I have spent the last few days looking at the forum and I am very impressed. I have been waiting for a site like this for years. I have spent years angry, frustrated, confused, irate, astounded, fabbergasted and infurated with all the doctors, health visitors, social workers, teachers, OTs, physios etc, with no-one to share it with apart from my husband (who just says 'now try to stay calm'!!!). Now watch out - I can vent all my frustration and anger into words on the forum and everyone will understand exactly how I feel.
Actually it has got slightly better since my son Ross moved to a specialist school for physical disabilites but i still tend to shout at the wheelchair services and Ross still does not have enough physio or access to hydrotherapy. I do worry when Ross gets older and moves from the paediatric services to adult services as i have been told that there are no resources - whats new
It has to change
We have enough to cope with. We do not need to fight for the care our boys should be having. Ross was diagnosed when he was 9 weeks old on newborn screening. Services have not really improved that much in 14 years, we still do not have a funded service for DMD - no specialist nurse or physio. I have decided i have been quiet for too long and this is the year that i need to get some action. Who is with me!