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Day 2003 – |
Baclofen
Day 2003 was on the 21st June at the Jubilee Campus,
University of Nottingham. Michael Vloeberghs, Consultant
Paediatric Neurosurgeon at Nottingham's Queens Medical Centre
reviews the day.
I’ve just decided to get on with it.
I always tell myself that I’ll do a summary and then put
it off until I get a reminder. So here it is.
What
actually happened that day? It’s the fourth meeting
of that kind held at the Exchange, part of the Nottingham University
Campus. The aim is to present the Baclofen team to interested
parties, physiotherapists, potential patients and clinicians
who have questions about Intrathecal Baclofen. The meeting
is totally informal and an open discussion can be held with
all involved.
The easiest is to summarize by following
the program: I did my presentation first a usual, this not
because I’m pulling
rank over the others, but because its important to get the
medical facts right and to explain how and why we do things
in this particular way. The entire program is dependent on
funding and this needs to be explained to potential parents,
patients and their carers. We are at the present still very
restricted with regards to funding. The next part is the presentation
of the results, the problems we have incurred and how this
has changed our practice. The Baclofen implants are an evolving
practice that aims to cater to the specific needs of Children
with Cerebral Palsy. The problems we incur lie within the bracket
of what is reported in the international literature on Intrathecal
Baclofen and we continue to audit our outcomes and results
in order to anticipate problems.
After
this tedious bit came the contribution from Dawn. Now Dawn
is a phenomenon. She’s 18 and has severe spastic quadriparesis
result of Cerebral Palsy. Dawn uses a “talker” to
communicate and I must say she stunned us with her comments
and life story. I hope Dawn will be a constant feature of the
future meetings.
Tony Leathers, who is a graphic
designer, then presented his work. Tony is designing the layout
for the information CD-Rom, which should be released next September.
The CD contains practical patient information on Intrathecal
Baclofen and the Nottingham procedure.
Jen
Wiss then informed us about the state of the website (www.baclofen.info)
and the novelties. We hope to attract more contributions from
patients and perhaps even some advertising. The advertising
segment is open to people with businesses that have Cerebral
Palsy or relatives of Cerebral Palsy patients. We’d like
to see the site as an expansion of the current “buddy” system
we run in Nottingham. It can only help if you can discuss your
problems and difficulties with people who hare the same experience.
Chris
Gooderidge, senior partner at Harris and Cartwright introduced
himself. People often question why we involve the legal profession
in our meetings because of the legend that medicine and law
don’t really mix. Harris & Cartwright
is the leading firm in negligence claims related to Cerebral
Palsy. This means they have a system that is well set up to
help parents with a Cerebral Palsy child. The message we’d
like to get across is that there is help available and that
medics and lawyers work together for your benefit.
Lunch
was all right but served in another building, which didn’t
really suit. I tried to change this on the day but modification
was not possible.
Chris
Gooderidge, senior partner at Harris and Cartwright introduced
himself. People often question why we involve the legal profession
in our meetings because of the legend that medicine and law
don’t really mix. Harris & Cartwright
is the leading firm in negligence claims related to Cerebral
Palsy. This means they have a system that is well set up to
help parents with a Cerebral Palsy child. The message we’d
like to get across is that there is help available and that
medics and lawyers work together for your benefit.
Lunch
was all right but served in another building, which didn’t
really suit. I tried to change this on the day but modification
was not possible.
The “after
dinner speaking” was done by Janet our ward sister, Allison
our senior physiotherapist and Rachel our trial coordinator.
These people actually carry the service because of all the
organizing and assessment that needs to be done. The nursing
input is extremely important in this program if only to make
sure that all parts of the procedure are carried out safely.
Rachel, the “trial coordinator” introduced the
forthcoming “trial”. Some funding agencies still
refuse to fund the procedure because patients are not enrolled
in a “Randomised Controlled Trial”. For that reason
Dr Richard Morton and me have decided to set up such a trial
on a national scale. Enrolment into and withdrawal from the
trial is voluntary and your choice. More information on the
trial will be available on this site in the near future.
Then
questions and answers. This meeting showed a lot of new faces
and many people came to find out what this is all about and
whom they would be dealing with. I hope each of us was able
to answer the concerns and remarks on the day.
From
the feedback from those attending the meeting and the Nottingham
team I’m convinced that we should continue
to organise these meetings as an open discussion forum on an
informal basis.
Lastly I’d like to thank the entire
team for their ongoing enthusiasm and the care and attention
to detail everyone shows. A special thanks to Ruth my PA, who
not only has to put up with me but also organised the meeting.
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Michael
Vloeberghs, MD, PhD,
Senior Lecturer
Consultant Paediatric Neurosurgeon |
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