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.