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?"