...but then again so does Miss Rogers. Ah, I remember the day that the I first had the pleasure of the one and only, the unforgettable Miss Divina Rogers. I had been forewarned, of course: we doctors don't like to shit on a colleague’s doorstep without at least saying sorry. The registrar responsible for her admission had sidled up to me on the ward and confessed all. "There's one coming in today that I saw in clinic," she said hesitatingly, "who..erm...might be a bit of a challenge. Sorry." I knew the code well: for 'challenge' read 'barking mad'. When finally she made her debut entrance into the ward, she left no-one in any doubt as to the veracity of the registrar's warning.
The first thing I noticed was the fact that she appeared to be moving almost every muscle in her body simultaneously but in different directions. This lent her the air of somebody plugged into the mains, an image further strengthened by the fact she was indeed in an electric (wheel)chair. She was also wearing the most comical facial expression I have ever seen, something akin to a very shocked Cyril 'Blakey' Blake from On The Buses. Her voice can only be described as extraordinary. It's volume and tone veered up and down in such a fascinating way as to make it hard to concentrate on what she was actually saying. "Lordy," I thought to myself, "the circus has come to town."
The examination was nigh on impossible. Any attempt to get her to do anything only succeeded in exaggerating the movements until they attained a violence which would have been quite frightening, were it not so funny. The past medical history was sadly predictable: a paracetamol overdose, fybromyalgia and heavy investigation for unexplained abdominal symptoms. We did our duty all the same. She had the works: a page's worth of blood tests, an MRI, a lumbar puncture and an EEG. And surprise, surprise: there were all plum normal.
Now believe it or not, I tell you the story of Davina Rogers not as a joke (even if I do poke fun at it), but as an example of what constitutes a not insignificant proportion of any medical specialities workload - medically unexplained symptoms (MUS). The chest docs have 'atypical chest pain', the gastros have 'irritable bowel', the ENT docs get 'globus hystericus' and we, more commonly than the florid presentation above, see the 'pseudoseizures'. Yet, regardless of their differing labels, they all have at least one thing in common: there are symptoms for which no organic basis can be identified. The tests have been done - the colonoscopies, the ECG, the angiograms, the xrays, the EEGs, the CTs and whatever else might reasonably be tried - but they have all come back plumb normal. And it's there that the real problems start.
The first problem concerns what exactly to do with these patients once you have reached this stage. In many ways, doctors are like detectives: a patient presents with a certain symptom and the doctor works towards solving the mystery of the underlying causative pathology. When this mystery fails to yield an answer, however, the doctor is likely to become fatigued, dejected and might well lose interest in the case. The temptation is thus to discharge the patient from follow-up with the label of 'medically fit' and have done with them once and for all. Yet this approach fails to acknowledge that 'medically fit' people might still be in need of help, even if they have come to the wrong person in search of it. Indeed, in the case of medically unexplained symptoms, there is good evidence that if the diagnosis is made early enough and, if necessary, the patient manoeuvred towards the psychiatrists, the prognosis is good. The longer they are left to ping-pong around within the medical referral system, the less the chance of ridding them of their symptoms.
The most common misconception is that these patients are malingerers. This is incorrect from both a psychiatric and, indeed, a common-sense point of view. Malingering, by definition, aims to obtain a tangible benefit for the malingerer: the classic example being the heroin addict who feigns abdominal pain to obtain morphine. But in the case of MUS, the patient accrues no obvious benefit from their contact with medical specialists. They may even suffer harm in the form of side-effects of empirical treatments or complications of unnecessary investigations and procedures. The essence of MUS is illness behaviour in the absence of any identifiable organic disease. The absence of identifiable organic disease, however, in no way implies the suffering of patients with MUS is any less real. Unlike the malingerer who gets up and walks away once his goal is achieved or his scheming uncovered, patient with MUS are often persistently disabled, either physically or socially, by their symptoms in a way which dramatically reduces their quality of life. In the case of Miss Rogers above, she was wheelchair-bound despite the fact that no neurological need for one could be found.
One of the most difficult things is deciding how best to explain a set of normal investigations to a patient who continues to exhibit symptoms. To my mind, there are two ways of looking at it. Either, the tests are not good enough to pick up the underlying pathology; or, alternatively, there is no underlying pathology. Striking the right balance between these two ideas can be tricky though. Too much of the former and the patient goes away thinking that there must be an organic cause for their problems but it's just too complicated for us to work out yet; too much of the latter and they only hear "you're making it all up". Neither impression is likely to be helpful. You need to get the patient on your side if you are to stand any chance of having a positive impact on their life. You must help the patient come to terms with the fact the there are no more investigations to be done, whilst emphasizing that this is not equivalent to saying that we have nothing to offer in the way of help. It is essential, I think, that you frame the idea of a non-organic cause for their symptoms in such a way that allows the patient to accept this psychological framework with dignity and without loss of face. In addition, the stigma surrounding mental health issues is, alas, still powerful and efforts must be made to mitigate against this if the patient is not to understand a psychological explanation of their symptoms as an accusation of madness. With this kind of approach I usually find that patients' initial resistance to psychological interventions soon gives way to a willingness to try.
It currently falls to the psychiatrists to deal with those cases of MUS that are actually recognised as such and not just left to bounce backwards and forwards from one physician to another. We have an excellent service here at my hallowed institution, but I imagine other centres might
not be so lucky. There is evidence for benefit from a whole range of treatments in MUS, from physiotherapy, through psychotropic medication (particularly SSRIs as depression often underlies MUS), all the way up to CBT and other forms of psychotherapy.
As ever in the NHS, the clinch comes in the difficulties of balancing demand and supply. The scale of the problem is mammoth. Between 5-15% of all GPs' workload is estimated to consist of MUS. Yet psychiatry is underfunded and the parapsychiatric specialities even more so. Clearly a system that is already failing to deal with the tip is never going to cope with the whole of the iceberg. The solution, of course, lies in investment and a recognition that a significant amount of money could be saved in terms of benefits, repeated appointments, and needless investigations, if MUS was recognised as such early on and treated accordingly. Somehow I doubt that will be a recognition that's made within our lifetime...
functional illness MUS medically unexplained symptoms
