The
night prior to the awearness day a group of parents and patients
were invited to attend a meeting led by Mr Vloeberghs, the
intention of the meeting was to establish if there was way
that the Nottingham procedure could be improved. After a lengthy
group discussion there was a number of suggestions made on
how the Baclofen clinics could be improved. It was also felt
by some of the parents whose children have just had the pump
that general information about the stay in hospital needs to
be made clearer. (All ideas are being looked into by the Nottingham team)
The focus of the meeting then moved on to the issue of funding
for the baclofen pump, it was at this point that Mr Vloeberghs
informed the group that local PCTS (Primary care trust) are
no longer providing funding for Baclofen pumps because
they have been instructed to save money wherever possible,
as you can imagine this revelation sparked outrage within the
group.
It is now a group consensus that something needs to be done
to revoke the decision that has been taken by most of the PCTS
including Nottingham.
The group now feels that a parent/Patient committee needs
to be setup in the coming weeks to highlight the tremendous
benefits and improvements in quality of life that children
have felt through having the pump, and that taking funding
away is not in the best interest of children with cerebral
palsy some whom are suffering a great deal of pain on a daily
basis.
On the 16th June 2007 the 10th baclofen awareness day was
held at the Belfay hotel Nottingham, the idea of the event
is to raise awareness about the baclofen pump and to give perspective
patients and their families as much information as possible
about the treatment and what to expect when they stay in hospital. Once again there was a lot of concern and frustration about
the funding issue.
We would be grateful for any ideas or comments that you have
regarding this matter. |
