In the BMJ of 23rd April are listed the finalists for the BMJ Neurology team of the year awards, which include the Multiple Sclerosis team of UCLH for its integrated service.
Reinvention of the wheel? Failure of institutional memory? Left hand not knowing what right hand is doing? All three possibilities come to mind when I read the nomination which “to everyone’s surprise” showed that urinary infections were the commonest cause of admission in patients with MS.
I am certainly surprised it was a surprise. Indeed when I read this I was almost speechless. I have known, and taught this for nearly 30 years. I took over a Young Disabled Unit in 1985. Over the next ten years I and my multidisciplinary team turned it from a long-stay unit with 15 residents to a dynamic rehabilitation unit with some 300 clients, the majority of whom had MS. We provided a regular inpatient respite service, a helpline and regular outpatient review, which was supplemented in later years with bladder ultrasound. The superb nursing staff were also alert to admissions of our clients to acute beds, from which they would be extracted as soon as possible – or at the very least they would make a trip to the acute ward to advise. I taught all the trainee doctors that patients presenting to A&E with a sudden deterioration in their MS had an infection (usually urinary, but sometimes chest) until proved otherwise. While deterioration was rapid, so was recovery if effective treatment was instituted rapidly. I might add that, as a clinical point that will save some lives if anyone reads this, some patients with an acute infection regularly developed severe hyponatraemia which we attributed to acute adrenal insufficiency, and recovered with hypertonic saline and hydrocortisone; whether this phenomenon was related to previous high dose steroid treatment for relapses we never did determine.
We also provided an effective pressure sore service. Regular physiotherapy helped prevent contractures and maintain mobility. Occupational therapy home visits were a sine qua non. Our service was entirely integrated. Our local district nurses involved in home care regularly exchanged information. If a patient “went off” suddenly then infection testing was arranged at home. Not infrequently I would write the antibiotic prescription. Unit emergency admissions were organised not by GPs but by family or the district nurses by direct contact. In this way we actually kept MS patients out of acute hospital beds. All of this was done without any input from neurologists.
To return to my opening paragraph it appears to me that the UCLH team have reinvented the wheel. I regret that my teaching in a suburban district general hospital never permeated to the centre to provide a lasting institutional memory, but perhaps the most damning indictment is that, until relatively recently, it was rehabilitationists who dealt with long-term MS patients and not neurologists, who concentrated on diagnosis (once made, there was little treatment, so many, though not all, lost interest). So the crossover of information from left to right hand was as limited as in a patient whose corpus callosum has been transected. It is thus encouraging to see the growing interest and enthusiasm of neurologists in integrated long-term management.
Though our model was highly effective, and much appreciated by patients and their families, it was expensive. The Unit kept afloat as much through my political lobbying as through its care success. Within a year of my retirement it had been closed down.