Thought that those of you with kiddies with complex needs may be interested in this (http://www.cen.scot.nhs.uk/definition.html).
It's a network which is trying to improve services for the most complex of children. There is a service users group which discusses many issues and has produced a DVD and workshop in relation to the emotional impact of tube feeding and has just finished another DVD and workshop about Communication and how does it feel and how to be a more effective communicator when your patient has no speech.
Sorry it's a bit of a ramble, anyway the link to the website is above and I'd encourage you to have a look and if you have the time/energy then maybe join the Service Users Group.
The annual conference is on 8th September in Perth and will focus on how Emergency Care is managed for children with exceptional healthcare needs. You are all welcome to attend, just need to register, and all travel costs/childcare costs will be reimbursed. This goes for the Service users group too.
Anyway, Sorry for the ramble but this is a good thing and the more the merrier as they say.
If you're interested I can PM you the email address of the manager............please do! It's good to have a platform and a voice. xxxx
P.S. Luuk doesn't quite meet the criteria but they are happy for me to be on the Service Users group
I definitely would but will be 38 wks when it's on so won't make it. I did go to The Emotional Impact of Tube Feeding Conference which was in Edinburgh and found this really helpful. It was mostly professionals with only a handful of parents so I think it's important that more parents attend.
I think I am on the Service Users Group by email but haven't had contact with them for a while. I had a phone interview last year about Acute Care. I found the tube feeding conference a bit daunting too.
had a look at it again Shazzy and im thinking its not going to be a goer for me, just the logistics of getting to Perth for 10am and it doesnt finish till 4pm which will create "small boy home from school" problems IYKWIM?