Clinic Speak: making the case for MSology

Should MS be managed exclusively by MSologists? #MSBlog #MSResearch #ClinicSpeak

"I diagnosed someone with probable motor neurone disease (MND, aka Lou Gehrig's disease) in my clinic last week. MND is one of the worst diagnoses you can give to someone in neurology; it has a similar incidence to MS with an average survival of less than 3 years.  The patient had to be admitted because of breathing difficulties. Once we had done the definitive diagnostic tests I had to handover the care and on-going management of the patient to one of my colleagues who specialises in the disease.

Why?

I realised that as a MND expert he had quick and direct access to all the necessary specialist services to manage this patient; i.e. rapid transfer to the respiratory team for a nocturnal ventilation and referral to a clinical nurse specialist and speech therapist in the MND team for counselling and to assess swallowing, respectively. He is also able to offer the patient the possibility of participating in a clinical trial recruiting newly diagnosed patients with MND. More importantly he had all the up-to-date MND facts this patient and their family were asking about. I was simply not up to speed with what MND services were available for this patient, nor was up-to-date about all the facts they were asking about. For example, I did not know the NHS guidelines on genetic testing for familial MND nor did I have the NHS treatment guidelines for riluzole at my fingertips. Fortunately, my registrar was able to provide them for me.  Although, I would have done an ‘okay job’ looking after this patient, they would not have gotten the cutting-edge knowledge, care and access to support services they deserve.  I now realise the same rules probably apply to MS.

Neurological knowledge has vastly expanded in the sub-specialities; it would be unfair for a generalist to have the necessary skills to manage the full spectrum of neurological disorders without some help. The problem is particularly pertinent for MS in view of the explosion in the number of new treatments and the change in treatment paradigm that is currently occurring.

Is it fair for MSers in 2013 to be managed by a non-specialist neurologist? At the MS Trust Annual conference, last week, many attendees suggested that many of problems facing MSers in the UK could be solved if everyone had access to an MSologist and MS clinical nurse specialist. In many areas of the country MSers have limited access to general neurologists, never mind specialist services. What can be done about this? Can we expand the number of MSologists and MS CNS? Ultimately, this would be the best solution, but will take time and money. We are currently living through a period of austerity in which any expansion of NHS services and staff is difficult. NHS managers are telling us to do more with less; i.e. less staff. A rapid expansion in MS specialist staff is therefore unlikely.


The kinds of issues that need to be addressed at a national level are rapid diagnosis and access to disease-modifying therapies; discussion, and adoption, of the early, highly-effective, treatment paradigm, of treat-2-target of no evidence of disease activity (NEDA); adoption of an holistic approach to MS treatment and management; and preventative strategies to try and reduce the burden of MS. 

Could technology provide a solution?  Could we be using the web to educate and help general neurologists stay on top of their game and to provide MSers with self-management tools to educate themselves and their neurologists? I have been told by many people that this blog helps a little in this regard. A lot of professionals are now following the blog and are use it as a source of information.  This was never the aim, or remit, of this blog. We started the blog to bring research news to MSers and their families. It would be difficult, and inappropriate, to change the blog’s focus. What we may be able to do is use the blog as a gateway to a self-help guide and to a separate professional education portal.  Do you think there is a need for this activity, or a simple way of collating the information that is already on the blog? For example, could we make the Clinic Speak posts more systematic and accessible?"

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