Clinic Speak: making the case for MSology

C
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?”


About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

6 comments

  • Doesn't Projects in Knowledge already do this kind of thing? http://www.projectsinknowledge.com/neurology

    I have a wonderful neuro who is a generalist. But I live in a town too small for a specialist…the nearest one is 250 miles away. I don't think my neuro could possibly have time to absorb the latest information for my disease and all the other neurological conditions he sees every day. I think it would be smart to enlist a nurse to specialize in MS for small towns like mine and to use internet to keep the nurse affiliated with one of the major MS Centers.

    • Thank you for your comment. I built a quick survey tool to explore these issues in more detail. I agree with you that general neurologists need to continue managing MSers, but need to be aware of emerging trends and ask for help when making treatment and management decisions. MSers need to have access to the latest knowledge and treatments and should not be personally disadvantaged by lack of access to a MSologist or specialist nurse, which is unfortunately the case for many MSers living in the UK.

  • I think there is a real need for MSers to be seen by MS specialists. I gave up going to out patient appointments for about 10 years because I go so fed up of generalist saying 'you probably know more about MS than I do'. If I'd been able to see a specialist I might not have drifted into secondary progressive MS without really noticing.

  • General neurologists often just kick the can down the road, ie They don't put MSer's on DMTs early in the course of the disease so store up medical / social problems for the MSer (and their family) and financial problems for the NHS and taxpayer

  • In reality I'm not interested in a ologist of any sort I want a doctor who can get me better. I can't see how any neuro can be called a specialist given that so little is known about the disease and there are huge gaps in treatments for progressive disease. At the moment all we really get is a diagnosis and then shunted off to an MS nurse to do the dirty stuff. The annual appointment is really a waste of time – basically told to keep on the same medication. I always ask about future treatments options e.g. neuro-protection therapies and remyelination therapies and get a shrug of the shoulders in response. I don't think my general neuro does any research – main job is diagnosing people with lfe long / life shortening / incurable illnesses of the brain. Couldn't think of a worse job. I'm guessing those who spend 1/2 their time on research get a bit more job satisfaction. Telling someone with MND they have 3-4 years max is so sad.

  • Although in a perfect world, everyone would be seen by an MSologist, it's not going to happen due to cost. Therefore, we need to make generalists better by 1. refresher courses in the latest treatments, trials etc. They should not be able to say 'you probably know more about MS than I do'. 2. e-medicine support for generalists by an MSologist, but I suspect this might need a culture shift in the general neuro community who don't want to look like they need any help.

By Prof G

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