Just a note to keep you updated and to ask for your help and support by forwarding your comments. All data will be collated and presented to NCG at a meeting on Wednesday 13th October.
Back ground information for those who are new to VGM:
In October 2004, the Support Group was contacted by a representative from the DOH, requesting a meeting, we met the following week in London and have continued to be in contact.
October 2005 NSCAG notified us that ministers had decided that services for patients with Vein of Galen will be taken into the NSCAG system with effect from April 2006.
The designated centres are the Southern General, Glasgow and GOSH, London.
A meeting took place in Glasgow prior to the new service which was attended by representatives of GOSH, Southern General, VGM Support Group and headed by Edmund Jessop NSCAG Medical Advisor.
A further meeting took place on 6th March 2007. We were very lucky the late Prof Lasjaunias accepted an invitation by NSCAG to attend the meeting. The communication was very good and the outcome was very positive. Prof Lasjaunias contribution was valued by all involved & we believe his attendance was one of the key factors to the meeting being so successful.
The service has now been running just over four years and NCG have arranged a follow up meeting on October 13th.
At the previous meetings we have had the opportunity to put forward parents experiences, worries & views for the future. Many of these have now been addressed but some issues still require attention, with out your contribution we can not continue to move forward.
I would be very grateful if new parents could send me responses to the following questions:
- How and where the diagnosis was made – antenatal / diagnosed at birth etc?
- Were you referred to one of the designated centres
- Will there be on going treatment?
Also comments on the following from both new and existing parents would be gratefully recieved:
- General information regarding the service including follow up appointments of patients in the UK and those children being treated in Paris & New York.
- We would very much appreciate updates on your experiences & views since the very sad loss of Prof. Pierre Lasjunias.
Please include any other comments including compliments, complaints and general observations. Any and all feedback is useful.
We really do need all of your input on this, it is essential to build a service that will work for our children long term.
For all comunication please use the contact form on this site