m going off to bed now, but thanks very much for talking

  13. All fascinating, the post, and subsequent conversation.

    Voices… seeing things or people… when you know it’s not real it’s unpleasant, but the terror of the stuff you don’t realise you don’t know isn’t real is not so good. And the suspicion and fear of the same, also.

    Anyway, thanks for a good read. Nice to see you posting occasionally again Seaneen.

    Take care all, David Alcock

  14. …I’m not sure I’d say that nurses are being “de-skilled” by having to work with social needs, social workers are normally trained to a higher academic level than nurses so it’s hardly a step down to work within a social framework and also if we’re looking for a genuinely holistic model then social needs are equally as important as “medical” (despite the paucity of clinical evidence to support such theories) needs…

    …the training we’ve had around care clustering stresses that “this isn’t about classifying people according to their diagnosis…” which seems to be a deeply alarming bit of Orwellian nonsense as it clearly is. My experience of completing a care-clustering tool in respect of someone is that it’s very much like one of those magazine-quizzes to find out “what flavour ice-cream is your aura…?!” or similar crap. It’s part of a disturbing move towards a conveyor belt do-it-by-numbers approach to mental health care, in which the system exists to justify the system’s existence: to perpetuate itself rather than (gulp) help people lead fulfilling, meaningful lives…

  15. Totally agree donnamodern – what’s happening in mental health [and welfare] right now is truly terrifying for anyone who uses services and works in them. I’d say that nurses and social workers are being de-skilled by government policy and commissioners demands to acquiesce to those policies. Nurses always used to deal with ‘social’ stuff and I find it ridiculous to see people going to ASTI services to be told that serious housing, living conditions and income issues are nothing to do with them, they ‘only’ deal with mental health. Well what’s the point in dealing with someone’s mental health if they have no income or no heating? Everything is so compartmentalised now, the service user is expected to go to 5 different statutory and voluntary sector agencies when a CPN or social worker used to address the lot. Sometimes I think a user could walk into an ASTI service holding their leg with arterial blood hitting the ceiling and they would still insist it was nothing to do with them. ‘Bio-psycho-social’ is really bio-bio-bio within psychiatry, and go to CAB, Jobcentre, housing office for social, and psychological gets missed completely unless any of us are believing that Can’t Believe Therapist for 6 – 12 sessions really does cure everything known to mankind, and makes the flowers bloom in spring. It’s shocking that I hear people refer to the late 80’s/early 90’s within the closing days of the larger asylums as better than services now because there were longer term relationships – correction – there were RELATIONSHIPS!
    Utter rubbish that Crunchy Nut Clusters are not about diagnosis 0 my arse, of course it is but it’s even worse because it takes the worst aspects of diagnosis and uses that to determine need and those needs appear to be more predicated on an ATOS assessment where level of functioning is more important than level of distress – cynical? yet bet! There’s some dove tailing going on here. The conveyor belt approach to mental health is shocking when you read about a woman’s GP referral being turned away by secondary services because didn’t fit their criteria for ‘serious mental illness’ [another joke concept and deserving of an entire blog] who killed herself 6 weeks later – pretty bloody ‘serious’ to her husband. Her anxiety wasn’t serious enough – that’s like an oncologist saying ‘oh sorry we don’t treat little lumps come back when it’s a great big massive tumour’. Critical, moderate and low needs have all been downgraded and I foresee a future where you won’t get a service unless you are viewed as a danger or nuisance to others [or you stop washing]. It’s a political sleight of hand to classify every contact with ASTI as “new” after discharge back to GP [which we know on the whole means discharge back to bugger all] when that same patient ends up back again 6 months later. Every nurse I listen to in clinical practise is unhappy because they can no longer do what they trained to do – nurse [same for social workers]. I could rant forever..

  16. sorry need to rant a bit further [it’s my therapy] – notice how self-harm is referred to within Crunchy Nut Clusters as “wrist scratching” -eh? lots of people self-harm on everywhere bar their wrists, what’s with the assumption that any self-harm has to be to the wrist?
    The reference to “serious” self-harm [that’s a whole blogs worth in itself] is no better, almost – casual. Organ damage [meaning internal organs] doesn’t take into account that the skin is the largest organ, but it’s as though damage to that is less important unless it is “severe”. Now how do we decide as to what constitutes ‘serious’ scarring? I’ve seen someone who survived setting fire to herself, yep the scarring was severe. I’ve equally seen someone whose scars were just as severe to her arms but by much less serious methods. I see people with severe scarring because their wound healing is poor and people whose scarring doesn’t in anyway reveal how surgically serious those injuries were because they have good wound healing.
    Wounds can heal badly and produce pronounced scarring with infection or poor or no repair, or be well repaired and leave a fine scar line barely noticeable when it’s fully matured at 18 months. So who’s going to decide what constitutes serious or not? It’s subjective. And why is self-harm now placed almost solely within the PD spectrum? People self-harm across the whole diagnostic spectrum last time I looked! I know psychiatry finds self-harm difficult but to consign it all to PD is clinically sloppy at best

  17. I definitely agree with it being important to build up a relationship with the CPNs etc, and as you say it *does* get tiring repeating your story over and over. It’s amazing how little information gets passed along when you start seeing a new person. It worries me that people will be passed from one treatment team to another as it gives a lot of scope for important information to be lost.

    I guess there is the point that the treatment teams will be experts on whatever symptom(s) they’ll be treating, but that means they may not know much about other symptoms that could emerge after someone has been assigned a cluster.

    I have 5 different social workers/ key workers/ CPNs since I first got ill, plus one therapist. The ones who helped me the most were undoubtedly the ones I have gotten to know well and have clicked with. My last CPN was a bit rubbish on a fairly fundamental level (she didn’t turn up to appointments, she turned up late, she left me with her student whilst she talked one the phone outside) but on the other occasions when it didn’t work very well for me it was just because I didn’t feel particularly comfortable with them. I’m good at pretending to be outgoing when I’m well, but when I’m depressed I’m very withdrawn, and if someone is going to help me then I need to know them and feel comfortable with them.

    If you get along really well with someone then it’s very hard when you have to stop seeing them as they can seem more like a friend. Thankfully the only time I’ve experienced this was when I became an adult and was under the adolescent mental health team anymore, but I can see in cases when people are moved to seeing someone else for seemingly no good reason it would be likely that a lot of people would just refuse treatment from the new team, and as a result be left to become even more ill. I can’t imagine these changes happening without it causing big problems and many patients being worse off as a result.

  18. It so is a case of divide and rule which seems to be the only real policy of cameron and his band of flying monkeys!

  19. I’ve seen some trust doc’s which state that inpatient care will only happen for a small minority, according to them 10/11 people with SMI will not require it because they will be seen by Home Treatment and Crisis services now. So acute units will effectively become intensive care units and more forensic. Apparently, this is what service users want [but I don’t remember them being asked].

  20. […] Seaneen is unimpressed by the re-organisation of mental health services into […]

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