I am so angry!!
I met with the Welsh health minister Edwina Hart last year regarding the inadequate service provide to patients with Neuromuscular disease particulary Duchenne Muscular Dystrophy. At the time we were on a waiting list for a sleep study and had a delay of 18 months. She said that funding would be secured for an appropriately commissioned comprehensive sleep study. It's one year on and now I have found out that when our respiratory consultant leaves next month there will be no sleep studies done in Wales and amilies will have to travel to GOSH or Glasgow!! to have one done. Also that no respiratory consultant would attend the muscle clinic in the special school he attends.
I will be attending a cross party meeting on Wednesday with MDC at the Welsh Assembly and the health minister will be at the meeting. I intend to ask her why these services no longer exist and what she is going to do about it.