"The Outreach Dystonia Nurse
Practitioner"
In 1988, I assisted Professor Barnes in
our first botulinum clinic with a handful of clients at the Regional
Neurological Rehabilitation Unit in
years it quickly grew to become a weekly
session. There was a slow but
steady trickle of dystonia referrals but this increased
dramatically when Dr Butler's epidemiological survey began to produce new
clients.
The clinic numbers increased rapidly
therefore other doctors were
brought in to assist, unfortunately they changed frequently and
the client may have seen a different
clinician at each visit, directly
affecting the quality of the treatment. The situation came to a head in 1994 when a new
clinic had to commence, however it was obvious by
examining the rate of new referrals that this would be only a temporary measure. Professor Barnes had a number of
discussions with staff,
management and the local dystonia support group and the outcome was
that I should start to give the
botulinum treatment.
The post began as a research project,
using a grant from the Northern Region Health Authority, the
hypothesis being, could a Nurse
Practitioner deliver the care and treatment as effectively for quality and cost as the doctors in the clinic. The
project consisted of an
initial total of one hundred and twenty people with dystonia,
split randomly into two groups. One
group had treatment at the outpatient clinic by medical staff and the other
received their care at home by the nurse
practitioner who had undergone a six month training period. The clients in each group where assessed
for clinical efficacy, i.e. response to treatment and side effects, using dystonia
rating scales. Quality of life issues
where recorded by an independent assessor (Dr A G Butler). Every conceivable cost to the
NHS and the state was counted.
There was a number of variables which
biased the project against the nurse
practitioner; first the medical staff already had a number of years experience giving the treatment prior
to the project, whereas the nurse had
none; clients in the clinic group sought advice from the nurse which he was obliged to give, however this
should have been given during the
doctors consultations; as the project ran it became obvious that certain
practices were improving the quality of care, for example the efficacy of
treatment was improved when given by the same clinician,
shown in the home group and caused the medical staff to change their practice
before the completion of the research; finally the clients already had
confidence in the doctors but the nurse was an unknown entity. In spite of
these biases the final result still fell in favour of
the nurse practitioner.
The findings showed that the care given
by the nurse practitioner was as good and in many instances better than that
given by the clinic. The side effects where fewer and less
severe in the home group, also the clients preferred the home option, bearing
in mind they already had experience of the clinic. Finally on cost; the
expense was the same to
the hospital trust for both groups, however the cost
to the "State" was half for the home group compared to treatment
given at the clinic.
The results were so successful that the
trust immediately funded the outreach nurse practitioner post. I now have a
caseload of over one hundred and fifty clients and run a number of outreach
satellite clinics. The rehabilitation unit now also has two other nurse
practitioners giving botulinum treatment and there are plans to set up a team
of outreach nurses to make the dystonia clients treatment community based.
There are now a number of nurse ractitioners working
in other trusts in the