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.
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?
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.